Medical Textbooks Lack Information on End of Life Care

Chicago -- February 2000 -- Top medical textbooks generally don't include enough information on how to care for patients at the end of their lives, researchers reported this month in the Journal of the American Medical Association.

Previous studies have concluded that many patients die in pain unnecessarily or in hospitals rather than at home. Inadequate training has been blamed for the deficient care -- and doctors have reported increasing anxiety about treating dying patients.

"The information exists, but it's not being relayed" to medical students, said Dr. Michael Rabow, the study's lead author and an assistant professor of medicine at the University of California, San Francisco. "Pain goes untreated primarily because the focus is on extending life."

Lack of adequate pain control and palliative care training on the part of doctors, nurses and other medical personnel has been cited as one reason some use to justify assisted suicide.

Textbooks covering surgery, AIDS and oncology were the worst offenders, researchers said. Textbooks with the highest percentage of helpful end-of-life care content - such as social and spiritual issues and ethics - were in family medicine, geriatrics and psychiatry.

Textbooks are especially important because they help "establish the standard practice for health care," Rabow said. In addition for being used to train medical students and residents, textbooks also are a reference for more experienced doctors.

Rabow and his colleagues reviewed 50 best-selling medical textbooks from a variety of specialties, including several diseases that often lead to death. They assessed the information available in the textbooks in 13 areas - including pain management, psychological issues, ethics and physician roles. They rated the material in each textbook as helpful, minimal or absent.

Overall, the researchers found helpful information in about one-fourth of those 13 categories. No information was found in half of the categories.

Textbooks with the least end-of-life content included those on infectious diseases and AIDS - 70 percent of the expected content was absent; and oncology and hematology - 62 percent of the content was missing.

Primary care medicine and psychiatry had the highest percentage of helpful content - 34 percent.

Dr. Nicholas Christakis, who was not involved with the study and specializes in hospice and palliative care at the University of Chicago, said the study confirmed that "Americans die needlessly bad deaths."

"Textbooks are not the only problem or the magic bullet that will solve it, but it's an important step," he said.

The authors did say that some changes are already under way. Publishers are commissioning updates in end-of-life content in textbooks in nursing, pediatrics and psychiatry and in two medical textbooks.

And, the authors report, national accreditation and licensing organizations are increasingly requiring a higher standard of competence in end-of-life care.

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