ents, as well as health care team conferences—should be taken into ac count in setting reimbursement levels and in actually paying claims for these services when providers bill for them.

Information on palliative and end-of-life care is largely absent from materials developed for the public about cancer treatment. In addition, reliable information about survival from different types and stages of cancer is not routinely included with treatment information.

Recommendation 5: Organizations that provide information about cancer treatment (NCI, the American Cancer Society, and other patient-oriented organizations [e.g., disease-specific groups], health insurers and pharma ceutical companies) should revise their inventories of patient-oriented material, as appropriate, to provide comprehensive, accurate information about palliative care throughout the course of disease. Patients would also be helped by having reliable information on survival by type and stage of cancer easily accessible. Attention should be paid to cultural relevance and special populations (e.g., children).

Practice guidelines for palliative care and for other end-of-life issues are in comparatively early stages of development, and quality indicators are even more embryonic. Progress toward their further development and implementation requires continued encouragement by professional societies, funding bodies, and payers of care.

Recommendation 6: Best available practice guidelines should dictate the standard of care for both physical and psychosocial symptoms. Care sys tems, payers, and standard-setting and accreditation bodies should strongly encourage their expedited development, validation, and use. Pro fessional societies, particularly the American Society of Clinical Oncol ogy, the Oncology Nursing Society, and the Society for Social Work On cology, should encourage their members to facilitate the development and testing of guidelines and their eventual implementation, and should pro vide leadership and training for nonspecialists, who provide most of the care for cancer patients.

Recommendation 7: The recommendations in the NCPB report, Enhancing Data Systems to Improve the Quality of Cancer Care (see Appendix B) should be applied equally to palliative and end-of-life care as to other aspects of cancer treatment. These recommendations include

  • developing a core set of cancer care quality measures;

  • increasing public and private support for cancer registries;

  • supporting research and demonstration projects to identify new mechanisms to organize and finance the collection of data for cancer care quality studies;



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