Barriers to Improving End-of-Life Care Explored

CLEVELAND—While the majority of Americans wish to die in the comfort of their homes, most are actually dying in institutions, often with pain and other symptoms poorly controlled.

Desire vs Reality in End-of-Life Care

A 1996 Gallup survey commissioned by the National Hospice Organization showed that 90% of respondents expressed a desire to die at home. Although most cancer patients have the time to plan and the desire to die at home, the number of people dying in institutions remains about 74%. In 1992, 57% of Americans died in hospitals, 17% in nursing homes, and 20% in their own homes.

The majority of patients who die in institutions could be well cared for at home, said Donna S. Zhukovsky, MD, director of the Cancer Pain Clinic, Palliative Medicine Program, Cleveland Clinic Foundation. But there are a number of barriers to closing the gap between desire and reality in end-of-life care, including a lack of physician education in end-of-life care, the burden placed on families of patients who wish to die at home, and the underuse of hospice programs.

Dr. Zhukovsky spoke at a conference based on the Education of Physicians in End-of-Life Care (EPEC) program, developed by the American Medical Association in conjunction with the Robert Wood Johnson Foundation.

A short video produced by EPEC accompanied Dr. Zhukovsky’s talk. In it, several physicians speak candidly about the deficiencies in end-of-life care that existed in their own training.

EPEC project director Charles F. von Gunten, MD, PhD, is shown expressing his frustration with physicians who tell him that there is “nothing left to do” for their dying patients. At one point, another physician says, “We need to be confronting our own mortality and ‘dis-ease’ with emotions. We need to believe dying people are important.”

Near the video’s conclusion, Dr. von Gunten states that end-of-life care “combines elements of the scientist, humanist, friend, and comforter: All the things that have drawn people into the medical profession since the beginning.”

Dr. Zhukovsky said that before the EPEC program was developed, there had been no standardized medical education for end-of-life care. Only 4 of 126 US medical schools require a separate course in the care of the dying. The EPEC program was established to provide physicians with new skills and competencies in end-of-life care. Nurses and other health care professionals have also found it beneficial, she said.

“In addition to the lack of appropriate education, certain attitudes within medicine have contributed to the gaps in end-of-life care in this country,” Dr. Zhu-kovsky said. Some physicians may view palliative medicine as “hand-holding” rather than as a research-based practice of medicine, she said.

Physicians may also be uncomfortable with delivering bad news and facing the imminent death of their patient. Adverse legislation, including triplicate prescription pads, and unwarranted fears of psychological addiction contribute to physician reluctance to prescribe narcotic drugs for pain relief.

These shortcomings within the profession have, for the most part, remained unrecognized by the public. In 1997, an American Medical Association Public Opinion Survey asked the question: “Do you feel your doctor is open and able to help you discuss and plan for care in case of life-threatening illness?” Seventy-four percent of respondents said yes.

Hospice Underused

Hospice, which started in the United States in the early 1970s and received Medicare reimbursement beginning in 1982, addresses the social, financial, psychological, and spiritual needs of patients and families, as well as physical care. Yet hospice continues to be underused.

In 1995, hospice cared for only 17% of dying patients, and the median length of stay was declining. In 1998, the median length of stay was 20 days. “This doesn’t give hospice time to perform their interventions,” Dr. Zhukovsky said. “We’re not reaching people.”

Although 90% of Americans believe it is a family responsibility to provide care, Dr. Zhukovsky said, many families feel unprepared to take care of a dying family member at home. This contributes to the large number of patients in institutions.

Caregiving also carries the potential for financial devastation. One study found that 20% of family members quit work to provide care, 31% of families lost their savings, and 40% of families became impoverished as a result of caring for a dying member, she said.

“Forty percent of patients worry about being a burden to their families. It affects their decisions regarding treatment,” Dr. Zhukovsky said. They may make treatment choices that lead to an earlier demise, or consider physician-assisted suicide, in order to prevent their family from running out of money.