Glossary of advance care planning terms

Advance Care Directives is a catch-all term to refer to the instruments which are recognised in each Australian jurisdiction under advance care directive legislation or common law.

They are voluntary, person-led documents completed and signed by a competent person that focus on an individual’s values and preferences for future care decisions, including their preferred outcomes and care.

They come into effect when an individual loses decision-making capacity. Advance Care Directives can also appoint substitute decision-makers who can make decisions about health or personal care on the individual’s behalf. Advance Care Directives are focused on the future care of a person, not on the management of his or her assets.

Advance Care Directives are recognised by specific legislation (statutory) or under common law (non-statutory).

• Common law (non-statutory) Advance Care Directive: a structured document that is completed and signed by a competent adult and that is not a legislated statutory document. In Western Australia, this includes the Values and Preferences Form: Planning for my future care.
• Statutory Advance Care Directive: a signed document that complies with the requirements set out by a jurisdiction’s legislation. In Western Australia, this includes an Advance Health Directive and Enduring Power of Guardianship which comply with the Guardianship and Administration Act 1990.

Documents that capture a person’s beliefs, values and preferences in relation to future care decisions, but which do not meet the requirements for statutory or common law recognition due to the person’s lack of competency, insufficient decision-making capacity or lack of formalities (such as inadequate person identification, signature and date).

An Advance Care Plan for a non-competent person is often very helpful in providing information for substitute decision-makers and health practitioners and may guide care decisions but are not legally binding.

An Advance Care Plan may be oral or written, with written being preferred. A substitute decision-maker (i.e. EPG) named in an Advance Care Plan is not a statutory appointment. 

A voluntary process of planning for future health and personal care whereby the person’s values, beliefs and preferences are made known to guide decision-making at a future time when that person cannot make or communicate their decisions. 

A catch all term to include documents that result from advance care planning. This includes Advance Health Directives, Values and Preferences Form and Enduring Power of Guardianship. 

An Advance Health Directive (AHD) is a voluntary, person-led legal document completed by an adult with full legal capacity that focuses on an individual’s values and preferences for future care decisions, including their preferred outcomes and care.

It specifies the treatment(s) for which consent is provided or refused under specific circumstances and only comes into effect if the person becomes incapable of communicating their wishes.

The term 'treatment' includes medical, surgical and dental treatments, including palliative care and life-sustaining measures.

An AHD would come into effect only if it applied to the treatment a person required and only if the person was unable to make reasoned judgements about a treatment decision at the time that the treatment was required. An AHD is one of the types of Advance Care Directives available in WA.

Artificial feeding is provided when a person is unable to eat. It involves the administration of nutrition through a feeding tube which may be passed into the stomach from the nose or directly into the stomach through the abdominal wall.

The ability to make a decision for oneself.

Decision-making capacity can be assessed by trained professionals, and its assessment depends on the type and complexity of the decision to be made.

Capacity assessment does not assess whether the decision is considered “good” or “bad” by others such as health practitioners or family, but rather considers the person’s ability to make a decision and comprehend its implications.

Generally, when a person has capacity to make a particular decision they can do all of the following:

• understand and believe the facts involved in making the decision
• understand the main choices
• weigh up the consequences of the choices
• understand how the consequences affect them
• make their decision freely and voluntarily
• communicate their decision.

By default, people are assumed to have capacity, unless there is evidence to the contrary.

Full legal capacity refers to the capacity to make a formal agreement and to understand the implications of statements contained in that agreement. 

An instruction or directive completed and signed by a competent adult and that is not considered a legislated statutory document as it does not comply with the requirements set out in the Guardianship and Administration Act 1990, and is therefore recognised instead by common law. 

A photocopy of a properly witnessed document (e.g. an Advance Health Directive) which has been certified as a direct copy of the original document by an authorised witness.

Competency is a legal term used to describe the mental ability required for an adult to perform a specific task. Competency is recognised in legislation and in common law as a requirement for completing a legal document that prescribes future actions and decisions, such as a will or an Advance Health Directive.

A person is deemed to be either competent or not competent – there are no shades of grey. Competency must be assumed unless there is evidence to suggest otherwise.

