Healthy Dying Improving end-of-life care for all Tasmanians Bruce Wilson

1. Healthy Dying Improving end-of-life care for all Tasmanians Bruce Wilson Network Development Coordinator – Palliative Care

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. Healthy Dying ethos Death is inevitable consequence of having life Dying days are as valuable as non-dying If cure, remission or restoration not possible, responsibility to provide palliation Care focussed on needs & wishes of patient Acknowledge relationships – impact of EoL experience for bereaved

4. Do Tasmanians have good deaths? The majority of people would like to die at home 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 compared to national Australian and UK figures

5. Do Tasmanians have good deaths? However, there is a major mismatch between people’s preferences for where they should die and their actual place of death. One obvious reason is that people’s preferences are unknown Only around one third of the general public had discussed death and dying with anyone (UK data. No comparable data for Australia) Many patients don’t receive excellent care. 54% of complaints in acute hospitals relate to care of the dying/bereavement (UK data)

6. Cultural barriers to dealing with death Demographic: large life expectancy increases. Technical: medicine can do so much more. Professionalism: death and dying, grief and loss seen as being in the province of specialists. Religious/spiritual: traditional denominational church-based structures in decline. Social: individualism, social mobility, changing nature of community, multiculturalism.

7. Attitudinal barriers to dealing with death – persistent myths You 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”). Use of opioids and sedatives in palliative care can contribute to the cause of death

8. How will Healthy Dying work? 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, ‘person responsible’)

9. How will Healthy Dying work? 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.

10. Goals of Care (Modes or Phases) Curative (‘beating it’) Cure or durable remission Prognosis: years Palliative (‘living with disease, anticipating death’) Disease incurable and progressive Prognosis: weeks, months (but can be years) Terminal (‘dying very soon’) Death imminent Prognosis: hours or days

11. ACDs in Tasmania ACDs have common law status in Tasmania, and there is now Australian case law confirming that they should be respected The underlying right is that of every competent adult to make decisions for themselves (‘respect for autonomy’) By extension, every competent adult can refuse medical treatment Legally, this is not regarded as suicide Similarly, the doctor who agrees to withdraw treatment is not assisting a suicide

12. ACDs in Tasmania 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 has been developed. It replaces the ‘Statement of Wishes’ made available through the Respecting Patient Choices (RPC) pilot program at RHH RPC has now ended in Tasmania

13. A statewide Healthy Dying project (1) In order to achieve lasting healthy change in the way our state deals with death and the process of dying, a whole of government and whole of community approach is required. The major aims are: Permanent implementation of pilot instruments State-wide consistency. Sustainable staff capacity for advance care planning

14. A statewide Healthy Dying project (2) - key tasks Promoting palliative care, and death awareness Promotion of advance care planning Formulation of clinical and other policies and guidelines of relevance Improvement of discharge and transfer planning Oversight of rolling education program Review of out of hours and emergency care/episodes Identification of barriers to home care and home death

15. Hospital staff General Practice Clinical Networks Public Health Chaplaincy Pharmacy Nursing Homes University of Tasmania Wicking Centre Grief Counsellors Guardianship and Administration Board (GAB) Coronial services Volunteers Tasmanian Association for Hospice and Palliative Care (TAHPC) Relevant peak community bodies Churches Service clubs Funeral directors? A statewide Healthy Dying project (3)- key stakeholders