survival. While the ACS document on lung cancer relays the generally low overall survival rates and suggests “supportive care” as a viable choice for patients diagnosed as Stage IV non-small cell lung cancer, these paragraphs are given less space than highly investigational treatments such as immunotherapy and gene therapy. The materials that NCI and ACS offer to deal with other end-of-life symptoms (e.g., pain, loss of appetite) also mention little about death and dying. A factor limiting the effective reach of even the few relevant NCI and ACS materials that exist is that most are currently available only in English.
Many other organizations issue educational materials and distribute NCI and ACS booklets, and a few organizations dedicate themselves specifically to end-of-life concerns in cancer care. In general, these organizations have low visibility, and even if they have good information, most patients will never hear about them. In addition, the organizations themselves have limited abilities to adapt information to the individual needs of patients. Most patients who call, no matter how advanced their condition is, receive the same introductory packet and pamphlets, which are likely to have little relevance for patients with advanced, recurrent, or terminal cancer.
Pharmaceutical companies have begun producing information about symptom control that, not surprisingly, concentrates on their own products. A pharmaceutical firm that produces an antiemetic has little reason to alert people to competing products or approaches, much less treatments for other symptoms.
Physicians remain the primary source of information for patients about end-of-life care, but patients are often reluctant to bring up the topics of death and dying, so physicians themselves must initiate discussions if they are to take place (Pfeifer et al., 1994). Many physicians are not well prepared for this task, however, either by training or by experience. They may avoid it altogether, or if they attempt to inform and counsel patients, they may be unaware that the patient (and family members) may not fully understand the information or may be overwhelmed by too much information. Physicians and other health care providers, even at major cancer centers, may not have access to information resources that would facilitate informing their patients.
Another illustration relates to advance directives, mandated by law in some states and by hospital policy in some institutions. Many physicians and nurses will admit that these forms are often handed to newly admitted patients, among a large stack of paperwork, with little explanation.
Finally, even though many NCI-designated cancer centers might adver-