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.

Contents

• THE NATIONAL ACADEMIES
• COMMITTEE ON APPROACHING DEATH: ADDRESSING KEY END-OF-LIFE ISSUES
• Reviewers
• Foreword
• Preface
• Acknowledgments
• Acronyms
• Summary
  • STUDY CHARGE AND APPROACH
  • STUDY FINDINGS AND RECOMMENDATIONS
  • CONCLUSION
• 1. Introduction
  • WHY THIS STUDY IS IMPORTANT NOW
  • STUDY CHARGE AND APPROACH
  • STUDY SCOPE
  • 17 YEARS OF PROGRESS
  • DYING IN AMERICA: 2014
  • RESEARCH NEEDS
  • SUMMARY
  • ORGANIZATION OF THE REPORT
  • REFERENCES
• 2. The Delivery of Person-Centered, Family-Oriented End-of-Life Care
  • REVIEW OF THE CURRENT SITUATION
  • THE PALLIATIVE APPROACH
  • Growth in Hospice Use
  • Growing Support for Palliative Care
  • Illustrative Palliative Care Processes
  • Palliative Care for Children
  • Palliative Care in Nonhospital Settings
  • Interdisciplinary Team Approach
  • Evidence for the Effectiveness of Palliative Care
  • THE PURSUIT OF QUALITY IN CARE NEAR THE END OF LIFE
  • Approaches to Improving Quality of Care Near the End of Life
  • Current Quality Measurement and Reporting Efforts
  • Limitations of Current Quality Measurement and Reporting Efforts
  • Opportunities for Enhancing Measurement and Reporting
  • Proposed Core Components of Quality End-of-Life Care
  • THE PROBLEM OF PROGNOSIS
  • Prognostic Uncertainties
  • Predictive Models
  • FAMILY CAREGIVERS
  • RESEARCH NEEDS
  • FINDINGS, CONCLUSIONS, AND RECOMMENDATION
  • REFERENCES
• 3. Clinician-Patient Communication and Advance Care Planning
  • BACKGROUND
  • THE CURRENT STATE OF ADVANCE CARE PLANNING AND WHAT IT ACHIEVES
  • ADVANCE CARE PLANNING AND TREATMENT PREFERENCES AMONG SPECIFIC POPULATION GROUPS
  • ELEMENTS OF GOOD COMMUNICATION IN ADVANCE CARE PLANNING
  • MODEL ADVANCE CARE PLANNING INITIATIVES
  • A PROPOSED LIFE CYCLE MODEL OF ADVANCE CARE PLANNING
  • RESEARCH NEEDS
  • FINDINGS, CONCLUSIONS, AND RECOMMENDATION
  • REFERENCES
  • ANNEX 3-1: ADVANCE CARE PLANNING IN THE CONTEXT OF COMMON SERIOUS CONDITIONS
  • ANNEX 3-2: OREGON PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT (POLST) FORM
• 4. Professional Education and Development
  • PROGRESS AND CONTINUING NEEDS
  • IMPEDIMENTS TO CHANGING THE CULTURE OF CARE THROUGH EDUCATION
  • ROLES AND PREPARATION OF PALLIATIVE CARE TEAM MEMBERS
  • FINDINGS, CONCLUSIONS, AND RECOMMENDATION
  • REFERENCES
• 5. Policies and Payment Systems to Support High-Quality End-of-Life Care
  • THE QUALITY CHALLENGES
  • THE COST CHALLENGES
  • FINANCING AND ORGANIZATION OF END-OF-LIFE CARE
  • PERVERSE INCENTIVES AND PROGRAM MISALIGNMENT
  • THE GAP BETWEEN SERVICES PAID FOR AND WHAT PATIENTS AND FAMILIES WANT AND NEED
  • THE CHANGING HEALTH CARE SYSTEM: FINANCING AND ORGANIZATION
  • THE NEED FOR GREATER TRANSPARENCY AND ACCOUNTABILITY
  • RESEARCH NEEDS
  • FINDINGS, CONCLUSIONS, AND RECOMMENDATION
  • REFERENCES
• 6. Public Education and Engagement
  • THE STATE OF PUBLIC KNOWLEDGE ABOUT END-OF-LIFE CARE
  • THE CHANGING CLIMATE FOR DISCUSSION OF DEATH AND DYING
  • CONSIDERATIONS FOR PUBLIC EDUCATION AND ENGAGEMENT CAMPAIGNS
  • CONTROVERSIAL ISSUES
  • RECOMMENDATION
  • REFERENCES
  • ANNEX 6-1: SELECTED PUBLIC ENGAGEMENT CAMPAIGNS ON HEALTH-RELATED TOPICS
• Glossary
• APPENDIXES
  • 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

Suggested citation:

IOM (Institute of Medicine). 2015. Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press.

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 committee responsible for the report were chosen for their special competences and with regard for appropriate balance.

Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the authors and do not necessarily reflect the views of the organizations or agencies that provided support for the project.