Substitute decision-making for patients with palliative care needs

A patient may nominate a substitute decision-maker to represent them when they no longer have capacity¹ to make decisions about their own health care. When a patient still has decision-making capacity, this person can be appointed through advance care planning or by a statutory health attorney. Healthcare professionals should encourage all patients with a life-limiting illness to consider advance care planning early and not delay itAdvance Care Planning Australia, 2021.

If more than one substitute decision-maker is nominated, the means of decision-making between them should be made clear (eg any one of them, a majority, or all of them are required to make a decision).

If a patient does not nominate a substitute decision-maker when they have decision-making capacity, a substitute decision maker may be identified by a tribunal when the patient no longer has decision-making capacity. Do not assume the patient’s next of kin will automatically become the substitute decision-maker. State-based legislation specifies the hierarchy of persons who can fulfil this role (eg spouse, de facto partner, carer, close friend, relative), and they should be contacted in the order specified in that jurisdiction. Requirements for appointing a substitute decision-maker vary in different states and territories, see the End of Life Law website for information in:

• the Australian Capital Territory
• New South Wales
• the Northern Territory
• Queensland
• South Australia
• Tasmania
• Victoria
• Western Australia

Substitute decision-makers only have a role when a patient is not able to make or communicate their own decisions (see Capacity to make decisions about health care). The substitute decision-maker can convey the patient’s preferences to the healthcare team, and may participate in decision-making on a range of issues. When participating in decision-making, substitute decision-makers must act in the best interests of the patient, and take into account the patient’s preferences (whether officially documented or not) as well as advice from the treating clinicians about the value of the proposed action. Medical information provided to a substitute decision-maker should be limited to that needed to make an informed decision about the proposed action.

If there is disagreement between substitute decision-makers, an independent statutory body known as a guardianship board or tribunal may be called upon to make a decision or provide consent if required; legislation varies among Australian states and territories.