End Of Life Decision-Making

Planning for the end of life can improve end of life care and increase the likelihood that a person’s family, carer and healthcare team can make decisions that they feel confident are in accordance with the person’s preferences and best interests. In Australia, laws relating to advance care planning mechanisms – appointing substitute decision-makers and recognition of advance care directives - can differ greatly between states and territories, and can be confusing processes even within a single jurisdiction. In Victoria, for example, the legal status of advance care directives (beyond the limited Refusal of Treatment certificate) is unclear, and two decision-makers may be appointed by a competent adult (enduring guardian and an agent), each with different powers, governed by different but overlapping pieces of legislation.

Key findings

  • Feedback on our issues paper indicated relatively low awareness and uptake of options for advance care planning.
  • Many contributors acknowledged the importance of advance care planning but said that they had not made any arrangements “yet”.
  • Others were more proactive, seeing advance care planning as an integral part of, or addendum to, making a will.
  • It was noted that conversations about end of life and advance care plans needed to happen a lot earlier than they ordinarily do, because often decisions were being made under pressure, or when a person had lost capacity.
  • Stakeholder feedback suggested changing the terms ‘end of life’ – which may be too direct and confronting for some people – and ‘advance care planning’, which borders on being euphemistic.

Recommendations

    1. Implementation of the recommendations in the Victorian Law Reform Commission’s (VLRC) Guardianship Final Report with regard to documenting wishes about the future, which in general state that there should be a broader statutory right to make an advance care directive, which encompasses future as well as current conditions, and the ability to provide consent and refusal to medical treatments in advance. Such legislation should also clarify the relationship between substitute decision-makers and advance care directives; that is, which takes precedence if the substitute decision maker disagrees with the treatments proposed in the advance care directive. The VLRC recommends that new guardianship legislation should enable a person with capacity to document instructions about future decision-making by:
a. Appointing an enduring power of attorney with instructions; or
b. Appointing an enduring power of attorney with no instructions; or
c. Making a standalone advance care directive.
  1. That there be a voluntary register of advance care directives and substitute decision makers, which can be easily accessed by health professionals, and which would be particularly useful in emergency situations.
  2. That the way we talk about advance care planning in the community ensures the topic is raised sensitively so that people are willing to listen and engage. Part of this will involve developing education tools to improve how health professionals and lawyers talk about death and dying.

Publications:

  • Cameron Stewart ‘Law and cancer at the end of life: The problem of nomoigenic harms and the five desiderata of death law’ (2011) 125 Public Health 905
  • Ben White et al ‘The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment: Part 1 (New South Wales) (2011) 18(4) Journal of law and medicine 498
  • Lindy Willmott et al ‘The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment: Part 2 (Queensland) (2011) 18(4) Journal of law and medicine 523
  • Lindy Willmott et al ‘The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment: Part 3 (Victoria) (2011) 18(4) Journal of law and medicine 773

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