between health professionals and patients. Physicians and researchers are already making advances in this field. The NCI and RWJF are supporting various studies, including ones to research Americans’ values regarding end-of-life care and to survey the educational needs of patients and their family caregivers regarding pain management (Ferrell et al., 1999). Some enterprising oncologists and hospital staffs are developing new communication tools, such as videotapes or personalized audiotapes, to make patients more aware of end-of-life issues and their health status in general (Ryan, 1999; Tattersall et al., 1994). The NCI, RWJF, and other institutions that fund research initiatives should place more emphasis on investigating patient preferences for learning about terminal and palliative care and novel techniques for improving the flow of information.
Terminal cancer patients or their family members who want more specialized, in-depth, or hands-on information about certain aspects of their illness, their future expectations, and their end-of-life care look to sources outside the immediate interactions with their health care providers. The materials they obtain reinforce their personal discussions, educate family members who might not be able to meet face-to-face with the providers, and provide needed psychological comfort to patients overwhelmed with their terminal prognosis. The NCI and the American Cancer Society (ACS) write the majority of the supplementary educational materials for cancer patients in the form of booklets, pamphlets, and fact sheets. These products can be obtained at no cost by direct solicitation, in waiting rooms, in the patient resource rooms that exist at some large cancer centers (such as the Dana Farber Cancer Institute and Fox Chase Cancer Center), and from some other more grassroots or specialized cancer groups. The preponderance of these materials deals with cancer prevention, basic background descriptions of various cancers and their treatments, clinical trials, and survivorship concerns. Only recently have the NCI and ACS begun publishing materials related to end-of-life issues.
The NCI’s primary patient-oriented document dealing with terminal cancer is Advanced Cancer: Living Each Day (NCI, 1998, 46 pp.). This booklet is divided into four sections: living each day, the personal reaction of cancer patients to their terminal prognosis, the reactions of their friends and family, and choices for care. The first three sections succinctly describe many of the psychosocial concerns of end-of-life care, while the final section tackles more practical issues such as introducing patients to hospice