Terminal Care
X
GO

Terminal Care

Key Messages

  • The terms 'end-of-life' (EoL) and 'terminal' are used variably. [1] In different settings and circumstances, both have been used to describe the period of the last few days to last few months of life when a person is irreversibly dying. [1-3]
  • Recognising that death is imminent is difficult but important as it can allow a dying person, their family and carers to adjust priorities, achieve certain goals, and plan appropriate end-of-life care. [1,3]
  • Increasingly, older people are living longer and with multiple chronic illnesses. [1,4] Comorbidities and frailty make prognostics difficult but highlight the importance of care planning well in advance of the terminal phase. [1,3,4]
  • Best practice in end-of-life care focuses on supporting the person, their family and carers. [1,3] It includes the timely provision of information; a review of the person's wishes and goals of care; the provision of comfort through the management of physical, emotional and cognitive symptoms; and addressing spirituality, grief and bereavement. [1,3] Appropriate end-of-life care may include consideration of a preferred place of care and preferred place of death; these may not be the same. [3]
  • An end-of-life care pathway can be used to guide care but requires support from management and staff education. [5,6]
  • Physical problems to be anticipated and proactively addressed include pain, delirium / agitation, respiratory difficulties, mouth and skin care, bladder and bowel care, and nausea and vomiting. [3,7]
  • Quality communication is essential for providing and experiencing care at EoL and may have a positive influence on bereavement. [1,3] Quality communication is the focus of the concepts of death preparedness, [1,8] a good death [9] and culturally appropriate end-of-life care. [10]
  • Non-beneficial treatments (NBT), particularly those that compromise the comfort of a dying person, should be avoided or ceased whenever possible. [3,6,8,11]

Background

The following information relates to the care requirements for the last few days to weeks of life. The language used to describe this phase of life can be variable. [1-4,7] Management of the last days of life can be supported by discussions that have occurred previously. [6]

Many diseases have a natural history of progression and exacerbations that make the transition to the terminal phase difficult to identify. [6] The Australian Commission on Safety and Quality in Health Care defines dying as 'the terminal phase of life, where death is imminent and likely to occur within hours or days, or occasionally weeks.' [12] (p.32) The term dying is also used interchangeably with ‘terminal phase’ or ‘actively dying’.

Evidence Summary

The last weeks of life present numerous challenges for both healthcare professionals and informal carers. Previously managed symptoms may change, new symptoms may develop, and signs of impending death often present. As death approaches, symptom management can be complicated by the patient’s declining ability to communicate. [13] Although difficult to predict with precision, recognising and accepting that a person's death is approaching are important clinically to allow the person, family, carers, and the care team to prepare. [6,13-17]

Best practice in end-of-life care focuses on supporting both the person and their family and carers. [1,3] Such care includes a review of the person's wishes and goals of care; the proactive management of physical symptoms, emotional and cognitive symptoms, and spiritual needs; and the ceasing of non-beneficial treatments and investigations. [1,3,5,6]

Appropriate end-of-life care may include consideration of a preferred place of care and preferred place of death; these may not be the same. [3] A person’s preferred place of care and preferred place of death may change over time. [12,18] The physical environment of care is important to older people and their families. [19] Privacy as needed is important, as is proximity (physically and emotionally) to loved ones, to home and to nature. Cleanliness, homeliness, and accessibility are also valued. [19]

Physical problems to be anticipated and proactively addressed include pain, delirium/agitation, respiratory difficulties, mouth and skin care, bladder and bowel care, and nausea and vomiting. [3]

Quality communication is essential for providing and experiencing care at EoL and may have a positive influence on bereavement. [1,3] Quality communication is the focus of the concepts of death preparedness, [1,8] a good death [9] and culturally appropriate end-of-life care. [10]

