Advance Care Planning: The Legal Framework

1. Advance Care Planning:The Legal Framework Professor Colleen Cartwright,Director Aged Services Learning & Research Collaboration* Southern Cross University Adjunct Professor, UNSW Medical Faculty, Rural Clinical School colleen.cartwright@scu.edu.au * Proudly Sponsored by Banana Coast Community Credit Union

2. History • Concept & term “Advance health directives” first proposed by Kutner,1967 • US Patient Self Determination Act 1990 (Advance Directives given by giving Durable Power of Attorney or writing a Living Will) • UK, 1993 High Court decision (Re C -Adult: Refusal of Medical Treatment) supports AHDs; House of Lords decision to withdraw tube feeding from a patient in PVS (Re: Bland) set precedent; 2005 - legislation confirms status of AHDs • Canada and Netherlands have provision for Advance Directives and proxy decision-making

3. Australian Legislation - 1

4. Australian Legislation - 2

5. NSW Legislation Relating to Advance Care Planning • Powers of Attorney Act 2003 allows appointment of Enduring Power of Attorney for financial and property matters – EPA does not give authority to make medical decisions • Guardianship Act 1987 allows for appointment of Enduring Guardian, who can be empowered (by the appointor) to exercise some or all of the following functions, once the appointor loses capacity: (a) decide where appointor shall live (e.g. RACF); (b) decide health care appointor shall receive (c) decide what other personal services appointor shall receive (d) give consent for medical and dental treatment (e) other functions as specified by appointor in EG document

6. NSW Legislation Re: Advance Care Planning: 2 • If no AHCD which meets current situation, authority to give consent to, or refuse treatment passes to the “person responsible” who is the first readily available and culturally appropriate in the following hierarchy: • Guardian (appointed by Tribunal) • Enduring Guardian (appointed by person themselves) • spouse, provided the relationship is close and continuing • carer: person who provides domestic services and support or arranges for such provision (but not professional carer) • close friend or relative of the person (e.g. someone who maintains both a close personal relationship with the person and a personal interest in their welfare).

7. Legal Status in NSW of AHCDs • No specific legislation in NSW that codifies use of AHCDs (there is in 5 other states/territories) • General agreement that they are covered by the common law right, which every competent person has, to refuse treatment (even life-saving treatment) - but no test case yet • NSW Health – Using Advance Care Directives – advises health-care professionals to respect AHCDs unless there is a very strong reason to do otherwise, or they may find themselves in court (supports common law presumption)

8. Priority for Health Decisions in NSW • Advance Health Directive • State-Appointed Guardian • Patient-Appointed Enduring Guardian • Person Responsible • Public Guardian

9. Need for Specific AHD Legislation? YES • To protect gains already made and to provide certainty to patients and health care providers. This is under attack: • ACHSE NSW Law Bulletin Article: To Declare Or To Direct? End Of Life Issues, April 2005, claimed: • the legality of AHDs is unclear: Response: this is arguable where there is no specific legislation but legislation would clarify the issue • patient may have been suicidal when they made the AHD: Response: which is why it should be witnessed by a doctor who testifies to patient’s capacity. Also, time since completion? • patient may not have been competent: Response as above

10. Incompetence is Not: • Ignorance (e.g. because patient has not been given adequate information) • Eccentricity, cultural diversity or having different ethical views • Communication failure • Bad decisions • Disagreeing with health care provider

11. ACHSE NSW Law Bulletin Article (cont) • wishes may not be clear: Response: requires a well-drafted document • patient may have changed his/her mind: Response: research shows patients’ wishes generally remain stable or change to wanting less – not more - treatment – but regular review is recommended. In the absence of evidence that the patient had changed his/her mind, previously- expressed wishes should be paramount. • Some medical practitioners may use AHDs instead of good communication: Response possibly, but if so, unlikely that their communication on end-of-life issues would be of a high standard with or without AHD - recognised deficit in many medical practitioners and an issue that is now being addressed in Australian medical schools.

12. ACHSE NSW Law Bulletin Article (cont) • In the presence of AHD, doctors are not able to provide what they feel is in the patient’s best interests at that particular time: Response: a properly executed AHD expresses what the patient feels would be in his/her best interests at that particular time – should have more weight • Might not be what the family wants: Response: as above – what the patient wants is more important • Enduring Guardianship should be “advisory only” Response: seeks to return to medical paternalism instead of patient autonomy and doctor-patient partnership.

