What constitutes a good death? With the devotion of an entire issue to this one question, the Journal of the American Medical Association (JAMA) has once again focused attention on a longstanding debate. However, current discussion is turning to psychiatry and what it can do, not only to improve the quality of end-of-life care, but also to help answer questions regarding a patient’s desire to die.
Modern medical advances and living conditions have allowed most people today to live longer despite having serious medical conditions and to an older age. Three-quarters of all those who die each year in the U.S. will have dealt with cancer, stroke, heart disease, obstructive lung disease, and/or dementia during the closing year of their lives. And that closing year will occur after the age of 65 for nearly 80 percent of all those who die in the year 2001. Prodded by increasing recognition of the impact of depression and anxiety disorders on the elderly and the chronically or terminally ill, many physicians are now consulting with psychiatrists, actively seeking advice on how to handle their patients’ deaths.
"The end of life," said Catherine D. DeAngelis, M.D., M.P.H., editor of JAMA, "no longer being a sudden event, is now full of choices shaped by services provided to the chronically ill by a vast array of health care providers."
The November 15, 2000, issue of JAMA, DeAngelis said at a media briefing, is intended as an educational resource for physicians, nurses, and other clinicians on the subject of end-of-life care.
In addition, a new column will appear bimonthly in JAMA titled "Perspectives on Care at the Close of Life." According to an editorial announcing the launch of the new column, "even years of experience caring for dying patients does not lessen the challenge of confronting the deaths of friends and family or, ultimately, oneself."
In the inaugural column, Timothy E. Quill, M.D., a professor of medicine, psychiatry, and medical humanities at the University of Rochester School of Medicine, presents the first case-based discussion of challenges in caring for patients with end-stage illness.
"No longer is end-of-life care simply about controlling pain—keeping a patient comfortable," Quill told Psychiatric News. "At the close of life, clinicians can learn to attend to patients’ hopes to have not only their symptoms controlled, but their emotions understood, their relationships supported, and their spiritual concerns addressed as well."
Psychiatry can, and should, he said, play an important role in consultations involving terminally ill patients.
Karen E. Steinhauser, Ph.D., an assistant research professor at Duke University Medical Center, and colleagues are the authors of "Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers," which was published in the November 15, 2000, issue of JAMA. They write that "patients’ emotional suffering at the end of life can be profound, yet physicians are too frequently ill equipped to address this suffering."
Steinhauser and her group surveyed nearly 350 terminal patients and more than 1,000 family members, physicians, and other health care providers closely associated with them. Forty percent of the patients were found to be at least slightly depressed, while an additional 28 percent were moderately to severely depressed. Thirty-five percent of family members reported being slightly depressed, while 22 percent were moderately to severely depressed. Interestingly, among physicians and other health care providers associated with the terminally ill patients, nearly 50 percent were noted to have slight to moderate depression.
When Steinhauser’s group asked the patients, their family members, and the care providers involved with them, including the physicians, to rate a list of attributes that were important at the end of life, being free of anxiety and fear was listed by at least 90 percent of each group. Being free of depression, however, wasn’t mentioned.
It was assumed, Steinhauser said at the JAMA press briefing, that depression was a given, under the circumstances—an attitude that needs to change, she emphasized.
In a related study, appearing in the December 13, 2000, issue of JAMA, William S. Brietbart, M.D., and his colleagues at Memorial Sloan-Kettering Cancer Center, reported that a crucial component of end-of-life care as well as the assisted-suicide debate, is a fundamental understanding of why a terminally ill patient wishes to die.
Breitbart, chief of psychiatry at Sloan-Kettering, studied the factors that contribute to a patient’s desire to hasten his or her own death. Depression and a sense of hopelessness were found to be as important as, if not more important than, physical pain in influencing a patient’s wish to die. The study used a new assessment tool, the 20-question Schedule of Attitudes Toward Hastened Death, developed by Breitbart and his colleagues.
"If patients have clinical depression as well as hopelessness," Breitbart said in a written statement, "the likelihood of desire for a hastened death increases dramatically. There was not one patient in our study who wished to die who did not fall into the ‘clinically depressed/high hopelessness’ group.
"Terminally ill patients," Brietbart continued, "may receive comprehensive care including pain management, but clinicians rarely address patients’ psychological needs in adequate ways, a crucial step in minimizing their desire for death. We have demonstrated the need to include psychiatric and psychosocial services as an essential part of end-of-life and palliative care."
Breitbart and his colleagues are now working with a four-year, $1.6 million grant from the National Institutes of Health to determine the effects of antidepressants on the desire to die in terminally ill patients with depression.
The JAMA articles are available online at www.jama.ama-assn.org by clicking on "Past Issues" and then the November 15, 2000, or December 13, 2000, issue. ▪