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Improving Palliative Care for Cancer
which advice about end-of-life issues is accurate and evidence based, and which is not.
At this point, with the Web and Internet technology still early in their overall development, increased research should be the main objective regarding the use of this medium to help promote quality end-of-life cancer care. More work needs to be done to identify whether terminal cancer patients and their family members utilize Web-based resources to gather information and, if so, how they can best acquire the necessary education on-line. Research-funding agencies should solicit projects that use the Web to manage end-of-life issues, while addressing pitfalls such as access, reliability of information, and security and confidentiality of discussions. Some inroads have already been made in this area—for example, the American Medical Informatics Association promulgated its “Guidelines for the Clinical Use of Electronic Mail with Patients” (Kane and Sands, 1998) —but more study of patient preferences and attitudes is necessary.
In conjunction with this research, new and innovative ways to use the Web to educate patients needing palliative and end-of-life care have to be developed. One of the primary promises of Internet technology is its ability to go beyond the traditional written materials, or telephone support, in the provision of information. For example, an Internet interactive problem-solving package for people with pain is currently under construction. This Internet modality allows patients and their family members to seek information, while concurrently getting feedback on ways to solve their palliative care problems, so that the users can learn to be problem solvers and not have to rely solely on health professionals (Loscalzo, 1999). We should not be satisfied simply with encouraging the development of Web resources to reprint current written materials and need to support similar ground-breaking ways to disseminate information on palliative and terminal cancer care.
The current state of patient and family informational resources about end-of-life cancer care offers many opportunities for terminal cancer patients to obtain the education they need about the medical, practical, and psychosocial concerns that accompany disability and death. Numerous avenues for contact with health professionals exist, as well as a growing library of supplementary resources available from a range of organizations and through various media. However, the fact that many dying and disabled cancer patients remain undereducated about such topics as pain man-