pp12-ii/06 - tynwald · curriculum vitae of j f helps jennifer frances helps...

PP12-II/06

I

Select C om m ittee of the H ouse of K eys

o n V o luntary Eu t h a n a s ia

A ppendices

Table of Contents

Appendix 1

Curriculum Vitae of J F Helps

Appendix 2

List of Abbreviations

Appendix 3

House of Keys Select Committee on Voluntary Euthanasia: Oral Evidence

Appendix 4

House of Keys Select Committee Notice of Invitation for Written Evidence

Appendix 5

Public Written Submissions

Appendix 6

Recent Developments in the House of Lords: ADTI Bill 2005

Appendix 7

Comments from IOM Medical Society Survey

Appendix 8

Copy of Standard Letter of Receipt

Appendix 9

Copy of Postcard from Manx 4 Death with Dignity Campaign

Appendix 1

Curriculum Vitae of J F Helps

Jennifer Frances Helps

¡[email protected]

Date of Birth Citizenship

02/08/81 British (Manx)

Educational Details EstablishmentNatural History Museum/Imperial College, London Brasenose College, University of Oxford Castle Rushen High School, Isle of Man Burgoine Middle School, Potton, Nr Sandy, Beds Wrestling worth Lower School, Nr Sandy, Beds

From To2003 2004 1999 2002 1992 1999 1990 1992 1986 1990

Examining Body Subject Yr GradeImperial College, London MSc in Advanced methods 2004

Distinctionin taxonomy and biodiversity

University of Oxford BA Hons in Biological Sciences 2002 Class IAQA A Level Biology 1999 AOCR A Level Chemistry 1999 AAQA A Level French 1999 ANEAB GCSE Biology 1997 AMEG GCSE Chemistry 1997 ANEAB GCSE French 1997 ANEAB GCSE Art & Design 1997 ANEAB GCSE Physics 1997 BNEAB GCSE Mathematics 1997 BNEAB GCSE Music 1997 BNEAB GCSE Religious Studies 1997 BNEAB GCSE English Language 1997 BNEAB GCSE English Literature 1997 C

Work Experience OrganisationGreens Ltd Arragon Properties

Job DescriptionKitchen Assistant Seasonal Gardener

Student

AddressIsle of Man Isle of Man

Tropical Biology Association Cambridge Oct 02-Dec 02Friends Provident Isle of Man ReceptionistLloyds Private Banking Isle of Man Audio TypistDuke Video Isle of Man ResearcherPort St Mary Commissioners July 00-Sept 00

Isle of Man General Clerical

DatesFeb 05-June 05 May 03-Sept 03 & Fieldwork

Sept 02 Aug 02July 01-Sept 01

mailto:[email protected]

AwardsOpen Scholarship and College Prize at Brasenose College, University of Oxford

InterestsMy academic interests have included conservation, biodiversity studies and sustainable development. I was the social secretary of the University of Oxford Biological Society (2001-2002). My non-academic interests include playing the piano, dance (Ballet and Manx), languages (Manx, French, Swahili & sign language), scuba diving and travelling.

Academic ResumeAfter my secondary education in the Isle of Man (Castle Rushen High School), I took a place at Oxford University to read Biological Sciences. Whilst at Brasenose College in Oxford I was awarded a College Prize and a Scholarship. I graduated from Oxford with a Class I Honours degree. I then travelled to Madagascar where I undertook a research project concerning the distribution and regeneration of Adansonia rubrostipa (Baobab tree). I am currently in discussion with a colleague to publish the results of our studies on A. rubrostipa in this area together. In 2003 I went to the Natural History Museum, London and studied for a Masters in Advanced Methods in Taxonomy and Biodiversity. In the course of my studies at the NHM I travelled to Belize to conduct research and collect specimens and data for my thesis which was titled "DNA-based identification of larvae: an exploration and development of the methodology of DNA taxonomy". This thesis addressed the development of a relatively new scientific concept and explored the methodology, feasibility and ethics of the procedure. I graduated from the NHM (in conjunction with Imperial College London) with a Master of Science with distinction. After completing my studies I travelled throughout Eastern Africa, and I hope to resume my academic studies in 2006.

Appendix 2

List of Abbreviations

APM Association for Palliative MedicineANH Artificial Nutrition and HydrationBMA British Medical AssociationBME Board of Medical Examiners (Oregon)CCNE National Consultative Ethics Committee for Health and

Life Sciences (France)CPS Clinical Predication of SurvivalDAA Disability Awareness in ActionDAD Doctor Assisted DeathDHS Department of Human Services (Oregon)DHSS Department of Health and Social Services (Isle of Man)DPP Director of Public ProsecutionsDRC Disability Rights CommissionDWD Death With DignityEAPC European Association for Palliative CareECHR European Convention on Human RightsGMC General Medical CouncilGP General PractitionerHK House of KeysHL House of LordsIOM Isle of ManLCD Lord Chancellor's DepartmentMHK Member of the House of KeysMND Motor Neurone DiseaseMP Member of ParliamentNCHSPCS National Council for Hospice and Specialist Palliative

Care ServicesNHS National Health ServiceNMAC Nursing and Midwifery Advisory CouncilNMC Nursing and Midwifery CouncilNOP National Opinion PollODDA Oregon Death with Dignity Act (Oregon)PAD Patient (Assisted Dying) Bill (UK)PCA Palliative Care AustraliaPOLST Physician Order for Life-Sustaining Treatment (Oregon)RCGP Royal College of General PractitionersRCN Royal College of NursingROTI Rights of the Terminally 111 Act (Australia)SAMS Swiss Academy of Medical Sciences (Switzerland)SAPC Swiss Association for Palliative Care (Switzerland)SCEN Support Consultation Euthanasia Network (The

Netherlands)TLRAS Termination of Life on Request and Assisted Suicide

(Review Procedure) Act (The Netherlands)UK United KingdomUSA United States of AmericaVES Voluntary Euthanasia SocietyWHO World Health Organisation

Appendix 3

House of Keys Select Committee on Voluntary Euthanasia: Oral Evidence

KCE, No. 1

H O U S E OF K E Y S O F F I C I A L R E P O R T

R E C O R T Y S O I K O I LY C H I A R E AS F E E D

P R O C E E D I N G SDAALTYN

(HANSARD)

S E L E C T C O M M I T T E E ON V O L U N T A R Y E U T H A N A S I A

BI NG E R - L HE H MY C H I O N E COYRT - GY - BAAS E MY GHI N A G H LESH COARDAI LYS

Douglas, Wednesday, 5th May 2004

2004

Published by the Office of the Clerk o f Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle of Man. O Court of Tynwald, 2004 Printed by The Copy Shop Limited, 48 Bucks Road, Douglas, Isle of Man

Price Band E

2KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004

Members Present:Mr Q B Gill MHK (Chairman)

Mr D M Anderson MHK Hon. A F Downie MHK

Mrs H Hannan MHK Hon. J Rimington MHK

Clerks:Mr M Comwell-Kelly, Secretary of the House of Keys

Mrs M Cullen, Deputy Clerk of Tynwald

Business transacted

PageProcedural............................................................................................................................................................................... 3

Evidence of Miss B Critchlow, Director of Nursing Midwifery and Professional Development, Noble’s Hospital.... 3

The Committee adjourned at 11.10 a.m. and resumed at 11.15 ajn .

Procedural............................................... ................................................................................................................................ 11

Evidence of the Dr J Garland, Clinical Psychologist, Oxfordshire Mental Healthcare TYust................................... . 12

The Committee adjourned at 1236pjn. and resumed its sitting at 2.00 pjn.

Procedural..............................................................................................................................................................................23

Evidence of Mr P Cusworth, Research Officer, LIFE UK, accompanied by Mrs Newton............................................23

Procedural.................................................................................................................................................. I......................... 36

Evidence of Mr P G Bryden, Sulby..................................................................................................................................... 36

The Committee sat in private.

Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 3 KCE

House of Keys Select Committee on Voluntary Euthanasia

The Committee sat in public at J0.05 a.m. in the Millennium Conference Room,

Legislative Buildings, Douglas

[MR GILL in the Chair]

Procedural

The Chairman (Mr Gill): Moghrey raie. Good morning everybody.

This is the first public evidence session of the Select Committee of the House of Keys on Voluntary Euthanasia. That is the title that the Committee decided between us, but it is not exclusive to issues of voluntary euthanasia; it is about assisted dying. But I hope that we can take the title of the Committee as indicative, rather than exclusive.

Just for introduction and by way of recording on Hansard, if I could ask Miss Critchlow and other people giving evidence if they could speak as clearly as possible to assist our Hansard recordings and also, by way of introduction, I will introduce my colleagues: from the far end, John Rimington MHK; David Anderson MHK; Alex Downie MHK; I am Quintin Gill, the Chairman; to my right is Mrs Hazel Hannan MHK; and this is Mrs Cullen, who is the Clerk; and we are also clerked by the Secretary of the House, who is Mr Malachy Comwell-Kelly.

EVIDENCE OF MISS B CRITCHLOW

The Chairman: First to give evidence today - thank you very much for your attendance - is Miss Critchlow. Perhaps if we could turn over to you and ask you to introduce yourself and your role and your interest in this subject, Miss Critchlow.

Miss Critchlow: Yes, thank you. My name is Bev Critchlow. I am the Director of Nursing and Midwifery at Noble’s Hospital. I also have a responsibility as the Chief Nurse Adviser and that is to the DHSS. I chair the NMAC on the Island, the Nursing and Midwifery Advisory Council, which is a group of senior nurses who lead and develop the nursery and midwifery profession on the Island.

The Chairman: Rather than having this in one order or the other, we will just take things as things occur, if that is okay?

Miss Critchlow: That is fine.

The Chairman: If we are popping at you from different angles, I hope it will be alright Can I begin by asking: when you say ‘senior nurses’, what definition is ‘senior’?

Miss Critchlow: All of the nurses who are on the Nursing

and Midwifery Advisory Council are the lead nurses in their own division or section and so that includes Noble’s Hospital, the hospice, the community nursing practice, Ramsey District Cottage Hospital, nurse education on the Island and also the independent sector, and so it is really represented by all the leads in all sectors of nursing on the Isle of Man.

The Chairman: How many people would be covered by those?

Miss Critchlow: There are 11 members, I believe.

The Chairman: Eleven members on the Council, and how many nurses would you represent on the Island?

Miss Critchlow: There are around 900 qualified nurses, midwives and health visitors on the Isle of Man.

The Chairman: But your Committee is representative of the whole spectrum?

Miss Critchlow: Yes.

The Chairman: Right. Does that include community nurses?

Miss Critchlow: Yes, it does.

The Chairman: Thank you. Your Council has kindly given us a two-page paper which, basically... Would you like to describe the contents of it?

Miss Critchlow: Yes. As part of our role and, obviously, in relation to the introduction of this Bill, we sought the opinions of nurses throughout the Island. We asked for their comments in relation to the introduction of the Bill. We had 38 responses from nurses and midwives. There were 37 nurses and midwives that opposed the introduction of the Bill and one nurse supported it

I think you also have to consider, in relation to the individual views of nurses and midwives, the professional bodies that represent us, which are also important and so we sought the advice of the Royal College of Nursing, which is our professional body and also our professional union, and also the Nursing and Midwifery Advisory Council in the UK, which is our regulatory body and they regulate nursing on the Isle of Man.

The view of the Royal College of Nursing (RCN) is that they do not support an introduction of such a Bill. They believe it is really contradictory to the professional ethics of nursing and medicine and they will not support any professionals who practise either assisted suicide or voluntary euthanasia.

The Nursery and Midwifery Council in the UK has not put a position statement out, although they consider that this is still in the legal arena, and it is against our code of professional conduct, so they will not support nurses who practise either assisted suicide or euthanasia at the present time.

The Chairman: Can I just ask you two questions on that, please? The numbers that have actually responded out of 900 or so is 38?

Miss Critchlow: Yes, it is about 4 per cent

ProceduralHouse of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow

4KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence

The Chairman: Do you want to offer an opinion, if that is...?

Miss Critchlow: I think there are a number of reasons for that, really. I think it is a difficult issue for nurses to consider and it is one that they are not considering in their professional arena at the moment It may be due to just general apathy really, in all fairness, or it may be that it is a professional and ethical dilemma, that they really do not want to address at the moment

I did ask nurses about that, and they really did not feel that they wanted... I do not think they believe it will become a reality, in all fairness. That was the general opinion.

The Chairman: When you say the RCN, I think certainly you mentioned, will not support members, what does that mean in practice?

Miss Critchlow: Really, I suppose it means that they would not support them when, and if, something goes wrong, and they will not support that practice. The Royal College of Nursing produces professional standards and codes of conduct and within those professional standards, they would not be producing any professional standards related to assisted suicide or voluntary euthanasia. They provide indemnity for nurses who are members, and most nurses are members of the Royal College of Nursing or the Royal College of Midwives, and they provide indemnity and insurance. They would not provide indemnity insurance if something went wrong.

The Chairman: Are there any other areas of nursing practice where that disinclination to provide indemnity occurs?

Miss Critchlow: I do not know of any offhand. They have not made any positional statements in relation to that

The Chairman: But given your role and your experience, chances are, if it was occurring, you would have heard of it?

Miss Critchlow: Yes, and I think if you work outside your scope of practice, what is reasonable and practised by a reasonable body of nurses and midwives, they will generally not support you. If you work within a reasonable kind of practice you will be supported. This is the only thing that I know of that they have made a specific statement like that on.

M r Anderson: Can I just follow up on one area that you covered at the start? What is your relationship with the nurses that work within the hospice?

Miss Critchlow: As the Chief Nurse Adviser for the Isle of Man I work very closely with them in helping and supporting their professional development, along with the senior nurses at the hospice. So it is really in an advisory capacity.

M r A nderson : So they work to the NMAC guidelines?

Miss Critchlow: They all work to the NMAC guidelines, yes.

Mr Anderson: If, for example, the Isle of Man did bring in some legislation, there would have to be some sort of guidelines put down then, would there, for the Isle of Man, separate from NMAC?

Miss Critchlow: Yes, I spoke to the Nursing and Midwifery Council in the UK on this. It is not a flexible organisation, really. It provides a code of conduct across the board and they said, unless UK legislation was to change, this is not on their agenda. I asked what if Isle of Man legislation was to change and they said, ‘Well, effectively you are governed by UK legislation. Nurses and midwives' are governed by UK legislation, really, and we could not see a way round that’

M r Anderson: Thank you.

M r Downle: Could I ask, would it be possible, Miss Critchlow, to have a copy of the codes of conduct and the professional standards?

Miss Critchlow: Yes, I have not brought that here today, but obviously, that can be provided.

Mr Downie: Yes, and, obviously, being a member of the Royal College does provide this specialist insurance indemnity. Would it be possible to obtain information of what would not be covered?


M r Downie: That would be helpful for the Committee.

Mrs Hannan: Isn’t there a problem here with...? Nurses are involved with patients dying, whether it is in a general hospital, in the community or in a hospice. It seems to be the consent of the patient If the patient consents to die, that seems to be the problem. Would you not agree that you have got a hospice, you have got the community or you have got a general hospital where we all know that nurses are involved with patients dying, so is it just because the patient consents to it that is the problem?

Miss Critchlow: I am not sure what your question is, Mrs Hannan.

Mrs Hannan: Well, we all know that nurses are involved with patients dying...

Miss Critchlow: But not assisting patients to die.

Mrs Hannan: Well, there is a line, isn’t there?

Miss Critchlow: A very fine line, yes.

Mrs Hannan: - whereby you are assisting someone to die and relieving pain. So you are relieving pain, but in relieving pain the patient dies. What I am saying is that when we do that... I am a nurse and I have experience in this field. It seems to be the problem of the patient actually consenting to it Would you not agree that, in a hospice - 1 do not know what happens in a hospice, whether a patient consents to die, - but that is what happens?

Miss Critchlow: Potentially, a patient who goes into a

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B Critchlow


hospice probably realises that they are coming to the end of their life, and they are going there for palliative care, in order to ease the dying process, but not necessarily to exaceibate death.

I suppose, what happens in reality is analgesia or other drugs are given, which, actually, may exacerbate the death, although it is not the intention to actually cause death. The intention is to relieve symptoms and I think that is a difficult dilemma. It is a very difficult dilemma, but there is a difference between voluntary euthanasia and assisted suicide, and actually relieving symptoms at the end of life.

Mrs Hannan: What do you understand by voluntary euthanasia?

Miss Critchlow: What I understand by voluntary euthanasia is where, with the patient’s consent, the patient is actually assisted to die by giving them a lethal substance of some sort

Mrs Hannan: Doe euthanasia not mean a 'nice death*, or whatever?

Miss Critchlow: Well, the Greek term means good death, but it is hard to define euthanasia on its own, and that is why on many occasions we now put other terms with it- either passive, active, voluntary, involuntary - because ‘euthanasia' itself really means ‘good death*; but it is the word that we put on before it which is probably the descriptor in some ways.

Mrs Hannan: It is a few years since I have practised as a nurse, but do patients actually give consent now for strong analgesia?

Miss Critchlow: It depends on whether they are able to, but most patients recognise that they are having analgesia to help their symptoms, yes. An informed consent - it might not be written consent - is always given because you have to have a patient’s consent, if they are able to give it, to put an injection in the arm or whatever. If the patient is not able to consent then you would hope that the doctor and the family act in the best interests and make the decisions about the best way to care for that patient as they can.

Mr Anderson: I just wondered: had you any personal experience of nursing dying patients, and would you like to comment on how you found that situation for yourself?

Miss Critchlow: I have never experienced where a lethal substance is given to a patient with the intention of causing their death, and I think most nurses will tell you they have never experienced that

Most nurses will have experienced periods where a patient is, really, coming to the end of their life, and you want to support the dying process, relieve symptoms and, as 1 said eariier, there are times when we know that there is a risk that that will exacerbate the timing of death, but that death is inevitable.

It is distressing for all concerned and the nurse’s role, really, is to give the support to the patient and the family, and also in a multi-professional way to work as a member of that team. I think the difficulty that some professionals have sometimes is that patients will often talk about not

themselves and the dying process, but the burden that they are on others around them and the effect it is having on others around them: ‘I’m a burden on the healthcare system, I’m a burden on my family, I’m a burden on my friends.’ So, it is not often about themselves, and what they are actually experiencing, but what they do not want others to experience.

Mr Anderson: Do you think as a result of that, then, if legislation was brought in, that those people would become more vulnerable, be a vulnerable group of people in themselves?

Miss Critchlow: I think there are risks to introducing this kind of legislation. There are risks of not introducing it There are risks that some patients will die in a symptomatic state where they are experiencing pain or suffering. That is never going to be alleviated for everybody.

But there are also risks whereby, if you introduce such legislation, you introduce risks, whereby vulnerable people feel that they have an obligation to society or to their family, or to whoever, to request either voluntary euthanasia or assisted suicide. You have risks whereby you start to undermine the trust and the relationship between healthcare professionals and patients, because elderly people coming into hospital might not fully understand the position, and not know their position in requesting voluntary euthanasia or assisted suicide and actually might become frightened of the healthcare system.

I think that is a worry for some health professionals, too, and that people may feel obliged to request voluntary euthanasia when it is not really what they want but what they think others want.

Mrs Hannan: Could I just ask: do you think there is enough protection for nurses and healthcare professionals?

Miss Critchlow: We hope we work in a blame-free organisation, in healthcare, but one that is accountable, so I think if people practise within their codes of conduct and practise within reasonable, standard guidelines, then I think they are protected by their organisation.

One of the challenges that we have - and I think on the Isle of Man that challenge is even greater - is that we are a small community and to maintain the confidentiality of those who practise, who might practise assisted suicide or euthanasia, might be more difficult in a community like this. Protecting the anonymity of the patient as well, might be more difficult in a community of this size, and I think those are things that we have also got to consider on the Isle of Man.

A healthcare professional is not as anonymous on the Isle of Man as they might be in a bigger society, and so I think within the organisation, if there were legal guidelines in relation to assisted suicide and voluntary euthanasia, then the individuals would be protected, but the difficulty is whether they are protected on the whole from society.

Mrs Hannan: I am just thinking now, in the situation there is now, is there enough protection for nurses? If a nurse thought that a patient was being given too much analgesia, what position could she play, at whatever level, in the actual administration of that analgesia?

Miss Critchlow: In all fairness, I think it is obvious


6 KCE SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 Oral Evidence

that the medical practitioner is the one who would at the present time prescribe analgesia, but nurses do question, they question all the time, and we are becoming a much more questioning, profession - there is no doubt about it - and being encouraged to question, and teams work as a multi- professional team now, and a lot of the decision-making is made as a multi-professional team.

It is not made by a physician alone, and some nurses would question - and I know that nurses do question at the present time - whether it is in relation to analgesia or other forms of healthcare practice. At the end of the day, the accountable officer, really, is the medical practitioner, the consultant or the GP or whoever, but nurses would question, yes.

M r Rimington: Would you agree that, if legislation was brought into the Isle of Man, the issue about lack of guidelines, or the UK guidelines not being able to accommodate the position in the Isle of Man, is a practical issue, and a serious practical issue, but should not, in itself, negate the process of legislation?

Miss Critchlow: I think the difficulty is that it would be a very practical issue that would have to be addressed, and I think it would be a difficult and complex issue to address.

At the moment nurses are regulated, obviously, by the UK legislation, and that has then been translated into the NHS Bill here. That makes it very difficult and there would have to be considerable negotiation. The NMC is a very big standing body, there is no doubt about it, and it is a statutoiy body and to negotiate on behalf of 900 nurses with them would be quite a difficult task.

However, I can see that if we had legislation here, those processes would have to be gone through, if nurses were willing to practise assisted suicide or voluntary euthanasia.

M r Rimington: Could 1 go back to the fact of the very small response you had to your questions. Also, I do not know how you framed them or whether it was just a standard letter or a questionnaire. Would you agree with me: our evidence is that the people who oppose the concept of medically assisted suicide make their views known, and make their views known quite strongly, whereas for those who support, the concept is probably not felt so deeply and do not tend to make their views known.

Say the Isle of Man, and probably elsewhere, in broad terms, had been imposed and, say, the majority are in a simplistic way in favour, whereas when you come down to people who wish to give evidence, then the majority who give evidence are against. Would that... ?

Miss Critchlow; I can understand what you are saying, but the same could be said, the opposite view, that people who are for assisted suicide and voluntary euthanasia also make their views very well known.

In relation to the way we framed the question, we asked people for their views if they wanted to make a view, because we were presenting written evidence as a part of this process, and so, those who made their views known, either did that verbally or in writing. I think the same could be said for those who support voluntary euthanasia and assisted suicide.

One of the things that is quite clear - and I think when you talk to nurses - there has been some research in the UK, where it all depended on how the question was framed. The

question, I believe, was framed: ‘Do you support a patient’s right to die?’ Most nurses would say yes, but if you then ask them: ‘Would you assist in that process?’ then their answers might be quite different, and they were not asked, then, would they assist in that process.

So, 1 suppose it is a matter of what you feel in your heart can be quite different from what you practically would do as a nurse. It can be a different thing, really.

Mr Rimington: Would you speculate that the fact that the 800-plus did not respond, would reflect a degree of indifference and probably an openness to consider how they might respond, if things did change?

Miss Critchlow: 1 think that that is something that would have to be considered and maybe a more informed, more directed study would have to be done of opinions. In relation to NMAC we just wanted to really make sure that we were responding... if there were great views out there, if there was a certain opinion out there, that we were not missing it, and it appears that we have not missed it at this time.

A lot of people have said that they understand... It is a very complex issue and people understand both sides of the coin in this - they really do - but I think it is different when you are asked to practise it, and that is when nurses would really have to consider what they wanted to do.

Mr Rimington: Yes, I think you would probably accept that if legislation was brought in, it would be voluntary, in the sense that there would be no compulsion on any practitioner, either nurse or medical practitioner, to participate, if they felt they could not, from their conscience point of view.

Miss Critchlow: That would be very important within the boundaries. That would have to be within the legislation, there is no doubt about that, and there may be some people who would want to object, and there may be some people who would be willing to assist

M r Rimington: If society itself, through lawmakers, has the opinion that medically-assisted suicide is a practice which they are prepared to condone under, hopefully, very tightly controlled circumstances, understanding that there would be reluctance amongst professionals - as indeed there is reluctance in the general public because there is divided opinion - would it not be reasonable for the nursing profession to accommodate that view about changing the law?

Miss Critchlow: We talk about the rights and the autonomy of the patient, and that is very important, but we also have to consider the rights and the autonomy and the well-being of the healthcare professionals that would be asked to practise this. That has also got to be an important balance within the view. There will be practitioners who would be willing to accommodate this legislation, l am sure, but there would be others who would not be.

M r Rimington: But as a body of the individuals that are in it, would it not be fair for the wider body to put in place procedures to accommodate the fact that some are prepared and some are not prepared?

Miss Critchlow: I think at the moment the Royal


Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 7KCE

Colleges, both within nursing and medicine, believe that those procedures are so difficult to cover every scenario that that is part of the reason why at the moment it is not something that they are willing to consider. The Royal College has quite clearly said it cannot see in the foreseeable future where it would change its position. The Nursing and Midwifery Council would have to reconsider if UK legislation was brought in. I do not think there is any doubt about that But the Royal College of Nursing has quite clearly said it cannot see in the foreseeable future where it would change its position.

M r Rimington: Would you accept, as a general point, that law can never, satisfactorily, cover every scenario in whatever area it is dealing with, and that it lays down general principles and guidelines, regulations, to try and cover as many scenarios or conditions that are relevant, but, in essence, it is the spirit of the law, and the case law that derives from that over the years, through the interpretation by the courts, which establishes how that law is actually managed in careful definition?

Miss Critchlow: I accept that principle, and I think, in practice, it is often very difficult to interpret In healthcare, the reason why many ethical dilemmas go into the court is because they are so difficult for the professionals to deal with, and, in some ways, it is a way of finding a solution by things going into the court But I am not convinced that the profession has found a way through some of those issues itself, yet

Mr Rimington: No, I am sure they have not I think there are a lot of people who have not found their way through it as well. Thank you.

M r Anderson: Maybe, if I could just ask about the relationship a patient has with his doctor and with nursing staff: would you agree that that is built on trust, and do you think that if legislation was brought in that would affect that relationship that is built on trust?

Miss Critchlow: That is one of the issues that nurses have raised, and I think the profession has raised, that it is very difficult to see a way of not undermining that trust and relationship, and, especially, for those who have not yet really developed a trusting relationship with their doctor. To be able to develop one, takes time and I think there is a view that this may undermine that relationship, yes.

Mrs Hannan: But there must be a relationship where the doctors and nurses cannot do anything more, and there is a time when doctors and nurses cannot do any more, but the patient, surely, is still trusting, and there is this crossover, isn’t there, between relieving pain and actually giving someone enough analgesia for...? Where is the dilemma there for the nurse?

Miss Critchlow: I think there is a dilemma there that you have to consider that, as I said earlier, there is a difference between actually having the intention of ending life, and supporting dying, and relieving the symptoms of dying. The patient will have a trust that their doctor and nurses are doing everything to relieve their symptoms, but not necessarily with the intention of ending their life.

Mrs Hannan: But the nurse and the doctor knows that to give more...

Miss Critchlow: Yes, they know that there is a risk that it will exacerbate the timing of the death.

Mrs Hannan: Is there a time limit which is recommended for people who work in this particular area, in certain wards and hospices and palliative care in the community? Or do people work in it for years and years? Do you know?

Miss Critchlow: Most people have got a lot of experience and they choose. In all professions, now, people choose to specialise in certain areas, and palliative care is a recognised speciality within medicine and nursing.

There are some views: I can remember working, in England, in a palliative care unit, where that practice recommended that people did not work there for more than three or four years, and that might be right that might be wrong. But there is not a standard recommendation that ‘This is fairly trying work, so, therefore, you should only work in it for a few years and then have a try of something else’. No, there are people who work in palliative care for all of their careers.

Although it can be an extremely rewarding specialism, it can also be a very distressing specialism, but I think that applies to any area of nursing or medicine, whether it is paediatrics, whether it is oncology, whether it is medicine, whether it is surgery.

Mr Downie: Could I just ask you a couple of questions then. If the law were to be changed in the Isle of Man, to make assisted dying available as an option, your evidence, to date, shows that there would be major problems with the Royal College in the UK, first and foremost

The other thing we have not touched on, yet is that there would need to be a conscience clause, as it were, because, obviously, there are people in the profession who would not want to get involved in assisted dying. Could I have your views on that, and also, just to clarify that the legislation in the Isle of Man on the termination of pregnancy is different from the legislation in the UK, and there is an opt-out clause here, in that piece of legislation, for medical staff and doctors.

Mrs Hannan: It is in the UK, too.

Mr Downie: So, if you could just give me your views on that issue.

Miss Critchlow: Effectively, you would be looking to have - 1 do not know what you would term it - a clause for conscientious objectors, maybe, or for those people who really did not feel that they could assist because it was against their norms and values, against their ethical and professional principles.

I think you would have to have such a clause. You have to respect the diversity of the health workforce now. There are a number of different values, norms, beliefs, religions working in the healthcare sector, both here and in the UK, and our practices have to reflect that, not only in relation to issues around termination, but other issues we also have.

We allow for people to object, for example, to administering emergency contraception, and other issues like



that It can be a challenging dilemma for some professionals, because of their background and their beliefs, and there has to be some flexibility within the system, to allow them to object.

Mr Downie: The other thing I wanted to ask you about, was that - obviously, you have been in nursing a number of years, you are at the very forefront of the profession, you have got a really good idea as to what goes on within the nursing services - would you say that there have been significant advances in the levels of palliative care over the last few years, and has this brought about a better opportunity to provide relief for people who are suffering when they are dying?

Miss Critchlow: Yes. I have seen massive advances in palliative care over the years. More than 20 years ago, I worked in a hospice in England, and I can see great changes when I consider die practices within the hospital and hospice here on the Isle of Man now. There have been advances in all supportive therapies really, not only in the medicines but also in alternative therapies that, really, were not considered, maybe 15 or 20 years ago, to be of relevance to the patient, and so there have been massive advances.

One of the key things to people’s opposition to this is that, if assisted suicide and voluntary euthanasia are introduced, then those advances may actually slow down, or people and the professions and research, et cetera, may not invest in the same way that they have done, in trying to find ways of relieving what can be distressing symptoms of dying.

But I think it is also fair to say it is not always a distressing time for the patient themselves, but it always is a distressing time for families.

Mr Rimington: On that last point, if legislation was introduced here in the Isle of Man, how many people would you, realistically, expect might wish to avail themselves of that legislation?

Miss Critchlow: 1 have no idea. That is a difficult one, really, but 1 should imagine, in a population of 75,000, if that is the case, there would be very few.

Mr Rimington: Can I just lead on from there. In the statement you felt that if legislation was introduced, this would negate development of palliative care and, obviously, the argument has been put forward that this undermines hospice et cetera. Could I put the view to you that the numbers who might be involved, i.e. of individuals who would wish to go down that route and met the criteria, which would be quite strict, to actually allow them to go down that route, would be very small, compared to the numbers of people who are actually passing away year on year, and would not by any means, undermine developments in palliative care and hospice care, but could indeed be... There are arguments to the contrary, that this is part of that process, but just a very fractional part and it just widens that area.

Miss Critchlow: There is a view that having an alternative choice may not in any way influence the development of palliative care, but in an issue like this, which is complex, and for every argument for there is an argument against, the view that was expressed by some of the nurses was that it may undermine the development of palliative care.

My personal view is that, like you, there would be very small numbers, so, therefore, there would be far more people who would be requiring palliative care than assisted euthanasia or voluntary suicide, but 1 think it is a point that has to be considered, if that is what the professionals feel will happen.

M r Rimington: It is, in the way that you expressed i t as an alternative to palliative care, whereas the evidence,I believe, from where it has been legalised elsewhere in different forms, is that it is part of that palliative care process that those few people that do go down that particular route are really only going down that route in the very last period of their life, where they have already been involved in palliative care for some considerable time, and there is quite a high percentage that relates to the last week of their life or the last month of their life. So, they are already receiving palliative care; it is not there as an alternative.

Miss Critchlow: I think at the moment the definition of palliative care does not include assisted suicide or voluntary euthanasia. The clear definition of palliative care, which is promoted by the World Health Organisation, states that it will not prolong life and it will not hasten death. The point you make would, effectively, add a different dimension to palliative care because it would hasten death.

M r Rimington: Yes, but what I am trying to say is it does . not... Many people involved in that - still small numbers, but elsewhere - have been involved in that route, it is has been in the closing stages of their life, where they have already obviously been involvéd in the system of palliative care to that point when they take on that different dimension. For them, thè majority of people that have availed themselves of that circumstance, it has not been as an alternative necessarily; it is just an alternative in the end process.

Miss Critchlow: It is difficult because you cannot say when a patient is going to die. With experience, you. can say, ‘Well, the death is probably fairly imminent,’ but you cannot say that, * If we assist the suicide today the patient was probably going to die tomorrow anyway’. So, it is very difficult to say when do you make that decision, or when does the patient make that decision because they think their death is imminent.

M r Anderson: Could I just ask if you think depression is more common in people who are ili, than people who are healthy, and, as a result of that, do you think that could influence somebody’s decision-making process when they are ill?

Miss Critchlow: Yes. Obviously, I have not done significant research, but I have seen patients enough to know that when they are ill, they feel different than when they are well, and patients who are dying often feel a sense of doom and forlorn, and take time to reflect over things and they often exhibit symptoms of depression, yes, and that can influence the decisions that they are making and the choices that they are making at that time.

Also, they see their families who are exhibiting those same sorts of behaviour and to see your family unhappy or sad or anxious is probably difficult for anybody, really, and that can influence the way patients feel.

House of Keys Select Committee on Voluntary Euthanasia — Evidence of Miss B Critchlow


As I said earlier, I think most professionals will tell you when you talk to a patient who is dying they usually talk about others and the effect it has on others, rather than the effect it has on themselves.

M r Anderson: Would you agree that probably about the lowest point of depression for people is actually when they are diagnosed in the first instance?

Miss Critchlow: Yes, I think so and you go through all those processes, don’t you? Those grieving processes where it is disbelief, then anger and denial and then a sense of acceptance really and a sense of... Many patients actually use the period during a terminal illness to plan, to think about things, to think about their life, to spend time with family. So for some patients that period of time is very important

M r Anderson: And going on, would you agree, then, that there is quite a fine line between depression and mental illness?

Miss Critchlow. Well, clinical depression is a form of mental illness. Feeling low and down, as everybody does at some point is not necessarily mental illness, but if you are clinically depressed it is a form of mental illness at that time. If you are not dying, it does not mean that you will go on to have mental illness for the rest of your life, but it is a form of mental illness.

Mrs Hannan: But, if the legislation was written to say that somebody had to be of sound mind, then, in that instance, they would not conform to voluntary euthanasia, would they, and in some legislation, would you not agree that there should be what you might call a cooling-off period, whereby maybe there was a month from making the decision to in actual fact remaking a decision, and would that not help?

Miss Critchlow: I think there would have to be, really. That is the other issue with advance directives and that is one of the big dilemmas, that when you make decisions about your life or your well-being, there is a timeframe in which you may make those advanced decisions or advanced directives, when you are in a certain state of mind in a certain timeframe, and you think you know you have made the right decision. Other things can affect that decision further down the line, and, at any point somebody should be able to overturn those directives, if they are able to.

Mrs Hannan: What happens if somebody comes into hospital, and I do not know whether it happens or not, but the request is not to resuscitate? Is that always conformed to, if the patient says, ‘I don’t want to be resuscitated’? Is that...?

Miss Critchlow: Advance directives are taken into consideration when caring for patients and also the patient's choices in relation to the care that they have. A patient can ask not to be resuscitated and those decisions are usually talked through with the patient so that they fully appreciate... They are talked through with their family and they are made as an... The clear practice in relation to that is that they must be made in relation to... The ‘do not resuscitate’ guidelines, basically, say they must be made with the patient with the patient’s closest relatives or carers and also with

the healthcare-professional team so a doctor cannot make those decisions with a patient on their own, and it is about informed decision-making.

Mrs Hannan: Are they always abided by?

Miss Critchlow: They usually are abided by, if the reasons are the right ones, but a doctor may overturn those in the best interests of the patient It depends on why the patient has made those decisions. If the patient has no illness whatsoever, and no reasons why they should not be resuscitated and go on to live a normal life, then their decisions may not be as informed as they feel they are, and a doctor will try to help a patient understand that

Mrs Hannan: No, but if a decision has been made with the patient and the doctor and the team and everything, is it usually abided by?


The Chairman: Could I ask you, you said, ‘the right reasons’: who determines what is right and wrong, in this scenario you have just described?

Miss Critchlow: That is the difficulty, isn’t it? Because there are different ethics, different values. The patient’s reasons might be good and proper for the patient, but they might not be good and proper in the views and values of others, and that is the real dilemma here. It is what is a ‘good death’, it is what is in people’s different views, and that is the difficulty.

At the end of the day, within medical and nursing ethics, your decisions have to be based on what is right and good for the patient and that is where most ethical dilemmas come about because what you believe as a healthcare professional is right and good, might not be the same as what a patient believes is right and good.

The Chairman: So the potential inherent in what you have just said is for some healthcare professional to impose their values on a patient against their express, informed, persistent wishes?

Miss Critchlow: There is always a potential for that, but that is why no one individual makes those decisions, and it is made by a healthcare professional team. No one individual works alone now in healthcare.

The Chairman: Could you just go back to the issue about the proposal that trust is somehow built up between a medical professional, a doctor and a patient by not accepting their persistent and informed and considered opinion but by knowing better. Would that be a fair summary of what you are describing?

Miss Critchlow: No, what I am describing is that I think there has to be... Consent is not at one point; consent is often a journey between the patient and either the medical practitioner or the team, and so, if a doctor or a team persistently oppose the views of a patient or their family, then I think that would have to be challenged by the patient and their family, and other team members could become involved, other second opinions could be sought But really.

House of Keys Select Committee on Voluntary Euthanasia-Evidence of Miss B Critchlow


if a doctor persistently negated the views of the patient, then there probably is not a trusting relationship that has been formed, anyway.

The Chairman: So, the corollary of that is a trusting relationship will be one where the doctor or the medical team respects and considers and, where possible, accedes to the opinion of the patient where they are given in an informed, considered manner?

Miss Critchlow: You would hope so, yes, and act in the benefit of the patient

The Chairman: Could I just go back to the very small...I think 95 per cent of your membership on the Island did not respond, either through, I think you described it as, apathy or a disinclination to believe that anything is going to change. What are you doing, currently, to obtain a more full view of your membership about these issues?

Miss Critchlow: 1 think at the moment it is not... Here on the Island, it is a key issue, at the moment and it is on the political agenda and it is on the public’s agenda. In general, it is not an issue, at the moment that is on the professional agenda within our college or within NMAC, but I think that is something that has to be considered. Their position has been made clear and NMAC have said... Our UK body has actually said, *71118 is not on our agenda at the present time/

M rs Hannan: There is a Committee of the House of Lords looking at this in the UK.

Miss Critchlow: Yes, at the moment and they have not been asked for their opinion, as yet

M rs Hannan: They are taking evidence, I think, in July. There is another body looking at this in Guernsey, so it seems to be very much alive in lots of communities at the moment

Miss Critchlow: I think what maybe needs to happen is that there is a more informed opinion of nurses and midwives here on the Island and the medical body. We directly asked for opinions, and that is the position that was forthcoming.

The Chairman: You are not saying that there is any specific initiative that you will be doing to obtain a more full representative view?

Miss Critchlow: Not unless requested to do so.

The Chairm an: Could I just ask you a couple of questions, if I may? In your view, do you think that there are a number of patients who would actually require a change in the law to allow the issue -?

Miss Critchlow: Would require or would want?

The Chairman: Would want then, okay.

Miss Critchlow: Yes, I think there probably are a number of patients who would, but I think, as we said earlier, on the Island, where, in the bigger scheme of things, it is probably

a small percentage of people.

The Chairman: And what would your understanding be of the number of residents on the Island who would want a change in the law?

Miss Critchlow: As it stands at the moment, from what I have seen it is quite... It is around about 2,0001 believe, but I am not fully informed on that But that is whether they want a change in the law. Whether they actually want to request assisted suicide or voluntary euthanasia is a different thing, but I am not fully informed on the actual numbers.

The Chairman: Would I be fair in reflecting that back to you, that would be a very small minority of people on the Isle of Man who actually have indicated in MORI polls in the media that they want a change in the law with proper regulatory guidelines?

Miss Critchlow: In a population of 75,000 that is probably relatively small, yes.

The Chairman: You were not aware of the MORI poll that said there were something like 70-plus per cent of the population asked wanted a change in the law?

Miss Critchlow: I am aware of that, but again, I am not fully... I think I would have to consider how that view was sought, and on the questions that were asked. 1 personally was not asked, as a resident

The Chairman: No, and I think we need to be clear, most of your questions, unless you have indicated, you have been answering in your official role rather than in a personal capacity -

Miss Critchlow: Yes, not in a personal capacity.

The Chairman: - unless you had said.


The Chairman: Good.

Mr Anderson: Could I just ask, if there was a change to legislation on the Isle of Man, do you think it would create a problem, if our jurisdiction’s legislation was different from all the other jurisdictions round about us, in attracting certain medical and professional medical practitioners to the Island? Because if our legislation is different we would obviously get a load of publicity.

Miss Critchlow: I think so, yes. I am not convinced it would attract, necessarily, any doctors and nurses who specifically had a view on this, and, therefore, wanted to come to the Island, because the numbers would be so small.

M r Anderson: But on the contrary, the other way round?

Miss Critchlow: It may make people think twice about actually coming to work here on the Island, if we had this legislation in place, but I think, unless, you ask them it would



be difficult for me to comment, to be honest with you, Mr Anderson. I think it would be something that would have to be considered. If people were able to opt out, though, then that is a different matter, but it may give an indication of our values to people, either rightly or wrongly.

Mr Anderson: When abortion for example was legalised in the UK, a clause was introduced for doctors who would not wish to perform termination of pregnancy in any circumstances, and this was said to protect those doctors with such views. What actually has happened is that doctors with those sort of views find it very difficult to get jobs in gynaecology. Do you think a similar situation could arise in doctors likely to invoke the conscience clause, and find that militates against them in obtaining positions in the jurisdiction that might permit voluntary euthanasia?

Miss Critchlow: I would hope the profession would not let that happen. I would hope that organisations would not let that happen. This would be a very small number and so saying that you consciously object to assisting in suicide and voluntary euthanasia, really, should not influence whether you are able to practise here or how people would view you as a practitioner here on the Island. Most of your work would be in relation to healthcare practice. This would be a small part of it, I suppose, so you would still be able to perform99 per cent of your job, you would hope. Slightly different in relation to gynaecology in the view this would be a very small part If you work in gynaecology you would have to work with patients who were requesting termination. In this circumstance you may not have to work with patients who are requesting assist»! suicide or voluntary euthanasia, so it is a difficult issue to judge really.

M r Downie: I have a couple of questions for you. Given that the staffing position in die hospital, both with doctors and nurses, I would guess, as a fair number, there would be people there from about 20 to 25 different nationalities -

Miss Critchlow: I suppose there are.

Mr Downie: - a huge amount of variance right across the spectrum, particularly the doctors. Would I be safe in saying, then, that if the Isle of Man was to go ahead and introduce its own type of legislation without the blessing of the BMA, the Royal College of Nursing or the Nursing and Midwifery Council, we could find ourselves in major conflict? And could I have your views on whether, if we went down that route, there could be a likelihood of the Isle of Man’s position being blacked in some way by some of these organisations?

Miss Critchlow: I think there would be a conflict, there is no doubt about it, and there would be a conflict that would have to be overcome. There are no conflicts that cannot be overcome in one way or another, but it would have to be overcome and that would be quite a hard process, I have no doubt As I have already said, the Royal College of Nursing has quite clearly said it will not condone and will not support any members who practise assisted suicide and voluntary euthanasia.

At the moment, I do not think their position will change, so that would put people in a difficult position here, as part of their membership of the Royal College, there is no doubt

about it and that practice would not be supported by their college.

The Chairman: Could I just pick up on that and ask, as an extension of that, presumably the RCN, BMA all the rest of the professional bodies, do they blacklist or have any kind of censure against people who have been in professional practice in Oregon or the Netherlands or Belgium?

Miss Critchlow: They do not represent... They have their own representation.

The Chairman: No, but the people who have worked there previously and they have engaged in these practices?

Miss Critchlow: It is the practice: it is not that they would not let those people be members, it is that they would not support them in that practice, and, like I said, it may be that that is one small part of their practice, but they would not support them in that practice.

The Chairman: So, would it be likely or not - do not let me put words in your mouth - that the BMA or the RCN would want to blacklist the Isle of Man with a carpet blacklist because a small part of some people have opted in to engage in the lawful process of voluntary euthanasia or assisted dying?

Miss Critchlow: I do not think they would blacklist us. I just do not think they would support the practice.

The Chairman: The practice, at that point, yes. Could I ask you about Oregon and the Netherlands and Belgium? Do you have any misgivings about the medical practice or the qualifications or the ethical integrity of the practitioners in those jurisdictions who engage in these practices?

Miss Critchlow: No, there are two sides to this, and there are right and wrong within it They have made decisions within their legislation to practise assisted suicide, voluntary euthanasia and those are the decisions, and I respect those decisions of those countries.

The Chairman: John?

Mrs Hannan: No questions.

The Chairman: Thank you very much. Before you go, is there anything that we have not given you the chance that you wanted to share with us, or to conclude or to clarify some of the points that we have touched on?

Miss Critchlow: No, I do not think so

The Chairman: Thank you very much for your time Miss Critchlow.

Dr Garland was called at 11.15 a.m.

Procedural

The Chairman: Dr Garland, I have just been asked by

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Miss B CritchlowProcedural


my colleagues for a two-minute comfort break, so perhaps we would all be grateful of that We will rejoin in just a few moments.

Dr Garland: I have a few copies of the statement I would like to make. I do not know whether it would be helpful to have those. Everybody may like to have a glance at them in the comfort break, if you are not otherwise engaged.

The Committee adjourned at 11.10 am. and resumed at 11,15 a.m.

Procedural

The Chairm an: Thank you, everybody, for your indulgence, and Dr Garland, thank you for attending. I think you were here, previously, when we did the introductions (Dr Garland: Yes.) to the Committee, and the personal introductions, so we will not go back over that

If I could, perhaps, remind you we are taking the recording for Hansard (Dr Garland: Sure.) so if we are mumbling or stuttering, please let us know, and if you could speak clearly, that would be much appreciated.

Dr Garland: Right

EVIDENCE OF DR J GARLAND

The Chairman: You were kind enough, just now, to give us a statement that you want to give to the Committee. Do you propose reading to this, or is this background information for us?

Dr Garland: Well, I would be really guided by you. If you feel it would be helpful to read to this, and you might wish to raise questions, as I go through this, I would hope that some of these issues could be dealt with this moming here, because they do have a bearing on some of the things that have already been discussed.

, So, I am really in your hands. It is not a lengthy statement and, obviously, I would leave out all the references and just the text itself. What does the Committee suggest?

Mr Rimington: I would suggest that obviously, you would be able to give a copy of this to Hansard> so that they can -

Dr Garland: Certainly.

M r Rimington: - put it in the record, if that is the considered view, then it might be right then, obviously, to have it recorded.

Dr Garland: Yes.

The Chairman: So you are happy with that Dr Garland. We will take this document to be reflected in Hansard, and for the sake of other people who are here, and have not seen

a copy, maybe, if you could talk us through i t and summarise it as you go, and, maybe, if we hear that, and then come back with questions, rather than interrupt you, if that is okay.

Dr Garland: Thank you. Thank you very much. It is just prefaced by the observation that:

‘Throughout history, any idea worth its salt has been guaranteed to cause widespread offence. Everything from universal suffrage to organ transplants, from contraception to legalised divorce, was once considered an offence to public decency’.

Regarding the notion of ‘the good death’, we have standards that vary with the extent of secularisation and individualism within a particular culture.

Palliative care and the movement to support voluntary euthanasia do have something in common. Both find support in individualistic societies that promote personal autonomy- that is, the right of individuals to make their own choices about how they should live and die. The question of how to die well today is how to live sometimes for months, or even years, knowing that we are dying. This question is what both the palliative care and the voluntary euthanasia movements are addressing.

The view that patients should be able to choose the manner and timing of their death is gaining support. In a British Medical Journal poll, 692 respondents voted on the three most important characteristics of a good death. Lay people selected freedom from unpleasant symptoms, choice over timing of death, with the possibility of bringing death forward, and choice over the place of death. Healthcare professionals differed, they picked freedom from unpleasant symptoms; agreeing about number one, , bu t with number two, they put freedom from heroic medical interventions; and third, choice over place of death. Timing, I think, only came fifth on their list

Some patients may never accept their end calmly and may not wish to be pain free, if its cost is to have consciousness and control diminished. The concept of a patient not wishing to be pain free and peaceful is so far removed from healthcare professionals* notion of good, that they may discount the patient as non-rational. To pressure patients to have what professionals would call a good death is paternalistic.

The interests of professionals and patients may not always coincide. The good death is one that is considered appropriate by the patient and accordingly requested by them. Patients could well argue that the duty of healthcare is to ensure that their good death is provided, rather than one determined by others.

The significance of a request for assisted dying: in Oregon psychologists can be involved in screening patients asking for assisted dying. Ninety-seven per cent of psychologists confirm that tiiey would not view such a request as prima facie evidence of a mental disorder. Research shows that depression is not a primary motivating factor in requests for assistance to die. This has been demonstrated in a number of studies. Indeed, from a psychological perspective depressed patients would have difficulty in marshalling the energy and determination needed to persevere through the requirements of the law in Oregon.

Research in Oregon shows that the reasons people ask for and receive assisted suicide are many. Most often they involve issues of autonomy and dignity. Physical symptoms such as pain and fatigue tend not to be the reasons people

ProceduralHouse of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland


cite in making a request, although anticipation of worsening symptoms may influence a request. Hospice nurses and social workers note that a patient's desire to control the circumstances of death is primary among 21 reasons for requesting a lethal prescription. Readiness for death is ranked second and wishing to die at home ‘not hooked up to machines in an institution* is third.

Palliative care in Oregon is of a very high standard. In Oregon; in 2003, 93 per cent of patients who died from physician-assisted suicide were in hospice care, or ’comfort care’, as it is known in Oregon. Everything is done to ensure that the patient does not need to choose physician-assisted suicide. For example, it is important to point out that physicians initially respond to requests for assisted dying with palliative interventions rather than lethal prescriptions. Patients who received physician-assisted suicide stayed in hospice care on average for 49 days, whereas other terminally ill patients who did not choose this option spent on average 19 days in such care.

Who seeks assisted dying? In Oregon, such people tend to have above average financial resources and a college education. The most active in .a pursuit of assisted dying tend to be focused, determined, strong-willed and stubborn individuals who are single-minded and uncompromising in their approach. They particularly value remaining in control and avoiding dependence on others, they see little value or meaning in proceeding through a drawn-out dying process, and are extremely sensitive to physicians who appear to discount them by mistakenly labelling them as ‘depressed’.

Some are described by physicians as loners by choice, whose views do not mesh with the philosophy of hospice care. They appear more willing to consider palliative or hospice care, if assured that assisted suicide remains an option in case of need. Twenty per cent of all persons who die by assisted suicide in Oregon are offered hospice care, but initially refuse it. Patients actively seeking physician-assisted suicide and they tend to prefer the term ‘hastened death’ tend to deliberate about their decision and communicate their intent to family members.

Deaths tend to be carefully planned in a context of social support and the patients, as I have already mentioned, are of above average socio-economic status and are not motivated by poor social support or financial concerns. While palliative interventions lead some patients to change their minds, others experience more care as fuelling their fears of a spiral of increased dependence on others.

If they are to encourage more patients to change their minds about assisted dying, palliative care practitioners need to develop ways of responding to existential concerns, fear of dependence and lack of control. In the Netherlands, the number of serious and persistent requests for assisted, dying stabilised after 1995, and is estimated at approximately 5,000 a year.

The relative importance of pain as a major factor in requests has decreased significantly, and this has been paralleled by a proportionate increase in concern over severe limitations imposed by deteriorating health. Fears that the lives of increasing numbers of patients would end through medical intervention, without their consent and before all palliative options were exhausted, have proved unjustified.

‘How frequent is assisted dying?’ In Oregon, only 1 per cent of those who die each year explicitly request for assisted suicide. Assisted suicide occurs only rarely in

Oregon, accounting for six to nine of 10,000 deaths per year. Physicians grant about one in six requests for a prescription for a lethal medication and one in 10 requests actually results in suicide. Regarding evaluation of requests for dying, many symptoms given as diagnostic of depression are also common in severe physical or terminal illness. Requests for assisted suicide are not necessarily driven by depression.

Many important questions about how these assessments should be conducted remain unanswered. It is an important task and it is usually done in far from ideal conditions. The legal standards in Oregon are that a patient must be able to express a stable choice; they must understand the risks, benefits and alternatives of the decision, they must prove able to appreciate the information by applying it to himself or herself and they must be logical in offering rational and understandable reasons for the requests.

Regarding the views of patients and family carers, there is relatively little research into the experience of patients requesting assisted dying. Healthcare providers do need to respect the views of dying patients and not only regarding cultural and religious attitudes, but also secularism.

Oregon patients and carers report that they value clinicians who show openness to discussions about assisted dying, expertise in dealing with the dying process and ability to maintain a therapeutic relationship even when there is disagreement They are aware that in a medical culture, that views death as failure, physicians can be unprepared to discuss topics such as dying and suffering. These can constitute an unacknowledged ‘elephant in the room’, with a patient and clinician colluding to avoid difficult topics.

Overall, families of hospice patients who did receive prescriptions for lethal medication were more accepting of and prepared for the patient’s death, although they were somewhat more likely to report distress than were the families of other hospice patients. Among other topics, patients had spoken of not wishing to burden their families, although in general the families concerned were better able to deal with care-giving and more positive about it than the others’families.

The Dutch studies of family and friends of patients receiving voluntary euthanasia showed them to be less religious and with a higher level of education than the family and friends of controls. They coped better, had fewer major grief symptoms and post-traumatic reactions.

Regarding the views of professionals, professional associations traditionally have been firmly against legalisation of assisted dying, but as with the European Association for Palliative Care, it appears that the stance is modified somewhat over recent years and, in 2003, they showed some more interest in, at least better debate and discussion on this topic. A UK survey of2,709 nurses, reported in 2003, showed two thirds believe voluntary euthanasia should be legalised, 31 per cent think that nurses should be able to have a role in patients’assisted dying. Of 397 nurses and social workers in Oregon hospice programmes, only one reported they would have actively opposed a patient’s choice of assisted suicide in most or all cases.

Even though not all of them support the Death with Dignity Act, they are all willing to care for patients who make this choice. The US surveys show that between 31 per cent and 60 per cent of primary care physicians, depending on the survey, believe that physician-assisted suicide may be ethically permissible for terminally-ill competent patients. Of 318 Oregon psychiatrists, 18 per cent saw

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J Garland


physician-assisted suicide as never acceptable, 13 per cent not acceptable for them personally and the remaining 69 per cent considered that it was morally acceptable under certain circumstances.

Finally, perhaps, it might be worth mentioning that many Oregon physicians report that since the passage of the Death with Dignity Act, they have made efforts to improve their ability to care forterminally-ill patients. They arc more likely to refer these patients to hospice and believe that hospice is more accessible since the Act came into force.

The Chairman: Thank you very much, Dr Garland. I am conscious that is a highlight of the report, and the full report with the references and the bibliography will be available in Hansard, sir. Thank you for that

Dr Garland: Thank you.

The following is the fiiU report submitted by Dr Garland:

May 5 2004Evidence to Select Committee of the House of Keys on Voluntary Euthanasia

Jeff Garland

'Throughout history, any Idea worth its salt has been guaranteed to cause widespread offence. Everything from universal suffrage to organ transplants, from contraception to legalised divorce, was once considered ah offence to pubttc decency* (Furedl, 2004).

'The good death'

Cultural norms about'the good death' depend on the extent of secularisation and of Individualism within a particular culture. Although palliative care often distances itself from organisations supporting voluntary euthanasia the two do have one thing In common. Both And support In Individualistic societies that promote personal autonomy - the right of Individuals to make their own choices about how they should live and die.The question of how to die well today Is how to live for months, or even years, knowing that we are dying. This question is what both the palliative care and the voluntary euthanasia movements are addressing (Walter, 2003).The view th at patients should be able to choose the manner and timing of their death Is gaining support within an Increasingly secular society with an Individualistic and utilitarian ethos (Mak et al, 2003).In a British Medical Journal poll 692 respondents voted oh the three most Important characteristics of a good death, lay people (171) selected freedom from unpleasant symptoms, choice over timing of death (with possibility of bringing death forward), and choice over place of death. Healthcare professionals (521) picked: freedom from unpleasant symptoms; freedom from heroic medical interventions; and choice over place of death (Clark, 2003).Some patients may never accept their end calmly, and may not wish to be pain free If Its cost Is to have consciousness and control diminished. The concept of a patient not wishing to be pain free and peaceful is so far removed from the health care professionals' usual notion of good that they may discount the patient as non-rational.To pressure patients to have what professionals would call a good death Is Inherently medically paternalistic. The interests of professionals and patients may not always coincide. A good death is one that is considered appropriate by the patient and accordingly requested by them. Padents could well argue that the duty of health care Is to ensure resources and skills are available for their good death rather than one determined by circumstances beyond their control (Jones & Willis, 2003).

Significance of a request for assisted dying

In Oregon psychologists can be Involved In screening patients asking for assisted dying. Ninety-seven percent of psychologists (Fenn & Ganzinl, 1999) confirm that they would not view such a request as prlma fade evidence of a mental disorder.Research, in which Linda Ganzinl has been a leading figure, shows depression is not a primary motivating factor in requests for assistance to die. This has been demonstrated In studies of doctors, hospice nurses, and padents and families (Ganzinl et al, 2001 and 2002,

Ganzinl & Dobscha, 2003). Indeed, from a psychological perspective, depressed patients would have difficulty In marshalling the energy and determination needed to persevere through the requirements of the law,Research in Oregon shows that the reasons people ask for and receive assisted suicide are many. Most often they Involve Issues of autonomy and dignity. In the recent Sixth Oregon Health Services Report (2004), it is made d e a r that physical symptoms such as pain and fatigue tend not to be the reasons people d te in making a request, although anticipation of worsening physical symptoms may Influence a request Other research has found this to be the case, as well. For example, Jackson (2003) has reported on findings by Ganzlni et al (2002) that hospice nurses and social workers note that a patient's desire to control the circumstances of death Is primary among 21 reasons for requesting a lethal prescription. Readiness for death is ranked second, and wishing to die a t home 'no t hooked up to machines in an institution', third.Palliative care in Oregon Is of a very high standard. The Sixth Oregon report finds that in Oregon In 2003, 93% of patients who died from PAS (physician-assisted suicide) were in hospice care (or comfort care as It Is known in Oregon). The remaining 7% had refused this care or had left In addition, everything is done to ensure that the patient does not need to choose PAS. For example, it is important to point out that physicians initially respond to requests for assisted dying with palliative Interventions rather than lethal prescriptions (Fenn & Ganzinl).This is exemplified by the feet that patients who received PAS stayed in hospice care an average for 49 days, whereas other terminally III oatlents who did not choose this option soent on averaae 19 davs In such care (as reported by Ann Jackson, Head of the Oregon Hospice Association).

Who seeks assisted dying?In Oregon such Individuals are more likely other Oregonians to have adequate financial resources and a college education. The people who actively pursue assisted suldde are focused, determined, strong-willed and stubborn individuals who are slngie*mlrtded and uncompromising in their approach to obtaining a lethal prescription. They particularly value remaining in control and avoiding dependence on others, see little value or meaning In proceeding through a drawn-out dying process, and are extremely sensitive to physicians who appear to discount them by mistakenly labelling them as 'depressed' {Ganzinl & Dobscha).Some are described by physicians as loners by choice, whose views do not mesh with the philosophy of hospice care. They appear more willing to consider palliative or hospice care If assured that assisted suldde remains an option in case of need (Ganzlnl e t at, 2003).Twenty percent of all persons who die by assisted suicide in Oregon are offered hospice care but refuse it (Ganzlnl et al, 2002).Patients actively seeking physician-assisted suicide (they tend to prefer the term ’hastened death1) tend to deliberate about their decision artd openly communicate their Intent to family members.Upon family requests, some are prepared to modify or delay their plans even when doing so prolongs suffering. Deaths tend to be carefully planned In a context of social support (Bharucha et al, 2003). They are of above average socio-economic status, and are not motivated by poor social support or financial concerns. Ready to die, they assess their quality of life as poor.While palliative Interventions lead some patients to change their minds, others experience more care as fuelling their fears of a spiral of Increasing dependence on others. If they are to encourage more patients to change their minds about assisted dying, palliative care practitioners need to develop ways of responding to existential concerns, fear of dependence and lade of control (Ganzinl, 2003).In the Netherlands the number of serious and persistent requests stabilised after 1995 and Is estimated at approximately 5,000 a year. The relative importance of pain as a major factor In requests has decreased significantly, and this has been paralleled by a proportionate increase In concern over severe limitations Imposed by deteriorating health. Fears that the lives of Increasing numbers of patients would end through medical intervention, without their consent and before alt palliative options were exhausted, have proved unjustified (Marquet e t al, 2003).

Mow frequent Is assisted dying?

In Oregon, only 1% of those who die each year explicitly request for assisted suicide (Ganzinl & Dobscha).Assisted suldde occurs only rarely in Oregon, accounting for 6 to 9 of 10,000 deaths per year (Ganzinl e t al, 2002).Physicians grant about 1 in 6 requests for a prescription for a lethal medication, and 1 in 10 requests actually results in suicide. Continuing palliative Interventions lead some patients to change their minds (Ganzinl et al, 2000).

Evaluation of reauests for assisted dvinaMany symptoms given as diagnostic of depression are common In



severe physical or terminal Illness. Requests for assisted suldde are not necessarily driven by depression (Ganzinl & Dobscha).Many important questions about how these should be conducted remain unanswered. An important task has to be done In far from ideal conditions (Fenn & Ganzlnl, 1999).Four legal standards are to be met. A patient must be able to express a. stable choice; understand the risks, benefits, and alternatives of the dedsJon; prove able appredate the Information by applying ft to himself or herself; and be logical In offering rational and understandable reasons for the requests (Ganzlni & Dobscha).

Views of patients and family carers

There Is relatively little research Into the experience of patients requesting assisted dying (Mak et al)Healthcare providers need to respect the views of dying patients, not only regarding cultural and religious attitudes, but also respecting secularism (Neuberger, 2003).Oregon patients and carers value dlnldans who show openness to discussions about assisted dying, expertise In dealing with the dying process, and ability to maintain a therapeutic relationship even when • there is disagreement. They are aware that In a medical culture that views death as a failure, physidans can be unprepared to discuss topics such as dying and suffering. These can constitute an unacknowledged 'elephant In the room', with patient and dlnidan colluding to avoid difficult topics (Back et al, 2002).Overall, ramines or nospice paoents wno receivea prescriptions for lethal medications were more accepting of and prepared for the patient's death, although they were somewhat more likely to report distress than were the families of other hospice patients.Among other topics, patients had spoken of not wishing to burden their families, although In general the families concerned were better able to deal with care-giving and more positive about It than the others' families (Ganzlnl et ai, 2002).Netherlands hospital-based study of family and friends of 78 patients receiving voluntary euthanasia showed them to be less religious and with higher level of education than family and friends of 1S6 controls. They coped better, had fewer major grief symptoms and post- traumatic reactions. Many attributed this to consultation over the patient's choice as having given them a chance to say goodbye more openly than they might have done otherwise (Swarte et al, 2003).

Views of professionals

Professional associations traditionally have been firmly against legalisation of assisted dying, as was the case In the 1994 condusions of the Ethics Committee of EPAC (European Assodatlon for Palliative Care). In 2003 an updated version takes a modified stance, calling for better communication, respect for diversity of opinion, and greater understanding of the many complex reasons patients have for requesting assisted dying (Ganzinl, 2003).in New Zealand, doctors who acknowledged having assisted dying in some cases Identified as being significantly older and less religious than their colleagues denying this (Mitchell & Owens, 2003).A UK survey of 2,709 nurses showed two-thirds believe voluntary euthanasia should be legalised, and 31% think that nurses should be able to have a role In patients' assisted dying (Nursing Times, 2003).Of 397 nurses and sodal workers in Oregon hospice programmes, only one reported they would have actively opposed a patient's choice of assisted suldde In most or all cases. Even though not all of them, support the Death with Dignity Act, they are ail willing to care for patients who make this choice (Ganzlni et al, 2002).US surveys show that 31%-60% of primary care physldans believe physidan-assisted suldde may be ethkally permissible for a terminally ill competent patient. Of 318 Oregon psychiatrists 18% see PAS as never acceptable and 13% as not acceptable to them personally but consider the decision should be up to the individual patient. The remaining 69% consider PAS morally acceptable under some drcumstances, such as those that might be faced by some terminally III patients (Ganzlnl e t al, 1996).uregon psycnoiogists snow nign aegree or support ror assisted suidoe, but also a minority highly opposed. Elghty-two percent (n-345) would under some drcumstances consider obtaining a physldan's assistance to end their own lives (Fenn & Ganzlnl).Many Oregon physldans report that since the passage of the Death with Dignity Act they have made efforts to Improve their ability to care for terminally 111 patients. They are more likely to refer these patients to hospice, and believe that hospice Is more accessible since the Act came Into force (Ganzlnl et al, 2001).

REFERENCES

Back, A.L et al (2002) din I dan-Patient Interactions About Requests for Physldan-Assisted Suldde. A Patient and Family View. Archive of Internai Medicine, 162, June 10, 1257*

Bharucha, AJ. e t al (2003) The Pursuit of Physldan-Assisted Suicide: Role of Psychiatric Factors. Journal of Palliative Medicine, 6, 6, 873-

Clark, J. (2003) Freedom from unpleasant symptoms is essential Tor a good death. British Medical Journal, 7408, 26 July, 180-

Fern, D.S. 8» Ganzlnl, L (1999) Attitudes of Oregon Psychologists Toward Physldan-Assisted Suldde and the Oregon Death With Dignity Act Professional Psychology: Research and Practice, 30, 3, 235-

Furedl, F. (2004J Therapy Culture. Cultivating vulnerability in an uncertain age. London:Routledge.

Ganzinl, L. (2003) From the USA; understanding requests for physWan-asslsted death. Palliative Medicine, 17,113-

Ganzinl, L & Dobscha. S.K. (2003) If It Isn't Depression „ Journal of Palliative Medicine, 6, 6, 927-

Ganzlnl, L e t al (1996) Attitudes of Oregon Psychiatrists Toward Physician-Assisted Suicide. American Journal o f Psychiatry, 153,1469-

GanzJnl, L e t al (2000) Physldans' Experiences with the Oregon Death with Dignity Act The New England Journal o f Medicine, 342, 557-

Garcdnl, L. e t al (2001) Oregon Physicians' Attitudes About and Experiences with End-of-Ufe Care Since Passage of the Oregon Death

With Dignity Act Journal o f the American Medical Association, 285,18, 2363-

Ganzlni, L e t al (2002) Experiences of Oregon nurses and sodal workers with hospice patients who requested assistance with suldde. The New England Journal o f Medicine, 347, 8, 582-

Ganzlnl, L. e t al (2003) Oregon Physicians' Perceptions of Patients Who Request Assisted Suldde and Their Families. Journal o f Palliative Medicine, 6, 3, 381-

Jackson, A. (2003) Oregon's Death With Dignity Act A Hospice Perspective After Five Years.

Jones, J. & Willis, D. (2003) What Is a good death? British Medical Journal 7408, 224-

Mak, Y.Y.W. et al (2003) Patients' voices are needed in debates on euthanasia. British Medical Journal 74.08, 213-

Marquet, R.L. et al (2003) Twenty-five years of requests for euthanasia and physidan assisted suidde In Dutch general practice: trend analysis. British Medical Journal 7408, 201-

Mltchell, K. 8i Owens, R.G. (2003) National survey of medical dedslons a t end of life made by New Zealand general practitioners. British Medical Journal 7408,202-

Neuberger, J. (2003) A healthy view of dying. British Medical Journal 7408, 207-

Nursing Times (2003) Dying Wishes. November 25, 99, 47, 20-

Oregon Department of Human Services (2004) Sixth Annual Report on Oregon's Death with Dignity Act. Office of Disease Prevention and Epidemiology.http://www.dhs.state.or.u5/publlchealth/chs/pas/03pasrptpdf

Swarte, N.B. e t al (2003) Effects of euthanasia on the bereaved family and friends: a cross-sectional study. British Medical Journal 7408,189-

Walter, T. (2003) Historical and cultural variants on the good death. British Medical Journal 7408, 218-

The Chairman: Could I ask you, Dr Garland, if you have any direct experience of working in Oregon or the Netherlands or Belgium or any other jurisdiction that has these systems?

Dr Garland: No, only the UK.Just briefly, about my background, because I launched

into my statement, perhaps, rather early: I have been a clinical psychologist since 1965. Most of my experience has been in the UK. I am currently in practice in a part-time way in the Isle of Man.

Here, I do a variety of things, including providing some staff support to the hospice. So, I have seen something of


http://www.dhs.state.or.u5/publlchealth/chs/pas/03pasrptpdf


the working of the hospice from the inside« but I have never worked in any of these other settings, and I am relying on the professional literature which colleagues who have worked in these settings have made me familiar with.

M r Anderson: I am just building on Dr Garland’s first comment there. What is your personal experience, then, of rendering psychological support to the dying?

Dr Garland: Quite extensive, because much of my practice was with older people. I worked in various departments of psycho-geriatrics and geriatric medicine for many years and a significant proportion of the patients I saw were approaching death and, in some cases, in terminal care. I also rendered some assistance and advice in hospices in Oxford on a day-to-day. basis. So I have had fairly extensive experience of working with people in terminal situations.

Mr Anderson: So would it be fair to say that you have worked then with people who are vulnerable to pressure really?

Dr Garland: We are all vulnerable to pressure, yes, and I certainly say that I have worked with people who are vulnerable to pressure.

M r Anderson: In what ways, then, might someone who is weak and tired from terminal illness be vulnerable to pressure to request to be killed?

Dr Garland: It is difficult to make generalisations. I have never experienced or witnessed anything that could be construed as pressure coming from either myself, my colleagues or any family members. One of the extensive areas of my practice was in working closely with family members of people in terminal care situations, and we had family conferences, we saw people as individuals and nobody ever, to my knowledge or my witness, suggested or exerted any hint of pressure. What they did behind closed doors, obviously, I can only speculate, but I have never witnessed this.

What I have been aware of is that talking about being a burden to others sometimes reflects reality, in the sense that a great deal of care is given to such patients, and also that it is a way of opening up a conversation about their own feelings. It is a socially acceptable and rather British way of saying, ‘I am terribly worried about what other people are going through and then, with persuasion, they can be encouraged to begin to talk about their own concerns.

Many patients do not begin by talking about their own concerns, because they feel it would be selfish, inappropriate and unpleasant to do so. So, they advance concerns about others ’ burden, as a way of sometimes getting round the fact that they too have got concerns, major concerns, and this is perhaps one of the most important factors why people often raise this issue of burden.

Mr Anderson: Can you describe, then, any other sort of emotional pressures that, real or imagined, might put pressure on those people? Do you think you have covered it by what you have said?

Dr Garland: Let me just try to reflect. Can you give me any suggestions as to the kind of pressures you are

considering?

M r Downie: Yes, I have one that I would like you to answer if you could come in here. If you look at the profile of the countries which have allowed legislation to be introduced for euthanasia - Switzerland, Belgium, Oregon, USA - I wonder how much pressure is on people who cannot afford extended health care. Their savings are coming to an end. Perhaps they do not have a medi-plan in place and, if it is a single person who, perhaps, does not have any dependants, it may be an easy option to go down the route of assisted dying?

Dr Garland: This was a fear in Oregon, but the research which I have just summarised, very hastily, suggests that the people who ask for assisted dying do not match that kind of profile. They have better resources, better family links. It was a fear and research which was directed to try to explore this fear seems to indicate, at least in Oregon, that is not the case.

So the poor, the unresourced, the lonely are not pressured disproportionately to asking for assisted dying. I am afraid I do not know what research has been done on that specific issue in the other countries you mentioned. There may well be research.

M r Downie: I am not suggesting that they would be pressured, but what I am suggesting is: in this country, in the UK and the Isle of Man, in particular, we do have a robust health service. (Dr Garland: Yes.) We do have an excellent system, throughout the UK, and in the Isle of Man, of hospice, (Dr Garland: Yes.) in which all of the financial needs and the palliative needs of the patient are taken into consideration, really at no cost

Now, we saw a recent situation in Switzerland where a person from the UK went off with their wife, they decided that they had had enough and there was a significant cost involved in that (Dr Garland: Yes.) That is why I asked you the question, to see if there was undue pressure from people in these other locations, where there were no Health Services, to say, ‘Well, if my end is coming, why should I be forking out money for health services and palliative care when I can just take the easy option?’

