Voluntarily stopping eating and drinking (VSED): A systematic mixed-methods review focusing on the carers' experiences

Abstract

Background: Voluntary stopping of eating and drinking (VSED) is a way to end one's life prematurely. We synthesized the empirical data on VSED.

Methods: In this systematic mixed-methods review, we searched MEDLINE, CINAHL, PsycINFO, Google Scholar, and BELIT for English and German articles published between January 1, 2013 and November 12, 2021. We included quantitative and qualitative research examining the experiences, attitudes, and knowledge of people confronted with VSED. We inductively analyzed the data after quantitative data transformation. We assessed quality and confidence using the Mixed-Methods Appraisal Tool and GRADE-CERQual approach, respectively. This study was registered in PROSPERO (CRD42022283743).

Findings: We identified 22 eligible articles, comprising 16 studies. The participants were healthcare professionals and relatives, but not individuals undertaking VSED. We present here our findings on the challenges of accompanying VSED, positive experiences with VSED, and the identified needs. Support during VSED is needed at multiple levels (medical care, family relief, course planning), and the willingness to accompany VSED is very high among healthcare professionals. However, there are several problems, the most obvious being the lack of knowledge and expertise regarding VSED, placing a great burden on families and professionals. The confidence in the review findings ranged from moderate to low.

Interpretation: Evidence-based guidance, in-depth knowledge, and training of healthcare professionals can greatly reduce the burden and fear among individuals accompanying VSED.

Keywords: End-of-life; Hastened death; Health professionals; Relatives; Systematic mixed-methods review; Voluntarily stopping eating and drinking (VSED).