Reconceptualizing advance care planning from the patient's perspective.

BACKGROUND: Traditional academic assumptions about advance care planning (ACP) include the following: (1) the purpose of ACP is preparing for incapacity; (2) ACP is based on the ethical principle of autonomy and the exercise of control; (3) the focus of ACP is completing written advance directive forms; and (4) ACP occurs within the context of the physician-patient relationship. These assumptions about ACP have never been empirically validated.

OBJECTIVE: To examine the traditional academic assumptions by exploring ACP from the perspective of patients actively participating in the planning process.

METHODS: Forty-eight patients (30 men and 18 women with a mean age of 48.3 years) who were undergoing hemodialysis were interviewed 6 months after receiving an advance directive form. Their experience of ACP was noted in interviews that were audiotaped, transcribed, and analyzed.

RESULTS: The participants said that their purpose in ACP was to prepare for death and dying, and their underlying goals included the exercise of control and an attempt to relieve burdens placed on loved ones. Advance care planning was viewed as a social process, and completing a written advance directive form was often regarded as unnecessary. Participants often involved close loved ones, but physicians infrequently.

CONCLUSIONS: The traditional academic assumptions are not fully supported from the perspective of patients involved in ACP. The patients we interviewed stated that (1) the purpose of ACP is not only preparing for incapacity but also preparing for death; (2) ACP is not based solely on autonomy and the exercise of control, but also on personal relationships and relieving burdens placed on others; (3) the focus of ACP is not only on completing written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-patient relationship but also within relationships with close loved ones.