Too frequently, clinicians feel lost and out of place caring for dying patients. They often fear that recognizing the imminence of death may minimize a patient's hope. They also may have little confidence in their ability to manage severe pain and other terminal symptoms, according to an editorial in the November 15 issue of the Journal of American Medical Association (JAMA), an issue devoted to the topic of end-of-life care.
These challenges are not surprising because physicians are not taught much about end-of-life care in medical school or residency training, said Stephen McPhee, MD, UCSF professor of medicine, and section editor for a new bimonthly JAMA series devoted to caring for patients who are near or at the end of life. The series titled Perspectives on Care at the Close of Life is co-edited by Michael Rabow, MD, UCSF assistant professor of medicine, and Steven Pantilat, MD, UCSF assistant professor of medicine.
In 1999, only 26 percent of residency programs in the United States offered a course on care at the end of life as part of the curriculum, and 15 percent of programs offered no formal training. "In fact, the very personal reactions medical students have to interacting with dying patients and their families are frequently unexamined," according to the editors.
Compounding this problem is the lack of useful information about end-of-life care in mainstream textbooks, explained Rabow, the lead author of an earlier study that analyzed palliative care content in top-selling texbooks (JAMA, February 9, 2000).
"In medical school, we learn about the many diseases that kill people, but we don't learn how to help people when they die," said Pantilat, director of the UCSF Comfort Care Suite, a home-like wing in UCSF Medical Center where trained staff focus on patient comfort and where family members can give support and say their goodbyes. He explained that this series in JAMA serves as an important tool to teach doctors, nurses and other clinicians how to better manage end-of-life care issues.
The section will present case based discussions of problems in caring for patients with end stage, serious illness. The series begins in the current issue of JAMA with practical suggestions about how health care providers can initiate end-of-life care discussions with patients and why they should do it earlier and more systematically than is typical. "This can allow patients to make informed choices and have more opportunity for work on issues of life closure," said Pantilat. Other topics during the first year will include symptom management, hospice care, cross-cultural differences in dealing with death, psychological issues, spiritual growth, and grief and bereavement, he said.
"We avoid discussions about death at our own peril," said Pantilat. "If we don't talk about dying, we miss the opportunity to help patients leave a legacy, attend to what's really important, and engage their families. We also miss the opportunity for personal growth. One of the greatest gifts in confronting death is the perspective it offers about living life."
In 1998, Pantilat received a grant from the Soros Foundation's Project On Death and Dying in America to be a faculty scholar for two years. During his scholarship, he developed and implemented an end-of-life care curriculum for UCSF medicine residents, which focused on talking to terminally ill patients and their families. The curriculum has since been integrated into all internal medicine training programs at UCSF.
The JAMA series on end-of-life care is produced with the support of the Robert Wood Johnson Foundation. The series is coordinated and edited by the UCSF team, under the direction of JAMA section editor Margaret Winker, MD.
Journal
JAMA