1. Assisted Decision-Making (Capacity) Legislation Patricia T Rickard-Clarke Chair: National Advisory Committee

2. Promotion of Human Rights of Older People “It is all about Human Rights” Baroness Hale, UK Supreme Court

3. Council of Europe Recommendation Council of Europe Recommendation CM/REC 2014 The purpose of the present recommendation is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all older persons, and to promote respect for their inherent dignity (Para 1) Older persons … are entitled to lead their lives independently, in a self-determined and autonomous manner. This encompasses, inter alia, the taking of independent decisions with regard to all issues which concern them, including those regarding their property, income, financial, place of residence, health, medical treatment or care…(Para 9)

4. Lunacy Regulations (Ireland) Act 1871

5. Overview Why Ireland needs reformed legislation – existing structures Assisted Decision-Making (Capacity) Bill 2013 Planning Ahead Advance Healthcare Directives Enduring Powers of attorney Advocacy within the legislative framework Impact of legislation Conclusion

6. Existing Structures Definition of Capacity – not defined in legislation so different approaches apply 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 Wards of Court Lunacy Regulations (Ireland) Act 1871 Status approach to capacity Discriminates on grounds of a disability Mainly concerned with property matters No participation by person subject of application No review

7. Existing Structures Advance Healthcare directives Legally valid and recognised by courts But no statutory provision/legal uncertainty Enduring Power of Attorney No provision for health care decisions No proper reporting requirement/accountability when registered (Minimal recognition to right of autonomy and self-determination) Deprivation of Liberty/Restraint Decision with regard to place of residence not considered Come within provisions of ECHR but No clear legal procedural rules Right to private property Issue of financial abuse not addressed Cultural ‘right to inheritance’

8. National and International Obligations Constitution of Ireland The European Convention on Human Rights UN Universal Declaration on Bioethics and Human Rights 2005 UN Convention on the Rights of Persons with Disabilities 2006 (signed by Ireland 2007) Council of Europe Recommendation on Principles concerning Powers of Attorney and Advance Directives for Incapacity September (2009) Council of Europe Recommendation on the Promotion of Human Rights of Older Persons (2014)

9. Legislative Framework Decision-making Capacity (not mental capacity) Lunacy Regulations (Ireland) Act 1871 to be repealed Progressive piece of legislation To be in compliance with UNCRPD Challenges Advance Healthcare Directives Statutory provisions published by D of H 2014 incorporated in to the 2013 Bill on 17 June 2015 Powers of Attorney Act 1996 Reform and updating – many more safeguards To include healthcare decision

10. Definition of Capacity A person’s decision-making capacity is to be construed functionally Capacity - ability to understand at a time a decision has to be made, the nature and consequences of the decision to be made by a person in the context of available choices at that time (No blank canvass KK case) Lack of Capacity – unable to understand information relevant to decision retain that information long enough to make a voluntary choice use or weigh that information as part of the process of making the decision or 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

11. 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 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

12. How is capacity to be assessed? A person is not to be regarded as unable to understand information relevant to a decision if they are able to understand an explanation of it given in a manner appropriate to circumstances. 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 (When there are doubts assessment should be done at highest level of functioning) 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

13. Who will assess Capacity? In line with functional assessment – time specific, issue specific requirement Will depend on particular decision to be made Generally it will be the person who needs the decision to be made Consent to medical treatment – healthcare professional Legal transaction - Will, EPA, solicitor handling transaction Everyday decisions - Carer Formal processes may be required If assessment is challenged Serious decision – person must be able to justify findings Document: Justify findings based on criteria

14. Guiding Principles for any intervention Presumption of capacity unless the contrary is shown Relevant person shall not be considered as unable to make a decision unless all relevant steps taken, without success, to help him or her to do so. Making an unwise decision is not indicative of being unable to make a decision There shall be no intervention unless it is necessary to do so having regard to the individual circumstances of relevant person

15. Guiding Principles (continued) An Intervention shall be in a manner that Minimises the restriction of relevant person’s rights Minimises the restriction of freedom of action Has regard to the need to respect the right of the relevant person to his or her dignity, bodily integrity, privacy and autonomy

16. Any Intervener shall Permit, encourage and facilitate the relevant person to participate or to improve his or her ability to participate Give effect, in so far as practicable, to the past and present will and preferences, in so far as reasonably ascertainable 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 not appropriate or practicable consider view of person named by relevant person to be consulted/ other appointed Act at all times in good faith and for the benefit of the person

17. Decision-Making/Interveners Planning in advance (personal appointments) Enduring Power of Attorney Advance Healthcare Directive No pre-planning Decision-Making Assistant (personal appointment) Person has capacity but needs assistance Co-Decision-Maker (personal appointment with oversight) Person does not have capacity but may be able to decide if had assistance Decision-Making Representative (court appointment) Person does not have capacity to decide Court (declarations, interim orders, reviews + expert reports)

