In our society’s aggressive pursuit of cures for cancer, we have neglected symptom control and comfort care. Less than one percent of the National Cancer Institute’s budget is spent on any aspect of palliative care research or education, despite the half million people who die of cancer each year and the larger number living with cancer and its symptoms. Improving Palliative Care for Cancer examines the barriers—scientific, policy, and social—that keep those in need from getting good palliative care.

It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.

Contents

• THE NATIONAL ACADEMIES
• NATIONAL CANCER POLICY BOARD
• Reviewers
• Preface
• Acronyms and Abbreviations
• Part 1
  • Executive Summary
    • Barriers to Excellent Palliative and End-of-Life Care
    • CONCLUSIONS AND RECOMMENDATIONS
  • 1. Background and Recommendations
    • INTRODUCTION
    • WHAT IS PALLIATIVE CARE?
    • INTENT OF THIS REPORT
    • BARRIERS TO EXCELLENT PALLIATIVE AND END-OF-LIFE CARE
    • END-OF-LIFE AND PALLIATIVE CARE: EVOLUTION OF THE ISSUE
    • THE 1990S: SIGNAL EFFORTS AND EVENTS AROUND PALLIATIVE AND END-OF-LIFE CARE
    • CURRENT NIH INVOLVEMENT IN PALLIATIVE AND END-OF-LIFE CARE
    • CONCLUSIONS AND RECOMMENDATIONS
    • REFERENCES
    • APPENDIX 1A
    • APPENDIX 1B Recommendations from Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000)
• Part 2
  • 2. Reliable, High-Quality, Efficient End-of-Life Care for Cancer Patients: Economic Issues and Barriers
    • INTRODUCTION
    • CURRENT FINANCING OF ADVANCED CANCER CARE
    • DESCRIPTION OF COSTS AND COST-EFFECTIVENESS OF TREATMENTS
    • METHODOLOGICAL CONSIDERATIONS CONCERNING STUDIES REPORTING COSTS
    • REFORMS IN FINANCING ARRANGEMENTS TO IMPROVE END-OF-LIFE CARE
    • POSSIBLE STRATEGIES TO IMPROVE FINANCING FOR CARE OF PATIENTS COMING TO THE END OF LIFE WITH CANCER
    • CONCLUSION
    • REFERENCES
  • 3. Quality of Care and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst
    • INTRODUCTION
    • QUALITY OF END-OF-LIFE CANCER CARE
    • CONCLUSION
    • REFERENCES
  • 4. The Current State of Patient and Family Information About End-of-Life Care
    • INTRODUCTION
    • ACQUIRING END-OF-LIFE INFORMATION FROM HEALTH CARE PROVIDERS
    • ACQUIRING END-OF-LIFE INFORMATION FROM THE NCI AND ACS
    • ACQUIRING END-OF-LIFE INFORMATION FROM OTHER ORGANIZATIONAL RESOURCES
    • ACQUIRING END-OF-LIFE INFORMATION FROM THE WORLD WIDE WEB
    • CONCLUSION
    • REFERENCES
  • 5. Palliative Care for African Americans and Other Vulnerable Populations: Access and Quality Issues
    • BACKGROUND—CANCER STATISTICS
    • UNDERUTILIZATION OF PALLIATIVE AND HOSPICE SERVICES
    • MINORITY ISSUES IN PALLIATIVE AND HOSPICE CARE
    • PHYSICIAN INFLUENCE ON END-OF-LIFE CARE
    • IMPROVING ACCESS TO AND QUALITY OF PALLIATIVE CARE FOR AFRICAN AMERICANS—HOW DO WE MOVE FORWARD?
    • REFERENCES
  • 6. End-of-Life Care: Special Issues in Pediatric Oncology
    • OVERVIEW: CHALLENGES UNIQUE TO THE PRACTICE OF PEDIATRIC PALLIATIVE CARE
    • EDUCATION OF PROVIDERS
    • EDUCATION OF CHILDREN AND FAMILIES ABOUT THE DYING PROCESS
    • ADOLESCENTS AND ASSENT
    • DELAYS IN THE INITIATION OF PALLIATIVE CARE FOR CHILDREN
    • FRAGMENTATION OF PALLIATIVE CARE SERVICES
    • INADEQUATE RELIEF OF PAIN AND OTHER PHYSICAL SYMPTOMS
    • REIMBURSEMENT ISSUES IN PEDIATRIC PALLIATIVE CARE
    • RESEARCH NEEDS IN PEDIATRIC ONCOLOGY END-OF-LIFE CARE
    • PEDIATRIC ONCOLOGY END-OF-LIFE CARE: FUTURE DIRECTIONS
    • REFERENCES
  • 7. Clinical Practice Guidelines for the Management of Psychosocial and Physical Symptoms of Cancer
    • INTRODUCTION
    • CLINICAL PRACTICE GUIDELINES FOR END-OF-LIFE CARE
    • IMPROVING MANAGEMENT OF DISTRESS: FUTURE DIRECTIONS
    • REFERENCES
  • 8. Cross-Cutting Research Issues: A Research Agenda for Reducing Distress of Patients with Cancer
    • INTRODUCTION
    • OVERVIEW OF RESEARCH RELATED TO END OF LIFE, PALLIATIVE CARE, AND SYMPTOM CONTROL
    • RESEARCH NEEDS
    • STATUS OF END-OF-LIFE AND SYMPTOM RESEARCH
    • FUTURE END-OF-LIFE AND SYMPTOM RESEARCH: PROBLEMS AND POTENTIAL SOLUTIONS
    • REFERENCES
    • APPENDIX 8-A Acknowledgments
  • 9. Professional Education in Palliative and End-of-Life Care for Physicians, Nurses, and Social Workers
    • INTRODUCTION
    • PHYSICIAN EDUCATION IN END-OF-LIFE CARE
    • NURSING EDUCATION IN END-OF-LIFE CARE
    • SOCIAL WORK EDUCATION IN END-OF-LIFE CARE
    • RECOMMENDATIONS FOR IMPROVING PROFESSIONAL EDUCATION FOR PHYSICIANS, NURSES, AND SOCIAL WORKERS IN END-OF-LIFE CARE
    • REFERENCES

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the Board responsible for the report were chosen for their special competences and with regard for appropriate balance.