End-of-Life Care

Key Messages (this topic is currently under review) 

  • It is essential to identify the dying patient in order to allow them & their care givers to reorient their priorities, achieve their goals, and so that appropriate end-of-life care can be provided. [1-3]
  • Best practice in end-of-life care focuses on supporting both the patient and their family. [4] 
  • End-of-life care attends not just to the physical but also the psychosocial and spiritual concerns of patients and their families, and extends into the bereavement period. It requires very good communication and teamwork from health care professionals. [3,5-7]
  • Physical problems that must be anticipated and proactively addressed for the comfort of the dying person include pain, delirium / agitation, dyspnoea, respiratory secretions, mouth and skin care, bladder and bowel care, and nausea and vomiting. Burdensome interventions which do not improve the dying person’s comfort should also be ceased whenever possible.


There is no clear cut definition of the 'end of life'. In general it refers to the last few days of life when a person is irreversibly dying, also known as the terminal phase. Whilst there are situations in which it is possible to identify the terminal phase with some accuracy, many diseases have a natural history of progression and exacerbations which makes the transition to the terminal phase difficult to identify. [8]

Caring for patients around the time of death has always been at the core of palliative care practice. An evolving body of research explores the attitudes and values of patients and their families, and confirms that there is community support for the principles on which the palliative care approach to end-of-life care is based. [1,5,9]

End-of-life practices of palliative care historically evolved within hospices [10] and have subsequently been adapted to other settings where many predictable deaths occur, such as nursing homes and acute hospitals, or at home. However there are challenges in extending palliative care end-of-life practices to these settings, so that every patient dying a predictable death can experience the benefits of good end-of-life care. [11] A national framework to improve end-of-life care across the whole Australian health care system has recently been developed. [12]

End-of-life care activities by palliative care practitioners therefore have two goals. Firstly, to provide care for individual patients and their families in order to minimise suffering and distress; and secondly, to develop healthcare system-wide strategies to ensure best practice in end-of-life care wherever the dying person is cared for.

Issues covered in this section include:

Principles of end-of-life care
Patient and family experience of receiving end-of-life care
Symptom management at the end of life
End of life care in different settings, and end-of-life care pathways 
Evaluation and quality assessment

Active research areas / controversies

  • This concept of 'satisfaction with end-of-life care' offers a new approach to assessing the impact of end-of-life care on patients and families, and tools for evaluating these domains need to be further developed. [13]
  • End-of-life care pathways are an approach to improving end of life care across different settings. They are being adopted widely in the UK, and are also beginning to be used in Australia. They provide valuable data about quality of care in the settings where they are used, but the overall impact of adopting this approach to providing care has yet to be studied. [14] As a complex clinical intervention they require evaluation for their effects on patients, on families, and on healthcare teams, as well as on outcomes of end-of-life care.
  • The evidence base to support prescribing at the end of life is not well developed, and this is an area where specific research in appropriate populations is needed. [15]
  • Advance care planning has been identified as a way to ensure that the patients’ own wishes can be taken into account, although there are many systemic and individual barriers to the use of this approach, and its true usefulness is debated. [16] Respecting Patient Choices is a program that has been developed to encourage and promote advance care planning, and a recent randomised controlled trial demonstrates that this program can significantly increase the likelihood of patients receiving care that matches their wishes. [17]

PubMed Searches

  1. Bookbinder M, Rutledge DM, Donaldson NE. Pravikoff DS. End-of-life care series. Part I. Principles. Online J Clin Innovat. 2001 Nov 15;4(4):1-30. No Abstract Available.
  2. Lamont EB. A demographic and prognostic approach to defining the end of life. J Palliat Med. 2005;8 Suppl 1:S12-21.
  3. Hancock K, Clayton JM, Parker SM, Walder S, Butow PN Carrick S, et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007 Sep;21(6):507-17.
  4. Andershed B. Relatives in end-of-life care--part 1: a systematic review of the literature the five last years, January 1999-February 2004. J Clin Nurs. 2006 Sep;15(9):1158-69.
  5. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, Grambow S, Parker J, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001 Sep;22(3):727-37.
  6. Tulsky JA. Interventions to enhance communication among patients, providers, and families. J Palliat Med. 2005;8 Suppl 1:S95-102.
  7. Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007 Jul;34(1):81-93. Epub 2007 May 25.
  8. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003 May 14;2879(19):2387-92.
  9. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians and other care providers. JAMA. 2000 Nov 15;284(19):2476-82.
  10. 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.
  11. Rutledge DN, Donaldson NE, Pravikoff DS. End-of-life care series. Part II. End-of-life care for hospitalized adults in America: learnings from the SUPPORT and HELP studies. Online J Clin Innovat. 2001;4(6):1-60. No Abstract Available.
  12. National EOL Framework Forum. Health system reform and care at the end of life: a guidance document. Canberra: Palliative Care Australia; 2010. (918kb pdf)
  13. Dy SM, Shugarman LR, Lorenz KA, Mularski RA, Lynn J; RAND-Southern California Evidence-Based Practice Center. A systematic review of satisfaction with care at the end of life. J Am Geriatr Soc. 2008 Jan;56(1):124-9. Epub 2007 Nov 20.
  14. 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.
  15. Von Gunten CF. Interventions to manage symptoms at the end of life. J Palliat Med. 2005;8 Suppl 1:S88-94.
  16. Barnard D. Advance care planning is not about "getting it right." J Palliat Med. 2002 Aug;5(4):475-81. No Abstract Available.
  17. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010 Mar 23;340:c1345. 

Last updated 18 January 2017