advance care directives and end of life care planning€¦ · advance care directives and advance...

Advance Care Directives and End of Life Care Planning

Presented by Dr Nicola Cornally

Centre for Gerontology and Rehabilitation/School of Nursing and Midwifery, University College Cork

Ireland

Team/contributions to presentation: Prof. William Molloy, Dr. Ciara McGlade, Dr. Edel Daly.

Today’s Master Class

10.00-10.10 Introductions- group/lecturer/facilitators

10.15-10.45

Advance care directives and advance care planning

Legal status

Purpose

Advantages

Key challenges in advance care planning

10.45-11.15 Introduction to the ‘Let Me Decide’ Programme (Research

& Documents)

11.15-11.30 Completing a ‘Personal Statement’

11.30-11.45 Coffee

11.45-12.30 Case scenarios: completing an advance care directive and

EOLDCP

12.30-12.50 ‘Lived Experience’ of advance care planning – Staff of St.

Luke’s

12.50-1.00 Top tips and wrap up

Learning Outcomes

• Describe the rationale for conducting Advance Care Planning

• Identify the steps involved in completing an Advance Care Directive

• Critically discuss the key challenges in decision making for end of life

• Recognise and complete a ‘viable’ personal statement

• Understand the process of systematically implementing a programme such as ‘Let Me Decide’ in LTC

Advance Care Planning & Advance Care Directives.........

What do they really mean? • Advance Care Planning (ACP)

– Voluntary process – Discussion and review with person with capacity – To help them understand their condition and how it may affect them in the future – To establish a person’s needs, preferences and goals of care – Educate and Consider treatment choices for future care

• Advance Care Directive (ACD) – Output of Advance Care Planning – Statement of wishes (by a person with capacity) about future care, if specific circumstances

arise and the person no longer has capacity to make care decisions (e.g. Dementia) – ACD decisions only apply if the person has lost capacity – Legally binding in some countries

The key differences between ACD/ACP/CP

• Care planning, either end of life or otherwise can include persons with or without capacity (usually completed/led by care team to guide clinical practice based on needs assessment and sometimes preference gained from a patient’s previously completed ACP/ACD)

• Advance care planning must include persons with capacity (the word advance makes the distinction)

• Advance care directive is a formalised outcome of advance care planning (again only completed with a person with capacity)

Capacity

• To understand the information relevant to the decision

• To retain that information

• To use or weigh that information as part of the process of making the decision

• To communicate his or her decision (whether by talking, using sign language or any other means)

Legal Issues

Current Irish Law for competent people

There is NO absolute right to health care

BUT

There IS an absolute right for a competent person to refuse medical treatment, even if it leads to

death.

Law Reform Commission Report (2008) ‘Bioethics: Advance Care Directives’

• “Ideally decisions regarding CPR should be made and discussed in advance as part of overall care planning.”

• “An advance decision regarding CPR should only be made after the appropriate consultation and consideration of all relevant aspects of the patient’s condition ... which includes the patient’s known or ascertainable wishes.”

• “For those who have taken the trouble to plan what should happen to them in the future (which the Commission would, of course, encourage) it is possible that the person may decide to deal with a range of issues, including their property and health care, in a single document.”

Are ACDs enforceable in Ireland?

• “If created by a competent informed person an ACD would be upheld as valid”

(Madden D. Medicine Ethics & Law, 2002)

• “Advance statement, properly made and containing no directives that were themselves unlawful, would be acceptable to Irish Law” (Mills, S. Clinical Practice & the Law, 2007)

What if…..

What if you had no ACD and you’d lost capacity to decide for yourself e.g. advanced dementia…..

Who would decide for you?

