HSE National Conference

Assisted Decision-Making: Challenges and Opportunities for Health and

Social Care Professionals

Assisted Decision-Making (Capacity) Act 2015

Patricia T Rickard-Clarke 22 February 2016

Council of Europe Recommendation 99(4) on Principles concerning the Legal Protection of Incapable Adults 1999

Respect for Human Rights

The fundamental principle underlying all the other principles, is respect for the dignity of each person as a human being. The laws, procedures and practices relating to the protection of incapable adults shall be based on respect for their human rights and fundamental freedoms

General Rights and Principles informing ADM(C) Act 2015

All persons have equal legal rights (legal capacity)

A person’s rights to his or her dignity, bodily integrity, privacy, autonomy and control over financial affairs and property must be respected

Principle of autonomy and self-determination must be

respected – effect must be given to will and preferences, beliefs and values in so far as reasonably ascertainable

Any necessary intervention must minimise restriction on a person’s rights and restriction on freedom of action

All persons have the right to consent to and to refuse

medical treatment

Overview Existing structures

General Overview of what is included and what is not included

Assisted Decision-Making (Capacity) Act 2015

Capacity and how it is to be assessed

Overarching Guiding Principles to apply

Mechanisms to assist and support decision-making

Courts Jurisdiction

Decision Support Services

Impact of legislation

Existing Structures

Definition of Capacity – not defined in legislation

National policies not uniformly followed in practice

Presumption of Capacity – at common law

Ignored in practice

Next of kin

No general authority

No emphasis on person’s individual rights and wishes

Right to privacy and confidentiality

Ignored in practice

Data Protection used as a shield when it suits

Advance Healthcare directives

Legally valid and recognised by courts

But no statutory provision/legal uncertainty

Existing Structures

Enduring Power of Attorney under 1996 Act

No proper reporting requirements

No accountability when registered

High Court application necessary to address issues

No provision for healthcare decisions

Wards of Court

Lunacy Regulations (Ireland) Act 1871

Status approach to capacity continues to be used – conflicts with common law precedents and National Policies

Discriminates on grounds of a disability

Mainly concerned with property matters

No participation by person subject of application

No review

Existing Structures – still to be addressed

Right to private property

Issue of financial abuse not addressed

Cultural ‘right to inheritance’

Deprivation of Liberty/Restraint

Decision with regard to place of residence not considered

Come within provisions of ECHR but no clear legal procedural rules

Chemical Restraint

Breach of ECHR – Art 3 inhuman and degrading treatment

NHSS (Fair Deal)

Limitations need to be addressed

Interface with ADM(C)Act 2015 necessary

Who is the ADM(C)legislation for? Relevant person

A person whose decision-making capacity is in question or may shortly be in question in respect of one or more than one matter

A person who lacks capacity in respect of one or more than one matter

A person whose capacity is in question or may shortly be in question in respect of one or more than one matter and who lacks capacity in respect of one or more than one matter at the same time but in respect of different matters

Decision-making capacity = Not mental capacity

Cognitive ability/capacity = Medical assessment of mental state

(Obligation to ensure that this is fully understood in practice. Direct communication with relevant person is necessary in order to fully comply with legislation)

Assessment of Capacity A person’s decision-making capacity is to be construed

functionally (FK case)

Capacity - a person’s capacity shall be assessed on the basis of his or her ability to understand, at the time that a decision has to be made, the nature and consequences of the decision to be made by him or her in the context of available choices at that time

(time specific + issue specific) (No blank canvass KK case EWCOP [2012] – onus on assessors)

(..[the] courts must guard against imposing too high a test of capacity to decide issues such as residence because to do so would run the risk of discriminating against persons suffering from a mental disability – PH case EWCOP [2011])

Lack of Capacity A person lacks of capacity to make a decision if he or she is

unable to –

Understand the information relevant to decision

retain that information long enough to make a voluntary choice (WCC v Sykes [2014] EWCOP)

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

(Not necessary for a person to demonstrate a capacity to understand and weigh up every detail of the respective options, but merely the salient factors KK case 2012)

to communicate decision by any means (including sign language/assistive technology) or if the implementation of the decision requires the act of a third party

Functional Approach The fact that a person lacks capacity in respect of a decision

on a particular matter at a particular time does not prevent him/her from being regarded as having capacity to make decisions on the same matter at another time (Make sure correct environmental factors are suitable for the person – onus on assessor)

The fact that a person lacks capacity of a decision on a particular matter does not prevent him/her from being regarded as having capacity to make decisions on other matters (Issue specific)

