End-of-Life Care in Different Settings

Arrangements for care will vary according to where the dying person is being cared for. Practicalities can be very different in rural or remote areas compared with an urban environment. [1] Clinicians need to adapt their practice to the realities of the care that is able to be provided, and to the skill and coping abilities of the caregivers. [2] This is true whether the person is dying at home, in a nursing home, or in an acute care setting.

Within the healthcare system the culture of care differs in different settings. For instance, healthcare teams in an intensive care unit or an emergency department may have different perceptions of the issues of comfort, and the role of the family, from those of staff in residential aged care, or a surgical unit, and in a palliative care unit or an oncology ward. [3] These differences can have a significant impact on patients’ and families’ experiences of end-of-life care.

End-of-life care pathways are clinical pathways that were initially developed in the UK and more recently are being used in other countries including Australia. They are intended to guide the care of dying patients in different settings of care. [4]

End-of-life care pathways are based on a “gold standard” of end-of-life care as developed in the hospice setting. However, whilst the key goals form a common core of all end-of-life care pathways, specific prescribing guidance is largely derived from expert opinion, and often reflects variations in local practices. The evidence base to support specific prescribing recommendations is often not strong. [5]

What is known

  • Despite the widespread implementation of end-of-life care pathways, a recent Cochrane review could not identify any well designed controlled studies that assessed the effects of these pathways on care for the dying. [6] However there is supportive evidence from audits and implementation studies in different health care settings. [7-11]
  • A systematic review identified a lack of research about death in nursing homes, despite the fact that it is a common site for end-of-life care to be given. The studies which were included found there were problems in identification of the patients requiring end-of-life care, lack of symptom control and high prevalence of poorly controlled pain, and improvements in care when palliative care providers were involved in care in the nursing home setting. Their involvement led to improvements in pain control, increased numbers of residents having advance care plans, and decreased numbers of hospitalisations at the end of life. [12]
  • End-of-life care and decision-making are frequent issues for critically ill patients in intensive care units. [13] Issues identified in the literature suggest that, as in other healthcare settings, communication and processes of decision-making are the main concerns of families, as well as adequacy of pain management during the dying process. [14] Consensus guidelines are evolving regarding the best practice in caring for dying patients in the ICU environment. [15] 
  • Having inadequate family support and / or community-based palliative care services is often, in practice, a limiting factor for patients who wish to die at home. [16-17] However planning ahead and good teamwork may help prevent unwanted hospitalisation when a dying person wants to stay at home. [18]

What it means in practice

  • Planning the end-of-life care for a dying patient may also require an assessment of the setting in which the person is being cared for, and of the capacity and needs of the caregivers.
  • Caregivers, including the family, need to understand the plan of care, and be able to contribute to decision-making and ongoing assessment of the patient. Good teamwork, good documentation, and good communication are essential. 
  • Strategies that focus on education and culture change, and developing appropriate quality measures, should be individualised to the setting of care. Nonetheless, key principles of end-of-life care remain the same in all settings. 
  • The Gold Standards Framework (UK), is a model which promotes palliative care provision in the primary care / general practice setting, and has been shown to improve processes of care for patients in the community, although it needs to be further evaluated with regard to direct outcomes for patients and caregivers. [20]
  1. Robinson CA, Pesut B, Bottorff JL, Mowry A, Broughton S, Fyles G. Rural palliative care: a comprehensive review. J Palliat Med. 2009 Mar;12(3):253-8.
  2. Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer. J Clin Nurs. 2009 May;18(10):1379-93. Epub 2009 Apr 8.
  3. Espinosa L, Young A, Walsh T. Barriers to intensive care unit nurses providing terminal care: an integrated literature review. Critical Care Nursing Quarterly. 2008 Jan-Mar;31(1):83-93. 
  4. Ellershaw J, Smith C, Overill S, Walker SE, Aldridge J. Care of the dying: setting standards for symptom control in the last 48 hours of life. J Pain Symptom Manage. 2001 Jan;21(1):12-7.
  5. Von Gunten CF. Interventions to manage symptoms at the end of life. J Palliat Med. 2005;8 Suppl 1:S88-94.
  6. Chan R, Webster J. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database Syst Rev. 2010 Jan 20;(1):CD008006.
  7. Veerbeek L, van Zuylen L, Gambles M, Swart SJ, van der Heide A, van der Rijt CC, et al. Audit of the Liverpool Care Pathway for the Dying Patient in a Dutch cancer hospital. Journal of Palliative Care. 2006 Winter;22(4):305-8.  [no abstract available]
  8. Hardy JR, Haberecht J, Maresco-Pennisi D, Yates P. Audit of the care of the dying in a network of hospitals and institutions in Queensland. Intern Med J. 2007 May;37(5):315-9.
  9. Jack BA, Gambles M, Murphy D, Ellershaw JE. Nurses' perceptions of the Liverpool Care Pathway for the dying patient in the acute hospital setting. Int J Palliat Nurs. 2003 Sep;9(9):375-81.
  10. Matthews K, Gambles M, Ellershaw JE, Brooke L, Williams M, Hodgson A, et al. Developing the Liverpool Care Pathway for the dying child. Paediatr Nurs. 2006 Feb;18(1):18-21.
  11. Veerbeek L, van Zuylen L, Swart SJ, van der Maas PJ, de Vogel-Voogt E, van der Rijt CC, et al. The effect of the Liverpool Care Pathway for the dying: a multi-centre study. Palliat Med. 2008 Mar;22(2):145-51.
  12. Oliver DP, Porock D, Zweig S. End-of-life care in U.S. nursing homes: a review of the evidence. J Am Med Dir Assoc. 2004 May-Jun;5(3):147-55.
  13. Curtis JR. Interventions to improve care during withdrawal of life-sustaining treatments. J Palliat Med. 2005;8 Suppl 1:S116-31.
  14. Levy MM, McBride DL. End-of-life care in the intensive care unit: state of the art in 2006. Crit Care Med. 2006 Nov;34(11 Suppl):S306-8.
  15. Mularski RA, Curtis JR, Billings JA, Burt R, Byock I, Fuhrman C, et al. Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup. Crit Care Med. 2006 Nov;34(11 suppl):S404-11.
  16. Gomes B, Higginson IJ. Factors influencing death at home in terminally ill patients with cancer: systematic review. BMJ. 2006 Mar 4;332(7540):515-21. Epub 2006 Feb 8.
  17. Murray MA, Fiset V, Young S, Kryworuchko J. Where the dying live: a systematic review of determinants of place of end-of-life cancer care. Oncol Nurs Forum. 2009 Jan;36(1):69-77.
  18. Pooler J, McCrory F, Steadman Y, Westwell H, Peers S. Dying at home: a care pathway for the last days of life in a community setting. Int J Palliat Nurs. 2003 Jun;9(6):258-64.
  19. National EOL Framework Forum. Health system reform and care at the end of life: a guidance document. Canberra: Palliative Care Australia; 2010.
  20. Shaw KL, Clifford C, Thomas K, Meehan H. Improving end-of-life care: a critical review of the Gold Standards Framework in primary care. Palliat Med. 2010 Apr;24(3):317-29. Epub 2010 Feb 15.

Guidelines

Overview article

GPs

Residential Aged Care

Last updated 18 January 2017