Role of law in end-of-life decision-making: perspectives of patients, substitute decision-makers and families

What is known?

The law supports patient’s health-related decisions, including at the end of their life when decisions relating to treatment and pain management are particularly important.

To ensure the wishes of terminally ill patients are respected, it is essential that the law is well understood by those it may affect. If terminally ill patients or their families are unaware of their legal rights, they may be less able to advocate for themselves if they feel their wishes are not met.

What is new?

This study examined the extent to which a sample of community members in Victoria, NSW and Queensland understand the law related to end-of-life decision making.

The role of the law in end-of-life decision making was not clearly understood by most respondents, with many solely reliant on doctors’ guidance. Although law generally did not play a role in decision making, respondents felt supported by the law, particularly in relation to documenting their health care wishes in advance or in appointing a substitute decision maker if necessary.

The law was considered by respondents to be more relevant in cases where significant conflict had occurred. In the experience of some respondents, conflicts may have been avoided had all parties some prior knowledge of the role of law at end of life.

What does this mean?

Community education and that of healthcare workers in the role played by the law in end-of-life decision making is essential to ensure that the wishes of patients are respected and acted on. Education will empower terminally ill patients and their families to understand their rights and to know where to access legal information in the event of conflict.

Contact: Joanne Aitken

Reference: Willmott L, White B, Feeney R, Tilse C, Wilson J, Aitken JF. Role of law in end-of-life decision-making: perspectives of patients, substitute decision-makers and families. Journal of Law and Medicine. 2021; 28:813-830.

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