ing through these and other proposed methodologies, we can begin to impart the need for terminal or disabled cancer patients to seek out proper education on end-of-life issues.
In addition, the NCI and the 58 cancer centers could expand their educational resources. The NCI and many centers have the institutional resources to become focal points of vigorous patient education efforts. The NCI is already taking some steps in this direction. The OCICE is currently beginning work with the Association of Community Cancer Centers to expand the reach of its educational initiatives (Crosson, 1999). Yet more needs to be done. The NCI and the centers should better integrate and support the patient educator program, so that it can serve as an effective information-gathering tool at more institutions. They also could make their educational and informational resources more widely available, for example, to hospice patients not associated with their systems or to patients or family members who contact them over the phone or by e-mail. One way to do this would be for the NCI to make the development of these high-quality educational programs essential to a cancer center’s NCI sponsorship. This type of “top-down” policy initiative has worked before in this arena. In 1997, the Veterans Health Administration (VHA) commenced a quality performance measure mandating comprehensive palliative care planning for patients diagnosed as terminally ill, which encompassed six different factors, from advanced directives to pain and symptom management. As a result, the hospitals in the network individually took measures to improve their performance, and an external chart review analysis of VHA patients showed an increase in compliance with the national end-of-life care plan from 52 percent in late 1996 to 94 percent by mid-1999 (Ryan, 1999). Creating model patient education programs at these centers will place institutional pressure on the smaller hospitals to improve their facilities as well.
Finally, the deficiencies in patient-provider interactions about end-of-life care must be further explored. Studies have already indicated that if patients and their family members are provided educational information by their physicians, it helps support the patient, reinforce treatment goals, and assist in managing the side effects of therapy and disease (Ferrell et al., 1995). Yet more must be learned about the preferences and attitudes of terminal cancer patients regarding the discussion of death and dying, such as when in the course of their treatment these issues are best broached, how the information can be imparted most clearly, and whether they really understand what they are being told. It is also important to analyze ethnic and cultural diversity in the way people are most comfortable receiving this information and how these differences influence the effectiveness of educational efforts.
Armed with this information, cancer centers, professional organizations, and patient educators can begin to bridge the communication gap