Appendix G lists the organizations responsible for setting accreditation, licensure, and similar standards for other professionals including social workers, child-life specialists, and clergy. It also reports what the authors found on organizational Web sites and through personal conversations regarding inclusion of material about palliative and end-of-life care, including care for children. For the most part, coverage was slight to nonexistent. An in-depth survey might uncover more, but the committee suspects that the basic conclusion would be the same: most educational programs and resources ignore the end of life.
Medical textbooks have traditionally paid little attention to the description or management of either the end stages of diseases such as cancer and heart disease or the symptoms and distress commonly experienced by gravely ill or dying patients. One study of four widely used general medical textbooks concluded that they had little that was helpful to say about end-of-life care and that discussions of specific diseases usually dealt with “only prognostication and medical treatments to alter the course of the disease” (Carron et al., 1999, p. 82). A more comprehensive review of 50 medical textbooks likewise concluded that top-selling medical specialty textbooks “generally offered little helpful information on caring for patients at the end of life” and that discussions of specific disease had “no or minimal end-of-life care content” (Rabow et al., 2000, p. 771). A separate investigation of four leading surgical textbooks concluded that “disease epidemiology, prognosis/prevention, progression, and medical interventions were generally well discussed in all textbooks . . . [but] little helpful information was provided [about] breaking bad news/advanced care planning, mode of death, treatment decision-making, effect on family/surgeon, and symptom management” (Easson et al., 2001. p.34).
A similar analysis of the content of 50 leading nursing textbooks found that pain was the most commonly discussed topic related to end-of-life care, but such discussion comprised less than one-half of 1 percent of the text content (counted by pages) (Ferrell et al., 2000). The reviewers also found that the discussion of pain was often deficient in scope and sometimes inaccurate. A similar survey of social work textbooks is planned (PDIA, 2001a,b).
The committee found no similar, systematic assessments of pediatric textbooks. However, editors of one text have begun to include more information on end-of-life issues and palliative care (Behrman et al., 2000). Still, in this and other texts, the sections on many conditions that are usually or often fatal include little or no discussion of the end stage of the disease or