Evaluation and Quality Assessment of End-of-Life Care

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 end-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]
  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 Serv Res. 2007 Oct;42(5):1848-70.
  2. National EOL Framework Forum. Health system reform and care at the end of life: a guidance document. Canberra: Palliative Care Australia; 2010. (918kb pdf)
  3. Higginson IJ. End-of-life care: lessons from other nations. J Palliat Med. 2005;8 Suppl 1:S161-73.
  4. Tulsky JA. Interventions to enhance communication among patients, providers, and families. J Palliat Med. 2005;8 Suppl 1:S95-102.
  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. J Am Geriatr Socy. 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. Eur J Palliat Care. 1997 Nov-Dec;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. J Integr Care Pathw. 2003 Dec;7(3):91-9. No Abstract Available.

Guidelines

Overview article

Last updated 18 January 2017