sources—health professionals, family, friends, religious leaders, printed materials, telephone hotlines, mail order, and increasingly, the World Wide Web. The materials available, however, emphasize curative treatment and living as a cancer survivor to the relative exclusion of information on palliative care and end-of-life issues. Kesselheim, in Chapter 4, analyzes the state of information available for those with advanced cancer who are likely to die from their disease.
Physicians are often the first, and remain the most important, source of information for a large proportion of patients about all aspects of a cancer diagnosis and treatment.
NCI and the American Cancer Society (ACS) write the majority of educational materials for cancer patients, in the form of booklets, pamphlets, and fact sheets, and make them freely available in a variety of ways. Most of the materials deal with cancer prevention, descriptions of various cancers and their treatments, clinical trials, and survivorship concerns. Only recently have NCI and ACS begun publishing materials related to end-of-life issues.
NCI produces one publication, Advanced Cancer: Living Each Day (1998), aimed at dying patients and booklets for some specific end-of-life concerns: Eating Hints for Cancer Patients (1998), Get Relief from Cancer Pain (1994), and Pain Control (2000, published in conjunction with ACS). NCI’s Physician Data Query (PDQ) has a section dealing with “Supportive Care Topics,” covering the major symptoms at the end of life. There are also “Cancer Facts,” information sheets about hospice care and national and local cancer support organizations.
Finally, NCI’s Cancer Information Service (CIS) comprises 19 resource centers across the country that answer calls to “1–800–4-CANCER.” CIS representatives mail patients NCI-produced and other approved materials, according to the type and stage of cancer and the caller’s requests.
In addition to distributing NCI material, ACS offers its own booklets, including one directed at end-of-life care, called Caring for the Patient with Cancer at Home (1998).
Overall, the easily available information about palliative and end-of-life care is inadequate. The few publications mentioned are among hundreds of cancer-related publications that ignore the dimension of advanced disease and death from cancer. For instance, the NCI booklet What You Need to Know About Ovarian Cancer (1993) mentions nothing about the possibility that a patient might die of an ovarian tumor, despite the fact that this cancer often is diagnosed in late stages, with little hope for long-term