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. Table of Contents Front Matter Summary 1. Introduction 2. Patterns of Childhood Death in America 3. Pathways to a Child 4. Communication, Goal Setting, and Care Planning 5. Care and Caring From Diagnosis Through Death and Bereavement 6. Providing, Organizing, and Improving Care 7. Financing of Palliative and End-of-Life Care for Children and Their Families 8. Ethical and Legal Issues 9. Educating Health Care Professionals 10. Directions for Research References Appendix A: Study Origins and Activities Appendix B: Prognostication Scores Appendix C: Assessing Health-Related Quality in End-of-Life Care for Children and Adolescents Appendix D: Cultural Dimensions of Care At Life 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 Index

In recent decades, advances in biomedical research have helped save or lengthen the lives of children around the world. With improved therapies, child and adolescent mortality rates have decreased significantly in the last half century. Despite these advances, pediatricians and others argue that children have not shared equally with adults in biomedical advances. Even though we want children to benefit from the dramatic and accelerating rate of progress in medical care that has been fueled by scientific research, we do not want to place children at risk of being harmed by participating in clinical studies. Ethical Conduct of Clinical Research Involving Children considers the necessities and challenges of this type of research and reviews the ethical and legal standards for conducting it. It also considers problems with the interpretation and application of these standards and conduct, concluding that while children should not be excluded from potentially beneficial clinical studies, some research that is ethically permissible for adults is not acceptable for children, who usually do not have the legal capacity or maturity to make informed decisions about research participation. The book looks at the need for appropriate pediatric expertise at all stages of the design, review, and conduct of a research project to effectively implement policies to protect children. It argues persuasively that a robust system for protecting human research participants in general is a necessary foundation for protecting child research participants in particular. Table of Contents Front Matter Summary 1 Introduction 2 The Necessity and Challenges of Clinical Research Involving Children 3 Regulatory Framework for Protecting Child Participants in Research 4 Defining, Interpreting, and Applying Concepts of Risk and Benefit in Clinical Research Involving Children 5 Understanding and Agreeing to Children's Participation in Clinical Research 6 Payments Related to Children's Participation in Clinical Research 7 Regulatory Compliance, Accreditation, and Quality Improvement 8 Responsible Research Involving Children References Appendix A: Study Origins and Activities Appendix B: State Regulation of Medical Research with Children Adolescents: An Overview and Analysis Appendix C: Health Care Privacy and Conflict-of-Interest Regulations Relevant to Protection of Human Participants in Research Appendix D: Glossary, Acronyms, and Laws and Regulations Appendix E: Committee Biographical Statements Index