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Formal and informal recommendations for professional standards on end-of-life care have been made by several specialty boards and organizations, including the American College of Cardiology (1–3). The problem of inadequate care at the end of life is an important and complex one. However, one may safely assert that the limited training that clinicians receive in this area is a major reason (4). Undoubtedly, the textbooks used to train these clinicians also contribute to the problem. Our research has unearthed the scarcity of end-of-life content in 50 best-selling medical textbooks, including four best-selling cardiology textbooks (5). On average, these four texts were found to contain helpful information for only 23.9% of expected end-of-life content. More than one-half (52.4%) of expected end-of-life care content was missing from the cardiology textbooks. Unfortunately, individual chapters that focused on end-of-life care were completely absent from all of these texts.
Given such documented deficiencies, we have begun efforts to encourage publishers, editors, and authors to improve their textbooks’ end-of-life content, including addition of book chapters, expanded cross-referencing, and improved indexing of relevant terms (6). In follow-up to these efforts, we recently surveyed book publishers and editors to evaluate their progress in revising their texts.
It is encouraging for us to be able to report a positive initial response. Overall, 23 editors (including editors of one-half of the cardiology textbooks) and 19 publishers of 50 topselling medical textbooks responded to the follow-up survey. They reported planned or completed expansion of end-of-life content in the next editions of 22 textbooks, including 17 textbooks with new end-of-life care chapters, 17 with revised indexes, and 11 with expanded cross-referencing. Therefore, among the 50 textbooks, more than a third are expanding their next edition’s content devoted to end-of-life care. Finally, we have received supportive letters from six publishers and editors, including a poignant letter from one editor who was himself dying of metastatic melanoma at the time he wrote to us.
Recently, the Robert Wood Johnson Foundation honored those textbook publishers and editors who have worked to make important changes in their texts. At an awards ceremony on February 21, 2001, at the Last Acts Project National Meeting in Washington, DC, the authors presented four awards: one to a medical textbook publisher (Lippincott, Williams, & Wilkins) and three to the editors of textbooks (Emergency Medicine, 5th ed., editor-in-chief: Judith Tintinalli; Textbook of Primary Care Medicine, 3rd ed., senior editor: John Noble; and Nelson Textbook of Pediatrics, 16th ed., editors: Richard Behrman, Robert Kliegman, and Hal Jensen).
And yet, there is more headway to be made. Most of these best-selling textbooks have not yet responded to specialty boards, readers, or ultimately the patients and families to improve content relating to care of patients at the end of life. We plan to continue to monitor these textbooks for the next several years, and the Robert Wood Johnson Foundation plans to continue to offer awards to those publishers, editors, and authors who work to improve their books’ end-of-life content. It is critical that the ongoing research in palliative care published in journals such as this one quickly diffuse into our cardiology textbooks.
- American College of Cardiology
- King S.B.,
- Ullyot D.J.,
- Basta L.,
- et al.
- American Board of Internal Medicine
- Cassell C.K.,
- Foley K.M.