that, even with modern advances in medical sciences, half of all cancer patients will face. Advanced Cancer, the one NCI-sponsored booklet on end-of-life concerns, can be contrasted with the 24 booklets the NCI produces on different types of cancer. The notion that one treatise can satisfy educational needs for the varied types of death and issues related to death is as incongruous as producing a booklet called Solid Tumors to provide background information on cancers of the breast, gastrointestinal (GI) tract, lung, and so forth. In addition, although the NCI reprints some of its booklets in Spanish, nearly all of these end-of-life materials are currently available only in English. This puts an increased burden on patients of Hispanic, Asian, or Russian descent, et cetera, who must face these issues and either do not speak English or use it as a second language.
Of greater concern is the lack of end-of-life content found in books not designed specifically for terminal disease. For example, the NCI booklet, What You Need to Know About Ovarian Cancer (NCI, 1993; 30 pp.) mentions nothing about the possibility that a patient might die of an ovarian tumor. The issue of death is introduced only with suggestions to “talk with the doctor about [your] chance of recovery” and a warning that “the disease can return.” For a type of cancer often diagnosed at its late, terminal stages, this disregard for terminal or palliative care is disconcerting. ACS materials tend to be somewhat more realistic. The ACS document on lung cancer relays the generally low overall survival rates from lung cancer and, in its discussion of the treatment options for lung cancer, breaks down the five-year survival percentages at each stage. Significantly, the ACS suggests “supportive care” as a viable choice for patients diagnosed as Stage IV non-small cell lung cancer and mentions the importance of treating pain and weight loss. Still, for another cancer that is most often diagnosed at its later stages, these paragraphs are given less space than highly investigational treatments such as “immunotherapy” and “gene therapy” and thus underemphasize the importance of end-of-life care. The supplementary materials that the NCI and ACS offer to deal with other end-of-life symptoms (e.g., pain and loss of appetite) also mention little about death and dying. The 1997 booklet When Cancer Recurs: Meeting the Challenge Again discusses pain control during treatment, but mentions nothing about palliative care more generally.
The NCI and ACS materials are also filled with troubling “symbolic language.” The title of the NCI book on terminal care, Advanced Cancer: Living Each Day, is just one illustration of how the NCI and ACS use oft-misunderstood euphemisms when discussing death and palliative care. Although this inclination in part reflects the feelings of patients and society in general, by evading straightforward discussions of these topics, the NCI inadvertently helps propagate an ignorance of the real issues. Another aspect of this symbolic treatment of death can be seen in the NCI’s and ACS’