News From the End of Life

Study: Physicians who listen can 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 their concerns about their loved ones, according to a new study.

The study, published in the March 21 issue of the Annals of Internal Medicine, is the first study to show that show that empathetic doctors can help reduce the enormous emotional and psychological burdens shouldered by millions of caregivers — the wives, daughters, sisters, etc. — 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, as well as their physical stress. And, for the first time, it suggests an effective method for alleviating some of these burdens.

Compassion is a must

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 to those whose doctors did not listen (42%). They were also less likely to report that their caregiving responsibilities interfered with their personal lives (32%, compared to 48%).

Nearly half of terminally ill patients with high care needs reported that medical care costs created economic hardships for their families, said 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 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.

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 this 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 said, "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 effort to expand the nation’s understanding of the dying experience and finding ways to improve it.

Karen Davis, president of the Commonwealth Fund, said 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 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 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 end-of-life needs for patients, they might not be as cognizant of the needs of their caregivers, said 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 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. 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 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."

VOA to explore improved prison hospice

Volunteers of America has received a two-year $251,696 grant from The Robert Wood Johnson Foundation to help establish model end-of-life care programs for inmates confined in the nation’s jails and prisons.

"Each year, about 3,000 incarcerated individuals die," Charles Gould, president of Volunteers of America, says. "Crowded jails and prisons pose difficult challenges to caregivers who want to provide end-of-life care to dying inmates. This grant makes it possible for Volunteers of America to partner with other organizations in four demonstration sites to create comprehensive programs that will provide quality care in a prison setting."

The program, Guiding Responsive Action for Corrections at End-of-Life (GRACE), will incorporate the use of community standards in end-of-life care for prison inmates. GRACE will promote state-of-the-art pain management, education for health and correctional staffs, as well as training to involve inmates as hospice volunteers. The project sites are McCain Correctional Hospital in McCain, NC; Coxsackie Regional Medical Unit in Coxsackie, NY; Oregon State Penitentiary in Salem, OR; and Federal Medical Center in Carswell, TX.

Volunteers of America is a national, nonprofit, spiritually based organization providing local human service programs and opportunities for individual and community involvement. Volun-teers of America serves more than 1.5 million people each year, and provides services to about 50,000 prisoners, parolees, and their families.

Boards urged to take action against poor pain care

The Compassion in Dying Federation has launched a national effort to enlist medical licensing boards in their battle to improve pain care.

According to the organization, which strives improve end-of-life care, too many people suffer unnecessary pain, and that medical treatment of pain is often deplorable. Medical licensing authorities are key to achieving necessary changes.

Compassion in Dying Federation, which is based in Portland, OR, wrote a letter to Federal State Medical Boards (FSMB) and each state medical board. The letter follows a 1998 letter to the same recipients detailing significant inadequacies in pain care throughout the nation, and concrete steps FSMB and state boards should take to improve pain management.

"Too often, medical boards close their eyes and fail to make physicians accountable for woeful undertreatment of their patients’ pain," says Kathryn Tucker, director of legal affairs for Compassion in Dying Federation.

In 1998, medical licensing boards responded by saying they never hear of cases where patients are inadequately treated for pain in their jurisdictions. In response, Compassion In Dying officials have assisted patients and families prepare formal complaints of inadequate pain care and present them, along with expert opinions, to state medical boards.

In March, the organization announced its second complaint presented to the Medical Board of California (MBC). The complaint involves treatment of a 14-year-old boy hospitalized with excruciating headache pain and treated with placebos instead of real pain medication. The family recently filed complaints with the MBC and the California Board of Registered Nursing.

Compassion For Dying Federation’s first complaint to the MBC — involving 85-year-old cancer patient William Bergman, whose terminal cancer pain went untreated — failed to draw a response from the MBC. But the case received national attention when it featured on NBC’s news magazine, "Dateline."

Bergman’s family filed suit in California State Court asserting that the lack of pain treatment constituted elder abuse. On a 10-point scale Bergman was complaining of pain ranging from 7 to 10 while in the hospital. Another physician later prescribed pain medication and the patient was discharged to die at home. He died the next day.

The trial was expected begin in March, but has been delayed until November.

"These cases are typical of many we review through our pain management and advocacy efforts," the letter states. "We know there are thousands we never see. We are working hard to increase the tempo of response to the problems reflected in the stories above."