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. 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. 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 aged care, or a surgical unit, or an oncology ward. [1] 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. [2]

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 practices is often not strong. [3]

What is known

• 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. [4]
• End-of-life care and decision-making are frequent issues for critically ill patients in intensive care units. [5]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. [6] Consensus guidelines are evolving regarding the best practice in caring for dying patients in the ICU environment. [7]
• 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. [8] However planning ahead and good teamwork may help prevent unwanted hospitalisation when a dying person wants to stay at home. [9]
• Despite the widespread use of end-of-life care pathways, there are few studies to provide high level evidence exploring their impact on outcomes of end of life care. However there is supportive evidence from audits and implementation studies in different health settings. [10-14]

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.
• 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.
• System wide improvements in end of life care are likely to require significant culture change in the healthcare system, and the introduction and evaluation of clinical pathways for end-of-life care may contribute to this change.

Finding out more
Guidelines

• Guidelines for a Palliative Approach in Residential Aged Care 
  National Health & Medical Research Council, Edith Cowan University. Guidelines for a palliative approach in residential aged care. Enhanced version May 2006, edited by National Palliative Care Program. Canberra: Australian Government Department of Health and Ageing; 2006.
• The medical care of older person in residential aged care facilities: the Silver book
  Royal Australian College of General Practitioners, 4th edition, 2005  
• Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Woods Johnson Critical Care Workgroup 
  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. Critical Care Medicine. 2006 Nov;34(11 Suppl):S404-11
• Gold Standards Framework (UK) 
  Gold Standards Framework © Keri Thomas and Department of Health England 2005
• Liverpool Care Pathway 
  Marie Curie Palliative Care Institute

Overview article

• Until the Chemist Opens: Palliation from the doctor’s bag 
  Seidel R, Sanderson C, Mitchell G, Currow D. Unitl the chemist opens: Palliation from the doctor's bag. Australian Family Physician Vol. 35, No. 4, April 2006
• Caring for patients with critical illness and their families: the value of the integrated clinical team
  Curtis J. Caring for Patients With Critical Illness and Their Families: the Value of the Integrated Clinical Team. Respiratory Care 2008; 53(4)

Related CareSearch pages
Dying patients and their caregivers
Palliative care in residential aged care facilities

References

1. 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. 
2. 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. Journal of Pain & Symptom Management. 2001 Jan;21(1):12-7.  
3. Von Gunten CF.Interventions to manage symptoms at the end of life. Journal of Palliative Medicine. 2005;8(suppl 1):S88-94. 
4. Oliver DP, Porock D, Zweig S.End-of-life care in U.S. nursing homes: a review of the evidence. Journal of the American Medical Directors Association. 2004 May-Jun;5(3):147-55.
5. Curtis JR. Interventions to improve care during withdrawal of life-sustaining treatments. Journal of Palliative Medicine. 2005;8(suppl 1):S116-31.  
6. Levy M, McBride D. End-of-life care in the intensive care unit: state of the art in 2006. Critical Care Medicine. 2006 Nov;34(11 Suppl):S306-8. 
7. 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. Critical Care Medicine. 2006 Nov;34(11 suppl):S404-11.
8. 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. 
9. 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. International Journal of Palliative Nursing. 2003 Jun;9(6):258-64. 
10. 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. Palliative Medicine. 2008 Mar;22(2):145-51. 
11. 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]
12. 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. Internal Medicine Journal. 2007 May;37(5):315-9.
13. Jack BA, Gambles M, Murphy D, Ellershaw JE. Nurses' perceptions of the Liverpool Care Pathway for the dying patient in the acute hospital setting. International Journal of Palliative Nursing. 2003 Sep;9(9):375-81.  
14. Matthews K, Gambles M, Ellershaw JE, Brooke L, Williams M, Hodgson A, et al. Developing the Liverpool Care Pathway for the dying child. Paediatric Nursing. 2006 Feb;18(1):18-21.
15. National Health & Medical Research Council, Edith Cowan University. Guidelines for a palliative approach in residential aged care. Enhanced version May 2006, edited by National Palliative Care Program. Canberra: Australian Government Department of Health and Ageing; 2006.
16. 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. Critical Care Medicine. 2006 Nov;34(11 Suppl):S404-11. 

This page was created on 19 June 2008 and is due for review in June 2010
Last updated 19 June 2008