Medicolegal aspects of end-of-life care - proxy decision makers

Definition

A proxy/substitute decision-maker makes medical decisions on behalf of a patient who has lost capacity, following either the patient's own previously expressed wishes (substituted judgement) or, where these are unknown, the patient's best interests
Becomes relevant in the substantial proportion of end-of-life decisions where the patient has lost capacity by the time a significant decision needs to be made - underscoring the value of advance care planning before this point

The legal hierarchy/identification of who holds proxy decision-making authority varies by jurisdiction, but generally follows a structured order: a person appointed by the patient while they had capacity (enduring guardian/attorney for medical decisions), then a statutory hierarchy of relatives/close others if no appointment was made, and ultimately a tribunal-appointed guardian if no suitable person is identified or there is significant family conflict

The proxy's role is to represent the patient's own wishes and values (substituted judgement) wherever these are known or can be reasonably inferred, not simply to state what the proxy themselves would choose in the patient's situation
Where the patient's wishes are genuinely unknown, decisions fall back to a best interests standard, weighing burdens and benefits of the proposed treatment as objectively as possible

Clarify early who the legally appropriate proxy decision-maker is, particularly in complex family situations, rather than assuming the most vocal or most present family member automatically holds this role
Support the proxy in understanding their role is to represent the patient's wishes, not their own preferences - explicit clarification of this distinction can reduce family distress and guilt during a difficult decision

Advance care directives (which take precedence over a proxy's contrary view where validly applicable), guardianship, capacity assessment, family conflict in end-of-life decision-making

Family members are sometimes surprised or relieved to learn their role is to represent what the patient would have wanted, not to personally decide whether the patient lives or dies - clarifying this substituted-judgement framing explicitly can meaningfully reduce the emotional burden of the proxy role

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