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Observations From People With HIV

Douglas K. Martin, PhD; Elaine C. Thiel, BScN; Peter A. Singer, MD, MPH, FRCPC

Arch Intern Med. 1999;159:86-92.

Background  Although theoretical concepts from ethics and law have been applied, there is no conceptual model of advance care planning rooted in the perspective of individuals engaged in it.

Objective  To develop a conceptual model of advance care planning by examining the perspectives of individuals engaged in it.

Methods  In this qualitative research, we studied 140 individuals with human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome who were engaged in advance care planning. Respondents' experience with and opinions about advance care planning were noted in interviews that were audiotaped, transcribed, and analyzed.

Results  The primary goal of advance care planning was to prepare for death, which entailed facing death, achieving a sense of control, and strengthening relationships.

Conclusions  We have developed a conceptual model of advance care planning rooted in the perspectives of individuals engaged in it. The model has implications for theory, research, and practice regarding end-of-life care.

From the University of Toronto Joint Centre for Bioethics (Drs Martin and Singer), the Department of Medicine, University of Toronto (Dr Singer), Institute for Clinical Evaluative Sciences (Ms Thiel), and The Toronto Hospital (Dr Singer), Toronto, Ontario.

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