Glossary

Clarity and agreement are lacking about the meaning of many terms that are commonly used in relation to end-of-life care. It is important for all those involved in providing end-of-life care to have a common understanding of what such terms mean in practice. Below is a list of some common terms and their meanings.

Terms and their description

  • Acute healthcare facility1
    A hospital or other healthcare facility providing healthcare services to patients for short periods of acute illness, injury or recovery. 
     
  • Advance care directive1 
    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. 
     
  • Advance care plan2
    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.
     
  • Advance care planning2
    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. 
     
  • Carer3
    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. 
     
  • Clinician1
    A healthcare provider, trained as a health professional. Clinicians include registered and nonregistered practitioners, or members of a team of health professionals providing health care who spend the majority of their time providing direct clinical care. 
     
  • 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 life4
    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. 
     
  • End-of-life care4
    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.
       
  •  Family5
     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.
     
  • 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.
     
  • Interdisciplinary team4
    A team of providers who work together to develop and implement a plan of care. Membership depends on the services required to identify and address the expectations and needs of the patient, carers and family. An interdisciplinary team might typically include one or more doctors, nurses, social workers, spiritual advisers, pharmacists and personal care workers. Other disciplines may be part of the team, depending on the needs of the patient and the resources available. Hospital volunteers, patients, carers and family members may also be considered as part of the interdisciplinary team.
     
  • Limitations of medical treatment
    Medical decisions that may be made to limit the treatments that are, or could be, provided when they will not benefit the patient. A decision to not attempt cardiopulmonary resuscitation if a patient suffers a cardiopulmonary arrest is one example of a limitation of medical treatment. Similar terms that are in common use include withdrawal or withholding of medical treatment. Decisions to limit medical treatment may avoid prolongation of dying but will not cause a patient’s death. This is quite different from the practice of euthanasia, where death is deliberately and purposefully hastened.
     
  • 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 care6 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). 
     
  • Patient 
    The primary recipient of care. 
     
  • Resuscitation orders/ plans 
    Documents completed by a doctor to outline the plan of care in relation to emergency treatment of severe clinical deterioration. Not for resuscitation (NFR) and do not attempt resuscitation (DNAR) orders relate solely and specifically to decisions to not perform cardiopulmonary resuscitation if the patient has a cardiac or respiratory arrest. In some organisations, decisions about other specific limitations of medical treatment may also be listed as part of a resuscitation plan (e.g. decisions to call a medical emergency team or transfer a patient to intensive care if they deteriorate). 
     
  • 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 nonspecialist clinicians who are providing palliative care.
     
  • Substitute decision- maker7 
    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).
       
  • 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. 
 

References

  1. Australian Commission on Safety and Quality in Health Care. National Safety and Quality Health Service Standards Sydney: ACSQHC, 2011.
  2. Working Group of the Clinical Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council. A national framework for advance care directives. Adelaide: Australian Health Ministers’ Advisory Council, 2011.
  3. Carer Recognition Act 2010 (Accessed 16 July 2014, at www.comlaw.gov.au/Details/C2010A00123.) National Consensus Statement: essential elements for safe and high-quality end-of-life care 33
  4. General Medical Council. Treatment and care towards the end of life: good practice in decision making. (Accessed 16 July 2014, at www.gmcuk.org/guidance/ethical_guidance/end_of_life_care.asp.)
  5. Palliative Care Australia. Palliative care: glossary of terms. Canberra: Palliative Care Australia, 2008. 34 National Consensus Statement: essential elements for safe and high-quality end-of-life care
  6. World Health Organization. WHO definition of palliative care. (Accessed 16 July 2014, at www.who.int/cancer/palliative/definition/en.) National Consensus Statement: essential elements for safe and high-quality end-of-life care 35 Term Description
  7. Working Group of the Clinical Technical and Ethical Principal Committee of the Australian Health Ministers’ Advisory Council.  A national framework for advance care directives. Adelaide: Australian Health Ministers’ Advisory Council, 2011.

These terms have been reproduced from the National Consensus Statement: essential elements for safe and high-quality end-of-life care with permission from the Australian Commission on Safety and Quality in Health Care, (2015), ACSQHC, Sydney.

Last updated 06 November 2017