Attitudes of relatives of patients in intensive care and emergency departments to surrogate consent to research on incapacitated participants

Abstract

Background: When potential research participants are incapable of providing consent, it is common for clinicians and researchers to approach family members, attempting to ascertain that person's wishes. Where legally recognised, surrogate consent may also then be provided by relatives for therapy or research involvement. This practice is widely accepted as acknowledging and maintaining patient autonomy, yet there are few data on acceptability of this to the community, or on the accuracy of surrogate decisions.

Methods: We conducted a questionnaire-based survey of 283 people in the waiting rooms of the emergency and intensive care departments of a tertiary hospital in September 2006 to evaluate attitudes to critical care research, willingness to participate if incapacitated, and acceptability of surrogate consent in these circumstances.

Results: 283 people were approached with the questionnaire, with 185 people fully completing and returning them: 17% strongly indicated agreement to research participation if they were critically ill, with 25% indicating they would refuse. Only 26% of respondents thought it acceptable that a relative provide consent to research participation on their behalf. Demographic factors did not influence responses, but views of respondents that participation in research was beneficial to participants correlated with an increased willingness to participate themselves.

Conclusions: From our questionnaire, it appears that willingness to participate in research is less than we expected. Surrogate decision-making and the provision of surrogate consent to research was acceptable to only 26% of respondents.