Dr Garland: I do appreciate what you are saying, and I appreciate your concern. I have got no reason to suppose that is the case, but, in certain cases, it might be. I cannot exclude it

Mr Anderson: Just following on, then. How do you think that patients who are dying feel about the relatives that are grieving at the bedside?

Dr Garland: There has been, in my experience, a huge spectrum of feelings and reactions expressed in my presence by such patients. Some, for example, want to cut themselves off and detach themselves from the situation, and so try to engage as little as possible with what is going on around them. Others are able, with a great deal of effort, to maintain social contact and emotional contact with their family members.

Family members very often try to suppress the grief, out of consideration for their relative and tend to grieve in private, and bottle things up. People often collude with each


Ordl Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 17KCE

other, the patient pretends that he or she is less ill than they actually are and there are glimmerings of hope, the family trying to explain to the patient that there is always hope and each side may well know that this is not the case, but there is a good deal of acting pretence going on, as well as genuine feelings. There is a tremendous mix of feelings going on.

Mr Anderson: So, do you agree that in some way the patient might take a decision based on the feelings that he has or she has for the relatives?

Dr Garland: For the relatives?

Mr Anderson: Because of the state of the relatives, do you think that they would take that action to alleviate the distress that they see their relatives going through?

Dr Garland: That is conceivable. Most of the decision making processes that go on, for example, in Oregon, are done in a family context with very considerable discussion and support from professionals. People’s motivation for taking decisions is gone into in an exhaustive way over a period of as much as time will allow - sometimes for several weeks or longer. So, there is awareness that people have many reasons for making decisions and as far as is possible, I understand from what I have read, every effort is made to encourage people to explore the full range of reasons for having come to a decision.

M r Anderson: Have you ever known somebody who is apparently fully, mentally competent, and who has ever wished to take that action, then later has changed their mind?

Dr Garland: Yes, I have, and I have also known people initially say that they have no possible thought or wish for having an assisted death, and changing their mind in the other direction. It is very common, in my experience, for people to change their minds in this very difficult period. So, change can happen both ways.

Mr Anderson: Do you see any danger in doctors, carers or relatives trying to manipulate patients into requesting such action, for their own motives?

Dr Garland: I think there is danger in almost everything we do, depending on how you look at that term ‘action’. You are asking me for a matter of opinion, and from what I have seen of my medical and nursing colleagues, I think that the danger is extremely slight. I have confidence in them that they would not stoop to this action, but I can only speak for the people I know and have known.

Mr Anderson: Can I just follow on, then. From your professional stance what possible negative impact might there be from a patient choosing to be killed, on (a) their doctors, (b) their carers, and (c) the family and community at large? What effect would it have, and do you see it having on them?

Dr Garland: Well, of course, one is asking for speculation here, because this is not happening in my experience.

I think that the future, essentially, is almost unknowable, but I would certainly say that it is not impossible that

somebody who chose assisted dying, that their relatives subsequently might reflect on this choice, feel that this choice reflected on them and take it very much amiss, but I have also worked with patients’ families subsequent to the death of the patient and found such families extremely bitter and sad because the opportunity of assisted dying was not available to the relative, and the relative suffered a great deal in the process, and they did too, and they make statements to me like, ‘You wouldn’t treat a dog the way so and so has been treated.’ So, again, it goes the other way, too.

Mr Anderson: If the legislation was then brought forward, what message do you think this would give to severely disabled, the sick and the elderly who know that they are burdens to others?

Dr Garland: 1 think it would give a number of messages, and different messages will be heard by different recipients. I have spoken to some disabled, sick and ageing patients in and around this town, and a good number of them have told me that they wished the law could be changed because they would like to have this option in front of them.

Some of these people suffer from progressive wasting illnesses, and dread the thought of becoming profoundly incapacitated. They are already severely incapacitated, and they tell me that, ‘If only this choice was available, I would feel easier in my mind - an option I don’t expect ever to take and I might well never take it, but I would like this choice.’

So I think the message - one message - that would come from this would be that, at last, the authorities, the all-powerful ‘they’, are prepared to consider that this choice might need to be offered to a few people who desperately, need it.

And regarding the likelihood of such choice being offered, as you have heard from the Oregon figures and have probably worked out for yourself, if the same pattern as Oregon occurred here, it would be less than one person a year who would actually make this choice and have this choice granted It is a very small number.

I agree that other people would listen to this, and would say, ‘Oh dear, another nail in the coffin of respect for human life,’ but I think the message really depends on the hearer, so I think that there would be different messages coming from this - some would be messages of hope, others would be a message of something less than hope.

Mr Anderson: Are you aware that disabled organisations are opposing voluntary euthanasia?

Dr Garland: I am aware that some of them are. We have heard from the nurses’ representative, nurses organisations oppose. The medical organisations oppose. A lot of organisations oppose. They need to oppose for a whole variety of organisational reasons, not all of which, necessarily, reflect the needs of an individual patient.

I am very sceptical indeed about organisations which pontificate. They have to set down rules and standards, but where is the individual in their deliberations? We have heard a lot this morning about what the organisations would

- think, what the professionals would think, and I think that if organisations oppose something that an individual patient wants desperately, then maybe the organisation should start questioning itself about its right to represent such patients,



and the organisations and other people.

M r Downie: Just to come in on the back of that, then, we have got something of a dichotomy here, because, at the moment, healthcare in general is supplied in this country by the state. If it were possible to introduce a system where a person could be medically assisted to terminate their life, would it not make sense to have that option available carried out by licensed practitioners or charitable organisations who are completely outwith the Health Services, and then there is no clash of conflict about carers and problems with the BMA and other organisations?

Dr Garland: I think this is certainly a possibility. Organisations like Dignitas in Switzerland may or may not be verging on what you are considering.

I think the important thing, certainly, is first to look at the principles which you are engaged in looking at, at the moment, but that might possibly be an option.

M r Downie: It would overcome this problem of the ethics where you have a state-run organisation which is putting vast amounts of money into people's healthcare and if there was, as I say, a route where a group could work independently from the Health Services it might be more... I understand that is the system that they actually have in Switzerland.

Dr Garland: I believe that is the case. I certainly think that could be a possibility.

Mrs Hannan: Could I ask why so few people who are terminally ill actually commit suicide themselves?

Dr Garland: It is certainly very unusual. I have known of only one case in the Isle of Man in the last three or four years: somebody who managed to kill herself while at the old Noble’s Hospital, and she was in total despair about confronting the consequences of her rapidly growing cancer. It had been proposed to her that she should go into the hospice for advice and care, and she interpreted that as meaning the beginning of the end for her, and she took another option.

I am not saying her decision was anything to do with the offer of hospice care, but she found it totally impossible to confront the reality of increasing pain and disability.

But it is extremely rare. I think, being human, we like to cling on to hope. Every minute is precious. We do not want to take a major step. We hope against hope. We are incurable optimists, usually, and we hang on like grim death before the prospect of grim death, but it is certainly very surprising- it does happen and as I have suggested here, such people tend to be very strong-willed, very determined, perhaps, and very stubborn - maybe a profile of people in the Isle of Man, I do not know, but the Isle of Man and Oregon may be similar in some respects.

M rs H annan: On the bottom of page 2 of your submission, you have got this where patients for assisted suicide stayed in hospice for 49 days, whereas other terminally-ill patients who did not choose the option, spent on average 19 days in the hospice. (Dr Garland: Yes.) Do you think that people who make this request are happier with their situation? Presumably...

Dr Garland: I think one thing that is reflected by those

figures is that greater time was spent in hospice care and much of this was expended on the process of assessment, interviewing and decision-making, agonising, and this may be a reflection.

In other words, I think what these figures reflect are that those who had made a very determined insistence on receiving assisted dying, were encouraged to spend much more time in hospice than the others because this decision it was felt needed to be investigated very thoroughly and this is what the figures essentially reflect. It does not necessarily mean that they enjoyed being in the hospice. I think that this is all community-based hospice care. It is not an institution.

Mrs Hannan: Right, thank you. You were talking before about people who made the request Would this normally be terminally-ill patients?

Dr Garland: Yes.

Mrs Hannan: Patients who would die anyway?

Dr Garland: I believe in Oregon it is within six months, something like that There is a time specified. We are talking here about, and 1 understand the Committee is looking for, a proposal which is limited to terminally-ill patients.

Mrs Hannan: Right, so they would have the view, anyway, of death coming in - they would know that nothing could be done except terminal care, palliative care, which would lead, ultimately, to their death.

Dr Garland: They would know; whether or not they would accept that, inside, is a different matter, but they would know intellectually, yes.

Mrs Hannan: Sure. Are there ever any health - 1 suppose ‘health’ is the right word - reasons for people recovering in hospice if... ?

Dr Garland: You mean the terminal illness goes into remission? I have never actually seen such a case. Again, I do not know what the evidence is. To be honest, I think it would be pretty rare, but it is possible.

I have certainly seen people in the hospice care going downhill extremely rapidly, because they did not want to be there. I remember a patient on the Isle of Man who I saw a couple of years ago, who was extremely angry because she was suffering severe pain from a very rapid, lymphatic cancer, and I was asked to see her because the hospice were very concerned. This was a very angry patient and her anger was distressing all around her, and they felt it was an untoward and unreasonable anger. I must admit that, if I was facing such a death, I might well be angry myself, but it was felt very difficult to manage her in the hospice. Certainly, her symptoms had flared up and become much more acute and she died-within a few days. One cannot say any more than that

There are people who do not want to be in the hospice. There are also, of course, many people who do and the hospice is a marvellous movement, and for 98 or 99 per cent of people, it does a great job, but for a very small fraction there are patients who do not want to be there, who want something else which they cannot have, namely assisted



dying, who just want to escape from the whole process and, for them, it is extremely difficult to adapt to hospice, no matter how splendid the care is - and the care is usually extremely splendid and excellent.

M r Rimington: If there was to be legislation on the Island, what would the safeguards that you would consider necessary for such legislation to exist?

Dr Garland: 1 think there are a number of excellent safeguard schemes already in place in an area like Oregon. It is very clear to me that such a very important decision needs to be given sufficient time and space. It is, of course, extremely difficult to discuss this in detail, because the time available to patients facing death is sometimes very difficult to predict, but, I think, at a bare minimum, you would need a significant period of time for reflection and discussion. You would need a very thorough assessment of the individual, and of all the surrounding pressures on them, by an impartial procedure, and you would need opportunity for people to look at alternatives, you would need a review of the existing palliative care that was being given to make sure the optimum palliative care was being given.

So* basically, I am saying time and space, and it is extremely important to have safeguards, and is also very useful, I think, to have at least two professional advisers involved, to reach agreement, and you need to be very clear that it is a sustained and persistent wish by the patient that this should take place.

Mr Rimington: Have you looked at all at the differences in the legislation between say Oregon and the Netherlands?

Dr Garland: Not in detail. There is research which has been done from the legal framework, and I think I mentioned in my original written submission, there is a book by an author called Otlowski which looks very carefully at the legal background and I think it would be well worth, if you have not already done it, somebody on behalf of the Committee abstracting her ideas.

There is also, I think, John Keown from the University of Cambridge, who puts a different perspective on medico-legal issues. Otlowski, broadly speaking, is for, Keown, broadly speaking, is against change in the law, and I think that if you have the opportunity to read and abstract these two texts, it would be well worth doing so, because they do give very useful background on the medico-legal, ethical frameworks which they are much better qualified to discuss than I am.

Mr Rimington: There is a lot of discussion in many of the submissions that we have had, and, I think, the commonly used term of ‘vulnerable’ or 'vulnerability’ - and you have explored that to some extent already. I just wondered if you would care to expand on that: on what depth do you think people are vulnerable and how that might or might not be addressed through any safeguards that exist?

Dr Garland: I think vulnerability has become a kind of ‘in’ term in our culture, in the last few years. Stress of all kinds experienced by all sorts of people in all sorts of circumstances. I believe, to take an extreme example, that a company that offers insurance against your pet getting sick will also for an extra premium offer to provide or to finance your receiving counselling, once your cat or dog or

budgerigar dies. Vulnerability has spread through every area of life, and we do tend to perceive it as increasingly as being vulnerable and under threat, and I think some of the most important antidotes to this are openness and people being convinced that those who make laws around the country are concerned for the rights of individuals and will respect those rights.

I think, to know that you are living in a democratic society, in which issues like assisted dying can be looked at openly, is a very important ingredient to helping people to feel less vulnerable, because they know that there are people, such as yourselves, who basically care about their rights and their needs, and will do what they can to see that those are safeguarded

So, I think that is a really important issue for us all to be aware of, health professionals and politicians alike: openness to discussion and debate, honesty and directness, and consulting people for their opinions is not done as often as it might, for these are very important antidotes for vulnerability.

I do take the point that it is very reasonable to ask how will this affect vulnerable people, and the answer is, I think, that we are all vulnerable to a greater or lesser extent Some of us might become or feel more vulnerable as a result of any change in the law. Some of us might feel less vulnerable to the extent that we are given an extra safeguard, an extra right, an extra fall-back position, so I think these things may balance out

Mr Anderson: Just following on from Mr Rimington, if there was a choice, do you think the law should aim to protect a large number of vulnerable patients, or remove protection from them, for the sake of the few that feel their future suffering may not be relieved?

Dr Garland: I think the law should do both. I think the law should seek to express a reasonable amount of concern and protection for the people who want reassurance, and if appropriate safeguards were built in to a change in the law, and the change in the law was very clearly made, and clearly reflected the will of a substantial majority of people on the Island, then those who might fear, as a result of the law, their fear at least would be lessened

I do appreciate what you are saying: fear is a veiy important driver of human behaviour, and, in answer to your question, I would say that, basically, the law is for individuals as much as it is for vast masses of supposedly vulnerable people, and if the law cannot exert itself to serve individual needs, even if these needs are quite rare and may not be freely expressed, then the law is reduced and diminished as a result of that. The law really exists for individuals as much as it does for masses of people seen as vulnerable.

Mr Anderson: Would you agree that the law is for protection of vulnerable people?

Dr Garland: The law exists for many reasons and one of those is for protection, but vulnerability can be felt independent of anything the law does. There are people who may well feel vulnerable if they see something which is a very minor instance in their everyday life.

I think the law does have a right to protect vulnerable people but there also is a right to represent individuals and individuals’ needs, so I think there is a conflict here. I think



the conflict may be resolvable but I do agree that there is a conflict.

M r Anderson: Could you say what limits you think society should place on an individual’s autonomy?

Dr Garland: I think that autonomy has to be exercised in a responsible manner, so if, for example, Harold Shipman chose to exercise his autonomy, it was in a way that was disgraceful and society needed to register this very clearly; unfortunately, it did not for quite a long time, but I think that any autonomy bears with it responsibilities, as well as rights. It is a complex matter and so I certainly think society and law does need to rein us in, in some respects.

But regarding choosing your own dying in a considered and persistent wish with appropriate safeguards, I do not think the law is entided to stop an individual doing that

M r Anderson: You touched on Dr Shipman. Do you think that if legislation was introduced, it would be more difficult for the authorities to discern between what is legal and what is murder?

Dr Garland: I think in some respects it may well be easier because at the moment there are a lot of grey areas, even within the existing law and areas of uncertainty and debate. For example, what happens when somebody who is terminally ill becomes increasingly weak and frail? At some point, a decision may well be made to increase their medication. Having been on a morphine drip myself in the course of physical treatment, a few years ago, I am well aware of the strange things that morphine can do to your consciousness and awareness of what goes on around you.

During the process of terminal illness, in some cases a decision is made to increase the medication to achieve more profound sedation. This decision can be taken in the absence of consulting the patient, if the patient is so doped and befuddled that they cannot respond, so the decision is taken and it is not uncommon for this to be done.

That, in itself, some people consider is a questionable procedure. It is open to some doubt and uncertainty, so I am saying that within the existing law there is already doubt and uncertainty, and I think that, if the law could be clarified with appropriate safeguards, there would be less uncertainty, it would be a lot clearer than it is now.

Now, there are a number of grey areas; it is very apparent to me there are grey areas within the existing law.

M r Anderson: And would you agree that there is very little evidence of doctors, practising, being prosecuted in these grey areas?

Dr Garland; Practising being put... ?

M r Anderson: There is very little evidence of doctors being prosecuted where they seem to go over the line in this grey area.

Dr Garland: I am really not qualified to comment on that, because I have not followed this kind of evidence very thoroughly. I am just saying that I am aware of grey areas. I am not aware of the response that the law habitually makes to these infringements; it may vary according to area and judgement.

Mr Anderson: Just one final one then, Dr Garland. In your paper on Oregon, here, it states the relevant importance of pain as a major factor in requests has decreased significantly. I understood, from the legislation being talked about in the Isle of Man, that was the major reason why people were wanting voluntary euthanasia legalised, so do you not think this is quite contrary to that?

Dr Garland: Not really. I think it could reflect better hospice practice. Over the last few years in Oregon with this change in the law, the Hospice Association there reports that they are better supported than ever, and that doctors are giving them more referrals, and this may well have an impact on the levels of pain reported, but in my experience, wish for assisted dying does not, by any means, always link up with fear or concern or actual experience of pain as such. Pain is a very subjective experience; it is very difficult to measure and assess. There is a whole complex of reasons why people seek assisted dying; pain is one of them, but is not by any means the only one.

M r Anderson: So what you are saying, effectively, then, is that the scope of voluntary euthanasia should be widened

Dr Garland: I think the scope of voluntary euthanasia should be for people who are terminally ill who wish, persistently and repeatedly, for assisted dying, who give clear reasons for that, who do not appear to be mentally incompetent I think that the scope for voluntary euthanasia should be very carefully controlled. I do not think that it should be widened in any major way.

M r Anderson: Are you saying it should be regardless of pain?

Dr Garland: Not regardless of pain; I think pain should be a factor, but what I am saying is that people focus perhaps overmuch on pain, and the argument is: ‘If only we could get pain management right, then this whole bogey of these people wanting assisted dying may well just disappear and creep away’. Pain is a factor, but it is not the only factor; psychological pain is as important sometimes as physical pain, and there are many other factors involved.

I am certainly not downplaying pain, but I am just saying that pain is one of a number of factors influencing people to seek assisted dying, and one should not just limit one’s perspective only to pain - but it is very important

Mr Anderson: If I might continue, then, do you think that doctors ever make mistakes in diagnosis in determining, in predicting the life span left to a patient?

Dr Garland: Well, I know somebody now, a friend of mine in the Isle of Man, who is skipping around like a spring lamb, and a couple of months ago he was told perhaps he should seek a refund on his holiday at Easter because he would not live to enjoy the holiday. So, doctors can make mistakes.

Mr Anderson: And would you agree that depression in terminal illness is treatable?

Dr Garland: If depression is a factor, it is sometimes


Oral Evidence SELECT COMMITTEE, WEDNESDAY, 5th MAY 2004 2IKCE

treatable, sometimes not. Some depression is refractory to treatment, whether it is in terminal illness or in any other setting. Not all clinical depression is amenable to treatment

M r Anderson: Would you say that depression in terminal illness is under-diagnosed?

Dr Garland: I do not think so, not in my experience, because most people are well aware that a number of the key diagnostic features which influence people to diagnose depression are also present in severe, long-term debilitating illness, and that, when someone appears to be say lethargic, unmotivated, preoccupied with negative thoughts, it is not necessarily reflecting clinical depression, but it is reflecting the reality of their physical status.

It is veiy difficult indeed to disentangle mind and body. I spent about 40 years trying to do it and, obviously, both are important, but I would not necessarily accept that people do have any major difficulty in diagnosing depression in terminal illness, because many of them are aware that the presentation of a patient is a mixture of features often including a realistic reflection of their physical condition as much as any mental distress - it is very difficult to separate them out No, I think that depression may be speculated on in many cases, but careful diagnosticians are usually able to determine whether or not clinical depression is present They may well attempt to treat it - it will not always be successful.

M r Anderson: Do depressed people, then, often express a wish to die?

Dr Garland: No, in my experience not. People who are clinically depressed sometimes express this wish but very often not, and sometimes they do kill themselves, but very often not, because people who are depressed, actually, are so wrapped up in their depression, they are almost clinging to it, and find it very difficult to conceive they can do anything about it; they feel powerless, so, therefore, many of them exclude the idea of suicide. They may mention it, because it gets attention from other people around them, but few people, in my experience, who have been clinically depressed then proceed to kill themselves.

Mr Anderson: How can you be sure of the difference between depression and mental competency?

Dr Garland: It is extremely difficult There are ways and means of assessing mental competency, there are ways and means of assessing depression: neither are 100 per cent reliable in every single case. There will always be disagreement, but what I am maintaining is that the literature suggests that many people who are approaching death do not necessarily become depressed as a result of that, many people who may express ideas that sound depressing on the surface of it are reflecting their own physical state and their own realistic uncertainties.

Also, I think it is important to try to understand this, that there is still, I think - and I probably have not shaken the opinions of some members of the Committee on this - there is still the widespread, underlying feeling that if somebody really expresses a wish to die, this must reflect some kind of serious pathology, they must be mentally ill, because it is

not the sort of thing that people do, or should do, to express a determined wish to die, with somebody to help them,

I have been with people who have expressed this wish, in spite of knowing the law prohibits it, and, in my experience, they were not clinically depressed - they may have become so, in due course, when it sank in upon them that their wishes could not be met Disappointment and depression are often allied, but I do feel it is an assumption that is easy to make that, ipso facto, if somebody seriously wants to die, they must be depressed and, therefore, the depression must be treated, then make it better, then everything is going to be fine. I do not think it is that simple.

Mr Anderson: Do you think it is discriminatory, then, between allowing somebody to have voluntary euthanasia and somebody that is not, when the line is so fine between diagnosis of depression or mental competency?

Dr Garland: I think it could be regarded as discriminatory, but if you consider that mental competence and depression need to be investigated, before a wish to be for assisted dying could be seriously looked at, then you have to have modes of assessment and all assessment is discriminatory. It separates out some people from others, and no assessment is 100 per cent reliable; we simply do our best with the tools available. The alternative would be to say that we must not assess anybody, because we cannot be right 100 per cent of the time, and we are afraid of separating people out, into more than one group, and, really, we are not God, we are only human, we do what we can with the tools available.

So, I do not think it is necessarily discriminatoiy. I think any process of assessment does involve a certain degree of separation. I admit that this assessment cannot always be100 per cent reliable; we simply have to do our best with what we have got

The Chairman: Dr Garland, can I just ask you a few questions? Is patient-assisted suicide, in your opinion, complementary to the hospice care system?

Dr Garland: Well, it is complementary in Oregon, and, I suppose, it is an integral part of it. To a certain extent, it is widely recognised and accepted, but what I have suggested is that hospice care is excellent for very many people, but there are others for whom an alternative option could be very advantageous, so I think one would say it could well be complementary.

I understand and respect the statement, I think, that the hospice has already made, that their ethos would not permit them to entertain assisted dying. I can understand that

M r Anderson: But the hospice or care system-comfort system, sorry - in Oregon that you described, does that recognise and acknowledge the views of patients who, for whatever reason, are opposed to the principle of patient-. assisted suicide?

Dr Garland: Oh, yes

M r Anderson: And by the same token, does it acknowledge and recognise the views of health workers who are opposed to the principle of patient-assisted suicide?

Dr Garland: Yes, it certainly does. In the research I have



mentioned, only one of more than 300 welfare workers said that they would be opposed, in almost every conceivable instance, to advising somebody on assisted suicide.

The Chairm an: So, it is a model that covers that spectrum?

Dr Garland: It appears to do so, yes.

The Chairman: And is there any experience in Oregon, with the safeguards they have, with any abuse of vulnerable groups, as we have heard them described earlier?

Dr Garland: None that I am aware of. As I already said it is not inconceivable that people could feel under pressure but if anything, the more socially advantaged groups seem to be the most passing in their wish for assisted dying, but it is a very small number, we are talking about, maybe a fraction of one per cent.

M r Anderson: Given.the lack of legislation here and in the UK to allow patient-assisted suicide or the like, has your professional practice been influenced negatively, i.e. have you been involved in less holistic or patient-centred care than you would ideally have wished to have provided?

Dr Garland: Well, certainly, I have in many different cases, I have dealt with the casualties of the system: a chap who, when he was refused medical assistance, who was chronically ill and in hospice care, when I saw him, tried to kill himself. He succeeded in blowing away half of his face, and I was trying in more ways than one to help him pick up the pieces, so I have seen the casualties of the system.

I have also seen people grasp at all sorts of straws of a quasi-medical holistic care, some very fringe medical attempts or systems of counselling or spiritual support which were not grounded in any very clear principles. I think people grasp at all sorts of straws.

M r Downie: I would just like to ask you, as a psychologist, one of the basic points of English law, really. A lot of the decisions made in these sorts of areas depend on those words 'being of sound mind’. I would have liked, perhaps, if you could explain to us, when you would feel that a person is in a position to be of a sound mind and, therefore, able to make a decision about the termination of his life, or assisted dying, before he gets into the ethos of morphine and shock, and all sorts of other things like that.

Dr Garland: Well, I think there are many ways of approaching this. One way would be to encourage more people to make advance directives of living wills about their future care, and the process of this. It would be very helpful for them to have an independent counsellor or supporter who would discuss with them, and with their lawyers the implications of this, and for people to reflect on their dying in advance of the process.

I think that is very important, in other words, to be able to issue and reason out and frame directives as to what they wish to do. I find it not easy to grasp the concept of soundness or unsound mind, myself. I do not know anybody whose mind is 100 per cent sound, to the standard that we all can be irrational, we all have our prejudices, we all have our fixed beliefs, we all have our skittish moments, and the notion of

soundness versus unsoundness is, obviously, important in law, but in practice very difficult to determine.

In practice, I would need to have a conversation with somebody over perhaps a period of a number of hours spread over a number of days and I would need to ask a number of professional questions and I would need to consult with their permission with people close to them who will give a different perspective on their behaviour, so I think you cannot assess the soundness of somebody’s mind without talking to their nearest and dearest, and their social support system, as well as to themselves.

I think with the kind of dialogue which is clear and coherent, one can be reasonably certain and confident at the end of several days of interviewing and formal assessment, that one has a picture, but this is not something that can be done in five minutes.

I do not know whether that answers the question, but it is extremely difficult, Mr Downie, to really pin down what ‘sound mind* actually is.

M r Downie: Going back to the living will issue, then, obviously, people make provisions for their future. If a clause was to be put in that should they be diagnosed with a terminal illness, it is their wish that they should be able to have assisted dying?

Dr Garland: I think that might come if there is a change in the law. However it would obviate the need, if possible, to have an up to date assessment closer to their death, if that were possible. In other words, if people do change their minds over time, and even with a living will and assisted directive, if possible, but it is not always possible, and if it was not possible, then certainly it is conceivable that one should be guided by the advance directive, if somebody had opted for assisted dying.

M r Downie: My problem with this is, as I indicated earlier, I can understand that being set up and the person having a living will, but my problem, right from day one, with this is that, when you are running a state health system, it is very difficult to find a way where the systems overlap. Because, if you look at what happens in the United States, quite clearly medicine is a private issue. These clinics that have been set up, are on a private basis; they are not state owned and operated.

The same situation is in place, 1 believe, in Switzerland. I am not entirely sure what happens in Belgium, but there, again, medicine is a thing that is purchased, or you take insurance for; it is not part of the state-run system and that is where I think we have to be clear as to how these two areas marry up, really, so that the state system really is not compromised in it

Dr Garland: I think the Netherlands may be the nearest thing to the UK, if you are looking for a comparison. I do not know very much about the way things are, currently, working out in the Netherlands regarding the overall dynamics of their healthcare system, but it would be well worth seeking the opinion of someone who does know better than us about the lessons that may well be learned in the Netherlands, where I think there is a mixture of private care and state-funded care.

M r Downie: Okay, thank you.



The Chairman: We appreciate your forbearance, Dr Garland, but I think we are coming towards the end.

Dr Garland: I appreciate your forbearance, too, because after about ten minutes of me, people usually feel they have had enough and want to hide under the table, so thank you very much.

The Chairman: If we could turn again to Mr Anderson if we could.

M r Anderson: You mentioned, extensively, the Oregon situation. Have you had any knowledge of the Dutch experience, where it is said to be wider than previously anticipated - in fact, it touches on the slippery slope argument? Have you heard of evidence of that?

Dr Garland: I have heard evidence on both sides regarding that As with so much research, there appear to be conflicting findings and how the results are being interpreted, so from the studies that I have seen and read, I would feel that there are mixed findings, and, at the moment, the picture is still inconclusive. Other people might well disagree with me, but I do hope you have the opportunity to research or investigate this for yourselves as a Committee, what is the actual picture.

The slippery slope is a concept that is often invoked and people have very realistic concern about this and it would be very interesting to know clearly, if one can, what the picture is like in the Netherlands, but my awareness is that there are mixed findings and conflicting results.

Mr Anderson: From what Mr Downie was saying, do you agree that it is more easy to legislate and police if it is done in the private sector rather than incorporating into the National Health Service?

Dr Garland: I think that is a very difficult issue. I have not had much experience of working in the private sector, I have got to admit. I have been an NHS person nearly all my life, with one or two brief interludes, so I really do not feel qualified to say. I am sorry, but I would not be sure about that.

The Chairman: Again, thank you very much, Dr Garland, and if we could extend the same opportunity: is there anything that you wanted to conclude with, or to go back over for us?

Dr Garland: Well I suppose just to say that I think the Committee does have the opportunity, an enviable opportunity - you might not agree with me - to look at this issue carefully, and in an open-minded way, and to see whether a choice can be made that would actually reflect the special nature of the Isle of Man.

We have heard a lot from everybody this morning about the nature of the Isle of Man and its people and its close- knit community, and I think there is a way of resolving this situation, with some change, that would actually strengthen the identity of the Isle of Man, and make people feel more proud to be here, because this is a community which thinks for itself. I think I would like to leave you with that thought

I believe you have an opportunity to engineer something

that is a change, that people will be able to accept and recognise but, being the Isle of Man, there will be lots of people who will criticise and condemn you, whatever you do - if you do nothing, if you do something et cetera - but I think you have an enviable opportunity. I do hope you have the courage to take i t I rather suspect you have, but I would dearly love to be able to see what the result actually is when your report comes out, and I wish you all the best It is certainly a very difficult task. Thank you very much.

The Chairman: Well, that concludes this morning. We will now be adjourning now until two o’clock, back in this room, for the next witness. Thank you.

The Committee adjourned at 12.36 p.m. and resumed at 2.00 p.m.

Procedural

The Chairman: Right, well, fastyrmie, good afternoon everybody. This is the second sitting of the first day of taking evidence for the Select Committee of the House of Keys on Voluntary Euthanasia. We are not limited to issues about voluntary euthanasia, it is about patient-assisted suicide and all die associated matters, but that is the title of the Committee.

For the sake of Hansard, if I just introduce everybody, perhaps for Mr Cusworth’s sake, if you do not know all of us. At the far end we have colleagues, Mr Rimington, Mr Anderson, Mr Downie, I amQuintin Gill, this is Mrs Hannan and we are all Members of the House of Keys; and this is the Secretary of the House, Mr Malachy Comwell-Kelly.

If I could just remind you that we are being recorded for Hansard, so, perhaps, if, for the sake of clarity, we could speak clearly. Mrs Newton, I do not know if, by joining us at the front, you would like to offer any opinion during the session. If that is the case, could I ask that we do not talk over one another, just so we can catch everything that is said, okay?

What we had this morning was another person giving evidence, and he started with a brief presentation, about a quarter of an hour or so, so the last thing we want to do is, obviously, cut short your opportunity to give us your full opinions, but we are mindful of the clock at the same time.

EVIDENCE OF MR P CUSWORTH AND MRS NEWTON

The Chairman: So, having said that, could we hand over to you, Mr Cusworth, and you could, perhaps, introduce yourself, your organisation and can lead in from there.

You do not need to stand.

Mr Cnsworth: My name is Patrick Cusworth. I am a research and public relations director for the pro-life charity, LIFE.

I would like to, firstly, thank the Committee and, certainly, Mr Chairman, for allowing me to speak in representation of the resident members of the Isle of Man. As I am sure most

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr J GarlandProcedural

House of Keys Select Committee on Voluntary Euthanasia - Evidence of M r P Cusworth and Mrs Newton


persons here present will be aware, LIFE is an international charity which exists to promote and provide for the respect for all human life, from the point of fertilisation until natural death. We make no exceptions.

It is for this reason that we believe that the proposals made to permit either voluntary euthanasia or physician-assisted suicide will inevitably and inexorably lead to increased danger towards: patients refusing voluntary euthanasia or a physician-assisted suicide; patients consenting to voluntary euthanasia or physician-assisted suicide; the medical profession itself, and, most specifically, the current relationship between the attending doctor and the patient

Whilst we understand both the motivation and well meaning behind many of those who support a change in the law, examples throughout the world have demonstrated beyond question, we feel, that as Professor Lord McColl, a member of both the previous and the current UK House of Lords Select Committee investigating the safety and practicability of euthanasia in the Netherlands, stated, on his return from the Netherlands:

‘Our visit convinced us that the practice o f euthanasia or physician» assisted suicide would be impossible to police and there would be abuses*.

Many proponents of euthanasia have attempted to dismiss the concept of a ‘slippery slope*, that is, the argument that states that legalised voluntary euthanasia would logically and inevitably lead to practices of non-voluntary euthanasia- where the patient has either not requested or consented to being ‘euthanised’ - or involuntary euthanasia - where euthanasia was carried out specifically against the patient’s wishes.

The increasing body of evidence which has emerged from the Netherlands over the past 15 yean demonstrates the full extent to which the guidelines have been breached and the clear lack of control on the part of the authorities established to govern the practice of euthanasia and assisted suicide. Yet this disturbing lack of control still appears lost on many.

The full impact of the Remmelink reports, which of course, as all, I am sure, will realise, are anonymous surveys carried out by practitioners of euthanasia in the Netherlands, has indicated that euthanasia is, if anything, slipping even further out of control.

The first survey, which took place in 1991, outlined three areas of procedural abuse that were reported to have been taking place in the Netherlands, namely:

‘The widespread practice o f non-voluntary euthanasia; the use of euthanasia even when doctors felt that palliative care was a viable alternative; and the practice by doctors of illegally certifying euthanasia deaths as deaths by “natural causes”, instead o f reporting them as required by the guidelines to the authorities.’

One particularly disturbing feature which was reported by this survey was the fact that 27 per cent - that is, more than a quarter - of cases where euthanasia was carried out, this was deemed to be either non-voluntary, or actually involuntary, in other words, where the patient had not given either express consent or request to die.

Five years later, the second Remmelink report was published, indicating similarly disturbing figures as the previous report. For example, in 17 per cent of the cases where euthanasia had been carried out, there were treatment alternatives. The fact that euthanasia had been carried out,

anyway, went not only against the guidelines that had been issued by the Royal Dutch Medical Association but also against the legal principle established by the Dutch Supreme Court, in the case of Dr Chabot, where it was held that doctors should not perform any form of euthanasia when the alternative of palliative treatment was available. To make matters even worse, however, according to the same anonymous survey, as many as 59 per cent of cases where euthanasia had been performed, had gone unreported that year-1995.

Various explanations have been proffered as to why such a huge majority of cases have gone unreported by doctors, including the suggestion that doctors might fail to report, as they find the reporting procedure ‘daunting and burdensome’. Yet in the same survey, a further 30 per cent of doctors stated that they had not reported such cases, because they had failed to observe the requirements for permissible euthanasia, and 12 per cent of doctors because they felt that euthanasia was a private matter between doctor and patient

. Either way, however, it would seem that despite what many pro-euthanasia advocates have referred to as ‘strict guidelines’ governing the practice of either voluntary euthanasia or assisted suicide once again we are drawn back to Professor Lord McColl’s quote that

‘Euthanasia would certainty be impossible to police, and there would be abuses'.

With regard to probably the most sobering statistic from this survey, euthanasia enthusiasts were unquestionably disappointed to notice that cases of non-voluntary and involuntary euthanasia had dropped only slightly, to 23 per cent, so between one in four and five patients were still being killed without request or consent, despite the tightening of procedures, which in the first place had been proffered as being the tightest controls in the world.

In the light of such statistics, perhaps we would be wise to heed the warning given by Dr Peter Hildering, President of the Netherlands Physicians’ League on a visit to the UK two years ago that:

'One can either open the door to euthanasia or keep it shut There is no middle ground I f you open the door even a little, soon it will be wide open.’

Furthermore, many proponents of euthanasia in the Netherlands have not only admitted to the fact that the slippery slope inevitably leads to forms of non- and involuntary euthanasia being performed, but have actively supported i t As Dr Johannes van Delden, himself a leading supporter and practitioner of euthanasia and assisted suicide in the Netherlands, has admitted:

‘Is it not tme that once one accepts euthanasia and assisted suicide, the principle o f univcrsability forces one to accept termination o f life without explicit request, at least in some circumstances, as well? In our view, the answer to this question must be affirmative*.

To follow this chilling prediction to its logical conclusion, therefore, the practice of non- and involuntary euthanasia will have sinister overtones for any patient unable to communicate his or her own wishes to the attending doctor. For example, neonates, patients lacking capacity to consent or refuse treatment, or patients whose ability to communicate vocally are surely left in an intensely vulnerable position,

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs Newton


and face the prospect of their lives being terminated on the basis of another person’s subjective view of his or her ‘quality of life’.

Dutch guidelines concerning euthanasia or assisted suicide also currently specify that the doctor considering treatment alternatives should engage in formal consultation and not merely an informal discussion with a colleague. According to the second Remmelink survey, doctors had discussed the case with a colleague in 92 per cent of cases. However, in 13 percent of these cases the discussion did not amount to a full consultation. Other figures also indicated that, while consultation took place in 99 per cent of reported cases - and let us not forget that we are dealing with only 41 per cent of cases of euthanasia reported overall - it took place only in 18 per cent of cases that had gone unreported. In addition, even when consultation did take place, in the majority of cases this was with a physician living locally, and the most important reason given for consultation was to gauge views on life-ending decisions, whereas expertise on palliative treatment was hardly mentioned, if at all.

It would, therefore, appear to be impossible to establish an effective, regulatory framework for either euthanasia or assisted suicide. On the balance of such damning reports of the system of regulating the practice of euthanasia and assisted suicide, Dr Nigel Sykes who is medical director of St Christopher’s Hospice in London argued that such proposals would be ‘dangerous* and would:

‘.. .progress to mental illness. Euthanasia without express request would inevitably follow and patients would be made to think that euthanasia is the decent thing to do.’

It is the latter suggestion that is often cause of great outcry among pro-euthanasia advocates eager to decry the notion that legalisation of voluntary euthanasia or assisted suicide would involve patients not wanting to be burdens to others, and, therefore, supposedly choosing euthanasia on this basis. However, an illuminating article written by John Beloff, who is the chairman of the Voluntary Euthanasia Society in Scotland, possibly illustrates this very equally devastating slippery slope effect arguing:

‘My answer would be, therefore, that if there is a duty to die, it is one that arises from our basic human predicament, the fact that we are dependent upon others, and it is a duty we owe to those we cherish.’

When such a perceived ‘right to die ’ can become a social ‘duty to die’ on the part of society or the patient’s family or carers, advocated even by those who lobby for ‘death with dignity’, then, as journalist Matthew Parris argues:

‘I f one man’s Right to Die gives another the Right to Kill, then this Right to KiJl logically means giving the government the right to withdraw Permission to Live.’

Given the level of abuse that has taken and, clearly, is taking place in the Netherlands and Oregon, and while it was temporarily legal in territories in Australia, the intended safeguards set out are insufficient to protect the far greater number of patients who would be placed at grave risk, were these proposals to become law. For this reason, many of those who would be affected most of all by such proposals have already united in their opposition to it: the Disability Rights Commission, Disability Awareness in Action, No Less Human and Help the Aged, all international charities supporting the right to live of the intensely vulnerable have

all indicated their belief that:

‘euthanasia is a minority interest amongst the terminally ill - it is only those who are healthy who want'

such proposals to become law.One of the terms that is widely used by groups such as the

Voluntary Euthanasia Society is that of ‘death with dignity’. However, as one leading proponent of legalised euthanasia or assisted suicide has argued that such a change in the law supposedly:

‘offers the opportunity to select the time and manner o f one’s dying in order to secure a peaceful death, unencumbered by intrusive medical technology. Such a death is perceived as inherently dignified.’

Unsurprisingly, however, results from clinical practice throughout the world have suggested that the process of assisted dying is very much less than the optimal ‘peaceful death’ that the author, I would submit, rather naively assumes voluntaiy euthanasia to guarantee.

For example, one such report on the Dutch experience published in the New England Journal of Medicine has demonstrated that around 1 in 20, that is 5 per cent, of patients who opted for euthanasia, and 1 in 10, that is, 10 per cent, who opted for assisted suicide have suffered from what has been referred to in the report as so-called ‘complications’. Such complications include the patients suffering physical symptoms such as severe pain, nausea, vomiting, loss of bowel control, panic, fits and spasms during the attempted euthanasia or assisted suicide resulting, obviously, in great pain and discomfort for the patient, and, of course, great distress for the attending relatives.

Further technical difficulties associated with both procedures were reported, such as problems finding a vein for the injection to be administered, an inability on the patient’s part to swallow or hold down the medication and so-called ‘problems with completion’. These problems can include the patient waking up from an induced coma or an ‘undesirably long time to reach death’. Once again, while such problems with completion took place in 5 per cent, of cases involving euthanasia, they took place in 15 per cent of cases involving assisted suicide, that is, over one in every seven patients. To support this figure, a study of physician- assisted suicide taking place in the United States in Oregon, Dr Emanuel and others reported that assisted suicide failed in three out of every twenty cases described by American oncologists.

A very relevant question at this point therefore would be to query just why the statistics for such complications and difficulties in completion both potentially resulting in severe adverse and distressing symptoms for all concerned are so much higher in the cases of physician-assisted suicide than where euthanasia is performed. One explanation that has been offered is that, even with medical assistance and advice, the average patient’s obvious lack of expertise in performing a procedure leading to his or her own death, combined with an element of near certain trepidation would be likely to affect the performance of such a procedure. However, regardless of the reasons as to why greater difficulties do occur in cases of physician-assisted suicide than in euthanasia, a vital.point regarding the stated proposals must be highlighted and that is that the proposals that I have seen anyway have specifically focused on the legalisation of physician-assisted suicide as opposed merely to voluntary



euthanasia. It would be more reliable to assume, therefore, that if these were the proposals that were adopted, potential difficulties such as those I have mentioned would be likely to be realised in the higher bracket, if not in even greater numbers of adverse symptoms taking place.

Perhaps, due to the added emotional pressure placed upon the doctor in such scenarios, there can be little surprise that in 21 of the reported 114 cases in which the doctor’s original intention had been merely to provide assistance with suicide, the attending physician decided to administer the lethal medication himself. In just a quarter of cases, therefore, the attending physician had been forced to take part, however willingly or unwillingly, in the practice of euthanasia, transforming the act of physician-assisted suicide into one of active euthanasia.

It might be argued that in cases of physician-assisted suicide, the element of patient autonomy is increased as it is at least, in theory, the patient who takes the final and active steps to terminate life, thereby removing at least an element of responsibility for the patient’s death from the attending doctor. However, given that in both the two studies quoted, as well as others, in just under a quarter of cases of physician- assisted suicide with the doctor feeling obliged to administer the final lethal medication, transforming, as I have said, the act into active euthanasia, it would appear likely that a similar effect would take place here in the Isle of Man, if merely physician-assisted suicide were to become law.

In other words, while physician-assisted suicide alone would be legal, in cases of complications, technical difficulties or problems with completion, the attending doctor would be under enormous pressure to carry out euthanasia- an act which supposedly would be both illegal and also one which the doctor may well have a profound personal objection towards. The cynical question one might raise at this point is whether these proposals were actually intending to introduce full euthanasia via piecemeal means by forcing the medical profession to accept physician-assisted suicide and bringing in full euthanasia later on.

Before I comment, however, on the opinions of the medical profession, themselves, on the prospect of physician- assisted suicide being forced upon them in this way, I would, finally, like to discuss one aspect of the Groenewoud study, which also highlighted a further disturbing trend amongst practitioners of euthanasia and physician-assisted suicide in the Netherlands. In 384 cases, where euthanasia was administered - that is, 72 per cent - the physician who completed the interview was present, continuously, from the time that the first drug was administered until the patient's death. However, this, obviously, means that in 28 percent he was not, and in 10 cases - that is, 2 per cent - the doctor was not present at all, while euthanasia was being administered Instead, a colleague, nurse or family member administered the lethal medication. In cases where physician-assisted suicide took place, the attending doctor was continuously present in 52 per cent of cases, and so, in 48 per cent of cases he was not

It is for reasons such as these, that in last year’s vitally important poll of British doctors, that is, doctors practising in the UK - carried out by the Opinion in Research and Business, through the doctors.netuk website - 61 per cent of doctors stated that they do not want euthanasia legalised, with a further 13 per cent undecided. Most doctors are so opposed, some 76 per cent, that they say that, even if euthanasia or assisted suicide were to become legal, they

would refuse to perform itNot one single palliative care doctor who responded

to the survey said that they would be prepared to practise euthanasia or assisted suicide. A 56 per cent majority also stated their belief that it would be impossible to set out safe boundaries to euthanasia compared to 37 percent who disagreed. Perhaps Professor Tim Maughan, the director of the Wales Cancer Trials Network at Cardiff University, explains the reasoning behind the apparent rejection of voluntary euthanasia and assisted suicide on the part of doctors, when he put it simply that:

‘this is not what wc became doctors to do*.

But Dr Richard Lamerton also propounds that to bastardise the medical practice, by permitting doctors to carry out the very opposite of healing their patients would also have a profound effect on the doctor-patient relationship as it currently stands. He argues that,

‘Most doctors know that if they killed people whom they found it difficult to treat or whose condition they found distressing, no one

. would feel safe with them again. In the Netherlands, where some do kill patients - with or without their consent - 1 have heard of elderly people refilsmg medical attention or hospitalisation for fear o f falling foul o f the physician*

The same survey outlined the fact that the vast majority of doctors participating in the survey support greater development in both hospice and geriatric care. The survey revealed that overall, 66 per cent of doctors considered that the pressure for euthanasia would be lessened if there were more resources for the hospice movement, whereas 22 per cent did not agree and only 12 per cent were undecided

However, less than half of those who do support euthanasia or assisted suicide felt that developments in the hospice movement would have any effects compared with almost three out of four doctors opposed to these practices. Perhaps unsurprisingly again, palliative care doctors were the most supportive of increased resources for hospices.

A recent resolution passed by the World Health Association condemned euthanasia as ‘unethical’ and:

‘contrary to basic ethical principles of mcdical practice and must be condemned by the medical profession.'

This would appear to underline the fact that it is not just doctors based in the UK or the Isle of Man who are opposed to the legalisation of either euthanasia or physician-assisted suicide. There is, in fact, unanimity around the world that both are contrary to the aims of the medical profession because neither can be controlled.

Besides some of the political arguments surrounding these proposals, however, much of the recent empirical data exposes just how irrelevant - and in many circumstances actually counterproductive - the allowance of euthanasia or assisted suicide is for ensuring high-quality care at the end of life. As one leading author has commented,

‘Time, resources and energy are always scarce. Focussing on euthanasia and physician assisted suicide means diverting effort away from the more mundane, but consequential activities necessary to improve end- of-life care for the 90% or more o f dying patients who will never even vaguely desire euthanasia*.

Similarly, it is interesting to note that when the US State of Oregon legalised physician-assisted suicide in the Death with



Dignity Act, a reinterpretation of the state-funded healthcare system was made to allow for the provision of a euthanasia programme. However, palliative care treatments and hospice care were to be strictly rationed and cost analysed. As a result of legalised euthanasia and physician-assisted suicide, the hospice movement and palliative treatment facilities have been left devastated, in both states, as a direct result

As Dame Cecily Saunders, founder of probably the worldwide hospice movement, has stated previously, euthanasia in the Netherlands has left the hospice movement non-existent

Doctor Ben Zylicz, a general practitioner in the Netherlands, goes even further than this, arguing that:

'Euthanasia in the Netherlands has proven detrimental to the practice o f medicine, and is usually avoidable... if you accept euthanasia as a solution to difficult and unresolved problems in palliative care, you will never learn anything’.

Professor Robert George, of the Association of Palliative Medicine, has stated:

‘We’re good at what we do, but we’re not as good as we could be and we’re certainly not as good as we should be’. ■

Therefore, the sort of things which we as a society, particularly here on the Isle of Man, should surely be investigating, is the prospect of improving services for patients at the end of life. Needed reforms include training physicians, nurses and other health providers to communicate better with dying patients, to manage pain, anorexia, insomnia, fatigue and other physical symptoms better. They also include improving - and where necessary developing- hospital-based, palliative care units and consultation services. Importantly, if we want to facilitate dying at home, we need better systems for co-ordinating and delivering palliative care to terminally-ill patients at home.

I have been made very aware during my stay here by members, not only of LIFE Isle of Man, but other members who do not represent this organisation, expressing their gratitude for the way palliative care has progressed on the Island, mainly through dedicated volunteers raising financial support, particularly for the upcoming Mighty Oak Appeal. Again, there is clear evidence in the way money is being raised for the new hospice, that the need for greater governmental support for this hospice is there. The introduction of a Euthanasia Bill, however, would certainly denigrate the wonderful work of the hospice movement, both on the Isle of Man and in the United Kingdom.

In conclusion, therefore, whilst it remains questionable whether there is any system in the world that can fully address the needs and concerns felt on the part of patients suffering from terminal illness, what is clear is the fact that euthanasia does not come anywhere near to addressing these needs; quite the opposite. A legalisation of voluntary euthanasia or physician-assisted suicide will, unquestionably, place patients already in an intensely vulnerable state in an even more vulnerable position of dependency, not in terms of physical and emotional care from those whose very role it is to provide such support and assistance, but dependency in terms of their very right to live. Adoption of the proposed legislation will not allow death with dignity, as many of the supporters of change have argued, but in many cases will actually preclude this. It will also place under perhaps inexorable pressure the relationship between doctor and

patient - something which is as vital in the treatment, both of those with terminal conditions as it is obvious.

While we understand both the motivation and well- meaning behind many of those who support a change in the law, examples throughout the world we feel have demonstrated beyond question that, once again, as Professor Lord McColl stated, euthanasia would be impossible to police and there would be abuses.

For these reasons and many more, LIFE Isle of Man believes that such a change to allow voluntary euthanasia or physician-assisted suicide would be bad for patients, bad for families and bad for the physicians who would effectively be forced to participate in a procedure which they have, overwhelmingly, stated that they consider to be unconscionable. What patients need, in contrast, is an affirmation of their own inherent dignity as human beings and increased support to allow them to live with dignity; not efforts which, however well meaning, will serve only to take away their right to live.

The Chairman: Thank you very much. May I ask before the next question. I notice that Mr Cusworth has read the statement, which I take it, was read closely. It would assist the Hansard transcription if we, with your leave, might have a copy of that

M r Cusvrorth: I can certainly produce several copies for you.

The Clerk;. Thank you very much.

The Chairman: Mr Cusworth, thank you for thatMrs Newton, as a member of LIFE on the Isle of Man,

is there anything you wish to add?

Mrs Newton: I would underline what Mr Cusworth has said about the palliative care on the Island: that we are going to such a great trouble and time to raise money, the people of the Isle of Man, for the Hospice through the ‘Mighty Oak Appeal', as you said, and, as we have heard, in other countries, funding, in fact, has been taken away in the hospice movement where euthanasia has been legalised.

My second point is also as a Manx person. I am very concerned because I have heard a number of people say to me that the Isle of Man will become a dumping ground for this kind of thing, and this horrifies me to think that the Isle of Man will be thought of in such a way.

The Chairman: But otherwise?

Mrs Newton: I just endorse.

The Chairman: You wanted to associate yourself with the comments.

Mrs Newton: Yes, I endorse them.

The Chairman: Could I ask how many people are members of LIFE Isle of Man?

Mrs Newton: We have between 50 and 60.

The Chairman: Across the Island?

Mrs Newton: Yes.



The Chairman: Just on the point that you associated yourself there, are you formally speaking on behalf of the ‘Mighty Oak Appeal*?

M r Cusworth: No, I am not

M rs Newton: No, no.

The Chairman: But both of you made comments that you were associating your interests and theirs as the same.

M r Cusworth; I would state that one of the interests of LIFE has been to provide two baby hospices in the United Kingdom, in order to cater for probably tiie most vulnerable patients of all, where euthanasia has been proposed - that is, neonates who suffer from either terminal conditions, some not so terminal conditions - so we would associate ourselves with the rest of the hospice movement in opposing the proposals.

The Chairman; You are not speaking on their behalf? Let us be clear.

M r Cusworth: I am not speaking on their behalf, no.

The Chairman: Okay, so it is coincidental that your views and their views, on occasion, overlap.

Mr Cusworth: I think we are motivated by the same interests and concerns.

The Chairman: We heard earlier, if I can say, that a supporter of their controlled patient-assisted suicide is also a supporter of hospice, and there was no contradiction in that - would you see that?

M r Cusworth: What I would state is that the hospice movement worldwide has stated, on overwhelming cases, their opposition to the legalisation of either voluntary euthanasia or physician-assisted suicide. Whether individuals who might support the interests of the hospice movement in addition to physician-assisted suicide is something I could not speculate upon.

The Chairman: But you had said that hospice was ‘devastated’, I think was the word you described, in Oregon and Holland.

Mr Cusworth; These were quotes that were propounded by Dame Cecily Saunders, who was the founder of the world’s hospice movement

The Chairman: So, presumably, in your preparation you determined what that devastation was and you can share that with us?

M r Cusworth: The devastation that I actually talked about was the fact that palliative care had been increasingly rationed, as a result of the legalisation of physician-assisted suicide and voluntary euthanasia, where voluntary euthanasia was seen as a form of palliative treatment as opposed to a last resort - even in cases where, as both Remmelink reports did indicate, there were genuine alternatives within palliative care to the patient’s own death.

The Chairman: Is there any more you want to add to that?

M r Cusworth: Well, if I can point out once again that physician-assisted suicide, particularly in the state of Oregon, was provided under Oregon’s medicaid programme. In other words, provided free of charge, whereas the vast majority of palliative care, palliative treatment and hospice care had not only been increasingly budgeted, but patients were, in the majority of cases, required to submit, that is, around three quarters of cases, which I can substantiate, patients were requested to fund either their entire hospice bill or at least a substantial amount of i t

The Chairman: A few more points before I move to my colleagues. What I propose, if this is alright, we will just come at you from many angles, rather than go along the table. You spoke about unanimity around the world against euthanasia; could you define unanimity?

M r Cusworth: Unanimity, on a vote taken by the World Health Association: there was only one dissenting opinion from the view that euthanasia was unethical, and the World Health Association had argued that its members residing, even in states where voluntary euthanasia or physician- assisted suicide was legal, not to practise i t The one and only dissenting opinion from this was the Netherlands.

M r Rimington: Was that association or organisation?

M r Cusworth: Association.

M r R im in g to n : W hat is the W orld HealthAssociation?

M r Cusworth: The World Health Association represents the medical professions from around the world. It is made up of some of the leading practitioners in the UK, it is made up of members from the Royal College of Physicians.

M r R im ington: I mean, what is the basis of representation?

Mr Cusworth: The basis of representation is that the Fellows elected by the Royal College will go through to make up the membership of - certainly the UK’s membership - 1 could not state in terms of who in the Isle of Man would be represented on this basis, but I would assume that it would be the Royal College.

M r Rimington: So, unanimity does not mean that everybody agrees totally on one side: there is a difference of opinion, there is difference of practice?

Mr Cusworth: Unanimity, I would state, I would say, whilst it was pretty overwhelming, that the Netherlands was the one and only dissenting opinion from this argument

The Chairman: So, would that be fair to suggest then or conclude that you would think that the practitioners there are either acting dishonourably or they are acting under pressure, or they are acting in a way which is blinded and misguided, somehow?

M r Cusworth: Well, what I would say is that, if 59 per



cent of cases are not being reported, and 30 per cent... 59 per cent of euthanasia reported in the last Remmelink report is actually going unreported, and many doctors are saying that the reason they are not reporting is because the euthanasia that they are carrying out is specifically going against the guidelines, then yes, I would

The Chairman: Right, my last question, if lean, before I turn to my colleague: you stated you were representing LIFE and they have a very clear and immovable view.

M r Cusworth: 1 am here to represent LIFE on the Isle of Man.

The Chairman: If you can just remind me of what their purpose was, and what is their belief.

M r Cusworth: LIFE on the Isle of Man, as well as in the UK, is an international charity which exists to promote and provide for the respect for all human life, from the point of fertilisation until natural death, providing genuine alternatives where dishonourable practices or devastating practices that would demean the respect for human life.

The Chairman: So...

M r Cusworth: Would you like me to explain a little about some of the alternatives that we actually offer?

The Chairman: Let me just speak. The only concluding point is you have a very... You do not have an open mind to this, you have a very closed partial view, based on the evidence that you have been kind enough to give us.

M r Cusworth: The evidence that I have submitted has been exclusively based upon the fact that I consider, through many years of study, that there is no system in the world - and I would be very surprised if a system could be devised - in which voluntary euthanasia or physician-assisted suicide could be effectively regulated. I do not believe that that exists and I do not believe that even the proponents of euthanasia, would state that this has taken place successfully.

Mrs Hannan: Can I ask how deaths in hospices are reported?

M r Cusworth: In the Netherlands?

Mrs Hannan: No, anywhere.

M r Cusworth: I would assume through the traditional channels, through a coroner i.e. a doctor’s certificate of death.

Mrs Hannan: But you do not know?

M r Cusworth: I cannot speculate on that at the present.

Mrs Hannan: No. How many prosecutions have there been in the Netherlands?

M r Cusworth: As far as I know, only one. This was the case of Dr Chabot who carried out euthanasia, despite

the fact that the patient was not suffering from a terminal condition and there were alternatives, such as palliative care, available to him.

Mrs Hannan: So, although the 59 per cent are being, you know...?

Mr Cusworth: The 59 per cent reported by the Remmelink report: it is important to point out that the Remmelink report is an anonymous survey, so no prosecutions could be derived as a condition of doctors filling out the Remmelink report

Mrs Hannan: When was that reported?

Mr Cusworth: This particular Remmelink report was from the year 1995 and the publication was in 1996, the most recent upcoming Remmelink report will be published this June.

Mrs Hannan: Right So there has been nothing in the last eight years?

Mr Cusworth: There has been nothing since 1995-96.

Mrs Hannan: What is LIFE’S position on living wills?

M r Cusworth: Where living wills are concerned, although LIFE exists, primarily, to preserve autonomy for the patient, we do not oppose the criminalisation of suicide, for example, although, what we would state is that, if an able-bodied person did indicate a wish to die, then the emphasis that would be placed, would be on discovering just why this patient wanted to die, whether there were alternatives available to him, and whether other forms to improve his or her life could be afforded, such as some of the introductions that we have given with regard to women who have been made homeless as a result of pregnancy, such as housing, counselling and other forms of crèche and education facilities. We believe that while it is a patient’s right to speculate on whether treatment -

Mrs Hannan: Yes, I mean, if someone has made a living will, which said, should this, that or other happen... would you respect that? If not at the time, some time before, when they are well.

Mr Cnsworth: Are you referring to a ‘do not resuscitate order’ or a ‘do not treat’ order?

Mrs Hannan: Yes, a final wish.

Mr Cnsworth: Once again -

Mrs Hannan: If something really drastic happens to me, I do not wish to be resuscitated, I do not wish to live like that - that sort of statement

Mr Cnsworth: Once again, it is every patient’s right to refuse treatment, if he or she wishes to do so and that is not a right which UFE would seek to demean, but what we would be very careful of is, in the case of living wills, we would want to be very careful that the patient was fully aware of what he or she was consenting to and the likely implications that would take place if he or she did submit into such a vulnerable state.



Mrs Hannan: You mentioned consent. What consent do people give in hospices?

M r Cos worth: In the Netherlands or in the United Kingdom?

Mrs Hannan: Any hospice.

M r Cusworth: Well, in the United Kingdom, of course, if we are referring to consent to treatment, that would have to be written and recorded consent and witnessed by an examining solicitor.

M rs Hannan: An examining solicitor?

M r Cusworth: Sorry, an attending solicitor.

Mrs Hannan: In a hospice?

M r Cusworth: If in the cases where -

M rs Hannan: I am just talking about consent for treatment

M r Cusworth: Oh, I am sorry, I was referring to cases in the Netherlands, but consent to treatment would be written and recorded consent

M rs Hannan: That they would receive treatment that would help them die?

M r Cusworth: Not in the UK.

M rs Hannan: Yes, but there is a fine line, isn’t there? Do you accept there is a fine line between treatment which relieves pain and treatment which can accelerate death.

M r Cusworth: No, I do not Whilst I -

Mrs Hannan: Are you a doctor?

M r Cusworth: No I am not, but I have spoken to many medical professions who, on a number of occasions, have indicated the facts to me, that the amount of morphine, potassium chloride or any other such drugs which can and have been used to relieve pain, there is such a difference between the amount necessary to relieve pain and the amount that would be needed to kill a patient, so -

Mrs Hannan: How much is that? Do you know?

Mr Cusworth: I could not say.

Mrs Hannan: No, so would you accept that it would be different in individuals?

M r Cusworth: I imagine it would be, yes, but from what I have heard - and I can only speculate upon what I have heard - 1 would still be of the opinion that with the amount of morphine, for example, needed to kill a patient, as opposed to relieve their pain, there would still be a sizeable difference between the two, even in severe cases.

Mrs Hannan: You mentioned a number of organisations

which were opposed to voluntary euthanasia or physician- assisted dying, you mentioned disability organisations: where in the world do disabled people go to be euthanased?

M r Cusworth: Where are disabled people euthanased? (Mrs Hannan: Yes.) The Disability Awareness in Action Group in particular researched a study taking place in the Netherlands and, of course, in Oregon where they reported- although I have to confess I do not have a copy of this report on me, but I can certainly get a copy to the Committee - that a high proportion of patients suffering from, or with cases of disability, there was a greater likelihood for euthanasia being given in those cases.

Mrs Hannan: Only a likelihood?

M r Cusworth: A correlation.

Mrs Hannan: Could you expand on that?

M r Cusworth: In cases where a patient was either bedridden, or had cases such as spina bifida, there was a clear, high likelihood that that patient would be euthanased then, than otherwise. Now, this correlation was -

Mrs Hannan: That is not voluntary euthanasia, you are actually saying there is, out there, somewhere there are people who are killing, physicians who are killing off persons such as that?

M r Cusworth: Yes, and I believe that the Remmelink report supports this argument, the fact that 23 per cent, as I say - just under one in four patients - is killed, specifically, without consent, would indicate a genuine belief for this.

Mrs Hannan: And they are not terminally ill?

Mr Cusworth: I could not speculate upon that. That part is not recorded by the Remmelink study.

The Chairman: OK, before I turn to Mr Downie, could I just ask, are you saying that you have reason to believe, or you have proof, other than this eight-year-old report - and I am not doubting the findings of it and the anonymity of it - but there is almost a blind-eye policy towards a killing programme in Holland?

M r Cusworth: Other than the Remmelink reports, we have anecdotal evidence from physicians such as Dr Peter Hildering, who as I said, is president of the Dutch Physicians League, who has indicated his own belief that cases of involuntary and non-voluntary euthanasia not only have done and continue to be carried out but also that patients, with or without good reason, have felt so frightened as a result of the reports they have heard of this kind of involuntary and non-voluntary euthanasia being carried out, that they have even fled, to Germany primarily, in order to escape what they see as attempts to shorten their lives.

The Chairman: OK, and just finally, can you remind us of how many prosecutions there have been, given this widespread consideration?

M r Cusworth: The only prosecution that springs to



my mind at the moment is the case of Doctor Chabot No prosecution could be engaged as a result of the Remmelink reports, because as I say, not only is it an anonymous survey, but part of the conditions for doctors fulfilling this is that the Remmelink report, or any of the surveys carried out by Remmelink, could not be brought in any subsequent prosecution.

Mr Downie: Yes, I would like to ask you some questions about Oregon. You made reference to it in your evidence to us, and the reason I am asking you this is because, obviously, in America, the cost of medicare is expensive, palliative medicine is also very expensive in America (Mr Cnsworth: Yes.) and yet you said to us in the State of Oregon, if you wanted to be euthanased this would be provided free of charge. I wonder if you could just give us some more information on that?

M r Cnsworth: Well, if I can repeat a quote which I did give in my presentation, where the author, Emanuel, who is one of the leading physicians in Oregon, in an article entitled, ‘The promise of a good death', did comment that:

‘Time, resources and energy are always scarce. Focusing uponeuthanasia and physician-assisted suicide means diverting effort from

' the more mundane, but consequential activities necessary to improveend-of-life care for the 90% or more o f dying patients who will nevereven vaguely desire euthanasia*.

The point I believe that Professor Emanuel is making there is that, when one accepts euthanasia as a way of resolving difficult terminal illness, then this has increasingly led to more and more cases or increased reliance upon euthanasia, despite the fact that there are genuine alternatives available. Once again, Dr Peter Hildering also indicated this belief that even where genuine altemátives were available as reported by the Remmelink report in 17 percent of cases, euthanasia was still being used instead of a last resort, but merely as an option.

Mr Downie: Can I ask you, then, if you could perhaps enlighten us. Oregon is probably seen as one of the most religious states in America - obviously there is a big Mormon influence - it is a very strong, I would think, centre for moralistic feelings and views: why would you think that Oregon, out of all states in America, has decided to bring in this system?

Mr Cusworth: Oregon is not only... It is important to point out that Oregon was actually the first state in the world to fully legalise voluntary euthanasia, or physician assisted- suicide rather, despite the fact that, in the Netherlands, physician-assisted suicide had been de-criminalised, supported by certain guidelines, Oregon was the first state to actually legalise physician-assisted suicide. One of the reasons for this I believe, was due to the practice of a man made quite infamous in recent years by the name of Dr Jack Kevorkian who practised in various states, including Oregon, where he took around with him what he referred to as his Euthanasia machine* and generated a lot of publicity as a result Dr Kevorkian is now actually in prison in Texas, after filming a euthanasia without consent.

Mr Downie: Thank you.

M r Anderson: Firstly, Mr Chairman, just for the record, to state that I am a member of the Isle of Man LIFE and building on that, can I just ask Mr Cusworth: it is often thought that LIFE is solely a Christian organisation. Can you elaborate on that: is it solely a Christian-based organisation?

M r Cusworth: No, it is not LIFE is actually a non- denominational organisation, we accept members and have members from all faiths and none.

Mr Anderson: Thank you, and as has been referred to already as the ‘slippery slope’ sort of argument, and once you open the door - and there is no such thing as a halfopen door - we heard this morning witnesses saying that, basically, if legislation was put in with certain safeguards, it would be possible to have legalised voluntary euthanasia with safeguards that would stop that sort of ‘slippery slope’ scenario if you like. Have you any views on that?

Mr Cnsworth: Well, tragically, it would appear that the slippery slope argument is not just present with regard to voluntary euthanasia leading to cases of involuntary and non-voluntary euthanasia. We can see that, where one in four cases of euthanasia that is reported is either non-voluntary or involuntary, yet the majority of cases of euthanasia that are carried out, according to the Remmelink reports, are going unreported, which would indicate that this statistic could be even higher than this.

So, I would say that there is a very severe risk of a slippery slope taking place from, supposedly, voluntary euthanasia towards involuntary and non-voluntary forms of euthanasia as well.

M r Anderson: Just going on, then. In what ways might people who are weak and vulnerable, and suffering from a terminal illness... in which ways do you think they are vulnerable to pressure from requests, for a request to be killed?

Mr Cusworth: Whilst I would submit, that once again it would very much depend on the individual circumstances and individual patients themselves, that patients could certainly operate either on a conscious or a sub-conscious belief, or even, what they believe to be sub-conscious messages from family members, carers, or other members of society, that perhaps they should no longer be around.

As I say, Mr John Beloff, who was the chairman of the Voluntary Euthanasia Society in Scotland, has indicated not only does he believe there is a further slippery slope emanating from a perceived right to die to a full duty to die, but has actively supported this.

Barbara Smoker who is another former chair of the Voluntary Euthanasia Society (VES) has also indicated her belief that a slippery slope will lead from cases not only of terminal illness, but to non-terminal conditions and also has communicated her support for this.

M r Anderson: So, you would believe that people in certain circumstances would take that decision, not primarily for themselves (Mr Cusworth: Yes.) but for carers, family or people they see suffering as a result of their illness?

M r Cusworth: I would suggest that certain patients



would feel pressurised to take euthanasia as an option, despite the fact that maybe their personal views would not coincide with that of euthanasia, but would feel, rightly or wrongly, pressurised into accepting euthanasia as a perceived solution.

Mr Anderson: And what sort of pressure do you think that would put on the relationship between the doctor, the medic that is treating, if that legislation was in place?

M r Cnsworth: Once again, I think it is a very dangerous step that is taken when one gives somebody else the power over that patient’s life or death, particularly somebody who, of course, is in such a high position of trust as the doctor and particularly concerning end-of-life decisions.

Dr Peter Hildering, once again, if I can mention one of his other propositions, which was that he reported a case where a 59-year-old woman who opposed euthanasia for religious reasons, was suffering from a cancer of an organ, where she had continued to resist euthanasia, but felt pressurised by her family in order to accept euthanasia, and, in the end, did accept euthanasia, as a result of this.

Mrs Hannan: So where was that?

M r Cnsworth: This was in the Netherlands.

M r Anderson: When was this?

Mr Cusworth: Dr Hildering was speaking two years ago, and he was quoting a recent case, so I would suggest just over two years ago.

Mr Anderson: What do you think would prevent a steady extension of euthanasia in the Isle of Man, if legislation was brought in?

Mr Cusworth: Tragically, I have not seen a case in the world where I would state that euthanasia has been effectively policed, including the Northern Territories of Australia, where the seven cases of euthanasia which were carried out in the Northern Territories, five of these were recorded as taking place in cases of non-terminal illness, so that is one example of a case where voluntary euthanasia has been legalised solely for terminal illness, and has already strayed out of the recommendations, in a period of only six months.

We have seen, from the Remmelink reports, once again, how many cases of euthanasia go either unreported, and even the reported cases, a quarter of these are cases of either involuntary or non-voluntary forms of euthanasia, despite strict guidelines.

We have also seen from Oregon and the Netherlands where euthanasia is given despite the existence of genuine alternatives available, so what I would state is that I do not believe that there is any state in the world that has effectively policed or regulated voluntary euthanasia or physician- assisted suicide.

Mr Anderson: Thank you. Now, what limits do you think society should place on patient autonomy?

Mr Cusworth: What premise do I think, sir?

M r Anderson: What limits should society place on patient autonomy?

M r Cnsworth: I think society should underline at all times the value of the patient’s own life, the patient’s inherent dignity as a human being, and provide genuine alternatives in order to improve that patient’s life wherever possible, and 1 think the hospice movement, that Mrs Newton has discussed, is one such magnificent reaction to this problem.

M r Rimington: First of all, I would disagree with your last statement I do not see any contradiction to people holding different views, and approving of your last statement

Can I just say, at the beginning, that I find it difficult questioning you, because in your opening submission, I found that your submission was loaded with rhetoric, and very strong words all the way through, which, when you are trying to present evidence and then go through a question and answer session, it creates difficulties in appreciation of other people’s points of view, when you feel that you are being lectured at, and thrown ‘vulnerable’, ‘intense’, ‘dangerous’, ‘cynical’. I just wish to put that on.record.

Nonetheless, you place great emphasis on the 1991,1996 reports in the Netherlands and from what I can understand of what you said, that is predominantly, but not exclusively so, the statistical basis of many of your arguments and, as I understand - obviously correct me if I am wrong - that the situation in Holland was based on case law. If you said that it was de-criminalised, it was a practice that was allowed, subject to guidelines.

First, 1 think my colleagues have reported and questioned and have not really had a satisfactory report, that if the results of the Remmelink report -.say the 1996 report - were so shocking as you have outlined - there were all these instances of actions taking place, although, obviously, anonymous, within the nature of the report - the authorities would then have taken steps to ensure that prosecution did take place, Le. that those practices were addressed.

M r Cusworth: Mr Rimington, I can only report in terms of the results of the surveys, anonymous as they were, that the Netherlands, which, of course, is continuously pointed towards as an example of euthanasia in practice, that even in the ‘Dutch utopia’, as has been referred to by the Voluntary Euthanasia Society, in particular, as an example of so-called safe euthanasia in practice, that even in this particular state where a quarter of cases do go - sorry? (Mr Rimington: Have.) It would appear that, from 1991 and 1996, it is around 23 and 27 per cent, and I would speculate - although I would underline to the Committee that this is only my own speculation - that a similar statistic will be reported in the upcoming Remmelink report, due to be published later this year.

M r Rimington: And, okay, we accept that legislation was brought in, in the Netherlands, in 2001, which changed the legal basis of what was there before.