Historical Cases

• There may be disagreement on what is best for the patient from family and healthcare professional’s perspectives especially when the patients wishes are not known

(Karen Ann Quinlan, Terri Schiavo, Nancy Cruzan)

Karen Ann Quinlan Irreversible brain damage

PVS

Family and Hospital wanted ventilation D/C

Morris County prosecutors threatened homicide charges (based on the right to life)

New Jersey supreme court judge denied request

Appealed to the Supreme court and request granted

Lived for a further decade in PVS with artificial feeding

Historical Cases

• Nancy Cruzan Case went to the United States Supreme Court ruling on her right to die in

1990 after a battle between her parents and the Missouri Department of Health

Congress passed the self-determination act in the states in 1991

Month after the ruling: the right to die society received more than 300,000 requests for ACD forms.

• Terri Schiavo Husband campaigned for right to die and removal of artificial feeding –

opposed by parents and federal government

14 appeals – supreme court ruling

Treatment preferences

• These issues are common among the five countries included in this study (Hong Kong, Ireland, Israel, Italy and the USA).

• However, EOL treatment preferences and the use of life-sustaining treatments are also influenced by culture and traditions within each of these countries.

• Little was known about preferences among nurses in different traditions and cultures about EOL treatment.

• A descriptive, comparative design

• A questionnaire developed by Molloy et al (1991) was distributed to a convenience sample of 1089 nurses in the five countries (Ire n=186, Italy n =261, US n=344, Israel n=141, Hong Kong n=157).

• The questionnaire contained three case vignettes describing a patient scenario; each vignette indicated a different level of information regarding the patient’s wishes.

• The three case vignettes where the clinical circumstances were identical: Mr Murphy a patient with Alzheimer’s disease, Mr Murphy as the participant’s father, and Mr Murphy as the participant.

PATIENT CASE SCENARIO: MR MURPHY

– 84yrs old

– Living in a nursing home

– Has Alzheimer’s Disease for 7yrs

– Unable to recognise children, sometimes recognises wife

– Needs assistance with mobilising

– Incontinent

Mr Murphy is having episodes of hematemesis and is hypotensive. Unless treated he will most likely die. His family are not available and there is no advance directive. What would you do?

Choices

Palliative

•leave him in the nursing home and keep him comfortable

•Only measures that enhance comfort or minimize pain; e.g. morphine

•No X-Rays, blood tests or antibiotics, unless they are given to improve comfort

•Do not transfer to hospital unless absolutely necessary

Limited

•Transfer to hospital for transfusion but no surgery or endoscopy

•IV therapy may be appropriate

•X-Ray examination and blood tests may be appropriate

•No invasive procedures; do not transfer to ICU

Surgical

•Blood transfusion, endoscopy and surgery if necessary

•Do not admit to ICU

•Do not ventilate (except during and after surgery)

Intensive

•Blood transfusions, endoscopy, surgery, intensive care, ventilator and everything a modern hospital has to offer to maintain life if necessary.

Palliative / Limited Care Option

40 39 66

40

72

84 71

77

87

57

68

82

53

62

69

0

50

100

150

200

250

300

350

400

450

Patient Parent Self

CASE

HONGKONG

ITALY

IRELAND

USA

ISRAEL

%

Yes, I would perform CPR

0

10

20

30

40

50

60

70

80

90

PatientParent

Self

85

32

16

65

41

22

70

54

32

61

45

24

55

35

20

USA

IRELAND

ISRAEL

ITALY

HONGKONG

Yes, I would provide artificial feeding

0

10

20

30

40

50

60

70

80

PatientParent

Self

74

40

19

65

50

26

79 75

59

66

48

25

77

65

34

USA

IRELAND

ISRAEL

ITALY

HONGKONG

CPR and Tube feeding for case scenario given

0

10

20

30

40

50

60

70

80

90

100

Doctor Nurse AHP Student

Pe

rce

nta

ge

CPR

Tube feeding

CPR and Tube feeding for themselves

0

10

20

30

40

50

60

70

80

90

100

Doctor Nurse AHP Student

Pe

rce

nta

ge

CPR

Tube feeding

KEY POINTS • Interesting differences in preferences among nurses

when presented with the case of Mr Murphy as patient, parent and self.

