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How well do current instruments using bereaved relatives’ views evaluate care for dying patients?

Marie Curie Palliative Care Institute, Royal Liverpool & Broadgreen University Hospitals Trust, Liverpool

EMI Williams

Division of Public Health, University of Liverpool, Liverpool

JE Ellershaw

Marie Curie Palliative Care Institute, Royal Liverpool & Broadgreen University Hospitals Trust, Liverpool

Background: Providing good quality of care for dying patients and their families has been highlighted as a national priority in the UK. Defining and measuring the quality of this care is therefore important. Using the views of patients has practical and ethical difficulties, so an alternative approach is to seek the views of bereaved relatives and close friends after the patients’ death. Aim: To identify and critically appraise instruments previously used with bereaved relatives to measure the quality of care for dying patients and the level of support provided to the family. Methods: A literature review was undertaken using Medline, Cinahl, Embase and AMED databases from 1985 to 2005. The search strategy was based on the following headings: quality of care, dying, assessment and relatives. Key criteria were set for the appraisal of each instrument. Results: Analysis of the 229 articles identified from the searches, yielded seven instruments used with bereaved relatives to assess the quality of ‘care for the dying’. Discussion: Each of these instruments was carefully constructed and all but one had clear documentation of validity and reliability measures. Two instruments used ‘satisfaction’ as an outcome measure, limiting their ability to discriminate between adequate and excellent care. Only one instrument was developed in the UK making it more ‘user-friendly’ for direct use in the UK. Conclusion: None of the instruments in their current format could comprehensively evaluate ‘care for the dying’ in the UK healthcare setting. We would propose to develop and validate a tool specifically assigned for this purpose.

Key Words: assessment • dying • proxy • quality of care • relatives

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