M r Cusworth: Legislation was brought in, in 2001, in order, pretty much, to reflect what was going on in accordance with the de-criminalisation that had taken place over 20 years before.

M r Rimington: So, okay, we will await the report in



June to sec what is there. It was interesting, also, you referred to a survey of doctors which you quickly gave reference to. I think that I also read the report of the same survey of doctors and -

M r Cusworth: Glad to hear it

Mr Rlmington: Well, we do try and keep on top of information, and that survey was organised by yourselves or...?

M r Cusworth: No, that is not true. The report was commissioned by a separate lobbying group by the name of ‘Right to Life’, b u t-

M r Rlmington: Yes, the lobbying group.

M r Cusworth: - what I would highlight, before Hon. Members of the Committee, that there is, of course, a very great difference between commissioning a report, yet the questions that were actually written were by a group called ‘Opinion research in business’ who have an impeccable record, as I am sure you will be aware, and carried out though doctors.net.uk, which has no interest either way, in either the legalisation or the opposition.

M r Rimington: And what was the response rate?

M r Cusworth: The response rate was around 986 doctors.

M r Rimington: Out of?

M r Cusworth: Just over 1,000. Once again, I have statistics and reports that I can provide you with.

M r Rimington: You asked 1,000 and you got 986 responses?

M r Cusworth: Since the response was made over a website, doctors.net.uk has just over 1,000 members. In other words, the survey was made available to just 1,000 doctors and out of those just over 1,000 doctors, 986 doctors did reply.

Mr Rimington: Thank you. Let us presume that that survey is all valid and meets all the good quality criteria for independence et cetera, then how do you explain the difference between the views of doctors in the United Kingdom, and the views of doctors, say, in the Netherlands, where, obviously, you outlined there is widespread activity and expressed it in the most horrific terms? How can one body of doctors in one, what I would call relatively modem, open, European democracy act in one way, and a similar modem European democracy, hopefully, the United Kingdom, operate in another way? How do you explain that discrepancy?

M r Cusworth: It is important to point out that, once again, it is not the British doctors who are operating in a way that is any different from the majority of medical opinion, which, of course, is probably one of the most binding principles within medical law of which euthanasia would presumably fall within, in addition to criminal law.

If we look back at the World Health Association, the vote that took place where it was only the Netherlands that did actually support the practice of euthanasia, even where euthanasia was legal.

Mr Rimington: You have not answered my question.

Mr Cusworth: Your question was, ‘How do I explain the difference between the two?’ Sadly, what I would state is that when euthanasia is increasingly seen as an alternative to palliative treatment, as opposed to a last resort, where this has taken place, incrementally, for the past 20 years, I would state that euthanasia is increasingly seen as merely one option among others, as opposed to a last resort.

Mr Rimington: Right, well, we have had evidence this morning regarding Oregon practice: quite interesting, and which actually contradicted your evidence, 100 per cent, in terms of hospice care, palliative care, so it is difficult to reconcile the two, but one of the statistics that was given, this morning, was that in Oregon, of the requests - which were, in fact, not that many - but of the requests for medically- assisted suicide, only one in 10 of those requests was actually undertaken. Now, how do you explain that in terms of the slippery slope?

M r Cusworth: The way that I would explain that is by quoting Professor Robert George, who, as I said, is President of the Association of Palliative Medicine,

Mr Rimington: Why are you quoting somebody to me all the time?

M r Cusworth: Because I believe that somebody has said the same principles that I would like to espouse in a far better way than I could.

Professor George did explain that in many cases where a perceived wish for euthanasia had been expressed, what the patient was genuinely after, was reassurance with regard to his or her condition, and that painful symptoms could be managed and that, in the vast majority of cases, this is the case, which is why only around one tenth, even in Oregon, of cases of euthanasia, or only one tenth of requests for euthanasia do actually result in the procedure.

Mr Rimington: Does not that negate the slippery slope argument, and the fact that there are people lining up to put people down, as you seem to imply by the evidence that you have given?

Mr Cusworth: I did not say that people were lining up to put people down. I apologise if that is the impression that you got.

Mr Rimington: It was very strong and forthright.

Mr Cusworth: But what I would state is that it seems very clear that it is around one quarter of cases of euthanasia are performed without the patient’s request, and that is not my opinion, that is fact.

M r Rimington: That is in the Netherlands, in the Remmelink report, from the early 1990s, sorry: we are talking about Oregon in the 21st century. We cannot take the



statistics from the early 1990s in one situation and transfer them to the Oregon in the 21st century.,

M r Cusworth: Right, well, euthanasia, of course, has been legalised in Oregon since 1996. Whether, in fact, a government-conducted survey has been carried out, as opposed to milieu survey carried out by practitioners of euthanasia themselves, which I believe was carried out a couple of years ago by Dr Linda Grisani, who, it is fair to say, would have a personal interest in the results of that survey, but a government-sponsored survey has not actually yet been carried out in Oregon, but if so, I am sure that the results of that would be most interesting.

M r Rimmgton: Okay, apart from the evidence given this morning, no doubt the evidence was from a party that had an interest in presenting a case, but it would seem that this is the nature of this discussion that is taking place across the board, not just with yourself, that -

M r Cusworth: Of course.

M r Rimington: - everybody who comes into this debate seems to come in with a pre-determined idea, and then finds their statistics and arguments to suit their idea - across the board - 1 am not criticising you, individually, for that

M r Cusworth: Thank you very much, but, of course, ideas and notions of what is safe or not safe to do should always be based on independent statistical analysis, and I hope that I have given that to you today.

M r Rimington: Again, in the evidence this morning about those people who were likely to pursue the option of assisted suicide - not necessarily get to that end point of using it, but to go down that route, at least start on that route - were people from, in fact, an educated, would more likely be from an educated and a well-resourced background, possibly have the ability to pay for palliative care in the more expensive US system et cetera, and were not necessarily the people you would lean towards identifying as vulnerable and weak.

M r Cnsworth: These are the cases that have been reported to yourself. Yes.

Mr Rimington: The evidence which we were given this morning, seems to negate what you are saying.

M r Cusworth: If I can repeat once again, the only study that I am aware that has been carried out in Oregon was carried out by Linda Grisani and other practitioners of voluntary euthanasia themselves: whether in fact one could detect a hidden interest within that, 1 do not know.

M r Rimington: Right Okay - L Ganzini.If we could for a moment just strip out the issue of

safeguards, or what could, or could not, happen if x or y was introduced, or not introduced, or whatever, and forget about the possibilities of the slippery slope, and the vulnerable pressure on the weak et cetera, and the disabled, and whatever people wanting to get rid of, or whatever -

M r Cusworth: Which is the majority.

M r Rimington: If you could just isolate that out, and

just say, ‘Yes we could provide a 100 per cent, absolutely secure legislation with all the controls’ - it is a hypothetical situation, because no law is ever that good, and I accept that, would you have a moral objection?

M r Cusworth: Would I, personally, have a moral objection? LIFE has never campaigned against the right of suicide. We have never campaigned against the Suicide Act. We have never spoken against an individual’s wish to kill themselves, if that is what they would decide.

But to repeat a point 1 made a little earlier, if an able- bodied person or a disabled person did indicate that wish, both myself and LIFE would come to the conclusion that something was tragically wrong in that patient’s life. We would want to investigate the symptoms behind this, and we would want to alleviate any potential unnecessary suffering but -

Mr Rimington: Yes, I accept that, but, obviously, that is your view on life, if you like.

Mr Cnsworth: Your question is whether we have any philosophical objections towards -

M r Rimington: If one could provide the statutory framework which was satisfactory, et cetera - and we would aigue about that all day, whether you can or cannot on that issue — but, then, if there is an individual who, in a certain situation, i.e. they are terminally ill, et cetera* wish to have medically-assisted suicide as one of their options, in the

. closing stages of their lives, would you deny that person that option?

Mr Cusworth: Sadly, I am afraid that I do not see that as a legitimate question, because any such hypothetical state is, as you point out, hypothetical. There is absolutely no way, from the evidence that we have seen and heard and more besides, that that particular state could ever be realised, either in Oregon, the Netherlands or sadly - and I do say, sadly- here on the Isle of Man.

Mr Rimington: I mean, you are concerned, obviously, in any body of medical procedures, around hospitals, across, whatever. People die every year who are not meant to die, because the system is imperfect (Mr Cusworth: Absolutely), and that is just a reality.

Mr Cnsworth: That is a reality, but just because this is a reality, does not necessarily mean that this is a reality which we should be accentuating and moving towards. Quite the opposite.

Mr Rlmington: I did not say accentuating. There is not a perfect state.

Mr Cusworth: What we need to be doing is moving away from it There is not a perfect state, as I pointed this out, but I believe that it is not only our duty as citizens, but particularly your duty as representatives of the people that you represent, to at least move towards that perfect state, in terms of providing genuine alternatives for patients and protecting their rights to live.

Mr Rimington: Everybody protects their rights to live. It is a very easy statement to make.



M r Cusworth: It is an easy statement to make, but it is a very difficult right to guarantee.

Mr Rimington: Yes. Okay. I will come back maybe later.

The Chairman: I am just conscious of the clock and keeping to time. Move to Mr Anderson?

Mr Anderson: Mr Chairman, the only comment that I would make: Mr Rimington just quoted, at the beginning of that, that he was unhappy with the number of quotes that the witness was making, but it was no more than the number of quotes the witness was making this morning.

Mr Rimlngton: No, I did not say that, if I may correct that, but I was unhappy with the rhetorical nature of some of the evidence.

The Chairman: That will all be recorded in Hansard, so thank you, Mr Rimington. Mrs Hannan.

Mrs Hannan: It was the statement that you have just made about people, in a way, staying alive. What happens... ? Do you accept that people die?

M r Cusworth: Do I accept that people die? Yes.

Mrs Hannan: Do you accept that doctors are there to keep people alive, no matter what?

Mr Cosworth: I accept that doctors are there to alleviate suffering. That is the role of the doctor.

Mrs Hannan: In certain instances, do you accept that people sometimes die?

Mr Cusworth: Of course. People do die sometimes, in tragic circumstances. It is the doctor’s role to provide treatment, if the patient wishes and consents to that treatment. However -

Mrs Hannan: What about the freedom of that individual to consent to that treatment?

Mr Cnsworth: How about the patient’s right to consent to medical treatment being given?

Mrs Hannan: In all instances of care, it does not matter where that care is, in the community or in hospice or in hospital, do all patients consent to all treatments?

Mr Cusworth: Yes, that is a binding principle of medical law.

Mrs Hannan: So, anybody going into hospice would sign a document to say that they knew that they were sventualiy going to die.

Mr Cusworth: No, but the fact that they are going to die, ■s not a principle governing to consent or refuse treatment

Mrs Hannan: But people can receive medication which loes, in actual fact, kill them.

Mr Cusworth: People can receive medication where pain will be relieved, but in very few cases that I am aware of, that I have been told by the medical doctors that I have spoken to, will the use of that kind of treatment shorten their life.

Mrs Hannan: What about treatment to prolong their life?

Mr Cusworth: Treatment to prolong life? What aboutit?

Mrs Hannan: Should people intervene to prolong life -

Mr Cusworth: If the patient is - ?

Mrs Hannan: If that is the natural course of events?

Mr Cusworth: If the patient has requested and consented to it, yes.

Mrs Hannan: Could I just ask you: you have stated that, for the Netherlands, the hospice movement was virtually non-existent.

Mr Cusworth: That was a statement made by Dame Cecily Saunders -

Mrs Hannan: And who was that then?

Mr Cnsworth: - who was the founder of the hospice movement, two years ago.

Mrs Hannan: Two years ago, right. Thank you..

The Chairman: Can you just refer to your notes there, Mr Cusworth, and remind me: you told us about a UK survey of doctors and the findings of that briefly.

Mr Cnsworth: You would like me to repeat the findings? Of course.

Mrs Hannan: You do have that with you?

M r Cusworth: Yes, I actually have a copy of the survey, which I will happily submit to the Committee,

The Chairman: We will do that at the conclusion.

Mr Cusworth: Okay. The doctors.neLuk surveys: 61 per cent of the doctors who responded stated that they do not want euthanasia legalised, with 13 per cent undecided.

An even greater majority of doctors - 76 per cent- stated that, even if euthanasia or assisted suicide were to be legalised, they would refuse to perform it.

Once again, it is probably important, I think that it is worthwhile pointing out the fact that no one single doctor specialising in palliative care, who responded to the survey, said that they would be prepared to practise euthanasia or assisted suicide.

Furthermore, a 56 per cent majority also stated their belief that it would be impossible to set out safe boundaries to euthanasia or assisted suicide, compared with 37 per cent who disagreed.

The Chairman: Can I just go back to your point about



unanimity around the world, I think you said, and then you redefined unanimity, from unanimity to overwhelming majority.

M r Cusworth: The unanimity that I referred to was from organisations representing the medical profession.

The Chairm an: So, when we break it down to individuals, and we break it down into a national picture in the UK, by my maths, 61 and 13 is 74 per cent 76 per cent voiced similar reservations about euthanasia, full stop. So it would be reasonable -

M r Cusworth: 76 per cent stated that, whether or not they were in favour of euthanasia, they would refuse to perform it

The Chairman: So it would probably be fair to say that that 74 per cent plus 2 would be the same group.

M r Cusworth: I would suggest that that could be very likely, but not necessarily.

The Chairman: No, but it would be likely, so that leaves pretty much one in four who would have a contrary view.

M r Cusworth: One in four doctors, yes.

The Chairman: So, that is not unanimity, is it?

Mr Cusworth: No, but it is not unanimity, but as I say, the unanimity that 1 was referring to was from national doctors specialising in the hospice movement

The Chairman: Yes, alright. Thank you.

M r Cusworth: And as I say, when I am talking about specialist and palliative care in the hospice movement, when we point out the fact that not a single doctor specialising in palliative care, which was the unanimity that I was referring to, did state that they would be prepared to practise either voluntary euthanasia or assisted suicide, then that would seem fairly unanimous to me.

The Chairman: Yes, thanks.Could we turn to Mrs Newton? Is there anything, in

conclusion, that you would like to add or state, before we come back to you, Mr Cusworth?

Mrs Newton: No, I have nothing else to say. I endorse all that Mr Cusworth has said.

The Chairman: Is there anything else you would like to add to what you have said, so far, or touch upon it further?

Mr Cusworth: Once again, if I can just refer back to my original premise that the proposals either to permit voluntary euthanasia or physician-assisted suicide, I would state, lead to a danger towards patients both refusing voluntary euthanasia and/or assisted suicide, as well as patients consenting to voluntary euthanasia and physician-assisted suicide, and the danger, I would suggest, inherent towards the medical profession, of whom it would appear that the overwhelming majority would oppose voluntary euthanasia,

and physician-assisted suicide, and to legalise this would be to thrust a process, force participation, upon the vast majority who have indicated their opposition to do so.

The Chairman: Thank you very much on behalf of the Committee.

I think that you have travelled from England to be with us, so thank you very much for taking that time and effort. I think that we will take a very brief comfort break, to get your papers sorted, and, perhaps, if you could lodge those with the Clerk to Hansard.

M r Cusworth: That would be good.

Mr Bryden was called at 3.39 p.m.

Procedural

The Chairman: Ladies and gentlemen, we will progress, moving on to the final person to give evidence today, who is Mr P Bryden from Sulby.

Mr Bryden, welcome. I think you were here when we did the introductions earlier, so if you are sure, who we all are?

M r Bryden: Yes, thank you.

The Chairman: And, again, sir if I could ask if we could speak slowly and clearly, for the sake of Hansard.

M r Bryden: First, my apologies for my voice, which is not at its best today; however, I hope you can hear me anyway.

The Chairman: Sorry, Mr Bryden, can I just interject Mr Rimington has to send his apologies that he will be leaving at about ten past four on a prior commitment, and you have also given us a paper that you are going to introduce from I think, so can we introduce that to Hansard, as part of your evidence? But, if you still want to read through it

M r Bryden: Please.

The Chairman: Okay, thank you.

EVIDENCE OF MR P G BRYDEN

M r Bryden: Well, firstly, I would like to thank the Committee for inviting me here, today, and, really, I think, I sit in the centre of the spectrum on this particular business of voluntary euthanasia, and connected matters. I really would be dealing with principles, I think, rather than a lot of detail.

I have lived on the Isle of Man for approaching 30 years. I have a family, actually, on the Island at the moment: four children and about half a dozen grandchildren, I have a daughter who is a practice nurse, and I have a grandchild who is in her final year as a medical student

I work with the Citizens* Advice Service in Ramsey

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P Cusworth and Mrs NewtonProcedural

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr P G Bryden


and have done for a number of years, and I take an interest in these matters, and being one of the grey surfers of this world, I and my colleagues have discussions on various subjects. Euthanasia was one of them that we have looked at and researched and debated. So, that, really, is the extent of my experience.

I worked years ago with the Manx Foundation for the Physically Disabled and, at the age of 70,1 am beginning to think about the end of things, in a very happy and cheerful sort of way, in 20 or 30 years’ time, whatever it may be, but I think a lot of people at my age may well begin to think about,1 well, what happens if 1 do get this or get that?’ I am very fortunate, I am a fit person, but I have, obviously, friends and colleagues who are not in that happy situation.

So, I would like to start, really, with a little bit of philosophy, which is in that little statement I gave you, and read that out to you.

I think compassion for those in need is, in my understanding, an important component of all the world’s main religions. In fact, 1 heard that said on Radio Four this morning by a Muslim on ‘Thought for the Day’. I am not a practising Christian myself, although I have been an active member of the Methodist Church, and had office in the Methodist Church, and I still have many people who I count as my friends, who are active in that church;

If you believe in the Christian God, who can intercede and respond to prayers, I would expect such a God’s love and compassion to override any considerations, when dealing with a person facing death. I would not expect selected, dogmatic sound bites lifted from the writers of the Old and New Testaments, such as the sanctity of life, to carry any great weight, in such a situation. Likewise, any secular human being or society which wishes to be considered civilised and caring, should, of its own volition, adopt a loving and compassionate approach to those having difficulty facing what they believe to be death and no future.

I believe, therefore, that the overriding consideration for any framework of guidance or legislation on euthanasia, and connected matters, should be compassion for those who need assistance and support to see them through what they believe to be the end of their lives. We should bear in mind that we are not attempting to provide something for everyone to follow, but only the freedom for those in need and those who would derive comfort and some escape from their own terrors and anguish, in facing the end of their lives, to use, a wholly optional course, tailored to their own specific needs, and, as we have heard this afternoon, the necessity of having all the necessary safeguards in place.

Before turning to the other submission, what is terminal illness? I think it is normally specified, probably, as some organic or physical disease. I do not know whether a human being who comes to the decision in his own mind that, ‘I want to leave this life, and I do not wish to remain here any longer’, whether one would consider that to be a terminal, mental illness, but it is certainly not a terminal illness in the medical sense, I do not think - but others better qualified than I can deal with that - but a person obviously is not in their normal state of mind, when they decide that they wish to end their lives. There is something seriously impacting on them and their mental condition. Very often it is a terminal, organic illness. So, mental condition, and whether coming to that conclusion is a terminal illness in itself, is something one might want to consider.

As for the current situation, well, we have our Dr Skott,

the UK has their Dr Shipman, despite the fact that there is no euthanasia, but we have involuntary euthanasia going on in that respect, hopefully, not very much.

We have involuntary euthanasia taking place in our care homes: we read about it every day. We had a very sad case on the Island only recently where, through neglect and lack of proper care, somebody has died whilst in care. So, maybe, these things are... because we do not have euthanasia law does not mean to say that euthanasia, in many ways, is not still taking place within our society.

We all jump into our vehicles every morning: literally tens of thousands of people are killed every year on the roads, and that is definitely involuntary euthanasia, when you get knocked down by a car, and not in the sense I know that we are talking about necessarily today, but society accepts the fact that lethal weapons, as they might be, on four wheels are on the road, and cause a huge amount of death and destruction to family lives and all those around them, and this is indiscriminate, totally indiscriminate. I wonder how much those people who are concerned with preserving life are directing their resources and attention to these sort of areas, as much as they are to the rather emotive subject of euthanasia.

I would like to, then, read from the document I actually submitted to you. Would you like me to do paragraph by paragraph and take questions on each paragraph? I mean, that would, perhaps, be easier, wouldn’t it?

The Chairman: I think, whichever is best for you.

M r Bryden: Right, shall we do it that way, then? I will take it paragraph by paragraph.

We already have, as you well know, on this Island, an excellent hospice, and I would see that, possibly, as the basis for any extension of voluntary euthanasia. The hospice organisation at the moment, I gather, does not agree with euthanasia in any form, voluntary, or obviously not involuntary, but anything which is going to be acceptable to the total population or the majority of the population, which is the framework which may come out of this Commission, legislation or guidelines, it would be better, I feel, if it was acceptable to our hospice care, because, really, this is the beginning of the line. It is the first step in recognising that people who are dying need special facilities and special care.

So, I followed the debate in the papers and elsewhere with interest

As our technical ability to prolong life grows, then so will the problem of termination of life grow with it Society will ultimately require democratically-accepted guidelines for those of us intimately connected with the living-dying process, and it goes without saying that each of us will be closely connected with this at least once in our lives, and many of us more than that.

Because this subject is closely related to developing science, and the desirability of prognostic certainties about death, I would expect any legislation to be incremental in this introduction. What I really am saying, there, is that because changes are taking place all the time in society, in the way society thinks, in the religious elements within society, the unreligious elements and, particularly, in the area of medical research, and our ability to prolong life and psychological research, then we are on moving sands. The situation is changing all the time, and legislation or guidelines would



have to take account of that fact, and the regular revision.So, I would ask the Committee to think, and approach the

problem in this way, to think that we are only at the beginning of the line here, and we have to accept that this problem will have to be addressed from time to time, indefinitely, while we have a civilised society. So, if the Committee feels that this is not the time to introduce a whole raft of legislation on the subject that is being requested by some supporters, I would ask you, then, to look at some of the less contentious things that could be done, and by suitable publicity clarify the current legal position of these matters in the Isle of Man.

I think many of us in the public at large are not clear about what the current rules and guidelines are. One of the areas 1 have in mind is a situation on advance statements, which may be advanced directives or living wills.

I gave you a copy of the Alzheimer’s Society, I have a copy here, and that is really part of my submission. If there is anything you want to refer to in that, then I would be happy to do so. I think it is an excellent paper, and I attach it to my reply submission for your consideration.

I assume that this document - I am virtually certain- has been prepared with the backing of expert UK legal advice. So, a clear statement of the general legal validity of these types of instructions made by Manx residents would, I think, be helpful to all approaching the end of their days, and who have anxieties about such matters. I think it would be helpful to people on the Island to know what the position is on living wills.

I mean, in the UK, I believe, it is really a matter of common law; there is no legislation. When I say ‘UK’, I am excluding Scotland and so it is flexible, in that it is based on case law. New situations can arise, different situations can arise, there can be legal cases brought, the law may move or it may not move. I do not know whether such common law would be taken as read on the Isle of Man, or whether this sort of thing that they talk about to the Alzheimer’s Society report would, in fact, carry the same weight here. I know that we do refer to judicial precedent from the UK when necessary, but I think those are the matters that need clarifying, and we need to know where we stand on advance directives.

I think it would also be helpful if we were clear about where the DHSS employed medical profession stands, in relation to the subject of treatment in terminal cases. The BMA has published guidance on the withholding of treatment, and I attach this to my submission for the information of the Committee, in case you did not already have it. These are only guidelines, of course, comment from our own DHSS medical staff confirming the Manx position and publication of the same, could be helpful and illuminating to the general public.

So, those, really for me are starting points. We are not talking about euthanasia, yet I am just talking about clarifying the current position on things that are going on in the rest of the British Isles, that may be going on here, I do not know, and what our position is in relation to them legally and as a society.

I do not know if anyone wants to question me on that part of the submission?

Mr Downie: Just to make comment that I think you should clearly understand that the hospice organisation, from the correspondence that we have had, are vehemently opposed to voluntary euthanasia, and their route is one of palliative care.

M r Bryden: I understand that I think what we have to know is: what do they understand voluntary , euthanasia to be, what do we and what do you as a Committee understand voluntary euthanasia to be and how far does it go?

M r Downie: We would not be in a position to direct hospice care.

M r Bryden: No, no, I accept that, we are in a democratic society and if hospice was to be the basis or the starting point for developing this sort of thinking, then I think that would be a desirable thing, that is all I am saying. I am not saying it is necessarily possible at this moment in time, but that depends on the sort of arguments that are put to die population in general. I am sure if the whole of the population, with the exception of the hospice care committee, agreed with the situation then they might have to think again, for example.

The Chairman: Just to clarify that Mr Bryden, we have had an indication from a representative from Hospice Care that they would be happy to come and give evidence, subject to some advance notice at a later date so, but thank you for that.

M r Rimington: What would you think to... actually, it was quite well explained at the beginning, that we are at the beginning of the process, and that I think a view would be that any legislation that was framed now would inevitably need to be modified as we went forward, because we are at an early stage of learning and history shows that we never get it right first time, doesn’t it?

Can I just illustrate two different approaches to legislation, that is, for your comment on, and I am not saying either is the right way.

One is to put the general principles in the primary legislation, and, possibly, the general principles of the safeguards and manner of operation and monitoring the procedures and so forth, but the detail you then put in secondary legislation, which does not have to go through such a great rigmarole for modification, i.e. can be changed relatively quickly, which is a positive, but also a danger from that side; and the other, obviously, the contrary side to that is to place a lot of the detail in the primary legislation, which is then locked up until that more complicated process of unlocking takes place.

M r Bryden: Yes, there may well be detail which is not of the substance and principle of the legislation, which could be put into secondaiy legislation, and I feel that any major changes, such as, for instance, moving from purely living wills to saying, ‘Yes, we might have a system of voluntary euthanasia for certain specified diseases, maybe one, two or three of them’, then anything like that would, obviously, need at least the whole of Tynwald to approve it. It would have to be, I think, enshrined in primary legislation, not secondary legislation.

I understand the purpose of secondary legislation is to deal with detail that is not affecting the principles behind the legislation, and there may well be scope for that within legislation on euthanasia, and connected matters, but I would be very much cautious over handing down to a committee or other body or Department of Government, such as the Department of Health, I suppose it would be DHSS, to have secondary legislation which interfered with the principles involved.

House of Keys Select Committee on Voluntary Euthanasia - Evidence of M r P G Bryden


Bit of a waffley answer that, but it is how I feel. I do understand the principle of primary and secondary legislation, Mr Downie, so that I am speaking from a limited knowledge of that, anyway.

Mr Rimington: It all has to come to Tynwald, at the end of the day. Obviously, secondary legislation can be progressed quickly, which, as I said, is an advantage in some situations, but if you are getting knee-jerk reactions, say, you can see it is a disadvantage, in that you do not have the same checks and balances.

M r Bryden: Quite, I mean, you can close a road in secondary legislation on the Isle of Man.

Mr Rimington: (Laughter) All the time, these days.

M r Bryden: Well, precisely, we do that often enough, but the principle is: do we accept that sometimes we are prepared to close our public roads, and we delegate that to secondary legislation, having decided the principle? I mean that, as I see it, is the difference between primary and secondary legislation, so we are on the same hymn sheet there.

Should I continue?

The Chairman: Please,

Mr Bryden: Okay. I, like many others, felt deep sympathy for Diane Pretty and her predicament I once had the privilege of being associated with a man dying from motor neurone disease. He, in fact, was a local Methodist minister He was mentally strong, highly intellectual, courageous and a deeply religious Christian. There can be no doubt that his total conviction that he was on passage to an infinitely better existence was a huge support to him, as death approached, in this most tortuous of terminal illnesses. Being a deeply religious believer in an afterlife must generally be of great mental assistance and comfort to those who are about to die. We see bad examples of its effect every day in Palestine and elsewhere in the world.'

So, it is all very well, if you have a deep faith and you have the confidence that you are moving to an afterlife. The suicide bomber has his paradise, and all the other attributes that allegedly go with it, and I suppose they have not only comfort but may even rejoice in the fact that death is coming to them.

But we are not all blessed with that situation, and I think most people in Britain, statistics would have us believe, do not attend a church and do not believe in the life everlasting, and are thereby deprived of this terminal comfort, through no fault of their own. If being a believer in eternal life is a gift from God, then it would seem the majority of people do not receive this gift So, is it not, therefore, incumbent on us to show human compassion for the Diane Prettys of this world, and alleviate their terminal agony in any reasonable way they would wish?

Here is a clearly diagnosable disease with very unpleasant terminal symptoms, where the sufferer remains mentally capable almost to the end. Why not have some legislation appropriate only to this particular disease? I can see all the difficulties concerning general legislation in relation to many other terminal illnesses, and this is what I mean by the need for incremental legislative steps where euthanasia is concerned. If there are a few terminal conditions, about

which most of us can agree, let us begin by legislating for these and these alone.

So, keep it simple and keep it controllable in that way, at the beginning of things, is what I am merely suggesting, and we need, also, I suppose to be dealing in, as far as possible, medical certainties, and the ability to make a prognosis about terrninal illnesses is improving all the time, along with the rest of medical science, and that is another factor which I think impinges on euthanasia, and what we do about it

People will say, ‘Ah, but this opens a door!* Well, I believe the door has already been opened with the first painkilling injection. I have talked to nurses, retired nurses of long experience, who have said that they have known the next injection for painkilling, morphine usually, will be lethal and that the person will die. I know personal, anecdotal cases where people have been called to the bedside by saying, ‘Next time we give him the injection, he may not be here, and you had better say what you want to say now’.

I think doctors and nurses are daily confronted with a huge and difficult dilemma of a dying patient, suffering severe and agonising pain, where they know that another morphine injection, of the strength required to ameliorate the pain, will be lethal. When they - rightly, to my mind - give that lethal injection, have they not crossed the Rubicon into the realms of compassionately-assisted death with just a little final dignity?

I think that it is very difficult for a doctor to come along and say, ‘Yes, I believe in voluntary euthanasia’. I would be a little concerned myself, if I was suffering, possibly with a terminal illness, and I knew that my doctor was a fan of voluntary euthanasia, and there was no legislation or no legislative framework to protect him at all, and I think doctors are in a very difficult position at the present time.

Whilst they are, I am sure, by and large, a compassionate and, obviously, caring sector of our community, they cannot stand up and say, ‘Yes, I support voluntary euthanasia’, because of the very situation they are in, and I think it is very difficult, I think that would possibly tie their hands. You have to think about when a doctor is giving that final injection, he does not have to think about legislation at the moment, he only has to think about what he considers to be good practice in relation to that patient. He does not have to think about what is the law, ‘What is going to happen to me in my profession?', but he does have the BMA guidelines on withholding treatment, which I suspect are the ones that are used really, in administering that final lethal injection.

That really sums up what I have to say. I say it as a simple member of the public. I am a man on the Ramsey bus - you know, not the Clapham omnibus, but the Ramsey bus - and it is a view from the man on the street, and I hope it was of some help to you.

The Chairman: Thank you, Mr Bryden. I am just conscious of the clock, and Mr Rimington’s commitments. Can I turn to him, first, if there are any issues?

M r Rimington: Well, not in any controversial way. You mentioned starting off with some clearly defined, known diseases - 1 think you referred to motor neurone as one. I am not a medical person and you are not a medical person, would there be... what other diseases would you, off the top of your head, think might come into that?

Mr Bryden: I suppose certain cases of dementia, maybe



certain types of lung cancer or other cancers which have... cancer of the oesophagus, 1 think, is a particularly unpleasant disease, and I am not qualified to answer that question, but I do know, and I am sure we all know, that people suffer immense mental agony and physical pain, when they are suffering from these diseases. In some ways, I suppose Alzheimer's disease is not quite like that *

There is a local lady, I believe, who used to be at Ballamona, who was convinced she was on a cruise and ended her days very happily, outwardly, anyway, in that particular way, and for other people it can be a total nightmare, I am sure. So, I am not qualified to answer that question.

But motor neurone I have had some personal experience of ,and I have seen a man decline over a period of years and retain all his mental faculties, and eventually be suffocated by his own disease, gradually spreading, while he was still mentally perfectly capable, and that suggests itself to me as one example where one might commence legislation.

I am sure there are others, but I am not qualified to give them.

M r Rimington: Secondly, you started off with quite a nice little philosophical statement Can I assume from that that you do not inherently see a conflict between controlled, or carefully controlled assisted suicide, in whatever defined circumstances, as being a contradiction with a belief in God?

M r Bryden: No, I certainly do not, no, because I believe that I do not... I am an agnostic I suppose, which as I am sure you know, means that I do not know, basically, and I believe that I wish I could believe in the Christian God. I have read a lot of the scriptures, I have been actively involved in the Church. Sadly for me, the more I have become involved, the less I believed, I suppose, really, which is an unfortunate state of affairs.

Also, probably, due to the ageing process, I suppose that might have something to do with it, having time to think more about these things, but whatever way, whether there be a God or be not a God, we are given the ability to make our own decisions on this world, and we should be able to do that, with or without his help, and when the world can see that and will do that it will become a more civilised body, I feel, so I see no conflict

If he is a compassionate God who wishes to relieve suffering and pain, and he is there, then I do not see why he should quarrel with it. I would be happy to debate the subject with him.

Mr Rimington: Thanks.

Mr Anderson: A few things. In your submission you said that society will ultimately require democratically accepted guidelines for those of us intimately connected with living- dying process. Do you not think society has already got acceptable guidelines?

Mr Bryden: You mean in the sense that -

Mr Anderson: Legislation.

Mr Bryden: - the legislation we have at the present time which protects us in terms of doctors’ certificates for example and certificates of death?

M r Anderson: Yes of death, yes.

M r Bryden: Yes, we have legislation in place which purports to do that, and, I am sure, in 99 per cent of cases does, but because you have legislation does not necessarily follow that it will be successful. I cite care homes, as an example.

M r Anderson: So, us bringing in legislation in this case then, you would take the same attitude, would you?

M r Bryden: The only thing I can say, ‘Well, we have no need of legislation to control care homes', which is patently wrong, we do have to have legislation for care homes, otherwise we would still have workhouses and similar institutions. So, legislation is necessary, but it is an imperfect world, and we cannot expect to get perfect results, that is what I am really saying.

M r Anderson: So, if we have legislation, we had better make sure it is enforced, really?

M r Bryden: No question about that, yes I would not disagree with that

M r Anderson: And that is what has probably gone wrong in a care home situation. The legislation was not being enforced?

Mr Bryden: I dare say, yes.

M r Anderson: Okay, are you mindful of the views of disabled groups in relation to this legislation? You said you had worked -

M r Bryden: Well, there is no legislation as yet I think that is the whole point

Mr Anderson: There is no legalisation at the moment, so there is legislation that you cannot do it

Mr Bryden: So, I believe that, with any individual, handicapped, disabled or whatever, you have to say, ‘This is what we are proposing. We are not proposing a whole raft of legislation for a whole raft of diseases, or the elimination of people with certain disabilities or difficulties’.

First of all it has to be voluntary, with the accentuation on the word ‘voluntary’, and secondly, we have to agree it step by step, so I am only suggesting one disease at the moment which I happen to know a little about and I would have to go and consult the medical profession, if I were to add to that list

Mr Anderson: Obviously, you have had experience of somebody dying of motor neurone disease. Did that person express the wish that voluntary euthanasia should be legalised?

Mr Bryden: No, he was one of the fortunate people who had a consummate faith. He was a Christian to the core, so far as I could tell, and a believer in God to the core. That is a slightly different thing maybe, but, however, he certainly believed in the life hereafter, and that really carried him through, I think, his final days.



Mr Anderson: You touched on one or two other illnesses that you thought might be applicable in an incremental way, in the future, and one of those was dementia. Would you not agree that any legislation should only be given as an opportunity to people who were mentally competent?

• M r Bryden: Yes, I believe in the case of dementia, then if I ... in the very early stages, these days, you can diagnose dementia, when you are still perfectly rational, that is a clear case where an advanced directive is very important and helpful, I believe, to those who are going to be caring for me, when I have the full-blown disease. So, it may not be a situation where voluntary euthanasia is appropriate, but it is,I feel, certainly a case where an advanced directive which is taken notice of is important

M r Anderson: Do' you think that people's medical conditions can change, and that occasionally, doctors do get diagnosis wrong?

Mr Bryden: Yes.

M r Anderson: Therefore, somebody might make a decision on a living will, for example, as a result of a diagnosis and then, further down the road that diagnosis is proved wrong, what are your thoughts on that?

M r Bryden: Well, there is a safeguard in place for that, because I think a living will, to be accepted, has to be regularly updated. The current BMA guidelines suggest every five years: that seems to be, in today’s climate of medical advance, quite a long period of time. I have heard a period of two years suggested as being sensible, and I think in my own case, if I was going to make a living will - I confess I have not - 1 would probably be thinking of updating it at least every two years. That might accelerate, depending on what my condition was.

M r Anderson: The proponents of voluntary euthanasia are suggesting to Members of Tynwald that any legislation that should come forward should be very tightly controlled, and we would know, when we put the legislation in place, that it was watertight and that it could not be expanded, if you like, in any way Do you not think that this statement you are making, about it being incremental, would put people off even introducing it in any such way?

Mr Bryden: Well, if it does, so be it I am concerned about the risk here, of the very risk that you state, where there are uncertainties in prognosis in a disease then, clearly, that for me, might not be a suitable subject for voluntary euthanasia.

All the other things yes, but it is an imperfect world, we need to be dealing in certainties, and that is asking, probably, the impossible where a prognosis is concerned, but in some cases more than others, and I only select one possible example. So, it is an imperfect world and any legislation is liable to require correction.

Mr Anderson: Are you aware of the introduction of v the Abortion Act in the UK and how that was termed at the beginning 'only for extreme circumstances' and yet now it is quite extensively used in very many different stages?

Mr Bryden: Yes, I feel that is a different subject I am

very much, in that particular subject - which is a different one- in favour of the rights of the mother. I understand the point you are making, which is that the legislation has been abused. Well, it is for our legislators, it is for the UK Government to decide, in relation to the electorate, democratically, whether that legislation needs modifying or not, and if it does, they should do it

Mr Anderson: Could I just touch maybe on the vulnerable and pressures to vulnerable people? If legislation was in place, do you not think that would put pressure on vulnerable people who had relatives, that they were distressed because the relatives were distressed seeing them in the state they were, and as there was legislation possibly in place, they in some way may feel obliged, in certain circumstances to go down this route?

M r Bryden: People do this already. There is many a person who has, sadly, gone out with a bottle of pills or a bottle of whisky or both or whatever and committed suicide because he feels he or she has become a burden to the family around them.

These are very serious, personal thoughts, and I think that, whether I would be sitting down, reading the Act in relation to euthanasia, and thinking about that at the time, I do not think I would - 1 would be thinking about the actual details of iny life, and what I am doing to the people that I am depending on. At least, I hope, that is what I would be doing.

So, I understand the point you are making, but I personally do not think it is important in that area, because I think people, make those decisions already, anyway.

Mr Anderson: Do you not think, though, that there is an argument there for developing palliative care to a wider cross-section of the community, to make sure people know it is available, and how it can help them mentally, as well as physically, that more resources should be channelled' into that area, rather than a legislative area for voluntary euthanasia?

Mr Bryden: Well, I think that in a way you are in agreement with me, because I am saying that, while development of the hospice care facility, further down the line as it were, would be a commendable way of proceeding with this, if it was possible, and would be a way which I think would be acceptable to the Manx electorate, generally, because we have a very good hospice care function. That is the area to develop if we can, and I hope the people in charge of hospice care are not people who are fixed thinkers, that they will see changing situations and change with them- such as medical science and society -

Mr Anderson: I think Hospice Care have a different view on that, in that they see, in the alleviating of pain for the patient, they would not - 1 am just putting my opinion forward - think this is a process you go down, iand you get so far and then you make a decision. That goes against the principles of what I understand to be hospice. Can I -

Mr Bryden: Are you talking about - may I ask you one more question to clarify that - mental pain or physical pain or both?

Mr Anderson: Primarily, it is for the physical condition



of the person that hospice, as I understand, deals with. When we talk about mental anguish, it gets rather confusing, and I think it is another area and it is very difficult.

I asked somebody this morning and, maybe, I could ask you, how do you draw the line between somebody who is depressed and going through a phase where they might be giving consent to take a voluntary euthanasia step that might only be a period of their life, if you like, a short period of their life, and two weeks down the road their whole complexion on life changes?

M r Bryden: 1 think you are saying exactly what I said: that is a difficult matter on which to give an accurate prognosis, for a psychiatrist or a GP or any other doctor, because that is a situation known to exist So, if we cannot give an accurate and satisfactory prognosis of how that is going to develop, then there is a risk factor there, obviously, and it is not a suitable subject for voluntary euthanasia, in my opinion.

Mr Anderson: So, would you say it is very difficult to draw a line between where you say it is acceptable, somebody to have voluntary euthanasia, and somebody who cannot have it?

M r Bryden: Extremely difficult, I agree. But not a reason for not having legislation where we have certainties, some - reasonable certainties.

M r Downie: Just picking up on some of the points that you made then, Mr Bryden, I get the feeling that you would accept that people have the right to die with some dignity?

Mr Bryden: Yes.

Mr Downie: And maybe that caused the spectrum. I mean, we mentioned people with terminal illness, but you could also envisage a lot of people - 1 will not say a lot of people - but there will be a number of people in their early to mid-80s, crippled with arthritis, immobile, starting to have incontinence problems, obviously their long-term prognosis is not very good at all. What do you do with them? They could be three or four years in a home deteriorating, I can see that side of it. Interesting.

I just want to ask you whether you think that the provisions for bringing about euthanasia should actually be left with Government, with the Health Services, or it should be somebody outwith the Health Services, similar to hospice that should be providing this type of treatment or service?

Mr Bryden: How do you mean, the legislation or the actual - ?

M r Downie: No, the legislation will be completely separate.

M r Bryden: Oh, I see, yes I understand what you are saying.

Mr Downie: But if this is to proceed there is a conflict with the principles enshrined with the delivery of the general medical facilities. If you were in earlier on, we heard from the Island’s principal nursing officer, and in the UK, currently there is strong objection from the main nursing unions and

the BMA have concerns about these issues, so it is thought that a way of, perhaps, moving the argument forward, as it were, to find another route, another type of hospice that could be licensed and regulated, but, of course, accessed by doctors.

M r Bryden: It seems to me that, when you have the dying and those who are trying to live, side by side in a facility, that is probably not a good mix. The hospice has been a great success, in that it is clear that when you go to hospice you know what the situation is. It is very unlikely that you are going to come out, and that I think is a good thing, because you have to face up to certain facts, and you have care there which is related to that, and the same principles have to apply, I would have thought, in relation to euthanasia, which is why I see the two things as very closely connected

So, the answer, to you, is really whether it is under Government or under private care. If it is privately owned, as the hospice here is, I am sure it is regulated in certain ways and hospices concemed with voluntary euthanasia would also have to be regulated very carefully, of course.

Mr Downie: Just one other point: you mention that you felt, if there were no provisions made, people would be more inclined to go off and do their own thing, as it were, and commit suicide, go and take tablets and things. I think it is worth mentioning that the statistics show, really, that does not tend to happen. The number of suicides that we have, both in the UK and the Isle of Man, generally indicate they are much younger people, who, generally, do not have a physical illness, but pressure of life and all sorts of other things and financial problems, but by and large the number of people at the top end or the older end who have been diagnosed with illnesses or the long term health is not very good, they do tend to stay the course, as it were.

M r Bryden: Sure, well, I mean, that is a question of fact isn’t it? I think we are almost certainly only going to be legislating for a very small body of people, if we do legislate, anyway. So, that I think is the answer to that particular point

If there was a big demand for voluntary euthanasia within the population as a whole, then a lot of people, as you rightly say, would be going out committing suicide. I think that is the point you are making isn’t it? Because it is relatively easy to do that these days. So, I think the number of people who will be wanting voluntary euthanasia, because of the good palliative care, the good medical care that is available, would be relatively few. But, nevertheless, they have their right to die with dignity.

Mr Downie: I think the difficulty is putting the legislation together that covers all these angles and satisfying the BMA and the medical profession and everywhere else, in a small jurisdiction like the Isle of Man.

Mr Bryden: Sure, so I say let us start with living wills, and let us start with clarifying the position for people, so that people know what doctors can and cannot do under the BMA guidelines, and we have a little bit of publicity, perhaps, about this. Legislation could perhaps follow that I do not know.

Mr Downie: Thank you, Mr Bryden.



The Chairman: Mrs Hannan.

Mrs Hannan: No, I have no questions for you. I would just like to thank you for your evidence.

M r Bryden: Thank you.

The Chairman: Could I just conclude - oh, David?

M r Anderson: Just following on from that then, do you not agree that hospice allows people to die with dignity, as well?

M r Bryden: I would, yes. People go into hospice with a huge variety of end-of-life problems and end-of-life causes, and I am sure that many of them die with dignity, because the palliative care is appropriate to their condition.

We are talking about the few here, possibly, who are in mental anguish and mental suffering, who require a different approach.

Mr Anderson: Sorry, as I understand it, people who are in mental anguish, would, from what I understand, from what is proposed, they would not fall within these criteria - they would have to be mentally competent.

Mr Bryden: That does not mean to say they are not, because they wish to die and end their lives. Because their quality of life is such that they no longer wish to continue it, means that you have to be in a state of mental anguish in my book, to be in that state of mind, but it does not mean to say that you cannot think rationally and decide that ‘Well, this is the end, I do not want any more, I have had enough’, and that is really the category of person that I am talking about- not somebody who is mentally deranged, for example.

M r Anderson: Okay, can I maybe just touch on something else then. What do you think the impact would be, with legislation coming into place in the Isle of Man, when other jurisdictions round about have not got the same legislation and we are trying to attract health professionals from outside the Island, who have trained elsewhere?

M r Bryden: I see a difficulty there, I agree. I do not know. I understand the point you are making. I am not qualified to say how big a difficulty that is. I can see that if one had to choose between having care professionals on the Island and having voluntary euthanasia, if it is a clear cut thing like that, there is only one obvious answer. But you are asking for an opinion on something which would be very difficult to judge, I feel.

We should not be providing the service to people who are resident outside the Isle of Man. We are pretty good at making residential wills over here for ourselves, and I see no reason why we cannot do it for this, as well as anything else.

The Chairman: Okay, well, for me to just to say thank you very much for not only offering your submission, but giving up your time to come in, Mr Bryden. It is much appreciated. Is there any final observation or concluding comment you want to make to us?

M r Bryden: No. All I hope - well, perhaps, there is yes: I cannot say no, and then say something can I? (Laughter) It is a bit -

The Chairman: We do that all the time! (Laughter)

Mr Bryden: I do hope that, at the end, the Commission will actually be successful in producing something, in terms of enlightening those members of the population who are interested in this subject, which is generally the elderly, in what their options are, and if nothing else comes out of it I believe that will be beneficial. Maybe we already have these options, but we do not know it, but that, in itself, needs clarifying, I think.

That is all. Thank you.

The Chairman: Thank you very much again.Thank you very much ladies and gentlemen. That

concludes it for today.


House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr M Kermode




(HANSARD)


BI NG E R - L H E H MYC HI ONE C O YRT - G Y-B AAS E MYGHI N AGH LESH COARDAI LYS

Douglas, Friday, 21st May 2004

Published by the Office of the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle of Man. © Court of Tynwald, 2004 Printed by The Copy Shop Limited, 48 Bucks Road, Douglas, Isle of Man

Price Band E

46KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004


Mr D M Anderson MHK Hon. A F Downie MHK (from 10.15 a.m.)


Clerks:Mr M Comwell-Kelly, Secretary of the House of Keys (Morning only)

Mrs M Cullen, Deputy Clerk of Tynwald (Afternoon only)

Business transacted

PageProcedural.............................................................................................................................................................................. 47

Evidence of Prof. J Harris, Institute of Medicine Law and Bioethics, Manchester University................................... 47

Procedural.............................................................................................................................................................................. 55

Evidence of the Ven. Brian Partington OBE, Archdeacon, on behalf of the Churches............................. ...................55

The Committee adjourned at 12.13 pm . and resumed at 12.20 pm .

Procedural............................................................................... ;.............................................................................................60

Evidence of Ms D Annetts, Voluntary Euthanasia Society - Evidence commenced..................................................... 60

The Committee adjourned at 125 p.m. and resumed its sitting at 2.30 p.m.

Evidence of Ms D Annetts, Voluntary Euthanasia Society - Evidence concluded........................................................ 70

Procedural............................................................................................................................................. ................................71

Evidence of Dr B Harris, Isle of Man Medical Society..................................................................................................... 71

Procedural..............................................................................................................................................................................81

Evidence of M r M Kermode, Mec Vannin.........................................................................................................................81


Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 47KCE


The Committee sat in public at 10.00 ajn. in the Millennium Conference Room,



Procedural

The Chairman (Mr Gill): Moghrey mie, ladies and gentlemen. Thank you for your interest and attendance.

Before we begin, I think, Prof. Harris, you probably will not know us, but you can see from our titles. We are a Select Committee dealing with matters around voluntary euthanasia and that issue. My colleague on this side: Mr Rimington. Mr Downie, my colleague, unfortunately has been called away on Government business but will be joining us very shortly, we hope. I am Quintin Gill. This is Mr Anderson and Mrs Hannan. We are all Members of the House of Keys, and this is Mr Malachy Comwell-Kelly, who is the Secretary to the House and is the Clerk of this Committee.

If I could, Prof. Harris, remind you that we are being recorded for Hansard purposes, so perhaps, if we do not speak clearly, you can tell us, but if we could try and just be mindful that we are being recorded. (Interjection by Prof Harris) Thank you.

EVIDENCE OF PROF. J HARRIS

The Chairman: We are very conscious of the tight schedule you are on, and very much appreciative of the fact that you have made the effort to come and give evidence today, so perhaps without any further ado we will hand over to yourself.

Perhaps if you want to give an introduction, and then we will go into a bit of a ‘question and answer’.

Prof. Harris: I have not prepared an introduction, but I am very happy to say something very brief. It seems to me that... Let me offer you a proposition, which is that there is only one thing wrong with dying, and that is doing it when you do not want to, or doing it in a manner that you do not like. All the other problems are not really problems about dying. Problems like pain, for example: pain is clearly something that nobody likes, but that is a problem about pain, not about dying. If that is broadly right, then it follows that dying when you do want to, or in the manner that you want to, is okay, and I think most people, actually, would intuitively feel that that is right

I think all of the remaining issues, really, are issues about practical matters, are issues about whether slippery slopes are a danger and, if so, what sort of danger they are, whether :here are dangers that people might be coerced, might not ^e really dying when they would wish to do so, or in the

manner that they would wish, and so on. And those dangers are real and I do not underestimate them, but against those dangers have to be set another group of dangers, and those are the dangers of people dying unpleasant deaths that they would not wish to die.

We are familiar with the case of Diane Pretty, for example, who campaigned very strongly to avoid a death by suffocation, which she found particularly terrible as a prospect, and who failed. You will probably be familiar with the case of Geoffrey Wamock, Baroness Wamock’s husband, who died in December, and I do not know whether you have seen it, but Mary Wamock wrote a very moving piece in The Times, saying that she had made an error in supporting legislation against euthanasia in the past and that with the experience of her husband facing also death by choking, and being very fearful of that particular death, she recognised that she had, as it were, got it wrong, in objecting to voluntary euthanasia and had changed her mind, and I think... So, against whatever dangers there are of slippery slopes and people being insincere in their wishes to die have to be set the dangers of condemning people to very unpleasant deaths that they would not wish to experience.

Perhaps the last thing... I am very happy to answer questions, and I think you may have received a paper on end-of-life issues that I have written. Those who have... I do not believe that there is anyone who has a sincere, principled objection to euthanasia, and I will offer you one case which I think illustrates this point.

It is a case that was reported by a very famous Oxford professor of jurisprudence, Herbert Hart, in one of his books, and it apparendy is a real case that occurred in the United States. This was a case where there had been a road accident and a lorry driver was trapped in the cab of his lorry, which was burning. There was an American policeman on the scene, who, like all American policemen, was armed, and it was quite clear that the driver could not be extracted from the cab before he would be burnt alive. The driver pleaded with the policeman to shoot him in the head, give him a swift death rather than let him be burnt alive. Those who have a principled objection to voluntary euthanasia would have to think that it is morally better, morally acceptable, to permit the driver in those circumstances to be burnt alive rather than being offered the swift death that he requested.

I know of nobody who, when this case is put to them, would hold out for a preference for the driver being burnt alive. There may be people in this room who would take a different view, but if I am right about that, I think that that as it were, concedes the principle that it is both ethically acceptable and, indeed, humane, decent and reasonable, to end people’s lives at their request, at least in some circumstances.

The only remaining question then is: in what circumstances and with what safeguards? Thank you.

The Chairman: I turn to my colleague, Mrs Hannan.

M rs Hannan: Yes, could I ask about... The paper that you have written is about consent and the end-of-life . decisions. Could I ask about consent? It is a difficult one. It tends to be that if someone consents to ending their life, that is wrong, but if somebody has not consented, it is okay to treat someone until they die, and I wondered what the situation is with consent. You cover some of it in your paper, but it is the actual... It seems acceptable if somebody does

ProceduralHouse of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris

48 KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence

not consent, to them being helped out of life by pain relief and something that might kill them, but not acceptable if they actually consent to it and it happens before.

Prof. Harris: You are saying that this is a common belief that there is this distinction? The role of consent, as you will know, probably, better than I, has a peculiar role in common-law tradition jurisdictions. Consent is there to prevent medical touchings counting as assaults and to support the autonomy of the individual, so that where people consent to what happens to them, that rebuts any suggestion or presumption that they might have been assaulted So, in the model that I offered you - this rather simplistic suggestion that I put at the start that there is only one thing wrong with dying, and that is doing it when you do not want to - if you know that people want to and you know that they consent, it seems to me, assuming the consent is genuine and informed and so forth, that that deals with most of the ethical worries that we ought to have.

Then the question is: what of those cases, for example like Tony Bland, who is in a permanent vegetative state, in the United Kingdom? Eventually, the House of Lords decided that it was ethical, legal and appropriate that his life should be ended Who could not consent?

Where people cannot consent, it seems to me that there are two successive stages that must be covered. The first is: where you cannot get the consent of the individual, you have to move to what is generally called the ‘best interest’ test You have to try to decide what it would be in their best interest to have happen to them, and for people whose life could continue in a reasonable way, it will usually be in their best interest for that life to continue.

Where a biographical life has, effectively, ended, as was - the case in the Tony Bland decision, where, as I think the various Members of the House of Lords said - 1 think I can quote one of them almost verbatim from memory - Tony Bland had ceased to have any interest in living and whether or not he lived was a matter of total indifference to him, in those circumstances it seems to me that there are no best interests to consult that there is no life there of any meaningful sort. The individual whose life it is cannot be either wronged or harmed by the ending of that life, and, therefore, it is open, it seems to me, to society and to the courts to say, ‘What other considerations, then, are important?’, and if nothing turns on it and people are very concerned that the life should be sustained, then by all means sustain it, but, usually, something important does turn on it. In the Bland case, his parents wanted to be allowed to grieve. They had petitioned the courts. While Tony was alive, they went every day to his bedside and sat with him, and they had done that for a number of years. They wanted to be allowed to grieve. They wanted to have closure. They wanted him to rest in peace.

There are also, of course, very often important other sorts of considerations to keep somebody like Tony Bland not in intensive care, but on a high... I have forgotten the name given to these beds, but a bed that requires a great deal of attention is very expensive for society, and the money deployed to do that will be diverted from other important uses for healthcare resources. As you will know, in the Bland case, the House of Lords decided that they would not address the financial questions. They would assume that there was no effective financial interest, but I think, in a responsible society those interests must arise, because it is the duty of law-makers not only to consider the possible interests of the

people immediately before them, somebody in a permanent vegetative state and their relatives, but also the other people who may be affected by the decision to keep that individual alive, including those who might occupy that bed and have, in turn, their life saved by the resources that are currently being deployed - 1 was going to say ‘for the benefit’, but that, of course, is dubious - for the attention of an individual who cannot further be benefited by health interventions one way or another.

I am not sure if that quite answers your question, Mrs Hannan, but I did my best.

Mrs Hannan: Thank you.

(Mr Downie takes his seat)

The Chairman: David.

M r Anderson: Yes, thank you.Would you agree that it is very difficult to take an

academic view in this area, without actually being influenced by your own personal views and experiences? And regardless of your academic interpretation of the situation, do you think that you cannot separate that from the other influences that have impacted on your thoughts?

Prof, Harris: I think it is true that all of us bring to bear, on any issue that we take seriously, both our powers of assessing evidence and assessing the quality of the arguments on both sides of the case, and also, of course, we take into account our personal experiences and, indeed, the experiences, as we understand them, of those that we know, but it seems to me that it is our responsibility to sift all of those, and try to decide, on the best judgement that we can make, about the weight of evidence and argument and personal experience, and what the right course of action should be.

I think it is, certainly, our responsibility not simply to be driven by our feelings, however strong they are. We have to assess the appropriateness of those feelings. I do not suppose I am the only person in this room who is conscious that sometimes they have very inappropriate feelings about situations. I have many prejudices, and many of those prejudices I am ashamed of, but they are sometimes very strong. It is the responsibility, I think, of all human beings to try to decide which of the feelings that drive them are prejudices, which are irrational, which are inappropriate, and to make judgements in the light of those.

So, in short, I am not sure that I accept the implicit distinction in your question between an academic view of a subject and, so to speak, an authentically felt view. I think it is each individual’s responsibility to sift all of those elements in their decision-making, and try to come to the right conclusion.

Mr Anderson: So, would you therefore be happy with your own situation, that you can clearly put aside those prejudices, if you like, that you have in your own mind, compared with the academic area that we have asked you to explain today, in that, with any experiences or thoughts or waverings you have one way or the other, you can quite categorically state that you are independent in this area?

Prof. Harris: I am independent, just in the sense that

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J Harris


I have no financial or other pressures on me, dictating an answer to this question in one direction or another. I am a member of no organisation that supports euthanasia or, indeed, opposes it

I have tried, as a philosopher and as a citizen, to think as clearly as I can about the issue of euthanasia, and of course, one of the things that runs through my mind when 1 think about a question like that is what I would want for myself. Would I want the freedom to choose death in certain circumstances, and why would I want that?

I have answered that question in the affirmative: I would want that freedom. I would regard it, as another philosopher has said, as a cruel tyranny exercised over me for somebody else to deny me a death that I sought when I had come to a mature and considered judgement that that was the course that I wanted my life to take, and the manner in which I wished my life to end.

Mr Anderson: Just going on from that, then, what limits do you think society should place on personal autonomy?

Prof. H arris: There is a book-length answer, and, fortunately for you, I have a plane to catch, but the short answer is also the traditional one, one given by John Stuart Mill.

It needs to be hedged about, with many qualifications and caveats, but broadly, my autonomy ends where your autonomy begins. So, if the exercise of my autonomy limits your autonomy in some way, that immediately creates a question of balance.

It does not always entirely end where your autonomy begins, and we have to analyse what your autonomy means. Is it just where my exercise of a particular course of action is something that you do not wish to see happen? Does that violate your autonomy - that is a complicated question- or is it only when I actually circumscribe your physical movements in some way?

But within those sorts of difficulties, which can be teased out, I would defend autonomy so long as, broadly speaking, it does not violate the autonomy of others, and in the case of decisions about one’s own death I think one has to ask, ‘Who is the person primarily concerned?’ - clearly the subject themselves - ‘Are others affected by someone’s death?’ Of course, they are. Every man’s death diminishes me in some sense, but I think the crucial question is whether the greater evil is to deny the individual subject the autonomous control of their own destiny, and allow others to decide when they die and the manner of their death or not, and I think that is the greater violation.

The greater violation would be to deny the individual control of that, and accord that control to others, however caring those others are of the individual concerned. Of course, if I were to end my life, I hope there are at least one or two other people in the universe that might be distressed by this, but the question is whether their feelings about how I should die are to be given primacy over my feelings about how I should die.

M r Anderson; If there is a choice, do you think that the law should aim to protect the large number of vulnerable people, or remove the protection, for the sake of the few who fear suffering? And legislation would not help them to relieve that suffering.

Prof. Harris: Of course, it is our responsibility to protect the vulnerable, but it is also our responsibility to champion the rights and the liberties of the vulnerable. Being vulnerable does not mean that you have no rights, no liberty, no autonomy to exercise, so we would need to talk in more detail about in what senses particular classes of individuals are vulnerable, in what their vulnerability consists, and how best that vulnerability may be protected.

But it is not clear to me that we protect the vulnerable by denying them, even in their vulnerability, the opportunity to exercise autonomy over the way their life goes - quite the reverse, I would suggest And, as I indicated earlier, it is also not clear to me that the class of vulnerable people excludes those vulnerable people who are institutionalised, who are unable to take their own lives, would require assistance in order to do so. They seem to be a very large class of vulnerable people, and to a great extent their vulnerability consists in their helplessness in the face of others denying them an end to the life that they would wish to end.

Mr Anderson: Just going on, we here, this Committee, are looking into possible implications of voluntary euthanasia legislation. You seem to be broadening it out into euthanasia per se, if you like. What I am trying to say is: we are looking into the implications of purely voluntary euthanasia, but you seem to be favouring euthanasia, full stop, or making a case for euthanasia.

Prof. Harris: These are discrete questions, and it is important to keep them discrete. I broadened the issue in response to Mrs Hannan’s question.

I would certainly be in favour, for the reason I gave, right at the beginning, of voluntary euthanasia. It seems to me that this is properly the individual’s own decision. We know, even in societies like my own, if I can make that distinction between the Isle of Man and the UK, the rest of the UK... As you know, in the United Kingdom, euthanasia of any description is apparently not permitted, and yet the courts were able to order the death of Tony Bland. Effectively, the courts were able to order the separation of the Manchester conjoined twins, knowing that that would involve the deliberate killing of one of the twins in order to save the life of the other.

So, there are issues which all societies face, whatever stance they take on so-called ‘voluntary’ euthanasia, which involve end-of-life decisions and, indeed, which involve decisions taken by third parties, usually the courts or at least of the instance of the courts, where people who cannot consent to death have their lives ended in various sorts of circumstances.

I think it is proper for those sorts of decisions to be taken on an individual basis by the courts, but that is the case whether or not a particular society approves of voluntary euthanasia! That is the case in which most societies work, so nothing I have said is designed to recommend a policy shift in that direction.

I would recommend a policy shift to permit voluntary euthanasia with certain safeguards, which could be discussed, but I am not recommending, as it were, a general policy of accepting other forms of euthanasia. I know that nonetheless, all societies do take those decisions, and rightly so, but I think it is highly appropriate that those are always taken by the courts, and always on a case-by-case basis.


50KCE SELECT COMMITTEE, FRIDAY, 21st MAY 2004 Oral Evidence

The Chairman: Prof- Harris, if I could just introduce Mr Downie, who arrived at 10.15.

M r Downie: Good morning.

The Chairman: Before we move on to my colleagues, could I perhaps pick up on a point that you made? I am paraphrasing here, so you can correct me if 1 am wrong, but you said words to the effect that ‘I do not believe there is anyone who has a principled objection against euthanasia.' Would that be a fair...?

Prof. Harris: Who has had put to them the case that I put to you of the policeman’s dilemma? 1 find it inconceivable indeed that anybody would say it was wrongful, that that policeman’s actions were wrongful. (The Chairm an: Yes.) Indeed, it would be a very strange, cruel and unusual person who might say such a thing. In other words, I think that people, when they say they are opposed to killing in all circumstances, have not thought it through, and have not confronted themselves with a case like that, or with others that exist in the real world, or might be constructed

The Chairman: When you make that statement, could I ask what consideration you have given to people who have very clear faith arguments to the contrary?

Prof. Harris: I would like to know what those people would do in the policeman's dilemma case, and how they would justify what they would think it appropriate to do.

The Chairman: So, quite clear. I am just being clear that you have considered that, and that is your response.

Prof. Harris: I think anybody with... Whatever the basis, I make no distinctions between faith-based objections or faith-based reasons for any actions and other good reasons- and I do not say that faith-based reasons are not good reasons - but all reasons are subject to scrutiny. No reasons, and no class of reasons, are immune from criticism, nor are they immune from the weight of evidence and argument that might be put to them.

So, in that sense, I do not think there is any class of reasons that has supremacy. Faith-based reasons, like all other reasons, have to consider possible counter-arguments and circumstances in which what, apparently, their faith dictates leads them into decisions that they would otherwise be embarrassed by, and I think the policeman’s dilemma is just such an embarrassment

The Chairman: And you go on to amplify that a bit more on page 19 of your paper that we have before us, where you talk about not only the scenario you described where the driver is clearly asking for the policeman to intervene, but in this case where the policeman... If I read it:

‘Now, consider a modified policeman's dilemma. Suppose thepoliceman can see what is happening, but cannot communicate withthe driver. He sees the driver must be burned alive, but cannot ask whathe wants or hear his requests.’

So, the policeman does not have that ‘comfort’, if you will, of the certainty that those are the wishes. Then you go on:

* Would the policeman still be justified in sparing the driver terrible suffering by killing him? I believe so and hope you do too, because the alternative is to take responsibility for the death by torture o f the driver.’

You would not be surprised, perhaps, if people would read... Actually it is quite a sinister, potentially sinister, 'slippery slope’, as you described it earlier the policeman decides to shoot based on his or her values rather than the persistent and competent requests of the driver in this instance.

Prof. Harris: I hope it is not seen as sinister. I was trying, honestly, to present a more difficult case for my own position, and to think my way through what would be appropriate in such a case, and having thought through what would be appropriate, I gave what my conclusion was and invited others to say whether or not they shared that conclusion.

Of course, there are difficult cases, and one could construct more difficult cases than that and there are more difficult cases than that in real life, and we all... Hopefully, most of us manage to escape having to face dilemmas like that, but when we do face them, it does not seem to me that we are aided in the resolution of those, by appealing to a principle like the sanctity of life. We have to actually decide what it would be right to do, knowing that we could get it wrong, and in the paper I produced that further case because it is less clearly a case in which everybody would agree with me.

I think people were beginning to part company, and I think it is everyone’s responsibility to think their way through cases like that. My own view is, having thought about it, it would still be the right thing to do, but it is a closer call. But. at what point it would still be a close call... You have to imagine, as I tried to do, the policeman hearing that driver scream as he was burned and knowing that he could do something to end the suffering, and still not doing it, even though he could not ask the driver what he wanted, and I do not think I would be ashamed of the answer that I gave.

The Chairman: Your evidence seems to be, and the examples you have cited particularly are, predicated on the basis that people generally behave in a humane, human... reflect human values of love and respect and consideration. Sadly, in the real world, that is not always the case. What checks and balances would you envisage that, in our case, any regulations would need to reflect to include appropriate safeguards?

Prof. Harris: Before coming to the answer to your question, I do think that, broadly speaking, people are morally motivated. Most people, even those who disagree with me, are decent people who are trying to do the right thing, and it is all of our responsibility to make that assumption on behalf of our fellows, to treat them as honest, decent people and to respect their views, but having done so, we then have to think our way through to what the right course of action would be.

I think any society contemplating legalising or institutionalising voluntary euthanasia clearly has to have the whole enterprise very well regulated. There have to be clear criteria, and, in particular, there have to be clear criteria for obtaining consent and being assured that the consent is genuine and that the individuals are not coerced, and, of course, the best way to do that is to actually try.



For example, many of the cases would be cases of people who are ill, and most illnesses are progressive, so there is a long period where you could actually find out what people’s intentions would be at particular stages of an illness, long before pain or distress or, indeed, loss of competence overtake them, and make it impossible to get a valid and appropriate consent But I am not a legislator, I have tried to think of these things, as it were, from the point of view of principle. I am not proposing a Bill on voluntary euthanasia, and I am not a barrister who drafts legislation, so I have not actually gone into all of the sorts of safeguards and how they might work, but I do not think they are beyond the wit of man to devise.

The Chairman: Mr Downie.

M r Downie: 1 would just like to put a scenario to you that you explained to us, built round this person in the car who was obviously suffering an awful death. How would you feel if there was a criminal who had been charged on a number of occasions with serious crimes, murders, who had walked free from the courts for whatever reason, and who was involved in an accident on a quiet road one night, and, although he might be trapped in the car, the police officer who was the first at the scene decides to shoot him in the head and set the car on fire?

That is another analogy to the one that you have given, and what we have got to try and do is look at these issues and see if there is a legal framework that provides a protection measure. After the inquest, the cause of death on both of those occasions, in the analogy that you spoke of, would be death by gunshot wounds, so using that perspective, I think, would you not agree, we are in a very, very difficult area by using an example like that?

Prof. Harris: I do not think so. With respect, you put to me a clear case of murder and, like you, I disapprove of it and would not condone it. I put to you a case where the facts were very different. The dilemma arises because, in some sorts of cases, facts are difficult to ascertain. That is an endemic feature of human life.

There are cases where facts are difficult to obtain. There are cases where evil people can attempt to manipulate circumstances. We are not ever going to eliminate those, and it seems to me that our policy should not be dictated by fear that, in some bizarre set of circumstances, a malicious person might manage to commit a murder under the cover of, let us say, voluntary euthanasia, any more than we should deny a society the benefit of general practitioners because we know that there are people like Harold Shipman who may kill hundreds of patients and abuse their power.

We need the services of GPs. We know that puts huge power into the hands of GPs and, just occasionally, as in the case of Harold Shipman, that power is abused by a particularly evil individual, but, it seems to me, the right lesson to take from that is not to say that we will abandon general practice; the right conclusion to draw is that we will ry to regulate it as well as we can, that we will encourage people like coroners to be vigilant, and we will hope for the >est, but that is all we can do.

M r Downie: I think one of the dilemmas that the Committee faces is that ethically it is wrong for the medical •rofession and the nursing profession to assist in a person’s

death, and that is bound within their various codes of conduct, so could I just have a view from you: if we were to progress voluntaiy euthanasia by whatever means, how would you see anyone overcoming that significant obstacle?

Prof. Harris: It is true that professional bodies of doctors like the British Medical Association are not in favour, as I understand it, of voluntary euthanasia, but I think it is not true that it is unethical for medical practitioners to assist in the. death of individuals. They do it all the time.

On any occasion when analgesics, pain-killers, are given in a life-shortening dose, which they very standardly are, doctors are doing precisely that I know, personally, many of the surgeons who were involved in the separation of the Manchester conjoined twins. They knew that their actions would involve the death of one of those twins. They took the view, and the courts upheld the view, that it was justified in those circumstances to save the life of the other twin who could be saved.

So, I do not think it is wrong or unethical for medical practitioners, or indeed any human beings, to assist somebody to die in appropriate circumstances. There is an issue of freedom of conscience, and I would certainly not suggest that any medical practitioners should be ordered to assist, if they do not like it, any more than medical practitioners are ordered to assist in, for example, terminations of pregnancy if that is against their conscience. It is very important to maintain the freedom Of conscience for individuals, but I know that many doctors would regard it as unethical to sustain people alive who do not want to have their lives sustained, and whose lives are made miserable by having their lives sustained in particular circumstances.

M r Downie: You gave the quote there ‘appropriate circumstances’. I wonder if you could just broaden that a little for the Committee and tell us what you think appropriate circumstances would be for a person to be euthanased.

Prof. Harris: I think it is very important, at this point, to be clear whether we are talking about, for example, medical assistance with medically-assisted death or whether we are talking about the question, ‘In what circumstances should an individual be free to end their own life?’

I think all individuals should be free to end their own life whenever they chose. It does not follow from that that they should necessarily be entitled to assistance with that. If one is talking about legalising voluntary euthanasia, then one is talking about assistance, almost certainly medical assistance, because we want the assistance to be competent and so on, and, in those circumstances, I think we need, as societies, to decide in what circumstances there will be provision of medically-assisted dying.

As you probably know, there is a Bill currently in the English Parliament for medically-assisted dying in very limited circumstances, the Joffe Bill. That is one way to go: that people have to be terminally ill and so on. It would be a matter for you to decide in what circumstances you would provide medical assistance with death. I, personally, would provide it in all cases where somebody wants to die and is unable to end their own life themselves for whatever reason; maybe they are institutionalised, maybe they lack the appropriate skills. Almost no proposals for the legalisation of voluntary euthanasia use that model as the right model; most want to insist, as in the Netherlands, that there be a



background of illness and so forth.I am not in die business of making policy recommendations,

so I am not here to urge you to accept one model, or indeed any model, of voluntary euthanasia. My own view is that end-of-life decisions are a matter for the individual themselves. One dimension of that entitlement is suicide; other dimensions of that entitlement are medically-assisted dying. I think, given how rare jurisdictions are that have permitted euthanasia, all jurisdictions are reasonable to start cautiously, if for no other reason than that it is reasonable to take as many people with you as you can. You want the consensus of society.

You have to decide, in the Isle of Man, what it would be, to start cautiously in this area. I think that is not a matter for me.

The Chairman: Before we move to Mr Rimington, I have been advised that'we are speaking very softly, so I am going to just move the microphone along, if you bear with me a moment, John.

M r Rimington: Could you, for the record, just describe your background, if you like, who you are and what you do, what brings you to this position today?