• Irish nurses opted for ‘palliative care’ more often than their counterparts in other countries.

• The ‘Intensive’ treatment option was most popular choice for nurses in the USA and Israel

• Major influences on participant choices were Lack of knowledge of patient wishes Duty of care. • Fear of legal action was not a major influencing

factor, contrary to public perception.

The Problems with ACDs

• How can you be sure the person understood their decisions?

• How can you be sure the person wasn’t coerced?

• How can you be sure the person was competent when making the ACD?

• What if the choices made are “inappropriate”?

The Problems with ACDs

• If vague, how do you interpret them

– “heroic measures”, “reasonable recovery”....

• Projecting oneself into the future is tricky

• What if you change your mind?

• Some feel ACDs send the message to elderly people that they should refuse treatment

• “Slippery Slope to Euthanasia”

What ACDs ARE NOT

• A means to limit care

• A means to get patient to forego treatment

• An alternative to appropriate/reasonable treatment

• The means for addressing issues of futility or the perceived high costs of end-of-life care

When should I do Advance Care Planning?

• As the patient is coming through the door?

– Most older people prefer if they’ve gotten to know the person first

– Advertise it early

– Allow time for person to “settle in”

• When the person still has capacity

The Process

Information giving is a critical element of the ACP process

Communication is very important

Building trusting relationships with the health care team

“I actually changed dialysis days because of a doctor who did rounds refused to talk with me about end-of-life issues. When I tried to ask him questions,

he would not take me seriously and he was sort of like, oh there you silly girl, you don’t have to think about that yet. And I found that quite distressing. It

was as if he could not bring himself to talk about those issues.”

The Process

• Discuss the issues relevant to the decisions

• Their views on their life as it is

• Their views on what is important to them

• Their views on treatment in their current health, as they are and what would change those views

• Assess their understanding of their current health, diagnosis, prognosis (on their terms) e.g. do they understand their COPD

Documentation

• Document the discussion, views expressed etc.

• If ACD completed: – signed (by whom?),

– witnessed (by whom?),

– filed (where?)

• Want to be able to know at a glance if there’s an ACP

• Want to be able to access it easily and quickly

• Want to be able to show it’s made in a valid way…

Core steps

• Provide information

• Establish desire to complete ACD

• Educate

• Establish decision making capacity

• Document, sign, date

• Store

• Review

‘Let Me Decide’

Pilot Study-Ireland

• Prof Willie Molloy • Dr. Ciara McGlade • Dr. Edel Daly • Dr. Nicola Cornally

Funded by the Irish Hospice Foundation/Atlantic Philanthropies

‘Let Me Decide’ Programme

The systematic implementation of both an

Advance Care Planning using the

‘Let Me Decide’ Advance Care Directive

and

a General Palliative Care Educational Programme

In long-term care institutions in Ireland

Aim: To evaluate the systematic implementation of the LMD-ACP programme in three long-term care sites Design: Two year before/after pilot study. Mixed method evaluation (Qualitative and Quantitative measures) Sample: Three Nursing Homes in Ireland (n residents=290) Intervention: Let Me Decide advance care planning and palliative care education programme Outcomes: Staff knowledge, learning needs, barriers to ACP, up take of ACP/ACD among residents, compliance with ACD/ACP, acute hospital utilisation and quality of death and dying (from family and staff perspective), impact on care environment

Why palliative care component?