Sensitive and timely communication is essential as many people fear the dying process and do not know what to expect. [7,9,15-17] Anticipation and planning for the management of new or worsening symptoms is important for older people receiving end-of-life care in the community and in residential aged care. [3,6,12,13,15,16,20] This includes anticipatory prescribing. [6]

Frailty presents with a diverse range of signs and symptoms and uncertainty in terms of future health. The majority of frail older adults die with complex interacting chronic medical illnesses and symptoms. [4] Early attention in planning for end-of-life should be given to frail older adults. [4,6]

Acknowledging and openly discussing the possible course of an illness with the dying person and can help him/her to understand how they may die and to make appropriate plans. [7,8] It can be very beneficial for family to be involved in these discussions. “Death preparedness” [1,8] is associated with improved quality of death and dignity, care consistent with a person’s wishes and greater support for carers and surrogate decision-makers. [8] These processes and benefits link to the concept of a "good death". [9]

Cultural norms are central to how individuals approach life, EoL, and death. [10,21,22] For older adults of cultural and linguistically diverse (CALD) groups, EoL preferences are influenced by specific cultural values and traditions that may contribute to misconceptions of their preferences in health care settings. [10,21,22] Guidance is available for end-of-life care of Aboriginal and Torres Strait Islanders. [10,21]

Integrated care pathways for the last days of life detail the essential elements of multidisciplinary care to manage a specific clinical problem and ensure that the best available evidence is systematically integrated into care delivery while providing a framework for auditing and benchmarking care. [6] The Residential Aged Care End of Life Care Pathway (RAC EoLCP) guides the provision of good quality end-of-life (terminal) care in residential aged care. [5] Developed in Australia, RAC EoLCP incorporates evidence-based best-practice clinical management and care coordination for dying residents.

The palliAGED Symptoms and Medicines can help to guide evidence-based practice in the care of older people in the last days of their life (terminal phase). The palliAGED apps for doctors and nurses also support terminal care.

Quality Statement

The quality of the evidence is acceptable to high. Certain reviews [10,11,18,19,22] guidelines [3] and clinical guidance [5,6] are specific to end-of-life care of older people.
 

