The death of a child is a special sorrow. No matter the circumstances, a child’s death is a life-altering experience. Except for the child who dies suddenly and without forewarning, physicians, nurses, and other medical personnel usually play a central role in the lives of children who die and their families. At best, these professionals will exemplify “medicine with a heart.” At worst, families’ encounters with the health care system will leave them with enduring painful memories, anger, and regrets.

When Children Die examines what we know about the needs of these children and their families, the extent to which such needs are—and are not—being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do not—and will likewise help all families who suffer with their seriously ill or injured child.

Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child’s life-threatening illness or injury.

Contents

• THE NATIONAL ACADEMIES
• COMMITTEE ON PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES
• DEDICATION
• PREFACE
• ACKNOWLEDGMENTS
• REVIEWERS
• SUMMARY
  • CONTEXT AND CHALLENGES
  • WORKING PRINCIPLES
  • PROVIDING AND ORGANIZING CHILD- AND FAMILY-CENTERED CARE
  • FINANCING
  • LEGAL AND ETHICAL ISSUES
  • EDUCATION OF HEALTH PROFESSIONALS
  • DIRECTIONS FOR RESEARCH
• CHAPTER 1. INTRODUCTION
  • PROBLEMS AND CHALLENGES
  • IMPROVING PALLIATIVE, END-OF-LIFE, AND BEREAVEMENT CARE FOR CHILDREN AND THEIR FAMILIES
  • STUDY ORIGINS AND REPORT OVERVIEW
  • GUIDING PRINCIPLES
  • CONCEPTS AND DEFINITIONS
• CHAPTER 2. PATTERNS OF CHILDHOOD DEATH IN AMERICA
  • CHILDHOOD DEATH IN THE CONTEXT OF IMPROVED CHILD HEALTH
  • INFANT, FETAL, AND PERINATAL DEATHS
  • MORTALITY FOR CHILDREN AGED 1 TO 4 AND 5 TO 9
  • MORTALITY FOR CHILDREN AGED 10 TO 14 AND 15 TO 19
  • GENDER, SOCIOECONOMIC, AND OTHER DIFFERENCES AND DISPARITIES IN CHILD MORTALITY
  • WHERE CHILDREN DIE
  • IMPLICATIONS
• CHAPTER 3. PATHWAYS TO A CHILD'S DEATH
  • TRAJECTORIES OF DYING
  • ILLUSTRATIVE STORIES OF CHILDREN AND THEIR FAMILIES
  • PATHWAYS OF CARE
  • WHAT DO WE KNOW ABOUT THE FOCUS AND ADEQUACY OF CARE FOR CHILDREN WHO DIE?
  • IMPLICATIONS
• CHAPTER 4. COMMUNICATION, GOAL SETTING, AND CARE PLANNING
  • WHAT IS HAPPENING? DETERMINING AND COMMUNICATING DIAGNOSIS AND PROGNOSIS
  • WHAT ARE OUR OPTIONS? ESTABLISHING GOALS
  • WHAT WILL HELP MY CHILD AND MY FAMILY? FITTING CARE TO GOALS AND CIRCUMSTANCES
• CHAPTER 5. CARE AND CARING FROM DIAGNOSIS THROUGH DEATH AND BEREAVEMENT
  • THE PHYSICAL DIMENSIONS OF CARE
  • THE EMOTIONAL AND PSYCHOLOGICAL DIMENSIONS OF CARE
  • THE SPIRITUAL DIMENSIONS OF CARE
  • THE PRACTICAL DIMENSIONS OF CARE
  • GRIEF AND BEREAVEMENT CARE
• CHAPTER 6. PROVIDING, ORGANIZING, AND IMPROVING CARE
  • ACCOUNTABILITY AND QUALITY
  • THE CHALLENGES OF COORDINATION AND CONTINUITY
  • HEALTH CARE PROFESSIONALS
  • ORGANIZATIONS AND SETTINGS OF CARE
  • COMMUNITY AND REGIONAL SYSTEMS OF CARE
• CHAPTER 7. FINANCING OF PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES
  • WHO PAYS FOR PALLIATIVE AND END OF LIFE CARE FOR CHILDREN?
  • HOW PHYSICIANS, HOSPITALS, AND OTHER PROVIDERS ARE PAID
  • MANAGED CARE AND END-OF-LIFE CARE
  • DIRECTIONS FOR POLICYMAKERS AND INSURERS
• CHAPTER 8. ETHICAL AND LEGAL ISSUES
  • TYPES OF DECISIONS
  • ETHICAL CONSIDERATIONS
  • STRATEGIES FOR PREVENTING OR RESOLVING PARENT– CLINICIAN AND OTHER CONFLICTS ABOUT CLINICAL CARE
  • LEGAL CONSIDERATIONS
  • CONCLUSION
• CHAPTER 9. EDUCATING HEALTH CARE PROFESSIONALS
  • BASICS OF HEALTH PROFESSIONS EDUCATION FOR PEDIATRIC PALLIATIVE AND END-OF-LIFE CARE
  • CURRENT STATUS OF PROFESSIONAL PREPARATION IN PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILIES
  • INITIATIVES TO IMPROVE EDUCATION FOR PEDIATRIC PALLIATIVE AND END-OF-LIFE CARE
  • DIRECTIONS FOR EDUCATORS
• CHAPTER 10. DIRECTIONS FOR RESEARCH
  • INITIATIVES TO ENCOURAGE PEDIATRIC RESEARCH
  • DIRECTIONS FOR FUTURE RESEARCH
  • CHALLENGES OF RESEARCH ON PALLIATIVE AND END-OF-LIFE CARE FOR CHILDREN AND THEIR FAMILES
  • ETHICAL AND LEGAL ISSUES IN RESEARCH INVOLVING CHILDREN
  • CONCLUSION
• REFERENCES
• APPENDIX A STUDY ORIGINS AND ACTIVITIES
• APPENDIX B PROGNOSTICATION SCORES
• APPENDIX C ASSESSING HEALTH-RELATED QUALITY OF LIFE IN END-OF-LIFE CARE FOR CHILDREN AND ADOLESCENTS
• APPENDIX D CULTURAL DIMENSIONS OF CARE AT LIFE'S END FOR CHILDREN AND THEIR FAMILIES
• APPENDIX E BEREAVEMENT EXPERIENCES AFTER THE DEATH OF A CHILD
• APPENDIX F END-OF-LIFE CARE IN EMERGENCY MEDICAL SERVICES FOR CHILDREN
• APPENDIX G EDUCATION IN PEDIATRIC PALLIATIVE CARE
• APPENDIX H PROGRESS IN PEDIATRIC PALLIATIVE CARE IN NEW YORK STATE—A DEMONSTRATION PROJECT
• APPENDIX I COMMITTEE BIOGRAPHICAL STATEMENTS

Major support for this project was provided by the National Institute for Nursing Research (NIH Task Order #79), the Greenwall Foundation, the Project on Death in America of the Open Society Institute, and the National Cancer Institute. Additional support was provided by the Health Services and Resources Administration, the Robert Wood Johnson Foundation, the National Heart Lung and Blood Institute, the National Institute of Mental Health, and the National Institute for Child Health and Development. The views presented are those of the Institute of Medicine Committee on Palliative and End-of-Life Care for Children and Their Families and are not necessarily those of the funding organization.

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.