• Evidence that ACD increase the demand for palliative care

• Evidence of unmet palliative care needs of residents in long-term care

• Evidence of unmet palliative care educational needs of staff in long-term care

Baseline Data on Nursing Homes

• Profile of home questionnaire

• Baseline residents’ demographics

• Staff Palliative Care educational needs

• Attitudes and Barriers to implementation of Advance Care Planning

• Chart review of all deaths in the previous year

• Quality of Dying and Death (QODD) survey - to assess the death from the perspective of the relative of deceased resident

Let Me Decide - ACD training

• Introduction to Advance Care Directives

• Legal Issues

• Ethical Issues

• Practical Issues

• Measuring Capacity

• Completing an ACD

Let Me Decide – Palliative Care Education

• General palliative care education

• Aimed at LTC staff

– First 3 sessions for nurses & Healthcare assistants

– Last 3 sessions for nurses

• Five core topics

– Informed by Staff Learning Needs Questionnaire

(to build on knowledge & experience of staff)

– Informed also by the Palliative Care Competency Framework

Let Me Decide-Irishified

–Different legislation here in relation to both ACDs and medical decision-making for people lacking capacity

– Irish edition of ‘Let Me Decide’ book (2011)

– LMD form altered for Irish LTC population

–Additional form developed for care planning for residents lacking capacity

–Policy development for institutions

Let Me Decide Advance Care Directive 1. Summary of Patient Treatment Choices

IF I had an Unacceptable/Irreversible condition of health/ functioning and if I became seriously ill I would choose:

Life-Threatening Illness

Cardiac Arrest

Feeding

Palliative Care Limited Care Surgical Care

Intensive Care

No CPR

CPR

Basic

Tube

Let Me Decide Advance Care Directive

2. Personal Statement

I would consider an UNACCEPTABLE condition to be any condition WHERE:_______________

______________________________________

______________________________________

______________________________________

I would agree to the following:

Donating my organs Cremation:

after my death: Yes☐ No☐ Yes☐ No☐

Advance Care Planning and Advance Care Directive Up-Take

• Following implementation, over 50% of residents had some form of end-of-life care plan in place (advance care directives; advance care plans; or end-of-life care plans for those with diminished capacity).

Nursing Home ACDs/EOL Care Plans completed (%)

1. 120 Beds N = 68/120 (57%)

2. 97 Beds N = 58/97 (60%)

3. 79 Beds N = 39/79 (50%)

Compliance with Wishes

• Despite the high prevalence of cognitive impairment, at least 10% of residents had capacity to complete their own advance care directive.

• Of 70 residents who died during the study period, 84% had an end-of-life care plan in place (12% of these were advance care directives).

• Compliance rates: Of those who died, wishes were fully adhered to in 95% of cases.

Health Care Utilisation

Data from largest university teaching hospital in Ireland, only Level 1 Trauma centre in the country showed; Increase of 10.34% NH transfers and 5.76% NH in-patient bed days for the same period

42% reduction of acute hospital bed days from Nursing Home residents observed

Staff survey

Before (n=87) • 50% had no palliative training • 40% would feel confident about

discussing end of life issues with residents and family

• Palliative care learning need as indicated by over 90%:

Pharmacological Management of Pain and opioids & Understanding the emotional needs of the dying patient • Barriers to ACP were lack of

knowledge among general population and staff and lack of sufficient time to educate resident/family

After (n=93)

• 82% found our palliative training ‘very useful’

• 90% believed that every competent person should become more involved in their decision making

• Pain management remains a ‘very important’ learning need for over 70%

• 65% felt confident educating and completed ACP/ACDs with residents and family

Qualitative Evaluation of the programme

• Focus groups were conducted with 15 nurse managers/DONs and staff that were involved in implementing the programme.

• Length of focus groups varied between 51mins-72mins

• Participants asked to describe ‘Let Me Decide’ in one word

‘we are just negligent to look after people without finding out what their wishes are and I think

we have no right to look after people without asking them- give them the opportunity’.

Demonstrating the significance of implementing ACP/ACDs

“It requires engagement on a deeper level particularly

with family members and it means getting involved in

discussions that heretofore may have been avoided or deferred so as not to upset

people.”

LMD enhanced communication and normalised death – one resident even

thanked staff for giving them the dignity to decide.

“I think it has made end of life care in general smarter since we started it. I think we have examined critically our end of life

care”

These observation by staff have been confirmed by quantitative data

“I have received very positive feedback from relatives after their

loved one has passed away and some of the feedback directly

relates to the level of preparedness of the family and next of kin as a

result of LMD. Being prepared and understanding what to expect at this

difficult time has helped family members deal with the loss of their

loved one.”

