Facts About Ovarian Cancer: What You Need to Know (1997, 64 pp.)? which does not discuss palliative care.
In addition, these organizations have limited abilities to adapt the information they distribute to the individual needs of patients. An informal survey indicated that most patients who call, no matter how advanced their condition is, receive the same introductory packet and pamphlets (or a small variation thereof). As a result, while brochures offering hope and goals for living with cancer are appropriate to patients with early-stage disease, these same “educational” materials are being sent to patients with advanced, recurrent, or terminal cancer. This is indicative of a more general inability of some of these organizations to deal with the informational needs of dying or disabled patients.
Perhaps partly as a result of the inadequate information emerging from these sources, pharmaceutical companies that dispense palliative care drugs have started developing their own educational materials. However, letting companies that have a financial stake in end-of-life care be a primary source of education and background information about these concerns can be problematic. For example, the nature of the information produced will inherently be biased and focused, because a pharmaceutical firm that produces an antiemetic has little economic reason to alert people to cancer fatigue, and vice versa. As a result, patients get exposed only to a very piecemeal approach to palliative care education.
Many of these groups should consider increasing their exposure if they are going to be helpful in informing patients and their families about end-of-life care. If more terminal cancer patients contacted Cancer Care, Inc., for example, they could use its many useful resources—both written and verbal—to learn about the parameters of their palliative and end-of-life care. This goal can be pursued on many different fronts. Research on cancer patient preferences and information-gathering behavior should be undertaken, with an emphasis on surveying patients for their views of these organizations and trying to learn how to increase patients’ use of them. In addition, supporting joint educational initiatives among these various grassroots, or cancer-specific, organizations and the NCI can plug these groups into a wider range of financial and institutional assets. For example, the NCI’s CIS and Cancer Care, Inc., have developed a referral partnership, where NCI cancer information specialists refer patients who need support for psychosocial issues to a Cancer Care social worker, while the Cancer Care staff refers calls requiring technical information to the NCI (Thomsen, 1999). Steps must also be taken to teach health providers, community hospitals, and cancer centers of the existence and availability of these