Objectives To assess people’s procedural preferences for making medical surrogate decisions, from the perspectives of both a potential surrogate and an incapacitated patient.
Design Computer-assisted telephone interviews. Respondents were randomly assigned either the role of an incapacitated patient or that of a potential surrogate for an incapacitated family member. They were asked to rate six approaches to making a surrogate decision: patient-designated surrogate, discussion among family members, majority vote of family members’ individual judgements, legally assigned surrogate, population-based treatment indicator and delegating the decision to a physician.
Setting Germany and German-speaking and French-speaking parts of Switzerland.
Participants 2010 respondents were quota sampled from a panel (representative for the German and German-speaking and French-speaking Swiss populations, respectively, in terms of age, sex and regions).
Main outcome measures Endorsement of each approach (rated on a scale from 1 to 10). Degree to which preferences overlap between the perspective of potential surrogates and potential patients.
Results Respondents’ endorsement of the six different approaches varied markedly (from Mdn=9.3 to Mdn=2.6). Yet the preferences of respondents taking the perspective of incapacitated patients corresponded closely with those of respondents taking the perspective of a potential surrogate (absolute differences ranging from 0.1 to 1.3). The preferred approaches were a patient-designated surrogate (Mdn=9.3) and all family members making a collective decision by means of group discussion (Mdn=9.3). The two least-preferred approaches were relying on a statistical prediction rule (Mdn=3.0) and delegating the decision to a physician (Mdn=2.6).
Conclusions Although respondents taking the perspective of an incapacitated patient preferred a patient-designated surrogate, few people have designated such a surrogate in practice. Policy-makers may thus consider implementing active choice, that is, identifying institutional settings in which many people can be reached (eg, when obtaining a driver’s licence) and requesting them to complete advance directives and to designate a specific surrogate. Moreover, potential patients and surrogates alike highly valued shared surrogate decisions among family members. Policy-makers may consider acknowledging this possibility explicitly in future legislation, and caregivers and physicians may consider promoting shared surrogate decisions in practice.
- substituted judgement
- procedural preferences
- population survey
- advance directives
- living will
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Contributors RF, SMH and RH designed the study. RF performed the analyses. RF wrote the manuscript and SMH and RH provided critical revisions. RF is the guarantor.
Funding This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent Not required.
Ethics approval As this survey was a non-clinical study and did not involve any patients, it did not classify as requiring in-depth evaluation and approval by a cantonal review board according to Swiss federal law. The “Ethikkommission Nordwest- und Zentralschweiz”, EKNZ (i.e., the successor board to the “Ethikkommission beider Basel”, EKBB, which was operating at the time of the study) has subsequently issued a declaration of no objection.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The full dataset is available at http://osf.io/5aa4b.
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