adequacy of the end-of-life and palliative care content and the symbolic language of the NCI and ACS materials. Through this effort, NCI and ACS should be inspired to develop more realistic and culturally relevant information booklets—translated, if there is sufficient demand, into Spanish and other languages—that are more responsive to the needs of cancer patients.
The NCI and ACS must subsequently intensify their efforts to distribute these supplementary materials so more patients get them. By targeting community oncology offices, hospitals, and support groups, in addition to the larger NCI-sponsored cancer centers, these organizations can use their considerable resources and influence to support the dissemination to patients of materials that address end-of-life and palliative care. As indicated in the previous section, this information may represent the first time some patients or their family members hear about hospice, advanced directives, and other topics and might therefore help stimulate discussion between cancer patients and their health care providers.
Improving the quality of communication about end-of-life issues from the NCI and ACS hotlines is one important way to support this information distribution effort, because records show that hundreds of thousands of people and patients call these hotlines each month (Ades, 1999; Thomsen, 1999). Members of the NCI and ACS support staff need to recognize better when palliative care or end-of-life information is appropriate and should perhaps be given methodologies by which to start discussions with callers on these issues. The NCI and ACS should develop more specific guidelines for these specialists and counselors that address the need for education about death and dying, in addition to diagnosis and treatment concerns.
Numerous other organizations supplement and complement the NCI and ACS in their efforts to educate cancer patients and their family members. All of these groups issue their own educational materials (and may distribute NCI and ACS booklets as well), and some are also designed to set up patients with “peer counselors,” other non-health professionals who have survived the patients’ particular cancer diagnosis. Among their many topics, they handle end-of-life care issues.
General cancer organizations have grown out of grassroots advocacy efforts by citizens and private institutions, and these organizations devote some resources to end-of-life care issues. Cancer Care, Inc., in New York, for example, offers written materials, personal support from trained social workers, and telephone educational programs and conferences on such