survey of a dozen cancer centers reveals that most discussion of end-of-life issues occurs in face-to-face conversations between the patient and the patient’s social worker. At Johns Hopkins University, for example, a social worker is assigned to a particular patient at his or her first visit and maintains this contact over the course of the patient’s illness (Nye, 1999). The two most significant end-of-life matters that lie outside the realm of social services at these centers are spiritual concerns, which are handled by the chaplain service or the person’s own religious leader, and specific medical questions, which are addressed either by the patient’s physician or by the appropriate specialist. Most institutions have a “pain team” of physicians and nurses with special expertise in pain control, and some centers go beyond that—in addition to its Pain Management Center, the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles (UCLA) offers a Non-Pain Symptom Management Center focused on fatigue, nausea, depression, and other symptoms (Abe, 1999).

To complement the personal interactions between patients and their health providers at large centers, the NCI has instructed all designated cancer centers to name one of their staff members as the official “patient educator” (Crosson, 1999). The NCI Office for Cancer Information, Communication, and Education (OCICE) has formulated a set of guidelines, Guidelines for Establishing Comprehensive Cancer Patient Education Services (NCI, 1999, 36 pp.), to guide these educators in developing local resources for cancer patient education. In addition, the OCICE distributes a resource list to all these educators listing available learning tools, and it convenes annual meetings to discuss advances in patient education (Crosson, 1999). At institutions such as Fox Chase Cancer Center, these educators are active in keeping patients informed about such matters as hospice and burial arrangements (Herman, 1999).

Shortcomings

Despite the presence of multiple outlets for discussions with trained health professionals about end-of-life concerns, patients and their families remain undereducated about hospice care, symptom management, and psychosocial realities. Reports indicate that patients’ experiences with cancer are often characterized by uncertainty and ambiguity (Yates and Stetz, 1999). Why are patients not receiving this information?

One explanation is that they are not asking for it. Physicians report that it falls on them to initiate discussions about terminal care, indicating that patients are reluctant to bring up the topics of death and dying in face-to-face conversations (Pfeifer et al., 1994). This reluctance is partly attributable to the general cultural attitude that rejects death as an option, leading to strong feelings of denial or, at the very least, making discussions about



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement