PEDIATRICS Vol. 108 No. 4 October 2001, pp. 1051

End-of-Life Care

To the Editor.

Recently, the care that pediatricians provide to dying children has begun to attract attention.¹ Numerous specialty boards and organizations, including the American Academy of Pediatrics, have developed professional standards on end-of-life care for their members.^2,3 Although it may not be accurate to attribute inadequate end-of-life care to a single factor, insufficient training of clinicians in palliative care methods is undoubtedly a major contributor to the problem.⁴ Certainly, the textbooks used to train pediatricians must share some of the blame. Our previous research has revealed grossly deficient coverage of end-of-life content in 50 best-selling medical textbooks, including 4 top pediatrics textbooks.⁵ Although some of the pediatrics textbooks did include chapters devoted to end-of-life care, the amount of clinically useful content throughout these texts was limited. As a group, the pediatrics textbooks only contained helpful information for an average of 23.5% of expected end-of-life care content. These pediatrics texts were entirely lacking in information for 60.7% of expected end-of-life care content.

Confronted with this scarcity, we have undertaken efforts to encourage publishers, editors, and authors to improve their textbooks' end-of-life content, including adding or enhancing book chapters, cross-referencing, and indexing.⁶ As a follow-up to these efforts, we recently surveyed textbook publishers and editors to assess their progress in revising their books.

We have been welcomed by an encouraging initial response. To date, 23 editors (including editors from 2 of the 3 pediatrics textbooks) and 19 publishers of the 50 top-selling textbooks reviewed have responded to the follow-up survey. They report 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. In the group of 50 textbooks, more than one third are expanding end-of-life care content in their next editions. Finally, we have received supportive letters from 6 editors and publishers, including a poignant one from a textbook editor dying of metastatic melanoma at the time he wrote us.

Recently, the Robert Wood Johnson Foundation presented awards to honor the textbook publishers, editors, and authors who have been working to make these important changes. On February 21, 2001, at a ceremony at the Last Acts Project National Meeting, the authors presented awards to 1 medical textbook publisher (Lippincott, Williams & Wilkins) and to the editors of 3 textbooks (Nelson Textbook of Pediatrics, 16th edition, editors: Richard Behrman, Robert Kliegman, and Hal Jenson; Textbook of Primary Care Medicine, 3rd edition, senior editor: John Noble; and Emergency Medicine, 5th edition, editor-in-chief: Judith Tintinalli).

Unfortunately, our work is far from completion. Many best-selling textbooks have not yet responded to their specialty boards' suggestions, their readers' needs, or their patients' and parents' demands to improve the care children receive at the end of life. We are committed to monitoring these textbooks over the next several years, and the Robert Wood Johnson Foundation will continue offering awards to those publishers, editors, and authors who improve the end-of-life content of their books. It is essential that the current knowledge about providing excellent palliative care to dying children and that ongoing research about how to do so published in this journal quickly finds its way into the best-selling pediatrics textbooks.

Michael W. Rabow, MD
Stephen J. McPhee, MD
Department of Medicine
University of California, San Francisco
San Francisco, CA 94415

REFERENCES

1. Wolfe J, Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000; 342:326-333 [Abstract/Free Full Text]
2. Cassell CK, Foley KM. Principles for Care of Patients at the End-of-Life: An Emerging Consensus Among Specialties of Medicine. New York, NY: Millbank Memorial Fund; 1999
3. American Board of Internal Medicine. Caring for the Dying: Identification and Promotion of Physician Competency. Philadelphia, PA: American Board of Internal Medicine; 1996
4. Billings JA, Block S Palliative care in undergraduate medical education. Status report and future directions. JAMA. 1997; 278:733-738 [Abstract/Free Full Text]
5. Rabow MW, Hardie GE, Fair JM, McPhee SJ An evaluation of end-of-life care content in 50 textbooks from multiple specialties. JAMA. 2000; 283:771-778 [Abstract/Free Full Text]
6. Rabow MW, McPhee SJ, Fair JM, Hardie GE A failing grade for end-of-life content in textbooks: what is to be done. J Palliat Med. 1999; 2:153-155 [CrossRef][Medline]