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Cited by 88Palliative Care and End-of-Life IssuesEthics and bioethics in healthcareEthics in medical practice

The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

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Su, Ya, Yuki, Michiko, Hirayama, Kengo·2020·Patient Education and Counseling
DOI 10.1016/j.pec.2019.12.011
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Abstract

OBJECTIVE: Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers' experiences and perspectives toward making surrogate decisions is needed. METHODS: This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008). RESULTS: Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates' experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults' wishes, and negative impact. CONCLUSION: Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances. PRACTICE IMPLICATIONS: This review informs healthcare providers' awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.

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  • Rooted in values of filial piety and moral accountability, caregivers often viewed treatment choices as moral duties rather than shared responsibilities, which amplified their distress and self-reproach.

    “Rooted in values of filial piety and moral accountability, caregivers often viewed treatment choices as moral duties rather than shared responsibilities, which amplified their distress and self-reproach.”

    From The burdens, coping strategies, and unmet needs of family caregivers of Chinese patients with lymphoma receiving commercial CAR-T-cell therapy: A qualitative study (2026) · cites this paper as [51]

    In “Surrogate decision-makers assume a serious responsibility” (page not provided), the review links filial duty to guilt and regret in placement decisions, and reports that surrogates felt alone and feared blame when making decisions without family support. It does not establish that caregivers generally viewed treatment choices as moral duties rather than shared responsibilities; it also notes that collective decision-making can create family conflict. (LLM, conf=0.84)

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Cited by

Sorted by citations

Authors
Su, Y., Yuki, M., & Hirayama, K.
Affiliations
Hokkaido University (JP)
Corresponding author
Yuki, Michiko
ORCID
Venue
Patient Education and Counseling
Publisher
Elsevier BV
Published
2020-06
Volume
103
Issue
6
Pages
1070-1081
ISSN
0738-3991 (ISSN-L)
DOI
10.1016/j.pec.2019.12.011
OpenAlex
W2995669168
Cited by
88
References
62
Citations by year
2026: 16 · 2025: 16 · 2024: 20 · 2023: 12 · 2022: 14 · 2021: 7 · 2020: 2
FWCI
0.95
Type
journal article
Language
en
Open access
Licence
Locations
  • Patient Education and Counseling (publishedVersion, cc-by-nc-nd)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Health Professions › General Health Professions › Ethics in medical practice
Keywords
surrogate decision-making, older adults, end-of-life care, placement decisions, family support, advance care planning
MeSH terms
Aged, Communication, Decision Making, Family, Humans, Advance Directives, Caregivers, Qualitative Research

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