Advance Care Directives

1. Advance Care Directives (part of the Healthy Dying Initiative, and Goals of Care Project at RHH) Prof Michael Ashby Jenny Fuller

2. Why ‘Healthy’ Dying? The idea arises from the discipline of palliative care Best practice in palliative care is to be ‘health promoting’ – the same kinds of things support a good death as support a good life Promoting health is about respecting the autonomy of the patient, maximising their comfort, minimising their suffering, and making an effort to enhance their dignity.

3. Goals of Health-Promoting Palliative Care Provide education & information for health, death & dying Provide both personal & social supports Encourage interpersonal reorientation towards a ‘natural’ death Encourage reorientation of palliative care services towards public health ideas of prevention, harm reduction & community participation Combat death-denying health policies & attitudes (See Kellehear A. Health Promoting Palliative Care Melbourne: OUP, 1999)

4. Palliative Care in Tasmania Tasmania has well established palliative care services in each of its three area health services Approximately 4,000 people die each year in the state, and about 40% of these are referred to the palliative care services These patients have a better chance of dying at home and are less likely to die in a hospital

5. Barriers to preferred care People’s preferences are often unknown Only around one third of the general public had discussed death and dying with anyone (UK) Many patients don’t receive excellent care. 54% of complaints in acute hospitals relate to care of the dying/bereavement (UK data)

6. Death & Dying Myths You cannot initiate talk of death as patients & families do not want this & you run the risk of precipitating it if you do (“don’t talk about death, it will kill him”). You have to do everything to maintain & prolong life otherwise you are causing death (“you can never give up on a patient”). Use of opioids & sedatives can contribute to the cause of death

7. Modern trends Demographic: people living longer Technical:medicine can do so much more. Professionalism:specialists needed for ‘care’ Religious/spiritual:less connection to traditional church-based supports Social:individualism, social mobility, changing nature of community, multiculturalism.

8. Pathways to death Living longer, but taking longer to die Up to two years at the end of life with: Physical deterioration and disability Increasing symptom burden Dependence More with dementia More decision points for care

9. Changes Greater interest in end of life decision making & discussion of ‘living wills’ This trend is occurring across the Western World Questions about euthanasia & control at end of life

10. Healthy Dying Initiative Both RHH and STAHS elements Advance Care Directive mostly a community focus Hope to become a State-wide application RHH implementing Goals of Care Plan which can be endorsed for continued use in community settings

11. Terminology Advance Care Planning Advance Care Directive Person Concerned Substitute Decision Maker Person Responsible Enduring Guardian

12. ACD history in Tasmania 1995 - Guardianship and Administration Act 2006 - Respecting Patient Choices Project 2006 - Clinical Ethics Committee of RHH 2009 - Clinical Network Working Party

13. Tas EG Study Preliminary results EG forms lodged with GAB in 2009 approx 10,000 (2% Tas population) Forms sampled: 502 (1:20) 238/502 (47%) made a request for palliative care 56 made requests for long term care 23 made specific requests for personal care

14. Advance Care Directive Focus on: Values, wishes & beliefs Acceptable outcomes rather than specific medical treatments End of life decisions - Can include broader care issues - May name a substitute decision maker

15. An Advance Care Directive Is NOT concerned with financial matters Will not necessarily prevent emergency treatment by ambulance crews Doesn’t mean that the expert opinion of doctors is irrelevant

16. Advance Care Directive Will only be used if you can’t understand or communicate for yourself If you can understand what you are told, make an informed choice and understand the consequences, and communicate with others, you will be asked to decide for yourself.

17. Person Responsible Substitute Decision Maker nominated by the Person Concerned OR May be an “approved” person under GA Act – either: an Enduring Guardian, Spouse, Unpaid carer, Other person with best interests at heart

18. Enduring Guardian Legally appointed using GAB form Lodged with GAB Only used if/when Person Concerned lacks capacity ONLY for health and life-style decisions Has NO role in financial management of person’s affairs

19. People without capacity Person responsible can be encouraged to complete an ACD for the person concerned if necessary/wished Same form for both direct and ‘on behalf’ directives

20. Capacity To have capacity patients must be able to understand the treatment options presented, to make an informed decision and to understand the consequences of that decision

21. Capacity Fluctuating condition People should always be consulted so far as they are able to understand May be a temporary state (eg following stroke or head injury, or psychosis) Is not an ‘all or nothing’ – may have capacity to make some decisions, but not others

22. Witnessing An ACD should be witnessed by an independent adult who: has no relationship to Person Concerned or Person Responsible has nothing to gain from process believes person writing ACD knows what it is, what it means, and that person is not under duress to write ACD

23. Why make an ACD? An ACD is a way of maintaining control of your life, at a time when you are vulnerable, and may be least able to have control An ACD will help your family/friends know what you would want if you couldn’t tell them An ACD is about your choices

24. Who should have an ACD? All of us, but especially: People who have conflicted or estranged family, or very different values People at risk of loss of capacity (eg early stage dementia) People entering Residential Aged Care People with chronic health problems People with no family

25. Benefits of an ACD More likely to receive care in place of choice Greater sense of control over treatment Less stress for families making decisions Better bereavement outcomes for families when they act in support of person’s wishes

26. Questions to ask What is most important to me? What do I think about death and dying? What do I fear about death and dying? What wouldn’t I want to happen to me? What does quality of life mean to me? Do I have any particular fears about sickness or medical procedures?

27. Choosing a SDM Doesn’t have to be family – sometimes better not Someone who knows and understands your wishes Would act in accord with YOUR wishes, not their own Can be calm and assertive in difficult situation Will be available if needed

28. Ethical obligation with ACDs ACD’s have common law status in Australia (see Hunter and New England AHS v A [2009] NSWSC 761) Doctors should respect their contents It can be argued that there is an ethical obligation to do so, regardless of the legal status in a given state or territory jurisdiction

29. Role of GP, Nurse etc Can help explain what possible events might happen Can listen and advise on decisions Can provide reassurance regarding fears Can witness your ACD Can support families and others in understanding ACD process and outcome

30. Aged Care & ACDs All residents should have detailed ACD and a Substitute Decision Maker Clear wishes may prevent unnecessary transfers to hospital for dying residents Importance of having SDM nominated and AVAILABLE

31. Changing an ACD Can be changed at any time. Each version should be clearly dated, and preferably, the old one crossed out, or thrown away If Substitute Decision Maker is changed, be sure to tell both old and new appointee Make sure copies go to same people who had old version

32. Emergencies and ACDs Ambulance officers have duty to respond by CPR etc in emergency situations Hospital staff response to ACD – withdraw or withhold treatment as indicated in ACD and by EG/PR Importance of keeping ACD up to date

33. Your choices – what to do MOST IMPORTANT – talk to family and others about your wishes Complete an ACD, give copy to important people, (incl GP, hospital, family) Name a “Person Responsible” (or appoint an Enduring Guardian and lodge forms with Guardianship Administration Board)

34. Further information Type “healthy dying initiative” into your search engine TasAssoc for Hospice & Palliative Care Inc www.tas.palliativecare.org.au jenny.fuller@dhhs.tas.gov.au

35. Discussion questions Do you have an ACD, (or thought about it)? What would you want your family or friends to know about your wishes? Do you have an idea about a SDM?