It is innately human to comfort and provide care to those suffering from cancer, particularly those close to death. Yet what seems self-evident at an individual, personal level has, by and large, not guided policy at the level of institutions in this country. There is no argument that palliative care should be integrated into cancer care from diagnosis to death. But significant barriers-attitudinal, behavioral, economic, educational, and legal-still limit access to care for a large proportion of those dying from cancer, and in spite of tremendous scientific opportunities for medical progress against all the major symptoms associated with cancer and cancer death, public research institutions have not responded. In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease, and their families.

This report builds on and takes forward an agenda set out by the 1997 IOM report Approaching Death: Improving Care at the End of Life, which came at a time when leaders in palliative care and related fields had already begun to air issues surrounding care of the dying. That report identified significant gaps in knowledge about care at the end of life and the need for serious attention from biomedical, social science, and health services researchers. Most importantly, it recognized that the impediments to good care could be identified and potentially remedied. The report itself catalyzed further public involvement in specific initiatives-mostly pilot and demonstration projects and programs funded by the nonprofit foundation community, which are now coming to fruition.

Contents

• THE NATIONAL ACADEMIES
• NATIONAL CANCER POLICY BOARD
• BACKGROUND PAPER AUTHORS
• Reviewers
• Preface
• Summary
  • 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 A
• APPENDIX B Recommendations from Enhancing Data Systems to Improve the Quality of Cancer Care (IOM, 2000)
• Acronyms and Abbreviations

Support for this project was provided by the National Cancer Institute; the Centers for Disease Control and Prevention; the American Cancer Society; American Society of Clinical Oncology; Abbott Laboratories; Amgen, Inc.; and Aventis. The views presented in this report are those of the Institute of Medicine and Commission on Life Sciences National Cancer Policy Board and are not necessarily those of the funding agencies.

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.