clinical symptoms are frequently associated with advanced cancer and the stages approaching death—pain, nausea and vomiting, fatigue, anorexia, confusion or delirium, anxiety, depression, and insomnia (Portenoy et al., 1994) —so their alleviation grows in importance for patients at this stage. Moreover, the approach of persistent disability or death requires decision-making on matters not purely medical, including advanced directives and home care options, sources of psychosocial support, burial arrangements, estate planning, and preparations for loved ones’ grief and bereavement. Handling these issues with appropriate, honest discussions in anticipation of their arrival—not based on unfounded assumptions or after the fact— can help ensure that they are managed as smoothly as possible and in accordance with the patient’s wishes. To accomplish this goal, patients and their family members must be well informed and well educated about the experience of dying and the end-of-life care options open to them.
This chapter surveys the sources of information available to cancer patients and investigates the extent to which these sources adequately address the concerns faced by cancer patients whose survival is limited. It then identifies the barriers to dissemination of information and patient education about end-of-life issues and makes recommendations for future initiatives to resolve the information gap between cancer cure and cancer death.
Patients first learn of their cancer diagnosis from their physicians, and then depend on them to monitor the progression of the disease and efficacy of treatment. It is natural, therefore, that the physician stands as the primary outlet for questions relating to symptoms, therapeutic options, and outcomes of cancer. Oncologists are involved in the care of most cancer patients at some point, but primary care physicians and other specialists provide a great deal of their care at various points during the illness, during recovery, and throughout survivorship (IOM, 1999). Nurses, social workers, and spiritual leaders are among the other health professionals who also deal directly and frequently with cancer patients about end-of-life care.
The dynamics of these patient-provider interactions depend on where they take place. In community physicians’ offices, patients are likely to spend more time talking directly to their personal physician or to a limited number of nursing specialists. In larger institutions such as those that the National Cancer Institute (NCI) officially designates as cancer centers, patient care is usually managed by health care teams of physicians in different specialties, as well as nurses, social workers, and students. An informal