How do clinicians prepare family members for the role of surrogate decision-maker?
Abstract
Purpose: Although surrogate decision-making (SDM) is prevalent in intensive care units (ICUs) and concerns with decision quality are well documented, little is known about how clinicians help family members understand the surrogate role. We investigated whether and how clinicians provide normative guidance to families regarding how to function as a surrogate. Subjects and methods: We audiorecorded and transcribed 73 ICU family conferences in which clinicians anticipated discussing goals of care for incapacitated patients at high risk of death. We developed and applied a coding framework to identify normative statements by clinicians regarding what considerations should guide surrogates’ decisions, including whether clinicians explained one or more of Buchanan and Brock’s three standard principles of SDM to family members. Results: Clinicians made at least one statement about how to perform the surrogate role in 24 (34%) conferences (mean of 0.83 statements per conference (1.77; range 0–9)). We observed three general types of normative guidance provided to surrogates, with some conferences containing more than one type of guidance: counselling about one or more standard principles of SDM (24% of conferences); counselling surrogates to make decisions centred on the patient as a person, without specifying how to accomplish that (14% of conferences); and counselling surrogates to make decisions based on the family’s values (8% of conferences). Conclusions: Clinicians did not provide normative guidance about the surrogate role in two-thirds of family conferences for incapacitated patients at high risk for death. When they did, clinicians’ guidance was often incomplete and sometimes conflicted with standard principles of SDM. Future work is needed to understand whether providing explicit guidance on how to perform the surrogate role improves decision-making or mitigates surrogates’ psychological distress.
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Clinicians often fail to adequately elicit patient treatment preferences, provide guidance about the surrogate's role, disclose likely long-term outcomes, and discuss the option of comfort-focused care.
“clinicians often fail to adequately elicit patient treatment preferences, provide guidance about the surrogate’s role, disclose likely long-term outcomes, and discuss the option of comfort-focused care (7–13).”
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- Authors
- Cunningham, T. V., Scheunemann, L. P., Arnold, R. M., & White, D.
- Affiliations
- Kaiser Permanente West Los Angeles Medical Center (US)
- University of Pittsburgh (US)
- Corresponding author
- Cunningham, Thomas V
- Venue
- Journal of Medical Ethics
- Publisher
- BMJ
- Published
- 2017-07-17
- Volume
- 44
- Issue
- 1
- Pages
- 21-26
- ISSN
- 0306-6800 (ISSN-L)
- 1473-4257
- OpenAlex
- W2734450279
- Cited by
- 45
- References
- 21
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 3 · 2023: 2 · 2022: 10 · 2021: 8 · 2020: 8 · 2019: 6 · 2018: 4
- FWCI
- 4.64
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Medical Ethics (publishedVersion)
- PubMed (publishedVersion)
- HighWire Press Open Archive (submittedVersion)
- Funders
- Jewish Health Care Foundation
- Arthur Vining Davis Foundations
- National Heart, Lung, and Blood Institute
- Greenwall Foundation
- National Institutes of Health
- National Institute on Aging
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › Radiological and Ultrasound Technology › Family and Patient Care in Intensive Care Units
- Health Sciences › Health Professions › General Health Professions › Ethics in medical practice
- Keywords
- surrogate decision-making, family meetings, intensive care unit, normative guidance, goals of care, clinician-family communication, patient-centered decision-making, family values, end-of-life decisions
- MeSH terms
- Adult, Aged, Communication, Counseling, Decision Making, Family, Female, Humans, Intensive Care Units, Male, Middle Aged, Professional-Family Relations, Stress, Psychological, Terminal Care, Proxy, Third-Party Consent, Young Adult
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