Deciding on behalf of others: a population survey on procedural preferences for surrogate decision-making

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=9.3to 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.