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Systematic review
Personal legacy and treatment choices for serious illness: a scoping review
  1. Marlaine Figueroa Gray1,
  2. Sarah Randall2,
  3. Mateo Banegas3,
  4. Gery W Ryan4 and
  5. Nora B Henrikson1
  1. 1 Kaiser Permanente Washington Health Research Institute, Seattle, Washington, USA
  2. 2 University of Washington, Seattle, Washington, USA
  3. 3 Radiation Medicine and Applied Science, University of California San Diego, La Jolla, California, USA
  4. 4 Kaiser Permanente Bernard J Tyson School of Medicine, Pasadena, California, USA
  1. Correspondence to Dr Marlaine Figueroa Gray; Marlaine.S.Figueroagray{at}kp.org

Abstract

Background Legacy—how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illness.

Objectives We 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 criteria Participants 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 evidence We conducted searches in electronic databases including Medline/PubMed, CINAHL, PsycInfo, SocialWork, AnthropologyPlus, Web of Science, ProQuest and EMBASE databases.

Data synthesis We 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.

Results We 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.

Conclusions We 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.

  • Communication
  • Cancer
  • Cultural issues
  • End of life care
  • Spiritual care
  • Terminal care

Data availability statement

Data sharing not applicable as no datasets were generated and/or analysed for this study.

https://doi.org/10.1136/spcare-2023-004439

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    Data availability statement

    Data sharing not applicable as no datasets were generated and/or analysed for this study.

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    Footnotes

    • Contributors MFG led the scoping review, analysis and writing of this manuscript. SR assisted with review, analysis and writing of this manuscript. NBH provided expert guidance on all aspects of the scoping review and paper writing. GWR and MB provided input on the review, analysis and manuscript writing. MFG is the guarantor.

    • Funding This research was funded by an NCI Diversity Supplement to the CAFÉ study, a clinic-based intervention to address financial hardship for people with cancer (CAFÉ) R01CA237322-01 Henrikson/Banegas.

    • Competing interests None declared.

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