1. Legalities of End of Life Care Conference 2015 Advance Healthcare Directives And Enduring Powers of Attorney Patricia T Rickard-Clarke 1 October 2015 Patricia T Rickard-Clarke14 September 2015

2. Overview Context for proposed legislation Proposed legal framework Planning Ahead Advance Healthcare Directives Treatment Refusals Treatment Requests Enduring Powers of Attorney Property and Affairs Decisions Healthcare Decisions Hague Convention

3. National and International Obligations Constitution of Ireland The European Convention on Human Rights Council of Europe Recommendation (99)4 of the Committee of Ministers to Member States on Principles Concerning the Legal Protection of Incapable Adults February 1999 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)

4. Assisted Decision-Making(Capacity) Bill Decision-making Capacity (not mental capacity) Lunacy Regulations (Ireland) Act 1871 to be repealed Definition of Capacity Assessment of Decision-Making Capacity (to be construed functionally – legal test) Advance Healthcare Directives Statutory provisions published by DoH 2014 incorporated in to the 2013 Bill on 17 June 2015 Powers of Attorney Act 1996 On enactment of ADMC legislation will cease to have effect for any EPAs made under 1996 Act but not registered Unregistered 1996 EPAs and new EPAs executed since the commencement of the ADMC legislation – new rules

5. General Rights and Principles informing new legislation All persons have equal legal rights A person’s rights to his or her dignity, bodily integrity, privacy, autonomy and control over property and finances must be respected Any necessary intervention must minimise restriction on a person’s rights All persons have the right to consent to and to refuse medical treatment Principle of autonomy and self-determination must operate in the wider legal and ethical setting and for all professions

6. Decision-Making Capacity Capacity (Decision-Making Capacity not mental 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 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 Guiding Principles that shall apply for all purposes

7. Planning Ahead Planning done in advance (personal appointments): Advance Healthcare Directive Wishes set out Advance Healthcare Directive Designated Healthcare Representative has authority Enduring Power of Attorney Attorney has authority Informal arrangements – will and preferences

8. Advance Healthcare Directives

9. Legal Principle – Person has a right to consent to and to refuse medical treatment – Capacity to consent to and refuse medical treatment Legal Capacity – rights equal to all others – Person whose decision-making capacity is at issue still has the legal right to consent to and refuse medical treatment – May not have the decision-making capacity to do so but has made an AHD – if valid must be followed – Right to autonomy must be respected

10. What is an AHD? 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

11. 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 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 but does not include artificial nutrition or artificial hydration Law on AHD does not affect the existing law on euthanasia or assisted suicide

12. Formalities for AHD Must be in writing + can be revoked or altered Name, date of birth, contact details of directive-maker Signature of directive-maker and date signed Name, date of birth, contact details of designated Signature of designated healthcare representative, date signed and acknowledgement of the directive-maker Signature of 2 witnesses Over 18 year Of whom one at least not a family member Must witness signature of directive-maker + signature of designated healthcare representative AHD may be signed on behalf of directive-maker if unable to sign personally

13. Treatment Refusal A treatment refusal 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

14. 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

15. Pregnancy Pregnancy Where AHD does not specifically state whether or not she intended specific refusal of treatment in AHD to apply if she were pregnant and it is considered by the healthcare professional concerned that complying with the refusal of treatment would have a deleterious effect on the unborn, there shall be a presumption that treatment shall be provided and continued Where AHD sets out a specific refusal of treatment that is to apply even if she were pregnant and it is considered by the healthcare professional concerned that the refusal of treatment would have a deleterious effect on the unborn, an application shall be made to the High Court Criteria set out for the court

16. Mental Health AHDs apply to physical and mental health generally AHD shall be complied with unless at the time it is proposed to treat maker of AHD his/her treatment is regulated by Part 4 of the Mental Health Act or he/she is subject to a conditional discharge order under S.13A A treatment refusal in an AHD which relates to the treatment of a physical illness not related to the amelioration of a mental disorder shall be complied with. Recommendation of Expert Group: “When revised mental health legislation is being framed, it either amends the Assisted Decision-Making (Capacity) legislation if necessary or introduces provisions in mental health law to deal in a more complete and comprehensive manner with the operation of advance healthcare directives in the area of mental health in the longer term.”

17. 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

18. Ambiguity If any ambiguity about validity or applicability of AHD healthcare professional will in an effort to address ambiguity: Consult with designated healthcare representative (if any) or, if no representative with directive-maker’s family and friends and Seek the opinion of a second healthcare professional If ambiguity still not addressed, healthcare professional shall address the ambiguity in favour of the preservation of life

19. Designated Healthcare Representative Person can designate a named individual (or alternate) to exercise the powers of a designated healthcare representative If representative agrees to exercise powers must sign AHD to confirm willingness to do so in accordance with will + preferences as determined by reference to the directive Such person Has reached age 18 years Has not been convicted of an offence in relation to person or property of directive-maker Is not a person who provides personal care or healthcare service to maker of AHD for compensation unless…. Is not the owner or employee of a residential or healthcare facility where the maker of AHD resides unless….

