1. National Dementia Care Conference National Dementia Care Conference Radisson Blu St Helens Hotel, Stillorgan Road, Blackrock, Co. Dublin Advance Planning Patricia T Rickard-Clarke2 March 2016

2. Overview International Obligations in relation to older people Current Position Assessment of decision-making Planning in Advance Enduring Powers of Attorney Advance Healthcare Directives

3. Council of Europe Recommendation on the Promotion of Human Rights for Older People CM/REC 2014 The purpose ….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. 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 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 Enduring Powers of Attorney

5. Guidance for Dementia Care (HIQA) Older people with dementia have an inherent dignity, value and personhood which remains with them throughout the whole course of the disease and should be respected at all times The values, beliefs, cultural and spiritual backgrounds of people with dementia and their families should be incorporated into the planning and delivery of care. It is important that people with dementia and their families are consulted with and supported to participate in care and decision-making at the level they choose The right to self-determination of all persons with dementia no matter where they are in the disease progression should be respected. The right of residents with dementia to decline admission to residential care, treatment and/or care is respected. This means ensuring that choices are provided, the person’s wishes are taken into consideration, and their consent obtained.

6. Practical Issues – Current Position Decisions are required when vulnerability is an issue Rights of older person are not respected Wishes of older person are not known – when consent is required for treatment/who has authority to give consent What is the appropriate place of residence Nursing Home Support Scheme (Fair Deal) – issues Access/Management of finances an issue Vulnerability gives rise to unintentional and intentional abuse by both individuals and institutions Delays in the health/care services where there is no plan in place Personal obligation to plan in advance Culture and practice must change – living v inheritance

7. Assisted Decision-Making (Capacity) Act 2015 Enacted in December 2015 and planned to come into operation in latter part of 2016 Who is it for: A person whose decision-making capacity is in question or may shortly be in question and a person who lacks capacity Provisions in relation to planning in advance: Statutory scheme for Advance Healthcare Directives Reform of Enduring Powers of Attorney legislation Guiding Principles set out in the Act must be followed with the emphases on the requirement to respect human rights the ascertainment of ‘will and preferences’ before any intervention is made

8. Assessment of Capacity Current legal position - A person’s decision-making capacity is to be construed functionally (FK case) National policies (HSE and Medical Council Guide) now in statutory form in the 2015 Act 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] –)

9. 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 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 No assessment tool – the legislation provides – assessment of individual decision-making related to individual circumstances

10. 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) 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

11. Guiding Principles Statutory presumption of capacity 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 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)

12. Advance Healthcare Directives

13. Advance Healthcare Directives Consent to Treatment Legal Principle Person has a right to consent to and to refuse medical treatment Capacity to consent to and refuse medical treatment Informed Decision-Making 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 if persons has made an AHD – if valid it must be followed Right to autonomy must be respected

14. AHD – Present Position Current legal position – legally recognised by the courts and should be followed if ‘valid and applicable’ Now in statutory format in the Assisted Decision-Making (Capacity) Act 2015 An AHD made outside the State but which substantially complies with the requirements [in the Act] ….shall have the same force and effect in the State as if it were made in the State

15. What is an AHD? An advance healthcare directive: means an advance expression made by the person of his or her will and preferences concerning treatment decisions that may arise in respect of him or her if he or she subsequently lacks capacity

16. Purpose of making an AHD Purpose: To enable persons to be treated according to their will and preferences To provide healthcare professionals with important information about persons in relation to their treatment choices A person who has attained the age of 18 years and who has capacity is entitled to refuse treatment for any reason (including a reason based on his or her 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

17. 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

18. 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. (This includes artificial nutrition and artificial hydration). Basic care is not treatment and therefore an AHD is not applicable to basic care Includes (but is not limited to) warmth, shelter, oral nutrition, oral hydration and hygiene measures Law on AHD does not affect the existing law on euthanasia or assisted suicide – still crimes under Irish law

19. 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 in the AHD 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

20. 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 healthcare record and Give copy of reasons as so recorded to person’s designated healthcare representative (if any) as soon as practicable but in any case, not later than 7 working days after they have been recorded

21. 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 (involuntary detention) 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.”

22. 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 materially the same as the specific treatment set out in AHD that is requested or refused At the time in question the circumstances set out in AHD as to when the specific treatment is to be requested or refused, are absent or not materially the same

23. Ambiguity Where an ambiguity arises as to the validity or applicability of AHD - healthcare professional will in an effort to resolve the ambiguity: Consult with designated healthcare representative/attorney (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 resolved, healthcare professional shall resolve the ambiguity in favour of the preservation of the directive maker’s life

24. 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 and preferences as determined by reference to the directive

25. 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 the AHDirective 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 AHDirective 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

26. Liability Failure to comply with a valid + 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

27. Codes of Practice for AHD The Minister for Health to establish a multidisciplinary working group of suitable persons able and willing to make recommendations to the Director of Decision Support Service in relation to codes of practice The Director may prepare and publish a codes of practice for the purpose s of the guidance of designated healthcare representatives and healthcare professionals Code of Practice shall be admissible in legal proceedings

28. Registers Director of Decision Support Service shall establish and maintain a number of Registers which will include Registers on: Advance Healthcare Directives Enduring Powers of Attorney The Minister to make regulations to provide for: The Directive maker to give notice of the making of an AHD to the Director DSS and to other specified persons

29. Offences A person who uses fraud, coercion or undue influence to force another person to make, alter or revoke and advance healthcare directive commits an offence A person who knowingly creates, falsifies or alters, or purports to revoke, an advance healthcare directive on behalf of another person without that other person’s consent in writing when the other person has the capacity to do so commits an offence

30. Enduring Power of Attorney

31. EPA – Present Position Powers of Attorney Act 1996 A person (donor) when they have capacity may give authority to another person (attorney) to make decisions on their behalf at a time when they lack capacity to decide for themselves. EPAs created under the 1996 Act do not include healthcare provisions No reporting requirements under 1996 If difficulties – necessary to make an application to the High Court EPA legislation now reformed and updated

32. 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

33. 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

34. 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

35. 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

36. 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

37. 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

38. Decision Support Service

39. 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

40. 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

41. Conclusions On the coming into operation of 2015 Act there will be a statutory requirement to assess decision-making capacity on a functional basis and to assist a person to maximise his/her capacity and to participate in decision making in decision-making in so far as that is possible The right to autonomy and self-determination must be respected and every opportunity availed of to ascertain a person’s will and preferences Good practice requires that a person is alerted to the need to plan in advance to give healthcare professionals important information about care choices

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

43. Thank You