Prof. Harris: That is a very good question. Somebody asked me, I think, is the short answer to that.

I am a philosopher by training. I have spent, I suppose, most of my academic career working in the field that is now generally called bioethics, which used to be called medical ethics.

I suppose my qualifications for talking about these sorts of issues are that I have studied this subject for 30 years and that I have written 15 books and over 200 papers on ethical issues, mosdy concerning the biosphere, many concerning medicine. I am a member of the Ethics Committee of the British Medical Association. I am a member of the Human Genetics Commission, which advises the UK Government on the ethics of genetics.

None of that means that my opinion should be taken any more notice of than anybody else’s. It seems to me that all judgements on ethics, but particularly those where matters of life and death are concerned, must be assessed on their merits, so I would urge you not to take any notice of what I say on the basis that I hold a professorship at an English university and that I do all of this other stuff; you have to look at the evidence and the argument and the way that they are deployed.

But, as I say, I did not invite myself here; somebody invited me. I do not think I have any special standing, and I do not think you should think so, either.

Mr Rimington: Obviously, the paper that we have had the pleasure of reading is about consent and end-of-life decisions. The voluntary euthanasia that we have been looking at has been about the consent of a competent adult’s persistent requests et cetera, and some of the cases that you have brought up as part of your discussion are where... Well, first of all there is the issue of the policeman and the window that is closed. That was obviously one dilemma, and there is that where people cannot give their consent because they are in a persistent vegetative state or because they are not a mature adult, as in the case of the conjoined twins, and there must be many other circumstances where that occurs.

Do you think that, in your personal opinion, if we were to go down this route, it should be restricted to a competent adult? You did, in one of your answers, talk about people who are institutionalised, and, obviously, I think that would flag up an area of concern. If somebody is institutionalised, can they be, if you like, a competent adult?

Prof. Harris: Just on that point, I was using 'institution’ very broadly. I have been institutionalised many times in my life, usually for surgical operations, but I did not lose my competence on that account I did not mean in mental institutions necessarily, so from the fact that somebody is in an institution and, therefore, does not have to hand the normal freedom of movement and of action that other people have, it does not follow that they are not competent or alert, but that point aside...

M r Rimington: Right I think that was the area that could be interpreted in many ways. That was a concern. Obviously, say, elderly people who are in -

Prof. Harris: It is very likely -

M r Rimington: - a residential home or nursing home are institutionalised, because they are physically incapable of looking after themselves in their own home, but can still read their newspaper and make conscious decisions.

Prof. Harris: Yes. I think it is important for us to remember that.

M r Rimington: So, on this issue of consent then, how far away... ? I am sure you are not suggesting our legislation should veer away from the competent adult, but you did discuss it in your paper and you have brought the issue up. How far away from the competent adult, the persistent request, should society even consider these issues, even if it cannot be by the mechanism of legislation, but has to be done on individual circumstances through the courts in each case?

Prof. Harris: Voluntary euthanasia needs to be just that; it needs to be voluntary. So, when we consider voluntary euthanasia, we are only talking about the competent, and it seems to me that if you concede the principle that the competent are entitled to make life-and-death decisions about themselves, that is one whole area of responsibility. In my paper, I was talking much more generally about a whole range of end-of-life decisions; I was not directing my attention solely towards voluntary euthanasia.

For those who are not competent, whether their incompetence is because they are too young, they are children, or because they have lost consciousness or for whatever reason, I think it is much more difficult to imagine sound legislation dealing in a general way with those. It seems to me that it is very important that those sorts of decisions, decisions for people who are not competent, be made on an individual basis by the courts.

So, I would not propose any general legislation enabling end-of-life decisions to be taken on a class basis on behalf of those not competent to consent. I think those decisions should be made by the courts on the basis of the individual circumstances of the case, as they currendy are, certainly in the UK. But I think when you are dealing with competent


Oral Evidence SELECT COMMITTEE, FRIDAY, 21st MAY 2004 53 KCE

people, you can, as it were, have general legislation enabling people to voice their preferences about end-of-life decisions and permitting medical practitioners to respond to those requests.

Mr Rimington: As you are obviously very well trained in the matter of ethics, you must obviously delve into the area of how resources are used, in terms of practice. One area that I encountered years ago - indeed, I was in Manchester as well, the South Manchester Health Authority - was the discussion of renal dialysis. The unit had limited resources because the pot was only so big, and the gentleman who was the head of that particular unit had to, in effect, make what might be called end-of-life decisions, in that he could only service with his unit so many people, and he had to decide, from his list of applicants, who was to come, knowing that the lives of those who could not come might be foreshortened. Do you see any relationship in that?

Prof. Harris: It is a very acute question, and I think there clearly is a relationship. Whenever somebody takes a decision which effectively denies an opportunity of life to someone else that they might have had, for example, had resources been available, they are taking a decision that ends that life. If I need a transplant to survive, for example, and I do not get it because you think I am a lower priority than one of your other patients and you are the transplant co-ordinator or the transplant surgeon, then your decision costs me my life, and we see that, of course, in the general scarcity of organs for donation and a whole range of other areas.

And, of course, there are acute ethical issues as to the appropriate principles that ought to be used to select between candidates for care, where resources are limited such that not all can be treated. I do have views about that, which I would be happy to share with you, but I think they might be taking us a long way from our present set of issues.

Why I think your question was genuinely acute and very important is that it is important to remind ourselves how common are end-of-life decisions, taken in societies, including by medical practitioners, but by no means exclusively by medical practitioners. We are constantly, as societies and as citizens, taking decisions which, effectively, result in other people dying. When we make decisions about decisions about seat belts, about speed limits on the roads and a whole range of other things, we are taking decisions that we know impact upon the survival rates of citizens; and I think it is useful to remind ourselves that we are not only dealing in life and death when we are talking about euthanasia or capital punishment or something veiy dramatic; we are constantly doing this. It is part of our responsibilities - 1 say ‘our’, meaning me as a citizen and you as legislators- and I think it is helpful to remind ourselves that the drama of life-and-death decisions is not only in these very acute areas which attract a lot of attention, but absolutely permeates the patterns of our lives. I think it helps us to see that this is actually not a great Rubicon but that it is part of our responsibility for our fellow citizens which is discharged in innumerable ways.

M r Rimington: Thank you. Thank you, Mr Chairman.

The Chairman: I am just conscious of the clock and /our tight schedule, Prof. Harris, but if 1 come back brieflyo my colleagues. Mr Downie? (Mr Downie: No.)

Mr Anderson?

M r Anderson: Can I just ask you: you stated that you thought end-of-life decisions are matters for individuals themselves. Is that regardless of circumstances?

Prof. H arris: I do not know. You give me some circumstances and I will regard them.

M r Anderson: Well, for example, would you support infanticide?

Prof. Harris: Infanticide? (Mr Anderson: Yes.) End-of- life decisions are of many different sorts, as I ... It depends what you mean by ‘infanticide’. I supported the separation of the Manchester conjoined twins, which effectively was infanticide. It was a deliberate decision to operate on conjoined twins, knowing that the operation involved the deliberate killing of one so that the other could be effectively separated. If infanticide is described in that way, I am in favour of that particular instance of infanticide.

The problem is we use a term like this and we imagine people hurling babies over cliffs or something completely inappropriate. This is rather like your question, Mr Rimington. In fact, we are involved in decisions. If you take infanticide to be the deliberate killing of a child, then I think there are circumstances when that is justified, and I have given you one such case.

If you wish to infer from that that I am in favour of infanticide, you may do so but, as I say, one needs to examine the cases on an individual basis, which is why I have said, and continue to say, that where the individual themselves cannot give a competent consent, these decisions must be left to the court.

M r Anderson: Why do you think that the Hippocratic oath, Christianity, Judaism and Islam all forbid euthanasia?

Prof. Harris: I do not think they do forbid euthanasia.

Mr Anderson: You do not think they do?

Prof. Harris: No. I think that they uphold principles of the sanctity of life and they apply them in particular circumstances and not others. I would be very surprised if the word ‘euthanasia’ is mentioned in the Koran. I certainly know that it is not mentioned in the Bible. I do not think they do forbid these things. I think that what happens, very often, is that a theological tradition evolves, in which, at a particular time, theologians of particular religions give views on an issue like euthanasia.

Religions are rather like constitutions: they are much more general, usually, subscribe to relatively general principles. But, of course, religions, just like legislators and just like philosophers, can be wrong, and if there is a religion that says that euthanasia in all its forms is unethical, I suspect they are making a mistake, just as we all may make mistakes.

Mrs Hannan: Could I just go back to the policeman, really? The policeman was put in this difficult position. Can I ask about doctors put in that position as well, your connection with doctors and talking about these sorts of decisions? Do you think that this is the slippery slope that you were talking



about before, where doctors are put into this difficult position and having to make more life-and-death decisions because voluntary euthanasia may be allowed?

Prof. Harris: I do not think they make more life-and- death decisions. Life-and-death decisions do not go away because you decide them in one way rather than another. They are still a life-and-death decision, and die responsibility for that decision rests with the person who is making it

It seems to me that we do not avoid decisions by having policies that mean that all decisions of a particular class are decided in one way rather than in another.

I myself am sceptical about slippery slopes. I think there is only one question to ask if somebody mentions the phrase ‘this is a slippery slope’, and that is: skis or crampons? Do we want to go up or do we want to go down? So long as we Can go up and have the power to do so, then we should not be frightened of slippery slopes. We should just know which way we want to go on those slopes, and that means deciding what is right at any particular point on the slope, and if we think this is right, we should not be afraid of making the right decision at this point on the slope, because a decision at another point would be wrong.

M rs Hannan: Do you think we discuss difficult deaths enough, or is there enough information about... We are all going to die, but do we talk about these issues enough?

Prof. Harris: I do not think we talk about them nearly enough, and I do not think people think nearly enough. When they say they are against... For example, why I said that I do not believe any people actually think that it is always wrong to deliberately take a life is because they have not thought of the... or they have not generalised their position to think about self-defence or to think about war or to think about dealing with terrorism. I was not just making a rhetorical point I think that that is literally true and I think we all should think about these decisions much more generally, and there is no substitute for public discussion and public education.

Whatever I think about the merits, let us say, of voluntary euthanasia, I would never recommend implementing it - or trying to implement i t even - in a society which did not want it. You have to carry people with you, and the way you carry people with you is, of course, to get their consent That is why consent, not only in euthanasia but in democracy, is absolutely the sine qua non of whatever one does. So, the more these things are discussed, the better and the more widely people understand the reasons why one might consider something like voluntary euthanasia the better, but, of course, often these things are only adequately discussed when people are taking them seriously, for example, when a proposal for legislation is brought forward, rather than simply in the abstract and probably academic way that I have been doing it for many years.

Mrs Hannan: Can I ask about... Is there any need for us to consider legislation such as this when we have hospices and we are more in control of pain and death and dying, with situations controlled in a set situation?

Prof. Harris: Yes, for two independent reasons. Firstly, 1 think it is a myth to think that hospices are universally effective in controlling pain, and I think the evidence bears this out.

Sometimes they can and sometimes they cannot. Hospices, like hospitals, like medical practitioners, are of infinitely variable quality. The fact that there is a hospice that somebody could go to does not mean that they will have a pain-free or an anxiety-free - or a terror-free, in the case of Diane Pretty or Geoffrey Wamock - last period of their life. That is the first thing.

The second thing is that some people would not like - 1 personally would not wish - to go to a hospice. I would have as much horror of a hospice where people would, as it were, ‘manage’ my pain in their terms and condemn me to a particular sort of death. I would regard that as taking away my liberty, and I would be as terrified of going to a hospice as I would be terrified of a painful death. I am not... Hospices are great for people who want them, and I am very pleased that there are hospices, and many people do want them, but many people, myself included, would not want them and would prefer to manage their last days in a quite different way. Even if - and this is, I think, a very big ‘if1 - 1 could be guaranteed a pain-free end to my life, I would nonetheless not wish to end it in a hospice.


The Clerk: Just one very short point, if 1 may, Prof, Harris. You have given us the case of the policeman’s dilemma, the most obvious example being where the window is open, to test the principle. Do you see any difficulty in arguing from the particular to the general? Do you see any room for the aphorism in this sort of discussion that hard cases make bad law?

Prof. Harris: I am not suggesting that we make law on the basis of hard cases. What hard cases tell us is whether or not we have a principled objection to particular courses of action. When we find that we do not have a principled objection, we are then in the position of actually arguing about which cases are justified and which are not, and hard cases do not help us answer that second question, but they do help us with the first question. They ftelp us see that it is either incoherent or cruel, or both, to think that we can always and without exception say that it is wrong to take the life of another human individual. Once we realise that we do not think that, we can start to think, hopefully, humanely, compassionately and creatively about which cases in which we think we should do this or permit it to be done and which we do not

So, I am not suggesting that... I use that case only to show that I do not think there is a person who does not think that if the policeman denied the quick death to that driver, they would be doing anything other than something very cruel. You could understand that they might not do it, but they would be wrong not to do it. We can leam from that

What we then do at the level of policy... When we are considering whether or not, as a matter of policy, a particular society should give voluntary euthanasia, at least we can see that there are cases - and I try to mention lots of others of them as well, the Manchester conjoined twins, Tony Bland and so on - where we do think it right to end lives, and then the only remaining question is: in the case of voluntary euthanasia, is it more like one of those cases or less like it? Is it a circumstance in which compassion, tolerance and respect for human life leads us in one direction or in another? And that, I assume, is the question that you are considering



when you consider whether or not you should countenance voluntary euthanasia in the Isle of Man.

The Chairman: Could I just conclude? I am conscious of the clock. Professor. Thank you very much for your time and efforts to come and give evidence.

Could I just ask if, from the perspective and the evidence you have given us, you think that society and, as far as you can gauge, society in a small community like the Isle of Man would be enriched or impoverished by the introduction of legislation that causes such diametrically opposed views to come into confrontation?

ProfL Harris: You do not avoid diametrically proposed views coming into confrontation by taking one decision on a controversial issue rather than the other. You simply decide which of those polarities is right, but you do not remove the polarities.

One thing, I think, might be useful to say in conclusion, and that is that I think democratic societies like yours and mine have a responsibility to respect human freedom and only to deny it when powerful reasons dictate that it be denied, and I think all democracies are enhanced where the democracy tries to maximise the area in which the citizen is free to decide for themselves the most important questions that confront their life. That is why we respect freedom of religion - quite rightly; that is why we respect many other freedoms.

It seems to me that the decision as to when and in what circumstances your own life should end is probably the most important and fundamental decision an individual can confront, and my own view is that it is part of our democratic responsibility to leave that decision to the individual.

The Chairman: Are there any further observations you want to make before we conclude?

Prof. Harris: No, thank you.

The Chairman: If, again, I could thank you very much, Prof. Harris.

. Prof. Harris: It was a pleasure.

The Chairman: It was a pleasure to meet you. Thank you.

The Ven. Archdeacon was called at 21.15 ajn.

Procedural

The Chairman: Welcome to the Committee. I think you know everybody on the Committee. (The Ven. Archdeacon: indeed.) I am conscious that you have a tight schedule also, ;o we will not have any preamble.

Perhaps, though, if we could turn to yourself, if you vould like to introduce yourself for the sake of Hansard, ind then if you have any introduction, and then we will go )ack into the question and answer, as we have just had with ’rof. Harris, if you are content with that.

EVIDENCE OF THE VEN. B PARTINGTON OBE

The Ven. Archdeacon: Certainly. Thank you.I am the Ven. Brian Partington. I am the Archdeacon of

the Isle of Man, and I have been a clergyman for well over40 years, all of that time spent in the pastoral ministry and much of it spent with the dying and the bereaved, as have my colleagues, some of whom are with me this morning.

I have considered afresh the theological and social issues which are around this area, and I have considered those again with my colleagues, the Church leaders from the other denominations, and, as you know, we have submitted our views to you. We had hoped that all of us would have had the opportunity to speak to you, in the way I am now, because we all, actually, have personal views. We have tried to consolidate those into the paper we have presented, but, obviously, we all come from slightly different angles.

I could, of course, spend a good deal of time talking about the theological reasons why I believe that life is a precious gift from God and has to be used responsibly and valued. The vulnerable, in particular, are to be specially protected and cared for, whatever the age, sex or race, I have got the greatest sympathy with all who are terminally ill, and especially those who suffer pain or fear death.

However, there have been such advances in pain control that there are very few situations where pain cannot be controlled, I know, from my personal experience of being a clergyman over 40 years ago, the time that one spent with people in very severe pain and the difference to today. The nights that I have spent - and others like me - with people who were dying and whose pain was uncontrolled; today that very, very, very rarely happens, and that is something, I believe, which we have to take significant note of.

What does exist is fear, whether it is fear of going into a hospice, fear of dying or fear of pain. The reality is, for most people, that they, in fact, can cope with that pain, with the help and support of the medical teams, whether it is in their homes or in nursing homes, hospitals or hospices, and that is one of the great advances which I welcome and want to see developed in the coming years.

I have been privileged to work with the hospice movement since it started here in the Isle of Man. I was, for many years, vice-chairman and, for eight years, its chairman, until 1996. I now only have an honorary position and have no day-today dealings with it at all. However, within that movement, one has seen that development, which I mentioned before, of pain control gathered and, although I was not involved in any way with the patient care, from my own pastoral work with people I was concerned with, the ability there for people who often were afraid to enter a hospice, but often then found that they had tremendous help and remission, and were able to go about their life for, sometimes, many years before death came to them.

For others, of course, life was much shorter, but they were able, within those weeks or days, to experience a quality of life which gave their dying that real meaning of ‘euthanasia’: dying well.

I believe that all medicine, pain control, is developing and is now excellent, but obviously we want to see it get better. Many of the developments in palliative care have been further developed and will be in the years ahead, and it is our hope, of course, that all the dying can have the very best care.

The European Convention on Human Rights says

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. J HarrisProcedural

House of Keys Select Committee on Voluntary Euthanasia - Evidence of the Ven. B Partington OBE

56 KCE SELECT COMMITTEE» FRIDAY, 21st MAY 2004 Oral Evidence

everyone’s right to life will be protected by law. Whilst there are exceptions, there are none to the absolute value of life that have permitted the deliberate taking of life in the alleged interests of a patient. I think the classic case, in 1957, the Adams case, noted:

‘I f the first purpose of medicine, the restoration o f health, could no longer be relieved, there was still much for the doctor to do, and he was entitled to do all that was proper and necessaiy to relieve pain and suffering.’

I believe that the cases that have come since then have followed that principle, and some of the exceptional cases which the previous speaker mentioned, of course, have been helped by that, and that is crucial.

Whilst it is no longer a criminal offence to commit suicide, it is to assist die suicide of another. 1 am aware that the right to kill should be limited to the medical profession, and only in compliance with well-attested requests made by a patient who, when he or she made it, was in full possession of their faculties: that is the case made for voluntary euthanasia.

That creates a dilemma for a doctor when a patient is not able to express their wishes. We have heard the case, in America, today... Other doctors 1 know have told me of severe road accident situations they have been involved in and the difficulty of making decisions in those cases. I would also mention such people as stroke victims, people with degenerative diseases and some disabled persons who are no longer able to make a decision for themselves. All of those could inhibit the doctor’s clinical discretion.

1 would like to point to the relationship between the patient and the doctor. Today, you have a great deal of confidence between a patient and a doctor, 1 believe, but I am not the only person in the world who fears the look of the syringe when it comes, and for many people, in fact, that becomes quite a neurotic feeling.

If, in future, the law is going to allow doctors to kill, even though under strictly circumscribed conditions, the effect for many will be a disastrous blow to the confidence which they have in their medical attendants. A Bill to authorise euthanasia, while it may bring comfort to a sophisticated few, could well bring unease to the mind of a.much larger number of patients and their families.

I mentioned human rights a little earlier, and we think of the patient there, but there are also those rights of the family, of the medical profession and of those in society around. One cannot demand of them on behalf of the other. My pastoral experience shows that many elderly people already feel pressure. Very often, families would be horrified if they knew what some elderly people say to their clergypeople or other visitors, probably their medical teams, as well, but many feel the pressure that they are holding up something happening in life, that they are stopping their family, perhaps, having their house or their possessions and that they could benefit from them.

I could quote individual instances, but those are all subjective. But it is not uncommon. At the very end of life, there is a real opportunity for a closeness and a love to be expressed and shared. We, as a society, if we close this door, are inhibiting the fullness of life to the end. Society has to strive for the very best standards for all our people from birth to death, and to allow a ‘customer choice' devalues life and could well lead to a falling of standards in how we care for people. Convenience will replace care.

Just to conclude my opening remarks, if I could just

say one or two things. First, in its narrow sense, euthanasia implies killing, and it is misleading to extend it to cover decisions not to preserve life by artificial means when it would be better for the patient to be allowed to die. Those decisions, coupled with the determination to give the patient as good a death as possible, are quite, in my mind, legitimate, and those decisions should be taken in full consultation always with the patient and their family.

If all the care of the dying were up to the standards of the best, then there would be very few cases in which there was even a prima facie argument for euthanasia. Better alternatives alleviating distress would almost always be available, if modem techniques in human understanding and care of patients were universally practised. It should be the aim, whatever the cost, to improve the care of the dying in hospitals and hospices and homes to as near this standard as money and staff will allow. Ignorance and mistaken ideas do exist, and they need to be addressed However, the financially stretched Health Service must not be allowed to forget or use euthanasia as an excuse for caring fully for the dying.

To justify a change in the law to permit assisted suicide, it would be necessary to show that such a change would remove greater evils than it would cause. I do not believe that justification exists. For it to do so, you would have to... Such cases are few, and would be fewer still, if all medical practices were sounder. A change in the law would reduce the incentive to improve the practices. The legislation would place some terminal - and, I believe, even some non-terminal- patients under pressure to allow themselves to be ‘put away’, a pressure that they, at that time of their life, should be spared. It would also, in practice, be likely to result in a recourse to euthanasia, in cases in which it was far from morally justified and would be performed for, I believe, unsound reasons.

In the rare cases, if there are any, in which it can be justified morally, then it is better for medical practitioners to do all that is necessaiy to ensure peaceful dying, and to rely on the flexibilities in the administration of the law which do now exist, than to legalise assisted suicide, which would have to be subject to rigid formalities and safeguards for general use. Although there may be some patients whose relationships with their doctor would not suffer, 1 believe that, for the greater majority of patients, their confidence in their doctors would be seriously weakened. It would also put an intolerable strain on the doctors themselves.

We concluded our remarks to you with the statement: all our efforts should be in allowing everyone to live life to the full and to die in dignity, whatever their circumstances. Death should not be regarded as a failure, for it is part of the natural cycle. We sincerely believe that, and believe that this attempt to introduce voluntary suicide is, in fact, going to inhibit our society rather than enhance it.

The C h a irm an : I turn to my colleague, Mr Rimington.

M r Rimington: Thank you.I have a range of things I could ask, but I have not

formulated many of them. Just picking up on your last point, obviously, death is part of the natural cycle, as you say, and that natural cycle includes life, doesn’t it? I presume it would include life. And do we not make decisions about life and the coming of life and the resources we put into those who come into life, at that point of coming into life?



The Yen. Archdeacon: We make decisions at all points in our life. I am not aware of your real question yet.

M r Rimington: You are saying there should be no intervention in the natural cycle, if you like, at death because death is part of it, but do we not make interventions all through that natural cycle, including life at the beginning, in the sense that we apply medical intervention to bring about life at birth, sometimes at great cost in resources to society, through special care baby units? That would not be part of the natural cycle but is an intervention.

The Ven. Archdeacon: 1 am not saying there should be no medical intervention, and I have said about pain control. Obviously, if a person is suffering firom pain, we do not wish to see that; we wish to help them with that, and that is a medical intervention. What I am saying is that we should not unnaturally end their life. Obviously, some of the analgesics, as we are aware, in pain control, will shorten life. They have that effect. We do ¿at... That, to my mind, is acceptable if we are helping the health of the patient.

M r Rimington: Can I play devil's advocate? It is obviously fair to say, in an issue like this, which polarises people or, certainly, divides opinion, that people take on the arguments that will appeal and suit their case on both sides, and, indeed, we will ¿ways take facts or evidence from both sides and present it as facts. This is the nature of whether it is euthanasia or whatever we are talking about

And the root of, I would say, your objection, and that of your colleagues, is theological, your Christian belief, theological belief, and whereas I have no concern about that in the slightest, in many of the things that you talk about you use the expressions ‘vulnerable’ and ‘pressure’, which are, in my mind, emotive terms and used in a manner to, if you like, enhance your position. The real reason for your opposition is theological, which I have no problem with, but should your theology, possibly, impose itself on somebody else's theology?

The Ven. Archdeacon: I am glad you allow me to have a theology of my own, and I am grateful for that, (Laughter) because I think we each deserve it in society.

This western society is built on Christian values, and to dismiss those is to dismiss what this society is built on. I think we should be, first and foremost, aware of that I cannot separate my beliefs from my life and my views, and I would not wish in any way, shape or form to do so.

However, as I said at the beginning, for over 40 years I have worked with people. That has been my primary work, within communities, and many of those people have been vulnerable people, whether they have been ill or in other situations, and to help them, one has to bring in all the resources one has. But your first concern is not to think, ‘God wants me to be here’; my first concern is, ‘What is the need of that person, and how can we best and most help them?’

That was, certainly, why the hospice movement was created in its modem form, and why it is being developed here in the Isle of Man and I hope will continue to develop and enhance the rest of the medical services to the Isle of Man.

So, we are, in fact, not trying to force our views on any part of society. What we are trying to do, and I am trying to do, is to work within our society for a better society, and if

one looks at whether it is the health service, the educational service or any other part of the Government service that you have today, and you are partly here to administer, it is to see that this was built on a Christian basis.

M r Rimington: Right. Okay. Obviously, I have just put ticks against some of your paragraphs in your evidences. I think we would all agree that Hospice is a good thing. I know that the previous speaker said for himself, personally, he did not wish it. I think that is neither here nor there, in a sense. It is there for those that do wish it, and it is, obviously, a very good thing.

You said that your focus there was on the needs of that person who was in that position. If that individual’s need, as they see it - and I would venture to suggest it would be a very tiny number of people who may pass through Hospice or are eligible to pass through Hospice, so small that it is infinitesimally small, but in the Isle of Man, at the most, a handful in any one year - is to be allowed that option at that final stage of their life, why should they be denied?

The Yen. Archdeacon: You accuse me of using emotive language. I sat for an hour hearing a lot of emotive cases. However, you are actually taking something which you do not have the facts for - and I do not have them here - about the numbers who go through Hospice Care. Hospice is a building; it is St Bridget’s, However, there are many, many more people who receive that care within the community, and I would suggest to you that those figures are not a handful; they are a very large percentage of people who are dying here in the Isle of Man.

M r Rinungton: Oh, yes. I agree.

The Ven. Archdeacon: That was not what you said.And secondly, the number of people who, I believe,

would wish to have voluntary euthanasia would, in fact, really be a handful, and we are seeking here to make law for a handful of people and not the majority. There are the statistics which some of the media have quoted from popular vox pops of ‘What would you like to happen?’, where people say, ‘I would choose this for myself.’

My persona] experience is that it is easier to say that when we are healthy and wealthy at 30 or 40 or even 50, but when we come to that situation ourselves, people’s views change. When we face death, priorities change, and what we find important in life is that time one can spend with family and loved ones, and that becomes the precious moment That is the kind of thing which reduces, at that point in life, this high percentage, when we are thinking about it, to the time when it comes to us, to maybe a very small handful of people.

Mr Rimington: Sorry. I will not go on any more. I am sorry if it came over incorrectly, I was referring to the fact that the people who might wish to Consider voluntary euthanasia would be, on an Island this size, literally a handful, and that was abstracting from elsewhere, larger states, and bringing the numbers down to the Isle of Man’s size. I think it equalled one per annum, so obviously it would be a handful.

Can I just ask for your comment, then, on what has been put forward to us in the past about the situation in Oregon, where they do have legislation and it is within the hospice brief as well as, if you like, an end-of-life option, or an end-of-life option in some hospices within Oregon? Of the



figures of people who have requested - and obviously even the numbers of people who have requested are small - this assisted suicide in their latter stages, only one in six of those were permitted because of the safeguards, if you like, in the situation, and then the actual number of people who took that decision through to the full was one in ten, indicating that, even having requested it and having been permitted it, individuals in fact then did not choose to do so.

The Ven. Archdeacon: I cannot really comment about the Oregon situation. I have read different statements from different sides. I have never been there. I have never studied it, and I cannot really comment about that, but I believe what you indicate, that the number reduces, is relevant

Mr Rimington: Yes. Thank you.

Mr Downie: Yes. Archdeacon, you said in your opening remarks that during your many years of service in the community in visiting people in their home, often those terminally iU, you have seen great strides in the development of medicines and techniques which have ended suffering to some extent I wonder if you would just broaden that out a little bit for me.

The Ven. Archdeacon: 1 have used an example before, and it is a personal one. I mentioned spending nights with people.

In my early days of ministry, the only painkiller really given was a morphine and it was in tablet form, and when people were coming to the end of their life, they could not swallow. Often the family would ring for a minister or a priest or a friend to go in and we would go late at night, because that often ¡seemed when the pain was the worst, and we would sit there with them until the early hours of the morning, when, perhaps, they died or, perhaps, they felt better or went into a sleep. Often, you would leave the house with your hand literally bunched up because they had been gripping through the pain.

The times when we get called out at night now are very few indeed, because the pain control is there. That is a very simple and personal analogy, and I do not want to base a whole lot... But I think it is evidence that the skills... The loving nursing care was often there before, but the skills and the medicines and the aids were not What we have to do, as a society, is make them readily available to all.

Mr Downie: Right. During your many years, I suppose, in the vocation that you have followed, did you often come across people with a view that they would like to exercise their rights or, for example, ‘It is my life. It should be my decision’? What is your view on that?

The Ven. Archdeacon: Very limited. I think, as I have said, in a general discussion at a philosophical level, people early in life would often express that. When it became nearer the time, it became, in a sense, much more real and people did not feel that to that degree.

I think what one has is another element, with many elderly people who are not necessarily terminally ill but are coming towards the end of their life, because they are more frail and they are not as active. Perhaps their partner has died and they are alone, and often they would say, ‘I go to sleep at night and I ask Him that I do not wake up in the morning ’

and statements like that, but that is an acknowledgement that we are getting weaker, and we cannot sustain ourselves as we once did and a loneliness, perhaps, that comes in, rather than the desire that ‘I wish my life to be taken for me.’

M r Downie: I think somewhere in your opening remarks, too, you said you felt it was the duty of society to protect the vulnerable, and we heard the previous speaker’s remarks. I just wondered if you had any views about people who may be in a vulnerable situation. Obviously, one of the contentious parts of looking at what happens in other jurisdictions regarding euthanasia is this fear that those who are vulnerable will perhaps not get an opportunity to have a say. I wonder if you could just give us your comment about that

The Ven. Archdeacon:. I think that is very relevant I think of someone who was a Down’s syndrome person, who had been, in fact, suffering from cancer for some years and that came. She was in no position to make a conscious decision for herself. That could only have been made by someone else, and I think she was a vulnerable person. Within the life that she had, she had loved and enjoyed and, even until her death, continued to do so. It would have been easy, I think, whether that was within the family or within the medical profession, for others to have made a decision for her which would not have allowed her to live the life that she wanted until the end of her life. I think there are those of that case.

Professor Harris, of course, was speaking of exceptional cases, and I think it is relevant One of the most difficult illnesses that we have to face in society is the motor neurone, and those of us who have been with patients with motor neurone are aware and conscious of the very great difficulties.I think we should be aware that in the Diane Pretty case, of course, which was quoted two or three times this morning- a very sad case in many ways, a very difficult case - Diane Pretty did not choke to death. She died peacefully.

I think it is the fear which often, with motor neurone, is one of the worst things that they have. The actual facts, I believe, are quite different We have had a number of cases in this Island and we will continue to have them, unfortunately, but we have got to give them whatever love and care we can. But they are amongst the most difficult ones. I mentioned earlier the vulnerable, and I think of those with degenerative diseases who are no longer able and I think, particularly, whether it is because of personal experience or not, of many who have had serious strokes, crippling strokes, and they are very vulnerable to me.

M r Downie: Thank you.

M r Anderson: Yes, thank you.Just a couple of questions to start with. It was good to

have somebody speaking from the sharp end, it was quite . refreshing having somebody speak about that, but maybe you would like to just touch on the area of people that you are representing because, in your opening remarks, you said that the group was frustrated that individually they are not being represented and you are actually representing quite a broad group of Churches. Is it fair to say that it is unusual to have such a consensus from such a broad group of Churches?

The Ven. Archdeacon: I think it is fair to say we have not actually come together very often to look at issues, and



perhaps we should do that more often. That is our personal criticism.

However» in this case, when I invited the other leaders to join with me, we all came from our separate viewpoints, but what we had was complete consensus, and I think that is to be noted across the Churches. Individual Churches, in their denominational roles, have, in fact, produced a lot of work in this.

The Joffe Bill, of course, is going through the House of Lords at the moment, and the Committee is meeting on that. The Churches across the spectrum are involved there in studying those and putting in their input at a very deep level, as they are in other social issues. We, in the paper we produced, were in total agreement We have not gone out for our Synod votes to endorse what we have said. We believe that we are addressing you as a group of responsible Church leaders, and we hope you will take it in that way.

However, our church people are aware that this has been going on and we have been doing this and, as far as I am aware, we have had total support from them. No-one has contacted me from my own denomination or anyone else’s to say, ‘We do not agree with you on this.’

Mr Anderson: Thank you.It was very interesting to hear your positive experience of

Hospice, obviously being very closely involved in that over the years. Do you think there is a case for more education in this area, having listened to the previous speaker this morning? There seemed to be an implied fear there of the hospice movement, and maybe we are better educators in the Isle of Man than in the UK in that sense, because the Hospice is very central and very well respected in the Isle of Man. Do you think there is a case for educating people about the role of Hospice to take those fears away?

The Ven. Archdeacon: I think it is not just Hospice; I believe we have got to start with talking about dying. I think we have a fear in society about dying, and, therefore, we do not address i t It is only when it becomes very real to us that we actually begin to look at the issues, and I believe at an earlier age we have got to think about dying as a natural part of life, as the very end of our normal life. We also, I believe, have to help people to know what can be done in healthcare,. right through life, from the tiny child right through to the very oldest person.

In the Hospice, of course, what is crucial - and has to be within the Health Service as a whole - is everybody has to be treated as an individual and with respect, and when that happens, they are not being treated as numbers or cases, but as people who have real problems. Then things happen.

I have seen, many people go into St Bridget’s, in fact, whether it has been just for some pain control or for some care on a temporary basis, or whether it is for that final terminal stage, who have had a fear they were crossing a door they would never leave, and that is an understandable fear. I think what one has to show is the quality that can be there to the very end of life, and the vital moments for me, in all my experience with Hospice, have been those hours before a person has died which they have spent with their family, when they have been able to express their real love for one another, sometimes to say, ‘I am sorry for what we have got wrong in the past’, and been able to share the simple things together.

Often that involves faith because they begin to talk about

faith at the end of their life, but many, many families that I have shared with, not particularly because of my role as a priest, but because I simply knew them, have valued that time as something quite exceptional, and that is something we have got to help people to understand. Whether that is in their homes or in hospital or wherever it is, that is the kind of quality of living until the end that we have to help people to have.

Mr Anderson: Thank you.You, obviously, work very closely with people looking

after and caring for people in their last years, and nurses and doctors in particular. Do you think that a change in our legislation, if the legislation of all the jurisdictions round about was in any way different to ours, would be sending out the wrong message to the people we are trying to attract to the Island to work in that profession?

The Ven. Archdeacon: I am sure it would have a very negative reaction in various ways. One would certainly be to the community outside. Certainly, in my dealings with people in other islands, I have had a reaction already to the consideration for this, in a veiy negative way. I think it would have a very negative reaction within our own community, because life then becomes purely a commodity to be discarded when we no longer wish it, and I think that is something which we have got to be very careful about I believe it would have a negative reaction within those who we depend upon so much, our nurses and doctors and carers. They who work so hard to give us health and a quality of life are then able just to switch it off, and I believe that we have got to be very careful that we do not go down this way.

Mr Anderson: You obviously visit people in different stages of their illness. Do you see differences in their moods as their health goes up and down and their attitude to life?

The Ven. Archdeacon: Yes. Obviously, people do, at times, become very depressed and worried, so we very often find that from one day to another... The second thing, of course, is that often when a visitor goes - I could be a visitor - they put on that great brave face. The alternative is, very often when a family member leaves, that they, in fact, will then say for a few minutes the things that really concern them, and then they pass on and try and put on the brave face again. There is a great deal of unease and fear and anxiety, and that can lead, of course, to our mood changes, as you call it

Mr Anderson: Just finally from me - 1 know you have got a tight timetable - do you think that people that are in the position we are talking about...? How many people do you come in contact with, in all the period of time that you are pastoring people, that...? Are we talking about a very limited number of people that would be making this request and, as a result of that, do you think that we should be making legislation for a minority group when we should be making legislation to protect the majority? Would you go along with that argument that any legislation that we should be putting into place should not be for a minority but should be for a majority?

The Ven. Archdeacon: From my subjective view, I have not met anyone who has said to me that ‘1 believe that I



should be able now to have my life ended’, even those who have been very severely ill and even, in early years, when there was more pain. I believe that they, in fact, are all really wanting to enjoy what they still have. I am sorry. I have lost the track of your question there.

M r Anderson: What I am really saying is: do you think we should be making legislation for a minority group, opening it up to a larger vulnerable group? The ‘slippery slope’ argument could come into being.

The Ven. Archdeacon: 1 have not used the phrase ‘slippery slope’ all morning. I do not particularly like it, but I think there are dangers if we make legislation for a very small minority of people, who I believe that to be only...

M rs Hannan: Surely, in a democracy, it is up to the majority to look at issues such as this, which are very difficult issues, and even if it is only one person that we are talking about, it is something that, in a democracy, we should consider?

The Ven. Archdeacon: I think we have got to consider the situation in democracy, and I am not opposed to it being considered in this kind of way.

However, I think we have got to act for the common good in this as well, and if what are the rights of one person inhibit others, then what is that right? I would suggest that, in this case, it is not.

Mrs Hannan: Could I ask about the legislation that surrounds the operation of Hospice? What sort of legislation does Hospice come under?

The Ven. Archdeacon: It comes under the legislation that we have in the Isle of Man at the present from the operation of treatments, just as any other medical establishment

M rs Hannan: So, there is consent when someone enters Hospice for whatever treatment that you talked about, relief of pain and suffering?

The Ven. Archdeacon: Yes, of course, and I think that is one of the crucial things. I think the medical profession has a very difficult task, because their philosophy is to help people to be well and to care for their good health. When one moves to a terminal stage, it is helping them to die well, and that is a different philosophy.

I think that is a very difficult one and one it has taken, in many places, the medical profession some time to come to terms with.

There is that transition, but it always has to be under the legislation that we have available and it always, in particular, has to be with the full knowledge and consent of patient and family. I believe it is there where they take on the responsibility, and if, when it is explained to them what the treatment is, it is for the patient to say, ‘No. I do not want that’, then it would seem to me always to be wrong to enforce it So, it should be the freedom of the patient at that point to say what they wish, in the full knowledge, when it is explained to them.

Mrs Hannan: If a patient requests a good death within Hospice, then that should be adhered to, is that what you

are saying?

The Ven. Archdeacon: It depends what you arc meaning by that

Mrs Hannan: Euthanasia means just a ‘good dying*.

The Ven. Archdeacon: Well, euthanasia means being killed.

Mrs Hannan: No, no. I think it is what people read into it -

The Ven. Archdeacon: Dying well is what I would see. If you are talking about pain control, then what it seems to me is the patient is saying, ‘Please help me to have my pain controlled.’ If that is such a strength -

Mrs Hannan: But if you are consenting to the delivery of pain relief - 1 think you said pain relief and ending of suffering - on one hand and on the other hand you have got someone who actually consents to... Maybe it would only be a week’s difference in that person’s existence... We are talking about Hospice, we are talking about the relief of pain, we are talking about the good work that is going on, but we know that, within that situation, that person is going to die in the very short term, in most cases. I just cannot understand how they are consenting to pain relief and ending suffering which might lead to their death, but they cannot consent to what you were saying, they cannot consent to it happening this Tuesday, as opposed to next Tuesday.

The Ven. Archdeacon: It depends on which day you go shopping, I suppose.

Mrs Hannan: No, it was not about that. I am talking about dying.

The Ven. Archdeacon: I appreciate that. I am being facetious.

Mrs Hannan: The majority of people - the majority - 1 accept do not want to die, but we all are going to. Would you accept that?

The Ven. Archdeacon: That is what I have said. Yes, we all are. What I am saying is -

Mrs Hannan: This consent I am looking for -

The Ven. Archdeacon: It is -

Mrs Hannan: You are consenting on one hand, and on another hand you are saying that somebody cannot -

The Ven. Archdeacon: What I am saying is that we are relieving suffering, and that is relieving pain and distress, and we do that under, obviously, the medical direction to relieve that suffering and distress to such an extent that they can actually be peaceful, but to give it in such a strength that it would actually kill them there and then is wrong.

But what we are allowing them to do is to allow that strength so that there can still be a quality of life. Those of us who spend time there know that people very, very often

House of Keys Select Committee on Voluntary Euthanasia — Evidence of the Ven. B Partington OBE


have great periods of clarity with their families, almost until the time of their death, and that is helped by that relief of pain.

Mrs Hannan: You do not think that could happen under somebody making a decision to enter into a request to die? You do not think» then, that they could have that same relationship with their family, where they could actually talk through the issues that they wish to approach in a competent way, if they decided that they wanted help with dying, as opposed to relieving pain that you are talking about?

The Ven. Archdeacon: Obviously, people have got to talk through - we hope they will talk through - together the issues, but what we are saying is that it should not be ended by a direct action, but it should be ended naturally when relief has been given.

Mrs Hannan: It is surely not naturally, then, is it?

The Ven. Archdeacon: Yes, it is natural.

Mrs Hannan: Surely, if it was natural, you would allow people to have the pain and die. It is -

The Ven. Archdeacon: I think we are all clear -

Mrs Hannan: You are intervening by helping.

The Ven. Archdeacon: This is going back to what Mr Rimington was saying: we are intervening from birth right through life in different ways, and that is part of caring for people, which I would ascribe to.

Mrs Hannan: If we introduced legislation, would the Churches be involved with people who make this decision?

The Ven. Archdeacon: With the medical profession, do you mean?

Mrs Hannan: No. With the patient themselves, with the person that had made the decision.

The Ven. Archdeacon: That is obviously at the discretion of the patient. If a patient wishes us to, we would be.

However, there are many, many times that I have spent with the patients when the issues have been before a patient and then they have not wished to discuss that with me. That is totally, totally their business, and I respect their independence in that

Mrs Hannan: But if somebody made that death decision, do you think the Churches would be - ?

The Ven. Archdeacon: We would not wipe our hands of them; we would care for them, in life and death.

Mrs Hannan: I think that is fine. Thank you.

The Chairman: Thank you. Okay.

The Clerk: Could I just ask about allocation of resources? We have heard Prof. Harris say that we must face

up to the fact - 1 think we all accept it - that resources are scarce. Could you assist the Committee with your views on how the question of allocation of resource should be dealt with when it is a question of prolonging life or hastening death in a particular instance?

Let us say we have an instance where a patient is terminally ill. They are going to die anyway, and it is quite certain they are going to die in six weeks. If they die in one week, it will save resources that can be used to help some other patient. What are your views on that type of situation?

The Ven. Archdeacon: I came in this morning thinking I was a pragmatist, and that a philosopher was an idealist I found almost the reverse as I sat here this morning.

I do not believe that we can actually make law for these financial reasons.

We actually have to look at the principle, and the principle is that we care for all. There are always going to be difficult decisions - some of those decisions will be decided by courts, some of them will be decided by committees or politicians or doctors - and we cannot avoid those, but the principle surely has to be that we care for all to the fullest extent and we try and make - and part of our responsibility, as a society, is to try and make - those resources available for that to happen.

The Clerk: Do you see that translating into an unlimited obligation in society to make resources available to sustain life where possible? An unlimited obligation?

The Ven. Archdeacon: Ideally, yes. But that is in every other area of health and care, as well. I am not saying that that exceeds for children in infancy and so on; what I am saying is that our aim and goal is always to provide the resources to give the fullest care to all our people.

The Clerk: But if, in the real world, it cannot be done, there is a decision to be made.

The Ven. Archdeacon: But that decision then has to be made in the light of the circumstances, not by creating law.

The Clerk: What criteria are to be applied?

The Ven. Archdeacon: Can we come back to another select committee on that one? I think there are major issues- and they are largely political issues - about the criteria that we apply, but I think to dismiss people because they have worked their useful life or come to a stage where they are physically no longer going to be capable is to remove, to my mind, the divine nature of life that we have been granted.

Here I come back to theology, because it believes that is the gift that we have been granted, to have life, and that we have to use it to the full all our life, and if we devalue someone’s life at the very end, in their vulnerable state, then we are going to devalue life throughout.

The Chairman: Thank you. I am conscious of the clock, and you have a pressing engagement.

Archdeacon, could I ask you: how would respecting somebody’s informed consent to make an autonomous decision to end their life at the timing and in the manner



that they choose... As you said, it would close the door for everybody else. How can that be?

The Ven. Archdeacon: I think that if we accede to a person’s request to end their life, then we are, in fact, going to influence other people. It is going act on other people, impinge on other people’s lives to a very great extent, and that is something which seems to me not acceptable.

The Chairman: So, people are entitled to an opinion, they are entitled to voice that opinion, but that is going to be disregarded because -

The Ven. Archdeacon: I think we have discussed the issues to the full with those people.

The C hairm an: But we do not accede to their request?

The Ven. Archdeacon: Not to unnaturally end their life.

The Chairman: Right Prof. Harris gave a very extreme, perhaps, example of the police officer who was in the situation where the lorry was on fire. You heard it described. What would your reaction be if you were in that unhappy position, like the police officer?

The Ven. Archdeacon: I think that we are talking about exceptions, and I think we should be very clear, and I do not believe that you make law or principle on exceptions; I believe we make it on more general principles.

I am very aware of other ‘battlefields’, as I would want to term them, situations where hard decisions have had to be made. It is, in a sense, inescapable that you would try and help the person.

I think it was Mrs Hannan who mentioned: where would the doctor be in that kind of situation? I have known situations where doctors have been in that kind of situation. There have often been alternatives to the gun. There have been some cases - and, obviously, I am not going to look at that one, because I do not know any more about it than we heard - where an injection can be given which allows sleep for that person whilst they continue to work around them. There have been cases where people have been, it seemed, in impossible situations where, in fact, they have been rescued and life has been restored to them, and, I think, until the very end, we have got to work for that end.

The Chairman: I was not quite clear, if you were in that desperate position, what would your action be?

The Ven. Archdeacon: Until I was in that situation, I would not give you an answer to that, because I think one has got to see, in that situation, what the options are. We only heard one option this morning, I am not sure there was only one option.

The Chairman: No. I am just trying to give you the opportunity to offer an opinion if you wish -

The Ven. Archdeacon: I have been in many cul-de-sacs in my life, and that is one I do not wish to go into.

The Chairman: Yes. We have kept you until the last moment. Is there anything that you would like to complete by saying, Archdeacon?

The Ven. Archdeacon: Only that I would emphasise that all my experience, all my faith and knowledge of people, is that if we were to take this step in the Isle of Man, it would be a great error and we would do our people a great disservice.

The Chairman: Thank you. We will have a five-minute ‘comfort break’, as I think the Americans call it.

The Committee adjourned at 12.13 p.m. and resumed at 12.20p jn , when Ms Annetts was called.

Procedural

The Chairman: We welcome Ms Annetts, from the Voluntary Euthanasia Society. I think you have heard evidence today and, with your agreement, we will maintain the same format

Perhaps if we turn to you for an introduction, and then we will have a question and answer session, and then you can summarise if you wish.

I am conscious of the clock, and what 1 would suggest is that we, with your agreement, stop about one o’clock and have a lunch break until two o’clock and then resume, and if you still are in the middle of giving evidence, then- (Interjection) Oh, I beg your pardon, two thirty, so we will go a little bit after one o’clock, then. But either way, when we resume, if you would care to continue with your evidence- are you content with that?

Ms Annetts: Very much so, thank you.

The Chairman: Thank you. Okay. We will hand over to you, then.

EVIDENCE OF MS D ANNETTS Evidence commenced

Ms Annetts: Thank you.I would like to thank you very much for calling me to give

evidence to this very important Committee. I am conscious that this is a very controversial issue that you have decided to examine, and I think it is because it is so controversial that it is important to dig quite deeply into the evidence and to look quite critically at assumption and assertion, so a lot of what I am going to be talking to you about is actually evidence-related, although there are some anecdotes, as well, which I would like to share with you.

Firstly, I have brought with me a briefing for the Committee, together with a copy of the Bill which is currently being considered in the House of Lords, which may be of some assistance to you.

By way of very brief introduction, after leaving university I worked in the Health Service, and I worked with patients who were seriously ill with cancer. I think it was seeing the suffering of these patients, and what not being able to ask

House of Keys Select Committee on Voluntary Euthanasia — Evidence of the Veil. B Partington OBEProcedural

House of Keys Select Committee on Voluntary Euthanasia — Evidence of Ms D Annetts — Evidence commenced


for medical help to die did to them, that really started to make me question why we cannot have a law which offers patients that opportunity.

Following the Health Service, I then retrained as a lawyer and worked in the field of Human Rights and in particular was responsible for taking some of the very first cases under the Disability Discrimination Act in the UK.

I am here today on behalf of the Voluntary Euthanasia Society (VES), which has about 50 members on the Isle of Man. It was started as an organisation in 1935, and its campaign has always been to change the law, so that people who are suffering unbearably from a terminal illness can ask for medical help to die, and I think that voluntary aspect is incredibly important, and we must never lose sight of it

VES was actually founded by doctors and lawyers and ministers of the Church, so I think it is very important to put that in context We, ourselves, see this option very much as within the context of palliative care, and, as Mrs Hannan has already pointed out, ‘euthanasia* actually comes from the Ancient Greek and it means ‘I want a gentle and easy death*; it means nothing about killing at all, and I think most people would want a gentle and easy death.

Interestingly, if you look at what the public position is in relation to assisted dying, you will find that 75 per cent of people on the Isle of Man support a change in the law, and indeed, in the UK, there has been some polling done around religious groupis and it has been found that 83 per cent of Protestants - and this was an NOP poll carried out -and 73 per cent of Catholics favoured a change in the law, and I think there has been a confidential survey of doctors on the Isle of Man, which has shown that over one third of them had received requests for assisted dying. So, this is an issue which doctors confront and the general public confront, and I think I would absolutely accept what the last speaker said, which is that we do not talk about dying enough in our society. We try to put it into a comer, but, of course, it is something that we are all going to have to confront at some stage.

In the VES office, which is based in London, we receive hundreds of letters and e-mails and telephone calls every year from people with a terminal illness who want to know whether they can get medical help to die. 1 just want to read you two very short letters, and I appreciate that they are quite emotional letters, but I think it is important that we realise that there is an emotional aspect to these cases.

*My father has recently been diagnosed with motor neurone disease. He does not wish to become like Diane Pretty. Before that point is reached, he would like to end his life. Is there any advice or information on how to do this? He knows paracetamol overdose is fatal, but this is not a pleasant death. Is it possible to go to Holland? Please give us any advice.’

That is a letter that comes into us, and we see many other letters like that Another letter

'M y dad is dying o f cancer and is starving himself to death. He wants to take his own life and is talking about asphyxiating himself. He asked me not to do anything to prevent him. What can I do? Is there anything I can do to help him end his life with dignity, and without distressing others unnecessarily? Urgent Please help ASAP.’

Of course, Diane Pretty was a particularly well-known person who had a terminal illness, and I had the very great honour of knowing Diane over the last 18 months of her life. She was 40 years old when she contracted motor neurone disease, and when she made her application to the High

Court, she only had a very few months to live. In the words of Judge Stein, who was one of the Law Lords who heard her case, he said,

‘The suffering o f Mrs Pretty is acute, and she is frightened and distressed at her short but bleak future. She is in some physical pain, but more importantly she is in constant dread of the day she will no longer be able to swallow or breathe. She wishes to be spared the suffering and loss o f dignity which is all that is (eft for her. She wishes to control when and how she dies’.

And that was really what Diane was all about. She did not want to have to go through those last few months of her life. She wanted to say when enough was enough and say,41 now want medical help to die. ’ She had had hospice care throughout the last year or 18 months of her life, and that hospice care had been very good, but it did not meet what she wanted Indeed, in that last week, her suffering became extremely acute. She could not breathe, she was suffocating, she was choking, she was in terrible, terrible distress.

I spoke to her husband nearly every single day, and after about three or four days of the most appalling suffering, the medical team decided that the only thing they could do for her was to sedate her So, she was sedated, which means put into an artificial coma, and she died four days later. So, yes, she had a peaceful death, because she was sedated, and I think that is something we must bear in mind: the very real level of distress that this law causes.

The problem with which Diane was faced was that if Brian had helped her to commit suicide, he would have been charged with breaking the law and he could have gone to prison for 14 years. The irony is that if Diane had been bom in Belgium or in Switzerland or in Sweden or Finland or Germany or France, in none of those countries is assisted suicide a crime. Therefore, her husband would have been able to help her to die without fear of prosecution.

In other countries, such as Norway and Denmark, the penalty for assisted suicide is as little as 60 days, so, in England and Wales and in the Isle of Man, we have some of the harshest laws in Europe.

However, that does not stop the fact that medical professionals do help patients to die, and they do so at very great risk to themselves. So, irrespective of what the law may say, patients are asking for help to die and doctors are helping them to die, so what we have is a situation where there is a very real divide between what the law says and what is actually happening in practice, and that is a grave matter of concern, I think, in relation to society and also the doctor-patient relationship.

The effect of these laws which prevent doctors helping their patients die at the patient’s request - and I always come back to the patient - is that patients may try to end their lives by themselves, and this can lead to botched suicides, and, again, we see the results of that in the VES office. Alternatively, patients may go to Dignitas in Switzerland, and I think last weekend there was another reported case of somebody going to Switzerland for an assisted death. So, we cannot shut our eyes to the fact that, even without a change in the law, people are trying to find a way to get them the death that they really want

Both the National Council for Hospice and Specialist Palliative Care Services and Macmillan Cancer Relief, amongst other organisations, have recognised that, even with the very best palliative care, this still does not meet the needs of everybody, and I think that is a very interesting point, that

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced


even the National Council for Hospices says palliative care cannot meet the needs of everybody. Indeed, Jan Jans, who is a leading Catholic theologian who was based in Belgium and is now based in the Netherlands, has said that helping someone to die is sometimes the lesser of two evils from a theological standpoint. So, I think that is another important point to bear in mind.

And the experience of the British Isles is not unique. If you look at Oregon, people who are terminally ill there receive some of the very best hospice care in the whole of the world. It has an extraordinarily high level of hospice provision, with everybody being entitled to hospice care. Everybody can get access to a hospice at the time of need- Having said that, the latest report from Oregon, which was last year, showed that 93 per cent of patients who actually had help to die were in a hospice at the time. So, again, what you see there is a coining together of hospice provision and also including in that the possibility of medical help to die as one of the many options made available to patients.

Indeed, if you go to Oregon you will find that the Oregon health service there has produced a little leaflet which it gives to all of its terminally ill patients, and it talks through to the patients everything that could happen: refusal of treatment, withdrawal of treatment, double effect, terminal sedation, medical help to die - all those are listed as options that the patient should be aware of. So, the patient is fully informed as to what is on offer at the end of life, and I think that is very important.

I am not saying we should prefer one over the other, what I am saying is that full range of options should be available to the patient, with as much information as possible, so they can make the right decision for them, and that is incredibly important.

Looking at the research that has been coming out from Oregon, Dr Linda Ganzini, who is the psychiatrist there, and a leading researcher in the field, has found that the people who ask for help to die are certainly not vulnerable; what they are is people who like their own independence. They like to do it their way. They want control.

But, also, other evidence from Oregon, I think, is very important when people say it will only affect a few people. That is correct inasmuch as only a few people actually go all the way through the process, but an awful lot of people will want the option, and I think that is essential to understand: that a lot of people who are dying want the option, almost as a safety net, as an insurance policy, so if things get too bad, if their pain is too great, if their loss of autonomy is too great, if the indignity is too great, they can ask for medical help to die. Indeed, it has been found that the almost "insurance policy’ aspect of legislation is very important for prolonging life and for taking away some of the fear from that process of suffering and dying, and that is very important.

If we think that, even the Royal College of Physicians found, in 2000, that for 20 per cent of patients experiencing pain in cancer, that pain cannot be relieved adequately, and that is even within palliative care services. So, I do not think that we should think that pain relief can cure everything; it can go so far, but not all the way.

Another point I would just like to pick up on was whether the doctor-patient relationship would be adversely affected. There is absolutely no evidence to suggest this at all. Again, going back to Oregon, what has been found is that where doctors say, ‘I am not going to help you’, that has adversely affected the doctor-patient relationship, but not the other

way around.So, I think we have to be very careful and always go back

to the evidence and have a look at what it actually says.Looking at palliative care, will palliative care be

adversely affected? Again, we have to go to Oregon, to the Netherlands, to Belgium, where there is legislation, and we will find that additional resources have been put into palliative care. I do not think anybody wants patients to take this as the ‘easy route out’, if you like. Everybody wants to see full palliative care, so that the patient can make an informed choice.

Just lastly, touching on the legislation which is before the House of Lords in London, what we have tried to do is take on board the evidence and knowledge from the Netherlands, Oregon and from Belgium and come up with a piece of legislation which will give patients a choice and will protect the vulnerable as well, but will also give doctors some workable guidelines, because at the moment they just do not have them. Doctors are making decisions all the time about withdrawal of treatment, and withdrawal of treatment will lead to that patient’s death in some cases. Following Bland, there have been a whole number of guidelines coming from the GMC and the BMA around withdrawal of treatment so doctors are not left in the dark, and I think it is important we do the same in this area, given that we know doctors will be faced with these requests. So, we must not just leave doctors trying to manage this as best they possibly can.

Lastly, I would like to say to you that the evidence is not there that there is abuse or a slippery slope; the evidence is there that it is helping people at possibly the worst period of their life, when they are suffering unbearably from a terminal illness. What a change in the law might do is just give these people some comfort that if their suffering becomes too unbearable, they can have help to die. In short, the fear of dying has been a little lessened. Thank you.


Mrs Hannan: Where do I start from there? In your experience, do patients entering a hospice consent to all that happens in a hospice?

Ms Annetts: I think it rather depends on whether they are competent or not competent. Obviously, if you are competent, then part of the process for treatment must be that you obtain that patient’s consent, and that is absolutely at the heart of all medical treatment

However, because of the legislation, there is a problem as to whether that consent is always informed consent. I am thinking in particular around double effect, because the patient may well say, ‘My suffering, my pain level, is absolutely unbearable. Help me, Doctor’, and the doctor may well then give them quite high dosages of morphine. Whether there is then a discussion between the doctor and patient as to the fact that that could result in life shortening, I am not always certain that that takes place.

I think that is a problem which results from our legislation. Our legislation stops proper communication and consultation. So, everybody, in a sense, is working slightly in the dark, I think, and I think that is something we need to really address, very much so, because if you are dying, I suspect most people do want to know exactly what is happening to them, so that they can give their consent or withhold their consent whatever it may be.



Mrs Hannan: Would that be a written consent?

Ms Annetts: I do not think it really matters. I think when ' you are having an operation, certainly in the UK, you do have to sign a consent form, and, of course, there are things called living wills, where you can write exacdy what you do consent to and you do not consent to, in terras of treatment

But, often, treatment decisions have to be made in a more informal process and, therefore, there is not anything in writing. Hopefully, there will have been a discussion between doctor and patient, and the patient will have been informed about all the various side effects, and then can make a decision. One would hope that that is happening, because it is part of medical practice. I think it is very important and you, as a trained professional in this area, will fully understand the importance of patient involvement in all medical decisions: Consent must always be at the heart of everything.

Mrs Hannan: But you do not think it is necessarily a written and full, informed consent?

Ms Annetts: In relation to assisted dying, I think it must be, absolutely, yes, and I would say that the legislation we have been working on with Lord Joffe focuses very clearly on identifying that proper, full, informed consent has been ascertained.

There are a number of safeguards which reflect whether consent has been obtained, and indeed, on two occasions, the patient must say, ‘I want help to die’ and on another occasion he must write a declaration saying, ‘I want help to die’ and he must also be seen by a palliative care professional.

So, there is a very formal process to identifying exacdy what the patient wants, because it may be that that patient’s needs can be answered not by medical help to die but perhaps by better pain relief or physiotherapy or something else.

That is the problem with our legislation at the moment; - we cannot have that full communication.

Mrs Hannan: Can I just take you back a step, then? I am just trying, to identify what happens in a hospice, about consent for any treatment that they have in a hospice. In your experience, is it a full, informed consent is it a written consent or is it just an acquiescence?

Ms Annetts: I am not a hospice worker, so you probably need to talk to somebody who works in a hospice. I do not know if there is always that full consultation. The person I knew well, in that situation, was Diane Pretty. I do not know if she was fully consulted about that sedation, and what would happen as a result of that sedation. I do not think she was, but I think the hospice workers knew exactly when she was going to die, as a result of that sedation. I do not know if that is of help.

Mrs Hannan: There was something else. I will come back to it, if I may.

Mr Anderson: Okay. If I could just ask how long ago it was that you worked in the National Health Service?

Ms Annetts: It was some years ago. It was 1983 when I started work, but I regularly -

Mr Anderson: You left work for the National Health Service -

Ms Annetts: In 1985, and since I commenced working for VES, in 2001,1 lecture about once a month to senior and junior doctors, and hear from them their own experiences in relation to end-of-life care.

Mr Anderson: So, is it fair to say - just confirm this for me, if you would, please - that you have never actually worked in a hospice environment?

Ms Annetts: No. I have never worked in a hospice environment.

M r Anderson: We, as a Committee, have already heard evidence about the developments in palliative care, certainly over the last five years, and the effect that has had on people in their last years, and I heard a figure, I think, that you quoted there that there was still a large percentage of people that could not be helped through palliative care. I am just wondering if you could confirm what that figure is, because it does not seem to be the same as the one that has been quoted to us.

Ms Annetts: It was a figure which was established by the Royal College of Physicians’ investigation into palliative caie. They conducted their study in 2000, and their investigation came up with the finding that 20 per cent of patients could not be helped, in terms of pain relief, adequately.

Mr Anderson: So, that was in the year 2000?

Ms Annetts: That was in the year 2000.

Mr Anderson: Okay Thank you.You also quoted some figure about the Isle of Man, and

I am just wondering where you got that figure from. I think you quoted that 75 per cent of people in the Isle of Man propose a change. Would you like to tell us a little bit about that figure?

Ms Annetts: That was a poll which, I think, was carried out by the NOP. It was conducted on the Isle of Man, quite recently, to find out what people felt about a change in the law, and 75 per cent of people felt that there should be a change in the law, so that somebody who was suffering unbearably from an incurable illness could have medical help to die at a time of their choosing.

Mr Anderson: You have touched on a change in the law. Do you believe that legislation should not discriminate against people?

Ms Annetts: I think all legislation has the capacity to discriminate, in a sense, in that at the moment I think you have to be 18 years old in the UK to be able to vote. You could say that is discriminating against the 15-year-old who cannot vote. I think that is one of the jobs of Parliament: to make those distinctions as to who should be permitted certain rights and who should not

I think, as far as possible, we make those distinctions on the basis of evidence, so that we can formulate the best



possible public policy for all of our citizens, and that is why we have Parliament to undertake that role.

M r Anderson: Would you not agree, though, that we do not, at the moment, discriminate in health legislation between different groups of people?

Ms Annetts: We may not discriminate in terms of legislation, but certainly, if you look at the types of healthcare which are available to different communities on the basis of demographics, there is clear discrimination.

M r Anderson: But it is not based on legislation.

Ms Annetts: It is not based on legislation, but it is definitely based on allocation of resources and geography and demographics.

M r Anderson: Just moving on, then, to the scenario of allowing voluntary euthanasia for competent people, do you not think that, in a way, is discriminating against those that cannot take that decision?

Ms Annetts: Absolutely, and I feel perfectly comfortable with that distinction.

At the heart of this decision must be competence. If you do not have competence, then I do not think that person can possibly be given the responsibility and the freedom, if you like, to make a decision.

That is a public policy position and it is based on many different principles. One of them, of course, is the need to be able to protect the vulnerable, and I think - as, I think, everybody else in this particular field thinks - that it is very important that the legislation we come up with promotes autonomy on the one hand, but protects the vulnerable on the other hand.

So, it is a question of finding the right balance. In my mind, the right balance, as far as I am concerned, is that you have to be competent, you have to be an adult and you have to be terminally ill and suffering unbearably, in onier to be able to get over that first hurdle. You may take a different view and say, ‘Well, perhaps non-competent people should go into that grouping as well’, but I would feel uncomfortable with that distinction.

M r Anderson: Would you not agree, though, that there is a very fine line between depression and mental illness?

Ms Annetts: Again, go back to the evidence. I think it is really important, and I say this because I am a lawyer and I cannot help it Lawyers always want to see evidence; that is just the way we are. But if you go back to Oregon and you look at the research which has been done by Dr Ganzini, who is a psychiatrist - and she is not for or against the Oregon law, she is an academic researcher - she has found that the people who go through with the request for medical help to die and are helped to die are not depressed, and what she found was that they had much higher levels of independence and autonomy and control and, if anything, they were less likely to be depressed than people who did not ask for help to die, which I think is a very interesting finding.

M r Anderson: Just going on from that, then, do you believe that doctors sometimes make the wrong diagnosis?

Ms Annetts: Again, it is a question of making sure you have appropriate safeguards in place. There is an irony around the legislation which is proposed in the House of Lords, in that, if somebody makes a request for help to die, they will be attended by possibly four doctors - the attending physician, the independent consultant physician, the palliative care physician and possibly the psychiatrist- before they work their way through the process and have help to die. So, that is a lot of doctors doing a lot of checking, and, indeed, some academics from the Netherlands and Belgium have criticised us for being too weighty in the safeguards. If you look -

Mr Anderson: What safeguards, sorry? Those proposed in the Joffe -

Ms Annetts; Yes, in the Joffe Bill. If you look at what happens in hospitals at the moment, around refusal of treatment and withdrawal of treatment, certainly in the mainland, in the UK, you do not get four doctors going through that process. So, in fact, a withdrawal-of-treatment decision is much more likely to be wrong and based on faulty evidence than somebody asking for help to die and being given help to die.

M r Anderson: Just going a step further, then, do you agree that, if legislation was to come in place, that could, in fact, flavour somebody’s decision? If people thought they were vulnerable, and they have gone through all these steps with all these sets of doctors, or whatever, but because there is legislation and they genuinely thought they were a burden to their families, their carers, even the National Health Service, they might take that decision?

Ms Annetts: I think that is a very important point, to look at burden. Again, if you look at the Netherlands, I have asked doctors who have helped patients to die about this question of burden, and they have said, ‘If somebody says it is because they are a burden, or we have any indication it is because they are a burden, we would not help them.’

Compare and contrast with the UK, where there is no legislation, so there is no checking and there is no transparency and nobody knows what goes on at the end of life, and the person who is terminally ill, suffering unbearably, says to the doctor, ‘I want help to die, and actually 1 think it is because I am a burden’, that doctor may still help that patient to die, and that patient may well die. We have no idea what goes on. We only see sometimes one or two cases come through, but in the vast majority of cases - and we know that one in seven GPs have helped a patient to die - they never come to the surface, which means that the vulnerable are much more at risk in a system where there is no transparency and no regulation, and for me that is one of the most critical reasons why there should be a change in the law.

M r Anderson: Would you not agree, though, that if that was the case and that was one of the reasons people would not be allowed to take that decision, they certainly would not show any signs of that to the medics?

Ms Annetts: I think part of what the doctors - and do not forget there are four doctors involved - are looking at is to find out whether it is a settled response, whether the person is



depressed, whether it is about something else. I do not think doctors are stupid; I think they would find out whether this is something about burden, rather than suffering unbearably from a terminal illness.

And we must always go back to what this is about: as far as the UK proposal is, it is about somebody who is in the last three or four months of their life, dying from cancer, motor neurone disease. Those are the illnesses which tend to generate patients asking for medical help to die.

Mr Anderson: Okay. Thank you.

The Chairman: Ms Annetts, could 1 just ask for your response to comments that we have had from people who have previously given evidence? First of all, in your opinion, does the Netherlands have almost a blind-eye attitude to the application of voluntary euthanasia?

Ms Annetts: Absolutely not. The Dutch, I think, have a very open approach to what happens at the end of life, and I think it was because they were concerned about doctors making decisions where they were not necessarily accountable that made them start looking at end-of-life regulation.

It is important to understand that the change in the law in the Netherlands was not actually about patient choice;, it was about regulation of medical practice, which is something quite different What was found, from the Remmelink reports- and these were reports funded by the Government and undertaken by independent academic researchers - was that in some cases, doctors were making decisions, life-ending decisions, without obtaining the consent of the patient. This is before there was a change in the law. This was during case-law changes.

They found that was happening in 0.8 per cent of deaths, and the Dutch Government was very concerned about this, and wanted to know how they could come up with a process which would make doctors more accountable. That is where the change in the law has come from, and that is why, every five or six years, there is a Remmelink report, funded by the Government, to find out what is happening, in terms of end- of-life decision-making. The Government wanted to reduce that level of end-of-life decisions being made by the doctors rather than the patients.

Interestingly, Belgium, right next door, thought, ‘We should do the same. We should look at what is happening at the end of life and see whether doctors are ending lives without patients’ requests’ - which is a very serious matter, and I do not think anybody would say it is not - and their researcher, Dr Luc Deliens, again an academic, published research in The Lancet in 2000,1 think it was, which found that there were 3.2 per cent of patients dying through doctors ending life without consulting with the patient As soon as that statistic came out, the Belgian Government said, ‘Right We have got to legislate so that the patient can be more involved.’

So, it is interesting. People think this issue is about choice. In fact, where governments have legislated, it has been much more about trying to make doctors accountable and trying to make the whole dying process much more transparent so that the vulnerable are protected.

I am sorry. That is a rather long answer, but I hope it is helpful.

The Chairman: So, I think the context, as we were having it suggested to us, is that there are a great number of deaths in the Netherlands which are contrary to their legislation, and it is almost -

Ms Annetts: No, I do not think, so. Having met senior representatives from the Royal Dutch Medical Association, these are very serious people who have got government funding to put in place a whole process to ensure that doctors who are involved in end*of-life care are properly trained in relation to palliative care, properly counselled, properly understand the different motivations of the patients et cetera, because they understand how important it is to make sure that this whole area is properly regulated and properly transparent. It is not in the least bit cavalier.

I think we are cavalier. I think the UK is cavalier because we have not done any research. We have not got a clue how many doctors are ending patients’ lives without their consent not a clue. I think that is cavalier.

The Chairman: And if we move to Oregon, could I ask you what your response would be to the suggestion that their palliative care system has been devastated as a consequence of the introduction of the Death with Dignity Act?

Ms Annetts: I do not know where that statement has come from. Certainly, from the contacts I have had in Oregon, with the Oregon hospice movement there, they were ambivalent about a change in the law, which one might expect but I understand from some of the senior nurses within the hospice movement there that they are now very supportive of the legislation and for this reason: they were concerned that sometimes in a hospice - and this does happen - patients with a terminal illness killed themselves, and they killed themselves perhaps because the pain relief was not adequate, perhaps because of loss of autonomy, but they ended their lives, it was suicide.

They were very distressed about this, and what they found, as a result of the introduction of this legislation, is that the suicide level has gone down, and that goes back to the legislation being an insurance policy. So, it gives people hope. It gives them the will to continue to live, so that if things get too bad, they can ask for help to die.

So, in fact, the hospice movement has become quite supportive and, as I said before, 93 per cent of patients who receive help to die are in a hospice programme and they have, I think, some of the highest levels of hospice provision in the US.

The Chairman: Just finally, for me, at the moment, could I ask you: what is your reaction to the comments we heard earlier that life is a commodity to be discarded and convenience would take over from care, as a result of introducing this type of legislation?

Ms Annetts: Personally, I think most people regard their life as incredibly precious. We go through life making very serious decisions: who should we marry, should we have children, where will we live, what job will we do? Those are all very important decisions that we do through our lives.

The decision in relation to how we should die, I think, will always be just as important and serious a decision, and I do not see a change in the law having any effect on that It has not had that effect in Switzerland, Oregon, the Netherlands,



Belgium. I do not see why we should be any different

Mr Downie: Just to broaden that last statement that you made, we might wish to choose when we have children, what job we do, where we live, what type of car we buy, but are we in a position yet where we can choose our place and time of death, and how we are assisted to die?

