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Terminology

These descriptions provide information on some of the main concepts and approaches relating to specialist palliative care and advance care planning in aged care.

Activities of daily living (ADLs)

A set of activities necessary for daily living that include feeding, personal hygiene, dressing, movement and transferring. [1]

Advance care directive

An Advance Care Directive is a legal document that allows a person to make their future healthcare preferences known if they were to lose their capacity to make decisions. It will only operate when a person no longer has decision-making capacity. The law and forms for Advance Care Directives are different in each state and territory and the terminology used may vary as well (e.g. Advance Directives, Advance Health Directives). [1]

Advance care plan

A plan that states preferences about health and personal care, and preferred health outcomes. An advance care planning discussion will often result in an advance care plan. Plans should be made on the person’s behalf and prepared from the person’s perspective to guide decisions about care. [2]

Advance care planning

The process of preparing for likely scenarios near the end of life that usually includes assessment of, and discussion about, a person’s understanding of their medical condition and prognosis, values, preferences and personal and family resources. Advance care planning supports a person in communicating their wishes about their end of life. [2]

Benchmark

A standard of performance that all services are measured against. [1]

Care plan

A plan that outlines a person’s care needs, the types of services they will receive to meet those needs, who will provide the services and when. It is developed by the person’s service providers in consultation with them as part of the care planning process. [2]

Care planning

The process of identifying a person’s needs and enabling care providers to access this information and work with the person to determine services that best meet their needs. The care planning cycle involves an assessment of the needs of the service user; documentation of those needs; developing strategies/support/treatment to meet those needs; discussing these strategies with the service user; choice of preferred options by the service user in collaboration with the service provider; documentation of the plan of care for each need, and regular review to assess management of the person’s needs. [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 a spouse, de facto partner, parent, child, other relative or guardian of an individual, or live with an individual who requires care. A person is not considered a carer if they are paid, a volunteer for an organisation or caring as part of a training or education program. [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]

The Aged Care Funding Instrument (ACFI) definition for end of life is more specific as follows: ACFI 12 item 14 enables a claim for a palliative care program involving end of life care. For this claim the reference for the definition of end of life is in the Palliative Approach Toolkit for Residential Aged Care Facilities March 2016, Fact Sheet 10 - End of Life (Terminal) Care Pathways (36Kb-PDF).

Family

The term family includes people identified by the person as family and may include people who are biologically related and people who joined the family through marriage or other relationships, as well as the family of choice and friends (including pets). Carers may include family members and other members of their community (such as close friends and neighbours) who the person agrees to being involved in their care. [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 non-medical goals e.g. returning home or reaching a particular milestone, such as participating in a family event.

Non-beneficial treatment

Interventions that will not be effective in treating a patient’s medical condition or improving their quality of life. Non-beneficial treatment may include interventions such as diagnostic tests, medications, artificial hydration and nutrition, intensive care, and medical or surgical procedures. Non-beneficial treatment is sometimes referred to as futile treatment, but this is not a preferred term.

Palliative care

An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. [6] It should be an integral component of all relevant global disease control and health system plans, including those relating to non-communicable diseases and universal health coverage, as well as being included in country and regional cooperation plans. [7] 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". [8]

All health professionals who provide care to people living with a life-limiting illness, their families and carers should have minimum core competencies in the provision of palliative care. PCA refers to this type of care that is provided by other health professionals, including GPs, as ‘palliative care’ (although it is also sometimes known as ‘generalist palliative care’). [5]

Person living with a life-limiting illness

The term life-limiting illness is used to describe illnesses where it is expected that death will be a direct consequence of the specified illness. Such illnesses may include, but are not limited to cancer, heart disease, chronic obstructive pulmonary disease, dementia, heart failure, neurodegenerative disease, chronic liver disease and renal disease. The term person living with a life-limiting illness also incorporates the concept that people are actively living with such illnesses, often for long period of time, not simply dying. [5]

Specialist palliative care

People with more complex needs should be able to access care provided by specialist palliative care services comprising multidisciplinary teams with specialised skills, competencies, experience and training in palliative care. [5]

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]
  • References
  1. National Palliative Care Standards 5TH EDITION 2018, Palliative Care Australia.
  2. The Clinical, Technical and Ethical Principal Committee of the Australian Health Minister’s Advisory Council. A National Framework for Advance Care Directives (2.28MB PDF). Canberra: AHMAC, 2011.
  3. Carer Recognition Act 2010 [Accessed 16 July 2014, at www.comlaw.gov.au/Details/C2010A00123.]
  4. General Medical Council. Treatment and care towards the end of life: good practice in decision making [Internet]. 2017 [cited 2017 May 19].
  5. Palliative Care Australia. Palliative Care Service Development Guidelines (2018) Canberra: Palliative Care Australia, 2018.
  6. World Health Organization. WHO definition of palliative care [Internet]. 2017 [cited 2017 May 19].
  7. World Health Assembly 2014 WHA67.19 - Strengthening of Palliative Care as a Component of Comprehensive Care Throughout the Life Course. WHA Resolution; Sixty-seventh World Health Assembly, 2014 (158kb PDF)
  8. Australian Government Department of Health. Aged Care Funding Instrument (ACFI) User Guide 2017 [Internet]. 2017 [updated 2017 Feb 28; cited 2017 May 22.]

Page updated 10 May 2018