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Conclusions and Recommendations

People with cancer suffer from an array of symptoms at all stages of the disease (and its treatment), though these are most frequent and severe in advanced stages. Much of the suffering could be alleviated if currently available symptom control measures were used more widely. For symptoms not amenable to relief by current measures, new approaches could be developed and tested, if even modest resources were made available. Both the use of current interventions and the development of new ones are hindered by the barriers discussed earlier (and in Part II of the full report). The National Cancer Policy Board's recommendations are intended to break down or lower the barriers to excellent palliative care for people with cancer today and for those who will develop it in years to come. The recommendations describe a series of initiatives directed largely—though not exclusively—at the federal government, which should be playing a more powerful role than it has done.

The recommendations are not laid out in parallel to the barriers, as earlier in this report. They have been consolidated as “packages” for particular organizations and entities, and some address more than one barrier. Recommendation 1, in particular, which focuses on the role of NCI-designated cancer centers, contains elements that address all the barriers.

NCI-designated cancer centers should play a central role as agents of national policy in advancing palliative care research and clinical practice, with initiatives that address many of the barriers identified in this report.



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Page 43 Conclusions and Recommendations People with cancer suffer from an array of symptoms at all stages of the disease (and its treatment), though these are most frequent and severe in advanced stages. Much of the suffering could be alleviated if currently available symptom control measures were used more widely. For symptoms not amenable to relief by current measures, new approaches could be developed and tested, if even modest resources were made available. Both the use of current interventions and the development of new ones are hindered by the barriers discussed earlier (and in Part II of the full report). The National Cancer Policy Board's recommendations are intended to break down or lower the barriers to excellent palliative care for people with cancer today and for those who will develop it in years to come. The recommendations describe a series of initiatives directed largely—though not exclusively—at the federal government, which should be playing a more powerful role than it has done. The recommendations are not laid out in parallel to the barriers, as earlier in this report. They have been consolidated as “packages” for particular organizations and entities, and some address more than one barrier. Recommendation 1, in particular, which focuses on the role of NCI-designated cancer centers, contains elements that address all the barriers. NCI-designated cancer centers should play a central role as agents of national policy in advancing palliative care research and clinical practice, with initiatives that address many of the barriers identified in this report.

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Page 44 Recommendation 1: NCI should designate certain cancer centers, as well as some community cancer centers, as centers of excellence in symptom control and palliative care for both adults and children. The centers will deliver the best available care, as well as carrying out research, training, and treatment aimed at developing portable model programs that can be adopted by other cancer centers and hospitals. Activities should include, but not be limited to, the following: formal testing and evaluation of new and existing practice guidelines for palliative and end-of-life care; pilot testing “quality indicators” for assessing end-of-life care at the level of the patient and the institution; incorporating the best palliative care into NCI-sponsored clinical trials; innovating in the delivery of palliative and end-of-life care, including collaboration with local hospice organizations; disseminating information about how to improve end-of-life care to other cancer centers and hospitals through a variety of media; uncovering the determinants of disparities in access to care by minority populations that should be served by the center and developing specific programs and initiatives to increase access; these might include educational activities for health care provid providing clinical and research training fellowships in medical and surgical oncology in end-of-life care for adult and pediatric patients; and creating faculty development programs in oncology, nursing, and social work; and providing in-service training for local hospice staff in new palliative care techniques. Recommendation 2: NCI should add the requirement of research in palliative care and symptom control for recognition as a “Comprehensive Cancer Center.” Practices and policies that govern payment for palliative care (in both public and private sectors) hinder delivery of the most appropriate mix of services for patients who could benefit from palliative care during the course of their illness and treatments. Recommendation 3: The Health Care Financing Administration (HCFA) should fund demonstration projects for service delivery and reimbursement that integrate palliative care and potentially life-prolonging treatments throughout the course of disease.

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Page 45 Recommendation 4: Private insurers should provide adequate compensation for end-of-life care. The special circumstances of dying children—particularly the need for extended communication with children and parents, as well as health care team conferences—should be taken into account 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 pharmaceutical 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 systems, payers, and standard-setting and accreditation bodies should strongly encourage their expedited development, validation, and use. Professional societies, particularly the American Society of Clinical Oncology, the Oncology Nursing Society, and the Society for Social Work Oncology, should encourage their members to facilitate the development and testing of guidelines and their eventual implementation, and should provide 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

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Page 46 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; supporting the development of technologies, including computer-based patient record systems and intranet-based communication systems, to improve the availability, quality, and timeliness of clinical data relevant to assessing quality of cancer care; expanding support for training in health services research and other disciplines needed to measure quality of care; increasing support for health services research aimed toward improved quality of cancer care measures; developing models for linkage studies and the release of confidential data for research purposes that protect the confidentiality and privacy of health care information; and funding demonstration projects to assess the impact of quality monitoring programs within health care systems. Research on palliative care for cancer patients has had a low priority at NCI, and as a result, few researchers have been attracted to the field and very few relevant studies have been funded over the past decades. NCI should continue to collaborate on end-of-life research with the National Institute of Nursing Research (the lead NIH institute for this topic) but cannot discharge its major responsibilities in cancer research through that mechanism. Recommendation 8: NCI should convene a State of the Science Meeting 1 on palliative care and symptom control. It should invite other National Institutes of Health, and government research agencies with shared interests should be invited to collaborate. The meeting should result in a high-profile strategic research agenda that can be pursued by NCI and its research partners over the short and long terms. 1 In 1999, NCI initiated State of the Science Meetings focused on specific types of cancer “to bring together the Nation's leading multidisciplinary experts, to identify the important research questions for a given disease and help define the scientific research agenda that will assist us in addressing those questions.”

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Page 47 Recommendation 9: NCI should establish the most appropriate institutional locus (or more than one) for palliative care, symptom control, and other end-of-life research, possibly within the Division of Cancer Treatment and Diagnosis. Recommendation 10: NCI should review the membership of its advisory bodies to ensure representation of experts in cancer pain, symptom management, and palliative care.