Advance Care Planning: What is it and Why is it Important?

1. Advance Care Planning: What is it and Why is it Important? Professor Colleen Cartwright, Director Aged Services Learning & Research Centre Southern Cross University Adjunct Professor, UNSW Medical Faculty Rural Clinical School colleen.cartwright@scu.edu.au

2. Context • Better living conditions/health care have led to increased longevity – this is a success story, and it has rightly been celebrated as such. • In addition, rapid technological development has allowed people who would have previously died to be kept alive for long periods of time, often through the use of such things as ventilators and PEG tubes. • But • These successes have led to practical, legal & ethical issues, in particular around end-of-life care and extending the dying process

3. “60 & Better” • Fears and concerns in the general community • Cases Reported • Loved one “left hooked up to machines until the very end. We couldn’t even get close enough to give him a hug and say goodbye”. • “Mum always said she wouldn’t want to be resuscitated if her heart stopped, but they wouldn’t listen”. • “I want to make sure that doesn’t happen to me”

4. Carers’ Stories • (Husband) Close to the end of her life, “because the cancer was attacking the bone and she had bad pain in her hip, they put a pin in. And … I wondered why, if they knew she was so crook, why did they do that, because it was a terrible mess…It just added to her pain. And they gave her more chemo as well…and they took numerous X-rays, 3 or 4 a day”. • (Daughter). “She said that the medical staff were running through her room ‘like a gravy train’. She didn’t know most of the time what they were there for or what they were doing… they usually just said something like ‘Now we’re just taking you down to test you for (whatever)’… They never asked her permission”.

5. Carers’ Stories -2 • (Husband – who felt that the specialist just could not accept “defeat”). “Because of (X – specialist) they were still trying to cure her but it was not any point. They were doing everything. Everyone was making out that this was going to be the answer, when they knew damn well it wasn’t”. • (Wife) “First of all he was stubborn when he was in hospital; he wouldn’t eat - he was just starving himself. They couldn’t get him to eat … so they had to force-feed him. They put a tube down his nose and then they had to tie him in the bed, because he kept pulling it out. He just didn’t want it”.

6. Confusion About what is/is not Euthanasia • Many problems stem from confusion over what is, or is not, euthanasia. This leads to: • Inadequate pain management • Inappropriate use of medical technology • Fear among health professionals of legal consequences of care provision • Poor doctor-patient communication • Disillusioned patients/families/carers

7. Common Beliefs • Some commonly held beliefs are that euthanasia includes: • giving increasing amounts of needed pain relief which may also have the effect of shortening the person's life; or • respecting a patient's right to refuse further treatment; or • withholding or withdrawing life support systems that have ceased to be effective or that will provide no real benefit to the patient None of these is euthanasia

8. Definitions of Euthanasia • The World Medical Association defines euthanasia as "the deliberate ending of a person's life at his or her request, using drugs to accelerate death" (Brown et al., 1986:208). • Definition used in studies by Steinberg et al, 1996a & b, 1997; Cartwright et al, 1998 & 2000 • Euthanasia is a deliberate act intended to cause the death of the patient, at that patient’s request, for what he or she sees as being in his/her best interests (i.e. Active Voluntary Euthanasia – AVE).

9. Giving Pain Relief Which May Also Shorten the Patient's Life • Often referred to as "the doctrine of double effect“ - primary intention is to relieve pain, secondary, unintentional effect may be the hastening of the person's death. • Accepted by most religious and medical groups, including those who strongly oppose euthanasia. • Even the term "double effect" is problematic and unhelpful, particularly in a palliative care situation, as it may lead to undertreatment of pain. • Not giving adequate pain treatment when needed may shorten life: patient may suffer complications such as life-threatening cramps or severe respiratory problems if severe pain is left untreated

10. Respecting a Patient's Right to Refuse Treatment • This is a legal and moral right possessed by every competent person, under both common law and, in some States/ Territories, under statute law relating to assault; also by non-competent patient by AHCD or Enduring Guardianship. • Difficult area for some health professionals to accept, especially such things as a person refusing a blood transfusion because of religious beliefs. (NB: They cannot legally refuse for a child)

11. Withholding/Withdrawing Futile Life-Supports Systems • Used to be called "passive euthanasia”; general agreement that that term is unhelpful - it can lead to the inappropriate continued use of invasive technology. • Often it is not prolonging life, it is merely prolonging the dying process! • Removal of futile treatment is good medical practice. However, no definition of futility in law; generally agreed, when burden outweighs benefits – but “burden” and “benefit” should be from patient’s viewpoint.