When there are doubts about capacity, assessment should be done at highest level of functioning and only if it is necessary

Information relevant to decision A person is not be regarded as unable to understand information

relevant to a decision if he or she is able to understand an explanation of it given in a way that is appropriate to his or her circumstances (using clear language, visual aids or other means)

(Support: He told me that he was at risk of forgetting and thus needed a carer who could assist him – WCCG v IA 2014)

Information relevant to decision includes information about the reasonably foreseeable consequences

of each of the available choices at the time the decision is made

or failing to make the decision (Consequences may be different for different people)

The fact that a person is able to retain information for a short period only does not prevent him/her from being regarded as having capacity to make the decision

Guiding Principles (ADM(C) Act) Principles shall apply for the purposes of an intervention (before

and during any intervention in respect of a relevant person) and the intervener shall give effect to the principles:

Presumption of capacity unless the contrary is shown – (starting point for everyone)

Relevant person shall not be considered as unable to make a decision unless all practicable steps have been taken, without success, to help him or her to do so. (What information is required, how is it to be presented/communicated – assessor)

Making, having made or likely to make an unwise decision is not indicative of being unable to make a decision (KK + Sykes cases)

There shall be no intervention unless it is necessary to do so having regard to the individual circumstances of relevant person (Is an assessment necessary- think ahead about least intrusive manner)

Guiding Principles (For Intervention) An Intervention

Shall be in a manner that minimises

the restriction of relevant person’s rights, and

the restriction of relevant person’s freedom of action

Have due regard to the need to respect the right of the relevant person to dignity, bodily integrity, privacy, autonomy and control over his/her financial affairs and property

Be proportionate to the significance and urgency of the matter the subject of the intervention and

Be as limited in duration in so far as practicable after taking into account the particular circumstances of the matter the subject of the intervention

Where a person lacks capacity - the likelihood of recovery of relevant person’s capacity in respect of the matter at issue

Guiding Principles (For Intervener)

Permit, encourage and facilitate the relevant person to participate or to improve his or her ability to participate, as fully as possible in the intervention. (Appropriate Communication skills essential)

Give effect, in so far as practicable, to the past and present will and preferences, in so far as are reasonably ascertainable (Avail of Opportunities to find out)

Take into account

the beliefs and values of the relevant person

Take into account any other factors which the person would be likely to consider if able to do so

Unless inappropriate/impracticable to do so, consider the views of

Any person named by the relevant person to be consulted

Any nominated decision-making

Guiding Principles (continued)

Act at all times in good faith and for the benefit of the relevant person (May have to make this judgment call if nothing else. Note not best interest principle)

Consider all other circumstances of which he or she is aware and which it would be reasonable to regard as relevant

The intervener, in making an intervention may consider views of:

Any person engaged in caring for the relevant person

Any person who has a bona fide interest in the welfare of the relevant person, (relative, advocate, case worker) or

Healthcare professional

Decision-Supporters/Interveners

Must be 18 years of age

Interveners: Stages for appointment

When a person has capacity may appoint:

Attorney under an Enduring Power of Attorney

Designated Healthcare Representative in a AHD (or make an AHD with no appointed representative)

Think Ahead/Plan Ahead

Enduring Power of Attorney

Advance Healthcare Directive

Interveners: Stages for appointment When a person considers his/her capacity to be in question or

may shortly be in question may appoint a:

Decision-Making Assistant (to assist with decision/s)

Co-Decision-Maker (to jointly make decision/s)

When a person lacks capacity – application is made to the court and if the court makes a declaration that person lacks capacity, court will make an order (have regard to any AHD/EPA)

Make the decision on behalf of the person

Appoints a decision-making representative to make specified decisions on behalf of person

Can be at different stages at same time for different decisions

Attorneys - Enduring Power of Attorney

Council of Europe Recommendations

Member States should promote self-determination for capable adults by introducing legislation on continuing powers of attorney and advance directives …with a view to implementing the principle of self-determination CM/REC (2009)11

Attorneys appointed under 2015 Act Functional assessment of capacity

Guiding Principles apply – participation by donor even if EPA has come into effect

Personal welfare decisions include healthcare decisions

Court – Circuit Court

Attorney - ‘suitable person’

Detailed ‘ineligible’ list and disqualifications

Execution: Statements by

Donor, lawyer, doctor, healthcare professional + attorney

Does not enter into force until:

The donor lacks capacity in relation to relevant decision/s

Instrument creating EPA has been registered

Scope of Authority in EPA

Donor can confer either or both of:

