Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life

For patients and their loved ones, no care decisions are more profound than those made near the end of life. Unfortunately, the experience of dying in the United States is often characterized by fragmented care, inadequate treatment of distressing symptoms, frequent transitions among care settings, and enormous care responsibilities for families. According to this report, the current health care system of rendering more intensive services than are necessary and desired by patients, and the lack of coordination among programs increases risks to patients and creates avoidable burdens on them and their families. Dying in America is a study of the current state of health care for persons of all ages who are nearing the end of life.

Death is not a strictly medical event. Ideally, health care for those nearing the end of life harmonizes with social, psychological, and spiritual support. All people with advanced illnesses who may be approaching the end of life are entitled to access to high-quality, compassionate, evidence-based care, consistent with their wishes.

Dying in America evaluates strategies to integrate care into a person- and family-centered, team-based framework, and makes recommendations to create a system that coordinates care and supports and respects the choices of patients and their families. The findings and recommendations of this report will address the needs of patients and their families and assist policy makers, clinicians and their educational and credentialing bodies, leaders of health care delivery and financing organizations, researchers, public and private funders, religious and community leaders, advocates of better care, journalists, and the public to provide the best care possible for people nearing the end of life.

• Front Matter
• Summary
• 1 Introduction
• 2 The Delivery of Person-Centered, Family-Oriented End-of-Life Care
• 3 Clinician-Patient Communication and Advance Care Planning
• 4 Professional Education and Development
• 5 Policies and Payment Systems to Support High-Quality End-of-Life Care
• 6 Public Education and Engagement
• Glossary
• Appendix A: Data Sources and Methods
• Appendix B: Recommendations of the Institute of Medicine's Reports *Approaching Death* (1997) and *When Children Die* (2003): Progress and Significant Remaining Gaps
• Appendix C: Summary of Written Public Testimony
• Appendix D: Financing Care at the End of Life and the Implications of Potential Reforms
• Appendix E: Epidemiology of Serious Illness and High Utilization of Health Care
• Appendix F: Pediatric End-of-Life and Palliative Care: Epidemiology and Health Service Use
• Appendix G: Committee Biographies
• Index