End-of-life is the time-frame during which a person lives with, and is impaired by, a life-limiting/ fatal condition, even if the prognosis is ambiguous or unknown. Those approaching end-of-life will be considered likely to die during the next 12 months.

Care needed for people who are likely to die in the next 12 months due to progressive, advanced or incurable illness, frailty or old age.

An Enduring Power of Attorney is a legal agreement that enables a person to appoint a trusted person – or people – to make financial and property decisions on their behalf. An enduring power of attorney is an agreement made by choice that can be executed by anyone over the age of 18, with capacity. 

An Enduring Power of Guardianship is a legal document in which a person nominates an Enduring Guardian to make personal, lifestyle and treatment decisions on their behalf in the event that they are unable to make reasonable judgements about these matters in the future. An EPG is different from an Enduring Power of Attorney (EPA), which relates to financial and property matters.

General Practitioners - Australia's family doctors - are specialists in their own right. A GP is trained to treat the whole person and to care for people of all ages, all walks of life, and with all types of medical issues and concerns.

Clinical and other goals for a patient’s episode of care that are determined in the context of a shared decision-making process.

Goals of care may change over time, particularly as the patient enters the terminal phase and during end-of-life care.

Medical goals of care may include attempted cure of a reversible condition, a trial of treatment to assess reversibility of a condition, treatment of deteriorating symptoms, or the primary aim of ensuring comfort for a dying patient.

Non-medical goals of care articulated by the person may include returning home or reaching a milestone, such as participating in a family event.

Goals of care documents are different to Advance Health Directives. Goals of care are completed by medical practitioners but should align with the preferred health outcomes and treatment decisions made by the individual (to the capacity they have to participate in shared decision-making). The person may or may not have previously completed an Advance Health Directive. Where an Advance Health Directive has been completed, and the individual no longer has decision-making capacity, the goals of care should reflect the Advance Health Directive and should include a discussion with the person’s substitute decision-maker.

A person appointed by the State Administrative Tribunal (SAT) to act on a person’s behalf. The SAT determines which powers the guardian may exercise on a person’s behalf.

Health care can include medical treatment, life-sustaining treatment, surgery, mental health treatment, medications, dental treatment, maternity care, emergency care, nursing care, podiatry, physiotherapy, optometry, psychological therapy, Aboriginal health care, occupational therapy, and other services provided by registered health practitioners such as traditional Chinese medicine.

Any registered professional who practises a discipline or profession in the health area that involves the application of a body of learning, including a person belonging to a profession specifically defined by legislation.

Medical processes used when a person is unable to breathe for themselves. Intubation is the passage of a tube (usually through a person’s mouth) into their lungs. Ventilation is the act of passing air through the tube. 

People who identify themselves as lesbian, gay, bisexual, transgender, intersex, queer/ questioning, asexual and/or other diverse sexual orientations and gender identities.

A life limiting condition is a disease, condition or injury that is likely to result in death, but not restricted to the terminal stage when death is imminent.

Any medical, surgical or nursing procedure that replaces a vital bodily function that is incapable of working independently. Includes assisted ventilation and cardiopulmonary resuscitation. 

Research conducted with or about individuals, or their data or tissue, in the field of medicine or health, and includes an activity undertaken for the purposes of that research.

Any medicine given with the purpose of reducing pain. Pain medication may be given via a variety of means including by mouth, injection or through a patch applied to the skin. 

An approach that improves the quality of life of a person with a life-limiting illness or condition and their family members or carers through the prevention and relief of suffering. Palliative care recognises the person and the importance and uniqueness of their family or carer. It considers physical, social, financial, emotional and spiritual factors that can influence the experience and outcomes of having a life-limiting illness.

A statutory officer appointed under the Guardianship and Administration Act 1990 to protect and promote the rights of adults with a decision-making disability.

An illness or condition that is likely to result in death. The terminal phase of a terminal illness means the phase of the illness reached when there is no real prospect of recovery or remission of symptoms (on either a permanent or temporary basis). 

Any medical, surgical or dental treatment or other health care, including a life sustaining measure or palliative care. 

A decision to consent or refuse consent to the commencement or continuation of any treatment of the person. 

Urgent treatment means treatment urgently needed by a patient:

• to save the patient’s life
• to prevent serious damage to the patient’s health
• to prevent the patient from suffering or continuing to suffer significant pain or distress.