General authority to act on the donor’s behalf in relation to all or a specified part of the donor’s property and affairs,

or

Authority to do specified things on the donor’s behalf in relation to the donor’s personal welfare (includes healthcare) or property and affairs, or both

which may, in either case, be conferred subject to conditions and restrictions

Scope of Decisions in EPA

A donor shall not, in an EPA, include a relevant decision –

Relating to the refusal of life-sustaining treatment or

Which is the subject of an advanced healthcare directive

To the extent that an EPA includes a relevant decision relating to these issues the power shall be null and void

Registration of an EPA

Application for registration to Director DSS

Notice must be given to specified parties

On receipt of application Director shall carry out reasonable enquiries in order to establish criteria met which includes being satisfied that the attorney is a suitable person and that the application is in accordance with the statutory provisions

Details of any existing agreement/advance healthcare directives

Register for EPAs Director of DSS shall establish and maintain a Register

Shall make Register available for inspection

May issue an authenticated copy of EPA or part thereof

Shall keep a record of those who inspected Register or who obtained a copy of EPA

Reports by Attorney

Attorney for property and affairs shall within 3 months of registration submit to DirDSS a schedule of assets and liabilities

Shall keep proper accounts and financial records in respect of donor’s income and expenditure and shall

Submit such accounts and records as part of annual report to Director

Make available for inspection by the Director or by a special visitor, as may be reasonable, such accounts and records

Make annual reports on the performance of his/her functions

Attorneys appointed under 1996 Act

Attorneys appointed under the Powers of Attorney Act 1996 for both registered EPA (has come into effect) and for unregistered EPA (has not yet come into effect) the 1996 Rules will apply

Except that provisions under the 2015 Act will apply to 1996 attorneys in relation to:

Complaints may be made against attorneys

Director of Decision Support Service may carry out an investigation

Matter may be referred to the court

Attorney may no longer act

EPA may be revoked

Advance Healthcare Directives

Decision-Making Assistance

Decision-Making Assistant A person who consider his/her capacity to be in question or may

shortly to be in question may appoint another person/s to assist the appointer in making one or more than one decision

The appointment of an assistant decision-maker shall be made in an Decision-making assistance agreement

Can appoint more than one person in an assistant decision-making agreement and may specify that the decision-making assistants shall act

Jointly

Jointly and severally or

Jointly in respect of some matters and jointly and severally in respect of other matters

Agreement may be revoked by either appointer or assistant at any time and may be varied by the appointer at any time

No reporting requirements

Functions of Decision-Making Assistant Assist the appointer to obtain appointer’s relevant

information (required in relation to a relevant decision)

Advise the appointer by explaining relevant information and considerations relating to a relevant decision

Ascertain the will and preference of the appointer on a matter the subject or to be the subject of a relevant decision and assist the appointer to communicate them

Assist the appointer to make and express a relevant decision

Endeavour to ensure that the appointer’s relevant decisions are implemented

Decision-making assistance agreement

Regulations will prescribe:

Form of agreement

Procedures and requirements relating to execution, variation + revocation

Information to be included (adequate information as to the effect of DMAA)

Statements as of understanding (by appointer + decision-making assistant)

Specifying what decisions

Providing for attestation of signatures (witnesses)

Notices that must be given (to include Director DSS)

Co-Decision-Making

Co-Decision-Making

A person who consider his/her capacity to be in question or may shortly to be in question may appoint a suitable person/s in writing in a co-decision agreement to jointly make one or more than one decision on the appointer’s personal welfare or property and affairs or both

A person is suitable for appointment as a co-decision-maker if he or she –

Is a relative or friend of the appointer who has had personal contact with the appointer over such period of time that a relationship of trust exists between them and

Is able to perform functions under the co-decision-making agreement

Co-Decision-Maker An appointer may appoint more than one person in a co-

decision-making agreement but may not

Appoint in the same co-decision-making agreement more than one person as a co-decision-maker or

Appoint in a co-decision-making agreement a co-decision-maker in respect of a relevant decision which is the subject of another co-decision-making agreement

Co-Decision-Making Agreement must be signed by appointer and co-decision-maker and witnessed by 2 witnesses of whom at least one is not an immediate family member

Functions of a Co-Decision-Maker Advise - by explaining relevant information and considerations

relating to a relevant decision

Ascertain the will + preference of the appointer on a matter the subject of or to be the subject of a relevant decision + assist the appointer with communicating the appointer’s will and preference

Assist the appointer to obtain appointer’s relevant information

Discuss the known alternatives and likely outcomes

Make a relevant decision jointly with appointer

Make reasonable efforts to ensure that a relevant decision is implemented as far as practicable

Shall be entitled to be reimbursed out of the assets of the appointer in respect of fair + reasonable costs and expenses but not entitled to remuneration

Co-Decision-Maker- obligations

Obligation to inform Director if capacity deteriorates/improves

Shall acquiesce with wishes of appointer and shall not refuse to sign document unless reasonably foreseeable that such acquiescence or signature will result in serious harm….

