• © 2001 by American Society of Clinical Oncology

Patients’ Needs at the End of Life

To the Editor:

There has been growing recognition that patients’ needs at the end of life should be more thoroughly addressed. Several specialty boards and organizations, including the American Society of Clinical Oncology, have developed professional goals and standards on end-of-life care for their members.^1-3 Although the problem of inadequate care at the close of life has many causes, the insufficient training clinicians receive in this area plays a significant role.⁴ The textbooks used to train these clinicians are partially blameworthy. Initial research has outlined a rating schema for evaluating end-of-life care textbook content as absent, minimal, or helpful.⁵ Our research has identified major deficiencies in the end-of-life content of 50 best-selling medical textbooks, including six top oncology and hematology textbooks.⁶ This group of textbooks was among the quartile of specialties with the least end-of-life content (they were entirely lacking in information for 69.9% of expected content). In fact, more useful information about caring for dying patients from lung cancer was found in family and primary care medicine texts (average helpful content score, 28.2%) than in oncology texts (11.6%). In addition, chapters focused on death and dying were uncommon in these oncology textbooks.

We have begun to address these concerns by encouraging publishers, editors, and authors to improve their textbooks’ end-of-life content, including book chapters, cross-referencing, and indexing.⁷ In follow-up to this effort, we recently surveyed textbook publishers and editors to assess their progress in revising their texts.

We are able to report an encouraging initial response. To date, 23 editors (including only two of the six hematology and oncology textbook editors) and 19 publishers of 50 top-selling medical textbooks have responded to our 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, 11 with expanded cross-referencing, and 17 with revised indices. Thus, of the 50 textbooks, more than one third are planning to expand or have already expanded end-of-life care content in their next editions. Finally, we have received six personal letters from editors and publishers who have been supportive of this project, including a poignant one from a textbook editor who was himself dying of metastatic melanoma at the time he wrote.

As of late, the Robert Wood Johnson Foundation honored the textbook publishers, editors, and authors who have been working to make these important changes. On February 21, 2001, at an awards ceremony, at the Last Acts Project National Meeting, the authors presented awards to one medical textbook publisher (Lippincott Williams & Wilkins) and to the editors of three medical textbooks (Emergency Medicine, 5th edition, editor-in-chief: Judith Tintinalli; Nelson Textbook of Pediatrics, 16th edition, editors: Richard Behrman, Robert Kliegman, and Hal Jensen; and Textbook of Primary Care Medicine, 3rd edition, senior editor: John Noble).^8-10

Unfortunately, there is yet more work awaiting us. Most best-selling textbooks, including oncology and hematology textbooks, have not yet responded to the suggestions of their specialty boards, the needs of their readers, nor the demands of patients and families to improve clinical education in care of patients at the end of life. We will continue monitoring textbooks for years to come, and the Robert Wood Johnson Foundation will continue to offer awards to those authors, editors, and publishers who improve the end-of-life content in their books. It is essential that the current knowledge base for providing excellent palliative care and the ongoing research published in this journal quickly permeate into the best-selling oncology and hematology textbooks.