Community attitudes and knowledge about advance care directives

Abstract

Background: Patients and their physicians are increasingly being encouraged to discuss end-of-life decisions. The purpose of this study was to enhance understanding of the public's attitudes and knowledge about medical decision making and advance care directives.

Methods: Eight focus groups of community members discussed their understanding of and attitudes about advance care directives. Transcripts of these discussions were analyzed using coding categories created from the transcripts.

Results: Eighty-three people attended the focus groups. Most discussions of advance care directives involved family members in the setting of family or personal illness. Elderly persons commonly confused wills with living wills. Most who had given advance directives did so either to make others follow their wishes or to ease family burdens. Among the great variety of reasons for not using advance directives was a perceived lack of personal relevance, as well as conceptual, moral, and practical difficulties. Participants were divided about whether it was appropriate for physicians to initiate discussions about life-sustaining care with their patients. We discerned three themes affecting individuals' opinions about personal decision making about advance directives: (1) trust in family and the medical system, (2) need for control, and (3) knowledge about advance directives.

Conclusions: Although living wills are advocated by many authorities, and many of our participants endorsed their use, our participants also cited numerous cautions and impediments to their use. As the role of advance care directives changes, physicians will need to be aware of their patients' perceptions, as well as the legalities of these documents.