12. Community Concerns in Terminal Illness: Rank Order

13. Advance Care Planning Helps to Address Fears & Concerns • Financial Mechanisms: • Enduring Power of Attorney • Family Agreements (a.k.a. independent care agreements, personal services contracts, lifetime contracts). (Written agreements give greater certainty). • Health/Personal Care Mechanisms: • Advance Health Care Directives • Enduring Guardianship • Person Responsible • Discussion with Health Care Provider/Noted in File

14. Enduring Guardianship -1 • A competent person over 18 can appoint an Enduring Guardian (EG) to make personal & lifestyle decisions and/or decisions about medical treatment on their behalf, in case they lose the capacity to make own decisions. • EG must be: • at least 18 years old • is usually a trusted relative or friend. • EG cannot be a person who, at the time of appointment: • provides medical treatment or care to the person on a professional basis; or • provides accommodation services or support services for daily living on a professional basis; or • is a relative of one of the above.

15. Enduring Guardianship - 2 • A person can appoint more than 1 EG. • If more than 1 is appointed, the principal needs to state how they will make their decisions (jointly or severally). (Note: Can also appoint an alternative EG in case original EG dies or becomes incapacitated). • EG must agree to the appointment, should understand the principle’s wishes and be prepared to carry them out • Appointment must be in writing, in approved form • Form must be signed by principal, EG and witness (solicitor, barrister, Registrar of the Courts) – signatures can be witnessed separately

16. Advance Health Care Directives • An Advance Health Care Directive • is a written document, allowing a person to make their wishes for future health care known • extends the current right of a competent person to refuse treatment to a future time when they may not be competent • is NOT a form of euthanasia, as it only allows actions which a person could legally consent to for themselves if they were competent to speak • only comes into effect when the person making it loses decision-making capacity.

17. Support for Advance Health Care Directives

18. Other Statements of Support for AHCDs from Health Professionals

19. Barriers to Use of Advance Health Care Directives

20. Benefits of Advance Health Care Directives • Gives control back to patient • Ensures patient’s wishes are known - patient’s own words • Assists health care provider with decision-making • Relieves family stress at time of trauma • Gives security in relation to future events (allows person to live well now by taking away fear of end stage of life) • Makes best use of community resources

21. Where Should an AHCD be Kept? • Copy in GP File • Copy with Enduring Guardian • Copy accessible at home • On admission to hospital or residential aged care facility, copy should be placed in patient record, to be available for subsequent admissions/guide care plans. • (old lady – in plastic sleeve, “blue-tacked” to fridge)

22. What if there is no AHCD or EG? • “Person Responsible”: The first readily available & culturally appropriate of • a spouse (including de-facto and same sex spouse) • a (non-professional) carer • a close relative or friend, of the patient (Note: NOT Next-of-Kin and may not be the person the patient would have chosen to make their decisions) • Note: For a person in a residential aged care facility (previously called a nursing home), the “carer” is not a staff member at the facility. Usually it would be whoever was the carer before the person went to the facility)

23. When Does a Person Have Capacity to Make A Decision (e.g. EG/AHCD)? • Person is competent unless proved otherwise • Person must understand the nature and the effect of the decision to be made – (case study); • Person must be able to communicate their decision in some way - not necessarily by speaking or writing - body language may be adequate, e.g. nodding/ shaking head • (case study)

24. Incapacity is Not: • Ignorance • Eccentricity, cultural diversity or having different ethical views • Communication failure • Bad decisions • Disagreeing with health care provider

25. Issues in AHS - 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?”

26. Issues in AHS - 2 • Current situation puts hospital – and potentially health care staff - at legal risk • Office of Public Guardian 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”.

27. Issues in AHS - 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

28. Issues in AHS - 4 • What do we need to do – in hospitals & RACF? • 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; pastoral care

29. What do we need to do – in the Community? • Continue educating community members and empower them to ensure that their forms are recorded and wishes respected • Make completion of EG & AHCD forms a routine part of General Practice, and of admission to RACF; also, educate solicitors to tell clients about EG and AHCD when they make a will or Enduring Power of Attorney • (Note: EG forms can be witnessed by Registrar of the Courts – does not require cost of solicitor; AHCD forms can be witnessed by Registrar or JP)