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Reconceptualizing advance care planning from the patient's perspective
P A Singer1, D K Martin, J V Lavery
1University of Toronto Joint Centre for Bioethics, Department of Medicine, University of Toronto and Toronto Hospital, Ontario, Canada. petersinger@utoronto.ca
Archives of Internal Medicine
|May 7, 1998
Summary
Patients view advance care planning (ACP) as preparation for death and a social process, not just for incapacity or solely physician-directed. Their goals include relieving loved ones of burdens, challenging traditional assumptions about ACP.
Area of Science:
- Medical Ethics
- Patient-Centered Care
- Sociology of Health
Background:
- Traditional academic assumptions posit advance care planning (ACP) focuses on incapacity, autonomy, written forms, and physician-patient relationships.
- These assumptions lack empirical validation from patient perspectives.
Purpose of the Study:
- To investigate traditional academic assumptions of ACP.
- To explore ACP experiences from the viewpoint of patients actively engaged in the planning process.
Main Methods:
- Qualitative interviews with 48 hemodialysis patients 6 months post-receiving an advance directive form.
- Interviews were audiotaped, transcribed, and analyzed to capture patient experiences.
Main Results:
- Patients perceive ACP's purpose as preparing for death and dying, alongside managing incapacity.
- Key goals include exercising control and alleviating burdens on loved ones.
- ACP is viewed as a social process, with written forms often deemed unnecessary.
- Patients frequently involve close loved ones, while physician involvement is less common.
Conclusions:
- Traditional academic assumptions about ACP are not fully supported by patient experiences.
- Patient-centered ACP encompasses preparing for death, relational aspects, and burden relief.
- The social dimension and involvement of loved ones are crucial components of ACP.
- ACP extends beyond the physician-patient dyad to include significant relationships with family and friends.