Advance care planning means supporting people to think about, and plan for, their wishes as they approach the end of life. Advance care planning encourages people to:
- consider the kind of care that is in keeping with their values, and their wishes about their own life and death
- talk to their health care providers about their concerns about the dying process, to seek information to help them make decisions about their future care, and to review possible scenarios related to their own situation
- talk to their families and/or friends about these matters
- identify a proxy decision-maker
- address other matters to do with their death, such as organ donation, wills, funerals and so on.
Advance care planning is based on the ethical and legal principle of autonomy – that violating patients’ autonomy by disregarding their wishes may constitute a legal offence. In Australia, the legal framework and terminology surrounding advance care planning varies between states. Link to Legislative framework in Australia.
What is known:
Advance care planning:
The overall process of ongoing discussion about, and reflection on, a person’s wishes and values about their care at the end of life.
Advance directive / living will:
Instructions that consent to, or refuse, specific treatments in the future. The directive comes into effect at the time the person is no longer able to make decisions.
Enduring power of attorney / proxy decision-maker / next of kin:
A person may formally appoint an enduring guardian or enduring power of attorney to make medical decisions for them in the event that they cannot make their own decisions at some time in the future. Alternatively, they can simply indicate who they would wish to act as their proxy decision- maker, without making a formal appointment. If there is no information available as to who has been nominated for this task, the treating doctors may discuss treatment decisions with the next of kin or “person responsible” – the legal definition of who can be considered next of kin varies in different states. Click here to link to State Legislation.
Testamentary capacity / legal competence:
Relates to whether or not the patient understood the implications of making a particular treatment choice at the time the decision was made. For some of the more detailed aspects of assessing competence, see also the Fast Fact on Decision-making Capacity from the End of Life / Palliative Education Resource Centre
Implications for practice
Patients require excellent communication to help them make informed decisions which they and their caregivers will feel are right when they are needed. Click here to link to Communication Resources. Advance care plans can and should be regularly reviewed as situations change.
Advance care planning can be
- Formal, using a legally binding advance directive and/or appointing a proxy decision-maker. Arrangements for formal directives vary between states. Click here to link to State Legislation or
- Informal, based on discussions between the patient, their supporters and/or their health carers, that guide future decisions by emphasising the person’s philosophy and values, and their specific concerns.
Formal advance directives have some inherent problems – they can be too specific (but not cover unforeseen circumstances) or too general (making them difficult to interpret).
Palliative care providers need accurate and up to date knowledge of the legal context of end-of life decision making in the State in which they practice. Assessment of patient’s testamentary capacity may be necessary to ensure a legally valid decision. Link to South Australian resource for assessing testamentary capacity
The issues, and the appropriate documentation, may also vary in different settings – home, residential aged care facility, hospital, or in a palliative care inpatient unit. Advance care planning needs to address the different settings in which dying people may find themselves.
Information about a patient’s wishes (whether a formal advance directive or an informal plan) needs to be available in an emergency and at the time of transfer between different settings of care. Ensuring this happens is also part of the care planning process.
Related CareSearch pages
Finding out more
For more information regarding evidence go to the Evidence and Issues page
For resources to assist clinicians go to the Resources for Advance Care Planning page
This page was created on 04 January 2006 and due for review in January 2008. These pages are scheduled for review. This review is pending.