End-of-life care has been identified as an important aspect of quality of care.  However, there are difficult methodological problems in evaluating and measuring outcomes in relation to end of life care. This is an evolving area of research.

What is known

• A systematic review has studied outcome measures in end-of-life care. It identified measures addressing the following domains: quality of life; physical symptoms; emotional and cognitive symptoms; advance care planning; functional status; spirituality; grief and bereavement; satisfaction and quality of care; and caregiver wellbeing. Included measures have all been psychometrically assessed, however many were used in only one study or in only one setting. Areas to focus on for developing tools include continuity of care, advance care planning, spirituality, grief and bereavement, and development of measures that are feasible in a variety of settings. [1]

What it means in practice

• A framework for a national approach to end of life care across the whole health sector in Australia has been released, and this identifies the main values on which end of life care should be based and evaluated. [2] The overarching principles are that ned of life care should be person and carer focused, driven by information, and organised for quality and safety.
• Understanding what works in end-of-life care across the healthcare system requires that valid, robust quality measures be used in research, and incorporated into routine care. [3-4] The development of shared datasets should also include valid measures of quality of end-of-life care. [2, 5]
• The Liverpool Care Pathway was developed in part as an audit tool. [6] Where end of life care pathways are incorporated into routine clinical care, they have the potential to provide information about quality of care in different settings, and to be used for benchmarking, quality improvement, and research. [7]

Finding out more
Guidelines

• National EOL Framework Forum. Health system reform and care at the end of life: a guidance document. Palliative Care Australia, Canberra. May 2010. 
• Overview of the domains of variables relevant to end-of-life care 
  Ferrell BR.Overview of the domains of variables relevant to end-of-life care J Palliat Med. 2005;8 Suppl 1:S22-9.
• Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation 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]

Overview article

• Cancer care quality measures: symptoms and end-of-life care. 
  Lorenz K, Lynn J. Cancer care quality measures: symptoms and end-of-life care. Evidence Report/Technology Assessment No. 137. Rockville MD; AHRQ Publication No.06-E001: 2006 

Related CareSearch pages
Principles of end of life care
End of life care in different settings
Audit tools

References

1. Mularski RA, Dy SM, Shugarman SR, Wilkinson AM, Lynn J, Shekelle PG et al. A systematic review of measures of end-of-life care and its outcomes. Health Services Research. 2007 Oct;42(5):1848-70. 
2. National EOL Framework Forum. Health system reform and care at the end of life: a guidance document. Palliative Care Australia, Canberra. May 2010. 
3. Higginson IJ. End-of-life care: lessons from other nations. Journal of Palliative Medicine. 2005;8(suppl 1):S161-73. 
4. Tulsky JA. Interventions to enhance communication among patients, providers, and families. Journal of Palliative Medicine. 2005;8(suppl 1):S95-101.  
5. Casarett DJ, Teno J, Higginson I. How should nations measure the quality of end-of-life care for older adults? Recommendations for an international minimum data set. Journal of the American Geriatrics Society. 2006 Nov;54(11):1765-71.  
6. Ellershaw J, Foster A,  Murphy D, Overill S, Shea T. Developing an integrated care pathway for the dying patient. European Journal of Palliative Care. 1997;4(6):203-7.
7. Fowell A, Finlay I, Johnstone R, Minto L. An integrated care pathway for the last two days of life: a pathway for implementing a pathway. Journal of Integrated Care Pathways. 2003 Dec;7(3):91-9. 

This page was created on 19 June 2008
Last updated 2 March 2011