Benefits of the programme have extended to reducing family distress and creating a sense of preparedness at end of life

“we have had a reduction in the number of transfers to acute hospital at the end of

life, the staff are happier that they are not seeing dying

residents transferred out of their home to a busy A/E

Department. There has been an increase in staff morale”

LMD has enhanced practice

Key Challenges

Challenges

Establishing capacity Persons lacking

capacity

Capacity assessment

Borderline capacity

Enactment of ACP Ensuring compliance

GP involvement

Legal aspects

Indecision Gaining consensus

Misperceptions of

purpose

Not for everybody

Challenges to Implementation

Releasing staff for training

Reluctance of staff to take ownership of ACP role

Lack of adequate time to deliver ACP Difficulties educating residents

with cognitive impairment

Failure of other healthcare professionals to recognise completed

ACP forms



Lack of adequate time to deliver ACP Difficulties educating residents with

cognitive impairment

Failure of other healthcare professionals to recognise completed ACP forms

Considerable challenge for management

Practical and financial

implications

Prompted the ongoing development of e-learning modules

Blended learning format to deliver training and

assess competence




Lack of adequate time to deliver ACP

Difficulties educating residents with cognitive impairment


ACP is part of the management role

Lack of confidence and experience in delivering ACP

Fear of misperception of purpose by residents

“I approached a resident one day about it and he said to me no I don’t want to have anything to do with that now at all he said

because I know well what is going on here. They just don’t

want the likes of me turning up in hospital he said”

”Live ACP demonstrations” were delivered in front of small groups

of nursing staff

Survey of staff attitudes revealed diverse training needs and

diverse levels of confidence among staff

The palliative care education was further developed based on the

staff survey results

Standardisation of training and accreditation to promote

confidence




Lack of adequate time to deliver ACP Difficulties educating residents

with cognitive impairment


Lengthy discussions of a sensitive nature

Can be a very slow process for residents lacking capacity

“And then you would have family members that don’t talk and one

member wants this and other members want that so you have to bring them all together in a circle

where the patient isn’t compos mentis…and you have to make sure that the whole lot of them are on the same wavelength, otherwise

you could forget about it”

Need for protected time for staff to engage residents and families in the

ACP process in an unrushed manner

Appointment of ACP facilitator, preferably a staff member with

specialist skills and training

Acceptance that ACP is not for everyone

“I think that once staff began to see the benefits of their hard work delivering ACP to residents and

families, they felt that it was worth putting in the effort, even in the

face of time constraints”


“You need quite a few meetings actually, you have to introduce it,

introduce the literature and then try and get the relatives and give them

the literature and explain it all to them and then go back and well of course you have to do the SMMSE

first you know so it starts there really. I suppose it does need that amount of consideration as it is a

very big decision”.






-Limited ability to concentrate during ACP

education process

-Borderline capacity

”I think there should be a patient’s page for those lacking full capacity to

complete an ACD, but who are clear on some wishes”

-Delivering educational material in ‘bite-sized

chunks’

-Larger print on educational aids

-Summarised versions of key material

-Modifications to the SIACAD assessment






Failure of other healthcare professionals to recognise

completed ACP forms

Out of hours doctors, ambulance staff, and

hospital ED staff

“That has happened to one of my residents as well

that I sent up with an Advance Care Directive

and it was ignored”

Hospitalisation of residents despite wishes to

be kept in the LTC facility

ED staff requesting completion of hospital

order form

Such barriers will not be overcome until ACDs are more normalised in our

society and are protected by supporting legislation

e.g. Assisted Decision-Making Bill

Education for all

healthcare professionals and particularly those in

the emergency services is needed


The Personal Statement

Personal Statement

• Describes what you would consider intolerable.