Ms Annetts: We do not choose what illnesses we suffer from. None of us choose that Some of us will be unfortunate and we will contract a life-threatening condition like cancer or motor neurone disease, but during that process we will make decisions as to what treatments we want, and what treatments we will not want, and some of those decisions will have an effect on how long we live. And we can do that now: if you are suffering from cancer, you can decide to refuse chemotherapy, which may have ah adverse effect on how long you live.

So, people are already making those decisions now. People make decisions about refusing treatment, which could lead to the end of their life, and they do that. So, what this is about, I suppose, is saying there will be some people where refusal of treatment if they did that would lead to a very long and agonising death. If you try and starve yourself to death, as I know some people have tried to do with motor neurone disease, it is a very long and agonising death, and they do not want that. They want help to die, and, personally, I think that if we are a humane society, we should try and find a process for giving them that choice, whilst looking after everybody else.

M r Downie: Okay. The Joffe Bill that is currently before the House of Lord’s Committee, I would just like to ask: are you going to be giving evidence to that Committee?

Ms Annetts: I do not know. We will wait to see.

M r Downie: Are you likely to be giving evidence?

Ms Annetts: I might be called, yes.

M r Downie: And then I want to ask you about Dignitas in Switzerland. I take it that that is a service that is not available on the state; it is a paid service and only available for those who have the ability to pay for i t Is that right?

Ms Annetts: 1 am troubled by Dignitas. I am troubled by Dignitas. In Switzerland, like many of those other countries I have mentioned, assisted suicide is perfectly legal. As I said, we are unusual, in that assisted suicide is not legal.

My understanding - and I do not know much about Dignitas - is that you pay £40 or something to become a member and then, I think, you are asked to fill in some forms and then, as and when your time comes, off you go to Dignitas. There is no regulation. There is no transparency. I know people from the UK have gone and have been helped to die.

I find it very troubling that people who are terminally ill are in a situation where they feel they have to join an organisation in Switzerland to get help to die in a small room in Zurich. I question how we can have allowed ourselves to end up in that situation. I do not think it is the right way to go.

M r Downie: Okay. You mentioned earlier on Oregon, and you felt it was a natural progression that, as part of the operation of a hospice, there should be a further facility available for assisted dying, perhaps operated by the people who run the hospice organisation. Could you just broaden that out and...

Ms Annetts: I am not saying hospices should do this at all. What I said is that, from VES’s perspective, we see medical help to die as within a range of options, which you could call palliative care options. It so happens that, in Oregon, the hospice movement has incorporated medical help to die into the range of options that all patients are informed about So, they have taken that particular step.' There may be hospices in the UK which would feel very uncomfortable with that There may be some that feel comfortable. As with doctors and nurses, you will get all kinds of different views.

M r Downie: That brings me onto the next question, which is: the NHS, as you will know, being a former employee in the NHS, contains a varied mixture of cultural, ethnic and religious backgrounds. We know that the question of assisted suicide, or euthanasia, is outwith the principles of the BMA and the Royal College of Nursing. How would you see the progression of the Joffe Bill, based on the situations within the Bill where authority must be given by doctors working within the Health Services? There is a huge dichotomy there.

Ms Annetts: I think consultation and discussion are very important here, and I am in regular discussion with doctors within the Royal College of Physicians and the BMA in relation to this issue, because we cannot go forward without being fully inclusive of everybody who has a role to play, and that is incredibly important.

At the moment, die BMA has said that it does not want to see a change in the law. However, the Chair of the Medical Ethics Committee of the BMA has said that he thinks perhaps the law should be changed. So, again, you do not get uniformity of view within the BMA, and I think doctors are split about 50:50 in the UK.

In the RCN, the RCN has said, ‘We do not want to see a change in the law’, but recently I think it was the Nursing Times who conducted a poll of nurses, and they found that, I think, two out of three nurses wanted to see a change a law. So, as I say, you get differences of opinion. That is why it is so important that there is discussion and consultation.

At the moment with refusal of treatment decisions, if a patient decides to refuse treatment and, as a result of that decision, the patient will die, which is something patients can do, the BMA, the GMC, the RCN et cetera have all issued guidelines about their professionals and their ethical concerns around that Those guidelines say that, if you have a conscience problem with this, you are permitted to opt out and I would see the same exactly happening with this particular proposal.

Mr Downie: If we had legislation in the Isle of Man with an opt-out clause - a tiny hospital in UK terms, everyone known to each other, and, obviously, in my area, if anyone whom I represent is terminally ill, I generally get to know, and 1 try and spend a bit of time with the family or assist the family in some way - would you not agree that it is an area

House of Keys Select Committee on Voluntary Euthanasia — Evidence of Ms D Annetts — Evidence commenced


that is going to cause difficulties for the profession, even in a small area like the Isle of Man?

Ms Annetts: I think it is very right for you to pick up on the distinction or the difference between different countries and different states, and that is why I am not saying you should follow the Joffe proposal at all.

I think if you are going to go down this route, you need to find a distinctive Isle of Man proposal, which is what Oregon did. Oregon is just a very small state in the US, and they have come up with something which is quite limited, but seems to work quite well for them, and I would suggest that perhaps that is something that may be of interest, to look at, say, Oregon and how they work, because that is a very small community there, as well.

M r Downie: But there again we are faced with the problem that we have with the BMA and the RCN, because all of the doctors working on the Isle of Man - and nurses- have affiliation with those two organisations, and if they are not willing participants or they are, as I say, willing participants, they could be struck off.

Ms Annetts: I think if there is a change in the legislation, the professional guidelines will change as well. That will just happen, and it does actually say in the Joffe Bill that this will not prejudice your professional standing within your professional body. So, in a sense, what the Bill does is it directly gives them an exemption provision in their professional guidelines. Do you see what I mean?

M r Downie: What takes precedence, the Joffe Bill or the -

Ms Annetts: The Joffe Bill would take precedence.

M r Downie: Over any rules that the associations may have?

Ms Annetts: Yes, but again you still need to consult and discuss. I think that is really important.

M r Downie: Thank you.

M r Rimington: Actually, I have only got very little in the way of questions, especially as time is moving on. First of all, just in terms of the Joffe Bill and just in comparison with the Netherlands Bill - this is getting a bit legalistic - the Joffe Bill is structured in a very prescriptive manner -

Ms Annetts: Yes, it is.

M r Rimington: ~ and outlines all the conditions and safeguards et cetera in quite a detailed form and has a relatively small section on the monitoring commission, the overviewing body, whereas the Netherlands Bill is the opposite. It sets out general principles of care that must be exercised by the medical profession - there is a relatively short section on that in terms of included safeguards - and then a huge quantity of die legislation is about a monitoring commission and how it is overseen by the state. Do you have any views on what the right balances of how legislation should be...?

Ms Annetts: Yes. It goes back to the previous point I was making about consultation and discussion. I think we felt very strongly that it was not for us to come up with all the fine detail around a monitoring commission, because this legislation is going to need input, from the medical professionals in particular, in how we go about monitoring.

So, one of the things we have been talking to doctors about is, ‘What would you like to see? How would you like the monitoring to work?1 and that can all be contained in a separate set of regulations, which is how the UK legislation would work. So, you would have a set of regulations to go alongside the Bill, following discussion with all the key professional bodies, to set up an appropriate monitoring commission.

M r Rimington: What about the view - and I am just playing devil’s advocate here, I am not sure myself - that if, say, legislation was to come forward in the Isle of Man, the detailed prescription that you have got in the Bill in terms of safeguards would be better replaced by general principles, or less detail, and that the detail is in regulation on thé grounds- and I can think of the counter-arguments - that you are not going to get it right first time and you are entering into a new field? If the detail is in primary law, then it is difficult to unravel. If the detail is in regulations, then it is easier.

Ms Annetts: I certainly see that argument. I think this is the second draft that we have put forward to the House of Lords and, following the first draft last year, we had a lot of discussion with senior palliative care doctors, in particular, about their concerns. It was as a result of their concerns that we built in yet more stringency in terms of safeguards and put in, in particular, something called the palliative care filter. So, the complexity is as a result of consultation.

It may be that that is just not the right way forward for the Isle of Man, and I think that would be highly appropriate, I think everybody has to find their own answer to this particular issue and the right thing for your particular culture.

Mr Rimington: Lastly, a lot of focus has been placed on the Remmelink reports and they have been used by many parties to say, ‘This illustrates all the bad things that we consider about euthanasia. ’ I know that the Remmelink reports were all done prior to legislation in the Netherlands coming in. Do you expect to see change since the legislation has come in?

Ms Annetts: I think the Dutch are working very hard to make sure that doctors fully understand the legislation and their obligations. 1 think I would be surprised to see the numbers of people using the legislation changing. I think it probably will stay at where it is.

I think the incidence of reporting may well continue to increase. I think the levels of non-voluntary euthanasia will continue to go down. So, I think there will be the odd little shift, but I think that is not because of the legislation; I think that is because the Dutch doctors have taken it upon themselves to do a lot of training and education and to learn and to continue that process of learning.

Mrs Hannan: Could I just ask: in the Joffe legislation, there is a ‘qualifying patient’ term, which means a patient who has reached the age of maturity and who has been



resident in Great Britain for not less than 12 months at the date, so obviously there is some way of stopping ‘tourism’ for this sort of requirement Is 12 months deemed to be long enough?

Ms Annetts: In Oregon, it is six months, and in the Netherlands their provision is a ‘settled relationship’ with their family doctor, rather than a residence provision. So, again, I think it is a question of finding what is right for you.I think, given that 'terminal illness’ in this definition means that the person is facing death within three to four months, that makes the residence provision of 12 months okay. I think that seemed to be a comfortable compromise, given all those other definitions of residence.

The Chairman: Could I just finish? We have plodded on, and I hope we have covered things, but maybe we could ask if we could take a lunch break to have a chance to go through your evidence, and maybe at 2.30 p.m., if anyone wishes to recall you, if you could be available if that would be... (Ms Annetts: Yes.) Thank you.

Picking up on some of the questions my colleague, Mr Downie, mentioned, could you tell us if there have been any doctors or nurses who have been struck off professional registers for acting within the law in other jurisdictions with regard to this issue?

Ms Annetts: This gets into a very complex area. You are talking about the legislation permitted them to help somebody to die (The Chairman: Yes.) but the professional regulations said no? (The Chairman: Yes.)

The Swiss are currently changing their professional regulations, so that doctors can be more involved in relation to helping to die. Going back to Switzerland, their provision is that assisted suicide is legal provided you do not financially benefit So, the Swiss doctors are looking at broadening their professional regulations to take account of their law.

In Germany, where assisted suicide is legal, doctors have been known to be on public record saying, ‘I have helped somebody to die.’ They have not been struck off, even though it is against their professional rules of conduct In one instance, he was demoted - one doctor, I know, was demoted- but he was not removed from the professional roll.

The Chairman: Just to extend that, if a Dutch doctor is practising and he or she engages in assisting a patient to die, which is lawful in that jurisdiction, would they then find that they would not be allowed to practise in the UK afterwards?

Ms Annetts: I do not actually know the answer to that 1 think if a Dutch doctor comes over to the UK and starts practising in the UK, he would have to comply with our law. I think that is the basic point.

The Chairman: A nurse or a doctor who has practised in Holland, engaged in this practice, who then came to England, would not automatically face a block -

Ms Annetts: Absolutely not and I know of people who ... I am not sure if I know of doctors, but, certainly, of Dutch nurses who have worked in the UK, having worked in the Netherlands, and I do not think that there is any problem there. Indeed, from what I have seen of the Dutch medical

system, it is incredibly good. It is very, very good indeed.

The Chairman: We do not have any more questions. Shall we hand over to you, if you would like to summarise or conclude?

Ms Annetts: No. I think I have probably spoken far too much, anyway I have nothing further to say.

The Chairman: Perhaps, then, at 2.30 p.m. we could see if there are any other issues, but otherwise, thank you very much for taking the time to come.

Ms Annetts: Thank you.

The Chairman: We will adjourn now until 2.30 p.m.

The Committee adjourned at 1.25 pm . and resumed its sitting at 2 JO p.m.

EVIDENCE OF MS D ANNETTS Evidence concluded

The Chairman: We have had a technical difficulty at the very outset What I think we will do, Ms Annetts, if you will agree, is to start afresh.

Ms Annetts: That is fine.

The Chairman: As I was explaining, just to make the Hansard, Ms Annetts, from the Voluntary Euthanasia Society, has given us some information and the opportunity to recall her. So, thank you for that Mrs Hannan.

Mrs Hannan: Thank you very much.Maybe I could ask a question in relation to a recent article

in the British Medical Journal entitled ‘Assisted Suicide* by Richard Huxtable, a lecturer in medical law and ethics at the Centre for Ethics in Medicine, University of Bristol. He comments about the Voluntary Euthanasia Society and its change of name from Exit back to the Voluntary Euthanasia Society, so I wonder if you could just cover those issues, please.

Ms Annetts: Right, okay. As I mentioned previously, before lunch, the Voluntary Euthanasia Society was set up in 1935 by doctors, lawyers and ministers of the Church. In the early 1980s, it decided that it wanted a snappier name and went for Exit and I think it was Exit for about two years, and then it went back to the Voluntary Euthanasia Society.

One thing I would just like to go on and explain: I have been Chief Executive of VES, now, for over three years, and it has become clear to me that our name does not actually say what we do. What we do is we support patient choice at the end of life, whatever that may be. So, we would be supportive of a patient who wanted to have life-sustaining treatment in the same way that we would be supportive of a patient who wanted to refuse treatment We are just supportive of that patient’s choice at the end of life, and we are probably the leading supplier of living wills and advance directives in the UK. So, because of that, our name does not really say what we do, and we are thinking about having another look

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence commenced House of Keys Select Committee on Voluntary Euthanasia - Evidence of Ms D Annetts - Evidence concluded


at our name and whether we could come up with something which better represents what we do, which is basically about patient advocacy.

Mrs Hannan: Yes, I think that is...

The Chairman: David?

Mr Anderson: Just one thing from this morning: you quoted that doctors in the UK are currently split 50:50 about a change in the legislation. That is contrary to the figures that we have received, that it was 3:1.

Ms Annetts: I think the BMA had a vote at their conference in 2002 and it was split 50:50 there, and there have been a number of polls carried out amongst the medical professions. I think there was one by Medics last year and it came out at about 50 per cent for, 50 per cent against

So, I think there is lots and lots of data out there. I think the one thing that is clear is that doctors do want to be involved in the process and do want to be consulted, so it is important we listen to what they say.

Mr Anderson: Thank you.

The Chairman: Could I just ask one question, Miss Annetts? Does the Voluntary Euthanasia Society have members who also practise different religious faiths?

Ms Annetts: Absolutely. I am always amazed by the breadth of religions represented within the VES. We have practising Methodists, Unitarians, Quakers, Catholics, Muslims, Jews, C of E, as well as Humanists. So, we have everybody.

The Chairm an: Thank you very much for your evidence.

Ms Annetts: Thank you.

Dr Harris was called at 239 p.m.

Procedural

The Chairman: We will turn to Dr Ben Harris on behalf of the Isle of Man Medical Society.

Dr Harris, thank you. If I just introduce everybody, it may be that you know us all, but to my left, Mr Rimington, Mr Downie, myself Quin tin Gill, Mr Anderson and Mrs Hannan - we are all Members of the House of Keys - and at the far end of the table is Mrs Cullen, who is one of the Clerks to the Committee.

If I could just remind myself as much as anybody that we are being recorded for Hansard, so if we have any indication from the Hansard officer that he is having difficulty in hearing what we are saying, I will perhaps indicate to us to speak up or a bit more clearly. Okay? Thank you.

The form that we have adopted throughout this is to invite you to give an introduction, then a question and answer session and then if you would like to conclude with a summary, if that is okay.

Dr Harris: Thank you very much.

The Chairman: I turn over to you.

EVIDENCE OF DR B HARRIS

Dr Harris; I am Dr Ben Harris. I would first like to thank the Select Committee for giving me the opportunity of contributing to the investigation into voluntary euthanasia in ray capacity as representative of the Isle of Man Medical Society.

I have been Medical Director, for the last 10 years, of St Bridget’s Hospice, but I am not here today representing the Hospice. That role will be fulfilled by Mr John Quinn, the Hospice Chairman, in due course, I understand.

In preparation for speaking to you today, I sent a questionnaire earlier this month to the 148 doctors of the Isle of Man Medical Society to assess their views on voluntary euthanasia. There were 85 replies, which is 57 per cent of them. The highest response rate was amongst GPs, at 69 per cent. In this statement, I will report the findings of the survey and include additional comments that the doctors made.

The HippOCTatic oath was written 2,500 years ago and states:

'I will use my power to help the sick to the best o f my ability and judgement I will abstain from harming or wronging any man by it. I will not give a fatal draught to anyone if I am asked, nor will I suggest any such thing.’

The British Medical Association is the modern voice of British doctors on ethical issues. The BMA has consistently opposed voluntary euthanasia and physician-assisted suicide. This view has been repeatedly confirmed by annual meetings.

In the year 2000, the BMA held a two-day conference to promote the development of consensus on physician- assisted suicide. Overwhelmingly, BMA members from a wide range of moral viewpoints agreed that they could not recommend a change in the law to allow voluntary euthanasia and physician-assisted suicide. In the survey I conducted for this hearing, 75 percent of Manx doctors agreed or strongly agreed with the BMA view, compared with 19 per cent against. This rose to an 85 per cent agreement from GPs, with only 9 per cent against Examples of their comments included:

‘This is outside all ethical and moral beliefs that are central to my practice of medicine. I would not be prepared to take part in euthanasia or physician-assisted suicide in any way whatsoever.'

Another doctor wrote:

‘At the present time, I cannot foresee any circumstances when I would be reconciled to assisting in terminating life.’

Another stated:

‘After nearly 70 years of total interest, experience and practice o f medicine, I am certain that 1 totally agree with the BMA views.’

The Royal College of Physicians remains firmly opposed to the legalisation of voluntary euthanasia, as do all national and international associations of doctors in palliative care and

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House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B Harris


care of the elderly. The role of doctors has always been to cure and care, but never to intentionally kill their patients. The legalisation of voluntary euthanasia would fundamentally change the role of the doctor and the relationship of trust between the doctor and the patient

You need to be aware that the passage of this Bill will change the face of medicine and a doctor’s duty to care. It is a serious and disturbing development in the authority of medicine, and changes active killing as a fundamental harm to a potential benefit in clinical codes of conduct

The greatest fear with this proposed legislation, according to Manx doctors, is that, while lawmakers may believe they are simply giving people a choice to die, in practice they may be establishing a duty to die. They may, in fact, cause increased suffering to the very group they are trying to help, by actually making them feel selfish to live out their natural life. I work almost exclusively with people who have a serious and progressive physical illness. Many of them are acutely aware that they need care and support from their family, friends and health carers. They know that those they love have to make adjustments in their own lives to fit around the illness, and they feel guilty. Most have had to give up their own jobs and can no longer help others as they did before.

Not surprisingly, they feel they are a burden on those around them. No amount of protestations to the contrary will entirely remove this feeling. It would be cruel for a society to further saddle these vulnerable people with pressure to opt for euthanasia, not because they want it for themselves, but simply to relieve the burden on others. A GP wrote:

‘I am concerned that some very ill people may feel under some obligation to their relatives and carers to seek euthanasia in a way to ease their responsibilities.’

Unless you can confidently predict that overall suffering in this group will be reduced, then changing the law cannot be justified.

The people of the Isle of Man have generously supported the development of palliative care services to the point where they are as good as, if not better than, you would find ̂anywhere in the British Isles. A comprehensive service exists that works harmoniously with the hospitals and the primary healthcare teams. Patients are referred early in their diseases, often shortly after diagnosis. Over 95 per cent of patients with serious cancers are referred to palliative care services. There are no waiting lists for any palliative care service, and it is entirely free at the point of delivery.

Palliative care improves the quality of life of patients and families who face life-threatening illness by providing pain and symptom relief, spiritual and psychosocial support, from diagnosis to the end of life and bereavement Palliative care respects, affirms and empowers people with serious medical conditions. What palliative care says to people is: ‘Okay, you have got this condition. There is a whole range of services available to help you, should you need them. You may or may not get troublesome symptoms in the future. At times the going may be hard, but whatever happens we will be there with you. You will get through i t We will help you and your family cope and achieve what it is you want to do with the time that remains and allow you to live your life to the full, right up until the moment when your life naturally comes to an end.’

This is what currently happens on the Isle of Man, a

situation of which we can all be proud. Seventy-four per cent of doctors on the Island see no need for a change in the law on euthanasia. Seventy per cent have not been asked to provide euthanasia even once in the last five years of their practice. Eighteen per cent of doctors report being asked for euthanasia on one or two occasions in the last five years, 4 per cent report being asked three to five times, 7 per cent being asked six to 10 times and one doctor reports being asked more than 10 times. One doctor wrote:

'I feel that the arguments for euthanasia have become outdated since the introduction and growth of a superb hospice movement, especially here in the isle o f Man.’


‘We already have facilities to ensure death with dignity in the community, hospital and Hospice.'

Another wrote:

‘The hospice service allows death with dignity.’

Patients with terminal and serious progressive and physical illness often have at their fingertips large quantities of prescribed medication. If there was such a desire on their part to end their life at the time of their choosing, one might have expected at least some of them to have tried to commit suicide by taking an overdose of their prescribed medication. In reality, I do not know of even one case where this has happened on the Isle of Man in the last 10 years.

No doubt lawmakers would establish a comprehensive assessment process to decide which patients would be allowed euthanasia. However, any medical phrase such as *a terminal or a serious and progressive physical illness1 will always be open to interpretation. In response to this issue, 67 per cent of doctors agreed or strongly agreed that it would be difficult to decide which conditions met this criteria and which did not

Over time, agreement for voluntary euthanasia for advanced cancers runs the risk of becoming agreement for less severe clinical situations such as early cancers, multiple sclerosis, Parkinson’s disease, dementia, rheumatoid arthritis, emphysema, mental debility and possibly, eventually, just old age. This could be legislation that will ultimately permit actions different from its original purpose.

A doctor commented:

‘The trouble is that many people have an interest in the demise of old and difficult patients, including the state. In practice, legislation o f this kind would open the way to large-scale elimination o f inconvenient human beings.’


‘Pressure would lead this to be open to abuse and extension o f what is terminal and serious progressive and physical illness.’

Another wrote:

‘No matter how carefully constructed or worded, any legislation introduced and enacted would be open to abuse.’

A minority of doctors expressed support for the legalisation of voluntary euthanasia, although only 17 per cent saw a need for a change in the legislation. Comments

House of Keys Select Committee on Voluntary Euthanasia - Evidence of D rB Harris


expressed included:

‘My personal view would be that euthanasia should be allowed under strict guidelines.’

Another said:

‘After 65 years, I have seen so many patients plead to be helped to end the misery I would act by the will o f the majority.’

Another said:

'I would support physician-assisted suicide after there had been full discussion and counselling and two medical opinions. I strongly believe in the dignity o f death.’

Advocates of voluntary euthanasia believe that the individual’s right to choose takes precedence over other considerations, but choices are not made in a vacuum. Freedom to choose is always balanced by responsibilities, because our choices and decisions have an effect on other people. Should the wishes of a few undermine the security of many?

Much is made of choosing to die as an alternative to suffering intractable pain and indignity in the final stages of life, but there is no certainty that people with terminal and serious progressive and physical illness will get intractable pain or indignity before death. Indeed, on the Isle of Man, it is unlikely that they will experience either. A person’s last days can be their most fruitful, a time of acceptance, serenity and meaningful conversation with loved ones. One doctor wrote:

*1 feel that the pro-cuthanasia lobby prey on the fears o f vulnerable people who already have a devastating diagnosis and are feeing an unknown future. The implication is that they may have a painful and undignified death. The reality that I have witnessed and been part of is that their symptoms can be alleviated, their fears addressed, and they can then spend precious quality time at the end o f their lives with their loved ones. Their deaths are dignified already.'

The MORI poll, the Border TV poll and the postcard campaign may suggest public support for the concept of voluntary euthanasia on the Isle of Man. However, with any poll, how questions are asked is vital. All too often the question asked has been along the lines of *Do you think terminally ill patients with unrelenting pain and suffering should be allowed to die at their own request?’ When put in this misleading way, it is not surprising that some support it, especially when it is viewed as some kind of abstract concept involving someone else. If, for instance, the question had been put as ‘Would you support euthanasia, even if it risked placing a duty to die on the most vulnerable?* then a different answer might have been obtained. In addition, surveys like these tend to attract a biased sample of responders. Those who support the status quo tend to be less interested. If you were to suggest a Manx referendum on this issue, the as yet silent majority, after hearing the arguments, may well vote against the legalisation of voluntary euthanasia.

Although euthanasia has been effectively legalised in Holland since 1984 and in Belgium since 2002 and physician-assisted suicide has been legal in Switzerland since 2001 and in the US state of Oregon since 1997, both acts remain illegal in the vast majority of the world. All major belief systems in the world oppose euthanasia. In Australia, where the authorities of the Northern Territory legalised

euthanasia in 1995, it was subsequently overturned by the federal government in 1997. France and Germany remain strongly opposed to euthanasia, possibly in reaction to the slippeiy-slope phenomenon brutally demonstrated under the Na2i regime of the 1930s, which started with the forcible sterilisation of those with hereditary disease, moved on to the killing of those with severe handicaps and ended with the state-sponsored killing of Jews, the elderly and vagrants.

In Holland in 1995, according to the report by the Remmelink Commission, there were 3,200 reported deaths by voluntary euthanasia from 9,700 requests. Nine hundred of these deaths were not requested by the person who was subsequently killed. These numbers may indeed be an underestimate, since not all cases are reported. With a population of 14.5 million in Holland, this is a rate of one death per 4,500. If the Isle of Man had similar levels of uptake, there would be 16 euthanasia deaths per year on the Isle of Man, of which four would not have been requested by the person being killed. A doctor wrote:

‘I have never been asked by a patient to assist their suicide. I have been asked several times by relatives to accelerate death o f patients whom they considered to be beyond help.’

Several reports from Holland in the 1990s have shown the problems that can occur with the practice of euthanasia. Most euthanasia is carried out by GPs working in isolation with no access to palliative care. Some patients are clinically depressed at the time of euthanasia. Some are simply terrified for their future. Countries like Holland, where euthanasia is practised, have poorly developed palliative care facilities compared with the Isle of Man. Dutch medical schools spent more time teaching about techniques of and the process of euthanasia than they did about palliative care, so it is of no surprise that doctors would feel more comfortable offering euthanasia than the relief of symptoms.

The overwhelming majority of the 500 or so research papers relating to the effects of euthanasia in Holland, Belgium, Switzerland and Oregon highlight the pitfalls of legalising euthanasia. Policing proves to be very difficult, especially with restrictions in disclosure implied by clinical confidentiality. Although there appears to be abuse of the system, few prosecutions are successful. There have been tens of thousands of premature deaths in these jurisdictions, but whether the overall suffering in these communities has reduced is very unclear. The verdict on voluntary euthanasia is at best inconclusive.

The vast majority of doctors practising in the Isle of Man oppose the legalisation of voluntary euthanasia. Examples of comments expressed were:

‘I would prefer to up and leave the Isle o f Man and practise elsewhere than to be a party to such legislation.’


‘1 would find it morally and ethically wrong to end a person’s life by active intervention and would refuse to the extent of ending up in prison.’

Another wrote:

‘Euthanasia diminishes the whole community. Legalising it, far from empowering the terminally ill, threatens them and judges their lives not worth living.’



Eighty-five per cent of working doctors said they would not be prepared to assess patients for euthanasia nor directly provide it themselves, even if it was to become legalised. A doctor wrote:

‘This is a social and political issue, not a medical one. Those who seekto mcdicalise it do so in an attempt to sanitise it*

The arguments for voluntary euthanasia, in the view of most doctors of the Isle of Man, are far outweighed by arguments against. Most doctors believe that euthanasia is ethically wrong. If it were to be legalised, that would not change its ethical status for most doctors. Voluntary euthanasia is contrary to the fundamental, practices of medicine, and Manx doctors, on the whole, want no part of it

Thank you.

The Chairman: Could I just ask a couple of points on that, Dr Harris? First of all, would you be in a position to allow the Committee to have details of the survey that you presented? (Dr Harris: Yes.) The full details arid all the responses, not just examples?

Dr Harris: That would be fine. I always intended to write it up to circulate back to the members of the Society, so if I gave you a copy of that, that would be fine.

The Chairman: Thank you.Before I turn to my colleagues, can I ask you: is the

presentation you have just read to us solely your own interpretation or have you agreed that with any of your colleagues?

Dr Harris: No. That is my representation to you.

The Chairman: Right So, the examples that you have cited are ones that you have felt would be helpful?

Dr Harris: Yes, to illustrate the points.

The Chairman: Yes, okay. I will turn to my colleagues. Mr Rimington.

. MrRimington: Thank you. Yes. In the presentation you gave, with regard to the 25 per cent of doctors who were not opposed to the concept do you think you gave them representation in your address?

Dr Harris: Yes, I think I did. You need to be aware that, for instance, the BMA, which is the collective voice of British doctors, has a clear view. As I pointed out, the other national and international associations agree with that The vast majority of Manx doctors agree with those views, so I feel justified in the statement that I have given.

Mr Rimington: Right, okay. The interpretation of balance there may be... You said that if legislation did come in here or elsewhere that as with other legislation in relation to abortion, there would be no compulsion whatsoever on any medical practitioner or nurse in law.

Dr Harris: I think that would be good practice, wouldn’t it? It would be very difficult for you to force doctors to take

part in something they consider to be -

M r Rimington: Have you seen any desire of any party to do that? (Dr Harris: No.) No? Thank you.

You mentioned the Remmelink report which has been mentioned by virtually everybody we have spoken to and many of those who have written in, and it has been used to substantiate their views -

Dr Harris: For both sides of the argument

M r Rimington: - for many sides of the argument So, we might accept that it is hard for us to say, ‘Ah, here is an interpretation, and this is hard and fast.’ If I can put the point of view to you that of the number of deaths that were highlighted in the two Remmelink reports in the earlier mid-1990s, the number of deaths that were described as involuntary, i.e. the patient had not requested i t actually compared favourably as a percentage to those countries that did not have the at that point established practice of voluntary euthanasia, noting that at that time it was not in law, it was accepted that it could take place under case law, wasn’t it?

Dr Harris: So, it had not got worse, you mean, since the legislation?

M r Rimington: Voluntary euthanasia was allowed, as I understand i t in the Netherlands on the basis of case law and precedence and legal interpretation rather than under legislation as such, until recently. (Dr Harris: Yes.) And the argument that has been put forward - and statistically - is that the involuntary deaths highlighted in the Remmelink report, as a percentage, were smaller in number than countries where similar reports had taken place which did not allow voluntary euthanasia, the argument being that having some form of legal control, admittedly under case law, allowing euthanasia to take place actually reduced the number of involuntary deaths compared to countries where it was not allowed at all.

Dr Harris: But surely if there was one, that would be one too many? (Mr Rimington: Agreed.) I am not aware of one on the Isle of Man at the moment

M r Rimington: No. But then there has not been that same survey.

Dr Harris: It might not be better than other places, but is it a position we want to aspire to?

M r Rimington: No, but we are a very small population, so it would be difficult to do a representative survey. But can you comment on that apparent finding, that the involuntary deaths were actually less in the Netherlands?

Dr Harris: I think I just have, haven’t I?

Mr Rimington: Would it not support the argument that it is good to have fewer voluntary deaths and that they take place anyhow and, in fact, if you have legislation, then there are less of those deaths, because you have a more controlled environment?

Dr Harris: I can see the point you are trying to make,



although since we currently have none on the Isle of Man, I would take small comfort from the point you are trying to make, really.

M r Rimington: Can I suggest to you first of all- you mentioned the last days: would it not be possible for somebody who had decided to go down that particular pathway of voluntary euthanasia to achieve the same serenity and come to terms with the family in their last stage of life, in a controlled circumstance, when possibly in the last days of some people’s lives they do not have that opportunity, whether it is pain relief or whatever they are suffering from that denies them that opportunity?

Dr Harris: Yes. I do take that point All one could say is that they would not be their real last days; they would be contrived last days. But there is no reason why effective communication could not take place in the lead-up to such an event.

Mr Rimington: You gave us the comparison - which we have had before - with Nazi Germany. Do you think that is a fair comparison to make for the Isle of Man?

Dr Harris: It may be why the Germans feel as they do about the issue. It just illustrates a slippery slope at work, doesn’t it? I would absolutely hate to think that it might happen here.

M r Rimington: The Germans, I think we would agree, at that time were on a very wide slippery slope in many, many areas of their activities. Would that be a fair comment?

Dr Harris: If the brutality of it has offended you, I apologise, Mr Rimington.

M r Rimington: You have used the term ‘vulnerable’ on many occasions, and, again, if I could say that those who oppose the concept of change in the legislation invariably use this term ‘vulnerable*. You put a slightly different twist on it this time, because not only if the legislation was in place could it potentially affect the vulnerable, but you have now stated that the proponents of voluntary euthanasia are preying on the vulnerable. How can they be preying on the vulnerable?

Dr Harris: I think that what they are preying on are the fears of a vulnerable group. Sometimes it is the assumption that terrible things might happen to patients when, in fact, those terrible things might not happen, and so it is the fear of the unknown. Folk who are not particularly involved in it have their own fears of what illness might be like, as lay people, so it is the fear side of it, really, that is the concern.

Mr Rimington: A lot of reference has been made to Oregon, where the legislation is in place and there is an active and quite good hospice movement as well. I understand that physician-assisted suicide is a part o f-b u t having said that a very minor part of - the care and end-of-life choices that take place within the hospice movement in Oregon, and there appears to be no conflict Do you agree with that?

Dr Harris: I am not sure. I am sure that if that is

something that you have read, that must be the case. I think hospices vary a lot around the world. I am not sure that in Oregon they have quite the same set-up as we do on the Isle of Man. I would not like to comment on quite how their hospice services work.

I think one point to reiterate here - I think it is very important - is that even around the UK, which was the first to develop hospice services and whose are the most developed, there really is nowhere else where such a high percentage of their patients with these diseases access palliative care services. We really are unique in that because of the way the Hospice has developed and it has been very well funded by the community. We are in a very fortunate position. It does mean that you can say that all patients have access to those services.

M r Rimington: Would that not then imply that as we have such good services...? And I think we would all like to support those good services. I do not think there is any - certainly, from my own personal point of view- contradiction between the two. Is there any reason why those.that I would think would be very few people who might wish to go down that particular pathway would not enhance the hospice service and not stand in contradiction to it?

Dr Harris: I think there is always a danger, though, that the wishes of a few may have a negative effect on the whole community. That would be the concern, really. If you imply that if a few people had euthanasia, there would be fewer patients to look after and therefore the services would be better, if that is the point you were making, it is -

M r Rimington: No. The numbers are so small that financial resources or resources are not an issue.

Dr Harris: No. Hospice services would continue regardless of what happens in legislation, because clearly- and I am sure you would all agree - we would want to be in a position to actually offer that choice. We would never want euthanasia to become almost a Hobson’s choice for people, where that was the only choice they had.

M r Rimington: Yes. I could ask a lot more. My colleague...

Dr Harris: Thank you.

Mr Downie: Right Dr Harris. I wonder if it is possible for you to give us an idea of how many patients are annually treated in Hospice, and also just explain the role and about how many patients are treated by the Macmillan nurses.

Dr Harris: Yes. We get referred to us at Hospice each year about 250 patients. Of those, probably 150 would have a great deal of input from the Macmillan nurses.

Mr Downie: So, in an average week in the Isle of Man, you would have about how many people in your charge, with what you have got in Hospice and what is out in the community with Macmillan nurses?

Dr Harris: The Hospice unit can take a maximum of 10 patients, but our caseload - that is the number of people that we are involved with - is currently running at towards



350. Numerically, most of the work is being done outside the building.

M r Downier So, as we speak, it would be fair to say there is an average of 300 to 350 people receiving attention by your organisation?

Dr Harris: Yes, that is true.

M r Downie: Right, okay. Given that there has been an improvement in palliative care in recent years, is there anything you feel that you cannot deal with in your bid to prevent suffering?

Dr Harris: One area that we are trying to develop into is the care of children. We sometimes have to make use of facilities off the Island. With certain things, it is not practical to provide them on the Island, so people have to be flown across to Liverpool for various things.

M r Downie: So that is to a specialist children’s hospice, then, is it?

Dr Harris: Yes, but adults, for instance, have to go over to Clatterbridge for radiotherapy and certain other treatments. We cannot provide those on the Isle of Man.

Mr Downie: Right If a child, for instance, was diagnosed with a terminal illness and it was obvious that there was not much hope, that child would probably stay in the Isle of Man, would it, or would it go away?

Dr Harris: Yes, the child would stay in the Isle of Man, and care would be provided in the home as much as possible and, of course', in the excellent children’s ward. But we do not currently have a facility for in-patient hospice for children.

M r Downie: You can answer this question if you want but have you ever been involved in a case where you felt that the patient could have perhaps benefited from being allowed to be put out of their misery?

Dr Harris: No, I have never felt that. As the doctor mentioned here, sometimes relatives have said, ‘Wouldn’t it be kinder?* or ‘Isn't there anything that could speed up the process?* but I am always at pains to point out that we allow nature to take its course and any medication we give is simply to allow that person a peaceful and dignified end, an end free of pain and free of breathlessness.

Mr Downie: Yes. I do not know if you are aware of the Diane Pretty case in the UK. It did have a lot of media coverage. (Dr Harris: Yes.) There were also issues before the courts and... It has become obvious that during the last week of her life, because of her problems with motor neurone disease - it was affecting her throat and her respiratory organs- she had to be kept in a state of unconsciousness for a week prior to her passing away. A difficult question, perhaps, for you to answer again, but under some circumstances do you think perhaps some of your colleagues, if perhaps not yourself, may feel there would be justification in certain very difficult cases like that and it would be possible to bring her life to an end quite quickly?

Dr Harris: Well, certainly from the survey, the majority did not express opinions in that direction, although a minority did. You used the word ‘kept’ in a state of unconsciousness. Certainly, some patients are in a state of unconsciousness for the period before they die. That happens sometimes, but it is not that they are being kept in that state. They are unconscious because they are very weak; their brain is not working effectively well enough to actually keep them conscious.

M r Downie: So, it is not the medication that brings it about, then?

Dr Harris: No. In some cases, we have patients who have no medication given to them and yet are unconscious because they are very weak, and they might die the next day. It is the underlying condition that is progressing.

Mr Downie: We have also heard that in America, for instance, as part of their hospice programmes in Oregon, they offer a facility now where, for a patient who has perhaps undergone some particular severe illness and has been a patient in the hospice for a while, there is an option there for them to opt out and go for a euthanasia-type approach. I take it that as we have not had an opportunity to speak to anyone else from the Hospice organisation on the Island, that would be a total no-no as far as you are concerned?

Dr Harris: Certainly from my position as a doctor, there have been recent surveys of palliative care doctors and there is a unanimous opposition to involvement in euthanasia. And I understand that palliative care nurses feel just as strongly about it. You will have to ask Mr Quinn, our Chairman.

Mr Downie: Right okay. Thank you. We will ask him at the appropriate time.

Mr Anderson: Dr Harris, this morning we have heard from somebody that had worked in the NHS nearly 20 years ago about the concern that person had had with the pain relief of terminally ill patients and how this obviously flavoured that person’s opinion on this subject Can you tell us how pain relief to the terminally ill has developed over the 10 years that you have been working in the Hospice and what percentage of patients cannot get relief from pain as a result of the treatment that you give?

Dr Harris: Yes, thank you.Skills in managing pain have developed an awful lot,

really, in the past 10 or 20 years, I suppose. There have been a number of reasons for that. One of the biggest reasons, really, is that the drug companies have actually come up with a whole variety of products which can be used in different circumstances. So, whereas perhaps 20 years ago there would only be one medication that could be given in a certain way, now our management plans for pain control are very much tailored to the individual patient, depending on their special circumstances.

Of course, I would not like you to get the impression that pain relief is just about medication. The perception of pain by the patient has holistic attributes, so there are physical issues in that but there are also psychological issues, social issues and indeed spiritual issues, and the holistic practitioner, working with their team, would attempt to address each of



those areas. There are also non-drug interventions such as, for instance, aromatherapy, which we do an awful lot of at the Hospice. It plays a big part in making people comfortable. But there are other things like the use of acupuncture or TENS machines, so there is a whole variety. With some of our more challenging patients, we have to ask for help from the anaesthetic department at the hospital. Dr Wilkinson is very enthusiastic and can offer certain things like epidural analgesia or spinal analgesia, which can really help us in difficult cases.

What I say to patients now is that pain is not really the biggest problem any more, because it is one of the symptoms that we can deal with really quite well. There are, in fact, more difficult symptoms to deal with than pain; for instance, breathlessness would be one. But although people fear pain- that is what we fear most - in reality that is one symptom that we can get on top of, even if it means, in the most difficult cases, that there is a certain amount of sedation that goes along with i t

So, I can honestly say to you that we can offer an awful lot of pain control to every person. We can relieve people’s pain in nearly every case, in one way or another. In many people, they are pain controlled and still perfectly alert to continue their lives. In the small minority that might be seen as the more difficult cases, then there may be some sedation or the need to have things like epidurals, where perhaps mobility is then limited, but they are actually pain free.

Mr Anderson: So, virtually, you could say, in nearly 100 per cent of cases you can control the pain?

Dr Harris: We can do an awful lot for pain in 100 per cent of cases.

M r Anderson: If legislation was to be changed on the Island, what impact do you think that would have on recruitment of nurses and medics to the Island when the other countries round about us have different legislation?

Dr Harris: It may well become an issue. Certainly one doctor, as I have quoted, has said that they would up and leave the Isle of Man if it became legalised. I suppose it would be one of those things; it would almost be the first thing that was said whenever you said, *1 am thinking of working in the Isle of Man.' Somebody would say, ‘Oh, you will be doing euthanasia when you get there* and I suppose, for some people, they will take fright at that really.

So, I think it could be an issue. It is nice that the Isle of Man is viewed for other more positive things at the moment If that were to be its main claim to fame, that would be a great shame, I feel, as somebody who has lived here and enjoyed living here in the last 10 years.

M r Anderson: Thank you.Under the present law that we have, is it possible to give

treatment that might shorten the life of a patient by giving them that treatment without the doctor getting involved and getting into trouble by doing so? Under the current legislation, doctors do not get prosecuted for that, do they?

Dr Harris: No. There is this principle - 1 dare say you have heard it talked about - of ‘double effect’, and in essence that gives protection from prosecution of any intervention that is given with the intention of doing good but risks doing

some harm. So, in giving painkillers, you would clearly be intending to do good and to relieve pain, so the small risk of side-effects would be acceptable in that

That is a principle that is used, really, in all healthcare. If you go and have an operation, you are having it to do good, but there is a small risk of a serious adverse effect where you might be left worse off. But the practitioner would not be accused of acting in an illegal way under that principle.

Mr Anderson: Right, thank you. So, then, you cannot give us an example of a doctor whose first intention was to relieve suffering and who thereby shortened the life of a patient and who got into trouble as a consequence? You have not got an experience of that?

Dr Harris: I suppose where doctors can get into trouble is if they do not record what they are doing and why they are doing it at the time. They can sometimes be questioned about why they did something, and unless they can provide evidence of why they did something and what its intention was, then that could land them in difficulties, I suppose.

M r Anderson: Okay, thanks. That is all from me at the moment, Mr Chairman.


Mrs Hannan: Thank you.Could I just ask about consent? Does a patient entering

Hospice give consent?

Dr Harris: Consent for what?

Mrs Hannan: For treatment.

Dr Harris: There is an implied consent for any patient going to see a doctor, the same as if somebody was going to see their GR They are giving an implied consent to be listened to and to possibly be examined and for the doctor to suggest certain treatments. So, we operate under that primary premise.

Of course, all the people that we see at the Hospice have been referred by their GP or hospital consultant, and that is a form of consent, in that the GP would often say, ‘I would like to refer you for hospice services’ and presumably they say, 'Is that okay with you?’ or ‘I think it is in your interests’ and they agree to it

We hear of patients who say, ‘No. I would rather not be referred at the moment’, so they are clearly not giving consent, and so we, perhaps, only find out about them a little bit later on.

Mrs Hannan: So, there is no written consent?

Dr Harris: When you say ‘consent’, consent relates to individual activities, so written consent for what?

Mrs Hannan: For treatment in Hospice.

Dr Harris: There is no written consent for treatment However, just for instance, if a patient at the Hospice was transferred to Noble’s for an operation, there would then be a formal consent signed.



Mrs Hannan: Right. So, if a patient actually requested and gave written consent that they wanted to die, you would be opposed to that in relation to consent?

Dr Harris: Consent is based on an offer by a health carer to provide a certain type of intervention. What you are suggesting is the patient almost demanding a certain kind of treatment that is not on offer. To follow your argument, the patient might come in and say, 'I demand to have a heart transplant’ If that is something we cannot provide -

Mrs Hannan: I am looking at it from the point of view of trying to examine this particular issue not as it is now but in regard to consent, a patient going into Hospice consenting to something which is going to shorten their life expectancy or wishes, obviously because of their illness. But if it is their persistent request then surely there is a problem here about consent and the autonomy of the person.

Dr Harris: The Hospice fundamentally believes in the autonomy of the person. That is what we seek to affirm and empower. We take pride, really, in the fact that we discuss all the management issues with the patient I might well say to somebody, ‘There is this treatment or this treatment With the different implications of each, which would you prefer?* so there is consent for the things that are done to patients. There may not be a written consent form where somebody sighs along the dotted line in every case, but I think consent is much more than simply a form. It is a process, isn’t it? And we strongly believe that. A fundamental principle of medical ethics is that consent should be obtained before treatment and it should be an informed consent.

Mrs Hannan: Recently there was an article in the British Medical Journal: ‘Assisted Suicide’. It is written by Richard Huxtable, lecturer in medical law and ethics, and he starts off by saying:

‘The existing law on assisted suicide is contradictory, confused andopaque. We need to take a fresh look at this issue and perhaps preservethe essence of the compromise that the courts tacitly favour/

Do you feel that the British Medical Association and those sorts of organisations that you were talking about have actually studied this situation which he refers to as the courts tacitly favouring?

Dr Harris: I am sure they have. When he says ‘the courts tacitly favour’, he is saying that the courts tend not to prosecute doctors who may have crossed lines. He is actually saying that perhaps the laws are being too lenient, isn’t he, with doctors?

Mrs Hannan: No. He was mainly talking about issues before the courts, obviously. He was talking about Mr and Mrs Johnson, who were convicted of assisting the suicide of their daughter who had motor neurone disease because they did not do anything to stop her taking tablets and, when she did, they did not obviously call for help or anything like that, so...

Dr Harris: But they were not ultimately found guilty, were they?

M rs Hannan: Yes, they were, and other issues, too,

which they deal with, which they consider... The courts have made this decision.

We had this morning the case put to us of the Manchester conjoined twins. The court actually accepted that, by operating, one would die. That was obviously against the wishes of the parents, but they would both die otherwise, and so this was the tacit position of the courts accepting these sorts of issues.

Dr Harris: Yes, that is how they are interpreting current legislation, isn’t it?

Mrs Hannan: Yes, in that particular instance.

Dr Harris: Yes. Obviously that gentleman is suggesting a review of the legislation, and that is what you are doing, isn’t it?

Mrs Hannan: Yes. Thank you. You mentioned the Hippocratic oath. Have you actually taken the Hippocratic oath?

Dr Harris: I have not, actually, no. It stopped being used in British medical schools about 30 years ago now. We now use a passage from the Declaration of Geneva, but it was simply to set the historical context in medical care.

Mrs Hannan: You mentioned, too, the change of dealing with pain over the years. Surely that has also changed over time, because you mentioned not giving a fatal draught. Surely, in some instances, both nurses and doctors sometimes give that fatal draught

Dr Harris: No, I do not accept that point Sometimes patients might be quite poorly and are perhaps exhibiting some discomfort and medication is about to be given and the patient then dies before it is given. If that had been given a couple of minutes earlier, you might say then, ‘Oh, well, that was clearly a fatal draught’ It was just coincidence.

Mrs Hannan: But surely this is the double effect that you were talking about?

Dr Harris: Well, it is, but it does... I think when they talked about a ‘fatal draught’ back in Hippocrates' time, surely the point he is saying there is that doctors should not use their skills and knowledge to harm others. Being a doctor gives you special responsibilities to act wisely and use the tools that you have wisely, and so Hippocrates was setting down his view on what common standards all doctors should have, and obviously that oath was used for over 2,000 years.

Mrs Hannan: You mentioned the questions asked at the MORI poll and the postcards. How were your questions posed to your fellow members?

Dr Harris: Clearly, you will see that when we give you the report -

Mrs Hannan: But you were critical of the MORI poll and the postcard poll, so I think it is quite right that we should know what -



Dr Harris: In principle, they were single-line statements and doctors indicated that they strongly agreed with that, that they agreed, that there was no view, disagreed or strongly disagreed.

Mrs Hannan: What was the question?

Dr Harris: There was a whole variety of questions, about eight or nine questions. One of the questions stated the BMA view, which I have given to you today, and it simply said, ‘I agree with the BMA view’ either strongly agree, agree or whatever. Others said, ‘How many requests for euthanasia have you received in the last five years of practice?’ and obviously that was the response. 'Do you think it would be easy, in practice, to decide who had progressive and serious conditions and who did not?’ and things along those lines. One question said, ‘If it were to be legalised, would you be prepared to provide it yourself?’ ‘If it were to be legalised, would you be prepared to assess patients for it?’ ‘Would you be prepared to refer people to another doctor who would assess or provide it?’ So, there were a number of questions, really to get a flavour of their views, because I could have just come here and said, ‘The BMA thinks this and, therefore... * but you might have said, ‘Well, what do real Manx doctors feel about it?’ so it was thoroughly important to find out their views.

Mr Downie: Could I just ask: is a copy of that survey available for the Committee?

Dr Harris: Yes. It will come to you.

Mr Downie: Right. Thank you.

Mrs Hannan: Have you seen the House of'Lords Bill that is being discussed by a select committee of that place in the UK?

Dr Harris: You mean the Joffe Bill? I have seen certain transcripts relating to i t It is a very similar Bill, isn’t it?

Mrs Hannan: It relates to four doctors being party to the actual decision of the patient to ensure that it is a persistent request. Do you think that is reasonable?

Dr Harris: I would not feel that any legalisation was reasonable. Quite how it is dressed up is... You may have a difficulty on the Isle of Man, in the sense that there are only a certain number of working doctors, particularly if a good number opt out, which is what they appear... That is what they are saying at the moment. So, it may be difficult to actually find four doctors. It would be doctors who are not already involved in the patient’s case, I presume. Would it be? I do not quite know, but that might be a practical difficulty over here.

Mrs Hannan: That is all I have got for the moment, thanks.

The Chairman: Dr Harris, could I ask: you have talked about tens of thousands of incidents of unrequested death.

Dr Harris: I said tens of thousands of premature deaths.

The Chairman: That were unrequested.

Dr Harris: No, I did not say that. I said that there have been tens of thousands of premature deaths in these jurisdictions, but whether the overall suffering in those communities has reduced is very unclear, and the point about unrequested deaths was that, in the 1995 publication by Remmelink, of the 3,200 deaths that year by euthanasia, 900 of those were non-voluntary or not requested by the person who was subsequently killed, presumably requested by somebody else, a relative presumably.

The Chairman: So, with the checks and balances... If we think of that 900 then, you are saying there have been 900 premature deaths in Holland.

Dr Harris: In that year.

The Chairman: In that period. How many prosecutions would you reasonably expect to have followed that alarming incidence of premature death?

Dr Harris: I know, in fact, that there has only been about one prosecution in Holland, hasn’t there? The difficulty is the policing of i t You may say some of those reflect abuse. I think in their legislation there is some way in which it can be a non-voluntary case. There can be requests by others. So, they are not all illegal, those. I think their legislation allows the request to be made on occasions by somebody else apart from the person.

Mr Rimington: The legislation did not exist in -

Dr Harris: No, the case law and the tolerance by the courts, I should say. It is one thing to say at this stage, ‘Oh, we are going to police this really carefully and we are going to make sure there are no abuses’ but in reality how can you do that? If it was so easy to police law, then why would we have any crime?

The Chairman: Well, it is quite clearly not that simple. We have crime because we live in a human society, and we have a police force to try to deter it.

Mrs Hannan: And we have lawmakers.

The Chairman: And we have lawmakers, yes, to assist in that process. Can I ask you, then: if 85 per cent of those who responded - which is, I think, 58 per cent of your membership -

Dr Harris: Fifty-seven per cent in total responded.

The Chairman: Thank you. Eighty-five per cent of those would not engage - 1 think that is the figure I noted - so does that follow therefore that 15 per cent would?

Dr Harris: There may have been some that gave no view to that question, but there would be some who, yes, said that they would engage.

The Chairman: Okay. Thank you. You have talked about the welcome improvements in pain management and palliative care generally and the excellent work of the



Hospice in particular on the Island. Nonetheless, is it not the case that people still die in pain or distress? (Dr Harris: No.) That is never the case?

Dr Harris: It is a misrepresentation to say that people die in pain and distress. All I can say is that the people that I see dying I do not allow to die in pain and distress.

The Chairman: I am not suggesting for a moment that anyone would deliberately or recklessly allow that to happen.

Dr Harris: No. It would be a failure of medical care if somebody was dying in pain and distress.

The Chairman: But despite your best efforts, in every case - just to be clear - that failure, as you describe it, is not a reflection of lack of attention or of effort or application; it is a just a reflection of the fact of life that some people die in pain and distress.

Dr Harris: I think it is a misrepresentation, really. I would not like to agree to that point I do not think it really helps the debate if it is going to be used as some kind of a justification for introducing this legislation.

The Chairman: Okay. The reason I ask you that and look for some clarity in that... I can understand that you do not want to be drawn on that, and I respect that but you have put it to us that we do not need this legislation because pain management deals, in all cases, quite satisfactorily. So, I am just reflecting an assertion you have put

Dr Harris: It is palliative care services. There is more than just pain. Yes, what I am saying, really, is that it is not needed, that that is what doctors on the whole feel and nurses feel.

The Chairman: Yes. We seem to have as many different figures that reflect opinions for or against as we do surveys, so...

Dr Harris: Okay, but if I am able to have conveyed one thing to you this afternoon, Manx doctors on the whole do not see it as necessary. I know that when Beverley Critchlow came and talked to you she made it clear that Manx nurses also felt that way.

The Chairman: Yes. I think that was 4 per cent of her membership that chose to respond.

Dr Harris: Yes. I had a very good response, 57 per cent

The Chairman: Yes, you did.

Dr Harris: But it is different circumstances, really.

The Chairman: Now could I just touch again on the issue you introduced, the emotive, of course, issue about Nazi programmes of mass extermination? (Dr Harris: Yes.) From your experience and assessment, how many of your membership would say Lord Joffe is a Nazi?

Dr Harris: I am not sure they would use that expression. Maybe Adolf Hitler was not... Maybe when he started off he was not quite the same as the man he was in the 1940s. It is a slippery slope, isn’t it? That is the thing. You find yourself sliding down it and you then cannot turn back.

M r Rimington: The point 1 was trying to make was that the fascism in Nazi Germany was not led down the slippery slope by laws on euthanasia. It did not become an aggressive, militaristic, ethnic-cleansing regime because of its laws on euthanasia. Would you agree with that?

D r H arris: But what was consistent with the Nazi mindset was the systematic elimination of those whom they did not consider to be - (Mr Rimington: Pure.) Yes. And it can be a mindset can't it, and that is the danger, isn’t it, that that becomes almost acceptable that these people die because really their life is not worth living?

The Chairman: Okay. Can I just pick up on that and just so there is no uncertainty and no mixed messages go out to the community on the Isle of Man? What would be your estimation as to your membership if you asked the question, 4 Do you think the House of Keys has Nazis, Nazi tendencies?’

Dr Harris: I think that is a very unfair question.

The Chairman: I would prepare, if you still feel... you flagged that up -

Dr Harris; No, in some ways, I regret now putting it in, because it has obviously upset the pair of you.

Mrs Hannan: No, I think you have upset me, too.

Dr Harris: Oh, sorry. It is simply to illustrate the point that you could start something off in a completely well- meaning way, but you do not really know where it is going to end up.

That is the only point I was trying to make, apart from just reflecting that, in Germany, ¿hey are very opposed to euthanasia, whereas their near neighbours in Europe clearly tolerate it, don’t they?

The Chairman: Okay. And then could I ask you, just again for clarity: you spoke about one of your colleagues who you said would up and leave the Isle of Man if legislation is introduced. Did I misunderstand? Did he not say, ‘I would up and leave the Isle of Man if legislation is introduced and I am forced to engage in it’?

Dr Harris: No. He said:

41 would prefer to up and leave the Iste o f Man and practise elsewherethan to be a party to such legislation.*

So he -

The Chairman: Okay, so a ‘party’ would not mean an active party; that would be even part of the system which would... Would that be your interpretation of that?

Dr Harris: I could not comment. That is the statement.

House of Keys Select Committee on Voluntary Euthanasia - Evidence of D rB Harris


Mrs Hannan: Just one point I would like to make: what legislation covers the operation of Hospice?

Dr Harris: Mrs Hannan, I did point out that I am not really here to represent the Hospice; I am here to represent Manx doctors. I do work there, but I do -

Mrs Hannan: I know, but you brought it up in your presentation.

Dr Harris: I brought up palliative care services in my presentation.

Mrs Hannan: Palliative care, then: what legislation covers palliative care?

Dr Harris: What legislation covers palliative care? I am really not sure what legislation... You tell me what legislation does cover palliative care.

Mrs Hannan: No, just in relation to the Assisted Dying of the Terminally 111 Bill which is in the House of Lords, not the legislation that we have got before us. But part of that is to make provision for a person suffering from such a condition to receive pain relief medication, and I wondered what legislation palliative care operates under.

Dr Harris: I am not sure where you are coming from with that. I did notice in your wording that you put a phrase in about making provision for pain control; that currently exists, and that is common practice. It may be the first specific legislation in the area.

Mr Anderson: Just one final question from me, Dr Harris, as you have had quite a grilling. (Laughter) Has anybody who has been known to you and who was apparently fully mentally competent ever expressed the view to you that they wished they were dead and then subsequently changed their mind?

Dr Harris: I really cannot say that a patient has asked me really to have them killed, in my time in practice.

Mr Anderson: Not necessarily asked you to, but expressed that opinion.

Dr Harris: Sometimes people might say, ‘Oh, I feel really lousy this morning. I feel like I would be better off dead', or something like that, almost as an opening gambit in the conversation, and then you have to say, Tell me how you are feeling and why you are feeling like that.’

But clearly, from your point of view, you can feel quite strongly about something one day and the next day you feel a bit different about it, and so one would need to have a persistent request. That is what you said, isn’t it?

Mr Anderson: Yes. Okay, thank you.'

The Chairman: That is your experience, but again for clarity I think you said - 1 am sorry about my figures, because I have scribbled them - that there was a percentage of doctors who have been requested once, I think 4 per cent two to three times, and one doctor was asked more than 10 times over the last five years. Is that -

Dr Harris: Yes. That is what doctors reported on the survey.

The Chairman: Okay. So, it is an issue that doctors are faced with, albeit on an irregular and occasional basis.

Dr Harris: And certainly for those doctors who have been asked, it has been an issue at the time. And the fact that there has been such a good response to the survey, I suppose, is evidence that doctors are interested in this issue.

The Chairman: Yes. I do not think my colleagues have any further questions, so, Dr Harris, thank you for coming. Before you go, is there anything you would like to conclude by summarising?

Dr Harris: Thank you.I would just like to mention that the overall medical view

is that even if voluntary euthanasia becomes legal, it would still be morally and ethically wrong. As I said, 85 per cent of Manx doctors would not be prepared to be involved in any way. We are concerned that euthanasia will not, in reality, be a voluntary or free choice, in that vulnerable people will feel an obligation to opt for euthanasia to decrease the burden on relatives and that others may believe.it is best for them and would seek to influence them to choose euthanasia.

From a doctor’s point of view, euthanasia is a failure of medical care, and it will always be the case that if you have a patient who is suffering, it is better to remove the suffering than to remove the patient

Mrs Hannan: Before you go, could I just... You said 85 per cent; was it not 85 per cent of the 57 per cent that responded?

Dr Harris: Yes.


The Chairman: Thank you, Dr Hanis.

Mr Kermode was called at 4.08 p.m.

Procedural

The Chairman: If we ask Mr Kermode of Mec Vannin if he would kindly come forward and take the stand. I am conscious of the clock. Thank you for your forbearance, Mr Kermode. You know everybody on the Committee, I think.

Mr Kermode: Yes, I do.

The Chairman: And you know Mrs Cullen, our Clerk. (Mr Kermode: Yes.) Okay, so we will hand to you, if you would like to introduce yourself and your role and your position, Mr Kermode, and then we will do the question and answer again, if we may.

EVIDENCE OF MR M KERMODE

Mr Kermode: Right I hope all the Committee have seen

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr B HarrisProcedural

House of Keys Select Committee on Voluntary Euthanasia - Evidence of M r M Kermode


the submission that we made, originally. I have not brought anything in addition to that

I will just give you the background to it When the matter arose last year - 1 think it was Mr Rimington that brought it before the House - and submissions were requested, we looked through our policies to see if we had any guidance in this area to take a position, and we had nothing at all, nothing in our policies or previous statements to give us anything to go on, and so we called for the membership as a whole to make input to it over a debate over a period of time. We went into it with a totally open view; there was no slant one way or the other.

However, the discussions did, actually, fairly quickly narrow down, for practical purposes, mainly, that we would discuss the area only in the issue of a terminal and debilitating illness, not with a non-terminal illness. And there were practical aspects to that

So, after several discussions, it was concluded that we did advocate a change in the law under strictly controlled circumstances. And so 1 will just go through the submission, which you will already have seen, and expand upon it as I go.

Currently, the law in the Isle of Man makes it illegal to assist a person to commit suicide in any way, including the provision of the means to do so. It is also an act of murder to administer a painkiller or an anaesthetic in such quantity that death is the likely result So, doing somebody a favour, in somebody’s opinion, in saying, ‘There is a large dose. Take that’ is murder, and we are not advocating a change there.

However, we do accept that there are instances when certain terminal illnesses can lead to such a profound loss of quality of life, in terms of pain or loss of faculty, that the sufferer may find death by intervention a preferable alternative. Again, in the discussions here, our general feeling, from observation and personal experience, was that both the nature of the illnesses and the individuals who may express that view would actually be veiy small indeed.

Out of any given number of people who were diagnosed as terminally ill and fully aware of this, we did not believe that a great number of them would actually express a committed view to end their life by artificial intervention. However, we did not think that this was a matter for majority decision, because we are dealing here with an individual's choice over one of your most important parts of the life process, which is dying. You only get one shot at it.

That is popularly referred to as assisted suicide or euthanasia, and it must be recognised that there are two aspects to this: firstly there is the provision of the means for a person to take their own life, and secondly performing an act that will result in a person’s death. Obviously, you could be veiy irresponsible in doing either of those things, if you were to provide a person with means that would result in doing more harm than actually achieving the objectives. You have not helped them at all.

So, it is obvious that if there was to be a change in the law here, there must be very strict regulations. The only circumstance under which we can endorse this is where the condition has been diagnosed and confirmed as terminal, with no realistic chance of recovery. The illness must also involve a profound of loss of quality of life in terms of extreme pain or faculty. And we do mention this further on: it is not for us, a political party, to identify what those illnesses are or what the criteria are. That is for experts.

The victims of such conditions would have to go

through a high quality regime of impartial counselling and confirmation of desire before any assistance could be authorised. We debated this fairly much in isolation. Rather than start trawling through masses of information and conflicting arguments, we looked at it in a fairly vacuous environment and took it from first principles. So, having identified, in principle, that we thought it was conceivable that the law be changed, we then established what we thought would be the main guiding principles.

One of the first things we came out with was that anybody who was suffering from one of these identified conditions would have to have a course of counselling - and we will return to this later.

The mechanisms must be in place to ensure that this facility would only be available to people normally resident in the Isle of Man at the time of diagnosis or having an established and strong association with the Island prior to diagnosis, i.e. there must be no question of people using the Isle of Man to circumvent laws in their own country. This was in response to fears expressed within the party, and in general society, that this could be some sort of death-camp island, these sorts of fears. We were veiy firmly of the opinion that if the law were to change, it would be strictly for those people who were either normally resident here when diagnosis occurred or had a strong connection with the Island, had family here or you were bom here but moved away. Again, the exact definition is for later stages.

Such a facility must only be available through medical establishments that are primarily concerned with the treatment of illness, i.e. there should be no question of ‘death clinics’. What we are saying there is that you could not open up an establishment purely for the purpose of assisting suicide; it would have to be done on die back of existing medical facilities primarily concerned with treating and curing illness.

No person should be pressured or induced to act against their own personal or professional ethics. The previous witness spent a long time on this, and we certainly do not want to see anybody acting against what they feel are their best interests or their beliefs in this area. If you turn around say, ‘Well, what happens if no doctor would assist or advise?’ you say, ‘That is the way it is.’ We are looking at it from a law point of view. It is up to other people to deal with that aspect of it.

Having said that, at the end of the day, we did not believe that such a situation would actually arise. As has been confirmed by Dr Harris, there are a substantial body of doctors over here who would, in fact be prepared to support a change in the law, which, by implication, means that they would probably be prepared to take part in these things.

Assisted suicides would only be legal under consenting, qualified and authorised medical supervision using an approved method. That obviously is to allow for a very close person to actually assist in a suicide, but it must be under medical supervision, using an approved method. And the opportunity must be taken to reassert the illegality of taking any action without such high quality processes of expression and consent that will end a life prematurely. It is a widely held belief that many patients with terminal illness are given such high doses of painkillers that these may well be the cause of death rather than the illness itself. This may well be done without the patient’s informed knowledge or consent, and this must be illegal. We are relying on some personal evidence there. Several people have related to us, over the

House of Keys Select Committee on Voluntary Euthanasia — Evidence of Mr M Kermode


course of time, their own experiences, and I have my own experience there as well. If the Committee questions that statement, I am perfectly willing to back it up.

There is no question, and there must be no question, of a change in the law being the first step towards involuntary euthanasia. We have heard the expression ‘slippery slope’. Abortion is possibly an area where there has been a grave concern of that, and there have been moves by some bodies to liberalise the abortion regime. In actual fact, it does not appear to have happened. The controls are still there, and, of course, it is one area where doctors working for the NHS routinely involve themselves in the taking of a life without the consent of that life.

Mec Vannin does actually support the law as it stands in the Isle of Man; I am simply making that as a point. We have consenting adults here with the ability to express an opinion, so I do not see how... There is a conflict to me when doctors accept abortion, but would not accept voluntary euthanasia. As stated above, it is widely believed, and even tacitly accepted, that this is actually happening now, and that should not be the case.

Religious arguments against a change in the law are not sustainable. Matters of belief in this area are specific to each and every individual. Whilst respecting the rights of religions to instruct and advise their own followers in their respective moral ethics and theology, such ethics cannot be reasonably imposed upon those who do not adhere to them. No immortal souls can be saved by legislation. Mec Vannin is a secular party and we live in a fairly secular society. Religious groups argue within any given theological arguments with each other until the end of time, and we do not consider, on matters so close to the individual, that religious ethics should be used as a guiding factor in legislation such as this.

Anyone who is diagnosed as having a terminal condition should, as a matter of course, be offered a counselling service. That is not an assisted suicide counselling; it is to tell them the nature of the disease, what their expectations are, the nature of treatment et cetera as it progresses. If this is taken up and the specific condition qualifies for assisted suicide, this counselling would include the information that assisted suicide is legally available. That is how we believe the matter should be addressed. Only then would assisted suicide counselling be given, after a request for this has been made by the patients themselves. This has to come from the patient. It is a prerequisite of the law - and I am speaking speculatively when I say it is a prerequisite of the law, because it is a prerequisite of the law as we believe it should be - that the patient receive a minimum course of counselling at this stage.

If a patient is adamant, after undergoing such counselling, that they want an assisted suicide, the law must very clearly explain to them — and obviously we have to have impartial individuals to do this; it would require a trained professional- that they are required to specify whether they wish to be provided with the means alone or the means and/or assistance. This would mean that there would be no provision for subsequent assistance should they be unable to request it. What we are saying there is that if a person requested that they be given the means to commit suicide of their own volition and they passed the point of being able to request that someone intervene, then that is it and they have lost their opportunity, because again there must be no question whatsoever of that person being killed without their complete and utter desire for that to go ahead. This is to avoid any

possibility of a person who has changed their mind but is unable to communicate it being wrongfully killed.

To formally affirm the desire for assisted suicide, the patient must have undergone as full a course of counselling as they wish. Confirmation of their desire must be given and witnessed by both a recognised medical and recognised legal professional, and any subsequent reaffirmation should be to the same degree. Obviously, there is a time factor involved there. Some conditions may be diagnosed fairly early on and others may have only a matter of weeks, so there is a potential to require a reaffirmation if a certain timespan has lapsed. If the patient asks for assistance to commit the act, they must give clear indications of the level of debility they will undergo before they wish their request to be initiated.

We believe that it is acceptable for a specified person other than a doctor to assist if that person is agreeable, but only under strict medical supervision. This person must, however, also undergo a counselling session before consent can be given to assist and, if they actually have to carry out the act, also have counselling available afterwards. Let us not misinterpret what is going on here: no matter how much you love a person, to take their life must be very difficult.

If at any point after formal affirmation of desire a patient expresses any form of doubt, this will be a positive debar for any human assistance to actually commit the act This would not prevent the means being available to the patient to commit the act themselves should they not actually reverse their decision. So, in other words, if you had said, ‘I wish assisted suicide’ but then say, ‘I am not sure’, that is i t You will not get assistance. You could still have the means to commit the act yourself, but you could not have assistance from another person.

The stage of illness: assisted suicide should not be available until the illness reaches a profound stage. These stages can only be determined by close consultation with medical experts and will vary according to specific diseases.

At the actual act itself, apart from any persons requested by the patient there must be at least one authorised medical practitioner - and by that we mean a person who has been approved by the DHSS - and one authorised independent witness - and that person must be authorised by the judiciary. Presuming death is by assisted suicide, the certifying doctor will record the cause of death, and the fact that it is an assisted suicide must be mentioned in some way. The specifics of the wording are a matter for further consultation with legal and medical experts. The reason for this is that obviously, when an obituary or a notice of death is written, a lot of people would not wish it to be publicised that they had actually died from voluntary euthanasia. But at the same time, it must be recorded that this was actually the fact.

Should an act of assisted suicide take place under this regime, a full file would be passed to the coroner of inquests, who will review the evidence to satisfy himself that the procedures have been correctly followed. This being the case, there would be no need for an inquest. Only in the event of the coroner not being satisfied that all procedures have been correctly followed would there be need for an inquest

It is recognised that current verdicts available may not be appropriate. In the event of an inquest finding the correct procedure had not been followed, ‘unlawful killing’ is an option. Conversely, if procedures have been followed, either ‘lawful killing’ or ‘assisted suicide’ may be options, but again this requires consultation with legal experts. We are



not trying to say what it actually should be there.To round off» we believe that this provides a framework

within which a meaningful and workable act can be established. It is intended as a set of principles, and the party would welcome the opportunity, as I would now, to make further input.

Mrs Hannan: Thank you.You said about having safeguards in place, people

understanding what they are asking for and coming to that sort of decision. I think I am right that you said that it would be registered. If you felt that somebody did not want that to be, how would you do it? It would have to be a public document, surely.

M r Kermode: Exactly which instance or matter are we talking about now?

Mrs Hannan: If you have an assisted death, voluntary euthanasia, you said that people might not want it advertised that that is what they -

M r Kermode: Oh, yes, at the very end.

Mrs Hannan: Yes.- But surely it would have to be a public document?

M r Kermode: A death certificate is a public document, yes. This is where you would have to go into deeper consultation. The cause of death could be... It is entirely dependent on the means. We do not specify means in our submission; that is not for us to say so. But it could be very clinically what caused the death, or it could be recorded that it was an assisted suicide.

Well, cause of death would not be assisted suicide; cause of death would actually be, say, a barbiturate overdose or something like that, but as a result of assisted suicide. That probably would be recorded on the death certificate, which is a public document, but -

M rs Hannan: Also along with the condition that they were suffering from.

M r Kermode: I must admit I have not looked at a death certificate to see if that is actually is carried on there. I do not know whether that is required or not Perhaps you do -

M rs Hannan: I would have thought that... I am suggesting to you that the overlying condition would need to be recorded as part of that public document

M r Kermode: That is one for the legal and medical people to talk about, definitely, with the death certificates. What we are saying is that we do not want it broadcast We do want to respect the person’s privacy, but at the same time it must be somewhere recorded properly.

Mrs Hannan: Right. Can I just ask you, in relation to pain control, because that is a part of the legislation, and it has been suggested that it is properly recorded as well and can be requested: in considering this topic, you mentioned pain relief and administration of drugs and the like. I think you also mentioned, not in those terms, the double effect of relieving pain which would also have the effect of shortening

that person’s life. Do you think that is something that also could be requested by the patient, by the person, with their consent?

