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Advance care planning

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Title: Advance care planning  
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Subject: Caregiver
Collection: Health Law in the United Kingdom, Health Law in the United States
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Advance care planning

Advance care planning is a process that enables individuals to make plans about their future health care. Advance care plans provide direction to healthcare professionals when a person is not in a position to either make and/or communicate their own healthcare choices. Advance care planning is applicable to adults at all stages of life.[1] Participation in advance care planning has been shown to reduce stress and anxiety for patients and their families, and lead to improvements in end of life care.[2]

The main components of advance care planning include the nomination of a substitute decision maker, and the completion of an advance care directive.


  • Background 1
  • Components 2
    • Substitute decision maker 2.1
    • Advance care directives 2.2
  • References 3


Advance care planning is applicable to all adults in all stages of life.[1] Advance care planning aims to allow people to live well, and when death approaches, die in accordance with their personal values.[3] Advance care planning is only applicable when the individual cannot make and/or communicate decisions about what they want in relation to their healthcare.[4] If advance care planning has occurred, patients who have lost capacity or the ability to communicate or both, are able to continue to have a say in their medical care.[5] This has been shown to improve end of life care, and provide improved outcomes for both patients and their surviving relatives.[2]

While applicable to all stages of life, it is particularly applicable to end-of-life care decision making, since approximately 1 in 4 people lose decision making capacity when approaching the end of their life.[6]

Federal and state legislation in the US,[7] Australia,[8] Canada[9] and the UK [10] supports the right of patients to refuse unwanted medical treatments. People can also express their preferences through written advance directives or by advising their appointed substitute decision maker about their wishes for when they are unable to make or communicate these decisions/wishes themselves.


There are two methods by which the communication of an individual's preferences can be known. These are:

  1. the appointment of a substitute decision maker, and
  2. the completion of an advance care directive or similar document.

Substitute decision maker

A substitute decision maker makes decisions on behalf of an individual only when that individual does not have the capacity to make/communicate decisions for themselves.[11]

There are a number of methods by which a substitute decision maker can be identified. The ideal method is the appointment of a person using a statutory document. In the absence of a statutory document the substitute decision maker may be a "person responsible" as listed in order of authority in legislation.[11]

A substitute decision maker can be chosen by an individual following completion of relevant paperwork, can be assigned to the person by law in the absence of a chosen substitute decision maker (e.g. family member or carer), or can be appointed for the person (e.g. guardian appointed by a guardianship tribunal) .[12]

Substitute decision makers make decisions based on the principles of either substituted judgement or best interests.[1] Substituted judgement is when the substitute decision maker arrives at a decision based on the best approximation of what they believe the person would want. This decision should be informed by both the known wishes of the person and the best available healthcare advice.[13] Best interests decision making requires the substitute decision maker to focus on the patient's best interests.

Many, but not all, jurisdictions have legislation supporting the appointment of a substitute decision maker through a statutory document. They have different names depending on the jurisdiction:

Jurisdiction Substitute Decision Maker Type
Australia Australian Capital Territory Enduring Power of Attorney [14]
New South Wales Enduring Guardian [15]
Northern Territory N/A
Queensland Enduring Power of Attorney [16]
South Australia Medical Power of Attorney [17]
Tasmania Enduring Guardian [18]
Victoria Medical Enduring Power of Attorney [19]
Western Australia Enduring Power of Guardianship [20]
United Kingdom Lasting power of attorney - health and welfare [21]
United States Health care proxy
Canada Newfoundland and Labrador Substitute decision maker [22]
Nova Scotia Delegate Decision maker [23]
New Brunswick Power of Attorney for personal care [24]
Prince Edward Island Health Care Proxy [25]
Quebec Mandatary [26]
Ontario Power of Attorney for Personal Care [27]
Manitoba Health Care Proxy [28]
Saskatchewan Health Care Proxy [29]
Alberta Healthcare Agent [30]
British Columbia Temporary Substitute Decision Maker [31]
Yukon Territory Health Care Proxy [32]
Northwest Territories Health Care Agent [33]
Nunavut N/A

Advance care directives

An advance care directive is a document detailing an individual's health care preferences. This may include personal values and life goals, describe circumstances the person would find unacceptable, identify preferences relating to specific medical interventions, or a combination of these.[1]

Advance care directives may be written on specifically designed forms, but can also take the form of a written letter or statement.[34] Inclusion of a doctor in the completion of an advance care directive will assist in ensuring that an individual's wishes are clear and written in a manner that is easy for substitute decision makers and/or medical staff to interpret and follow them in the future. Having a physician witness the document will reinforce this by showing future medical staff that the document contains information about informed decisions due to the assistance of a physician.[35]


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