Self-care towards the end of life: A systematic review and narrative synthesis on access, quality and cost

Background: Policy and practice encourages patients to engage in self-care, with individual patient management and remote monitoring of disease. Much is known of the moderate stage of chronic disease, without a clear understanding of how self-care applies towards the end of life.

Aim: To review the current evidence on practices of self-care in life-limiting conditions and its impacts on healthcare utilisation, quality of life and associated costs.

Design: We systematically searched 10 scientific databases (MEDLINE, CINAHL, Embase, PsycINFO, Cochrane Central, Cochrane Database of Systematic Reviews, Scopus, Sociological Abstracts, Social Work Abstracts and Health Management Information Consortium) from inception to October 2023 with citation and hand searching. A narrative synthesis was undertaken, with quality and relevance assessed using Gough's Weight of Evidence framework. Titles and abstracts were independently screened by three researchers.

Results: Findings from 33 studies revealed self-care as increasingly burdensome or unfeasible towards the end of life, with patients delaying use of professional care. Self-care became increasingly burdensome for patients, carers and professionals as illness progressed. Self-monitoring may exacerbate hospitalisations as patients delayed seeking professional help until crises arose. Findings regarding quality were inconclusive, with some evidence suggesting that self-care can decrease care costs.

Conclusions: This review has shown that research on self-care is an evolving area of study, with a current focus on acute care and hospitalisations. Future research should seek to provide a more complete account of the relation between self-care and non-acute care use, and quality, with further efforts to study self-care costs incurred through self-funding.