Patients, Families, Physicians and Other Care Providers Express Agreement and Diversity on What Constitutes a 'Good Death'
WASHINGTON, D.C. -- Managing pain and symptoms, communication with a physician, preparation for death, and the opportunity to achieve a sense of completion are all considered important to patients, their families, physicians, and caregivers. But other attributes of a "good death" differ in importance among the four groups, according to an article in the November 15 issue of The Journal of the American Medical Association (JAMA), a theme issue on end-of-life care.
Karen E. Steinhauser, Ph.D., of the Veterans Affairs Medical Center and Duke University Medical Center, Durham, N.C., and colleagues conducted a cross-sectional, stratified random national survey in March through August 1999. They questioned seriously ill patients, recently bereaved family members, physicians, and other care providers (nurses, social workers, chaplains, and hospice volunteers) about the importance of 44 attributes of quality at the end of life. Respondents were also asked to rank nine major attributes.
Dr. Steinhauser presented the article here today at a JAMA media briefing on end-of-life care.
The authors received responses from 1,462 study participants - 340 patients, 332 bereaved family members, 361 physicians, and 429 other care providers. Participants ranked the importance of each item on a 5-point scale, from "strongly disagree" to "strongly agree". Items for which more than 70 percent of respondents in all four groups chose "agree" or "strongly agree" were considered as having substantial agreement.
"Twenty-six items consistently were rated as being important across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a 'whole person'," the authors write.
"Eight items received strong importance ratings from patients but less from physicians, including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God," they continue.
"Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death," they write.
In a ranking of nine major attributes of end-of-life quality, freedom from pain was ranked most important among all four groups. Coming to peace with God and presence of family were ranked second or third in importance in all groups.
Given the strong public support for the hospice movement and its emphasis on home care, the authors were surprised to find dying at home was consistently ranked least important among the nine selected attributes. "The notion of dying at home may be romantic among health care professionals who want to provide a good death," they write. "However, as symptoms accelerate in the last 24 to 48 hours, some patients and families may feel overwhelmed by concerns about symptom control or a dead body in the home and, therefore, prefer a skilled care environment." For many patients, an appropriate goal is to allow them to die at home. However, this should not be assumed.
The authors conclude that while physicians tend to focus on physical aspects, patients and families also view the end of life with broader psychosocial and spiritual meanings. They urge physicians to recognize and address their patients' other needs.
"Physicians also should recognize that there is no one definition of a good death. Quality care at the end of life is highly individual and should be achieved through a process of shared decision making and clear communication that acknowledges the values and preferences of patients and their families," they write. "A challenge to medicine is to design flexible care systems that permit a variety of expressions of a good death."
(JAMA. 2000; 284:2476-2482)
Editor's Note: This work was supported by a VA Health Services Research and Development grant. Co-author James A. Tulsky, M.D., is supported by a VA Health Services Research Career Development Award and a Robert Wood Johnson Generalist Physician Faculty Scholars Award. Dr. Tulsky and co-author Nicholas A. Christakis, M.D., Ph.D., M.P.H., are Project on Death in America Soros Faculty Scholars. The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.