M r K erm ode: That they have pain relief? Yes, certainly.

Mrs Hannan: And that they would give consent to that, taking into account that that pain relief treatment or whatever could, in actual fact, shorten their life?

M r Kermode: Yes. My understanding at the moment is that although there are certain procedures in hospital which require specific consent, if you get taken into hospital and you are in extreme pain, the likelihood is that you will be administered with a painkiller, routinely, without specific consent given. The nature of some of these terminal illnesses, especially some of the cancers, is such that the pain is progressive. Because of the way the disease is operating, the dosages tend to go up. At the same time, the person’s awareness of life... Because the popular one seems to be one of the opium derivatives, diamorphine or something like that they are literally spaced out and this can be for periods of not hours, but days or even weeks. The effect of the drug itself must be shortening their life, otherwise it would be fine to go around taking heroin, and their quality of life is severely undermined by this, because they are just not there. They are a living body lying on a bed, but they are not the person. And, as I say, these states can go on for a long time. That drug might be controlling the pain, but it is not enhancing their quality of life.

M rs H annan: But would you accept that part of their ability to have treatment is with consent informed consent?

M r Kermode: I do not know if there is any consent regime at the moment We would certainly -

Mrs Hannan: No, I am talking about in the future.

Mr Kermode: I think, in matters like this, the greater degree of expressed consent the better. For painkilling drugs to... If you say to somebody, ‘We wish to administer drugs to control your pain, but the downside of these is that they might be shortening your life’ then that should be expressed.

Mrs Hannan: And that would be part of your suggested counselling, explaining of what happens? (Mr Kermode: Yes.) Thank you.

Mr Anderson: Just an initial question, M r Kermode: can you just tell us what the membership of your organisation is?

Mr Kermode: Probably more than the Labour Party, (Laughter and interjection) but it is not really an issue here. I do not know: 60-something.

Mr Anderson: 1 am not having a go at your organisation. I am just making the point that some parties have been invited and some have not, and I wanted to get a feel for the size of your organisation, really.



M r Kermode: The counts when we go to the polls... We have always done fairly well at the polls: Paul Kelly, over 1,000 votes in Braddan; llliam Costain, over 1,000 votes in Rushen - you would remember that, Mr Gill; myself, I got- (Interjection and laughter)

Mr Anderson: So, your membership is probably around about 60-ish?

M r Kermode; As I understand. I do not keep the membership records.

M r Anderson: Okay, thank you. You sat in earlier this afternoon and listened to what Dr Harris said about pain relief, and a lot of the issues that seemed to be raised in your discussion with your party were related to the pain issue. Would you agree that if your membership had the privilege of hearing that sort of question and answer dialogue, they would be better informed on the pain issue of this whole subject? Would you go along with what was said that, with modem palliative care and modem drugs, the pain issue to do with terminal illness is not such a big thing now?

M r Kermode: All I can say is, from my own personal experience, having been in hospital and in the Hospice fairly recently, that the people I have seen there have been in pain.

M r Anderson: Okay. We will move on, then. Do you think that any legislation that the House of Keys and Tynwald put forward should protect vulnerable groups of people?

M r Kermode: Vulnerable groups of people should always be protected, in any field.

M r Anderson: Would you not agree, then, that people who are terminally ill are a vulnerable group of people and that, if legislation was in force, that could impact some way on people’s decisions because they knew that legislation was there, especially if they thought they were being a burden to their family or their carers or the community at large?

M r Kermode: I do not think, on an issue like this, especially with the proposals we are making, that really would be the case, because the counselling would come from an impartial person.

But you do have the instance now where more and more people are being put into care homes, frequently by the children or closest relatives, and you could argue that these old, vulnerable people are simply being shuffled into a convenient place where they will not be a burden. So, you could argue that that is happening now.

I am not suggesting that is the case; I am simply saying that we have a parallel already there. But, in the regime we are talking about, the fence - the pole - would be that much higher. Our framework actually makes it very difficult for that to happen. I do not see anybody turning round and saying, ‘Oh, I feel a bit of a burden. Please stick a needle in me.'

M r Anderson: Do you not agree that they would not necessarily come out with that phrase but, because they feel they are a burden to their family - and maybe, in certain circumstances, there could be financial implications - and

they know that legislation is there, do you not think that could be at the back of their minds and could, in some way* influence their decision to go down that road?

M r Kermode: Given the regime of counselling that we are talking about and that it has to be done at the earliest possible time, and most people do get diagnosed well before things get really bad, the person will be acting, or should be acting, very much under their own opinion, and in a state of mind which is not prejudiced by an ongoing loss of faculty, at that point

So, I really do not believe that that would be the case. I am not saying that it has never happened, because I am quite certain that it has, but how many people, really, would start trying to encourage their close ones to commit suicide by whatever method, rather than go through the normal process?

M r Anderson: But would you agree that there is quite a fine line between depression and mental illness and that very fine line is very difficult for medics to interpret?

Mr Kermode: I am not a medical person. As I understand it, depression is a form of mental illness, but it is a treatable one. Anyone who gets diagnosed with terminal illness is bound to suffer some degree of depression, but that does not seem to stop people functioning very well, very focusedly, when this happens.

I have often thought to myself, ‘Good heavens. If somebody told me I had six months to live, it would be a teniblething’, and yet when that actually happens to people, they seem to cope remarkably well, in most circumstances, and have a high degree of focus, even a will to live. So, I do not really regard that the scenario that people will be encouraged to take their lives early by other people would be an issue, and I do not believe that very many people would actually, faced with this option, wish to take it

As J said before, we do feel that, even at the lowest change, most people would not opt to take this.

Mr Anderson: Do you think, then, that we should be making legislation for such a small minority when we could be exposing a bigger group of vulnerable people?

Mr Kermode: We are not exposing a bigger group of vulnerable people, as far as we can see. What we are saying is that there are definite instances where people feel that their quality of life, their dignity, this very important part of our life and death... They feel that they want to take issues into their own hands and, as the law stands, the rest of us are saying, ‘No, you cannot do that’, because of our feelings.

What we decided, eventually, was that we did not have the right to impose our feelings on other people to that degree, even if it is only a small minority, or we perceive that it would only be a small minority. We feel that, on such an important issue, that is the person’s own decision.

Mr Anderson: What limits do you think a society should place on personal autonomy, then?

Mr Kermode: Certainly, where your actions do not impinge upon another person, what right does society have to interfere with a person? The popular phrase is ‘what you do behind your own doors is your affair*. There are all



sorts of personal abuse that you can indulge in: alcohol and smoking. Now, because of the passive smoking element, of course, tobacco is becoming a more contentious drug. Alcohol, when it becomes a menace to other members of society, is a contentious drug - and it is a drug - but we are not saying, ‘You will not drink.’

Some societies do and, in fact, in this world, they are popularly referred to as despotic societies. They do not have alcohol problems.

Mr Anderson: So, finally, then, if there is a choice between making legislation for a small group at the potential of opening up an area to a vulnerable group, you would go for the first and not the second?

M r Kermode: You keep on talking about a vulnerable group, but you have not identified it to me yet

Mr Anderson: I think most people would accept that terminally ill and ill patients are a vulnerable group of people. You would?

Mr Kermode: Yes, but I have already said who, after getting diagnosed as terminally ill, rushes out and says, ‘Oh, I want to die now’ ? It very, very rarely happens. Furthermore, we have said that a counselling regime must be in place to make sure that they are not pressured, that these people are not coerced in any way, shape or form, so that the vulnerable ones are protected.

M r Anderson: No more from me, Mr Chairman,

Mr Downie: A couple of questions for you, Mr Kermode. I am quite impressed by the amount of work you have put into this. I would just like to ask you: who was involved in the discussions within your group regarding euthanasia and what research or consultation was carried out prior to your presenting the paper?

M r Kermode: The group was the Executive Committee plus any other members who wished to make any input in terms of a written submission or come along to the active discussions, so that was the formulation.

As I did say when I was reading from there, we did not start researching in terms of what other countries are doing; we looked at it from a very ‘bottom-up’ sort of viewpoint: what do we think should happen? So, it was very much done on a basis purely of principle and where we could find a bit of background on law and generally what is going on. The internet was obviously involved in a bit of research.

Mr Downie: I was interested that, in your presentation, you referred to, possibly, the production of a special death certificate, (Mr Kermode: Yes.) so that obviously the cause of death, which would go into the newspapers, just would not be shown as euthanasia, but I suppose, with what you suggested today, there could be a short post-mortem report without an autopsy but with the safeguards that that could be independently assessed by other doctors to make sure that the criteria laid down in the legislation were adhered to.

M r Kermode: Yes. As I understand it, if somebody dies within a certain time of being examined by a doctor and their death was expected, there is no need for an autopsy,

but in these instances, yes, there should be a case and we actually specify there that the file should be passed to the coroner. If it went to other doctors, it would be effectively fulfilling the same function, but, yes, there would have to be independent evidence to show that all stages have been complied with, and these should be available for inspection by professionals.

M r Downie: Fine. Good. By and large, then, you feel that some form of change in the law would be acceptable in the Isle of Man, provided it was properly controlled?

M r Kermode: We do. A high level of control, but we do think that the principle of a change is acceptable.

M r Downie: And just to reiterate: just for a limited number of circumstances, terminal illness where a person is suffering severe pain -

M r Kermode: Or loss of faculty.

M r Downie: Or loss of faculty.

M r Kermode: You mentioned the Diane Pretty case. That would probably be the sort of thing that would qualify for it

M r Downie: I know it is a touchy issue, but did you have any discussion in your group about euthanasia being available for young children with terminal illness?

M r Kermode: We touched on this. I am sorry, but I do not think it is mentioned specifically in the document.

M r Downie: That is why I asked you.

M r Kermode: Right No. It can only be by a consenting adult, and I know that leaves the question, ‘Well, what about children who are going through this sort of thing?’ Unfortunately, we feel that they are not sufficiently emotionally developed to -

M r Downie: Right The last thing I want to ask you is that, obviously, there is a legal and a moral dilemma within the BMA and the Royal College of Nursing currently. Would you feel that, if the Isle of Man were to go down the road of introducing this legislation, a person seeking euthanasia would be better off going to an organisation, say, outside the National Health Service or do you feel that this is something that should be delivered from within the Island’s normal healthcare facility, which is state run?

Mr Kermode: What we have said is that we do not want to see ‘death clinics’, so if this was available, it would have to be on the back of an existing medical facility. We have not specified private or National Health. Since we advocate a change, it would be nice to see the National Health Service being willing to participate in it. Does that answer your question okay?

Mr Downie: Yes, fine, thanks.

M r Rimington: I, too, like some of my colleagues, am interested in the body that came to the conclusions,



because most of the people who have come here have been representing an organisation or a professional body of opinion and, in fact, I think possibly you are the first person who represents a cross-section of the public. If we can take out the Mec Vannin side of it, outside of that, you are a public body. (Mr Kermode: Yes.) Can you give me a flavour of the people - obviously not their names, but their occupations or whatever - who were involved in the...

Mr Kermode: A very broad range. We have small businessmen, teachers, students. I was an engineer for 20- something years, a precision engineer. I really do not know others’ professions, you know. I meet them, but I frequently do not know what they actually do. But, yes, it is a fairly broad cross-section. Yes, we have had medical doctors in - 1 do not know if we have got any at the moment

Mr Rimington: If nothing else, I would like to thank you, as a group, for sitting down and putting that considerable time in and coming up with something which is actually replicated elsewhere. The same principles are replicated elsewhere. I do not know if you would accept that your idea saying something different to a death certificate is similar to the review committee in the Netherlands legislation or the proposed monitoring commission in the UK. They are probably the same -

M r Kermode: Dare I say great minds think alike? (Laughter)

M r Rimington: Better not say it too often! (Laughter) I have not really got much to ask you, but I do welcome what you have said so far, in that old people are covered in most things. Do you think that the Isle of Man and your view on Isle of Man society would take us down the route of the slippeiy slope?

M r Kermode: No. The first thing, of course, is that we would never run away from the term ‘nationalist* and we have a fair degree of socialists in, but we are not National Socialists. National Socialists were a body of people in Germany who adopted fascism. Elements of the Conservative party in England, which seems to be very well treated over here, could be very fairly described as ‘fascist’. We are on the left, on the other side, not far left but we are on the other side of that. And if you look at our track record on public statements we have made, we tend to be a liberal party. We have opposed... The birching lobby was one of the things. A lot of people expected us to be pro-birch; we were not There are a lot of members who are very anti-capital punishment, that sort of thing. So, we do tend to be more liberal.

M r Rimington: From your view of everybody else outside or Manx society or parliament, the lot, do you think that, whatever the weaknesses - you obviously, as a political party, perceived weaknesses, otherwise you would not have come together - our society, widely speaking, would be in danger of going down a slippery slope if we introduced this legislation? Can I put words into your mouth and then you can refute them? Do you think we are sufficiently strong in the sense of our values and...

Mr Kermode: I think we are. Obviously, it was discussed on several occasions during the course of things. Will this

be, as several people have expressed concerns, the first step towards saying, ‘Well, they are getting on a bit. It would be better for them and for society to help them on their way’? And we are satisfied that that is not the case, that this would not be a result of it. And if we thought that was potentially the result of it, we would not have even considered advocating the change. We do think that Manx society is broad shouldered enough, in spite of its many faults, to handle this responsibly.

Mr Rimington: Yes. Thanks.

The Chairman: I do not think my colleagues have any other questions, so could I conclude with just one, please, Mr Kermode? (Mr Kermode: Yes.) You will be aware, perhaps, of the UK Bill, where one of the specifics in relation to the people that would be eligible to be considered under this BUI is defined as a ‘terminal illness’. Perhaps just for the Hansard if I read that to you, the definition that comes with this Bill is:

’Terminal illness means an illness which, in the opinion o f the consulting physician, is inevitably progressive, the effects of which cannot be reversed by treatment, although treatment may be successful in relieving symptoms temporarily, and which will be likely to result in the patient’s death within a few months at most*

There is no definition of ‘a few months’, but -

Mr Kermode: I think we mean a year at most there.

The Chairman: Yes. I think it would say a year if it meant more than that If we work on that assumption, just going back to the burden concern that was raised, what benefit, to be blunt, would somebody who hoped to benefit from the death of the person in question... If they were going to be left a house, for example, would you think it would be a realistic concern that they would be urging their loved one not to be a burden, given those circumstances?

M r Kermode: If the person is as good as guaranteed to die within a few months, there is hardly any point in hurrying them along unless you are exceptionally greedy. Sorry to be blunt about this, but there are those people out there, I suppose.

I can only, with a question like that put myself in the position: if one of my children came to me if I was terminally ill and said, ‘Hey, Dad, have you left me the house, by the way, and have you considered voluntary euthanasia?’ I think I would be inclined to say, ‘Question I - yes, but it is changing. Question 2 - no.' (Laughter)

The Chairman: Thank you. And just finally, then, would you think it would be a fair position to say that abuses of a system or any legislation, as we heard from the previous witness, can occur whatever safeguards there are, but they are more likely to occur in an unregulated system?

Mr Kermode: I think abuse is more likely to occur in an unregulated system. Using abortion as an example - which has certain parallels to this, of course - when abortion was completely illegal, back-street abortion was going on, with quite horrific results in many instances. It raises the question of people being despatched early now and, as I inferred in the document, a lot of people feel that that is going on - not



expressly, but it is understood, on many occasions, that it will do the person no harm to receive a dose that may result in their death, and that is tacitly accepted, as is mentioned. So, we perceive that this would actually alleviate that situation.

The Chairman: I am conscious of the clock and thank you for attending on a Friday afternoon. Are there any concluding comments that you would like to make?

Mr Kermode: No, except to thank the Committee for their time and for making this opportunity available to us.

When the issue did arise, we did say, ‘Is this an issue for us to deal with?’ and we said, ‘Yes. As a political party, we must deal with i t ’ We are not a campaigning group on this issue, but we felt it was our duty to make an input on it, so we thank you.

The Chairman: Thank you very much, Mr Kermode, and ladies and gentlemen. That concludes the sitting for today.






(HANSARD)


B I NG E R - L H E H MY C H I O N E COYRT- GY- BAASE MY G H I N A G H LESH COARDAI LYS

Douglas, Wednesday, 23rd June 2004

Published by the Office of the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle of Man. © Court of Tynwald, 2004 Printed by The Copy Shop Limited, 48 Bucks Road, Douglas, Isle of Man

Price Band C

90 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004


Mr D M Anderson MHK Hon. A F Downie MHK


Clerks;Mrs M Cullen, Deputy Cleik of Tynwald

Business transacted

Page

Procedural............................................................................................................................................................................... 91

Evidence of M r J L M Quinn, St Bridget's Hospice.......................................................................................................... 91

The Committee adjourned at 12.00 p.m. until 12.05 p.m.

Procedural............................................................................................................................................................................ 101

Evidence of Dr R Huxtable, Bristol University...............................................................................................................101

The Committee sat in private at 1.17 p.m.

Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 91KCE


The Committee sat in public at 10,30 a.m. in the Millennium Conference Room,



Procedural

The Chairman (Mr Gill): Moghrey mie, ladies and gentlemen, Mr Quinn. Welcome to the sitting of this Select Committee looking into issues around voluntary euthanasia. I think, Mr Quinn, do you know all the Committee? If not, we will -

Mr.Quinn: Yes, I do.

The Chairman: You do, yes, okay.The practice we have adopted, Mr Quinn, is to give

witnesses the opportunity to make a short presentation and then go into a question-and-answer sequence. Would that format be acceptable to you, sir?

Mr Quinn: Certainly, Mr Chairman.

The Chairman: Thank you. Of course, we are being recorded for Hansard so if the Hansard Clerk indicates that he is having difficulty in hearing what we are saying, perhaps we could just be mindful of that.

Mr Quinn: Yes, thank you.

The Chairman: Mr Quinn, could I just confirm that you have had two notes of outline questions?

Mr Quinn: Yes. I was just going to ask, Mr Chairman, would you wish me to go through those questions at this stage? Might that be helpful, if I went through those?

The Chairman: 1 think we will leave that entirely with yourself, if you want to present, and then we will come back to those, or any other questions that arise.

EVIDENCE OF MR J L M QUINN

Mr Quinn: My name is John Quinn. I am the Chairman of the Management Committee of Hospice Care, an office which I have had the privilege of holding since May 2001.

Just very briefly, prior to my appointment as the Chairman of Hospice Care, I had had no previous involvement with the charity. My only experience was that during 2000, my father, James Quinn, died at St Bridget's on 15th November 2000, and that is how I became aware of the services and the help and support which Hospice Care gives to patients

and families on the Island.In my role as Chairman of Hospice Care, I am concerned

with all aspects of the care which we provide to our patients and to their families here on the Island.

I think it might be worthwhile, very briefly, just explaining what Hospice Care is. It is a company which is limited by guarantee. It is obviously based here, and its only objects, which are charitable objects, are to provide hospice care to patients and families here on the Island.

Like any company, it has directors, which, in the case of Hospice Care, are called members of a management committee, as opposed to a board of directors. We, therefore, have a management committee of which I am the Chairman, which is made up of various people of various disciplines, and, as members of the management committee, they are, by law, charity trustees and have the same legal responsibilities and duties as charity trustees generally.

The members of the management committee have been selected for their commitment to the work of Hospice Care, and the skills and experience which they can offer, the aim being to have a balance of skills and experience needed to direct the work of Hospice Care.

Just to give you a sample, the present members of the management committee are: myself, I am an advocate, in practice, a past president of the Law Society, and I bring to the management committee my experience as such; we have Penny Crichton, who is a retired Board of Education adviser, Les Doherty, who is a retired Managing Director of Marsh, Isle of Man, who brings with him his business acumen; we are privileged to have Alan Townsend, a retired consultant gynaecologist; John Brown, an investment banker; Philip Dean, a chartered accountant; John Dennis, an IT and marketing specialist; Charles Crossley, a chartered accountant; Dr Neil Hocking, consultant physician and medical director at Noble’s Hospital; and Dr Harding, who is a general practitioner, representing general practitioners on the Island.

A representative of the Department of Health and Social Security also attends all regular meetings of the management committee.

The management committee’s main role is: to ensure the charity’s activities are within the law; to ensure the charity’s activities remain its charitable objects; to determine the charity’s mission and purpose; to develop and agree the charity’s strategic plan; to agree the budget and monitor performance; to ensure the charity’s property, assets and resources are managed and protected effectively; to monitor the charity’s services; to ensure accountability as required by law; to appoint a general manager and to monitor his performance; to appoint senior staff and monitor their performance; to act as a court of appeal on personnel matters; and to act within the powers set out in our governing document, which is our memorandum of association.

Members of the management committee, as trustees of the charity, have a serious legal responsibility requiring them to take an active role in the governance of the charity. We are, by law, required to act in person, and any decisions affecting the charity have to be made collectively.

We do, however, have the power to delegate, and in this respect we delegate the day-to-day management of the charity and its operations to our staff, who we must ensure are properly educated, qualified and, certainly from our point of view, have access to continuing education, particularly in the field of palliative care.

ProceduralHouse of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn

92KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence

I think, I should mention the position concerning Hospice as far as the regulatory point of view is concerned, and especially from the point of view of the patients of Hospice Care. The patients of Hospice Care are protected in three ways: firstly, by general criminal law; secondly, by regulations as to how the Hospice operates and its medical staff’s professional standards; and thirdly, by the Department of Health and Social Security's own registration rules.

Hospice must be registered under the provisions of the Nursing and Residential Homes Act 1988, and, under that Act, the Department of Health and Social Security issues to Hospice a licence ora permit to operate, and the relevant provision is under section 1 of that Act, as we are operating premises which are used for the reception of and provision of nursing for persons suffering from any sickness, injury or infirmity.

We are subject to periodic inspections; we are subject to any regulations which the Department issues concerning, for example, the control of drugs and their use, storage, security, and we are subject, as I have said, under that particular Act, as well as general criminal law, to prosecution if there was any incidence of an offence of ill treatment

So, as far as the public are concerned, they are protected in the same way as any patient entering Noble’s Hospital, from the general rule of law, and, in particular, in our instance, under the regulation and control and inspection of the Department of Health and Social Security.

Hospice Care on the Island offers care to patients who are suffering from life-threatening or terminal illness, primarily for those suffering from cancer. However, there are a few instances where our services are made available to noncancer sufferers and in that respect, in respect of patients who, from my perspective - and I say this as a lay person- are reaching the end of their journey with their disease, and are in need of palliative care.

The concept of Hospice in treating its patients is to promote comprehensive care for those with life-threatening illness, in order to maximise the quality of life remaining, enabling patients to live until they die.

I have been asked, ‘What are the numbers of patients in Hospice or at home receiving a service?’ I will try and help you with the relevant statistics.

The total number of patients on our books, at the beginning of May 2004, was 355. At the beginning of May 2004, there were eight patients in our in-patient unit At the beginning of May 2004, there were some eight patients being treated in their homes by our Hospice at Home service.

The number of patients in the in-patient unit or under our care at home varies from time to time. For the year ending 31 st December2003, there had been a total of 199 admissions to the in-patient unit, and some 103 patients had been cared for by our Hospice at Home service.

As I have said, at any one time, there are in excess of 300 patients on our books. They will, however, be receiving our full range of services, perhaps attending our day unit receiving our complementary therapies, attending our physiotherapy unit our lymphedema nurse, our occupational therapy unit being guided by our social worker, or being attended to and advised on their treatment by our St Bridget’s MacMillan nurses working in the community, or, alternatively, making use of our bereavement services or our chaplaincy.

We view all of those aspects as part of the symptom control and management whether it be the physical or

physiosociological symptoms which a patient or their family have problems with.

I am asked, ‘How many at-home patients come to Hospice?’ If by this you mean how many of the patients being treated in their homes end up in the in-patient unit then the answer is generally very few.

It is only if a patient’s symptoms are such that they need, for example, specialist nursing equipment - for example, hoists - or perhaps more focused or specialist symptom control, that they would have to be transferred to the inpatient unit

Our philosophy is to try and accommodate a patient’s wishes. If they are at the end of their journey and their wish is to, perhaps, die at home, we will do our best to accommodate that

If you mean how many patients come to us from their home, not whilst they are under our Hospice at Home service, then the figures vary. If you analyse the figures of our admissions, for the year ending 31st December 2003, 126 of the 199 came from their home.

I think it is important to say that they would, at that stage, have been under the care of our St Bridget’s MacMillan nurses, but not necessarily receiving the Hospice at Home care service. Sixty-one came from the hospital, and 12 came from nursing or residential homes.

I am asked, ‘Are Hospice policies consistent with community treatment as with in-patient treatment in hospitals et cetera?’, and the answer to that is yes.

In this respect, you will, please, appreciate that we do not work in isolation, but closely with general practitioners, the hospitals, the doctors there, consultants, the nurses in the community, from whom our referrals are received.

It is only for our own in-patients, once they come under our care, that we would get into the situation of prescribing drugs, and this is, generally, in accord with a treatment plan, either defined by the hospital or the GP treating the patient, or designed in conjunction with them. We do not work in isolation.

I am asked, ‘What evidence is there that voluntary euthanasia or patient-assisted suicide in tightly-controlled circumstances would undermine Hospice on the Isle of Man?’ I am not aware of any local evidence.

It is not, however, in my view, a question of undermining the Hospice position, as we are not seeking to argue that euthanasia or assisted suicide would undermine Hospice Care on the Island. On the contrary, our aim is simply to promote, as I have said, the comprehensive care of those with life-threatening illnesses, in order to maximise the quality of life remaining, enabling patients to live until they die, and to promote the concept that euthanasia and assisted suicide should not be an option.

I am asked, ‘Are any groups excluded from Hospice Care?’ As I have explained, no cancer patients are excluded, but as I have said, we are, essentially, a cancer charity. We do, however, offer hospice care to any other condition in the terminal phase, where treatment has got past the stage of managing the disease itself, to managing the end stage.

There is, however, a gap. We are not able to offer the full range of our palliative care services to non-cancer patients.

I am asked, ‘Is Hospice a person-centred organisation or service led?’ It is completely person centred. Patients are involved at all stages of the discussions concerning their treatment plan and their care, and their treatment plan

House of Keys Select Committee on Voluntary Euthanasia - Evidence of M r J L M Quinn

Oral Evidence SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 93 KCE

is designed around their specific and individual needs and aspirations, and it is always of some amusement, in some ways, to me, to compare it perhaps with a hospital regime, because insofar as our patients are concerned, they wake when they want to, they eat what and when they want, and, essentially, our role is to try and do whatever they want us to do, within reason.

Our patients and people who represent them are also involved by us in the development of our services, so we consult with them.

I am asked, ‘Have there ever been any circumstances in which dosages of life-shortening medication have been prescribed in the Isle of Man Hospice?’ The answer to that is no, and I have specifically put that to our medical director, who assures me that, to his certain knowledge, no dosage has ever been prescribed with the intention of shortening life. That is completely contrary to the Hospice Care philosophy.

I should say that it is the view of Hospice Care and those involved in palliative cate medicine, that medication given in the terminal stages of life does not hasten death. The patient dies as a result of the progression of the underlying condition. We do not prescribe medication with the intention of hastening death.

I am asked,4 Do you employ a multi-disciplinary care team? If so, is the chaplain always part of this team's deliberation?’ The answer to that is yes. Our multidisciplinary team always consists of doctors, nurses, the chaplain, our complementary therapists, our physio- and our occupational therapists.

We do not at the present time have, as part of our staffing, a psychiatrist We have identified a need and are simply trying to find resources to make that appointment

At the present time, as and when the need arises for any psychiatric help, we have to buy that skill in for our patients, and we do.

I am asked, ‘How would Hospice respond to a persistent informed and competent response for voluntary euthanasia or patient-assisted suicide now, and if the law allowed voluntary euthanasia or patient-assisted suicide in the future?’ Our response now would be to decline, as neither voluntary euthanasia or patient-assisted suicide is on offer or, of course, is legal.

If legalised, as the Hospice philosophy is currently drawn, it could still not be an option which we would offer our patients. It would take a change of the Hospice philosophy to enable that to happen, and I would say I would find it hard to imagine that that would ever happen, as to do so would, in a sense, be an admission that Hospice Care has failed to provide the patients with the palliative care they require.

At Hospice Care, we are not prepared to accept that pain and suffering cannot be controlled to an acceptable level, resulting in the patient and their family achieving a reasonable quality of life, and the patient as I say, being able to live until they die.

I am asked about patient consent As I have said, our patients are under the care of our own doctor certainly when they come into the in-patient unit or when they, perhaps, are being treated at the Hospice, under our Hospice at Home service, but in those circumstances more likely under the direct care of their GP. We expect that they will comply - this is all the doctors - with best medical practice in treating their patients.

We have issued our own doctors with a protocol

governing patient care, with which they have to comply. Part of that protocol, part of the protocol and guidance issued by the British Medical Association to its doctors, is that they must consult with their patients, and we do.

Now, I do not know whether you have considered the General Medical Council’s guidance on withholding and withdrawing life-prolonging treatments and good practice in decision-making. If not, I would urge you to do so. I do not propose to refer to that in any detail. It is there in print for everyone to see.

The Chairman: Would you be able to give us a copy of that document?

Mr Quinn: I can certainly do that

The Chairman: Thank you.

M r Quinn: I am then asked about the control of medication, and if I could perhaps explain what happens: all medication given in Hospice - or indeed, if the situation arose, to a patient under our Hospice at Home service, which is very unlikely, because I have said they are usually under the care of their own G P - has to be prescribed by one of our doctors. None of our nurses can prescribe medication.

Controlled drugs, such as morphine, have to be administered by two registered nurses. Our medication is issued to us by Noble’s and is strictly controlled. The Noble’s pharmacist periodically inspects, checks storage, supplies, and carries out an audit of our drug book; and, as I have said, we are also open and are inspected by the nursing-home inspectorate who similarly, as one of their functions, carry out a check of our drugs, our usage, our drug book and our security of the medication we hold.

I am confident that the proper controls are in place at Hospice Care, as far as medication is concerned.

Our doctors, in prescribing drugs, as to quantity et cetera, follow the advice from the Mersey Network Group and advice from hospital consultants, but, as I have said, also work as part of a team - we do not work in isolation - and if a patient often comes to us with a defined treatment plan, then they will work within that plan.

I am asked about registration of deaths. On the death of a patient in our care, the procedure is exactly the same as at the hospital or elsewhere, in that the death certificate need only be signed by one doctor, normally the doctor caring for the patient unless, of course, there is a cremation.

In the case of a cremation, a second doctor has to sign and, before doing so, has to view the body. The cremation form has then to be signed by a third doctor. I am not too sure, actually - and I should say this because I may have actually got this wrong - whether it is the second or the third doctor who has got to view the body, but certainly one other doctor, other than the doctor treating the patient, has got to view the body.

As far as controls are concerned: no different to anywhere else* It is a doctor’s duty - so that is, if it is a case of cremation, any of the three signing - to report any death he considers suspicious. In addition, a family member, friend, carer, or whoever, could report a suspicious death, which could then lead to an autopsy, which, as you will be aware, routinely includes toxicology. So, our position is no different from anywhere else.

I am then asked whether I can feel that in some difficult


94 KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence

terminal circumstances, where pain and suffering cannot be effectively controlled, patients in the care of Hospice should, subject to amending statute law, be assisted to have a peaceful death. The simple answer to that is no. I do not consider that that should happen.

As I have said, we firstly do not accept that pain and suffering cannot be effectively controlled to an acceptable level. We are not, however, suggesting that a position would be achieved where there will be an absence of pain, but we believe we can get it under control and the patient to the stage where they are content to live their life until they die.

In my relatively short time at Hospice, I can certainly say I have not come across a situation where this has not been achieved for a patient under our care.

The development of palliative care and medicines continues apace, and who knows how things will progress in the future? This, however, may - and I think we have got to acknowledge - result in the patient being slightly sedated at times as part of their pain control regime, but often this is temporary, until such time as the patient gets used to that regime.

1 think it is also very important to understand that the treatment of pain and suffering is not just a question of issuing medication, but also by means of our non-drug interventions, which are complementary therapies, et cetera. Achieving a peaceful death is very much part of the Hospice Care aim, but not before patients* time, and that time is dictated by the progress of the underlying disease, not by the patient's wish to die.

And, as I have said, we help with the non-drug intervention: sometimes, the symptoms are more psychological than actually physical, and in that respect, we offer aromatherapy, acupuncture. We, as I have said, have excellent nursing equipment, such as pressure relieving mattresses and hoists. ■- We refer to radiotherapy, we provide psychological support when necessary, and, importantly, we get involved in solving many social problems, and we offer spiritual support

I have asked my team, and 1 am told that, in die 21 years of providing hospice care to over2,500 patients on the Island, no-one is aware of any patient or family member asking for an assisted death or to hasten their death.

I am asked to explain how the present Hospice philosophy of providing pain relief functions and: ‘Are certain dnigs administered in the final stages of Hospice Care that would seriously damage vital organs, in order to bring about a peaceful death?’ Pain relief for our patients is achieved by dealing with each patient's individual needs and making an assessment encompassing physical, psychological, social and spiritual concerns.

This assessment as I have said, is carried out by a trained multi-disciplinary team, who then, in conjunction or consultation with the patient, or if the patient is perhaps not in a position to be so consulted, with their family and carers, come up with a therapeutic plan, drawn up which would involve a whole range of drugs and non-drug interventions.

The medication usually would involve painkillers, which,I am told, are anti-inflammatory painkillers, and anaesthetic techniques which we are able to provide with the assistance of the Noble’s Anaesthetic Department.

Once we get to that stage drugs are not issued with the intention of damaging vital organs, in order to bring about a peaceful death. The cause of the death is the underlying disease in its terminal stage.

Morphine, which we all think of, in this respect, as being perhaps the most effective painkiller at this stage of a patient’s journey, with their disease, does not I am advised, damage vital organs. So, as I have said, we do not administer drugs with intentions of hastening death, as that would be an anathema to us. We are content to let nature take its course, and, by this, I mean the nature of the underlying disease.

Perhaps, I should, at this stage, explain our admissions policy into our inpatients unit and, certainly, for our Hospice Care unit The fallacy is that it is a place where people come to die, and nothing can be further from the truth.

The admissions, generally, fall into three categories: those in the respite care; those in need of focused symptom control and, as I say, that may not just simply be the physical pain and suffering, but also the psychological and, perhaps, there are social and spiritual matters which need to be addressed; and then, finally, those who have, unfortunately, reached the end of their journey.

The first two categories will be discharged once they have, in simple terms, had their respite care, and once their symptoms are under control.

Those who come to us at the end of their journey, as I have said, are referred to us by GPs, by the hospital, nursing homes and the residential homes or by community nurses. Those people are dying, not by our diagnosis, but usually that of others, and our job, at that stage, for that category, is to make them as comfortable as possible, both physically, mentally and spiritually, and do whatever we can in that regard.

Once admitted under that category, it is the nature of the disease from which they suffer which will dictate their passing - not us or the medication which they are given by us.

I am asked, ‘Where large doses of pain-relief drugs have been administered which could have contributed to the impending death of a patient what is entered on the death certificate, and what safeguards are there in the system?* For example, I am asked, ‘Do two doctors sign the cause of death?’

Firstly, the only dose of pain relieving drugs ever given will be the dose that is required to bring about pain relief to a particular patient, no more. It is the considered and clinical belief of palliative care physicians that this does not contribute to the death of the patient, despite the seemingly popular misconception that it does.

The patient dies because of the progression of the underlying disease. By analogy, before the development of modem medicines and palliative care treatments, people died because of those diseases, even though no painkillers were given. The death certificate only records the cause of death namely the underlying disease, for example breast cancer, as that is the cause of death.

I have mentioned already, Mr Chairman, the position regarding the death certificates, and I do not need to make any further comment on that

I am asked for my views on hospice care in America where, following a long period of terminal illness, euthanasia is offered as an option. In the short time available to me, I have only found one of the 50 states in the USA that provides euthanasia as a treatment option.

I think you should understand, however, that throughout the world the hospice movement is not the same as in the UK or, indeed, the Isle of Man model. Some, for example, operate more like a private nursing home, charging large fees, and it may be that, in your researches, you might find examples in other jurisdictions where euthanasia has been

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Mr J L M Quinn


legalised, where something akin to a hospice may offer that as an option; I do not know.

All that I can say is that we at Hospice Care, here on the Island, disagree with euthanasia or patient-assisted suicide being offered as an option to our patients.

I am asked for my views on living wills. We consider that living wills are helpful as they give a patient the opportunity of opting out of certain medical interventions in advance. They state a patient's preference about a time when they would not be competent to make a decision. Examples would be to opt out of receiving cardiac resuscitation in the event of their heart stopping. In that case, of course, it is not the failure to resuscitate from which the patient would die, but from the cardiac arrest. If correctly drawn, with the proper legal safeguards, we can see that they will be of help to the caring team.

However, living wills must not, and do not at present, allow a patient to opt in to an intervention that is not offered They cannot currently be used by the patient to demand any treatment - something like euthanasia, for example, or to demand a health transplant, for example, or any other treatment that is not available. So, we see them as being very useful, as giving guidance for opting out, but not opting in.

But there are difficulties and, if I can, for a moment, put a legal hat on, I wrote an article, recently, when I was reminded that medicine and the law are very uneasy bed-fellows, as the law seeks to deal with certainties, and medicine uncertainties, and I would like to leave you with a little example which I focused on in that article.

The example is a patient who is 79. He lives in a residential home. He has a devoted family who visit him regularly. He has dementia. He can, however, walk and feed himself, but he does need some help in some functions, such as dressing. His physical health is good. He recognises his family and is very, very pleased, when they visit, to see them. He is unable to read which he used to enjoyé He is undemanding, and he is popular with staff and gives no outward signs whatsoever of being in any way distressed. So, for all intents and purposes, he appears to have a reasonable quality of life.

When he was 70 he made a living will, when he enjoyed good mental and physical health. The residential home have a copy of this. Under his living will, he had given an advance directive that should he develop severe degenerative brain disease, or another condition of comparable gravity, and as a result suffer mental impairment, to the extent that he was unable to participate in decisions, then he did not want to be given active treatment, such as antibiotics, should he develop any life-threatening medical condition.

One night, he came down with a high fever and was diagnosed as having pneumonia. With antibiotic treatment, it was anticipated he would make a full recovery; without it, there is a significant chance he would die, and 1 pose the question: what would you do?

So, there are difficulties. I am asked for the views of doctors or nurses on assisting dying, working within the Hospice or Angel environment, and I have asked that question. Both my doctors, nurses and my St Bridget’s Macmillan nurses work in the community, and all my healthcare team are solidly against assisted dying as an option, and I have also read of the surveys done by hospice doctors and nurses in the UK that, similarly, have been solidly against legalising assisted dying, and more than that, which is important, nearly all have expressed the view that they would

not be involved in providing euthanasia or patient-assisted suicide, even if it were legalised.

That, Mr Chairman, deals with the questions I was posed, and I am extremely grateful for having been given the opportunity to consult with my medical team on those questions. I am now happy to try and answer any other questions you might have.

The Chairm an: Thank you. Before I turn to my colleagues, could you provide us with a copy of the article you just related there, Mr Quinn, that you had written?

Mr Quinn: Yes. Quite sure.

The Chairman: Thank you. Mrs Hannan.

Mrs Hannan: Yes, could I just ask you about the GMC guidelines you mentioned? (Mr Quinn: Yes.) What does it say about the situation that you related about the 79-year old man and about the pneumonia?

M r Quinn: It does not address that issue. It obviously addresses the issue of a patient - if you could just bear with me for a second - who is in a position where they cannot decide for themselves -

Mrs Hannan: But where they had a living will.

M r Quinn: I did not find anything specifically on that point

Mrs Hannan: Could I refer you to the BMA guidance where it says:

* Where a patient has lost the capacity to make a decision but has avalid advance directive refusing life-prolonging treatment, this mustbe respected.’

(Mr Quinn: Right.) So, I think that answers the point that

Mr Qntnn: Mrs Hannan, I entirely agree, and I think I have said that we support the concept of living wills. What I was really leaving with you to consider that - and this is not wearing my Hospice hat but really looking at it from a legal point of view, that there will inevitably still be difficulties, because if you give the rule of law, for example, to the living will and to adopt the BMA’s position there, which I think states the law, as it is, it would not cover the situation that I gave you as an example because there would be no choice. You would then have a situation where the nursing home would have to comply with the wishes expressed by that gentleman when he was 70 and compos mentis.

Unfortunately, as I say, the law cannot necessarily legislate for all conditions, especially when you are still trying to balance the law against medicine. The fact of the matter was that that gentleman, whether he knew it or not, in his unfortunate state at 79, had a pretty good quality of life, and if they had asked the patient’s family for their approval, or their view, they may well have said, ‘No, he is happy enough, leave him be.*

Mrs Hannan: This relates to the situation that you related, where it says that if a patient has lost the capacity to


96KCE SELECT COMMITTEE, WEDNESDAY, 23rd JUNE 2004 Oral Evidence

make a decision, but has a valid advance directive refusing life-prolonging treatment, this must be respected.

M r Quinn: I entirely agree with you. I am just flagging, as I have said, legally, I can see difficulties, because that situation, I have just explained -

Mrs Hannan: You are saying, in actual fact, that a living will means nothing?

M r Quinn: I am saying to you, Mrs Hannan, that we support the concept of a living will as being very, very useful to my care team, in deciding how best to treat a patient, and we should respect their wishes.

I am saying to you, then, as a lawyer, that I can foresee difficulties. That is my only point to you.

I am not arguing against them. I am just flagging, that . irrespective of the views of my team at Hospice Care, there are difficulties.

Mrs Hannan: Would it not be then seen to be an assault on that person, if action was taken?

Mr Quinn: Well, that is one way of putting i t I do not want to answer that, because that is really a legal issue.

M rs Hannan: It is a legal issue, that is why I am posing it to you.

M r Quinn: Yes, but I am not here as a lawyer.

Mrs Hannan: You did state in the beginning that you were a lawyer.

M r Quinn: I am a lawyer, Mrs Hannan. I am not here to advise you -

Mrs Hannan: I am not asking for advice; I am purely asking the position of a living will.

Mr Quinn: 1 have told you that as far as Hospice is concerned, we support the concept of a living will.

Mrs Hannan: Can I pose the question to you then: if someone was in Hospice receiving painkilling treatment, and had pneumonia, what would be the position of the Hospice?

Mr Quinn: With a living will?

Mrs Hannan: No, without a living will, with a living will, whatever.

M r Qninn; So, if the patient was in Hospice receiving painkilling treatment, and they then had pneumonia, then the doctors would consult with the patient as to his treatment, and the multi-disciplinary team, together, would decide on what was the best thing, with the patient part of the consultation as to what should happen.

Now, obviously, Mrs Hannan, that would then take into account the progress of the underlying disease from which the patient is suffering, and all other aspects to which I have alluded.

Mrs Hannan: Could I just ask about consent? (The Chairman: Yes.) When a patient enters hospice do they sign a written consent to say that they understand the treatment that they are going to receive and... ?

M r Quinn; Yes, but at that stage the consent would not say, ‘This is what is going to happen to you’ because that is not the way things work. The patient would come in... If you take it for respite care, that would be under a designed and agreed therapy plan. They would come in for symptom control, again, under a designed treatment plan.

Mrs Hannan: And they sign a consent for each of these (Mr Quinn: Yes.) issues? Is it possible for us to see a copy of the consent form?

Mr Quinn: Yes, but it will not say what I think you are trying to find. It will not actually specify, ‘You are going to receive this drug or that drug’ or whatever. This is just simply consenting to admission, to treatment and then the treatment follows on.

In a sense, you then have to go to the medical notes for a patient to find out what is happening, because we do not work in isolation. So, a patient, as you well know, effectively, in simple terms is transported, with their medical history, with the progress of their illness to date, the medication they have received, the treatment that be it consultants, or GPs, or whatever, are giving that patient, and that is the package. And then, you would move on, to discuss and agree with the patient, with their carers, with the professionals who are already part of the team for that patient, for the ongoing treatment

But 1 can certainly let you have the admission form.

Mrs Hannan: The actual consent. (Interjection) It is informed consent I am looking for. Is there informed consent?

M r Quinn: What do you mean by that? I am sorry. Obviously, a patient is informed, because they are part of the discussion as to what treatment they will receive.

Mrs Hannan: I can come back. Thank you.

M r Downie: Just before I put a question to you, I would just like to put on record my support for the hospice movement I think they do a marvellous job in the Isle of Man. Many of my constituents and personal friends have benefited from the service that is provided, and I just want to make sure that goes down on the record.

Mr Quinn: Thank you very much.

Mr Downie: Just to come back to the issue that Mrs Hannan raised with you, about the person in the nursing home, where they had indicated some years previously in a living will... Could I just have a view: what would be the situation if the family insisted that, while the father was still in reasonably good health, although he was a little confused on occasion, he was enjoying a good quality of life, they insisted that he receive medical attention,, or a course of antibiotics that would bring him through his period of pneumonia? Now, if the man died and the family made a complaint, I could see a large legal case entering out of that particular situation.



Mr Quinn: Yes. I am struggling, Mr Downie, to answer that from the point of view of being a lawyer and also Chairman of Hospice Care.

I do take the point which Mrs Hannan has made, that, certainly, the way the authorities are developing, weight is being given to a living will, and, in a sense, if the living will has been drawn properly, and is specific enough, the courts are tending to give credence to the express wish, in preference to the wish of others.

When you then introduce that element of the wish of others, as you have said, or the wish of the family, I would suspect - this is now moving into my realm as Chairman of Hospice - that the doctors and carers for that particular patient would have regard to the wishes of the family, and I would suspect that they would follow the wishes of the family.

I might urge, depending on how the law progresses, that, before they do so, they take legal advice, and if there was any particular issue, that they would have to go to the courts.

Now, I am not trying to make a meal of this, but that is to show how we could fall into this trap, potentially, of, perhaps, putting too much weight onto a living will. I believe that they are helpful. I personally believe that the law, as it stands at the moment, is sufficient and if you try to give too much weight to them, the sort of situation that I alluded to could arise, and in that siutation I personally believe that common sense ought to dictate, and you cannot, necessarily, legislate for that That is my personal view.

Mr Downie: The reason I asked you that was that 20 years ago pneumonia was a major killer.

M r Quinn: That’s right

M r Downie: Today, with modem drugs, you can treat pneumonia in probably less than a week.

I am interested in the comment you made about your staff, and regarding their views, whether they felt, with their vast range of experience with younger people with terminal illnesses... that none of those actually supported the introduction of assisted dying or euthanasia. I wonder if you could perhaps just broaden that a little bit more, and the discussions with them. They are the people in the front line.

Mr Quinn: They certainly are, and what you have got to remember is that our staff are involved really fromt the point of diagnosis, these days. As soon as someone is diagnosed with cancer, in the hospital, we have, at the hospital, a St Bridget’s Macmillan nurse, who specialises in cancer, and she is part of the treatment plan from day one.

That treatment plan obviously anticipates, if you think about it, the fact that you will get to the stage, unfortunately, with many cancers, where you are going to have to face the challenge of pain and suffering. But we can look ahead, we can plan for that, and so, I think, really, the important thing is that, because of the way Hospice Care has developed, and because it is getting closer to the point of diagnosis, we are then on the journey with them, we can anticipate, and, importantly, we get to know them, and so to that extent that is the reality of it That is why my staff are able to say to you that they have no knowledge of any circumstances, on the basis that these patients have been in receipt of our hospice care, of them wanting to either hasten their death

or, alternatively, to be assisted in their suicide.I cannot, really, say any more than that, but that paints

the picture of our involvement

Mr Downie: Thank you. Thank you, Mr Chairman.

Mr Rimington: Can 1 pose a question to you that was posed to us by a previous witness, which was the issue of the circumstances whereby a lorry had an accident and the lorry driver was trapped in the cab. The cab was burning, and there was no method of removing that lorry driver from the cab. The window was open. This hypothetical question took place in America, where the policeman was armed - all policemen are armed - and the lorry driver asked to be put out of his misery, rather than going through an agonising death.

Would you have any philosophical views on what the policeman should do in that circumstance?

Mr Quinn: The suggestion being that he should, as you say, put him out of his misery,

I have got to say, I cannot accept that he should be legally entitled to do that We do not live in a perfect world, where we can anticipate all sets of circumstances. There will always be an odd occasion, where the law cannot put right a wrong, and I can see, from that policeman’s point of view, a very, very good argument that his wishes should be adhered to, but I do not think, unfortunately for that policeman, that that individual circumstance, or the few circumstances that may arise, would justify changing the law, with all of the inherent difficulties that would then float from that

So, I think that is the reality of life, unfortunately, and I know that is not a very good answer, but that is how 1 would see it, personally.

M r Rimington: You have talked about the issue about one part of your philosophy is to be actively against the concept of assisted suicide in these end-of-life circumstances, and to accept that that might be an option would be an admission of failure of Hospice, in that you had not been able to provide to a sufficient degree the pain relief and suffering. If, medically, it was or could be accepted - and I am not a professional, so I cannot make this judgment - that despite all the best efforts of medicine, and all the care services that a body like Hospice might be able to provide - and I accept it is more than just medicine, and in no way wishing to say there are any shortcomings in Hospice, at all - there will be circumstances for individuals, there will be a percentage who will still suffer considerable pain or discomfort, or circumstances which they find totally unacceptable, whether it is a combination of pain or loss of autonomy, or whatever, why then, in those circumstances, provided there were sufficient controls within the law, should the wishes of those particular patients not be granted?

M r Quinn: Firstly, we do not accept that there will be a percentage where a patient’s pain and suffering cannot be controlled to an acceptable level. So, I think that really, is the Hospice position or answer to that. So, in a sense, from our point of view, it is a non-issue. That is our experience.

My view is that what ought to happen is that there should be more effort made by Government to develop palliative care services, and to the extent that if Hospice and others providing palliative care have any shortfall in being able to address the issues, to ensure that that does not happen, that



that is something that should be looked at.

M r Rimington: Having been given your numbers on your admissions and the number of people on the books and the number of people who are in-patients or in-home patients- and I think we could be on fairly common ground here, widely speaking - if we were to look at the countries, or in the case of Oregon, the state, where voluntary euthanasia, with whatever shortcomings, has been permitted, the numbers, if you scale those down to the Isle of Man context, just on a statistical, mathematical basis, then the numbers are in the region of one handful, give or take. So, would you accept that, if that was the case, if the number of patients in the Isle of Man in any one year who might wish, or might ask, to go through that process of assisted suicide would be in the region of, statistically, around five - and it is not going to be a hundred, it is going to be in that sort of order - would that undermine your activity, given that most of those people would already have been involved with palliative care, anyhow? It is not an alternative to palliative care.

M r Quinn: I think I understand the point you are making but, as I want to make it clear, we are not concerned that the concept of euthanasia or patient-assisted suicide undermines Hospice Care. Our concern is for the patient, when you talk of introducing euthanasia or patient-assisted suicide as an option. Our concern is for our doctors and for the medical profession, generally, when you suggest to therrt that they have a duty to deal with their patients, and offer them the option of euthanasia and patient-assisted suicide.

So, do not get me wrong, Mr Rimington: I am not here saying to you ‘Do not bring it in because you are going to damage Hospice Care'. I am saying to you: it is so contrary to the ethos of Hospice Care and our views on what palliative medicine can do, that it would be wrong to introduce it-bu t not to undermine us. We will continue to offer palliative care, we will continue to develop our service, we will become more expert at it, as time goes on, whether or not euthanasia or patient-assisted suicide is available, but what it will not be: it will not be offered as part of the Hospice Care service.

M r Rimington: No, I just want to say ‘offered’ is probably the wrong expression. Also, that if there was a change of law, it is not a duty. It would be permissive, as it is elsewhere, in the sense that any -

Mr Quinn: There are contrary views on that, and I am not here to argue the contrary views.

M r Rimington: No, but I am just saying where the legislation exists elsewhere, rightly or wrongly, as you might argue, it is permissive, in the sense that no medical practitioner is required to offer or undertake or be involved, in any way, with that procedure, if they do not wish to do so. So, it would not be an imposition on any medical practitioner. That would be the issue there.

Mr Quinn: I hear what you say in that regard. I am aware that that is not the view which is being submitted by the Association for Palliative Medicine and National Council for Hospice and Specialist Palliative Care Services in the UK. But that is their view, but I am not here to argue that. They see it -

Mr Rimington: Well, as a man of law, I think you

will respect that there is a degree of clarity in law, and that legislation on this matter, where it exists, is quite explicit and, irrespective of the view of any particular body, the law is the law.

M r Quinn: Yes, I appreciate that, Mr Rimington, but the law is also open to interpretation, and the interpretation of those particular bodies I have mentioned, they put forward the view - which I neither support or object to, but I merely mention — that the law, in those jurisdictions where euthanasia and patient-assisted suicide has been introduced, has imposed on a doctor a duty. It has shifted what we all understand to be a doctor's genial duty of care to the patient, to the extent that they are in a duty to assist in a patient's suicide, if that is an informed wish of the patient. I am not putting that forward. I am just saying that there is a contrary view to what you have said.

I can give you a copy of that paper, if you wish.

M r Rimington: Yes, 1 just make the point People will make their views according to their -

M r Quinn: Absolutely. I am sure you have heard that view, or if you have not, I am sure you will.

M r Rimington: I could go on, but I am taking up the time.

M r Anderson: Thank you, Mr Quinn.First of all, thank you for your comprehensive explanation

of the various roles that Hospice plays in different situations. I think that has been very helpful to the Committee.

Can you confirm that the guidelines that the Isle of Man hospice works to are basically the same as what happens in hospices in the UK? You referred to hospices outside the UK working to different guidelines. Can you confirm that St Bridget’s - ?

M r Quinn: We work on the UK model, yes.

Mr Anderson: Moving on, then, to treatment plans being discussed with patients going into Hospice, once the patient is not able to deliberate, and talk about those treatment plans, is that then extended to the next of kin and family?

M r Quinn: Yes, we follow - which is a very useful book to read, actually - The Withholding and Withdrawing of Life-Prolonging Treatments, Good Practice and Decision Making. That sets out in very clear terms, how a doctor would approach this, and I will supply a copy of that, because it is very useful.

Mr Anderson: Thank you. Moving on again then: we have learnt a lot from you this morning - do you think the general public who have not had personal experience of St Bridget’s Hospice are well enough informed about treatment paths, and the role of Hospice in various situations?

Mr Quinn: Mr Anderson, that is a difficulty I always face. I do my best to try and ensure that the public are informed, because there is a misapprehension. People still believe that Hospice - it is sometimes the ‘H word*, as they say - is a word that you do not utter, because it is simply a place where you come to die, and I have issued press releases,



I have done articles, I have done as much as I possibly can, to inform people that that is not the case.

I take your comments, which I respect, that we still are not getting the message over, and I will take that thought back with me, because we still need to do more, but we are trying.

Mr Anderson: Thank you. Can I just move on now to recruitment of your staff for Hospice. Presumably, you recruit nationally to Hospice, as well as local people, maybe, moving from the hospital situation into Hospice -

Mr Quinn: Yes.

Mr Anderson: - and we had heard evidence before from both the Medical Society and the Council for Nursing and Midwifery that» in fact, if legislation on the Isle of Man came in that was different to legislation in the jurisdictions round about, it could have a detrimental impact on attracting people to the Island, if we were the only jurisdiction, as you said, in the British Isles. Do you think that would have a detrimental effect on your ability to recruit?

M r Quinn: Without a doubt Whichever way you look at the outcome of the surveys which have been carried out, the numbers of doctors - just focusing on them for the moment - who would be prepared to become involved in euthanasia or patient-assisted suicide, in percentage terms, is very small, and if we were, as a jurisdiction, to legalise that and to invite doctors to come here, whether or not they consider they are under a duty or not but they still see this as a jurisdiction offering that as a treatment option, we are going to have difficulties.

We have difficulties, like the hospital, in recruiting. We, like anybody else, have to have in mind our control of employment legislation, so we have got to look on-lsland first and as a second resource we look off-Island. This will only damage our ability to recruit, and I do not think there will be any doubt about that whatsoever.

If we want to put the Isle of Man on the map, as far as this is concerned, we should put it on the map as being an area that is investing in specialist palliative care treatment, not in this.

Mr Anderson: Thank you. Maybe moving on to talking as a lawyer, now. Mr Rimington gave you an example of an extreme situation that the Committee was given, as an example at our last hearing - obviously, this example was given in America. Do you not think that making the legislation for extreme cases is dangerous, and that in that particular set of circumstances, if the policeman felt compelled to take action himself, would not that then be interpreted by the courts to make a decision on?

What I am saying is: do you not think we cannot legislate for every conceivable circumstance and are there not legal procedures that would flow from a decision being taken in those circumstances?

Mr Quinn: Right, if you look at that example, we can assume that, technically, he is guilty of manslaughter, at the worst if not murder. I suppose murder because he did form the intent to actually end that person’s life, which his illegal; but let us give it manslaughter because he did not set out with the intention to do that Leave that to the courts to unravel,

because they do not have to send him to prison. You have heard of your crimes of passion in other jurisdictions, not necessarily here. That is perhaps one way of looking at it Look at the courts’ sentencing powers in circumstances of that nature, but do not alter the crime.

Mr Anderson: Right thank you. I think that is all I have got, Mr Chairman.

The Chairman: Okay, thank you, Mr Quinn. Could I echo the comments of my colleague Mr Downie in wanting to acknowledge the very good and the valuable work that the Hospice does, and I hope that you will not construe any of the questioning as critical of that work in any way.

Effectively, you began by describing that Hospice on the Isle of Man operates as a company with charitable aims and, therefore, any policy changes that we have touched on today would be matters for yourself. (Mr Quinn: Yes.) So, there would not be any question of an imposition of policy changes. That would be a matter for yourself to determine, as you see fit

M r Quinn: That is correct.

The Chairman: You also touched on ia number of occasions on the purpose of Hospice is to maximise quality of life for patients until they die, and, as part of that, there were issues about not being service-led, as you described in other organisations, but veiy much being person-centred. (Mr Quinn: Yes.) Would it be fair or unfair to characterise the issues of autonomy, dignity and choice are ones that you hold dear?

Mr Quinn: Oh, yes.

The Chairman: But you stop the line at that choice to intervene for a premature end of life?

Mr Quinn: That is correct It has got to be viewed in the context of what is on offer, and, obviously, legally, we would not be able to offer euthanasia or patient-assisted suicide at this stage, so it is not there, and to take what is possibly a ridiculous example, because I mentioned it, we do not offer a heart transplant But certainly, yes, the choice is there, within the context of what is on offer.

The Chairman: But if the law did allow - if we had the Oregon example, take that as a scenario - that that choice would be extended to patients, you do not foresee that Hospice Isle of Man would embrace that?

Mr Quinn: No. Sorry, I do not see that we would.

The Chairman: Do you want to add a bit on why that would be the case?

Mr Quinn: Well, very simply, I have already explained to you that, from our point of view, we do not accept that we cannot get pain and suffering controlled to an extent that is acceptable to the patient, and if you look at our ethos of maximising their quality of life, to enable them to live until they die naturally, to actually introduce an element of choice where they could hasten their death, or whatever, would be completely contrary to our ethos. That is not something we would offer.



The Chairman: If 1 can touch on the tension, between putting the client at the centre and their choice and their autonomy, but not extending it to hastening their death, you are only allowed to make certain choices but -

Mr Quinn: But as I have said to you, it is in the context of what is on offer, and that would not be on offer. Their autonomy and their consent for treatment and their options, their choices, can only be in the context of what is on offer. We do not offer, for example, resuscitation, and that is very clear from the point of admission. It is not on offer.

The Chairman: I think perhaps some people would be surprised that, primarily, Hospice is a cancer treatment service. What cases would there be where people would not be eligible to come into Hospice? What conditions might not be able to be treated?

Mr Quinn: For non-cancer patients, we would treat people, as I have said, who are at the end of their journey, but as I have explained to you, at some length, as far as cancer patients are concerned, we are very much there, really, right from the start, from their initial diagnosis, and, to put it very glibly, every other condition, other than cancer, we are not there.

Now, if you take an example - and here I am moving into an area that I do not know much about - but let us say you have a respiratory disease, and you are diagnosed with that respiratory disease, you are told it is going to get worse, and you are told it is going to end up in your death, whenever that is going to happen, I would like Hospice Care to actually get involved sooner than simply the terminal stage, but we do not have the resources to broaden the care that we can offer, and it is as simple as that There are gaps in what we have on offer, and that is all I can say. We cannot do everything.

The Chairman: But as far as the anecdotal advice you gave us, over 2,500 patients over 21 years -

Mr Quinn: Yes, a good 90-odd per cent of them would be cancer patients.

The Chairman: Yes, and you told us that you believe that you have managed the pain in all those cases to the patient’s satisfaction.

Mr Quinn: To the extent that none of them have asked for their death to be hastened, or for assisted suicide, or whatever.

The Chairman: Might that be because it is not on offer and, therefore, it would not be the general reality?

Mr Quinn: Right, well, then, you have got to come out of the Hospice Care experience, because presumably those who are advocating euthanasia and patient-assisted suicide are saying that there are patients out there asking for i t I am telling you our experience here, for those under our care, is that they are not asking for it

The Chairman: And just finally, I am sure we all concur that investment in palliative care is something to be welcomed. However, would you tell us that, with the best will in the world, every case can be managed purely by

palliative care, through whatever discipline, and that there will not be cases of people whose pain, or whose fear of pain, would be so intolerable, so unbearable, that they would, as we have seen in other jurisdictions, make informed requests for consideration for a hastening of their early death?

M r Quinn: I do not know whether you can draw a comparison with other jurisdictions, in that example, because to do so you would have to look at what palliative care services are available there.

In one of the papers I have read, in Holland, for example, where we all know this was introduced, in recent years, they have started to invest in palliative care services and, as a consequence, the number of requests for euthanasia and patient-assisted suicide have reduced significantly. So, that is an example of how... I cannot really give you a meaningful answer to die question, other, than this is a quote from the experience of others. If you invest in palliative care, the requests for euthanasia and patient-assisted suicide would seem to be reducing, or would reduce.

The Chairman: Cause and effect (Mr Quinn: Yes.) What I would like to do, Mr Quinn, is turn to my colleagues, to see if there are any more follow-up questions and, then, perhaps, to yourself to summarise maybe. Mrs Hannan.

Mrs Hannan: Can I just return to: you mentioned about the wishes of the family in regard to treatment for a patient and in relation to a living will. The living will says one thing, and the family wishes are something else, which is, in your reckoning...I took it that you said that the family overrode the living will.

M r Quinn: No, I did not say that, Mrs Hannan.

Mrs Hannan: You did not; that is fine.

Mr Quinn: No.

The Chairman: I think that exhausts our side, Mr Quinn. Have you any summary you would like to conclude with?

Mr Qninn: I do not think so, Mr Chairman.I think I would just like to say one thing: in the same

way that you have commented, I hope that I did not take any questions, or whatever, as an attack against Hospice Care or our services. I think, what I would like to say is that whatever 1 have said, I would not want those promoting euthanasia to consider that I am doing anything other than putting forward our suggestion that the difference between us is simply the means by which we treat pain and suffering.

I do not believe people promoting euthanasia are doing anything other than, again, realistically from their point of view, but I believe misconceived, arguing that they do not really have any other motive. So, our point of difference is the means by which we deal with pain and suffering, and I accept that And I hope that nothing 1 have said would be misconstrued, either.

The Chairman: Thank you very much, Mr Quinn. I think, while you get your papers sorted, we will have a five- minute comfort break and come back at 12.05 p.m.

Mr Quinn: Thank you.



The Committee adjourned at 12.00 p.m. until 12.05 p.m., when Dr Huxtdble was called.

Procedural

The Chairman: We are on Manx time, so just five minutes slow is not too bad)

Dr Huxtable, welcome to the Isle of Man, I do not know if this is your first visit here. Sorry you have not brought better weather but I hope you have managed to see a bit of the Island.

Dr Huxtable, first of all, we will do the introductions along the table: starting to my left is Mrs Hazel Hannan; Mr Alex Downie, as you can see; John Rimington; I am Quin tin Gill, I am the Chair, the Caairliagh; and Mr David Anderson. We are all members of the House of Keys Select Committee, and we have Mrs Cullen who is one of the Clerks.

We are being recorded for Hansard, so, perhaps, if we have any indication from our colleague that there are any difficulties, we could just be ready to stop and reconvene, but, hopefully, that will not be the case.

Dr Huxtable, the form we have adopted with other witnesses is to offer you the chance to have an introductory preamble, and then go into questions and answers, and then to yourself to summarise, if that would be okay?

Dr Huxtable: Yes, that is great.

The Chairman: So, perhaps, if you could introduce yourself, your background and qualifications, perhaps, and then we will leave it to you.

Dr Huxtable: Certainly, yes. Well, many thanks for inviting me along.

I am Dr Richard Huxtable from the University of Bristol on the mainland, and my current post is a lecturer in Medical Law and Ethics. It would probably help to give you a little background: I approach this topic and my current post from a law perspective, so I do actually have an LLB (Hons) Degree from the University of Nottingham, and it was during that that I first became interested in issues around medical law, medical ethics, and from that I undertook a Masters in Socio-Legal Studies at the University of Sheffield. As part of that, I first looked into euthanasia in detail, as part of the dissertation component for that degree.

Thereafter, I developed that dissertation into a PhD dissertation thesis at the University of Bristol, where I have remained since 1996. So, I would say I have been looking into this issue on and off for around 10 years or so.

So that is essentially my background; is there anything further you require in that regard?

The Chairman: Thank you, that is very kind.

EVIDENCE OF DR R HUXTABLE

Dr Huxtable: Okay, great As I say, many thanks for inviting me along. I have jotted a few notes as to my position, and this is largely the position that 1 did adopt in the PhD thesis.

As, perhaps, a health warning at the outset when I first came into the topic, I was, at that point - and I am talking about 10 years ago - quite pro voluntary euthanasia, in principle. But increasingly, on reading the literature and discussing with colleagues, including colleagues involved in palliative medicine, I became increasingly concerned that this was not the right way for the law to go. And by ‘the law’ 1 am referring very explicitly to English law in England and Wales, because that was the focus I took in the thesis.

There was a comparative aspect, so 1 did look at legislation in the Netherlands to some extent, but, primarily, most of the comments I am about to make will relate to, as I see, English law as it currently stands, and some of the pitfalls with its current position.

So, in a nutshell I do believe there is a case for reform, but I do not personally, believe at this point in time there is a case for pro voluntary euthanasia, or pro assisted suicide reform. I prefer much more of a middle ground, if you will, which 1 will try to sketch out in a moment

On beginning the thesis, I attempted to look at the main ethical principles and precepts that influence the law in the area, and I arrived at, mainly, three, and I think these are three that are generally seen to exhaust the field, regardless of one's ethical stance on this issue, or in terms of ethics, generally.

So, I noted, with regard to the earlier witness, that you referred to concepts such as respect for patient autonomy: that is clearly a key principle in English law, as it stands. You referred, also, to the 'quality of life’ reasoning, and I will explore that in a moment. And there is also, 1 think, still very influentially in English law, the notion of the so-called * sanctity * or ‘inviolability ’ of life.

Now, ‘sanctity of life’ sounds a rather theistic phrasing, it does sound rather theological, but English law does have that underpinning, and some of the more Roman Catholic doctrines do appear to still influence the way English law is.

I think one starts to see that English law is attempting, as things currently stand, to cleave to all three of these, and, as a result has resulted in rather a mess. And we can see the mess, if I sketch out some of the answers we have currently got, such as they are.

So, with regard to respect for autonomy, it is permissible and, in fact, it is mandatory, for health professionals to stand aside, if the patient says no to treatment, or ‘no more treatment’, provided, of course, that the patient is competent Now, some commentators would term that a form of euthanasia, which 1 am sympathetic to; some would term that ‘passive voluntary euthanasia*. The patient is saying no, with reference to the quality of life that they currently have. That sounds a bit like a euthanasia-style decision.

But, of course, with regard to autonomy, English law still will not go to the ultimate extreme and allow active voluntary euthanasia and/or assisted suicide, as recently seen with the Diane Pretty ruling.

The problem I have there, though, is that English law rehearses two pieces of rhetoric, really: it will say that euthanasia is murder and will be treated as such, and it will also say that doctors and health professionals will not be treated any differently from members of the public. And I found, on looking at as many of the decided cases as possible, so actual trials that have occurred, there have been, off the top of my head, I think it is seven health professionals prosecuted in this sort of domain, that are recorded prosecutions, and

ProceduralHouse of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable


only one of those resulted in a conviction.So, clearly the second part of the mantra just does not

hold true, because anecdotal evidence, at least, would suggest that doctors are doing this - perhaps not in great numbers- but there are suggestions that euthanasia and assisted suicide are occurring.

So, that starts to suggest to me that, in this regard at least, English law is willing to recognise an excuse can be created or perceived - in other words: ‘this is a form of killing, but perhaps it is not such a bad killing, so we are going to excuse doctors if they do so, we are not going to take a really hard look at the facts, and we are certainly not going to prosecute or convict - very rarely*.

With members of the public doing so - by that 1 mean relatives primarily assisting their relatives to die in some way - you find that there are very many cases. I looked at over 100 or so, in which, again, the rhetoric of prohibition is not actually being given substance in fact, because most of the prosecutions will be for murder, but in virtually all bar, I think, approximately four cases I found, murder is not the ultimate conviction. A conviction is made, but it is usually made for a lesser offence, such as manslaughter by virtue of diminished responsibility.

Many of the legal commentators, and some of the ethical and medical ones, acknowledge that this is a fudge, that many of these defendants are not enduring or suffering diminished responsibility - whatever that means, and there is a big literature around that in itself. So, again, we appear to see notions of excuse entering into English law, in the way that these cases are dealt with.

With regard to the ‘quality of life’ reasoning that I said I would return to, I think that that sort of reasoning is entering into English law, although some of the judges would deny this. I am referring, in particular, to some of the cases where treatment has been lawfully withheld or withdrawn from very young children, and also adults, in a permanent vegetative state, such as the case of Anthony Bland. The judges there bandied about notions of the ‘sanctity of life*, but deemed that an inabsolute principle, but resisted, at least on the face of it, the notion that this was valuing or a valuation of Anthony Bland’s life. They resisted the message that this life was perhaps not a life worth living.

Well, I would suggest, and I think a number of commentators from varying perspectives would suggest, that sort of reasoning was, really, what was occurring there. So, one has to query how appropriate that is, and how far we ought to go with ‘quality of life’ reasoning.

So, that is just a sketch of some of the problems, as I have seen them, and, as 1 say, a number of other commentators, whether pro-euthanasia or anti-euthanasia, have also seen them.

What I would currently favour, particularly in view of some concerns I have with taking in one of these principles too far, I would currently favour a middle-ground position, where we at least clarify what is really going on.

One of the major proposals I would make, and I will actually be writing about this over the summer, is for a reduced offence, or partial defence, if you will, of mercy killing - or assisted death, call it what you will. It will need specification, but the idea would be that we would bring into the open what is currently going on behind the scenes, and that which is actually not sufficiently well promulgated on at the moment - that is, that the judges are tacitly creating this mercy killing offence or partial defence, but are resistant

to labelling it as such. I feel that, in terms of openness, transparency and the like, is not entirely legitimate.

So, I would bring that into the open, and also clarify a number of the other laws that currently exist that still pose difficulties for health professionals and patients alike. For example, the doctrine of double effect, which I would assume the Committee is familiar with: there appear to be difficulties with a number of the cases in which that doctrine has been relied upon. A number of the doctors in issue, it would seem, really, on a closer analysis of those cases, did not have the pure intention, and, yet, they were still enabled to invoke this doctrine of double effect.

I am thinking, for example, of Dr Bodkin Adams in the 1950s, and I do not know if the Committee is aware of suggestions that Adams actually was a serial killer, he was allegedly a mass murderer. The prosecution was initially brought... is it worth me dwelling on this point? Would that be helpful? (Mrs Hannan: Yes.) (Mr Downie: Interesting.)

The prosecution was initially brought because Adams had inherited under the wills of two patients. He was prosecuted over the death of one patient, with the suggestion that if there was a conviction there, they would prosecute over the death of the other. He had inherited a chest of silver and a Rolls Royce from this patient And the judge, although he could not formally take into account motive - because murder, as it is framed, is all about intention, so what you are aiming a t rather than why you are aiming at it - he did refer this to the jury and said this is too ‘paltry a reward for a respected GP to risk* the death penalty at that point

Then in 1983, at the point at which Adams died, and the law of defamation no longer applied, the Chief Constable who investigated him said that the prosecution case was hampered by blunders throughout and that Adams actually inherited under - 1 think it was - 138 wills, throughout his practice. So, the suggestion was very much that this was a serial killer, albeit allegedly, the serial killer who introduced the doctrine of double effect which is supposedly all about pure intentions, into English criminal law.

