agement and palliative care, hospice, and advanced directives indicates that this information is not effectively reaching patients. The reasons for this failure are manifold and relate not only to the poor quality of some of the information and its dissemination, but also to the behaviors of the patients themselves.
To promote the overall quality of palliative and terminal cancer care, the extant information about end-of-life care and its delivery from health care providers, supplementary organizations, and Internet resources must be improved. Some initial suggestions to accomplish this are summarized below.
Make patients better health consumers and raise their expectations for end-of-life care.
Develop the 58 NCI-sponsored cancer centers into models of patient education and information delivery.
Study patients’ preferences regarding the delivery of effective end-of-life care information, with an eye toward ethnic and cultural diversity in attitudes.
Evaluate and subsequently improve extant materials on terminal and palliative care, with emphasis on cultural relevance, symbolic language, and the continuity of care.
Distribute these materials more universally.
Improve communication of end-of-life and palliative care information through the popular information hotlines.
Increase national exposure of these organizations as sources of patient and family information.
Evaluate and subsequently improve their educational materials to make these resources more sensitive to patients’ end-of-life concerns.
Increase interorganizational communication and association to address more effectively the concerns of all terminal and disabled cancer patients.
Point out to pharmaceutical companies the pitfalls of piecemeal, vested-interest approaches to end-of-life care education and encourage them to refocus their informational materials.
Study the ways in which Internet informational resources can most effectively be made available to terminal cancer patients and their families.