A Consensus-Based Approach To Providing Palliative Care to Patients Who Lack Decision-Making Capacity

A Consensus-Based Approach To Providing Palliative Care to Patients Who Lack Decision-Making Capacity

Jason H.T. Karlawish, MD;
Timothy Quill, MD;
Diane E. Meier, MD; and
for the ACP-ASIM End-of-Life Care Consensus Panel

Abstract

Making palliative care decisions for a patient who lacks decision-making capacity presents several challenges. Other people, such as family and caregivers, must choose for the patient. The goals and values of these decision makers may conflict with those of each other and with those of the patient, who now lacks the capacity to participate in the decision. This paper presents a case study of a patient with severe Alzheimer disease who has two common clinical problems: neurogenic dysphagia and aspiration pneumonia. The case study describes a consensus-based decision-making strategy that keeps what is known about the patient's wishes and values in the foreground but also expects guidance from the physician and elicits input from family members and other people who care for and have knowledge about the patient. The steps of this process, including key clinical prompts and potential transition statements, are outlined and described. The overall goal of the case commentary is to demonstrate that physicians can guide a highly emotional and personal process in a structured manner that has meaning for the patient, family, physician, and other caregivers.

Article and Author Information

This paper was written by Jason H.T. Karlawish, MD; Timothy Quill, MD; and Diane M. Meier, MD, and was developed for the American College of Physicians-American Society of Internal Medicine (ACP-ASIM) End-of-Life Care Consensus Panel. Members of the ACP-ASIM End-of-Life Care Consensus Panel were Bernard Lo, MD (Chair); Janet Abrahm, MD; Susan Block, MD; William Breitbart, MD; Ira R. Byock, MD; Kathy Faber-Langendoen, MD; Lloyd W. Kitchens Jr., MD; Paul Lanken, MD; Joanne Lynn, MD; Diane Meier, MD; Timothy Quill, MD; George Thibault, MD; and James Tulsky, MD. Primary staff to the Panel were Lois Snyder, JD (Project Director); Jason Karlawish, MD; and Karine Morin, LLM. This paper was reviewed and approved by the Ethics and Human Rights Committee and the Education Committee. Members of the Ethics and Human Rights Committee were Risa Lavizzo-Mourey, MD (Chair); Joanne Lynn, MD; Richard J. Carroll, MD; David A. Fleming, MD; Steven H. Miles, MD; Gail J. Povar, MD; Susan H. Thompson, MD; James Tulsky, MD; Alan L. Gordon, MD; Siang Y. Tan, MD; and Lee J. Dunn Jr., LLM. Members of the Education Committee were Faroque A. Kahn, MD (Chair); Michael A. Ainsworth, MD; John B. Bass, MD; John R. Feussner, MD; Donald E. Girard, MD; John J. Hoesing, MD; Faith T. Fitzgerald, MD; Alphonso Brown, MD; Jerome H. Carter, MD; Sandra Adamson Fryhofer, MD; William J. Hall, MD; Rodney Hornbake, MD; Christine S. Hunter, MD; Mary E. Moore, MD; and Kurt Kroenke, MD. This paper was approved by the Board of Regents on 12 July 1998.
Acknowledgment: The American College of Physicians-American Society of Internal Medicine thanks the Greenwall Foundation for its support of the development of this paper.
Grant Support: Dr. Karlawish is supported by a Brookdale Foundation National Fellowship and National Institute on Aging grant 1K01-AG00931-01. Dr. Meier is an Open Society Institute Faculty Scholar of the Project on Death in America.
Requests for Reprints: Lois Snyder, JD, Center for Ethics and Professionalism, American College of Physicians-American Society of Internal Medicine, 190 N. Independence Mall West, Philadelphia, PA 19106.
Current Author Addresses: Dr. Karlawish: Institute on Aging, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, PA 19104.
Dr. Quill: The University of Rochester and the Genesee Hospital, Department of Medicine, 224 Alexander Street, Rochester, NY 14607.
Dr. Meier: Departments of Geriatrics and Medicine, Mount Sinai School of Medicine, 1 Gustave L. Levy Place, Box 1070, New York, NY 10029.