18. Existing Wards of Court Need to apply human rights standard – functional assessment of capacity Review of assessment of capacity Declarations by court Discharged /appropriate order/s made Transferred to new system/appropriate order/s made Application for review Person whose capacity is at issue (relevant person) Another person who has an interest in the welfare of ward Period in which review must be completed Within a 3 year period from date of coming into effect

19. Self-Determination and Autonomy

20. “I am no bird; and no net ensnares me: I am a free human being with an independent will.” Charlotte Brontë, Jane Eyre

22. Council of Europe Recommendations CM/REC (2009)11 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 CM/REC (2014)2 Member States should provide for legislation which allows older persons to regulate their affairs in the event that they are unable to express their instructions at a later stage CM/REC (2014)2 Advance Healthcare Directives Advance Healthcare Directives Enduring Powers of Attorney Enduring Powers of Attorney

23. What is an Advance Healthcare Directive? An advance healthcare directive: means an advance expression of will and preferences made by a person with capacity, …..concerning treatment decisions that may arise in the event that the person subsequently loses capacity Purpose: To enable persons to be treated according to will and preferences To provide healthcare professionals with important information about persons in relation to their treatment choices Made by a person with capacity + who is over 18 years, can refuse treatment (including a reason based on religious beliefs) notwithstanding that the refusal Appears to be an unwise decision Appears not to be based on sound medical principles or May result in death

24. Definitions What is treatment: Means an intervention that is or may be done for a therapeutic, preventative, diagnostic, palliative or other purpose related to the physical or mental health of the person, and includes life-sustaining treatment (Includes artificial nutrition and hydration) Basic care is not treatment and therefore AHD is not applicable to basic care Includes (but is not limited to) warmth, shelter, oral nutrition, oral hydration and hygiene measures (Does not include artificial nutrition or artificial hydration) Law on AHD does not affect the existing law on euthanasia or assisted suicide

25. Treatment Refusal A treatment refusal (legally binding) must be complied with if 3 conditions are met: At the time in question the maker of AHD lacks capacity to give consent to the treatment The treatment to be refused is clearly identified The circumstances in which the refusal of treatment is intended to apply are clearly identified in the AHD Refusal of Life- sustaining treatment: Must be substantiated by a statement in the AHD by the directive-maker to the effect that the AHD is to apply to that treatment even if his or her life is at risk

26. Treatment Request A request for specific treatment in AHD is not legally binding but shall be taken into account during any decision- making process which relates to treatment if that specific treatment is relevant to medical condition for which the maker of AHD requires treatment Where request for specific treatment in AHD is not complied with, the healthcare professional shall Record reason for not complying with AHD in health record and Give copy of reasons to person’s designated healthcare representative as soon as practicable but in any case, not later than 7 working days after they have been recorded

27. Validity and Applicability of AHD Not valid If not made voluntarily While person had capacity, has done anything clearly inconsistent with the AHD remaining his/her fixed decision Not applicable Person still has capacity to consent to or refuse treatment Treatment in question is not broadly recognisable as specific treatment set out in AHD as requested or refused Where specific treatment set out – the circumstances set out in AHD as to when such specific treatment is to be requested or refused, are materially absent or different Is not applicable to basic care Hague Convention If AHD made outside the State but substantially complies

28. Designated Healthcare Representative Person can designate a named individual (or alternate) to exercise the powers of a designated healthcare representative Designated healthcare representative shall: Ensure that the terms of AHD are complied with The maker of an AHD may confer on his or her designated healthcare representative The power to advise and interpret what the directive-maker’s will and preferences are regarding treatments The power to consent to or refuse treatment, up to and including refusal of life-sustaining treatment based on the known will and preferences of the directive-maker Designated Healthcare Representative shall: Make and keep a record in writing of decision (7days) Produce record for inspection at request of directive-maker if regains capacity or Director DSS

29. Register of AHDs Regulations will require Maker of AHD to give notice of the making of an AHD to the Director of Decision Support Service and to other specified persons Regulation will also require Director of Decision Support Service to establish a Register of AHD notified to him or her Director shall receive and consider complaints all allegations in relation to manner a healthcare representative is exercising his or her relevant powers Director may prepare and publish a Code of Practice based on recommendations of Working Group set up by Minister for Health