Page updated 02 July 2021
 

  • References

  • About PubMed Search

  1. Chan RJ, Webster J, Bowers A. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database Syst Rev. 2016 Feb 12;2:CD008006. doi: 10.1002/14651858.CD008006.pub4.
  2. Masso M, Allingham SF, Banfield M, Johnson CE, Pidgeon T, Yates P, et al. Palliative Care Phase: inter-rater reliability and acceptability in a national study. Palliat Med. 2015 Jan;29(1):22-30. doi: 10.1177/0269216314551814. Epub 2014 Sep 23.
  3. Guidelines and Audit Implementation Network. Guidelines for Palliative and End of Life Care in Nursing Homes and Residential Care Homes (1.11MB pdf). Ireland: 2013.
  4. Moorhouse P, Koller K, Mallery L. End of Life Care in Frailty. In: Theou O, Rockwood K, editors. Frailty in Aging. Biological, Clinical and Social Implications. Interdiscipl Top Gerontol Geriatr. Basel: Karger; 2015. vol 41; p.151-60.
  5. Brisbane South Palliative Care Collaborative (BSPCC). Residential aged care end of life care pathway. Brisbane: Queensland Government; 2019 [updated 2020 Oct 16; cited 2021 Jul 2].
  6. Royal Australian College of General Practitioners (RACGP). RACGP aged care clinical guide (Silver Book). Melbourne: RACGP; 2019 [updated 2019 Sep 5; cited 2021 Jul 2].
  7. Bloomer MJ, Moss C, Cross WM. End-of-life care in acute hospitals: an integrative literature review. J Nurs Healthc Chronic Illn. 2011 Aug 15;3(3):165-73.
  8. McLeod-Sordjan R. Death preparedness: A concept analysis. J Adv Nurs. 2014 May;70(5):1008-19. doi: 10.1111/jan.12252. Epub 2013 Sep 15.
  9. Tenzek KE, Depner R. Still Searching: A Meta-Synthesis of a Good Death from the Bereaved Family Member Perspective. Behav Sci (Basel). 2017 Apr 25;7(2). pii: E25. doi: 10.3390/bs7020025.
  10. Brooke NJ. Needs of Aboriginal and Torres Strait Islander clients residing in Australian residential aged-care facilities. Aust J Rural Health. 2011 Aug;19(4):166-70. doi: 10.1111/j.1440-1584.2011.01207.x.
  11. Cardona-Morrell M, Kim J, Turner RM, Anstey M, Mitchell IA, Hillman K. Non-beneficial treatments in hospital at the end of life: a systematic review on extent of the problem. Int J Qual Health Care. 2016 Sep;28(4):456-69. doi: 10.1093/intqhc/mzw060. Epub 2016 Jun 27.
  12. Australian Commission on Safety and Quality in Health Care (ACSQHC). National Consensus Statement; essential elements for safe and high quality end-of-life care. Sydney: ACSQHC; 2015.
  13. Kehl KA, Kowalkowski JA. A systematic review of the prevalence of signs of impending death and symptoms in the last 2 weeks of life. Am J Hosp Palliat Care. 2013 Sep;30(6):601-16. doi: 10.1177/1049909112468222. Epub 2012 Dec 12.
  14. National Institute for Health and Care Excellence (NICE). End of life care for adults. NICE quality standard 13. 2011 [updated 2017 Mar 7; cited 2021 Jul 2].
  15. National Institute for Health and Care Excellence (NICE). Care of dying adults in the last days of life. NICE guideline 31. 2015.
  16. Registered Nurses’ Association of Ontario (RNAO). End-of-life Care During the Last Days and Hours. Toronto (ON): RNAO; 2011.
  17. Palliative care Expert Group. Therapeutic guidelines: palliative care. Version 4. Melbourne: Therapeutic Guidelines Limited; 2016.
  18. Costa V, Earle CC, Esplen MJ, Fowler R, Goldman R, Grossman D, et al. The determinants of home and nursing home death: a systematic review and meta-analysis. BMC Palliat Care. 2016 Jan 20;15:8. doi: 10.1186/s12904-016-0077-8.
  19. Brereton L, Gardiner C, Gott M, Ingleton C, Barnes S, Carroll C. The hospital environment for end of life care of older adults and their families: An integrative review. J Adv Nurs. 2012 May;68(5):981-93. doi: 10.1111/j.1365-2648.2011.05900.x. Epub 2011 Dec 29.
  20. Kennedy C, Brooks-Young P, Brunton Gray C, Larkin P, Connolly M, Wilde-Larsson B, et al. Diagnosing dying: an integrative literature review. BMJ Support Palliat Care. 2014 Sep;4(3):263-70. doi: 10.1136/bmjspcare-2013-000621. Epub 2014 Apr 29.
  21. PEPA Project Team. Cultural considerations: Providing end of life care for Aboriginal peoples and Torres Strait Islander peoples. Barton ACT: Commonwealth of Australia; 2014.
  22. Rahemi Z, Williams CL. Older Adults of Underrepresented Populations and Their End-of-Life Preferences: An Integrative Review. ANS Adv Nurs Sci. 2016 Oct/Dec;39(4):E1-E29.

Definition

End-of-Life Care: Care provided during the final hours, days or weeks of a progressive illness, i.e. the 'terminal phase', or the period of irreversible decline in functional status prior to death (Source: Oxford Textbook of Palliative Medicine, 4th ed.)
 

Search strategy

(dying[tw] OR death[tw] OR end of life[tw]) AND (imminen*[tw] OR nearing[tw] OR last day*[tw] OR last week[tw] OR last hour*[tw] OR final day*[tw] OR final week[tw] OR final hour*[tw] OR critical pathway*[tw] OR terminal phase[tw])