So, I, on that point would prefer to see, actually, a comprehensive Act of Parliament dealing with all of these issues: withholding, withdrawing, double effect when it applies, when it does not apply, what it really means, what is a pure intention, supported by a code of practice, and the like - comparable models would include the Mental Health legislation, for example, where there is a code of practice; the Human Fertilisation and Embryology legislation as well, again, a code of practice, and also advisory bodies exist

A related concern I have is that this is an area where the area is replete with guidance documents - you have documents from the nursing bodies, the doctors’ bodies, I believe the dieticians in the UK are working on a document’ as well - and, although they are generally uniform, one can perceive slightly different phrasing in some circumstances, there are some contentious documents, including the one relating to ‘do not attempt resuscitation’ orders.

So, I would suggest, with,appropriate consultation, with every involved person, including lay persons, that it might be better to remove all this inconsistency and ad hocery, and have one uniform system. I think that that is perhaps a little long-winded, but that is my position, in overview.

The Chairman: Just on that point: can I ask you what your assessment of the professional and political will

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Dr R Huxtable


commitment there is to consider legislation or codes of practice, as you have just mentioned?

Dr Huxtable: The evidence I can draw on - and this is not strictly from bodies like the General Medical Council and the British Medical Association - refers to a number of surveys that were published in the Journal of Medical Ethics that point to health professionals of varying disciplines saying that they would prefer to see a consistent set of guidance, so I am more drawn along that information.

As I understand it, they were relatively small scale studies, but it might be an area for further research, in fact, particularly approaching professional bodies themselves, and seeing how they would favour it

If I could add one brief point on this, there was an interesting - now, I think I can do this without the document- reference in a paper on the advent of clinical ethics committees which are becoming increasingly established across the UK, and in that paper it was suggested that such guidance documents would actually assist on the ground, and .clinical ethics committees could have a local input in giving local substance to such documents, so there is a feeling of ownership of the moral and legal principles at stake.

Then there was a rebuttal in one of the papers saying, ‘We do not really need further guidance from a clinical ethics committee, or even further guidance documents; they say enough’, and they footnoted and referred to a document from the British Medical Association, which claims to be pretty comprehensive, but pretty clearly early on in that document it does say ‘the law is not clear in this area hence this document’, so we are kind of going in circles, I would suggest We are being told the documents help because the law is unclear, but the documents are saying the law is unclean it is almost tautologous.

The Chairman: And the political will to promote this sort of legislation: do you think that is around?

Dr Huxtable: I would anticipate, once I publish on this, resistance from almost all sides, particularly with regard to the mercy killing offence proposal. I feel those in favour of voluntary euthanasia would feel it is a fudge, it is just moral cowardice, it does not go far enough. The professional bodies might feel that it actually undermines their protection of life.

But that is just a prediction: 1 could not say for certain where they would stand on that

M r Anderson: You mentioned this incident with this doctor, in the 1950s, I think it was: have you got any modern- day examples where a doctor has given treatment with the double effect and has been prosecuted as a result?

Dr Hoxtable: Yes, there have been a number of more recent examples. And I need to be appropriate in my phrasing,

I am also concerned about a more recent prosecution in the late 1990s of a GP based in Newcastle, Dr David Moore, who, as I understand it, from the contemporaneous media reports - and that is, unfortunately, what I need to rely on, there is no published transcript of the trial - Dr Moore said in the local media, in Newcastle, that he had killed 300 patients throughout the course of his career and, again, as I understand i t he allegedly stated that he would be prepared

to defend that if he were prosecuted.So, ray reading of that was: he would be prepared to say,

‘Voluntary euthanasia is perfectly permissible. The law is an ass in this context, and I should not be prosecuted’.

On arriving in the courtroom, however, his defence was very much one of the doctrine of double effect, and the judge did accept that A close look at the evidence, one of my colleagues has suggested to me - and this is a colleague who has worked in palliative medicine - suggests that the GP may not really have known what he was doing, with regard to morphine and diamorphine, so that may raise an ancillary issue with regard to appropriate training in techniques in palliative medicine.

As I say, I have to be cautious in my phrasing, as much of this relies on the contemporaneous media reports, which are by no means comprehensive.

Mr Anderson: Dr David Moore is actually my uncle, but I do not think it is the same one, fortunately! (Laughter) So, we will move swiftly on.

You have had no personal experience yourself in medicine; it is just purely on lecturing on...

Dr Huxtable: Yes, that is right

Mr Anderson: Right, nothing from me at the moment thanks.

Mr Rimington: I think you joined us, at the back after I had given my question about the policeman in America: did you hear that?

Dr Hnxtable: No, I did not.

Mr Rimington: For fairness, I will repeat it to you. This was put to us by a previous witness, speaking from an ethical point of view, or raising the issues from an ethical point of view, of a lorry driver being trapped in the cab of his lorry when it was burning, he could not possibly escape, and the policeman, being in America, was armed. The window was open: he asked to be put out of his misery - ‘Don’t let me die like this!’ What should the policeman do?

But with the previous witness I did not ask him: there was a further question, actually, that he had posed, which was what would happen if the window was actually wound up, so although he could see the policeman and was shouting at him, he could not tell what he was saying. What should the policeman do? So, can I just pose those two at you.

Dr Huxtable: Excellent questions! (Laughter) I will not have excellent answers, I am afraid.

I think I will refer back, in a vain effort to fudge the answer, to a comment that Mr Anderson made earlier about the nature of hard cases making bad law. 1 would see that as one of the very hard cases, and I think, very much, my personal humane response would be to put the person out of their misery.

But that is my difficulty: as I say, at the outset of my studies, I was very much in favour of voluntary euthanasia, because 1 was swayed by such hard cases. Now, whether that is an entirely humane response in itself to say, ‘Okay, I can see your plight, but I am not going to allow it, because it would set a rule and the rule is dangerous’.

I feel there is a difficulty there in terms of, as I say,



common humanity, but, having said that, I feel that there are dangers associated with: if we make an exception in this case, how many exceptions are we about to make?

In that regard, maybe I could raise another very difficult case that is one that, again, has sharpened my thinking on this, and has increased my resistance to any form of legalised voluntary euthanasia. This was a case from the Netherlands, that I am not sure if the Committee will have had raised yet- as I understand it, it has not been very widely reported in this country, and we are still relying on the Dutch reports. It is the case of Edward Brongersma; his GP was Dr Philip Sutorius.

M r Rimington: It does not ring a bell.

Dr Huxtable: No. Brongersma was a retired senator, in fact, who was, I believe, 80 years of age. He was ‘tired of life* - that was simply it. He had no physical or mental suffering, as such. As I understand it, he had been assessed by psychiatrists: they found no underlying mental disorder, and it was felt that this was just a patient who was tired of life, and he said such things as, ‘death has forgotten me*.

He approached his GP, Dr Sutorius, who did actually provide pills which Brongersma later took. And it was felt by Sutorius that he had complied with the Dutch 'due care* criteria, because this was, in his words, 'unbearable suffering without prospect of relief’. It was suffering in old age, he felt death had forgotten him. There is no way that medicine could provide any alternative^ or any way of alleviating that suffering, but perhaps counselling support and the like could have been provided.

But it was also at his request, so it did look, prima facie, like it complied with all the requirements, particularly as there was reference to terms such as ‘unbearable suffering’. Suffering is notoriously subjective: I would suggest that it need not be tied to a medical complaint.

And that is the difficulty I have. Now, in the event, the courts in the Netherlands went back and forth on whether this was a permissible operation, or use, of the legislation, and they, ultimately, declared that this was not permissible, and that this could not occur again.

But that is not to say that Sutorius was struck from the register or imprisoned; rather, effectively, he was chastised, and then allowed'to go back to practice.

Now, as I say that is as I understand it, and this is from a colleague who is Dutch and has accessed some of the, again, contemporaneous media reports, so that may not be the entire stoTy, but I think, on those facts alone, it is troubling, because it makes me go back to the outset and challenge what is going on. If we are, for example, to legalise voluntary euthanasia, then that must be premised, primarily, on respect for patient autonomy, but also due regard for quality of life, and the patient’s assessment of their quality of life.

In order to put that in law, you have to use phrases like ‘unbearable suffering’, ‘persistent request’ and the like, so I would suggest that any legislature that is looking at the issue, including the Committee here, of course, would need to think at the outset: ‘What are we going to disallow? Where are we going to draw boundaries? Are these boundaries actually going to stand up to critical scrutiny, or are they just going to be arbitrary stops on the road to full respect for autonomy?’

So, sorry to answer your hard case with another hard case! Is that a helpful answer?

M r Rimington: Yes, everything helps. We are swimming in a difficult sea, and so all views and opinions are useful. And I do believe, actually, somebody else - not to the same extent, and so well as yourself - had referred to that case, as a previous witness, now that you have explained it.

One of the things you did talk about was: there are a number of individuals - relatives, family members - who have helped their loved ones to go, and have been prosecuted. Now, presumably you will have seen the evidence put forward by the Voluntary Euthanasia Society that, of those people who had been prosecuted, or legal action had been taken against them, for that very action - what they would consider a mercy killing, if you like - a significant proportion of those people, those family members had then suffered trauma, (Dr Huxtable: Yes.) to quite a high degree, and that had led to suicides, in some cases, but also just that general level of trauma.

Now, can one lay that all on the legal process - the trauma of going through that legal process? Well, there are two traumas involved, and I am just feeling for your view on the balance. Obviously, to be involved with somebody who is dying, under any circumstances, with a loved one, is traumatic; to have to be party to taking active steps yourself would be a further trauma, and, obviously, then any involvement on a legal basis after that would be a further trauma as well.

I do not know: how do you see that conundrum, and how would your proposals deal with that?

Dr Huxtable: That, again, is a very good question, and one that I have attempted to give a lot of thought to, and I have been concerned that my proposal would keep in the dual message of: ‘This was wrong, but it was not too wrong’. And the ‘this was wrong’ component, undoubtedly, will add to the trauma that will already be there from the involvement in the person’s death, in a loved one’s death.

What I would hope to propose is exactly what some of the judges, but not all of the judges, are currently doing in these cases: I would say, in these cases where it is genuinely made out it was a well motivated mercy killing, with appropriate hoops jumped through, if you will, they are offering a sentence such as probation with a counselling component

Now, quite how good such services are I do not know. I do not feel qualified to say, and this is part of the thing I will be looking into, later this summer, just to see if that is at all feasible, or if, in fact, they should be moved into a slightly different box.

But I still feel that something can be done to respond to that, and the police could be appropriately briefed with regard to it. It has interested me that quite a high number of the media reports covering these cases, where the defendant has been willing to speak to the media, they have said, ‘We were dealt with fantastically by the police, Social Services and the like*.

So, I would hope - it might be rather idealistic - that ways can be designed and, actually, put into practice that will actually minimise any such trauma.

I realise it does not go to the full extent of decriminalisation, or full permission.

M r Rimington: So, in fact going to that extreme, the trauma is not by the way, generally speaking, the police have handled the issue, but just by the fact that it is being handled.



Dr Huxtable: 1 think the trauma is part of the whole process, no matter how well motivated and appropriate the police might be, in the way that they deal with the accused, equally no matter how well the judges and the courts deal with the accused, there will be some trauma attached to that and that may, perhaps, be unavoidable.

As I say, it is something that I do want to look into further, just to see if this is a viable proposal, but that, unfortunately, will be a bit later this summer.

Mr Riimngton: And I presume you will - 1 am sure you will - have seen Lord Joffe’s Bill, or the new version of it: what do you find difficult or unacceptable in that?

Dr Huxtable: Unfortunately, 1 do not have a copy in front of me, and when last 1 read it, it was a few weeks ago. I think there are concerns related to the terminology - just how we are going to set this down and how the lawyers are going to interpret it - it sounds like distrust of the lawyers, I am afraid, from someone legally trained, so 1 should be very careful, indeed - but I noticed, also, in the remit that I was sent along, the remit of the committee, that similar sorts of phrases recur, so could I perhaps refer to those phrases?

It is phrases like ‘enabling a competent adult* - who is competent? Why just an adult? If competence and autonomy is the key, then why not extend it to the minor, who is also perfectly competent to take decisions with regard to their own health and welfare.

‘Suffering* is there again, 'as a result of a terminal or serious physical illness’ - well, I query what ‘serious* is. There has also been the very flippant suggestion in some of the literature that ‘life is a terminal disease*-now, of course, that is far too flippant, but it does begin to show how open to interpretation all of these are. And, perhaps, they could indeed be made workable along certain lines.

My concerns are that some of the phrasing that still recurs, for example, in the Netherlands... I understand that opinion is split as to whether the Netherlands is a safe system or an unsafe system. There is enough there, at the moment, to concern me, but, again, I will actually be going to the States, later this summer, to look into Oregon in a bit more detail, because, at present, 1 do not actually have enough information on the Oregon system.

So, it could well be that my practical objections might drop off; my principled concerns would still remain, though, I think. But we would have to see how far, for example, we want the principle of autonomy to go.

Mr Rimington: My very last question is, then, if you are going to Oregon, and we are not - ? (Laughter)

Dr Huxtable: Well, I will actually be in New York.

M r Rimington: Oh, right, okay. (Interjection by Dr Huxtable) Could you, if you do glean any information from whatever - both points of view, we are not... whatever - we would more than welcome -

Mr Anderson: Could you take Mr Rimington with you? (Laughter)

Mr Rimington: ‘And leave him there*! (Laughter)

Mr Anderson: I didn’t say that! (Laughter)

Mrs Hannan: You inferred it, David!

Dr Huxtable: I will do, certainly.

Mr Rimington: Thank you.

Mr Downie: I have a couple of questions I wanted to ask you. You intimated, during your dialogue with us today, that this is an area you have been involved in for some time, and then you broadened it out by suggesting that there were people in the medical profession who had, for whatever reason, assisted people to die. And you thought that when the issues came before the courts, they were perhaps treated in a much more lenient manner

Now, that does not get us away from the situation that the BMA, the General Nursing Council, the Royal College of Nursing are all totally opposed, at the present time, to any form of euthanasia, or assisted dying. Can you advise us what consultation or dialogue you have had with any of these organisations? And would it not be a fact that any person given a suspended sentence, as a doctor, for assisting someone to die, would automatically be struck off and not allowed to practice medicine again in this country?

Dr Huxtable: That - and rightly or wrongly, again opinion is very divided - if I take the last part of your question first - actually was not the case with the one health professional to have been convicted, a Dr Cox,

M r Downie: Now, is that pre-Shipman or post- Shipman?

Dr Huxtable: Pre-Shipman.

Mr Downie: Right

Dr Huxtable: Yes. He received a suspended sentence: suspended for two years, it was a two-year sentence. The General Medical Council admonished him and - I think this is the key - ordered him to undergo some training in palliative medicine.

I think that is rather important, because — I am sure the Committee will have heard of this case, already - the doctor there had used potassium chloride, which has no therapeutic property, it could only have been intended to kill.

So, sorry that was the latter part of your question; the former part -

Mr Downie: What I want to know is: what consultation or dialogue have you had with the BMA or any of the other organisations in the medical care profession?

Dr Huxtable: Right sure, I have not had a direct dialogue with them; I have discussed some issues with them, but in fact, not relevant to today’s discussions.

Rather, I have gleaned their view from their professional publications, their websites and the various documents, for example, the BMA’s - 1 think it was - 2001 project on assisted suicide, and there they, basically, reaffirmed their opposition to this being legalised. But I have not had a direct correspondence with them.

Mr Downie: The dilemma that would face us I think that if we did bring in legislation which made assisted suicide or



euthanasia available on the Isle of Man, I would say the great majority of our doctors are members of the BMA.

Dr Huxtable: Certainly, yes. So that could put them in a very difficult position, indeed.

I wonder if the BMA would accept this, if the law were to be enacted and had a carefully phrased conscientious objection clause, or the like: perhaps that might get round some of these difficulties, but the BMA would need one itself, as well, I think.

M r Downie: Legislation on the termination of pregnancy is different in the Isle of Man than it is in the UK.

Dr Huxtable: Right.

Mrs Hannan: It does not exist

M r Downie: It is much stricter in the Isle of Man to have a termination, and there is quite a significant opt-out clause.

Dr Hnxtable: Right, so it might well be a similar clause that we are adopting in this proposal.

M r Downie: I just wanted to broaden out your views on the Joffe Bill, really, and, obviously, it is going to be in for a fairly rough ride. I would think there are more radical thinkers in the Commons than there are in the Lords, anyway. Have you any observations you wanted to make on it, or, if you were in Joffe’s position, and you wanted to get something through, would you tackle this another way, or go about it from another direction?

Dr Huxtable: I think, as a model of that sort of legislation, it is a pretty good model. It seems pretty standard, so far as my reading of it goes, and my comparison with a number of the other models out there.

In terms of its likely success, I can only speculate, and I have had this discussion with a number of colleagues back and forth, back in Bristol, and elsewhere. And opinions have, interestingly, varied: there is one colleague, who I will not name, who actually felt that this had a strong chance of succeeding. Now, this was some months back; but I am aware, for example, that Baroness Ilora Finlay is on the Select Committee looking into the Bill, and she will be, undoubtedly, very much opposed. She is a specialist in palliative medicine.

And yet, what I find very interesting about the composition of that Committee is that it would appear to be roughly a tripartite split, really, between those pro, those anti and those seemingly unconvinced, as things stand. So, it is likely to be a very interesting Committee tHat is sitting later this summer, I think, or perhaps early autumn.

‘ Mr Downie: Given that you have spent a lot of time researching subjects like suicide, and I suppose there is an element of the sanctity of life, in all of that, I wonder if you could explain to us - now, if you cannot do it, say so- how, over generations, this objection to a person’s right to be able to do what he thinks fit with his own life, you feel, has come about, and how, legally, this framework has been built up? When you look at i t you do not actually own or have decisions in your own body; it is applied to the Crown or the Queen or the state. It is also a very serious offence to

assist a person in suicide.If a way was found to introduce a system where assisted

dying could come in, surely all that raft of legislation dealing with those elements would have to be addressed, as well.

Dr Huxtable: I think that is very true. If I could go back to the initial part of your question: it is a rather big question, and, with the greatest respect I am probably not qualified to tell you the exact evolution of the law in this regard. I will try and draw on the opinions of a colleague who I think is now, actually, in the States, John Keown, who is very much in the ‘sanctity of life1 tradition.

He writes in opposition of rulings such as the ruling in the Anthony Bland case, and he feels that the sanctity of life doctrine has been there, as a cornerstone of English law, since time immemorial, and yet it has been chipped away, considerably, by two rulings in the early 1990s: Bland itself, but also a ruling in the case of a severely disabled neonate, in the case of re J, which was reported in 1990 or 1991, depending on which law reports you look at And he feels there the judges were going against the ‘sanctity of life’ doctrine and adopting ‘quality of life’ reasoning in the, as he would have i t forbidden sense of judging that life to be worthless or less worthy than other lives.

So, I would have to look at the original sources, I do not know how much he refers to previous legislation and the like, but his position is, really, we began to chip away at this doctrine in the early 1990s, and we have not really stopped since.

And I am sure that he would say similar things about the ruling of the conjoined twins, Jody and Mary. But I am not aware of his opinions on that ruling. So, his feeling is very much it is a recent erosion.

M r Downie: Thank you. No more questions, thank you.

Mrs Hannan: When you talk about the ‘sanctity of life’, whose life?

Dr Huxtable: It can be a very complex doctrine, and this is the difficulty I have with some of the academic commentary out there from John Keown and John Finnis and the like, in that they will occasionally give the Roman Catholic presentation of it, and sometimes argue, but occasionally assert, rather than argue, that that is the version that English law adopts.

I think the version English law most safely adopts is the version in the crime of murder, so: do not intentionally cause death, certainly by act but arguably, by omission, if you are under a duty not to cause that death - so, if you are under a duty to intervene and rescue.

It, in English Jaw, will apply strictly speaking upon point of birth: that is when legal personality is granted. That is not to say that for pre-birth, there is not some protection: there are protections in the Infant Life Preservation Act and the like, that grant some value to life pre-birth, but generally speaking, on point of birth, the doctrine kicks in.

In the Roman Catholic presentation, it is stated as ‘do not intentionally kill’ and ‘do not intentionally allow to die’, so that looks like quite a rigid, absolute prohibition. And what we see, with the Anthony Bland, ruling in particular, is the judges there refer to the fact that this was intended to end Anthony’s life, so we see there the chipping away at the



second part of it, the ‘do not intentionally allow to die’.Does that answer the question?

Mrs Hannan: So, really it is the state, you are saying, tha t-

Dr Huxtable: It is a state interest

Mrs Hannan: The state interest. A point Mr Downie was making, is it the head of state, or the law or...? I mean the law comes from the head of state: that is basically what you are saying?

Dr Huxtable: I would say so. I mean it is a very difficult one, particularly in a democracy, to determine whether that is an appropriate principle, in terms of justice and the like. Ought we to defer to what some might say is a minority view of the value of life? Particularly, if one refers to the... I would say, the opinion polls would seem to suggest that there is quite a groundswell of support for voluntary euthanasia. So, maybe, our views on the sanctity or inviolability of life axe simply outdated; they are a religious throw-back that most of the community does not actually adhere to, or hold to, these days.

In that regard, I briefly say that I have concerns with some of those opinion polls, because I do feel they rely on the hard cases. So, polls will be conducted shortly after a ruling like Diane Pretty’s, which was a very difficult ruling, a very difficult set of circumstances there: that was, I felt, one of the hard cases.

But of course, the public sympathy is engaged and so there are issues of timing, and also, occasionally, there are issues of how the questions are actually framed. This, again, might sound a little glib, and I do not mean it to sound too glib, but one sees something along the lines of: ‘do you want to die in horrible, writhing agony; or would you like to take a nice pill and go gently to sleep?* And it is that sort of phrasing - it is never that extreme, but you can feel that there is a push, occasionally, to actually load the answers that are being given.

Mrs Hannan: Right, when you were talking about sanctity of life and decision making, what is the position of living wills?

Dr Huxtable: That I find a fascinating area. 1 attended a talk from, in fact a Roman Catholic scholar some years ago- it might help the Committee to say I, actually, am not of any faith, I have no faith, I am an atheist - but I was attending this to just get a broad range of views on the topic, and the speaker, very firmly, said, from the perspective of the sanctity of life doctrine, living wills amount to a form of euthanasia, they amount to a form of passive euthanasia. You are saying in advance: ‘let me die when I get into a terrible state*.

Whereupon - 1 think it was a priest in attendance - he put his hand up and said, ‘I have got a living will, and I am entirely happy with it*. So, that is within one tradition: you saw radically opposed opinions.

As I understand it, from discussions I had at the time, not documented discussions, when the Law Commission of England and Wales proposed that advanced directives/living wills be put on a statutory footing, it was actually withdrawn from the draft Bill, at that point in time, because there was such opposition from a number of groups beholden to the

sanctity of life tradition.Interestingly, in the latest draft of that Bill, which I

understand is before Parliament this week, in fact, the advanced directives/living will section is back in, so, I do not know if this is to suggest that some of those groups are now actually happy with the phrasing that has been adopted, or whether it is felt that the public has gone in the opposite direction, and now wants this expression of autonomy.

I could not say for sure, but, as I say, there are some who feel, in that tradition, that it is a violation of respect for life.

Mrs Hannan: So, if a doctor knows that a patient has got a living will, I think the case was put to us, before, by the previous speaker, that someone is elderly and in a nursing home and suffers from mild dementia, knows his family, and is quite comfortable, is 79, has a living will, made a living will when he was compos mentis at 70, but if he got pneumonia, what would the situation be? What do you think the situation should be?

Dr Huxtable: The short answer is I do not know. Recent evidence actually conducted by a colleague of mine in a recent survey, in Bristol, he drafted a hypothetical living will, and distributed it to a range of health professionals, and this was a paper published in the British Medical Journal around Christmas time, just gone, and half the health professionals said it ought to be honoured, and the other half said it ought not to be honoured.

So, although I am, actually, pretty much in favour of advanced directives and living wills, in principle, I think they are a good expression of autonomy, and they might ward against potentially invasive treatment at the end of life.

Having said that, it is notoriously difficult to interpret these, so I hope that is an acceptable answer to your question. I do feel there are notorious difficulties with interpretation.

Mrs Hannan: It is just that the BMA in their guidance have, actually, said that in circumstances such as that:

‘where a patient has lost the capacity to make a decision, but has avalid advanced directive refusing a life prolonging treatment, thismust be respected’.

That is section 10(1).

Dr Huxtable: But again - now, I am taking issue with the BMA-they are using words like ‘valid’, and it all hinges on what they mean by a ‘valid advanced directive’. One sees, in the cases that have already been decided in English law, that ‘valid’ has been taken to mean competent, informed, voluntarily made, and applicable to the circumstances that have, subsequently, arisen. So, the patient might do one of two things: have a very brief living will, half a page, or even an orally expressed one, while watching a TV documentary, or they might have a 200-page one, that just misses out the particular treatment that actually the doctors now wish to give. Do we honour the ethos of i t or do we look at the fine print and become quite legal in our interpretations and say, ‘Well, antibiotics are missed off, so we can give them’?

As I say, I think it all comes down to the major difficulties of interpretation.

Mrs Hannan: So, in a way, you are saying that living



wills are not worth the paper they are written on.

Dr Huxtable: Sometimes, yes.

Mrs Hannan: Can I ask about consent Do you know anything about consent, in hospices, maybe? Should there be an informed consent, if someone enters a hospice, or palliative care, or whatever?

Dr Huxtable: Absolutely, if the patient is competent yes. And, again, 1 am approaching this from the English legal perspective, so I would follow the road English law has gone down: that we look for an informed, competent and voluntarily deciding patient for admission, treatment and the like. But if they are not so competent, then we allow the decision to be taken by reference to their best interests.

Now, consent has become a bit tricky recently because we have the Mental Incapacity Bill before Parliament, which may well mean that at some point soon, proxies are likely to be appointed. So, a patient can nominate someone in advance of their incompetence to say; ‘my husband’, et cetera, ‘will take health care decisions for me, on my behalf, once I am no longer competent’.

That, in itself, raises a host of issues, but I would hope- and 1 do, actually, quite like the phrasing in the Mental Incapacity Bill - that that is a rigorous enough system, that there will be safeguards in place, such as appropriate couit monitoring of the decisions that are taken.

Mrs Hannan: Right Deaths in hospice: do you think one doctor signing a death certificate in a hospice is enough?

Dr Hnxtable: I actually do not feel qualified to answer that one. I would not want to give an ill-considered answer to that if that is okay

Mrs Hannan: You mentioned the case of the unbearable life, and the doctor providing medication. That was decided, was it, or at least the doctor gave the medication knowing that it would end that person’s life?

Dr Huxtable: Yes.

Mrs Hannan: So, it was not just any old medication for depression or...?

Dr Huxtable: No. I, unfortunately, could not say exactly what the medication was, but it was medication designed to be taken by the patient to end their life. So, it was an assisted suicide.

Mrs Hannan: I think that is all I have got for now. 1 might find something else in a minute.

The Chairman: Dr Huxtable, could I ask, you mentioned the case of Dr Cox, and that was pre-Shipman. What was Dr Cox convicted of?

Dr Huxtable: He was convicted of attempted murder, and, in fact, I find that a rather difficult judgment in itself. 1 can fully see why the court did this, but, if you will permit me to be a little cynical for a moment what actually happened with the patient who, it is important to know, had arthritis, and that was why she had such unbearable suffering - that

seemed to be the primary cause of her suffering, on ray understanding of the case - he had attempted a number of means, but, obviously, to no avail, and then he injected the potassium chloride, and the patient died somewhere between a minute and a minute and a half later.

Now, the argument that was seemingly accepted by the court by virtue of the attempted murder, as opposed to the murder charge, was that in that minute to a minute and a half, the natural causes had intervened and actually caused the patient’s death. So, they could not establish causation.

There is a second part to it, though, in that, again, as I understand it, the patient had actually been cremated by the time of the charges being brought; or by the time of the trial, at least So, maybe they could not have actually established causation of death, hence the attempted murder charge.

I am a little cynical about it, because I suspect one could have proceeded with a murder charge, but I feel the reason they substituted the lesser charge is because they did not want to expose him to the mandatory life sentence of imprisonment And that perhaps, is a related reform; in fact, it is one I argued about in the PhD thesis, that we could actually do away with that mandatory limit of life, and actually have a scale, life as a maximum, instead of life as a mandatory.

M r Downie: Some countries have culpable homicide do they not which overcomes that

Dr Huxtable: Yes,

The Chairman: Was there any suggestion in the defence, or in that case, that Dr Cox had been requested by the patient with arthritis to intervene in that way.

Dr Huxtable: Yes. There were persistent and very loud requests that they do something - ‘they’ being the healthcare team - to put her out of her agony, and this was from the patient. And it is notable that there was no suggestion in the ruling, or afterwards in the GMC hearing, that he was ill motivated in any way. He was, arguably, by virtue of the palliative medicine training he needed, not fully versed in techniques of pain control. But that said, it is notable that the patient’s sons were there, throughout the trial, in support of the doctor. So, there was no suspicion of...

The Chairman: So, that is a world apart from Dr Shipman who...

Dr Huxtable: Absolutely, yes.

The Chairman: Just so we had some clear water between linking those two cases.

Could I ask you what are the differences*.. I am not quite clear what the difference, as you perceive it, is between what you propose as a reduced offence of ‘mercy killing’ and ‘voluntary euthanasia’.

Dr Huxtable: Well, and this is perhaps the most controversial aspect of what I intend to propose. As I say, much of this is based on what I proposed during the PhD thesis, and that is almost the groundwork for the study that will come later this summer.

What I actually noted, and what would appear not to have been commented on much in the legal press, in particular, is



that the public fixate on voluntary euthanasia and, I think, rightly so, but the judges are not always encountering cases of voluntary euthanasia; they are, on occasion, encountering cases of involuntary euthanasia. And it may well be that these are cases of voluntary euthanasia, but the media report did not actually have access to whether or not there was a request So, by ‘involuntary’, I am saying we have, at least no evidence of consent or a request from the person in question.

The concern, depending upon one’s perspective with regard to euthanasia, is, actually, the judges sentence exactly the same in cases of involuntary euthanasia, as in cases of voluntary. So, this notion that autonomy should take priority, so, in fact, autonomy ought to be accounted for in voluntary euthanasia, so we have even lesser sentencing, is actually thrown out the window. It would appear the judges equate the two.

What I would hope to do, under my proposal, but we will have to see how it works out later this summer, is stipulate that if it is a voluntary one, of course, it is a lesser sentence, a lesser offence. If it is involuntary, or there is no evidence of a request, or the witnesses simply are not believed, with regard to that, then the criminal law should be actually more concerned, if we are going to take autonomy seriously enough, but not go to the final extreme of legalising.

The Chairman: It is a step on that road -

Dr Huxtable: It might be a step on that road, and that is one thing, I think, we need to keep under review and by ‘we, I certainly mean me, in looking at this, and once I have a proposal drafted up, I would be more than happy to send it to the Committee for their comments. That would be fascinating and very helpful for me; but I intend to present it across the country, in particular, and see what people feel. So, it would be interesting to see what the ethicists feel, in terms of whether it is a moral fudge, and what the lawyers feel, in terms of: once we interpret it this way, are we going to end up with voluntaiy euthanasia as a law? That is not what I intend, but everything is open to interpretation, it would appear.

The Chairman: I appreciate your opening comments where you described your change of attitude from when you had done your PhD thesis to your current position, and notwithstanding that, in your opinion, is there any opportunity to have almost a parallel system that might accommodate some person wanting to make a choice, and having medical professional support to support them in that, and people on the other side of the coin, who do not want to make that choice, do not feel it is appropriate and doctors or medical professionals who do not want to engage in that? Could the two actually run in parallel, or are they so contrary, in your view, that that would not be feasible?

Dr Huxtable: I feel, in theory, that they could run in parallel. I would not be entirely comfortable with that, although, as I have mentioned a couple of times, I am aware of those hard cases, so I am concerned by the plight of some patients. So, I would concede that, in theory, yes, you could have a twin-track system.

One more pragmatic concern there, that I have seen crop up occasionally in the literature, is the concern that once we have a system of voluntary euthanasia, then the palliative medicine might well suffer.

Now, I am not convinced in either direction on this, yet, so I would need to see more evidence from, for example, Oregon. That is what I hope to access in New York: with regard to whether actually palliative care is suffering there, whether patients are not receiving appropriate pain relief because they are pushed into the euthanasia filter, if you will.

However, as I say, in theory, I would hope that the two could exist together, and there could be a palliative care filter such as in Lord Joffe’s Bill, which has got something to that effect

The Chairman: Thanks, that is it for me. David?

M r Anderson: I am okay, thank you.

Mrs Hannan: Yes, could I just ask: in your research have you found any reason why people who actually support voluntary euthanasia do not commit suicide?

Dr Huxtable: No, I have not No, that is a very interesting suggestion, in a number of ways, in particular, if I go back to the Brongersma situation: we should recall there that this was a seemingly perfectly fit and well person who was seeking assistance from the doctor, and one has to wonder why he was seeking such assistance. Is it because the system was there, so it gave his suicide, which some would frown on, a veneer of respectability, then? I do wonder that

Also with regard to those in favour of voluntary euthanasia, perhaps the best suggestion I have seen so far is actually from a medic, writing on the matter, that as it tends to be the philosophers who are the big fans of this, why not just let them be the assistance? So, do not make the medical profession the euthanasiasts; rather appoint the John Harrises of the world. Now, quite what John Harris would say in response to that, I do not know, but I will be seeing him -

Mrs Hannan: We did ask him when he was here! (Laughter)

Mr Rimington: Yes, we should...

Dr Huxtable: Well, I will ask him when next I see him!

Mrs Hannan: Right. There was something else I was going to ask. No, it has gone.

Mr Rimington: Can I just go off onto a bit of a tangent? It is not an issue we have discussed - the Committee, or in evidence - but people, anecdotally, say, ‘You would not treat my dog like that. If my dog was in pain or whatever, it would be put down’, and that is what we would do with animals, generally speaking and given - okay, there is one hurdle that we have to acknowledge that the animal cannot voice its feelings, like ‘Please, put me down!’, whether it has those feelings or not, it certainly cannot voice them that we can hear. How do you draw that distinction between animals and man, and where in the spectrum does one come down and say, ‘This is intelligent life and should be treated in one way, and this is not intelligent life and should be treated in another way1, when there are other mammals with, obviously, high degrees of intelligence.



D r Huxtable: Yes, certainly. 1 think a number of responses spring to mind.

One would perhaps be to again draw on this notion of hard cases making bad law. I would suggest, but I am reliant here on evidence from those working particularly in palliative medicine, in hospice care, that with regards to human suffering, we can actually do a lot to respond to such suffering, and requests for euthanasia would appear to be requests to deal with undealt with symptoms, rather than a request to die as such, because if the symptoms are dealt with, the request or the wish goes away. That is again, perhaps, anecdotal evidence, but that seems to be the message I get, quite loud and clear, from my colleagues in palliative medicine.

With regard to whether we are being consistent in drawing a distinction between humans and animals, maybe we could work it back the other way, and say: there are things that we do to attempt to deal with human suffering that perhaps, if we have got a pesky cat urinating everywhere, our response is euthanasia in the end. So, maybe we should do more to respond to the animal suffering. I do not know, quite, what the most consistent response would be, and I know that, interestingly, one of those very much in favour of human voluntary euthanasia, Peter Singer, actually thinks that we are radically inconsistent in our treatment of animals as opposed to humans, and he would argue in a number of his books that we should not be so ‘speciesistic’ is the term that he uses, and that we should adopt a consistent quality of life ethic and also an ethic premised on choice and autonomy.

So, where the animal is a lower order animal they cannot exercise choice, but they can suffer, so we can respond to their suffering. Where it is a higher order animal, such as a human, you listen to what they want, but also respond to their suffering.

M r Rimington: A big subject!

Dr Huxtable: Yes, it is.

Mrs Hannan: It is, isn’t it! Yes, what about all those animals gone to the meat plant? (Laughter)

The Chairman: Mr Rimington is our Agriculture Minister!

Mrs Hannan: Quin tin, could I just ask - ?

Mr Rimington: And the wildlife! (Laughter)

Mrs Hannan: Could I just go back to the suicide: if a person thinking of suicide briefed their family in regard to that suicide, could that family be accused of assisting that suicide?

Dr Huxtable: This is one area of the law I very much disagree with. They can, in theory. It is one that has, again, scarcely been written on. I recently wrote on it for the British Medical Journal, where there was a very distressingly inconsistent, apart from anything else - a distressing case in itself, in 1989, involving a Mr and Mrs Johnson, whose daughter had written a suicide note...

Well, actually I will take you back a bit further she had attempted suicide a couple of times before. I think she had multiple sclerosis that was progressing quite seriously, and

she was living in an annexe of their house. She expressed again - after having much psychiatric treatment and the like, so the doctors had attempted to deal with any underlying depression - her intention to attempt suicide. They did nothing actively to assist her when, one night, they returned home and they found that she had, actually, taken an overdose, but she had left them a note saying, ‘Do not call the doctors, do not do anything to revive me. You know this is my wish: leave me, go.’

They sat with her. That is all they did: they sat with her, while she was dying, and when they were sure that she had died, they then called the ambulance and called the police, so that they did actually bring in the authorities. They said 'We did not do this, but this is what has happened to our daughter’, and they were actually convicted of aiding, abetting, counselling or procuring a suicide.

I think that is an incredibly difficult case, both in terms of autonomy and in terms of when we are to honour advanced directives or living wills. There is still a big debate going on as to whether a suicide note might amount to an advanced directive or living will. My personal reaction would be, of course, if it is an emergency case, and the person is brought in, and the paramedics have found the note, then your instinct probably ought to be, unless it is a comprehensive advanced directive, to resuscitate or revive, and then determine, and if it truly is their express wishes, then they can leave an appropriate note, next time.

So, life first, but then autonomy second, so people ought to have that right to decide for themselves ultimately.

Does that help? As I say, my problem is: we have this inconsistent position with regard to this one ‘successful’ conviction - ‘successful* very much in inverted commas there - of two parents for sitting with their daughter, whereas if a health professional acts on and honours an advanced directive, that is not criminal.

Mr Downie: In my view, that goes back to the question I asked you about the common law and 'whose life is it anyway?’ (Dr Huxtable: Yes.) Under law, you have not got a life; the Crown owns you (Dr Huxtable: Yes.) - simple as that.

Dr Huxtable: Yes, I think that is the right opinion and, again, there is a big debate as to whether the Suicide Act, which decriminalised suicide, actually granted a right to commit suicide, and the big suggestion is that is did not

The Chairman: Okay, I learned a lesson a long time ago: never let a chance to ask for something go by. You mentioned your dissertation a few times: I am not sure we have a copy of that but if we do not, could that be possible for you to furnish us with one?

Dr Huxtable: Certainly, yes.

The Chairman: Lovely, thank you.

M r Rim ington: It is not too weighty, I hope? (Laughter)

Dr Huxtable: Eighty thousand words.

Mr Anderson: Well, the Chairman will deal with it. (Laughter and interjections)



Mr Rimington: We will give it to the Chairman to do a synopsis! (Laughter)

The Chairman: Yes, if you would like to add in a synopsis as well! (Laughter) It is very kind of you, thank you.

Just to turn to you, Dr Huxtable, if there are any concluding comments you want to make?

Dr Huxtable: I think everything I intended to cover has actually come up. I just reiterate my thanks for inviting me. Thank you very much.

Committee m em bers: Thank you very much, a pleasure.

The Chairman: Right, that is the conclusion of the public evidence. We will just resume for some administrative matters, but, otherwise, thank you all, ladies and gentlemen, very much for your attendance; and Dr Huxtable, thank you again.

The Committee sat in private at Ì .Ì7 p.m.


KCE, No. 4 2004

j c i w f


R E C O R T Y S O I K O I L Y C H I A R E AS F E E D


(HANSARD)

S E L E C T C O M M I T T E E O N V O L U N T A R Y E U T H A N A S I A

BI NG E R - L H E H MY C H I O N E C O Y R T - G Y - B A A S E MYGHI N AGH LESH COARDAI LYS

Douglas, Friday, 17th September 2004

Published by the Office of the Clerk of Tynwald, Legislative Buildings, Bucks Road, Douglas, Isle o f Man. © Court of Tynwald, 2004 Printed by The Copy Shop Limited. 48 Bucks Road, Douglas, Isle of Man

Price Band B

114 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004

Members Present:

Mr Q B Gill MHK (Chairman)Hon. D Anderson MHK Hon. A F Downie MHK


Clerk:Mr M Comwell-Kelly, Clerk of Tynwald

Business transacted

PageProcedural................................................................................................................................................................................... 115

Evidence of Prof. A Johnson......................................................................................................................................... 115

The Committee adjourned at 12.05 p.m. until 12.10 p.m.

Procedural................................................................................................................................................................................... 128

Evidence of H M Attorney General.............................................................................................................................. 128


Oral Evidence SELECT COMMITTEE, FRIDAY, 17th SEPTEMBER 2004 115 KCE


The Committee sat in public at 10.38 a.m. in the Legislative Council Chambers,

St George’s Court, Douglas


Procedural

The C hairm an (M r Gill): Ladies and gentlemen, moghrey mie, good morning, and Prof. Johnson in particular. I am sorry we are starting just a few minutes adrift of the time we had hoped to start, but, obviously, we have had to relocate here to St George’s Court because we did not want to disrupt the building work which is going on across the road at the Central Government Offices. So, thank you all very much for attending.

It may be that because we have relocated, other members of the public will be arriving late, so, Prof. Johnson, I apologise in advance if that is the case, and hopefully that will not disrupt your facility to give evidence.

If I briefly explain for the record that we are a Select Committee of the House of Keys looking into issues around voluntary euthanasia following the introduction of a Private Member’s Bill by my colleague John Rimington, who is to my right, and we are tasked with collating evidence and reporting back to the House, and then matters will progress accordingly. So, that is our role today and hereafter.

Prof. Johnson, if I could welcome you to the Island and to our Committee and thank you for making the effort to come and speak with us. It is appreciated.

If 1 briefly do the introductions, if I may. To my left I have Mr David Anderson MHK, Mrs Hazel Hannan MHK. I am Quintin Gill; I am the Chairman. I am also a Member of the House of Keys. Alex Downie MHK and John Rimington MHK and we have two Clerks. One with us today is Mr Cornwell-Kelly who is the Clerk of Tynwald and also his deputy, Mrs Cullen, who will be co-writing the Report for us. So, that is who we are.

EVIDENCE OF PROF. A JOHNSON

The Chairman: So, if we could turn to yourself, Prof. Johnson, perhaps if you could give us a brief introduction to yourself and your professional background and what brings you here and then if you want to do an introduction. Then, perhaps, we will turn to a question-and-answer session, if that would be an acceptable format for you. Thank you.

Prof. Johnson: I retired last year as Professor of Surgery in Sheffield. I had been in practice in the health service in the UK for exactly 40 years when I retired, and, of course, have seen a lot of changes over that time. My practice was to treat a large variety of both benign and malignant conditions,

as a general surgeon particularly, in the gastrointestinal (GI) tract.

I and a colleague were the first people to teach medical ethics to medical students about 30 years ago, in the context of clinical teaching, and we set up seminars with the students and discussed actual patients on the wards that we were looking after. It is very easy for professors of ethics in ivory towers to pontificate on ethical principles; it is a very different matter applying these at the bedside to real patients, and as a result of that 1 have written two books on medical ethics for medical students, looking at the practical, issues involved.

I was also Chairman of the Royal College of Surgeons of England working party that was looking at the surgeon’s duty of care, and we published guidelines for surgeons as a result of that.

I would just like to say it is fascinating to see how attitudes have changed over the last 40 years, because as I was starting in practice, the palliati ve care hospice movement was just beginning, and I never believed that I would end up having a professor of palliative care in my Department of Surgery at the University of Sheffield, to work closely with him, and he was appointed about eight years ago. But I think it is important to stress that this palliative care hospice movement has had a huge effect on general care and not just on hospice care. We think of it being something extra, and I was very glad when the dean asked me to have the Palliative Care Department with me, because it has had also a tremendous influence over the way we care for dying patients in ordinary wards and in ordinary practice. It has produced a whole new attitude of honesty about disease and I think it has influenced, tremendously, pain relief throughout the patient’s care, not only in terminal but throughout the patient’s illness,

I would like also to say that I have a lot of sympathy with people who have had distressing experiences. We as doctors have not always got it right, and I think we have got to acknowledge that. There have been some very distressing and unfortunate experiences, and I, too, have had close relatives dying in distressing circumstances, both of acute disease and long-standing chronic disease, so I am not detached from the issue which we are going to discuss.

Euthanasia was being discussed by us 40 years ago and, as you may know, the first introduction to the UK Parliament was by Lord Raglan. He, after it was not approved, said that he could not see any way that legal safeguards could be provided and, at the time, the BMA Ethics Committee said exactly the same thing. 1 do not know whether lawyers have become more clever in the last 40 years. No doubt that is a question you are going to ask the Attorney General when he comes.

I have only been asked for direct euthanasia, I think, in my 40-year practice, on two or three occasions - a lot of people have said ‘I wish I could die’, or ‘I wish I was dead’, but not direct persistent asking - and 1 would just, perhaps, mention one of these because it is very strong in my memory.

It was a man with a painful but benign condition, not a malignancy, who repeatedly asked me and my colleagues to kill him. He asked for us to do an operation and then not tie the blood vessels, so he would die under the anaesthetic. We got to know him better in the ward and, eventually, he broke down and said, ‘You can see I’m so lonely’. Then we realised that he was appealing because he was so lonely. His wife had

ProceduralHouse of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson

116 KCE SELECT COMMITTEE, FRIDAY, 17th FEBRUARY 2004 Oral Evidence

died and he was appealing for help in this way. But that was persistent asking, and not just to me but to colleagues.

One thing I would just like to mention at this introduction is use of the word ‘incurable’. It is a very difficult word to define. I have only cured one disease, I think, in the whole of my practice and that is appendicitis, because you have only got one appendix and when you have taken it out you cannot get it again. But nearly all other diseases I have treated can come back. Vascular disease, cardiovascular disease: you treat one bit of it in a leg or in a heart, but the disease process is still there. I suppose the commonest painful, incurable disease is arthritis, from which millions of people suffer to some degree or other, so I think we have got to be very careful when we use words such as ‘incurable’ because it can be very misunderstood.

So, that is really my experience, and I have done a lot of thinking about the effects that any legislation would have on doctors as a profession. That is one of the areas I have been wrestling with, how it would affect us as practising doctors. I could talk more about that if you wish later.

The Chairman: Thank you very much.Could I begin by picking up on a few issues that you

raise there, Professor. Certainly, I would welcome the chance to come back to the impact on the profession, not only doctors but nurses, medics, the whole healthcare profession, subsequently. You told us the incident of one of your patients, who, on further examination of his circumstances, said that he was lonely. Do you want to just tell us a little bit about how that situation bedded out?

Prof. Johnson: Yes. I think we talked to him, we got to know him, we helped him in various ways and this was very much an appeal for help. I am interested that if you look at the indications for euthanasia in Holland and in Oregon in the United States, over the time, certainly in Oregon, there was an increasing number of people who put hopelessness, loneliness and not feeling wanted as their criteria. I think the figures in Oregon for the first three years were 12 per cent, 20 per cent and 60 per cent. In Holland, pain as a reason has been going down and feeling hopeless... and this is one of the things I think that we increasingly see with elderly patients. It is actually a social, mental issue that is at stake, not primarily a physical issue.

The Chairman: So, in that instance that you cited, was the gentleman counselled out of his - ?

Prof. Johnson: Yes, fortunately we have a lot o f . . . As you say, it is not just the doctor. You have got a lot of other support staff and social workers and people like that.

The Chairman: So, that would suggest that any process that afforded people the right to choose to make persistent requests for euthanasia would clearly need to have a robust counselling process as part of that.

Prof. Johnson: Yes, it is identifying the real cause behind this, and it is, of course, an increasing problem, loneliness in old age, as more and more people are living alone, certainly in the UK, and Social Services are, of course, helping tremendously with this. I think it is very difficult to make this distinction and it is very difficult without going in great depth with people, to understand really what they

are asking for, and I think we have got to be very careful not to just take the superficial appearance, such as pain or something like that. The pain may be mental, spiritual, not just physical.

The Chairman: Thank you for your definition of ‘incurable’, or your explanation of that. By the same token, it would be fair, then, to say that all of us in this room are suffering from sexually-transmitted terminal conditions.

Prof. Johnson: Yes.

The Chairman: We are all going to die. So, incurable in that context is... I am not trying to be flippant in saying that but there is a definition and an understanding, isn’t there, of terms? Is there a legal definition of ‘incurable’ that you are aware of, that you could point us towards?

Prof. Johnson: Well, what most people think is that it is progressive. They think of it as incurable, and I think you have got to use certain words like that, but, of course, most diseases are progressive, as you rightly say, as they become worse with age. I think, again, the lawyers have got to look at this, if you are going to consider legislation. It is very difficult to define these in a way that is legally watertight. Of course, pain is not an objective thing we can measure. We have not got a painometer, and severe pain to somebody may not be severe pain to somebody else and, as we all know, mental and other social conditions affect one’s sensation of pain.

The Chairman: Just two more points perhaps, if I may, before I turn to my colleagues, Professor.

I think I wrote down you used a phrase that doctors have not always got it right. We have had representation from a doctor on the Island representing his colleagues in a professional capacity in which the point was put to him: ‘Do people die in distress and pain?’ and could I put the same question to you? Despite advance in palliative care, despite all the technical advances, is that still the case, that in your experience people die in pain and distress?

Prof. Johnson: Less and less. We have this great advantage of having a palliative care department and I suppose we are especially privileged, and we have anaesthetists who are expert in pain relief, as well, and I think what is encouraging... I think a few may still do so, but I think I can say, if we really had the facilities and the skills, it should be extremely rare. All our students now go through a palliative care module as part of their undergraduate training. That was not happening when I was a student. It was very much haphazardly taught and not really taught at all. So, I think a new generation of doctors coming through will have much better training in this sort of aspect, and it is not just giving drugs for pain; it is the whole patient that we are looking at.

The Chairman: And that doctor-patient relationship, that will follow from that awareness and appreciation and practice that you have just touched on; there is an argument that that relationship would be soured or flawed by the fact that people would have less trust in a doctor, if that person acceded to their persistent and informed request for euthanasia. Do you have an observation on that?

Prof. Johnson: Yes, I think it would have long-reaching

House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A Johnson


but often subtle effects on this relationship. You will not get attitudes changing suddenly, but gradually it would change.

Let me just give you the scenario. I have been looking after a patient and giving her pain relief, managing her symptoms, 1 have been worrying about her at night. I have been getting up at night to see her sometimes, perhaps been called in, and then she turns round and says, ‘Well, thank you very much for your care, Doctor, would you now kill me.’ I would find that a very difficult relationship. I would say, ‘Well, why have 1 bothered to look after her all this time?’ ‘Why didn’t she say it earlier?’ would be one of my reactions.

Then there would be the effect on other patients, not the ones concerned, as the news got round, and in our hospital we have got four-bedded bays. Most of our patients are in four- bedded bays - not big old-fashioned wards - and one or two single rooms. They talk and they gossip about things, as you well know, and I think they will start saying, ‘Oh, he’s done two. The Professor’s done three. ’ Will you move people out to a special death row, if you like, beforehand? How would you actually handle this at the bedside? As I say, it is very easy to talk about these things like autonomy in the abstract, but we have actually got to get involved with this.

So, 1 think the relationship between the doctors would alter very markedly, slowly and subtly, and as you know, the doctor in Australia was nicknamed Dr Death, wasn’t he, the one in the Northern Territories? I would not like to get that label for myself and I do not think any doctor that I have ever worked with would like that label, but that would be the sort of thing that I think would happen if a person was involved.

So, yes, it would lose the confidence of the elderly patients particularly, who are not very sure, they are not very certain. They would start doubting, I think, the doctors’ caring and the relationship with particular patients. And the other effect, I think, is - if I may just go on from that - a quite interesting one. It might also have the other effect, that doctors would say, ‘Look, why should I try hard? Why should I really try and help save this patient? We've always got this as an outlet.’

This was brought home to me by a colleague of mine who trained as a vet before he trained as a doctor, and he was telling me that he had to, all the way, check himself, because in veterinary medicine you always had this feeling that if you did not win you could always put the animal down. I could see people saying, ‘We’re not going to try too hard here because there is always this euthanasia option,’ and although you say the patient has complete autonomy, they do not. There could be persuasion.

Doctors have quite a lot of influence over the way people think and, in discussion, you can point people in that direction and people will say, ‘Why do we bother to do research on some of these very difficult diseases? Why should we do more work on good pain relief?’ if this option comes in. So that will, I think, be a subtle change in people’s attitude to disease and its management.

The Chairman: That sounds a very doctor-focused -

Prof. Johnson: It is. I am seeing it from a doctor’s point of view.

The Chairman: - basis that you have given that and

not patient-focused.

Prof. Johnson: You asked me as a doctor. As far as patients are concerned, as I have said, there will be a mistrust developing, particularly under the elderly, unsure patients, who are very nervous when they come into hospital and come under care and they would just hear rumours. ‘Oh, well they put you down if it gets too difficult,’ will be the sort of rumour that is going around. I know that is not what is intended, but that will be the side effect.

The Chairman: Yes, and you used the tabloid basis of Dr Death. Surely doctors are not overly concerned whether they are being given an unfair title, or you would not angle to be Professor Compassion or Dr Caring. That is just a tabloid title that really is a by-product of the whole process, surely. I just wanted to explore a little more why you felt it was appropriate to raise that issue.

Prof. Johnson: Because a hospital setting is a very tight community and a large number of doctors will not get involved in this, judging by the surveys, if it was legalised. So, some would and I think what you would find is one or two would be the major people to get involved in that. So, I think they would tend to get a label. How would you actually deal with the patient in the ward? Will you move them? Will you do it in that ward with the other four people around? These are the logistics and patients are saying, ‘No’. If you say, ‘Oh, they are being moved to that single bed. Right, I know why they are being moved to that single room.’ Patients do talk about their doctors a lot, certainly in a hospital setting, and I think they do get nicknames and labels, yes.

The Chairman: The evidence you have given, so far: is this all on your professional experience and professional basis? For clarity, could 1 ask, do you have any faith that is also influencing and guiding you?

Prof. Johnson: I think that the Hippocratic and then the Judeo-Christian ethic which has guided us for the last 2,000 or 3,000 years has been a tremendous instrument in the compassionate care that we have developed. Everybody thinks that the Hippocratic Oath was the norm in Greek times. Of course, it was not at all. It was the exception and it was a few who said, ‘We are not going to practise what the rest of you are practising’ - and that was leaving girl babies on the hillside to die - ‘We are going to have a much higher standard,’ and that is why the Hippocratic Oath came in, from a small group of Pythagoreans in Greece and then, because it fitted with the Judeo-Christian ethic about the value of life, it has come right the way through. Our medical school is one of the veiy few where they still remind the students of the Hippocratic Oath when they qualify, when they get the diploma. Most people have dropped this.

The Chairman: And for you personally, Professor, do you bring any faith to your practice?

Prof. Johnson: I do, Christian faith, yes.

The Chairman: Mr Anderson?

Mr Anderson: Can 1 first of all thank you for helping to give us a balance. We have had ethics before, but it is

House of Keys Select Committee on Voluntary Euthanasia - Evidence of Prof. A Johnson


good to have somebody who is actually very practical and has obviously had a very deep and working practical life in health.

You touched on palliative care. We in the Island have a very good Hospice and, obviously, the UK has a network of hospices now. What you are saying to us is that the level of palliative care within the normal hospital settings is now increasing to such a degree that the pain that people go through at the end of their life is greatly reduced, and maybe you could give us an overview of how that has changed, even in the last few years, compared with maybe 20 or 30 years ago?

Prof. Johnson: Yes, I think, in drug terms, the use of different types of drugs, not just increasing doses of one particular drug like morphine, which we always think about in pain relief, but the use of other types of drugs. But I think the thing that really has come is looking at the whole patient. It is not just giving a drug for pain relief and that is the message that has come through: the patient’s social, spiritual and mental understanding.

1 do not know whether you know, but, in the UK, they are appointing directors of spiritual care in all palliative care centres. They are beginning to do this. The first one was appointed in Scotland last year, recognising that it is the whole patient we are caring for. So 1 think that is the big emphasis. Whereas we were quite good, I suppose, some years ago at giving increasing, titrating doses of drugs, we are now realising that there are a lot of other drugs and anxiolitics as well as drugs. Sorry, anxiolitics are drugs to stop anxiety. Often you do not need nearly as much of the painkiller if you give a drug that helps with the anxiety as well. And so there is a tremendous skill.

Cicely Saunders, as you know, who started off the hospice movement, trained as a doctor and nurse, a pharmacist and a social worker before she set it up and that, I think, is a message to the whole community that you need all these skills.

Mr Anderson: It must be very difficult for you to pluck a figure out of the air, but of people going through the dying process, how many people would not be able to be helped, as a percentage, do you think, nowadays, with these modem drugs?

Prof- Johnson: I would say it is less than 1 per cent, I think, who are in real distressing... as I say, we cannot measure pain but they do, in my experience - and 1 am dealing with cancer patients, general surgical patients - even in the main ward of a general hospital, the great majority, 90 per cent? It is a figure out of the air, but I can only think of one or two examples where I feel we could not relieve this in the last 10 years. I can think of quite a lot of examples looking back to my early practice, where one or two stick in the mind where we just did not relieve very severe pain because we did not understand it and what was causing it.

The other thing is things like nerve blocks and these sorts of things. Local-anaesthetic relief of pain has come in and uses of very skilled things like epidural blocks and things like that and this keeps the person fully conscious and not damping their activity as well. You are just relieving the pain.

M r Anderson: Thank you.

Just moving on, you touched on the effects of legislation coming in on doctors. If, for example, the Isle of Man was to progress down the legalisation route, what implications do you think that would have on the Isle of Man’s ability to recruit to our National Health Service, when we are the only jurisdiction that legalises this in Great Britain?

Prof. Johnson: I think this would producc problems. We are short of doctors in the UK, particularly in the area of care of the elderly and areas which are seen as not so dramatic as acute services. We have great difficulty in recruiting people to that, and I think you would have a lot of people that would not want to come. You might recruit the wrong sort of person. You might recruit the person who is perhaps a little bit too cavalier in this area.

The other thing to look at is the ethnic minority groups. I do not know whether this is an issue in the Isle of Man, bu,t in the UK, about 20 per cent of our doctors come from ethnic minority groups, and that is a very important issue. They also are particularly in the care of the elderly side of the things and, of course, it is an absolute anathema to a Muslim to consider euthanasia. So, I think you would be blocking a whole ethnic minority group from coming and that might be construed, in a sense, as prejudice against them.

M r Anderson: Thank you.Just moving on, if I might, Mr Chairman. Obviously, that

would impact as well on the nursing profession and, realising that we follow national standards, do you see a concern there, as well, in that the standards that medics and nurses are trained to, if they are any different in our jurisdiction, for example, would that create a tension or would we have to create our own standards for people as guidelines?

Prof. Johnson: Well, I think if you go by the Diane Pretty legislation on Human Rights in Europe, are you asking doctors to go against that, which is a very serious thing to do? So, you would actually create two types of doctors and nurses: those who do go along and those who do not.

I was talking to a Canadian just last week, a Canadian doctor, and he could foresee, in the next, perhaps, 20 years, the medical profession in Canada splitting into two halves, actually splitting into what they call the Hippocratic group and the non-Hippocratic group, but it would not happen suddenly, as I have said. A lot of these things are subtle and they grow steadily, but you gradually drift apart, the two attitudes, and you would end up with a different sort. I am very concerned, with nurses in particular, that we do not put on to them something that doctors will say, ‘This is what you have got to go along with,’ In our hospital, of course, any issues or decisions about patients are discussed with the nurses as well. It is very easy for a doctor to override the nurses’ opinion and make them feel that they do what we tell them and that is, of course, quite different now from how it used to be. They are equal partners in care and they, I think, would be extremely concerned. I do not know whether you have taken evidence from nurses or not at this Committee.

M r A nderson: Just moving on on that one, then, the legislation at present actually protects doctors with medication they give that pfossibly has a double effect. Can you see a problem then in legislation terms if, for example, we change that? The Isle of Man legislation is different and we have this double effect at the moment. If we change that



legislation, do you think that would cause a tension with the new law?

Prof. Johnson: You mean allowing...?

Mr Anderson: Allowing them to go further than that double effect?

Prof. Johnson: Yes, I think it would. The double effect, of course, is commonly quoted. As you well know, it is things like doses of drags. The dose you would give to a terminal patient is often very high, but they become tolerant to that over the last three or four weeks. If you gave that dose to somebody who had not had any, it would be a lethal dose. So, you have got to take it into context, and it is interesting that the titration between pain and breathing is often actually quite balanced, that the pain from the breathing also goes along with the effect on the pain. So, the double effect is there. I do not consciously, I think, say ‘Right, I am being protected from the double effect as 1 give this treatment,1 but it would alter the intention, that is the point. It is a different intention. That is the legal distinction,.as 1 understand it.

Mr Anderson: And finally for me, Mr Chairman, at the moment, what do you think bringing in legislation in a jurisdiction like ourselves would have on society?

Prof. Johnson: Again, 1 think the attitude would slowly change. The attitude to suicide would change. I think gradually people would say, ‘Well, if a person wants to commit suicide, let’s let them,’ because, after all, if you can legally do it... Can I just take an illustration? Nowadays, if you find a man standing on a bridge saying he is going to jump off because he wants to kill himself, we send a policeman up there, risking the policeman’s life to try and coax this person down because we want to save his life. If euthanasia became a sort of standard treatment, we might say, ‘Okay, we’ll let him jump,’ or you might even say, ‘Let’s give him a little bit of a push and help him to jump, if he really wants to commit suicide.’ That is actually the society equivalent.

Somebody gave a nice quotation to me the other day and 1 think it is that ‘the respect for human life is part of the glue that binds society together’ and once you gradually lose that you are going to lose the respect for life in other areas.

I was horrified: I was in Europe last week and Belgium,.. It was a Belgian newspaper. They introduced euthanasia, I think it was about two years ago. Two of their MPs are now trying to introduce euthanasia for infants and children, euthanasia for infants also. Everybody else does not like the words ‘slippery slope’, but if that is not a slippery slope, I do not know what is, and when you have got philosophers and teachers of medical ethics like Peter Singer, who teaches medical ethics to medical students, saying that for parents to kill their children has no worry for society - that is what he actually says, because he thinks that human beings are just animals - you can see what can happen if you start going down this direction where children have no particular value. ‘Alright, let’s get rid of them.’

That did happen, as I have said, back in Greek times. The Jews were the only ancient race who respected children, and the penalty for killing children in Jewish law was the same as for killing the king. Other ancient races did not value children at all: to the Romans a child was just a chattel, they

owned it and they could do what they liked with a child. The genius of the Christian and Jewish ethic is that children have been valued, and here we have got people saying that young children do not matter, they can be put down, and we have got people introducing euthanasia for children in Belgium.

The Chairman: Could I interject, Professor, to make it clear that our remit is to discuss competent adults, but I take your point.

Prof. Johnson: That is true, but all I was saying is the effect on society was what I was asked about, and I think that would be one of the effects on society if, two years afterwards, you are talking about children and that influential philosophers are saying that young children can be killed by their parents with no worry for society - that is what he is saying, and he is teaching medical students.

Mrs Hannan: Could I ask you, you talked about patients in hospitals in four-bedded wards and people being moved, but patients do die in hospital, don't they, and patients do know that, when someone near to them has died?

Prof, Johnson: Yes, they do.

M rs Hannan: And they also know when patients are being moved to a hospice, so this is happening all around us all the time. So yes, it would be distressing if someone in the next bed to you died, especially someone you were talking to a few minutes before.

But in the other area, you were talking about doctors actually taking part in euthanasia and the doctor in Australia being called Dr Death. That does not happen in hospices, does it? Why does it not happen in hospices, that doctors get labelled as Dr Death?

Prof. Johnson: Because they care for the patient. They are not coming up as an actual event. We are talking about an event here where you come up to a patient, you mix up things in a syringe. The actual giving of this you have got to think about.

Mrs Hannan: Why do doctors have to do that?

Prof. Johnson: Why doctors have to do that is a very good question, but that is what is being proposed, I think, that doctors should be the people who... the caring doctor is the person who should actually do it.

M rs Hannan: What we are looking at is medically- assisted dying but -

Prof. Johnson: Well, it says medically-assisted dying, doesn’t it?

Mrs Hannan: Yes, that is what it says. That is what the title of the legislation is, medically-assisted dying, but what I am saying is: you are saying about the doctor-patient relationship and the doctor looking after a patient one minute and then killing them the next minute. This seems to be what you are saying. It would not necessarily be like that, surely. Patients do die. You have had patients that die in your care.

Prof. Johnson: Indeed, all the time, yes, but I am not



coming up to them with a mixed-up syringe to a fully competent mentally-alert patient and saying, ‘Right, now we’re going to put this into you,’ and the people next door know we are caring for patients and trying to relieve them, give them a good death. That is quite a different matter from what is being proposed.

But you are quite right, I think that if you did introduce legislation, I think doctors should have nothing to do with it at all. I think the caring doctor’s only responsibility should be to give the facts to his patient and then you could arrange for technicians to be trained to do this, out of the caring context, and then in the same way as a patient might say, ‘I don’t want anything to do with you now, I’m going to go off to a faith healer or a quack person to have my treatment,’ and then they would do it and people could train to do it. I must not suggest that this Committee should be the first to train, but ordinary people, people who are not doctors, could train to give this.

But I think you have got to realise it is not a nice thing. The experiences in Holland are that it can be quite unpleasant. People can vomit, they can come awake, alert again in between. People, think of it as a very sort of nice, tidy, simplified thing that a doctor can go and do without any sort of emotional involvement and I think that is not so and 1 think that you have got to think very carefully about how you would actually do this. But I think there is a difference between a patient dying, who I have been caring for and the other patients on the ward have seen me coming, helping them and me coming up with a specially prepared syringe and drip and the patient saying, ‘Now, this is it,’ and people hearing that. That is a different thing all together in the care of a patient.

Mrs Hannan: Isn’t that because the patient has requestedit?

Prof. Johnson: Yes, because of the circumstances in which it is done and they know people have come along and signed forms with them. They have seen the lawyer, whoever it is, coming to check their-

Mrs Hannan: Where is the autonomy of the patient in this then? The patient has asked. You talked about one case where the patient requested on a number of occasions and then you found out the reason why, but if we are talking about a person who is extremely ill and terminal - not incurable, terminal - that is going to die in the next week or very seriously terminally ill. They are going to be given painkillers anyway, and they are going to be given the drugs that you have spoken about and it could be that they would die earlier, because they have been given these drugs, than they would otherwise. People know about that in hospitals, the patients next door.

Prof. Johnson: What is the point of, if a person is going to die in the next few days, going through all this legal process of having a special way of killing them? I cannot see how you have helped anybody then, it is a non-sequitur. If you -

M rs Hannan: They have made the decision that -

Prof. Johnson: But surely they should be making that decision, in a sense, much earlier in the process. I cannot

see this being relevant to those sorts of people, although that is what is said, I think, in some of the details. If they are well cared for, peaceful, at that stage, I do not think this would be a very common request at all and if you are only changing the life —

M rs Hannan: If their pain is getting greater and they are not able to cope with their pain, even through all the drugs, which you have said yourself does not necessarily always work.

Prof. Johnson: But it nearly always does. I think in that situation you would just continue to do that. I cannot see the point of introducing a whole lot of legislation for three or four days. That is what you are saying, a huge complicated... Altering perhaps the whole attitude of professions for the sake of a few days in a person’s life who is being cared for in the ward carefully, or in a hospice. This will presumably be requested in hospices, as well, where they are working very hard to relieve symptoms. So, I think if you are talking about the last few days of life, you continue what you are doing well, which is giving them gentle and hopefully pain- free care.

M rs Hannan; In your area, do people who are terminally ill commit suicide, in your knowledge?

Prof. Johnson: No, I think that 1 have got no experience of anybody committing suicide. I was talking to a person who ran a big hospice - 10,000 patients a year - and he said that two had committed suicide out of all the patients he had had in there over... I am sorry, 1,000 a year, so it is 10,000 over 10 years. Two have committed suicide.

I have had no patients, but I am glad you mention that because when I was a student, one of the reasons for not telling a patient the diagnosis - and we were told not to tell them, or even tell them a lie, about their diagnosis, as students 40 years ago - was that the person had once had somebody commit suicide when they had been told the diagnosis and so he said, ‘I will never tell anybody again that they have got cancer.’ That is what the hospice movement has changed and the more open we are with people, the more we explain things and the more we support them as we explain their illness to them, the less and less this becomes an issue.

I think suicide is very rare. Those were the figures: 10,000, 1,000 a year for 10 years, it had two suicides from people.

M rs Hannan: Thank you.

M r Downie: Yes, Professor, there are a couple of areas I want to question you on. First of all, I would like to ask you if you have had experience during your career of dealing with a patient who has perhaps made a living will or expressed a wish to opt out of certain types of treatment, and how do you deal with that, knowing perhaps that you could be of some assistance?

Prof. Johnson: Living wills in the UK have not really been very prominent. There have been a lot of studies of living wills in other countries. The great difficulty is to define the exact circumstances in which that living will will act. 1 have known doctors who have said, ‘I don’t want to be resuscitated if I come in with certain conditions,’ for



example.When you say, ‘Look, what do you actually mean? Do

you mean you don’t want to have your heart treated when you have a heart attack?’

‘Oh no, I didn’t mean that. I mean 1 don't want to be resuscitated.’

‘Well, in what circumstances don’t you want to be?’1 have had only one or two where there has been... I

cannot think of anybody, where there has been a legal, living will that we have had in the notes or in the patient’s papers. So the difficulty is defining the circumstances ahead of time, 20 years ahead.

The other interesting experience of living wills which has come out of some of the European countries is that the more experience that patient has had in hospitals with illness between the time they made the will and the time they actually get to a serious event, the less they want to have what they put in their living will. You would think it would be the other way round, wouldn’t you? You would think the more experience they had, the more they would want it, but it works the other way, and a living will they make when they are a fit 40-year-old, saying, ‘Well, I couldn’t possibly cope in that situation,’ when put in that situation, the more they want to hang on to life.

Mr Downier Thank you. The reason I asked that is because there is a groundswell that living wills and perhaps the progression of passive euthanasia are going to become more prominent.

Prof. Johnson: 1 think that power of attorney is probably a better way of managing this than a living will. It is finding the will. Does it get stuck at the back of the notes? Will you get hold of it when you need it? Enduring power of attorney to a respected person I think can handle this better because then you can look at discussion of the events and things like that. I, for example, have had nobody who has come into casualty department either, having taken an overdose, who has come with a living will saying, ‘I don’t want to be treated for that.’ Maybe some people are having this but, of course, it has not had legal status in Britain, in the UK.

Mr Downie: J would just like to go back now to the discussion you were having with my colleagues about the delivery of some sort of euthanasia in the NHS context, where you alluded to the difficulties that could exist where doctors had opted out, a doctor had opted in. I would just like to get your view on how you would see this, when we have a National Health Service which is dedicated to looking after people’s needs and providing care, and would you give me a view whether you would perhaps think that, if legislation came in to provide a route for euthanasia, this would be better practised other than within the National Health Service?

Prof. Johnson: 1 think you might get special clinics being set up. What I have said before, in my further evidence, is I think it is very difficult to combine these two, the ongoing care for the patient and then this. You might have to set up euthanasia clinics or something like that as a way of handling this.

If you are serious about a conscience clause in this, conscience clauses do have a way of getting not respected. If I may illustrate, it affects appointments. I could see if you were appointing somebody to a care-of-the-elderly post or

something like that, they would be asked at the interview, ‘Do you go along with the euthanasia legislation or do you want to opt out?’ and they say, ‘No, I want to opt out,’ and they will not get appointed. This has happened, of course, to a large degree in the abortion law in the UK. If a person does not want to get involved, they are just not appointed to the job, so they are not in the situation where they have to not do it at the time. So, I think you would have to make some arrangements other than just in the ordinary National Health Service care.

Mr Downic: Thank you.A theoretic question really, but have you ever felt during

your time, your career as a consultant surgeon, that if it would be possible to end a person’s life by assisting in some way, the pain and suffering was so great that you would perhaps be tempted?

Prof. Johnson: No, I truly have not in that situation. I think you have got to realise doctors are human and I have often felt a sense of relief, when a patient has died who I have been struggling with for a long time and who has been a great burden to me. Doctors have emotions and weaknesses, and I have been relieved, and this is another thing that worries me about legislation such as this. Sometimes it is a relief when the patient dies to our own strained emotion, and if this was allowed I think doctors, again, would more and more use this, as a means to relieve their own anxieties and worries.

I was talking to a doctor the other day, this time caring for people, and he said, ‘Please don’t give us this power; I don’t think we can handle it.’ I was driving across to Manchester Airport yesterday, I passed a place called Hyde where a certain Dr Shipman... I wonder if he started his career in this area out of compassion for people? 1 do not know because he has not spoken, but I can see that doctors are weak and they are human and they are not just perfect automatons that can be put in law, and I could see some doctors seeing this as an easy way out for them, as well as for their patient.