• In this irreversible and intolerable condition you would not want life prolonging treatment

4 D’s: Simple Principles

• Don’t name diseases

• Don’t confuse ‘And’ and ‘OR’

• Don’t use time limits

• Describe everyday functions

Don’t Name Diseases

• When you describe this intolerable condition don’t say……

If I had Cancer

OR

If I had Alzheimer's Disease

Don’t Confuse ‘And’ & ‘OR’

Use with caution

Example:

‘I would consider my condition intolerable if I can’t wash and feed and dress myself’

OR

‘If I can’t wash or dress or feed myself’

Don’t Use Time Limits

• ‘If I am terminally ill or have less than six months to live’

Describe every day functions

• ‘If the time ever comes and I am unable to dress myself, or recognise family and friends and if I am so confused that I lose control over my bladder and bowel and there is no hope of recovery, then I would consider that to be an intolerable condition’

Now consider level of care you would want in this condition and what you would not want to prolong your life

Examples:

Good • I would consider a condition unacceptable

if I am permanently confined to bed and have to spend most of my time in hospital and had no hope of recovery. I would consider a condition unacceptable if I am unable to wash and dress myself, and unable to speak, or quadriplegic. I would not consider paraplegia ‘unacceptable’. Do everything to avoid hospitalization. I would want to die at home (or Nursing Home) if at all possible. I would accept temporary restraints for my safety.

Bad • I would consider a stroke an intolerable

condition. Only use life prolonging treatment if there is a reasonable chance of recovery. I would consider it unacceptable if I could not wash or feed myself. I would never accept restraint. I never want to be placed in a Nursing Home. If I have less than 12 months to live Do Not Attempt to resuscitate me.

Key points

• Clear

• Easily Interpretable

• Informed

Case Studies

Things to consider in decision making process

• Valid ACD

• ‘Best interest’ –likely outcomes, risks of treatment vs. non-treatment, patients rights

• Consider alternative course

• Consider medical factors (prognosis, outcomes)

• Consider life factors (wishes, family, spiritual, cultural)

• Ethical concepts

• Possible consequences

Top Tips for Systematically Implementing Advance Care Planning in Long Term Care

Facilities

Recommendations before implementation….

Comprehensive ACP staff education package

Comprehensive policy on ACP tailored to LTC site

Structured ACP process for staff to follow

Clarify who is responsible for each aspect of ACP process

Specialist training for staff members to facilitate ACP

Protected time for engagement in ACP

During implementation….

Appropriate educational material for residents and families

Education of GPs

Open communication between nursing staff, residents, families and doctors

ACPs should be accessible and all staff aware of the existence and content of forms

Provide information to out-of-hours doctors, paramedics, local ED departments

During implementation….

Communication and collaboration between LTC staff, GPs (including out-of-hours doctors), ambulance services and specialist palliative care doctors

Ensure ACP forms are easily interpretable by different groups of HCPs

Design systems for seamless transfer of ACP information between different healthcare settings

Implement quality assurance systems in the nursing home

Resources

http://www.endoflifecareforadults.nhs.uk/publications/pubacpguide

National Programme

• http://learningplatform.thepalliativehub.com/enrol/index.php?id=14

http://learningplatform.thepalliativehub.com/enrol/index.php?id=14



Resources

• http://www.goldstandardsframework.org.uk/Resources/Gold%20Standards%20Framework/Test%20Content/TipOnUsingTheAdvanceCarePlanv1.pdf

• https://www.committedgiving.uk.net/ncpc/publications/Product.aspx?id=358

http://www.goldstandardsframework.org.uk/Resources/Gold Standards Framework/Test Content/TipOnUsingTheAdvanceCarePlanv1.pdf







Recap on Learning Outcomes

• Describe the rationale for conducting Advance Care Planning

• Identify the steps involved in completing an Advance Care Directive

• Critically discuss the key challenges in decision making for end of life

• Recognise and complete a ‘viable’ personal statement

• Understand the process of systematically implementing a programme such as ‘Let Me Decide’ in LTC