topics as coping strategies, pain, and cancer fatigue. Cancer Care distributes four “Cancer Care Briefs” —three- to five-page pamphlets on issues in cancer treatment, prevention, and resources—to address different concerns of people with advanced cancer and a number of others specifically directed at symptom management. Cancer Care can also disburse information from a rich library of practical, psychosocial, and medical information produced by its specialists, or acquired from other institutions, about palliative care and end-of-life issues.
Many groups also exist to inform and advocate on behalf of patients with a particular type of cancer (e.g., the National Association of Breast Cancer Organizations [NABCO], the Alliance for Lung Cancer Advocacy, Support, and Education [ALCASE], and the National Kidney Cancer Association [NKCA]). Some also offer resources to terminal patients with a particular cancer. NABCO, for one, compiles a list of manuscripts that deal with “recurrence and metastatic breast cancer” and will give inquiring callers directions on how to obtain these materials. ALCASE has published a 12-chapter Lung Cancer Manual (200 pp.) that integrates palliative care and end-of-life issues into all aspects of its discussions. NKCA’s We Have Kidney Cancer (1991, 52 pp.) provides background information on kidney cancer cause and treatment and includes a chapter on dealing with death. In addition, NKCA publishes Reflections (1997, 62 pp.), a physician-written guide to end-of-life issues for patients and their families, which it will also freely include in mailings to interested parties.
Relatively few organizations dedicate themselves specifically to end-of-life concerns in cancer care. One major institution, the National Hospice Organization (NHO), produces informational pamphlets on hospice care for patients or their loved ones who contact the NHO with questions. The American Pain Society, Wisconsin Cancer Pain Initiative, and City of Hope Pain/Palliative Care Resource Center are among the groups that advocate for the relief of pain and thus serve as important informational resources for terminal cancer patients. They offer support, advice, and a few supplementary publications on pain control (though most of their written materials are directed at health care professionals). Some initiatives are under way to create more such resource centers that specifically focus on end-of-life care. For example, the proposed Advance Planning and Compassionate Care Act of 1999 would establish an information clearinghouse and telephone hotline for end-of-life decisionmaking under the auspices of the Department of Health and Human Services (U.S. Congress, 1999b).
Pharmaceutical companies who manufacture drugs used in terminal care have also developed educational materials. Ortho Biotech, which distributes the cancer fatigue agent Procrit (erythropoietin), has developed a document for patients on psychological and practical tips to help overcome cancer fatigue (one of the eight primary end-of-life symptoms). Roxane