Shall not have authority to make decisions jointly with relevant person other than the relevant decisions in Co-DM agreement

Where more than one Co-DM, each shall exercise functions in a manner which is not inconsistent with functions of another Co-DM

Registration of a Co-DM Agreement Shall not enter into force until registered

Application must be made within 5 weeks from date agreement signed (Objections to registration – within 5 weeks of notice)

Notice must be given to ……

Application

Statement by appointer….understands implications….

Statement by co-decision-maker…..guiding principles….reporting obligation

Statement as to why less intrusive measure of decision-making assistance agreement was not chosen

Details of any other agreements/epa/ahd…..

Statement by doctor/healthcare professional……

Character reference of co-decision-maker

Copies of notices and Fee

Registration of CDMA Director DSS will review application + any objections received

Carry out enquiries

Where satisfied register CDMA and notify applicants date registered

Where not satisfied notify applicants, provide reasons and give time to respond – if failure – court application

Effect of registration

Cannot be challenged on grounds that appointer did not have capacity to make decision

A relevant decision made otherwise than jointly is void

Objections to Registration Within 5 weeks of notice may object/grounds – fraud/undue influence

Annual Review of Co-Decision-Making Agreements- capacity

Annual Report by CDM to DDSS on performance of functions

Register for Co-DM Agreements Director of DSS shall establish and maintain a Register

Shall make Register available for inspection

May issue an authenticated copy of C0-DM Agreement

Shall keep a record of those who inspected Register or who obtained a copy of Agreement

Director shall review – 3 months - first anniversary and thereafter at intervals not exceeding 3 years

Statements required from medical practitioner/healthcare professional

Director may make an application to the court

Reports by Co-Decision-Maker annually

Variation (if registered)

Requires agreement of both appointer and co-decision-maker to vary

Revocation (whether registered or not)

May be revoked at any time by the appointer or co-decision-maker or both

Decision-Making Representation

Decision-Making Representation Court makes a declaration that relevant person lacks capacity

Court may make order:

Making the decision/s if satisfied matter is urgent or it is expedient to do so

Make an order appointing a Decision-Making Representative

In making order takes account of any EPA/AHD and in making order ensure terms are not inconsistent with EPA/AHD

In appointing DM Representative court will have regard to:

The known will and preferences of relevant person

Desirability of preserving existing relationships within family

Relationship/Compatibility between relevant person + proposed representative

Whether proposed representative will be able to perform functions

Any conflict of interest

Decision-Making Representation Order

Court will set out powers of decision-making representative

Impose duties and attach conditions and time period to apply

Ensure that powers are limited in scope + duration as necessary

May appoint one or more than one person for different decisions

Where more than one person appointed the court order shall specify whether such persons are to act

jointly,

jointly and severally or

jointly as respects some relevant decisions and jointly and severally as respects other relevant decisions

Decision-Making Representative

Court shall require representative/s to sign statement, he/she:

Understands and undertakes to act in accordance with powers conferred and duties imposed on him/her by the court

Understands and undertakes to act in accordance with the Guiding Principles

If no suitable person – the court will require Director DSS to nominate 2 or more persons from a panel for consideration by the court

Decision-Making Representative: Scope of Authority

Cannot prohibit contact with others

Authority confined to decisions included in court order

Cannot make decisions on life-sustaining treatment (consent or refusal)

Shall not restrain relevant person unless exceptional emergency circumstances

Shall not administer medication to control or modify behaviour of a relevant person

DDSS shall maintain a Register of DM Representation Orders

DDSS shall establish a panel of suitable person willing and able to act as decision-making representatives

Complaints in relation to Interveners Complaint made to the Director DSS:

Acting outside the scope of authority

Not a suitable person/unable to perform function

Not exercising authority appropriately

Fraud, coercion or undue pressure was used

Director shall consider complaints and allegations

If satisfied has substance, shall conduction an investigation (has detailed powers)

Director shall decide to take no further action or

Director shall (where complaint well founded) make an application to court for a determination

Court will determine application

Make an order if appropriate for -

Revocation of authority

Removal of instrument from Register

Court Jurisdiction

Courts Jurisdiction

Circuit Court to have exclusive jurisdiction for purposes of the Act except in specified matters where the High Court has jurisdiction such as:

Life sustaining treatment

AHD and pregnancy

Where HC is the wardship court

Review of persons for purposes of Mental Health Act 2001

Hague Convention

Circuit Court judges – specialist judges

Court Orders

Court will have power to make:

a declaration as to whether a person has capacity or not

a declaration as to the lawfulness of an intervention proposed to be made in respect of relevant person

Interim order

In relation to a matter in which the court has jurisdiction in relation to the matter

The court has reason to believe that the relevant person lacks capacity (Re F [2009] EWHC) and

In the opinion of the court, it is in the interests of the relevant person to make order without delay

Review by Court

Court must review declaration as respects capacity + orders made and if necessary revoke or amend an order

Court can seek ‘expert’ report

Special and general visitors

Appoint a ‘court friend’

Wards of Court

Review of all existing wards within a period of 3 years from operation of legislation

Application by relevant person

Another person who has an interest in the welfare of ward

Application to ‘wardship’ court

If have capacity will be discharged and property returned

If lack capacity will be discharged and assessed as to what decision-making support necessary

Co-Decision-Making or Decision-Making Representative and on registration/appointment property returned

Court will direct DDSS to exercise functions + give directions

Lunacy Regulations(Ireland) Act 1871 will be repealed

Existing Wards who are Detained Currently do not come within review provisions of MHAct

Where person who is a ward is detained

Review by wardship court as soon as possible

If on review person still suffering from mental disorder shall direct detention shall continue for period not exceeding 3mths

If still detained must be reviewed every 6 months

If wardship court decides no longer suffering from mental disorder shall order the discharge from detention

Wardship court will hear evidence from treating consultant psychiatrist and from independent consultant psychiatrist

Review of wards in approved and non-approved centres

Decision Support Service

Decision Support Service Director of Decision Support Service – Functions

To promote public awareness of the Act + matters relating to the exercise of capacity………….

To promote public confidence in the process of dealing with matters that affect persons who require assistance…..

To provide information to relevant persons in relation to their options for exercising capacity

To supervise in accordance with the Act compliance by…….

To provide information in relation to the management of property and financial affairs to relevant persons and to ……

To provide information and guidance to organisations and bodies in the State in relation to their interaction with relevant persons

To identify and make recommendations for change in practices in organisations and bodies in which the practices may prevent a relevant person from exercising his/her capacity

Investigations by Director Director may investigate on own initiative or in response to a

complaint

May summon witnesses and examine them on oath

Require the witness to produce any document under his/her power or control

By notice in writing require any person to provide such written information as the Director considers necessary

Director can investigate complaint even though complainant may be entitled to bring court proceedings

Director may seek resolution of complaints in such manner (including by informal means) as Director considers appropriate and reasonable

Director shall draw up procedures and publish them

Person can be guilty of offences if fails to comply or hinders/obstructs Director in the performance of functions

Registers and Panels Director shall establish and maintain a Register

Co-Decision Making Agreements

Decision Making Representation Orders

Enduring Powers of Attorney

Advance Healthcare Directives

Director shall establish a panel of suitable persons willing and able to act as –

Decision-making representatives

Special visitors

General visitors and

Court Friends

Codes of Practice The Director may

Prepare and publish a code of practice

Request another body to prepare a code of practice

Approve a code of practice prepared by another body

For the guidance of ……to include persons acting as advocates on behalf of relevant persons

Where the Director minded to exercise powers, shall consult with

HSE, HIQA, NDA, CIB

Representatives of professional bodies in healthcare, social care, legal and financial sectors

Representatives of healthcare, social care, legal and financial professionals

Code of Practice shall be admissible in legal proceedings

Hague Convention

Hague Convention on International Protection of Adults Measures or court orders from Hague Convention

countries will be recognised and enforceable in the State

Irish measures or court orders will be recognised and enforceable in other convention countries

…..subject to the provisions set out in the Act in the implementation of the Convention

Key Implications of the Act in Practice Statutory obligations - the need to respect rights of each

person as an individual human being, autonomy and self-determination – cultural shift required

How legislation is implemented in practice – quality of education and training – individual and institutional obligations to know and understand the law

Providers of Services must ensure legal requirements are adhered to and standards are met- this will require a change from existing practices

Implications for systems and structures

Must be materially different from existing

Must have vision to drive change

Must be an understanding of what is actually required

Thank You