Dialysis Patients' Preferences for Family-Based Advance Care Planning

Dialysis Patients' Preferences for Family-Based Advance Care Planning

From West Virginia University, Morgantown, West Virginia; University of Rochester School of Medicine, Rochester, New York; and Purdue University, West Lafayette, Indiana.

Abstract

Background: Most patients do not participate in advance care planning with physicians.

Objective: To examine patients' preferences for involving their physicians and families in advance care planning.

Design: Face-to-face interviews with randomly selected patients.

Setting: Community-based dialysis units in one rural and one urban region.

Participants: 400 hemodialysis patients.

Measurements: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care.

Results: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001).

Conclusion: Most patients want to include their families more than their physicians in advance care planning.

Article and Author Information

Disclaimer: The opinions expressed are those of the authors and do not necessarily represent those of the supporting foundation.
Acknowledgments: The authors thank Amy Breakey, Lisa Kluth, Rachel Newcome, and LaSandra Ward for interviewing the patients, and the dialysis units that allowed the interviews to be conducted. The authors also thank Choice in Dying, Inc., for reviewing the accuracy of questions about state laws; Peter A. Singer, MD, for helpful comments on an earlier draft of the manuscript; and Cynthia F. Jamison and Linda D. McMillen for secretarial assistance.
Grant Support: By a grant from the Greenwall Foundation.
Requests for Reprints: Alvin H. Moss, MD, Center for Health Ethics and Law, Robert C. Byrd Health Sciences Center, West Virginia University, Box 9022, Morgantown, WV 26506-9022; e-mail, amoss{at}wvu.edu.
Current Author Addresses: Dr. Hines: Communication Studies Department, Box 6293, West Virginia University, Morgantown, WV 26506.
Drs. Glover and Moss: Center for Health Ethics and Law, Robert C. Byrd Health Sciences Center, West Virginia University, Box 9022, Morgantown, WV 26506-9022.
Dr. Holley: Nephrology Unit, Box 675, University of Rochester Medical Center, 601 Elmwood Avenue, Rochester, NY 14642.
Dr. Babrow: Communication Department, Purdue University, West Lafayette, IN 47907.
Ms. Badzek: School of Nursing, Box 9610, Robert C. Byrd Health Sciences Center, West Virginia University, Morgantown, WV 26506.