Personal legacy and treatment choices for serious illness: a scoping review

Abstract

BackgroundLegacy—how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illness.ObjectivesWe conducted a scoping review to answer the following research questions: (1) How do people making treatment choices conceive of legacy? and (2) What treatment choices do people make with legacy in mind?Eligibility criteriaParticipants included people facing serious illness who discussed how they wanted to be remembered after their own death, or how they hoped to impact others, as they made treatment choices. Studies in English published between 1990 and 2022 were included.Sources of evidenceWe conducted searches in electronic databases including Medline/PubMed, CINAHL, PsycInfo, SocialWork, AnthropologyPlus, Web of Science, ProQuest and EMBASE databases.Data synthesisWe used an electronic screening tool to screen abstracts and review full-text articles suitable for inclusion. We analysed included articles using Atlas.ti. We constructed tables and narratively synthesised the findings.ResultsWe identified three major intersecting legacy goals that influence choices people facing serious illness make about their treatment and health behaviours, and the types of choices people make with legacy in mind. The three legacy goals are: remembrance of the individual self, remembrance of the social self and impact on others’ well-being.ConclusionsWe identify the importance of legacy to patient treatment choices. Understanding for whom this construct is important, what types of legacy goals people hold and how those goals impact treatment choices is necessary to provide patient-centred whole-person care to people facing serious illness.