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Advance care planning evaluation: a scoping review of best research practice
  1. Sophie Gloeckler1,2,
  2. Tanja Krones1,3 and
  3. Nikola Biller-Andorno1
  1. 1Institute for Biomedical Ethics and History of Medicine, Universität Zürich, Zurich, Switzerland
  2. 2School of Nursing, Columbia University, New York, New York, USA
  3. 3Clinical Ethics, UniversitätsSpital Zürich, Zurich, Switzerland
  1. Correspondence to Professor Nikola Biller-Andorno, Institute for Biomedical Ethics and History of Medicine, Universität Zürich, Zurich 8006, Switzerland; biller-andorno{at}ibme.uzh.ch

Abstract

Various indicators have been used to evaluate advance care planning, including completion rates, type of care received, and satisfaction. Recent consensus suggests, though, that receiving care consistent with one’s goals is the primary outcome of advance care planning and assessment should capture this metric. Goal concordant care is challenging to measure, and there is little clarity about how best to do so. The aim of this scoping review is to explore what methods have been used to measure goal concordant care in the evaluation of advance care planning. PubMed, Embase, PsycINFO, CINAHL and Cochrane were searched in September 2020 to identify studies that aimed to track whether advance care planning affected the likelihood of patients receiving care that matched their preferred care. 135 original studies were included for review. Studies used retrospective chart review (36%, n=49), questionnaire (36%, n=48) and interview (31%, n=42), focusing on both patients and proxies. Studies considered both actual care received (55%, n=74) and hypothetical scenarios anticipating possible future care (49%, n=66); some studies did both. While the reviewed studies demonstrate the possibility of working towards a solid methodology, there were significant weaknesses. Notably, studies often lacked enough reporting clarity to be reproducible and, relatedly, key concepts, such as end-of-life or preferred care, were left undefined. The recommendations that follow from these findings inform future research approaches, supporting the development of a strong evidence base to guide advance care planning implementation in practice.

  • clinical decisions
  • communication
  • end of life care
  • methodological research
  • quality of life
  • ethics

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Footnotes

  • Contributors SG was involved in conceptualising the study, developing the methodology, performing analysis, and writing the original draft. NB-A was involved in supervising and conceptualising the study as well as in the review and editing of the writing. TK was involved in conceptualising the study as well as in the review and editing of the writing.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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