Terms and their description
Advance care directive
A type of written advance care plan recognised by common law or specific legislation that is completed and signed by a competent adult. It can record the person’s preferences for future care, and appoint a substitute decision-maker to make decisions about health care and personal life management. In some states, these are known as advance health directives. [1]
Advance care plan
An advance care planning discussion will often result in an advance care plan. Advance care plans state preferences about health and personal care, and preferred health outcomes. They may be made on the person’s behalf, and should be prepared from the person’s perspective to guide decisions about care. [2]
Advance care planning
A process of planning for future health and personal care, whereby the person’s values and preferences are made known so that they can guide decision-making at a future time when the person cannot make or communicate their decisions. Formal advance care planning programs usually operate within a health, institutional or aged care setting after a life-limiting condition has been diagnosed, and frequently require the assistance of trained professionals. However, people can choose to discuss their advance care plans in an informal family setting. [2]
Carer
A person who provides personal care, support and assistance to another individual who needs it because they have a disability, medical condition (including a terminal or chronic illness) or mental illness, or they are frail and aged. An individual is not a carer merely because they are the spouse, de facto partner, parent, child, other relative or guardian of an individual, or live with an individual who requires care. [3]
Dying
The terminal phase of life, where death is imminent and likely to occur within hours or days, or occasionally weeks. This is sometimes referred to as ‘actively dying’.
End of life
The period when a patient is living with, and impaired by, a fatal condition, even if the trajectory is ambiguous or unknown. This period may be years in the case of patients with chronic or malignant disease, or very brief in the case of patients who suffer acute and unexpected illnesses or events, such as sepsis, stroke or trauma. [4]
End-of-life care
Includes physical, spiritual and psychosocial assessment, and care and treatment delivered by health professionals and ancillary staff. It also includes support of families and carers, and care of the patient’s body after their death. People are ‘approaching the end of life’ when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with:
- advanced, progressive, incurable conditions
- general frailty and co-existing conditions that mean that they are expected to die within 12 months
- existing conditions, if they are at risk of dying from a sudden acute crisis in their condition
- life-threatening acute conditions caused by sudden catastrophic events. [4]
Family
Those who are closest to the patient in knowledge, care and affection. This may include the biological family, the family of acquisition (related by marriage or contract), and the family and friends of choice. [5]
Goals of care
The aims for a patient’s medical treatment, as agreed between the patient, family, carers and healthcare team. Goals of care will change over time, particularly as the patient enters the terminal phase. 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. The patient’s goals of care may also include nonmedical goals - for example, returning home or reaching a particular milestone, such as participating in a family event.
Nonbeneficial treatment
Interventions that will not be effective in treating a patient’s medical condition or improving their quality of life. Nonbeneficial treatment may include interventions such as diagnostic tests, medications, artificial hydration and nutrition, intensive care, and medical or surgical procedures. Nonbeneficial treatment is sometimes referred to as futile treatment, but this is not a preferred term.
Palliative care or palliative approach
An approach to treatment that improves the quality of life of patients and their families facing life-limiting illness, through the prevention and relief of suffering. It involves early identification, and impeccable assessment and treatment of pain and other problems (physical, psychosocial and spiritual). [6]
ACFI 12 Complex Health Care includes a complex health care procedure described as "Palliative care program involving End of Life care where ongoing care will involve very intensive clinical nursing and/ or complex pain management in the residential care setting". [7]
Specialist palliative care
Services provided by clinicians who have advanced training in palliative care. The role of specialist palliative care services includes providing direct care to patients with complex palliative care needs, and providing consultation services to support, advise and educate non-specialist clinicians who are providing palliative care.
Substitute decision-maker
A person appointed or identified by law to make substitute decisions on behalf of a person whose decision-making capacity is impaired. Substitute decision-makers have legal authority to make these decisions; the relevant legislation varies between jurisdictions (states and territories). A document that appoints a substitute decision-maker to make health, medical, residential and other personal decisions (but not financial or legal decisions) is considered to be an advance care directive. More than one substitute decision-maker may be appointed under an advance care directive. There are three categories of substitute decision-makers:
- substitute decision-makers chosen by the person (e.g. one or more enduring guardians appointed under a statutory advance care directive, or a nominated substitute decision-maker in a common law advance care directive)
- substitute decision-makers assigned to the person by the law in the absence of an appointed substitute decision-maker (e.g. family member, carer or ‘person responsible’)
- substitute decision-makers appointed for the person (e.g. a guardian appointed by a guardianship tribunal). [2]
Terminal phase
The hours, days or, occasionally, weeks when a patient’s death is imminent. This is sometimes referred to as the period when a patient is actively dying.
Page updated 22 January 2021