Advance Care Directives in Tasmania Part of the Healthy Dying Initiative

1. Advance Care Directives in Tasmania Part of the Healthy Dying Initiative A slide presentation for community use.

2. Modern trends at the end of life • Demographic – people living longer • Technical – medicine can do so much more • Professionalism – specialists needed for ‘care’, & attention to people’s wishes • Religious/spiritual – less connection to traditional church-based supports • Social – individualism, social mobility, changing nature of community, multiculturalism

3. Pathways to death are changing • Living longer, but taking longer to die • Up to 2 years at the end of life with: • Physical deterioration & disability • Increasing symptom burden • Dependence • More with dementia • More decision points for care

4. Changes in our attitudes are occurring • More & more people have experience of a ‘bad death’ • Greater interest in end-of-life decision-making & discussion of ‘living wills’ • Questions about euthanasia and greater control at the end of life • A trend across the Western world

5. Attitudinal barriers to dealing with death • Cannot initiate talk of death as patients and families do not want this and 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 and prolong life otherwise you are causing death (“you can never give up on a patient”). • Belief that use of opioids and sedatives in palliative care can contribute to the cause of death

6. Terminology • Advance Care Planning (ACP) - a process of discussion between a patient, the patient's family, and health care professionals about the goals and desired direction of the patient's end-of-life care. • Advance Care Directive (ACD) – a document that conveys a person’s directions for their end-of-life care, for a time when they can no longer make decisions for themselves. • Substitute Decision Maker (SDM) • Person Responsible & Enduring Guardian(Tasmania) • Person Concerned

7. Advance Care Directives – the common law basics • Every person with the capacity to decide for themselves has the right to refuse treatment (to not give consent) • If they can understand what they are told, make an informed choice, and communicate this to others, they must be asked to decide for themselves. • An ACD will only become active if the Person Concerned can’t understand or communicate (has ‘lost capacity’). • Every effort must be made to use the capacity they still have, or any relevant information such as a valid ACD.

8. Advance Care Directive - general ‘Valid’ ACD – completed while person had capacity, not coerced or influenced, witnessed, & applicable to the current situation. Focus on • Values, wishes & beliefs • Acceptable outcomes rather than specific medical treatments • End-of-life decisions • Can include broader care issues (location etc) • May name a substitute decision maker

9. Advance Care Directive – what it won’t do • Is NOT concerned with financial matters (see Enduring Power of Attorney) • Is NOT like a will (because it operates before you die) • Will not necessarily prevent emergency treatment by paramedics (because they have little choice, if called) • Doesn’t mean that the expert opinion of doctors is irrelevant (because the process of advance care planning blends their judgement with the patient’s wishes)

10. ACDs are part of Healthy Dying (1) In the community: • More opportunities for discussion with GP, family & friends about death, and about particular deaths: yours and mine • Documenting of wishes and values for end-of-life in a standard Advance Care Directive form (ACD) • Appointment of ‘substitute decision maker’ (= Enduring Guardian, or ‘Person Responsible’)

11. ACDs are part of Healthy Dying (2) In the Residential Aged Care Facility: • Increasingly, people will arrive with an ACD • New arrivals to fill one in • Clear wishes may prevent unnecessary transfers to hospital for dying residents • Importance of having SDM nominated and AVAILABLE

12. ACDs are part of Healthy Dying (3) In the hospital: • Assessment of Goals of Care for this patient depending on their history & condition • Increasingly, patients will have an ACD that must be taken into consideration • Goals of Care plan can be endorsed for use in the community; eg, assists paramedics, Residential Aged Care Facility, GP.

13. ACDs in Tasmania • ACDs have common law status in Tasmania. There is now Australian case law confirming that they should be respected • The underlying right is the right of every competent adult to make decisions for themselves • So, every competent adult can refuse medical treatment • This is not regarded as suicide (the disease is regarded as the cause of death) • Similarly, the doctor who agrees to withdraw treatment is not assisting a suicide

14. ACDs in Tasmania now • An ACD can be written in any form, or may be verbal. Many different versions exist, but this can be a problem for interpretation • A standard Tasmanian ACD now exists. It replaces the ‘Statement of Wishes’ made available through the Respecting Patient Choices (RPC) pilot program at RHH • More information, & the ACD form, from DHHS palliative care site: http://www.dhhs.tas.gov.au/palliative_care • RPC has now ended in Tasmania

15. Hospital (& Nursing Home): Goals of Care Plan • Tool for discussing option of treatment limitations with patients and families • Replaces NFR (Not For Resuscitation) order, which was too simplistic & widely misunderstood • Clear documentation for decision-making • Improve reach outside of hospital for Palliative and Terminal care

16. Goals of Care in Community Settings • Palliative Goals • helps plan ahead for any foreseeable emergencies (eg fracture, UTI, pain and symptom management) • Terminal Goals • Ensures that appropriate medications available when needed, and that family and staff understand death is imminent and hospital transfer undesirable

17. Person Responsible (1) • Substitute Decision Maker nominated by the Person Concerned OR • May be an approved person under Guardianship & Administration Act 1995, either (order of priority) • EG • Spouse • Unpaid carer • Other person with best interests at heart. • NB – officially no ‘next-of-kin’ any more

18. Person Responsible (2) • Health care professionals may follow GA Act to determine who is right person to make decisions on behalf of patient who lacks capacity and who has not nominated someone themselves • Person Responsible can be encouraged to complete an ACD for the person concerned if necessary/wished. • The last resort, in the event of unresolvable conflict, is to ask the Public Guardian to appoint a temporary Guardian.

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