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End-of-life care quality measures: beyond place of death.

Accepted version
Peer-reviewed

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Article

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Abstract

BACKGROUND: How quality in healthcare is measured shapes care provision, including how and what care is delivered. In end-of-life care, appropriate measurement can facilitate effective care and research, and when used in policy, highlight deficits and developments in provision and endorse the discipline necessity. The most prevalent end-of-life quality metric, place of death, is not a quality measure: it gives no indication of the quality of care or patient experience in the place of death. AIM: To evaluate alternative measures to place of death for assessing quality of care in end-of-life provision in all settings. METHOD: We examine current end-of-life care quality measures for use as metrics for quality in end-of-life care. We categorise approaches to measurement as either: clinical instruments, mortality follow-back surveys or organisational data. We review each category using four criteria: care setting, patient population, measure feasibility, care quality. RESULTS: While many of the measure types were highly developed for their specific use, each had limitations for measuring quality of care for a population. Measures were deficient because they lacked potential for reporting end-of-life care for patients not in receipt of specialist palliative care, were reliant on patient-proxy accounts, or were not feasible across all care settings. CONCLUSION: None of the current end-of-life care metric categories can currently be feasibly used to compare the quality of end-of-life care provision for all patients in all care settings. We recommend the development of a bespoke measure or judicious selection and combination of existing measures for reviewing end-of-life care quality.

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Keywords

Methodological research

Journal Title

BMJ Support Palliat Care

Conference Name

Journal ISSN

2045-435X
2045-4368

Volume Title

Publisher

BMJ
Sponsorship
Marie Curie Cancer Care (unknown)
The Marie Curie Design to Care is a service improvement programme. This research forms part of the design phase of this programme (grant number: RG87570), which is funded by Marie Curie, the UK’s leading charity caring for people living with any terminal illness and their families. SH and SB were funded by the Marie Curie grant to undertake this research. SH is based in The Healthcare Improvement Studies Institute (THIS Institute), University of Cambridge. THIS Institute is supported by the Health Foundation, an independent charity committed to bringing about better health and healthcare for people in the UK. BA and SB are supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridge and Peterborough NHS Foundation Trust. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.