Study: Physicians who listen make a difference
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 concerns about their loved ones, according to a new study.
Published in the March 21 issue of the Annals of Internal Medicine, the study is the first to show that empathetic doctors can help reduce the enormous emotional and psychological burdens shouldered by millions of caregivers — the spouses, children, and siblings who provide an array of services for people dying of illnesses such as emphysema, cancer, Alzheimer’s disease, liver disease, and kidney failure.
The study documents the high economic toll that caring for terminally ill patients can take on caregivers, adding to their emotional and physical stress. For the first time, it suggests an effective method for alleviating some of these burdens.
Physicians of terminally ill patients who show compassion and empathy to caregivers can make an important difference in their mental health, the study asserts. Researchers interviewed 893 caregivers of 988 patients. Among the caregivers, 35% said the patients they cared for had high levels of need, including transportation, nursing care, homemaking, and personal care.
The data suggested that caregivers for dying patients with high care needs whose doctors listened to them were less likely than other caregivers to be depressed (28%), compared with those whose doctors did not listen (42%). They also were less likely to report that their caregiving responsibilities interfered with their personal lives (32% vs. 48%).
Nearly half of terminally ill patients with high care needs reported that medical care costs created economic hardships for their families, according to Ezekiel J. Emanuel, MD, chair of the National Institutes of Health’s department of clinical bioethics at the Warren G. Magnuson Clinical Center and lead author of the study. It is not unusual, Emanuel wrote, 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.
For the 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, AL; Brooklyn, NY; Mesa County, CO; St. Louis; Tucson, AZ; and Worcester, MA. 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 the study. More than 90% 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.
"These families need help, and doctors can do a lot to provide it," Emanuel wrote, "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 in a series of eight papers in the Commonwealth-Cummings Project on the End of Life, an effort to expand the nation’s understanding of the dying experience and finding ways to improve it.
Karen Davis, president of the Commonwealth Fund in New York City, says the 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 says. "We need to look at the adequacy of current insurance coverage in the event of serious illness."
Listening has a direct bearing
Listening is challenging for many doctors, but it has a direct bearing on how patients feel about the quality of their care, the authors wrote. Although doctors are starting to become more aware of patients’ end-of-life needs, they might not be as cognizant of the needs of caregivers, according to co-author Linda L. Emanuel, MD, PhD, vice president of the Institute of Ethics at the American Medical Association.
"Caregivers are critical supports for terminally ill patients," she wrote. "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. 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). Linda Emanuel heads the EPEC Project.
"Family caregivers of terminally ill patients are shouldering a huge emotional and financial burdens," says Charles Halpern, president of the Nathan Cummings Foundation in New York City. "This study provides needed direction for supporting these people. We have a responsibility to care for those who care."
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