Oct. 5, 2000 CHICAGO - Despite the progress made by the hospice and palliative care movement in the care of the terminally ill and helping patients achieve a "good death," a tragic gap exists between the care that dying people want and the care they receive.
The reason for this gap, according to a Northwestern University bioethicist, is that there is no framework for public policy and clinical interventions relative to end-of-life care that also includes patients' perspectives on what it means to "die well."
To establish such a framework, Linda L. Emanuel, M.D., professor of medicine at Northwestern University Medical School, and colleagues compiled data from personal experiences of end-of-life care from nearly 1,000 patients who had less than six months to live. Over 50 percent of the patients had cancer; others had heart disease, chronic obstructive lung disease or other conditions.
Results of the group's study, the first to use first-hand subjective information from dying patients, were published in an article in the September-October issue of the Journal of Palliative Care Medicine.
"One of the most important findings of our study was that caring for a dying patient can be an extraordinary opportunity for personal growth for family and loved ones, " Emanuel said.
The researchers also found that terminally ill patients who have good communication with their physicians and/or nurses are more likely to be accepting of their death, feel more connected to family and friends and have less psychological stress.
In addition, spirituality/religiousness were associated with a sense of purpose; patients who reported more personal acceptance of their death were likely to have higher measures in both spirituality and sense of purpose.
Finally, personal acceptance was higher among patients whose principal clinician was a nurse as opposed to a physician. Women and minorities were more likely to report good patient-clinician relationships. Female patients and younger patients also reported more psychological distress.
Emanuel, who directs the Interdisciplinary Program on Professionalism and Human Rights at the Medical School and the Project to Educate Physicians in End of Life Care (EPEC), believes that the results of this study may help guide the development policy and clinical interventions in terminally ill patients.
"If we think of the care that we would like to have, perhaps we have a chance of getting the policy and medical care right," Emanuel said.
"Then, perhaps, we will afford ourselves and others an all-important opportunity to be a part of civilized humanity, allowing ourselves and others to leave this world as appreciated, dignified individuals not wracked by physical suffering or assaulted by social or psychological diminution," she said.
Emanuel's co-researchers on this study were Hillel R. Alpert, Vital Science & Health, Newtonville, Mass.; DeWitt C. Baldwin, Jr., M.D., Institute for Ethics, American Medical Association, Chicago; and Ezekiel J. Emanuel, M.D., Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, Md.
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