Laboratories—makers of morphine, oxycodone, and clonidine anti-pain medications—runs an on-line Pain Institute to answer patient questions about pain control. Janssen Pharmaceutica (which makes Duragesic, another alternative for pain management) also offers articles on recent advances in pain control and tips for people with chronic pain on its Web site.
The major drawback to the effectiveness of these organizations is that not enough cancer patients use them. A 1992 study of cancer survivors revealed that only 11 percent contacted cancer organizations (including the higher-profile NCI and ACS) after their diagnosis for information or support (Hewitt et al., 1999). Potentially fewer patients use them for questions specifically relating to end-of-life care. The NABCO information services reveal that although they get anywhere from 20 to 100 calls a day, at most one or two callers a month request hospice or end-of-life care information (McClure, 1999). The NKCA reports that the majority of its contacts are with newly diagnosed renal cell carcinoma patients and that most requests for its Reflections booklet come from the medical community (Dison, 1999). There are numerous explanations for these findings. Many of these organizations are small, not-for-profit entities, and so cannot take the steps needed to increase their national exposure. Moreover, patients and their family members might not think to contact these organizations because they believe—justifiably or not—that their personal physician or social worker has provided them with all the relevant information about their disease, treatment options, and what to expect in the future. Furthermore, patients may be in denial or feel self-conscious about their health status and not want to share information they consider private outside the provider-patient relationship. It is hard to reach out for new information when overwhelmed with recent bad news.
Another significant problem is that these organizations vary widely in how well they address end-of-life issues. As indicated above, Cancer Care, Inc., NABCO, ALCASE, and NKCA proficiently integrate palliative care information into all their materials. On the other hand, the National Brain Tumor Association (NBTA) publishes A Primer of Brain Tumors: A Patient’s Reference Manual (1998, 140 pp.)? which never mentions palliative care or the potential for disability and death—not even in the final five page section on “Comfort and Coping.” The National Ovarian Cancer Coalition (NOCC), an organization dedicated to “providing complete and accurate information regarding ovarian cancer,” sends inquiring patients a large packet of materials on ovarian cancer. However, end-of-life issues are addressed either obliquely, such as by including an Ortho Biotech pamphlet on cancer fatigue, or not at all, as in the NOCC publication Myths and