30. Liability Failure to comply with a valid and applicable AHD will give rise to: civil and criminal liability for breach of common law duty or statutory duty A healthcare professional shall not incur any civil or criminal liability if did not comply with AHD, had reasonable grounds to believe and did believe that refusal was not valid or applicable or both he or she was unaware of the existence and contents of an advance healthcare directive at the time the specified treated was carried out or continued Conscientious objections Pichon and Sajous v France (ECHR No49853/99) Conscientious objections remains a limited right derived from religious freedom that cannot lead to the restriction of the rights and freedoms of another person

31. Enduring Powers of Attorney Existing powers of attorney that have been registered will continue to have effect Existing powers of attorney that have not been registered will come within provisions of new legislation Once legislation is enacted all new EPAs must be created under the Assisted Decision-Making (Capacity) Act Principles set out in legislation will apply to attorneys There will be an obligation to ascertain will + preferences and to take account of beliefs + values even when EPA is registered

32. What decisions/Authority? Personal Welfare which will include Healthcare Decisions All Personal Welfare decisions or Specific Personal Welfare decision/s Property and Affairs: All Property and Affairs decisions or Specific Property and Affairs decision/s Both Personal Welfare decisions + Property and Affairs decisions General Authority Specific Person Welfare decision/s + Specific Property and Affairs decision/s Suitable Person

33. Register and Reports Director of Decision Support Service shall establish and maintain a register of registered EPAs Members of the Public may inspect Register Director may issue attested copies to persons who have a good and sufficient reason to have a copy An Attorney must At least every 12 months prepare and submit to the Director a report as to the performance of his or her functions as such attorney Every report shall include details of all expenses and remuneration paid or reimbursed to the attorney

34. Decision Support Service

35. Director of Decision Support Service – Courts Service Director’s 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 and guidance……. To supervise…………. To provide information and guidance to organisations………. 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

36. Registers Director shall establish and maintain a Register Co-Decision Making Agreements Decision Making Representation Orders Enduring Powers of Attorney Advance Healthcare Directives Public Register Copy can be obtained

37. Investigations by Director Director may investigate on own initiative or in response to a complaint The Director will have power to: 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 Person can be guilty of offences if fails to comply or hinders/obstructs Director in the performance of functions

38. Independent Advocacy

39. Trusted Third Party Council of Europe Recommendation CM/REC 2014 Older persons have the right to receive appropriate support in taking their decisions and exercising their legal capacity when they feel the need for it, including by appointing a trusted third party of their own choice to help with their decisions. The appointed third party should support the older person on his or her request and in conformity with her or her will and preferences (Para 13)

40. Quality Standards: Why Advocacy? Acknowledgment that some older persons need support in asserting their rights, in having their voice heard and in articulating their will and preferences. It is widely accepted that support and advocacy has an important role to play in helping services to meet the range of needs of individuals and groups who require additional support. Some Statutory provision Mental Health Act 2001 - legal advocacy for people with mental health difficulties. Disability Act 2005 provides entitlement to advocacy for persons with a disability (NAS set up on a non-statutory basis) Citizens Information Act 2007 provides for the establishment of a Personal Advocacy Service. HIQA Standards reference the role of advocacy and the need to make provision for people to have access to independent advocates Ombudsman Reports reference the important role of advocates - recommended establishment of an independent advocacy service in hospital. HIQA Report - Midland Regional Hospital, Portlaoise. Recommendation for establishment of an advocacy service for hospitals. Agreed by Minister.

41. Comparative UK – Independent Mental Capacity Advocates Provision of serious medical treatment by NHS body Provision of accommodation by NHS body/local authority Stay in Hospital longer than 28 days Stay in Care Home more than 8 weeks Canada – Seniors Advocate Act 2013 Remit – to monitor, analyse and make recommendations on broad systemic issues affecting seniors Australia – National Disability Advocacy Programme Based on UNCRPD

42. Quality Standards: What Support and Advocacy Work with Older Persons Is? Safeguarding people’s basic human rights Enabling people to tell other people what they want Helping people to know what choices they have and the likely consequences of these choices Enabling individuals and groups to have control over their lives

43. Assisted Decision- Making(Capacity) [Act] Independent advocacy – a reality Recognition of the role of Advocacy Supported Decision-Makers, Court Friends, Assist Attorneys, Healthcare Representatives Director of Decision Support Service to prepare and publish Code of Practice for the guidance of persons acting as advocates on behalf of relevant persons

44. Issues still to be addressed Deprivation of Liberty – In breach of European Convention of Human Rights – Not in compliance with provision of UNCRPD Chemical Restraint – In breach of European Convention of Human Rights – Inhuman and degrading treatment

45. Key Implications of legislation Cultural shift required - the need to respect the rights of each person as an individual human being Implications in practice - how legislation is implemented – quality of education and training 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 Providers of Services must ensure standards are met DSS make recommendations to the Minister on any matter relating to the operation of the Act

47. Faic fút féin / gan tú féin Thank you