20. Authority of Representative Ensure that the terms of AHD are complied with The maker of an AHD may confer on his or her patient-designated healthcare representative (DHRep) The power to advise and interpret what the directive-maker’s will and preferences are regarding treatments as determined by the DHRep by reference to AHD 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 as determined by the DHRep by reference to AHD DHRep 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

21. 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

22. Register of AHD 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

23. Powers of Attorney

24. Powers of Attorney Act 1996 – in effect an agency arrangement Ordinary Power of Attorney Operational when capacity exists Automatically at an end if person lacks decision-making capacity Enduring Power of Attorney Plan ahead – make EPA when have capacity Only comes into effect when lack decision-making capacity Assisted Decision-Making (Capacity) Act There will be an obligation to ascertain will + preferences and to take account of beliefs + values even when registered Generally Rights and Obligations – obligation to make provision Should be part of care plan

25. What is an EPA? Donor (person making the EPA) executes a formal document creating an EPA stating he/she intends EPA to come into effect at any subsequent time when he/she lacks capacity or may shortly lack capacity Appoints an Attorney/s To look after his/her personal welfare (which will now include healthcare matters) To manage his/her property and affairs Authority both to look after his/her personal welfare and capacity to manage his/her property and affairs No restraint unless in exceptional emergency circumstances The person making the EPA may confer very limited power on the attorney if they so wish or give general authority

26. 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

27. Formalities for EPA Prescribed form for an EPA Statement by donor that understands the effect of creating an EPA Legal practitioner must certify that satisfied that donor understood the effect of making EPA and no reason to believe that that the document is being executed as a result of fraud or undue pressure Registered medical practitioner, must state that in his or her opinion the donor had capacity, with assistance of explanation as may have been given, that donor understands the effect of creating the EPA (SCR [2015] IEHC 308 – it is a legal test) Attorney must sign to confirm that he/she understands and undertakes to act in accordance with functions of an attorney to include Guiding Principles, in the interest of donor, obligations to report to DDSS Notice must be served on specified people (to include family member) at the time of execution

28. Suitable Person Suitable person – extremely important – does not have to be a family member Some persons cannot act as attorney owners or registered providers of residential facilities Excluded persons Can appoint more than one person (jointly/severally) Donor can appoint a substitute in the event that original dies or becomes incapable of acting Attorney cannot appoint a substitute or delegate

29. Registration of EPA To come into effect the EPA must be registered in court Application by attorney/s Assessment of capacity Donor is notified of application Operation of EPA Copy of Registered EPA must be obtained Ensure Attorney/s has/have authority to make specific decision – it is general authority or limited authority Ensure will + preferences/beliefs + values of individual are ascertained where possible (even where EPA registered)

30. Register and Reports Director of Decision Support Service shall establish and maintain a register of registered EPSs 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

31. Existing EPAs 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

32. Hague Convention

33. Ireland signed the Hague Convention on International Protection of Adults 2000 in 2008 and proposes to ratify it on the enactment of the Decision-Making (Capacity) Act Purpose is to avoid conflict of law situations in respect of : Jurisdiction Applicable law Recognition and enforcement In respect of measures for the protection of adults or their property - the respect for a person’s dignity and autonomy are to be the primary considerations

34. Jurisdiction The legislation will set out the court’s jurisdiction in relation to: An adult habitually resident in the State An adult’s property in the State An adult present in the State or who has property there, if the matter is urgent, or An adult present in the State, in so far as the exercise of functions is temporary and limited in its effect to the State

35. Applicable Law The court will apply the law of Ireland but may …., if it thinks that the matter has a substantial connection with a country other then Ireland, apply or take into consideration the law of that other country Where a measure is taken in one contracting state but implemented in another, the conditions of implementation shall be governed by the law of the state where it will be implemented Applicable law for EPAs If donor habitually resident in Ireland at time of making – Irish law will apply unless donor has stipulated law of connected country If donor habitually resident in a connected country, law of connected country will apply unless donor stipulated Irish law

36. Recognition and Enforcement A measure taken in relation to an adult Under the law of a country other than Ireland is to be recognised in Ireland if taken on the basis of habitual resident in other country The court may refuse recognition of a measure if of view that: The case was not urgent The adult was not given an opportunity to be heard and The omission amounted to a breach of natural justice Measure would be manifestly contrary to public policy Measure would be inconsistent with a mandatory provision of the law of the State Measure is inconsistent with one subsequently taken or recognised in the State in relation to the adult

37. Assisted Decision-Making Capacity Act Timetable for enactment Report Stage due in October in Dáil Then to Seanad To be enacted in 2015

38. Important Contacts Third Age/SAGE SAGE Support and Advocacy for Older People www.sage.thirdageireland.ie Irish Hospice Foundation – Forum for End of Life Think Ahead project Think Ahead form www.thinkahead.ie

39. Thank You