Family experiences of in-hospital end-of-life care for adults: A systematic review of qualitative evidence

Abstract

Aim: To systematically identify, appraise, aggregate and synthesise qualitative evidence on family members’ experiences of end-of-life care (EoLC) in acute hospitals. Methods: A systematic review and qualitative evidence synthesis based on the Joanna Briggs Institute methodology. Primary research, published 2014 onwards was identified using a sequential strategy of electronic and hand searches. Six databases (CINAHL, Medline, Embase, EMCare, PsycINFO, BNI) were systematically searched. Studies that met pre-determined inclusion/exclusion criteria were uniformly appraised using the Critical Appraisal Skills Programme checklist for qualitative research, and synthesised using a meta-aggregative approach. The ENTREQ statement was used as a checklist for reporting the review. Results: Sixteen studies of European, Australasian and North American origin formed the review. The quality of each study was considered very good in view of a ‘yes’ response to most screening questions. Extracted findings were assembled into 12 categories, and five synthesised findings: Understanding of approaching end of life; essential care at the end of life; interpersonal interactions; environment of care; patient and family care after death. Conclusion: Enabling and improving peoples’ experience of EoLC must remain part of the vision and mission of hospital organisations. Consideration must be given to the fulfilment of family needs and apparent hallmarks of quality care that appear to influence experiential outcomes. Relevance to clinical practice: This review of qualitative research represents the first-stage development of a family-reported experience measure for adult EoLC in the hospital setting. The synthesised findings provide a Western perspective of care practices and environmental factors that are perceived to impact the quality of the care experience. Collectively, the review findings serve as a guide for evidence-informed practice, quality improvement, service evaluation and future research. A developed understanding of the families’ subjective reflections creates reciprocal opportunity to transform experiential insights into practical strategies for professional growth and practice development.