Getting Information on End-of-Life Care Into Medical Textbooks

From 1998 to 2003, project staff at the University of California, San Francisco School of Medicine reviewed the content on end-of-life care in 50 top-selling medical textbooks and worked with publishers, editors and authors to improve and increase the amount of content on this subject matter in these books.

The project was part of the Robert Wood Johnson Foundation (RWJF) Targeted End-of-Life Projects Initiative national program.

Key Findings

  • Investigators reported the following findings in the peer-reviewed Journal of the American Medical Association (February 9, 2000):

    • "Top-selling books generally offered little helpful information on caring for patients at the end of life. Most disease-oriented chapters had no or minimal end-of-life care content. Specialty textbooks with information about particular diseases often did not contain helpful information on caring for patients dying from those diseases."
    • Overall, helpful information was provided in 24.1 percent of the expected end-of-life content domains. In 19.1 percent of the textbooks, the expected content received minimal attention; in 56.9 percent, it was absent.
    • As a group, the textbooks with the highest percentages of absent content were in surgery (71.8%), infectious diseases/AIDS (70%) and oncology/hematology (61.9%); textbooks with the highest percentage of helpful end-of-life care content were in family medicine (34.4%), geriatrics (34.4%) and psychiatry (29.6%).
    • Content domains covered least well were social, spiritual, ethical and family issues, as well as physician after-death responsibilities.
    • On average, textbook indexes cited 2 percent of their total pages as pertinent to end-of-life care.