Good end-of-life care is based on the understanding that death is inevitable, and a natural part of life. As the final stage in a person’s life it is a uniquely important time for the dying person and their family and close friends.

The goal of end-of-life care is to maintain the comfort, choices, and quality of life of a person who is recognised to be dying (in the terminal phase), to support their individuality, and to care for the psychosocial and spiritual needs of themselves and their families.  Support for families, if needed, continues after death as bereavement care. End of life care also aims to reduce inappropriate and burdensome healthcare interventions and to offer a choice of place of care when possible.

What is known
There is a body of good evidence (mostly from the USA) which suggests that the factors that are most important to patients and families at the end of life are:

• Pain and symptom management
• Preparation for the end of life 
• Relationships between patients, family members and healthcare providers 
• Achieving a sense of completion [1, 2].

Spiritual care is regarded as important by many patients and families at the end of life [3-5].

The concept of satisfaction with end-of-life care has been studied in a recent systematic review. A number of aspects of patient and family satisfaction with care are identified in the literature; they are - accessibility, co-ordination, and competence of health care services, quality of communication and relationships with healthcare providers, personalisation of care, and support for decision-making. A meta-analysis of studies of end-of-life care showed that palliative care services improved satisfaction with end of life care [6].

Advance care planning aims to encourage people to consider, discuss, and document their future wishes for care. The impact of advance care planning is mixed, and uptake of advance care planning processes has not been widespread.  In a very large US study of the impact of advance care planning on complex hospital care at the end of life, the SUPPORT trial, it appears that advance care planning did not significantly affect outcomes. However, there is also evidence from the SUPPORT study that a substantial minority of seriously ill patients wish to discuss their treatment preferences, and may not have the opportunity to do so [7].

Discussions of goals of care or advanced planning can optimise patients preferences at end of life [8].

What it means in practice

• The most effective end-of-life care is provided when there is skillful communication with patients and families about realistic goals of care, and attention to understanding the patient’s and family’s  concerns [9, 10] as well as competent symptom management.
• In order to achieve the goals which are important to patients and families, and to provide good end-of-life care, it is essential to identify that a patient is imminently dying [11].
• It is sometimes difficult to identify when a person is close to the terminal phase with a prognosis of days to weeks but, where this is possible, this knowledge may be of great value to patients so that they can reorient their priorities [11].

Related CareSearch pages
The palliative approach in general practice
Assessing prognosis
Effective communication
Advance care planning

Finding out more
Guidelines

• Clinical practice guidelines for communicating prognosis and end-of-life issues with adults
  Clayton JM, Hancock KM,  Butow PB, Tattersall MHN and Currow DC. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers Med J Aust 2007; 186 (12): S77-S108.
• Gold Standards Framework Prognostic Indicator Guidance
  Prognostic Indicator Paper Vs 5. Sept 2008 Gold Standards Framework Programme England.

References

1. 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. Journal of Pain and Symptom Management. 2001 Sep;22(3):727-37  
2. Bookbinder M, Rutledge DM, Donaldson NE. Pravikoff DS. End-of-life care series. Part I. Principles. Online Journal of Clinical Innovation. 2001 Nov 15;4(4):1-30.  
3. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, psysicians and other care providers. JAMA. 2000 Nov 15;284(19):2476-82  
4. Chochinov HM, Cann BJ. Interventions to enhance the spiritual aspects of dying. Journal of Palliative Medicine. 2005;8(suppl 1):S103-15.  
5. Williams AL. Perspectives on spirituality at the end of life: a meta-summary. Palliative & Supportive Care. 2006 Dec;4(4):407-17.  
6. Dy SM, Shugarman LR, Lorenz KA, Mularski RA, Lynn J. A systematic review of satisfaction with care at the end of life. Journal of the American Geriatrics Society. 2008 Jan;56(1):124-9. 
7. 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 Journal of Clinical Innovation. 2001;4(6):1-60 
8. Lorenz KA, Lynn J, Dy SM, Shugarman LR, Wilkinson A, Mularski RA, et al. Evidence for improving palliative care at the end of life: a systematic review. Annals of Internal Medicine. 2008 Jan 15;148(2):147-59. 
9. Tulsky JA. Interventions to enhance communication among patients, providers, and families. Journal of Palliative Medicine. 2005;8(suppl 1):S95-101.  
10. 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. Journal of Pain and Symptom Management. 2007 Jul;34(1):81-93.  
11. Lamont EB. A demographic and prognostic approach to defining the end of life. Journal of Palliative Medicine. 2005;8(suppl 1):S12-21. 

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