Study Tries to Define Good Death

N E W   Y O R K, Nov. 14, 2000 -- A “good death” is defined differently by doctors and patients, which means some physicians may be ignoring spiritual issues patients consider important, a new study finds.

Responding to a questionnaire about the 44 attributes important in defining a good death, more than 70 percent of 1,426 physicians, care providers, seriously ill patients and recently bereaved family members across the country agreed being treated as a “whole person” was essential to a “good death.”

The definition, however, of treating the whole person varied widely, with patients placing more importance on spiritual and psychological issues than physicians. Patients consistently said mental awareness, not being a burden and coming to peace with God were critical to them — issues that did not register as much with doctors.

The study is being published in the Nov. 15 issue of the Journal of the American Medical Association, which focuses on end-of-life care.

Concerned that physicians focus only on the medical aspects of care without acknowledging the emotional and spiritual needs of dying patients and their families, Dr. Karen Steinhauser a health scientist at the Veterans Administration Medical Center and assistant research professor at Duke University Medical Center, in Durham, N.C. conducted the study to reveal what people want when they die.

“If we want to help people die better, we have to know what better is,” Steinhauser said.

Besides stressing a sense of psychological awareness while dying, study participants said pain management, preparation for death and having a sense of completion were important to them.

Dr. Timothy Daaleman, an associate professor at the Center on Aging at the University of Kansas Medical Center in Kansas City, whose commentary on spirituality as part of end-of-life treatment also appears in the issue, agrees with Steinhauser that American physicians “over-medicalize” death, saying, “Physicians have an important role beyond dispensing medical information.”

Defining a Doctor’s Role

Still, Daalemaan admits, defining the extent of that role is difficult. In his commentary, Daaleman asks, “Who is responsible for assessing and meeting the spiritual and religious needs of dying patients: physicians, nurses, social workers, psychologists, or clergy and health-care chaplains?”

It is a question with no single answer. Steinhauser’s team found only a slight majority felt it was important to meet with a clergy member, have a chance to talk about the meaning of death, or to discuss spiritual beliefs with one’s physician. A large group of those surveyed apparently had different needs.

Because values differ from patient to patient, Steinhauser says, doctors need to receive more and better communication training that teaches them to understand patients’ values in order to provide them with the care they need. “Quality of care at end-of-life is a dynamic process that is negotiated and renegotiated,” Steinhauser says.

Dr. Maria Silveira, a senior fellow at Robert Wood Johnson’s Clinical Scholars Program at the University of Washington in Seattle, whose study on patients’ knowledge on end-of-life options is also included in the Nov. 15 issue of JAMA, says doctors welcome discussion on death — particularly if it’s initiated by patients. She suggests patients ask their doctors what kind of information they might need to know should a situation arise in which the patient cannot provide answers, adding, “Doctors need guidance too.”

Additionally, Silveira says patients should communicate what makes their life meaningful, who the important people in their life are, who they want involved in their care and what issues are important to them regarding their own end-of-life care. “Since death is something we all face,” she says, “Some of this stuff should be part of civic education.”

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