13. Recent discussion document from Aust Catholic Bishops’ Committee • Statements by patients about their future care are by nature hypothetical: Response: true to some extent but often based on experience with loved ones and/or personal experience of illness • It is likely that some Australian jurisdictions may make these statements statutorily enforceable: Response: some already have and it is probable common law prevails in others • This would be a mistake … Health professionals, patient representatives and families should treat (such) statements as guides rather than directives: Response: this would remove one of the main benefits of completing an AHD, i.e. the certainty that wishes will be respected – vis insurance policy.

14. Other Statements from Bishops • Healthcare professionals cannot be obliged to implement an unethical or unreasonable refusal of … care: Response: in whose opinion is it unethical or unreasonable? This is also contrary to the common law right of any competent patient to refuse any treatment, even life-saving treatment. If patient autonomy is respected for competent patients, it is discriminatory to refuse it to those no longer competent and if treatment is given against wishes of patient, may constitute assault. • If (above) legally enforceable, healthcare professional may need to withdraw from the situation. Response: if a healthcare professional cannot abide by a patient’s decision, s/he should withdraw from the patient’s care

15. Other Statements from Bishops • Ordinary life-sustaining measures such as tube feeding should be continued, provided they are beneficial and not overly burdensome to the patient or others(?): Response: who decides if they are beneficial or overly burdensome if the patient has lost capacity? Such treatment often is not sustaining life but is prolonging dying; may also deprive person of a peaceful death. • Other statements re: proxies not in accord with current law. (Mostly incorrect)

16. Current Issues in NCAHS - 1 • No provision on hospital admission forms for recording existence of AHCD. • GP who sent AHCD to hospital where one his older patients is regularly admitted had form returned and was told, “Tell the patient to bring it with them when they are next admitted” • No provision on hospital admission forms for recording existence of Enduring Guardian - forms do not comply with legislation – still ask for Next-of-Kin • Next-of-Kin has no legal status in relation to making medical decisions • Patients being admitted to hospital who present Enduring Guardian form are being told “Oh we don’t use those. Who is your Next-of-Kin?”

17. Current Issues in NCAHS - 2 • Current situation puts hospital – and potentially health care staff - at legal risk (confirmed by discussion with A/Prof Cameron Stewart, Law School, Macquarie Uni). • Office of Public Guardian also confirmed that, under the legislation, it is the responsibility of the treating medical practitioner to ascertain if the person has appointed an Enduring Guardian and, if not, who is the correct “person responsible”.

18. Current Issues in NCAHS - 3 • Scenario: patient presents for admission, has EG form, told “Not required, who is your Next-of-Kin?” • Patient tells EG, “They would not accept the form.” • Patient loses capacity, doctor asks N-o-K for decision • N-o-K gives consent for treatment that EG knows the patient absolutely did not want • Patient ends up in PVS, coma, other negative QoL situation • EG takes hospital to court; doctor may have some defence (unless patient told her/him before losing capacity that s/he had EG), hospital would have none – admission staff may also be at risk

19. Current Issues in NCAHS - 2 • What do we need to do? • Change admission forms • Change computer programs to reflect changes • Ensure AHCD & EG forms go into patients’ medical records and alert is put on record and in computer • Educate staff – admissions; medical records; medical and nursing; allied health (other? – advice from participants?)

20. What do we need to do (cont.) • Continue educating community members and empower them to ensure that their forms are recorded and wishes respected • Make completion of AHCD & EG forms a routine part of general practice (EG forms can be witnessed by Clerk of the Courts – does not require cost of solicitor, e.g. for pensioner; AHCD forms can be witnessed by JP)

21. Advance Care Planning in Residential Aged Care Facilities -1 • Ensure Admission forms ask if resident has: • given Enduring Power of Attorney to someone (most already do) and ensure that staff know that EPA does not give the person appointed the authority to make health care decisions. If financial problems arise (e.g. non-payment of facility fees), do not wait for many weeks or months before taking action – contact OPG as soon as a problem arises; • appointed an Enduring Guardian. If so, check form to ensure EG has authority to make health care decisions • if no EG, establish who is “Person Responsible”, i.e. (spouse; carer; close friend or relative)

22. ACP in RACF -2 • Ask if resident has completed an Advance Health Care Directive. • if yes, ask for copy; • if not, and resident is competent, offer support to resident to complete AHCD • if resident is not competent, invite EG or Person Responsible to complete Preferred Treatment Statement • use AHCD or PTS, in consultation with resident’s GP, to develop care plan for possible future end-of-life or crisis care – check with competent resident, or EG/PR of non-competent patient that the plan is acceptable • RACF staff say residents often admitted to hospital because, “we cant get the GP to come” – if planning is undertaken well, probably don’t need the GP to come