Karen E. Steinhauser, PhD; Elizabeth C. Clipp, PhD, MS, RN; Maya McNeilly, PhD; Nicholas A. Christakis, MD, PhD, MPH; Lauren M. McIntyre, PhD; James A. Tulsky, MD
Disclaimer: The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.
Acknowledgments: The authors thank Ginette Nachman for transcription support; Aileen Ward for focus group facilitation; and the 75 patients, family members, and health care providers who graciously shared their experiences of care at the end of life.
Grant Support: By the Veterans Affairs Health Services Research and Development (96-006). Dr. Tulsky and Dr. Christakis were Project on Death in America Soros Faculty Scholars. Dr. Tulsky is supported by a Veterans Affairs Health Services Research Career Development Award and a Robert Wood Johnson Generalist Physician Faculty Scholars Award.
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Current Author Addresses: Drs. Steinhauser, Clipp, McIntyre, and Tulsky: Veterans Affairs Medical Center (152), 508 Fulton Street, Durham, NC 27705.
Dr. McNeilly: Duke University Medical Center, Box 3003, Durham, NC 27710.
Dr. Christakis: University of Chicago, 5841 South Maryland Avenue, MC2007, Chicago, IL 60637.
Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants—including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members—were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice.
Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying.
Although there is no “right” way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.
Table 1. Focus Group Composition
Table 2. Characteristics of Focus Group Participants
Table 3. Components of a Good Death
His disease was very widespread. One of the interns or residents said, “We don't want you on morphine. You're going to get addicted.” I said, “You must be joking. This guy is having pain, and he's not going to make it out of the hospital.” He stayed on the surgical service and he died in 4 days, in pain.
This is my medical problem. Sometimes I don't want to stay on the rigid schedule, and he [the physician] would say, “I would like for you to stay on that, but you are the manager of your ship. You decide how fast you want to paddle, if you want to go backwards, sideways, or make a 360° turn.”
I had never talked to her about end-of-life issues. I'm trying to communicate with my family over the phone. “What do we do? She's intubated, her labs are worse.” The doctor said, “We really don't think that she's going to make it, and we have to consider withdrawing life support.” I said, “I'm sorry, but that's not a decision I can make.”
This person had mets everywhere. I explained to him, “There's nothing that's going to bring your bones back. In this situation, somebody would do CPR [cardiopulmonary resuscitation]. That involves pumping on your chest, and it would likely fracture your bones.” I was very simple about it. I said, “The alternative, which I would recommend, is we make sure we give you enough pain medication that you will not suffer.” I find that the more up-front I am, most people are appreciative of that.
I can't tell you how many times, working in the emergency room, [that I saw] families [take a patient home]; this patient was going to die at home. And, when the last breath came, the families panicked. They brought the patient into the emergency room and went through the whole process [resuscitation]. Preparing the family, assessing what they actually know, and figuring out what you have to teach them is essential.
When I was in nursing school, my older sister was killed in a car accident. I never had to think about death before that. It sent me on a personal quest. I developed a comfort with it that sometimes made it very frustrating to work with people who didn't have that understanding, who still looked at death as the enemy. You all know which attendings can and can't go in and talk to the patients because it's too uncomfortable.
He got home, and they got him out of the ambulance. I remember him saying, “Oh, can I wait just a minute, to remember the sunshine.” This for somebody who hadn't seen the sun in … It was almost like we had a party that evening. Everybody was there, and we sang songs. He died that night, at home, and everybody was there.
They asked to bring in their religious representative. It was important to them that the patient be completely bathed as she was dying as well as when she was dead. I had some weird looks from physicians who were saying, “You're wasting your time. This wasn't an effective intervention.” But it was, because when all was said and done, they [the family] had accepted it.
They [patients] have the ability to help someone else through me. One fellow liked to go out for rides. He couldn't walk around very well, but he invited another patient to come out. She was very debilitated too. So, the three of us would drive around the community. As debilitated as some patients get, they're still capable of helping someone else or making someone else laugh.
The residents always approached my father as if he was a person and there weren't any divisions between them. They didn't come in and say, “I'm Doctor so and so.” There wasn't any kind of separation or aloofness. They would sit right on his bed, hold his hand, talk about their families, his family, golf, and sports.
That last day I saw him in the emergency room, he was looking at me with those roving eyes and gasping for breath. I leaned over him and stroked his hair. He looked at me and said, “How's that new house of yours?” I said, “I'm not really moved in.” And he said, “You make sure you decorate it nicely.” It was a very personal interchange. He was dying, and his last interaction with me was as a person, not as a doctor.
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Steinhauser KE, Clipp EC, McNeilly M, et al. In Search of a Good Death: Observations of Patients, Families, and Providers. Ann Intern Med. 2000;132:825–832. doi: https://doi.org/10.7326/0003-4819-132-10-200005160-00011
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Published: Ann Intern Med. 2000;132(10):825-832.
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