You mentioned autonomy. Autonomy is fine, it is a lovely concept. In fact, Prof. Gray, the extremely atheistic philosopher, says it is a Christian concept, which is interesting. He says autonomy is a Christian concept, but it must be within boundaries and autonomy is not in isolation, and relatives and families are getting very complicated now. I do not know, again, if it is happening on the Island, but we have so many splits in families, so many relatives wanting different tilings, the effect of different relatives’ opinions on this could get extremely complicated. Some want the person to die, some do not want the person to die. Some want the money, some want them to wait so they have the money later. These are the sort of issues you have got to grapple with when you talk about autonomy for an individual patient. A patient is not in isolation, and at the bedside it is jolly complicated and a burden for doctors.

M r Rimington: In your introduction you mentioned Oregon and raised the issue there of the reasons that people have put on their requests and that they were increasingly for non-pain reasons. Do you have knowledge of the Oregon statistics?

Prof. Johnson: I am quoting from memory, this is the trouble. I had it the first year it was 12 per cent, the second year it was 20-something per cent and I think the peak it



rose to was 50 per cent or 60 per cent and then it levelled out. You may have them in front of you. I have not got them in front of me.

M r Rimington: Luckily, I have. But if one is to introduce a statistic like that, should it not be matched with a statistic for how many of those requests were either granted and then of the original requests, how many of those actually came to fruition at the end?

Prof. Johnson: At the end, yes, because it is a very small proportion of the -

M r Rimington: Yes, I would like you to comment on that. I understand that the majority, because your description of the conflicts have been predominantly, if I might say, doctor-focused or hospital-focused and the majority of the people involved in Oregon are within the hospice programme, who have made the request through that programme rather than being in the hospital ward scenario, and that, I think, as you said, the statistics would show that, of the original requests, a quite significant proportion are not granted and then, of those that are granted, a very small proportion will actually come to fruition.

Prof. Johnson: Why do you think that is, though? Why do you think that they do not come to fruition?

M r Rimington: I was going to ask you. Is it because of the very things that you said, that there are other reasons sometimes behind this and that it is possibly a call for help in whatever direction, and that with the appropriate counselling and assistance that is within the hospice programme, the palliative care programme, then that can be. But then there are still those individuals with either a particular strength of feeling in that direction or particular medical conditions, or whatever they feel that now they wish to continue.

Prof. Johnson: Yes, they may see it as a back-up if care is not provided. The figures I have got, as I say, I looked at the figures of a big Australian hospice. About 60 per cent raised the issue when they went into the hospice but, of course, none actually came to it, because it was not legal in that part of Australia at the time. So I think you are perfectly right, that with good care and good counselling the numbers become very small.

M r Rimington: Would this not then negate some of your concerns about its impact within the health service, in that it is there as part of the overall range of - a horrible thing to say - options in certain very tight circumstances, but would in fact be the numbers. It would not be, ‘Ah, he’s done two, he’s done three1; it would be struggling to find somebody who has done one?

Prof. Johnson: But, you see, if it becomes an option, why shouldn’t it always be an option? Why shouldn’t it be a therapeutic option for everybody? That is’the way I think people might think of it. We will have this in our thinking and this, I think in answer to Mr Anderson, was about the gradual effect on doctors’ thinking. They say, ‘Oh well, let’s put this in to our therapeutic option: we can operate, we can give palliative care and this is a third option.’ I think that would not just be an option for the few.

M r Rimington: Are you aware of the most recent version of the Bill that has been -

Prof. Johnson: No, I have not.

M r Rimington: - looked at in the United Kingdom?

Prof. Johnson: Oh, the United Kingdom? •

M r Rimington: Yes.

Prof. Johnson: Yes, I am aware of the United Kingdom Bill, yes. I am not aware of your own.

M r Rimington: It does not exist, so you cannot be aware of it! Would you not agree that the latest version of the Bill, mcdicaily-assisted dying, in the United Kingdom is very narrowly focused and quite restrictive? I am not criticising it for being so, but it is very tight in terms of circumstances -

Prof. Johnson: It is tighter, I think, yes.

M r Rimington: - and safeguards.

Prof. Johnson: Yes, I still think it is extraordinarily difficult how you would actually have those safeguards. You have been to Holland, no doubt, and seen the Dutch experience. I have not seen it, but I have just -

M r Rimington: We have not.

Prof. Johnson: You have not, right.

M r Rimington: But we obviously have been hearingmuch.

Prof. Johnson: But I think there was a small proportion but a very real proportion where it was not voluntary in their experience. That is constantly happening and it has not gone away, so I think you have really got to look at the details of the legislation. You know Walton’s conclusion on the last time it went to the House of Lords in the UK, that he could not be satisfied that you could prevent the pressure - and the words he used were ‘real or imagined’ - on elderly people to go along with this - vulnerable people, he used the word ‘vulnerable’ people - how you could protect them from the feeling that they ought to. It may be imagined pressure and not real pressure from their relatives, but it is there, and those were the key words that he used. I have got the quotation somewhere, but what he actually said was the key words that made his committee decide against it. I have got the quotation here:

‘Vulnerable people - the elderly, lonely, sick and distressed - wouldfeel pressure, whether real or imagined, to request early death.’

Mr Rimington: Obviously the Dutch experience has been well trailed -

Prof. Johnson: It has, yes.M r Rimington: - and we find that we have different



versions of the statistics placed to us, and the one that you relate yourself of the numbers of involuntary euthanasia has been explained to us that, in simplistic terms, looks potentially alarming, but behind those figures there are actually very clear explanations of what that involuntary activity means, and that those figures for involuntary euthanasia compare statistically to the involuntary euthanasia which takes place within hospitals across the western world, but within the Dutch context it is being closely looked at, and a figure has been put on it in relation to the whole.

Prof. Johnson: But it must have been within the legislation that it would be... They must document - or don’t they document?

Mr Rimington: It was an analysis of the... Well, no, because they would be prosecuted.

Prof. Johnson: They must have them on the register as -

Mr Riniington: No, the Remmelink report, if I remember, was a confidential study of people within the hospitals who were in those positions and, obviously, a practitioner who has done something which might be outside of legislation would not be registering that. So, it did not come from registration within the law, but actually a study of what is taking place. Is there a comparison that there is involuntary euthanasia taking place everywhere?

Prof. Johnson: All I can say is that not in my experience on my set-up. Double-effect, yes, but 1 think that is a very overrated thought, really. It does happen sometimes, yes. Adequate pain relief can shorten life, but it may not actually and severe pain can shorten life too, so I think that it is a difference of intent is the key thing and the difference of the action and its effect, the difference between that and good palliative care.

But 1 do think, to come back to what we said earlier on, just having a hospice is not the whole total of care and it has got to influence. I am speaking, as you asked me to, from my experience as a hospital surgeon over many years and of course most of the deaths take place either at home or in a general hospital, not in a hospice. The hospice is a small proportion and we must not look at one thing and say, ‘Oh, the hospice will solve our problems; send them off to the hospice.’

Good palliative care has got to infiltrate the whole of practice, and I heard a GP say to me the other day they are really satisfied with a good death of a patient at home, and more and more GPs are saying that they are really working to produce a good death at home, with all the care and the family around them and that they see it as a real triumph now of medical practice, which again would never be talked of before. It would have been a failure: ‘I haven’t managed to save this patient.’ So, that attitude is getting through to especially the younger general practitioners. Now they see this as a major responsibility in a home. And, of course, many patients would prefer to die at home, if they could- not in a hospice.

Mr Rimington: In your original letter of evidence to us - and the expression has been introduced briefly - you used the expression ‘slippery slope’, admittedly only very

briefly on both occasions. Given that the proposed legislation is very narrow and very focused, is it possible to conclude that, in legislative terms, the slippery slope is working the other way, in that, in fact, it is tightening up?

Prof. Johnson: I don’t like the ‘slippery slope’: it is a sort of expression that is thrown about. I tried to translate it into French, once, and it ended up as a ‘soapy slide’, 1 think, because they do not have such a word! It is changes in attitude, as I said earlier, that worry me: subtle changes in attitudes that take place. All we have to go by in the UK, perhaps is the abortion law, which, of course, slid very quickly from what was hopefully intended to be a relatively, but not very restrictive law to be being abortion on demand. That happened very quickly indeed. Now, that was a very loosely worded law, I do agree, a very poorly worded law. It may have been intended to allow this to happen when it was first drafted because it used very vague expressions, but 1 do not know - 1 am not a lawyer - whether you can in fact get a tight enough framework to stop this happening, but as 1 say, the Belgian experience does not encourage me.

Mr Rimington: You did raise that article, the fact that there are two people, whoever, who are raising this issue of people who are not confident about the whole business, i.e. how the law deals with their particular situations, does not in itself negate the whole process and they have no idea what -

Prof. Johnson: They know what is going to happen.

Mr Rimington: They know what is going to happen. Their views may be completely ostracised and disregarded.

Prof. Johnson: Yes, but the climate of thinking changes and I did say that we have got very influential philosophers writing prize-winning books saying this, that the value of children is not very great. As the population gets older and older, can you not see financial pressure becoming an issue here? I can. I can see it very clearly; a great increase in the number of elderly people and the Health Service trying to grapple with looking after these. I could see in a few years’ time all sorts of other pressures, once you have a law to allow this, strong pushing coming in to widen that, to widen it, strong pressure.

That is why I just quoted that, that they want to widen it almost as soon as it has started, but J can see this happening, in again a very subtle way, from the real burden we will have of looking after elderly people, which is us in 20 years, in a few years’ time.

Mr Rimington: Okay, thanks.

The Chairman: Thank you. Malachy?

The Clerk: Prof. Johnson, do you see any material difference in the conclusions you have suggested to the Committee between passive euthanasia and active euthanasia, if you accept that distinction?

Prof. Johnson: Yes, I do see a distinction. Some people do not, but I have always seen it is a difference of intent and a difference of result, because I have had a number of patients where I have agreed not to give antibiotics or not



to treat certain conditions and that has not actually stopped them recovering. I remember very well a patient in intensive care: we said ‘we won’t give antibiotics’ - no, she was not in intensive care, she was in a general ward - and then she actually recovered spontaneously from this and went out. So, there is an actual difference in result from this. Obviously, we are not talking about that, perhaps, in this situation, but the passive side is not giving people painful and often ineffective treatments - 1 think that is what you have got to think about. Often these treatments are not effective that we say we are giving to them, and we stop giving those.

When you come to autonomy, yes, of course a patient has got a right to refuse an operation, and I have had a number of patients who have refused my operation, and they have died as a result and I, as a surgeon, cannot operate on them without their permission, unless they are unconscious and unless I feel it is really in their best interest. So, if you like, you could call that passive euthanasia, that they have refused my treatment.

The Clerk: Would you actually say that in perceptual terms passive euthanasia is not really euthanasia at all?

Prof. Johnson; I do distinguish between that, yes, between withdrawing or withholding and a direct intentional act and, certainly, in practice, as I have said before to a number of questions, it is actually very different for the person, the people involved, at the coalface.

The Clerk: Do you think that any of the same sort of concerns that you have expressed about, if I put it this way, real euthanasia, would arise in the context of patients actually saying that they did not want a certain type of treatment?

Prof. Johnson: There is a difference, as I think I said in my original letter. I think there is a difference between a person having the right to say, ‘I don’t want you to do this to me,’ and having the right to say, ‘I want you to kill me.’ I think there is a very important difference there.

The Clerk: Do you think patients would be under the same sort of pressures, that there would be the same sort of dangers surrounding a request by a sick, elderly person not to receive a certain type of treatment?

Prof. Johnson: I suppose they could. Pressures from relatives, you mean, and things like that?

The Clerk: Yes.

Prof. Johnson: Yes. You see, we are very particular, of course, when it comes to consent. Relatives cannot give consent on behalf of a competent adult. I imagine the same law here as it is in the UK and the whole idea of asking relatives what they wanted has actually changed hugely, too, in my 40 years’ experience, and I do not know whether the pressure would be the same. I have not had any situation where I can think that there was relative pressure on them not to refuse it. It has always been the opposite, in fact, in my experience. When the patient has refused, it is the relatives who say, ‘Try and encourage them’, and say, ‘Can I talk them round to having this?’, once they have understood that it could help,

The Clerk: Have you seen any examples of patients who

have requested not to have certain treatment and probably end up in their dying sooner rather than later?

Prof. Johnson: Not to have a life-saving treatment, do you mean, or painkilling type of treatment?

The Clerk: Principally life-saving.

Prof. Johnson: Yes, I can think of a handful of people who have actually refused to have a potential life-saving operation, but it has been a handful only in my time: very clear cases where, yes, if they had had it... You see, many of the situations that we see they are unconscious anyway. They are brought in after a severe accident and you go ahead and do it, assuming they would like it. We have got to make the assumption that they want the treatment. That is the only way you can work in that situation. Or they have been in intensive care where they have been unconscious. But to come back to the situation where they are fully conscious, know what they are doing, refusing carefully, I think it has been a very few once you have talked to them about the implications of it.

The Clerk: This would arise in the context, would it not, of what are commonly called life-support machines, life-support systems?

Prof. Johnson: No, 1 think that is quite a different situation when you have got somebody on a life-support machine and I do not think that should be confused with active euthanasia. You mean taking people off life machines?

The Clerk: If a patient said, ‘Take me off.’

Prof. Johnson: Well, they cannot if they are on a life machine.

The Clerk: You mean they would not be conscious enough to do that?

Prof. Johnson: Yes, often. If they are on a breathing machine, they are unconscious because of the effect of having the tube down them and things.

M r Rim ington: Do you have discussion with the relatives?

Prof. Johnson: No, the relatives have not got any rights there.

M r Rimington: No, but there are discussions.

Prof. Johnson: You can have discussions, yes, but they cannot tell you to do it, as you know, legally. I think a lot of people think they can and a lot of the general understanding is that relatives can speak on behalf of their unconscious relative.

No, I am thinking of the equivalent situation to a person asking for euthanasia who has to be fully conscious, compos mentis and mentally sound. That is vanishingly rare, once you explain the implications of it. Once it happened to me when a colleague of mine, a junior colleague, explained to him in vivid detail the possible complications of the procedure, so vivid, because he felt he had to for legal



reasons, that the patient said, ‘Well, I’m not going to have that dangerous thing,’ and took himself out of hospital. It was actually a misunderstanding, really, of the balance of risks, which is very difficult to get across to patients and it is another issue. They do not understand necessarily the sort of risks that you are trying to explain to them because you are doing it in statistical terms and they are trying to understand the risks of not having treatment and the risks of having treatment

The Chairman: Could I just revisit some points that you have been good enough to raise? First of all, I think you described it as a large incidence of people not being appointed to posts - presumably you were referring to this in the UK and maybe you could clarify that - for healthcare professionals who choose not to opt in to termination practices. Can you prove that or can you direct us to proof?

Prof. Johnson: I have seen two surveys. Now, it depends who does the survey, what questions are asked, but one said 50 per cent of doctors would not be involved, the other said 75 per cent of doctors would not want to be involved, so two recent ones. You may have your own surveys in the Island, I do not know.

The Chairman: No, the point you raised was that that would lead to them not getting certain appointments.

Prof. Johnson: I can see it that if they were wanting to be appointed to certain posts and a care-of-the-elderly post is something that I think is particularly relevant here, not just palliative care and cancer. Again, it would not happen immediately. There could be an effect that people would be asked at the interview what their attitude was and if you were trying to provide a service in this respect and they said, ‘Sorry, I am not going to be prepared,’ they might not be appointed. All I can say is this has happened in the case of abortion. So, what I was saying: a conscience clause in an Act does not always work, but if it does, it can actually lead to either a two-tier system, two groups of doctors, those in and those not, a split medical profession, or it can lead to recruitment problems.

The Chairman: Yes, and where could you direct us to see the evidence to support that assertion?

Prof. Johnson: The questionnaires? I could probably get that for you.

The Chairman: And the evidence to support the consequential assertion that people are not getting appointments, a large number in your description.

Prof. Johnson: We do not know in this respect, and the point I also made was: in the UK, a number of the doctors, a bigger proportion of the doctors working with elderly people, may be from ethnic minority groups. That was the other point I made. But all I can say is I have got evidence that either people who would not do abortion would not even go for the post that involved abortions or they would not be appointed to it. It was only equivalent to the abortion experience. 1 have got no experience, say from Holland, whether this actually has happened to doctors. I do not know but you may have that data. All I am extrapolating is from

the experience after the abortion law was introduced in the UK, so I cannot actually give you anything for euthanasia practice, but I can give you those surveys of abortion, who would be involved. Would you like those?

The Chairman: Well, any evidence to support the assertion that you made to us would be welcome, yes, please. If we think about jurisdictions that have made the considered decision to introduce voluntary euthanasia legislation, would you agree that they are all mature, democratic jurisdictions? I am thinking of Belgium, Holland, the State of Oregon.

Prof. Johnson: I do not know the State of Oregon. They have done some very interesting things there in other areas, as well, but yes, I think they are democratic.

The Chairman: And the healthcare professionals who opt in to accede to the persistent and informed requests of patients to provide a euthanasia service, they do that on the basis that (a) they will, as you say, attract perhaps tabloid epithets and (b) that they might find some difficulty in their professional relationships and maybe even, as you described, their professional careers. What is the situation, from your understanding, not just for doctors but other healthcare professionals who have made that professional choice in those places?

Prof. Johnson: in Belgium or... ? Yes, I just have not got the data on that, but I could find it, if that was helpful.

The Chairman: But they are not excluded from the Dutch equivalent of the BMA or -?

Prof. Johnson: Oh, no, I do not think so. No.

The Chairman: They are not on any particular list of doctors who - ?

Prof. Johnson: Again, 1 do not really understand the question. I have not studied that particular aspect.

The Chairman: Would it be fair, given your expertise and experience, that if that was the case probably - ?

Prof. Johnson: No, I cannot say anything until... I would be very interested to find that question out actually, yes, whether it has become specialised. I would expect it to become specialised amongst a certain number. That is why it would happen with time, I think. You would get a specialist group who would set up a clinic of some kind to do this, rather than it become a general thing. You may have, again, the figures about the number of Dutch doctors involved in these figures, whether it is some doctors doing quite a lot or a few doing a little. I do not know the answer to that question but it must be in the data there.

The Chairman: And then finally, you touched on a trend in Canada where your colleague foresaw that there would be a split between what 1 think you described as a Hippocratic camp and a non-Hippocratic. Would you be able to expand a bit on that and also give us your opinion on how that might come across the Atlantic to the UK?

Prof. Johnson: Yes, I think quite a number of doctors



have actually signed up to a new form of Hippocratic Oath and they have called themselves the Hippocratic Group of Doctors, saying, ‘We are not going to go down this line.’ The size of that I am not sure, and he was just looking 10 or 20 years down the line, and I think you could well get a polarisation, two groups of doctors. I suppose again you could equivalent it slightly to the situation in the UK where Roman Catholic doctors will not do abortions, so you get a group that will not and a group that will and, therefore, you will get one sort of doctor who is practising in a different way. 1 think that is the sort of thing that they may say, but you would declare that you are not prepared to do that.

The Chairman: And that would be the same for the UK and Europe as it would in Canada?

Prof. Johnson: 1 do not know what would happen about that; it was just an international meeting where we were discussing this issue, and he just said he could see this happening in Canada, where, of course, you perhaps see the Catholic influence in one part is strong. I am not, by the way, a Catholic. I am a Protestant Christian, when 1 said I was a Christian. But I could see that in Canada it might be more polarised than it would in other countries, but all I am saying is that he saw this happen.

I asked the Dutch person whether he could see it happening in Holland. He said not immediately but further down the line he could see it coming to a stage where a group like the Hippocratic group did back in Greece saying, ‘We are not going to practise, we are going to have this, we are going to practise to a different ethical standard from our colleagues.’

The Chairman: Is that compatible to have two camps working complementary to one another?

Prof. Johnson: I think so, yes, as long as the patients will know which is which. 1 think you would have to declare it, that is the important thing in all this: to be open and honest about it, not pretend you will and then not, or vice versa.

The Chairman: Thank you for your candour earlier in saying that practice decades ago was based on - perhaps ‘deceit’ would be too strong - but non-disclosure.

Prof. Johnson: It certainly was. I fought very hard and my ethical teaching was that truth is a fundamental thing to start with in any ethics. You cannot begin until truth is at the top there, and I know in my time people were actually told to type out false reports on specimens to say they were not cancer. You cannot believe this now, but I would say it is the hospice movement largely that has influenced this, because you cannot tell somebody going to a hospice, they are going for recovery by the seaside, and you had to be honest with them when they went, and this has made people be honest. So, this whole talking people through their illness gently and carefully has transformed, over these 40 years, the whole care of patients for the better. We often say things have got worse with time, but I think there has been tremendous -

The Chairman: Yes, and that is a function of making this a patient-centrcd process.

Prof. Johnson: Patient-centred, yes. I saw myself today

as speaking from a doctor’s viewpoint. 1 thought that is what you asked me to do but, of course, a doctor has autonomy as well. Of course, patients have autonomy, but neither the doctor’s nor the patient’s autonomy is unlimited autonomy just to do what they like.

M rs Hannan: When you are suggesting that the medical practice will divide out, one which you arc saying is the Hippocratic aspect -

Prof. Johnson: Yes.

M rs H annan: - why are you suggesting that will happen?

Prof. Johnson: Because a group of doctors will say, ‘We are not going down this road of euthanasia.’

M rs Hannan: So, what is the difference between the other group then, the Hippocratic'group? What will they do differently to the people that could be involved or do not have a great objection, because there are not many doctors that are involved in euthanasia. But what is the difference between them? Surely they are going to be looking after their patients, they are going to be giving them carc, they are going to be... You are suggesting there is one that will kill and there is one that will not, when we all die?

Prof. Johnson: No, there is one that will kill intentionally and actively, and there is one that will say that is a step too far. That is actually what will happen. We all die, absolutely, but we are not all killed, and we do not all ask people to kill us.

Mrs Hannan: Is it killing? What we are looking at is voluntary euthanasia. That means a good death, which is what you talked about before.

Prof. Johnson: Of course.

Mrs Hannan: When people die they go into hospices. They are helped with their pain and, ultimately, they die. There are not many people that are relieved of their pain and live for a very much longer period. But you are suggesting that there is the ‘Dr Death’ and there is the other very caring doctor and never the twain shall meet.

Prof. Johnson: No, I am not saying that ‘Dr Deaths’ are not caring, but they are saying, ‘When it comes to a certain point I am prepared to kill my patient.’That is different from the care, it really is. You cannot say that you are going to go up in cold blood to a fully conscious patient and you are going to kill them. 1 cannot see that you can get away from that as a direct act. They may still do it with compassion in their mind, although over the 40 years -

Mrs Hannan: But it is not like you and me today sat there and waiting for the doctor to come along and whatever, however; it is somebody who is seriously ill, terminally ill, who would request this. I could not see anybody -

Prof. Johnson: They must be compos mentis, fully alert.



Mrs Hannan: Well, they would have to be to make that request, unless they have got a living will, but I just think that you are seeing it as very black and white, and I think there is a difference. I think there is, and I think you are suggesting that there is one lot of people out there who are uncaring and will kill people and other people who are caring and will not, but we are all going to die at some time.

Prof. Johnson: No, I have never said anything about the other group being non-caring. Please, I talked about the doctor who had cared for his patients lovingly and carefully for weeks and months and then is asked to kill that patient at the end of all that care. I am not saying they are uncaring. They could become uncaring. As I have said, I think this is one of the troubles: they could become uncaring doctors; but that is not the motive that doctors involved would be... But I still think there is a very definite distinction between direct cold-blooded killing - which it is and you cannot get away from it - and gentle dying.

The word ‘euthanasia’, perhaps, has been taken out of context because the whole of palliative care is euthanasia, which you rightly point out; it is a gentle and good death, but this is a step too far. Jt gives doctors powers I think they should not have, or the State powers it should not have, and there is a whole group of doctors out there who will say, ‘I am sorry, I do not consider this part of my medical care and training to go that one step further,’ because of all the attitude changes I have mentioned, the way would open up.

It is not the same as an unconscious patient on a ventilator slowly drifting out. It is an intentional act with me going up with a syringe and injecting a lethal dose and I would find that - and many of my colleagues would find that - extremely difficult. You cannot get away from it, that it is an intentional act of killing and it should be called that, I think. ‘Suicide’is a better word than ‘euthanasia’. ‘Physician-assisted suicide’ is, ] think, a much more honest title, which I think are the words used in one of the Acts I have seen.

M rs Hannan: Let us look at the hospice movement. The hospice movement is actually there to give palliative care, but many of those patients want to live and yet they are going to die, and it could be that in the same aspect they are given sedation, they are helped with their pain and the result is that that person dies.

Prof. Johnson: They are going to die, but the intention is completely different. You are giving them pain relief. You are helping them to have a gentle death and to stay conscious as long as they can during that process.

Mrs Hannan: I am just concerned about you using these two sets of doctors as one on one side, one on the other, when we do have a hospice movement. There is a hospice movement throughout many of the countries that we have spoken about - even Oregon has got a hospice movement now - and at the end of it people are unfortunately going to die.

Prof. Johnson: The whole process is about caring for that patient and giving them a gentle death but, as I say, there is a very strong group of doctors in many countries who say, ‘1 consider that not part of my medical training practice or ethic, to intentionally go up to a patient and kill them, and the patient has not got autonomy to such a degree that they

have the right to request me to do that,’ and, as I say, Diane Pretty was tested right up to the European Court, very clearly in great detail, and they said no, that was not part of the European Declaration on Human Rights, to have the right for somebody to kill you. I do not see how you can get round the European Human Rights Act. Any legislation that I see- again, I am not a lawyer - would be countered -

Mrs Hannan: But she was not asking for medical help, was she? I think we ought to get that quite clear.

Prof. Johnson: So, why should doctors be different from that? Why should you exempt doctors from the Human Rights Act and not a relative? Why should we be put in a special category?

Mrs Hannan: I just wanted to make it quite clear that she was not asking for medical assistance; she was asking for her husband to not be criminally involved.

Prof. Johnson: But if you bring in legislation you are asking for doctors to be in exactly that situation, aren’t you? You are saying that doctors should not be criminally involved if they do the same thing. It is precisely the same issue but you are applying it to doctors and not to a husband or relatives.

M rs Hannan: You would be developing a law that protected whoever was -

Prof. Johnson: I think you have got to ask whether that -

Mrs Hannan: And you are also protecting the patient because you would also be expecting the doctor to register that that person has been involved in a voluntary euthanasia aspect and also the doctor, so it would protect the doctor as well.

Prof. Jo h n so n : Are you, in doing so, actually counteracting the European Declaration of Human Rights? I think you have got to look at that from the legal point of view, carefully, because Diane Pretty’s case was tested right through that Court and was thrown out very firmly. So, you are saying that you want doctors, as a special group, exempted from that and, as I told you, I think doctors are a vulnerable group and they are not a perfect group and I think you are going a huge step to put doctors in that position. ‘Please do not give us that power’ would be the request of a number of colleagues I have spoken to.

The C hairm an: Thank you very much, Professor. Before we conclude, could I just give you the opportunity, if you want, to make any comments in summary or for qualification.

Prof. Johnson: Thank you very much. I think we have covered in great detail all aspects. I hope I have been of help to the Committee.

The Chairman: Thank you very much for your time and making the effort to come and visit us, and I am glad you have brought the good weather with you. I hope you will have a chance to enjoy the Island.



Prof. Johnson: Thank you. I had a bumpy arrival last night. My welcome to the Isle of Man for the first time was . interesting.

The Chairman: Thank you once again.Ladies and gentlemen, what I propose is we will have a

very short break before the Attorney General gives evidence, so perhaps if we could adjourn, just briefly, until ten past by the clock behind us, and we will reconvene at that time with the Attorney General.

The Committee adjourned at 12.05 p.m. until 12.10 p.m., when H M Attorney General was called.

Procedural

The Chairm an: Right, ladies and gentlemen, a pleasure to welcome Her Majesty’s Attorney General to the Committee. J think, sir, you are aware of the remit of the Committee and thank you very much for your attendance. 1 know you are aware of who the Committee all are, so we will dispense with personal introductions.

The format that we have offered witnesses giving evidence to date has been to offer them an opportunity to make an introductory statement, if that is appropriate, if that is what they wish, and then we go into a question-and-answer and then afford you the opportunity to make any concluding comments that you feel would be appropriate. Might that be an acceptable format for yourself?

The Attorney General: Yes, Mr Chairman, thank you.1 must say I was not aware that I would be required

to make an introductory statement or, indeed, to make a general contribution to the business of the Committee. As I understood it, there was a specific issue which the Committee were concerned about in relation to the law of the Isle of Man on the question of suicide, and it was in relation to that specific issue that I had come prepared. So, of course, I will try to help in any other way I can, but I am afraid I will disappoint the Committee if you wish me to elaborate further.

The Chairman: Thank you for that. What we will do then is go round the table and ask if there are any points particularly on that specific issue. David, can 1 begin with you?

Mr Anderson: Not on that specific issue, so maybe you had better go elsewhere, Mr Chairman, first.

EVIDENCE OF H M ATTORNEY GENERAL

Mr Downie: Mr Attorney General, I wonder if you could clarify for us what is meant: I will read to you a judgment that was made in the Diane Pretty case where she appealed to the Law Lords about the right for herself or her husband to assist her in dying. As you know, that case went on, eventually, to the European Court of Human Rights, but in both instances the judges felt that any arguments premised in respect for patients’ autonomy were outweighed by the State’s interest

in preserving life and protecting the vulnerable.I wonder if you could give us a view on what is meant by

the ‘interest of preserving life’, ‘protecting the vulnerable’ and, actually, does a person have the right to do what they want with their own life or are there legal implications? I know that when a person dies under suspicious circumstances or perhaps, sadly, commits suicide, their body is seized by the Crown and an inquest is held. So, I wonder if you could just give us an overview on how the law is, in relation to those issues.

The Attorney General: Thank you, sir; thank you, Mr Chairman.

I feel that these are extremely interesting and difficult questions in many ways and, as I say, I wish I had come better prepared to deal with them, but insofar as the issues are concerned, I think it is right to say that there is a legitimate interest in the State and in our country to preserve life, and 1 think that the Attorney General actually has a particular role in relation to that.

The Attorney General, on behalf of the Crown, of course, has a duty to ensure that the criminal law of our country is enforced and whereas the offence of suicide, which was contained within our Criminal Code 1872, has been repealed by the Criminal Law Act 1981, nonetheless we still have the offence of aiding and abetting another who wishes to commit suicide. So, to that extent you can see it is clearly set out that the State, as represented by the Attorney, has a duty and an interest to ensure that anyone who aids and abets another to commit suicide will be prosecuted and, indeed, there have been prosecutions along those lines in the recent past in our courts.

That, of course, is a rather stark way of putting it. Not all cases are as clear-cut as that where an individual is guilty of, and clearly guilty of, a breach of our criminal law. Far more interesting and delicate issues arise when we have someone like Mrs Pretty who was faced with a very drastic end to her life, one which the judges clearly had great sympathy with and, nonetheless, whilst identifying the terrible situation that Mrs Pretty and her husband faced, were determined to reiterate the duty of the State to preserve life.

It is, of course, a balancing act or balancing exercise. On the one hand, having sympathy with someone who is struggling with a terminal illness... and I have to say that I feel quite sure that the medical profession and nurses are very alive to the huge problems which face patients and, of course, they are increasingly experts in mitigating pain and suffering towards the end of a person’s life, all of which of course is entirely outside my competence, so I cannot really help the Committee on that at all.

But I am saying in a very roundabout way, and I apologise for that, that there is on the one hand the clear, black and white case where the criminal law intervenes, and there is a prosecution if someone seeks to aid and abet a suicide, and on the other, where a person is coming towards the end of his or her life, I think that the State recognises that in the treatment and care of patients perhaps the criminal law has to adopt a softer edge, if I can put it that way, and they are very alive to the hugely difficult issues which face nurses and doctors.

Of course, again, if the doctor or nurse errs too far and is seen to be accelerating death in an unreasonable way, then that person will be exposed perhaps to murder or manslaughter. But, of course, there is that again, perhaps a

House of Keys Select Committee on Voluntary Euthanasia — Evidence of Prof. A JohnsonProcedural

House of Keys Select Committee on Voluntary Euthanasia - Evidence of H M Attorney General


clearer case, and on the other hand a case where the patient is suffering intolerable pain and the duty of the medical profession is, as it were, to ease the passing. Hugely difficult questions which I think were recognised by the House of Lords in the Pretty case and they were invited by Counsel for Mrs Pretty to say that the Human Rights Convention gave Mrs Pretty the right to terminate her life with the assistance of her husband but the Law Lords felt that that was going too far, that you could not lay down a black and white rule, as it were, like that.

As I say, I have not researched the matter carefully, but it seems to me that the judges will recognise the huge dilemma that the caring professions have to face when people are reaching the end of their lives in very difficult circumstances. I am sorry, this is a very round and about way, but it is not an easy question to answer. There are almost philosophical issues and ethical issues raised by the points you have raised, sir.

M r Downie: Well, I think it highlights the complex nature and the very sensitive issues that abound within this particular subject. I do not know whether you have had any opportunity yet to cast your eye over Lord Joffe’s Bill?

The Attorney General: I have it in my papers. I have not considered it yet.

M r Downie: Right. One of the issues that arise is that currently the British Medical Association Royal College of Nursing, the vast majority of people working in the medical profession in the Isle of Man are bound by the rules and principles which those bodies adhere to. I think one of the difficulties that we face, as a Committee, in looking at legislation is that, at the present time, these bodies appear to be vehemently opposed to any change in the law.

I would just ask for an opinion, really. If the Committee were to determine that a Bill could go before the House of Keys and were successful, is there any way that the law in the isle of Man could be framed or couched in a certain way to give comfort to doctors who are working here, where they are obviously going to be in conflict with their parent bodies or with their governing bodies? I do not know whether a similar situation exists within the Law Society, whether the code of ethics applies there and applies here on a similar basis? It is a very interesting situation.

The Attorney General: Yes. To answer the last point first, the Law Society in the Isle of Man does adopt the same principles for dealing with clients as are adopted by their fellow professionals in the UK and that makes obvious sense. I think you will find that the Law Society’s practice rules here reflect solicitors’ practice rules in the UK and indeed, to the extent that they are relevant, the barristers’ code of conduct and etiquette, and that is entirely right, it seems to me.

The fact that we have a separate jurisdiction here, and we are very proud of it, should not lead to the conclusion that we should adopt different professional standards. I think we can always learn from the bigger jurisdiction which often has more exposure to these issues and more exposure to the problems and very careful research by the learned members of the committees of Parliament who look at legislation there, and it seems to me, certainly from a lawyer’s point of view, we can all learn from the very learned judgments of the senior judges in the United Kingdom.

1 do feel, I have to say, that it would be a very brave step for this Committee to recommend the introduction of legislation which was not in line with that currently in force in the UK. I think that it would create tremendous difficulties for the professionals in the medical world if they had to apply different standards in the Isle of Man than in the United Kingdom.

I suppose also if you look at disciplinary matters, if there were to be an allegation that a doctor or a nurse was guilty of professional misconduct in the Isle of Man and different rules applied here than in the United Kingdom, it would not perhaps be possible to introduce or to bring over professionals from the United Kingdom who could adjudicate those disciplinary matters. I think doctors need to have the comfort that if they are trained and they have their experience in the United Kingdom they can apply the same rules and practices here in the Isle of Man. That is my personal view.

M r Downie: I just want to broaden this a little bit, then, and ask you: obviously, with your legal background, prior to becoming the Attorney General, you were in private practice. Have you any experience of living wills and putting together a document that enabled a person to request certain things happen to them if they were suffering from certain illnesses or terminal illnesses, for instance, or in fact which led to them requesting a form of passive euthanasia?

The Attorney General: Certainly, when I was in private practice I never had a request for a living will. In fairness, I suppose the concept of a living will has probably developed over the last few years. 1 think it probably originated in America. It is more popular there. But at that time there was no request for a living will. I have, of course, answered questions in Tynwald in relation to living wills. Again, I would anticipate that these will become more formally recognised by the law, but I am not aware of any judicial authority on it at the moment.

/M r Downie: If a person went to an advocate at the

present time and made a living will, would that have some legal standing in the Isle of Man, if perhaps their wishes were not honoured when they went to hospital? Would it lead, maybe, a consultant to be in breach of some form of ethical misconduct?

The Attorney General: I think, as I indicated in my answers in Tynwald, a living will would, in my view, be recognised by the healthcare professionals to the extent that the living will did not contain directions which conflicted with the medical professionals’ view of the case. So, provided that the wishes were consistent with the patient’s welfare, the living will would be recognised.

So, I would imagine that if, for example, you had a situation where maybe the children of the family knew that a parent had made a living will and the wishes in that will were not being recognised by the healthcare professionals, it would be possible, I would imagine, for the family, for the children to go to the court and seek some sort of order that the wishes be adhered to. But it is a very difficult area. Whether the court would assume jurisdiction, I just do not know. It is an area we have not gone into yet.

M r Downie: It was suggested by our previous speaker,



Prof. Johnson, that perhaps a better way or a more positive way to progress a living will would be to appoint somebody with a power of attorney to act.

The Attorney General: Yes, well, of course, the concept of an enduring power of attorney is well known. We have had those in the Island for a long time and the Committee will no doubt be aware of the fundamental point there that even though you become incapable of managing your affairs, the power of attorney continues to have effect. Under the old law, as soon as you became incapable of managing your affairs the power of attorney came to an end, which was a nonsense really because the whole purpose of having the power of attorney was to ensure that it endured the incapacity. So I would have thought again that if you had, say, a son who had been given an enduring power of attorney by his mother, mother becomes very ill, the son would have a great deal of influence on the decisions which were taken in relation to his mother’s illness.

M r Downie: What would be the position then if a person got to such a state that under the Mental Health Act their rights had to be determined by an advocate who would be appointed by you, for instance, when a person becomes - 1 am not sure of the terminology, I do not know whether it is ‘insolvent’ under the Mental Health Act or -

The Attorney General: Incapable.

M r Downie: Incapable under the Mental Health Act. So, you would appoint somebody in that position, is that the normal practice?

The Attorney General: Not always, no. As Attorney General, under the Mental Health Act I have limited powers for dealing with a patient’s affairs. If there were to be some decision about the patient’s medical welfare, I would not have any jurisdiction in relation to that and the court would have to appoint a receiver and the receiver would have some role to play. Iv of course, do have standing to go to the court if I felt that a patient’s affairs were being prejudiced. If a complaint was made to me then I could intervene and apply to the court. That is not as a receiver for the patient, it would be as Attorney General.

M r Downie: The point I am raising is: that responsibility for someone’s care is opted out to somebody else, which further complicates the situation when you are talking about introducing legislation which could cover assisted euthanasia or assisted suicide. Okay, thank you.

M r Rimington: Forgive me if I am springing something on you, but, obviously, the Attorney General’s Chambers have constant contact with the authorities in the United. Kingdom in relation to the Royal Assent that is given for legislation that is passed in the Isle of Man, some of which is obviously the authority delegated to the Governor, but by no means all of that. If legislation were to be passed in the Isle of Man and such legislation was not there in the United Kingdom and appeared not likely to be there, would you foresee issues in relation to the granting of Royal Assent?

The A ttorney G eneral: Yes, Mr Chairman, Hon. Members, I think that one would anticipate some difficulty. I

think in the area of so-called social issues, which you might categorise this as being one, the UK in my view would be cautious about recommending Royal Assent in relation to a Bill which radically departed from the law in England.

The example I would bring to mind would be, I think, a Private Member’s Bill that was suggested at one stage in relation to the medical use of cannabis some time ago and a Bill was developed here and it was made quite clear that the United Kingdom authorities would be very reluctant to see the Isle of Man go off on a tangent because the medical case had not been made out and not been established for the medical use of cannabis.

I do not, obviously, want to go down that debate specifically, but it seems to me that that is quite a good example of the concern which we might anticipate if we were to bring forward a Bill which was against the current law in England. Again, my personal view, but that would be my expectation.

M r Rimington: Just to confirm, the UK does have the right of not granting Royal Assent, doesn’t it?

The Attorney General: Absolutely, yes.

The Chairm an: Is there a precedent for that situation, where we have passed legislation and the UK have refused to assent?

M rs Hannan: The radios.

The Attorney General: I suppose so, yes, in relation to wireless telegraphy and so on. The practice, I think, is that we always try to avoid such a conflict by having early consultation. It would now be with the Lord Chancellor’s Department (LCD). In other words, my Chambers, having received drafting instructions, would make early contact with the LCD and enquire whether there is likely to.be a problem with Royal Assent. So, often we steer clear of any such conflict.

The C h a irm an : So, you would have advice or notification or some indication from the UK, from the LCD or whoever, that there would be unease about assent for this specific legislation.

The Attorney General: Oh no, I have not even raised it with them. No, I was just speaking in the abstract in general terms. The only example that, as I say, came to mind was in relation to the Private Member’s Bill on cannabis.

The Chairm an: So, as I understand it, and perhaps you could amplify -

Mrs Hannan: Guernsey.

The C h airm an : Yes. Domestically, we can pass legislation as long as it is reasonable * the balance of that would be whether it goes through the Keys - as long as it affects us, notwithstanding your misgivings about being out of sync with the UK professional practices and the consequential issues that might bring, but that would not interfere with good government. There is a good government test and would this legislation, if it was passed here, constitute a breach of good government?



The Attorney General: In the context of medicare? Tynwald undoubtedly. Tynwald must be the ultimate arbiters of that, having consulted widely with the people who have the expertise.

Mrs Hannan: We do have a hospice movement. Do you think there are enough controls in relation to the hospice movement in relation to deaths that occur there, registration, those sorts of issues?

The Attorney General: I am certainly not aware of any problems in that respect. As Attorney General, I have never had any complaints or concerns registered.

Mrs Hannan: I am not talking about complaints. I am talking about the actual operation of care of patients and -

The Attorney General: I am not aware of any concerns having been -

Mrs Hannan: - consents and those sort of issues.

The A ttorney General: Outside my experience altogether. I am aware that there have been concerns expressed in England in relation to the issue of death certificates and so on and again, if best practice is developed there, I would have anticipated that the medical profession would want to adopt the same principles here.

The Chairman: Mr Attorney, could I ask you, you have described almost a spectrum of how you might anticipate the responses from the UK, if we were to proceed with legislation and pass it here about voluntary euthanasia. Tell me if you think it is fair to describe it as, at one end, raised eyebrows, I think you described, anxiety through to declining assent. What would your best estimate be of the response from that spectrum?

The Attorney General: It is difficult forme to comment because I do not know what the content of the Bill is likely to be. I do not know how the Committee, what approach you are formulating. As 1 say, perhaps in a very facile way, if 1 could just repeat the point that if we depart too far from the legislation in the UK we are likely to have Royal Assent turned down. The more that our legislation accords with the current UK legislation, the more likely it is, it seems to me, that the Royal Assent will be granted, but it is very difficult for me to give odds on what might or might not happen.

The Chairman: But it would be fair to say that the UK,'through Lord Joffe’s revised Bill that he has, accept that this is a legitimate issue of public concern and one for legitimate debate?

The Attorney General: Yes, and perhaps if I could put it this way, sir, that if this Committee were not sitting and this was not in the public arena now, I am quite sure that I would be notified of the Bill and the Act in Parliament, as indeed I have been, and I think it would be my duty to bring it forward to the Council of Ministers as a matter which requires attention. It is, in my view, entirely proper that our legislation should mirror the UK legislation in this area.

The Chairman: Are there any restrictions on our capacity to make legislation that would only relate to people

who are resident on the Island, say, so we could have perhaps in regulation a requirement that peoplcwould only be subject to legislation if they had been here and if they could prove they had been here for, say, six months. I am seeking to avoid the scenario -

Mrs Hannan: No, the legislation in the UK is 12 months, proposed.

The Chairman: Well, a period, a long-term period.

The Attorney General: Yes, I would have thought it would be very sensible to have some sort of connecting factor between someone who wishes to end his or her life here in accordance with Manx law and if there were not to be that sort of connecting factor then the danger is that you have people, patients, forum shopping or they find the jurisdiction which gives them the most easy answer to their problems. I think Switzerland has often been mentioned.

The Chairman: There would be no difficulty to have regulation or in legislation itself to tie that loophole very firmly?

The Attorney General: No, I think that would be very proper.

The Chairman: So death tourism would not be an option we need to trouble ourselves with, given that reassurance?

The Attorney General: Yes, I quite agree.

The Chairman.*' Yes, and in your opinion, voluntary euthanasia legislation or patient-assisted suicide - whatever the term we employ, but that concept - would that be an extension or could that be reasonably viewed as an extension of what I think you described as the ‘softer edge of medical treatment’ and the uncertainties around that?

The Attorney General: I suppose it probably is in the sense that the parliament here would be recognising that there are cases where a patient ought to have the right to terminate his or her life in extremis, when there is no way of avoiding this horrible circumstance that might be facing him or her, and that is a view that many people share and it is for Tynwald to assess whether that is a correct approach and weigh up the counter arguments. But I think that does accord with, as I said, the softer edge of medical treatment with which many people have sympathy.

The Chairman: Sorry, I am hesitating, Mr Attorney, because I had a question in my mind which has now escaped me so if you could just bear with me. But thank you. The remit we particularly asked you here for was to do with legal ownership of a person’s body. Are there any comments that you have not covered on that that you would like to expand on?

The Attorney General: To be frank, I was rather surprised to see any reference to ownership of a legal body. I have never really approached the issue like that before. I suppose I seem to recall in the criminal law books there are offences in the old days of body stealing and body snatching and so on, of corpses, but, more seriously, the individual

House of Keys Sclect Committee on Voluntary Euthanasia — Evidence of H M Attorney General


owns - if you can describe it in terms of ownership - his or her body and I suppose in many ways has the right to abuse that body as he or she thinks fit, provided that it does not breach the criminal law of our country. So, many people would be horrified at the things that others do to their bodies, but you cannot complain about that in the courts unless it offends our existing law,

The Chairman; Suicide did offend the law previously but no longer does, but aiding and abetting still does, just for clarity?

The Attorney General: Yes.

The Chairman: The question I wanted to conclude with was if we introduce this form of legislation, would that put us in conflict with either any international obligations beyond our relationship with the UK, or, indeed, with the contents of the Human Rights Act and the wider legislation of that?

The Attorney General: Well, it would be my duty as Attorney General to give advice as to whether the Bill accorded with the Human Rights Convention and, indeed, Human Rights treaties generally, and so, if I considered, on advice, that the Bill offended international law, international conventions, 1 would have to make that clear to Tynwald.

The Chairman: Presumably, Lord Joffe has been through the same considerations before he introduced his Bill.

The Attorney General: I would imagine so, yes: we normally find a certificate that it accords with the Human Rights Act and 1 would have to do the same thing.

The Chairman: On that basis, would it be reasonable to say that you would not foresee any conflict with Human Rights, if the UK has accepted it on that basis?

The Attorney General: 1 would be very surprised if my opinion contradicted the legal advisers in the UK.

Mr Downie: One area that is being progressed in other jurisdictions, and 1 can quote Oregon in this instance, is where assisted suicide or euthanasia is available for the individual who wishes, for whatever reason, to terminate their own life.

So, what 1 am suggesting is that they can apply to have a draught prepared and, provided that they take that draught themselves, there is a provision in the law to say that that is legitimate. So, that is taking assisted suicide to a new position, where it is self-administered. If that area were being pursued here in the Isle of Man and we, for example, were saying if a person wants to end their own life and they want to do it that way, provided they satisfy a number of criteria- which is the situation in America, as I understand - and they take that fatal draught, would you see the same areas of concern or future complication, when really you are not

actually involving the medical profession to the same extent? You are not asking someone to physically take your life.

The Attorney General: I do feel, with the greatest respect, this is an area I really cannot usefully comment on. Speaking entirely as an individual, there must be anxiety about that and we would just have to abide by best practice medical opinion, and so on, as to how that should be dealt with. Some might prefer to take the fatal draught in the privacy of their own home, others might wish to go into a hospital and have, perhaps, doctors supervise it. I really cannot say. I am sorry 1 cannot help you on that.

Mr Rimington: If I may just introduce, for the benefit of the Committee and the Attorney General, the House of Lords and House of Commons Joint Committee on Human Rights looked at the recent Bill from Lord Joffe, as the report is listed officially, and considered that it did not, except in one area... I think it was: in all areas it was compatible, or there was not a significant risk of incompatibility, but in the area of conscientious objection they believed that there was, as presently drafted, an area, in that if a physician wanted to not take part because of his conscientious objection, there was an obligation potentially on that physician to pass the patient on to somebody who did not think so, and, therefore, the Committee felt that that obligation to take a further step was incompatible with Human Rights and that there should not be the obligation to say, ‘Well, I don’t want to do it,’ and you should be able to say, ‘That’s it, full stop,’ not have to then find somebody else who might. That was their only comment.

The Attorney General: Well, I think that 1 would have the same concerns. Let me put it this way: I would certainly have the greatest regard to the views which have been expressed by the Human Rights Committee in England on that.

The Chairman: My colleagues have indicated they have no further questions so, Mr Attorney, if you have any concluding comments maybe?

The Attorney General: I do not, sir, thank you. It is safe to say that I do appreciate that these are extraordinarily difficult issues. From a lawyer’s point of view, sometimes the most difficult issue is whether prosecutions have to arise in these sets of circumstances and it seems to me that anything that can be done to make that decision easier is for the good of ail.

The Chairman: I apologise for keeping you waiting earlier, and thank you very much for your attendance. I think that concludes the sitting for today for the public hearing. Thank you again, Mr Attorney, ladies and gentlemen, for your attendance.



Appendix 4

House of Keys Select Committee Notice of Invitation for Written Evidence

Government Notice

SELECT COMMITTEE OF THE HOUSE OF KEYS

ON VOLUNTARY EUTHANASIA

On 13th May 2003 the House of Keys gave leave to Mr John Rimington MHK to introduce a Bill to enable a competent adult who is suffering as a result of a terminal or a serious and progressive physical illness to receive medical assistance to die a t his own considered and persistent request, to make a provision for a person suffering from such a condition to receive pain relief medication, and for connected purposes.

Leave to introduce the Bill was qualified by the requirement that, before it should be introduced, a Select Committee of five Members should take written and oral evidence on the subject matter of the proposed Bill and report to the House.

The Members elected to the Select Committee are: Mr Q.. Gill MHK (Chairman), Mr D.M. Anderson MHK, Hon A.F. Downie MHK, Mrs H. Hannan MHK and Hon J. Rimington MHK.

The Committee invites written evidence with regard to the proposed Bill to be submitted to the undersigned no later than 30th September 2003 . In view of the likelihood that many witnesses may seek to give oral evidence to the Committee in addition, it would be helpful If submissions would indicate whether the persons making them wish to give oral evidence and why they wish to do so. The Committee will subsequently decide which witnesses to call for further evidence.

Maiachy Cornwell-Kelly

Secretary to the House of Keys

Legislative Building

Douglas, IM1 3PW

Appendix 5

Public Written SubmissionsReferenceN um ber

Name Organisation Address

1 Mr D Bauer Kirk Michael2 Mr R Field Kirk Michael3 Mrs D Gelder Kirk Michael4 Mr D Gelling Santon5 Mr and Mrs P Lo Bao Castletown6 Mrs C Marshall Onchan7 Mr M Houghton Sheffield, UK8 Mr J Kelly Douglas9 Miss J Rock Douglas10 Ms D Annetts Voluntary

EuthanasiaSociety

London, UK

11 Mr J Pollins Douglas12 Mr F Tilston Douglas13 Mr and Mrs Murcott Douglas14 M and J Hartley Peel

•15 Mr and Mrs Curwen Port St Mary16 Father G Hurst Castletown17 Mrs F Rennie Ballabeg18 Mr A Hewitt Port St Mary19 Mr N Me Farlane Port Erin20 Mr J Payne Douglas

N> Mr R Oake Colby22 Dr G McAll Sheffield, UK23 Mrs I Akter St Johns24 Mrs S Pelling Douglas25 Mr R Fayle IOM

MedicalSociety

Douglas

26 Anonymous Mother'sUnion

27 Mr K Markham Douglas28 Dr K McDowell Douglas29 Mrs C Best Douglas30 Mr and Mrs Fargher Onchan31 Mr D Hayes Baldrine32 Mr and Mrs Karalius Port St Mary33 Mr and Mrs Durkin Derbyhaven34 Anonymous -35 Dr F Baker Onchan36 Anonymous Scotland37 Mr A Jessop Ballaveare38 Dr A Cole The Catholic

Union of Great Britain

London

ReferenceN um ber


39 Mr S Stock Douglas40 Mr G Burrows West Midlands, UK41 Mr J Masson Douglas42 Mrs E Chowdharay-

BestALERT(AgainstLegalisedEuthanasiaResearchandTeaching)

London, UK

43 Ms G Gerhardi44 Ms R Hurst DAA

(Disability Awareness in Action)

London, UK

45 Ms D Whxtefield Glen Vine46 Mr E Tory Maughold47 Dr A Stone Onchan48 Mr A Cain Ramsey49 Mr G Jensen Ballabeg50 Ms T Burrows Kirk Micheál51 Miss M L Habgood Ballaugh52 Dr S Denniston Birmingham, UK53 Ms S Aspis Changing

PerspectivesLondon, UK

54 Mr R Shimmin Douglas55 Mr S Baker Onchan56 Mr R Green UK57 Mrs J Kneale Castletown58 Ms L Cottier Port St Mary59 Mr D Cattle Douglas60 C M Brooks Society of St

Vincent de Paul

Peel

61 Mr and Mrs Anderson Peel62 Mr Phillips Colby63 Mr P Bryden Sulby64 Mr B Harding Douglas65 Mrs L Walraven Glen Vine66 Mrs P Dalrymple Glen Vine67 Ms J Pearn Isle of Man

Religious Society of Friends

Ballaugh

68 Mr and Mrs Preston Castletown69 Mrs S Richardson Peel

ReferenceN um ber


70 Mr F D Newton Douglas71 Mrs M Kneen Port Erin72 Mrs H Quirk Port St Mary73 Mr R G Taylor Douglas74 Ms M Spiers Douglas75 Mrs Walls Castletown76 Mr I J A McDonald Knights of St

ColombiaDouglas

77 Mr and Mrs Watts Ramsey78 Mr and Mrs Tickle Ballasalla79 Ms A DA vies No Less

HumanLondon, ‘UK

80 E ] Moore St Johns81 Mr P Burrows Ramsey82 Mr D Cross Colby83 Rev. G Brefitt Peel84 Mrs S Brefitt Peel85 Mr and Mrs Corkill Douglas86 Ms E Harper Castletown87 Ms R Salt Colby88 Mrs C Edgecox Tromode89 Ven B Partington Representin

g a number of church leaders on the IOM

Douglas

90 Mr and Mrs Lardner Castletown91 Mrs C Harrison Colby92 Dr F Mcall Hants, UK93 Mr J Moore Braddan94 Mrs S J Lalor-Smith Foxdale95 Miss G Konrath Port St Mary96 Mrs A Warner-Fox Onchan97 Miss S Fryer Douglas98 Miss Y Atkinson Onchan99 Anonymous -100 Mrs B Kinley Peel101 Mrs J Maddrell Port St Mary102 Mr R Smith CARE London, UK103 Mr B L Keig Ballasalla104 Ms M Garland IOM

FreethinkersDouglas

105 Mr and Mrs Holden Port Erin106 Mrs } Pearn Ballaugh107 Ms K Smith Ballasalla108 Mr L Hope Wiltshire, UK

ReferenceN um ber


109 P Mundy Ballabeg110 Dr C Cooper Hastings, UK111 Rev. K Jackson Douglas112 Mr J Lalor-Smith Foxdale113 Mrs D Wright Douglas114 Mrs K Prior Colby115 Mrs G Fappiano Castletown116 Prof. A G Johnson Sheffield, UK117 Ms C Milner Colby118 Rev K Corkish Port Erin119 J Kaighin Kirk Micheál120 Prof. T S Maughan Cardiff, UK121 Mrs M Salt Union Mills122 Capt. S Wright Salvation

Army, IOMIOM

123 Mr and Mrs Vandy Ramsey124 Rev. E Malcolm Powys125 Mrs D Kelly Peel126 Mr J Kelly Peel127 Rev. S Caddy Castletown128 Mr D Drower Ballaugh129 Mr R Sharp IOM130 Mr A Lansdown Douglas131 Ms M McGowan Lezayre132 Mrs V Myson Port St Mary133 Dr J Lester Hampshire, UK134 Rev. C J Griffiths Ramsey135 Mrs M King Port Erin136 P R Lewin Douglas137 Mr G Easton | Port Erin138 Rev and Mrs Britton Douglas139 Mr P Richardson Peel140 Mr Paul Richardson Peel141 Mrs S D Dunajewski Colby142 Miss E Stringer Peel143 Mr J Grimson Ramsey144 Ms H De Backer Ballabeg145 Mr and Mrs Byrne Cregneash146 Miss E J Payne Colby147 W Quigley Ramsey148 Mr RTomilson Ramsey149 Dr C Berry Kent, UK150 Ms J Giszter Douglas151 Mr R Jeavons St Johns

ReferenceN um ber


152 Mr D Boultbee Douglas153 Mr and Mrs Relf Croyden, UK154 Dr P J Boultbee Colby155 Mrs E Boultbee Colby156 Dr J Garland IOM157 Mrs I Robinson Douglas158 Mr J Richardson Peel159 D Davis Surby160 P O'Brien Birmingham, UK161 Miss D Duggan Colby162 Ms T Wilson Port Erin163 Rev C Belfield Douglas and

PeelMethodistCircuit

Onchan

164 Easton Family St Marks165 Rev M Else Grace

BaptistChurch

Peel

166 Mr J Stanfield Port St MaryBaptistChurch

Port St Mary

167 Ms I Else Peel168 Mr R D Richardson Peel169 Dr J Paul London, UK170 Mrs F Imrie Port Erin171 Mrs G Blackwell Ramsey172 Ms D Joyce Ramsey173 Mr and Mrs Bowskill Port St Mary174 Miss A Corrin St Johns175 Mrs S Scott Douglas176 Ms S Brookbank Kirk Micheál177 Mr S Else Peel178 Mr and Mrs

UhlenbroekMaughold

179 Ms F Masheter IOM180 LIFE IOM LIFE IOM IOM181 Mrs L Jones Port Erin182 Mr B Jones Port Erin183 Mr B Wallis Port St Mary184 Ms M Christian Douglas185 Miss Miller Peel186 Mrs P Gelling Union Mills187 Ms Arrowsmith Laxey188 Mr I White way Port Erin189 Mr P Hedditch Peel190 Mr A Douglas IOM

ReferenceN um ber


191 Mr R McGowan Lezayre192 Ms S O'Hanlan Foxdale193 Miss P Ness Maughold194 r Dr P Bregazzi Ballaugh195 Mrs S B rear ley Ramsey196 Mrs M Gilbert Ramsey197 Mr and Mrs Maher Port Erin198 Mrs M Fletcher Douglas199 Ms M Ford D ouglas200 Mrs M Redgrave Castletown201 R Graham-Taylor Douglas202 Dr M Buzza Leeds, UK203 Mr and Mrs Quayle Patrick204 Mr G Lacey Derbyhaven205 Mr and Mrs Darnill Port St Mary206 Mrs B Moore Ramsey207 Ms M Molloy Douglas208 Mrs T Arrowsmith Ramsey209 Mr and Mrs Gault Look No

HandsDouglas

210 Miss E Canipa Douglas211 Rev B Humphries Maughold212 Mrs B Humphries Maughold213 Rev M Peacock IOM Synod

of the Methodist Church

IOM

214 Miss B Critchlow Nursing and Midwifery Advisory Council

IOM

215 Mrs P D unworth Ramsey216 Mr and Mrs Emmett Ramsey217 Mr M Kermode Mec Vannin IOM218 “ i Lord McColl London, UK219 Mr P Saunders Christian

MedicalFellowship

London, UK

220 Mr P Farrell Dublin221 Mrs P Kneen Port Erin222 K Smitt Castletown223 C Foster Australia

Appendix 6

Recent Developments in the House of Lords: ADTI Bill 2005

It was agreed at the meeting of the HK Select Committee on Voluntary Euthanasia on the 22nd September 2005 that no further evidence with respect to the Report would be accepted from that date. Subsequently to this, on the 10th October 2005, the House of Lords debated a new Assisted Dying for the Terminally 111 (ADTI) Bill proposed by Lord Joffe. Due to the decision having been made not to accept any further evidence, the contents of the debate and the new Bill are not considered in the body of this report. However, due to the significance of, and the emphasis placed on, the Bills proposed by Lord Joffe in this Report, it was considered that the debate of the 10th October 2005 should be acknowledged.

The primary difference between the ADTI Bill 2004 (as referred to in this report) and the recently published ADTI Bill 2005 is that the ADTI Bill 2005 makes provisions only for a physician to prescribe a qualifying patient with medication, or in the case of a patient for whom it is impossible or inappropriate to ingest that medication, to prescribe and provide means of self-administration of the medication. The 2005 Bill therefore only seeks to legalise physician-assisted suicide, whereas the 2004 Bill sought to legalise both physician-assisted suicide and euthanasia (only in cases where the patient was unable to self-administer medication). The 2005 Bill lacks Clause 7(2) of the 2004 whereby a physician with a conscientious objection must refer the patient to a physician with no such objection. Rather, Clause 7(3) of the 2005 Bill states that no person is under any duty to refer a patient to any other person for assistance to die. The patient is free to consult another physician if either the attending or consulting physician has a conscientious objection. In these conditions the physician with the conscientious objection must, on receipt of a request to do so, transfer the patient's medical records to the new physician. Furthermore, the ADTI Bill 2005 differs from the ADTI Bill 2004 in that it does not make provision for persons suffering from a terminal illness to receive pain relief medication. This is in accordance with the recommendations of the HL Select Committee (HL report paragraph 269 (ix)) and proposals of Lord Joffe.

Appendix 7

Comments from IOM Medical Society SurveyRef.No.

Position of Member

Comments

1 HospitalBased

My objections to this proposal are practical rather than ethical or moral

2 HospitalBased

The Hospice should provide appropriate pain relief of the GP and the hospital sectors have reached the limits of their ability. I do not believe doctors should be asked to assist killing

3 CommunityBased

But it would not be easy to say at what point in the illness euthanasia would (possibly) be appropriate

4 CommunityBased

The Hospice service allows 'death with dignity'

5 CommunityBased

Pressure would lead this to be open to abuse and extension of what is ''terminal and serious progressive and physical illness"

6 CommunityBased

I feel it is much better to leave these issues to the doctor's judgement along with the wishes of the patient. I think we have all prescribed "adequate" analgesia in the past. I don't think changing legislation would help, rather it would overcomplicate things.

7 HospitalBased

The issue here is more when to do it * at what stage in the disease. Also external pressures from relatives, patient feeling a burden to everyone else i.e. wrong reasons.

8 CommunityBased

However I would prefer to align with palliation rather than euthanasia

9 CommunityBased

Strongly feel that medical profession should attempt to provide that best palliative/terminal care, not kill patients

10 CommunityBased

I feel that the arguments for euthanasia have become outdated since the introduction and growth of a superb Hospice movement - especially here in the Isle of Man

11 CommunityBased

I am concerned that some very ill people may feel under some 'obligation' to their relatives and carers to seek euthanasia in a way to ease their responsibilities. I think that there maybe rare cases where this would amount to coercion by uncaring or avaricious relatives.

12 CommunityBased

I would strongly resist any move to force me into assisting anyone to kill themselves. GPs and Hospice services adequately cater for terminally ill patients' needs.

13 CommunityBased

I would prefer to up and leave the Isle of Man and practice elsewhere than to be party to such legislation

14 RetiredPractitioner

Good medical and psychological treatment and proper TLC can deal with pain and suffering. In those cases who attempt suicide, in my experience, all were glad to be still alive when they had been treated.


The will to live is very strong; when it is lost I think the person dies very quickly, and often unexpectedly. I believe that people requesting euthanasia want their pain and suffering removed.

Ref.No.

Position of Member

Comments


When the abortion law was changed it was protected by many safeguards. In practice those have gradually been eroded. The same would happen it euthanasia was legalised.

17 HospitalBased

I would find it morally and ethically wrong to end a person's life by active intervention, and would refuse to the extent of ending up in prison.

18 HospitalBased

We have facilities to ensure death with dignity in the community, hospital and hospice. However, we need more nursing home beds.

19 CommunityBased

Instead of wasting time, effort and resources on this issue, we need to consider greater investment in palliative care. I feel that if good quality palliative care and carer support is provided, it would eliminate the need for euthanasia. Legislation of euthanasia in an admission of failure to provide adequate palliative care. Using the same token, why don't we let all patients with acute illness die - it might help to save money!

20 CommunityBased

At the present time I cannot foresee any circumstances when I would be reconciled to assist in terminating life

21 HospitalBased

I can see the value for some patients. I cannot see how legislation could deal with the subtleties and sensitivities involved.

22 CommunityBased

I would need to have an opt-out clause should the law be changed


During almost 40 years of hospital practice I have never been asked to provide euthanasia


No matter how carefully constructed or worded, any legislation introduced and enacted will be open to abuse. The 1967 Termination of Pregnancy Act was thought to be watertight but has resulted in the most liberal interpretation possible - resulting virtually in termination on demand. That the possible euthanasia legislation should be similarly interpreted would be disastrous.


My husband and I wrote to the Manx Government when the question of voluntary euthanasia was first mooted expressing our strong objection to the proposed legislation for legalisation of euthanasia

26 CommunityBased

This is the thin end of the wedge and all with chronic illness, mental or physical disability would feel under threat

27 CommunityBased

This is outside all ethical and moral beliefs that are central to my practice of medicine. I would not be prepared to take part in euthanasia or physician-assisted suicide in any way whatsoever.

Ref.No.

Position of Member

Comments

28 CommunityBased

This is a social and political issue, not a medical one. Those who seek to medicalise it do so in an attempt to sanitise it.

29 CommunityBased

I feel that the pro-euthanasia lobby prey on the fears of vulnerable people who have a devastating diagnosis and are facing an unknown future. The implication is that they may have a painful and undignified death. The reality that I have witnessed and been part of is that their symptoms can be alleviated, their fears addressed and they can then spend precious quality time at the end of their lives with their loved ones. Their deaths are dignified already.

30 CommunityBased

Euthanasia diminishes the whole community. Legalising it, far from empowering the terminally ill, threatens them and judges their lives 'not worth living'.


After nearly 70 years of total interest, experience and practice of medicine I am certain that I totally agree with the BMA views.


A change in the law would be unnecessary and dangerous


I have never been asked by a patient to assist their suicide. I have been asked several times by relatives to accelerate death of patients whom they considered to be beyond help.


The trouble is that many people have an interest in the demise of old and difficult patients (including the state). In practice legislation of this kind would open the way to large scale elimination of inconvenient human beings - as is happening in Holland and as the abortion act has made possible with the unborn. As one of the sponsors of the Bill said "Many elderly people are unproductive and a burden on the resources of society".

35 HospitalBased

My personal view is that euthanasia should be allowed under strict guidelines

36. RetiredPractitioner

The patient should ultimately determine life/death issues - we serve the patients

37 CommunityBased

Individuals must decide and act for themselves given their own knowledge of their own problem. It is an individual's access to means that is a problem.


After 65 years I have seen so many patients plead to be helped to end the misery. [I] would act by the will of the majority.


Physician-assisted suicide is a matter for the individual physician to decide at the time. Voluntary euthanasia should be made legal. Everyone has the right to die at the time of their own choosing. I am long since retired from active practice. I can only pray if this happened to me, it would have then become legalised.

Ref.No.

Position of Member

Comments


I would support the latter (physician-assisted suicide) after there had been full discussion and counselling and two medical opinions. I strongly believe in the dignity of death.


The BMA have little concept of what happens at the cutting edge of medicine. They have repeatedly in the last 4 decades ignored the wishes and needs of hospital doctors and GPs to a very large extent. Most senior representatives and council members do not practice enough medicine to know the realities of the job. They are too busy attending meetings in London (with expenses) and looking for their knighthoods or even peerages!!

42 CommunityBased

Over 75% people would choose to die in their own home. They have control within their familiar surroundings and family and friends. But over 75% actually die in an institution with strangers around them. Strangers who officiously strive to keep alive. We are trained to use treatments that are available and reluctant to write DNR on notes as although appropriate, often some member of wider staff or family relative is uncomfortable with it.


I am concerned that too hard a line will lead to unwillingness by colleagues to use adequate levels of analgesic drugs for fear of being 'shopped7 by other members of the healthcare team - No deliberate ending of life must not mean uncontrolled prolongation of suffering!

A AT 1 Retired

PractitionerI am concerned by the lack of consent by patients to analgesia and other medication given in terminal care which may shorten life

45 CommunityBased

If it was legal I would not deny patients the choice but would strongly discourage them and educate them on other choices


I think all of us are able to recognise an illness which will result in death fairly shortly

47 CommunityBased

I am sure I have hastened the dying by increasing the dose of narcotics to the point where they produced a state of semi-consciousness. There is a grey area at present where increasing the dose of a narcotic may mean the patient dies earlier than if the dose was not increased. I am sure many health professionals know this but do not regard it as euthanasia but it may be challenged legally at present.

48 CommunityBased

Isle of Man could use a more integrated approach to control of pain. It could be difficult but certain conditions e.g. MND spring to mind as being reasonably clear cut

49 CommunityBased

Should not be only a doctor on the assessment panel

Ref.No.

Position of M em ber

Comments


We delude ourselves as medics if we suggest that, already, we do not get ourselves involved in life/death decisions. I believe our present stance is associated with out views of death which are shaped by individual /religious stances. Let the people decide. Do we believe we are a secular society? If so lets act like one! BMA actually represents á minority [view] of doctors.

51 CommunityBased

Very difficult issue!! Widely different views in society - religious, cultural, moral, ethical. However would my view be different to the above if I, or a close relative/friend, had a a terminal illness with intractable pain? Difficult!

52 HospitalBased

Those who have requested euthanasia have tended to be patients suffering from severe treatable depression

53 CommunityBased

An individual may have acted for themselves. Doctors are open to legal action by relatives or nursing staff who may have appeared to be in agreement at the time and subsequently felt otherwise - blaming others for their own inadequacies.

54 CommunityBased

The big problem is the time it takes to explain and allow an individul to absorb the information given. "It can't be happening to me" is often an initial reaction to bad news. Some people are exceptionally well informed.

55 CommunityBased

DIY. Allow individual access to appropriate medication with sufficient knowledge o f ' the limitations of that medication.


It is lawful to administer treatment with the object of relieving suffering - even if it accelerates death. In my opinion it is salutary that practitioners so acting should still have to be prepared to defend their actions in court.

Appendix 8

Copy of Standard Letter of Receipt

SECRETARY OF THE HOUSE OF KEYS Scrodeyr y Chiare as Feed

COUNSEL TO THE SPEAKER

Legislative Buildings Douglas Isle of Man British Isles IMI 3FW

Fer-Coyrlee da'n Loayreyder

Malachy Cornwell-Kelly

Our Ref: C/VE/tl

26th September 2003

Mr and Mrs Vandy West Aust Lezayre Isle of Man

Dear Mr and Mrs Vandy

Select Committee of the House of Keys on Voluntary Euthanasia

Thank you for your letter of 25th September 2003. This will be placed before the Committee at their next meeting.

Yours sincerely

Malachy Comwell-Kelly

Appendix 9

Copy of Postcard from Manx 4 Death with

Dignity Campaign

“It’s a Human Right”I have recently been diagnosed with prostate cancer with secondaries. Thanks to good medical care I am at the moment in good health and enjoying life.1 would like to think if I reached the stage o f terminal illness where through pain or deteriorating quality o f life, 1 had had enough, I should have the right to say a proper goodbye to family and friends and die in a dignified way.Other terminally ill residents are in the same position and we should be allowed to receive medical assistance to die at a time o f our choosing. Strong safeguards must accompany any change in the law. The House of Keys has voted to set up a committee to investigate legalising doctor assisted dying. Please support the cam paign for a change in the law by signing and returning the petition below. Thank you. Patrick Knccn.

Ififtfe the undersigned bdieve the bwfcrifvs lite/pf tibn■ tbouW;be ehuigod (iutyettto rpftdkal ftndlegri safeguards] to legalise deaor assisted dying for m eirt^ cixrpctant. termihaiy ifi:adiita!v w tsjwe tmdie>e0«it^ 'i«jtiesa to (fie.

□ PlwM'dcfc hare you do not wbh to tf.tfpdt&d «n th* csmpajpiV progroi*

More information visit www.Manx4DWD.org.uk

F ir« Na/rW s:

Address:________ C

Surnam e/s:.

QmiuiaCiiA.!

http://www.Manx4DWD.org.uk

Parliamentary Copyright

available from:

The Tynwald LibraryLegislative BuildingsDOUGLASIsle of Man IMI 3PWBritish IslesTel: 01624 685520Fax: 01624 685522e-mail [email protected] January 2006

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