People who care for terminally ill patients say that they feel less depressed and better able to cope with their lives when they can talk to a doctor who simply listens to their problems and their concerns about their loved ones, according to a new study released today. The study, published in today's Annals of Internal Medicine, is the first to show that empathetic doctors can help reduce the enormous emotional and psychological burdens shouldered by millions of caregivers. Nearly all caregivers in this country are family members -- mostly wives, daughters, and sisters -- who provide an array of services for people dying of illnesses such as emphysema, cancer, Alzheimer's disease, liver disease, and kidney failure. This study documents the high economic toll that caring for terminally ill patients can take on caregivers – adding to their emotional as well as their physical stress. And, for the first time, it suggests an effective method for alleviating some of these burdens. Indeed, doctors of terminally ill patients who show compassion and empathy to caregivers can make an important difference in their mental health. The study researchers interviewed 893 caregivers of 988 patients. Among the caregivers, 35 percent said the patients they cared for had high levels of need for help with transportation, nursing care, homemaking, and personal care. The data showed that caregivers for dying patients with high care needs whose doctors listened to them were less likely than other caregivers to be depressed (28 percent, compared with 42 percent). They were also less likely to report that their caregiving responsibilities interfered with their personal lives (32 percent, compared with 48 percent). Lead study investigator Ezekiel J. Emanuel, M.D., noted that caregivers frequently have tremendous financial pressures that add to their stress. Nearly half of terminally ill patients with high care needs reported that medical care costs created economic hardships for their families. It is not unusual, Dr. Emanuel said, for family members to have to sell some of their assets, take out a loan or mortgage, or obtain another job to pay for a dying relative's medical care. "These families need help – and doctors can do a lot to provide it," said Dr. Emanuel, who is chair of the Department of Clinical Bioethics, Warren G. Magnuson Clinical Center at the National Institutes of Health. "This study indicates that doctors have a pivotal role to play by listening better to caregivers and providing them with support at a stressful time in their lives." The study is one of a series of eight papers in the Commonwealth-Cummings Project on the End of Life, an unprecedented effort to expand the nation's understanding of the dying experience and find ways to improve it. The Commonwealth-Cummings Project is directed by Dr. Emanuel and Linda L. Emanuel, M.D., vice president of the Institute for Ethics, American Medical Association (AMA). Karen Davis, president of the Commonwealth Fund, noted that the Annals study also carries important implications for insurance coverage of terminal illness. "The findings of high out-of-pocket costs for medical bills and medications to care for dying patients point to serious gaps in health plan policies," she said. "We need to look at the adequacy of current insurance coverage in the event of serious illness." Listening is a challenging role for many doctors, but it also has been shown to have a direct bearing on how patients feel about the quality of their care. In addition, Dr. Linda Emanuel, a co-author of the Annals paper, noted that although doctors are starting to become more aware of end-of-life needs for patients, they might not be as cognizant of the needs of their caregivers. "Caregivers are critical supports for terminally ill patients," she said. "But they are also subject to great stress. Heavy caregiving responsibilities often result in less time with families and friends, conflicts at work, and financial insecurity. "Many physicians are not aware of how much they can accomplish by giving family members and other caregivers the opportunity to air their thoughts and feelings about the challenges they face," she added. "It can be a huge relief for them, allowing them to pursue their responsibilities with renewed energy. And, in the end, patients benefit when their caregivers feel less stressed." The researchers said that physicians need more training and education in end-of-life-care, including listening. One effort to provide physicians with the basic knowledge and skills to care for dying patients is an initiative at the AMA's Institute for Ethics called Education for Physicians on End-of-Life Care (EPEC). Dr. Linda Emanuel heads the EPEC Project. "Family caregivers of terminally ill patients are shouldering huge emotional and financial burdens," said Charles Halpern, president of the Nathan Cummings Foundation. "This study provides needed direction for supporting these people. We have a responsibility to care for those who care." For the caregiving study, terminally ill adults and their primary caregivers were interviewed between March 1996 and March 1997. Patients and caregivers in the study came from six randomly selected cities – Birmingham, Ala.; Brooklyn, N.Y.; Mesa County, Colo.; St. Louis, Mo.; Tucson, Ariz., and Worcester, Mass. Patients were located by referral from their physicians. The most common illnesses among them were cancer, heart disease, and chronic lung disease. (Patients with HIV/AIDS were ineligible for this study.) More than 90 percent of patients were living at home; however, patients who were hospitalized or living in a nursing home or a residential hospice were included in the study. Additional co-authors of the Annals of Internal Medicine article are Diane L. Fairclough of the Center for Research Methodology and Biometrics, AMC Cancer Research Center, Denver; and Julia Slutsman, Department of Health Policy and Management, School of Hygiene and Public Health, Johns Hopkins University, Baltimore. Future Commonwealth-Cummings studies will explore issues such as euthanasia and suicide, the impact of managed care on terminally ill patients, pain management among the dying, and the inner life and spirituality of dying patients. The Commonwealth Fund, based in New York, helps Americans live healthy and productive lives. Its four current national program areas are improving health care services, bettering the health of minority Americans, advancing the well-being of elderly people, and developing the capacities of children and young people. The Nathan Cummings Foundation, also of New York, is rooted in the Jewish tradition and committed to democratic values, including fairness, diversity, and community. The Foundation works to improve the quality of life at its beginning and at its end by supporting humane, patient-centered care that provides comfort and caring, as well as cure.
