RECONCEPTUALIZING ADVANCE CARE PLANNING FROM THE PATIENTS PERSPECTIVE

Background: Traditional academic assumptions about advance care planni ng (ACP) include the following: (1) the purpose of ACP is preparing fo r incapacity; (2) ACP is based on the ethical principle of autonomy an d 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 aca demic assumptions by exploring ACP from the perspective of patients ac tively participating in the planning process.Methods: Forty-eight pati ents (30 men and 18 women with a mean age of 48.3 years) who were unde rgoing hemodialysis were interviewed 6 months after receiving an advan ce directive form. Their experience of ACP was noted in interviewed th at were audiotaped, transcribed, and analyzed. Results: The participan ts said that their purpose in ACP was to prepare for death and dying, and their underlying goals included the exercise of control and an att empt to relieve burdens placed on loved ones. Advance care planning wa s viewed as a social process, and completing a written advance directi ve form was often regarded as unnecessary. Participants often involved close loved ones, but physicians infrequently. Conclusions: The tradi tional academic assumptions are not fully supported from the perspecti ve of patients involved in ACP. The patients we interviewed stated tha t (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 completi ng written advance directive forms but also on the social process; and (4) ACP does not occur solely within the context of the physician-pat ient relationship but also within relationships with close loved ones.