death and dying uncomfortable for patients and their families. In addition, patients’ personal views of their health and medical prognosis influence their avoidance of such discussion. A paper from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) indicates that patients’ estimates of their prognoses influence their personal treatment preferences and that patients generally overestimate their chances for survival (Weeks et al., 1998). If patients and their family members do not realize that death is approaching, they cannot be expected to be active participants in such discussions with their health care providers. A thin line exists in the minds of patients and health professionals between genuine hope and pragmatic acceptance of death and disability.
Recent studies indicate that even when patients and their family members are fully educated about their end-of-life options, they can misunderstand the information they are given (Smith and Swisher, 1998; Tattersall et al., 1994). For example, even after much publicity and laws mandating the discussion of advanced directives with hospital patients, studies have indicated that many patients do not know what advanced directives are and why they matter in end-of-life situations (IOM, 1997). Some factors contributing to this misunderstanding have already been identified, including the stress and anxiety surrounding the communication of information about death, patients’ denial of their health status, and health providers’ tendency to use technical jargon without further explanation (Tattersall, 1994). At the other extreme, patients can feel confused or overwhelmed if they receive information from too many sources, for example, lectures and informational materials from the physician, the nurse, the social worker, and the patient educator. It is important for health care professionals not only to communicate end-of-life issues, but also to ensure that the people on the receiving end of the discussion can digest what is being said.
A second major reason for the failure of these health provider resources to inform patients about end-of-life issues is the inadequate general implementation of many of these patient education initiatives. For example, the NCI patient educator program does not provide additional funds to the cancer centers for the program (Crosson, 1999). As such, the proficiency and level of involvement of these educators can vary widely; personal interviews with people at these institutions suggest that the directors of some cancer centers do not even know patient educators exist. Another illustration of this deficiency can be found in the execution of advanced 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. In this milieu, it is no wonder that these patients, even after signing an advanced directive, might still claim no knowledge of what one is.
Finally, even though many NCI-designated cancer centers might adver-