This book establishes a framework for assessing health care reform proposals and their implementation. It helps clarify objectives, identifies issues to be addressed in proposals, distinguishes between short- and long-term expectations and achievements, and directs attention to important but sometimes neglected questions about the organization and provision of health care services. In addition, the volume presents a discussion and analysis of issues essential to achieving fundamental goals of health care reform: to maintain and improve health and well-being, to make basic health coverage universal, and to encourage the efficient use of limited resources. The book is a useful resource for anyone developing or assessing options for reform. Table of Contents Front Matter Preamble Extending Access to Health Care Containing Health Care Costs Assuring the Quality of Care Financing Reform Improving the Infrastructure for Effective Change Conclusion References

Beginning in late 2004, the IOM began a project to take a new look at disability in America. It will review developments and progress since the publication of the 1991 and 1997 Institute reports. For technical contracting reasons, the new project was split into two phases. During the limited first phase, a committee appointed by IOM planned and convened a 1-day workshop to examine a subset of topics as background for the second phase of project. As was agreed upon with the sponsor of the workshop, the Centers for Disease Control and Prevention (CDC), the topics were: methodological and policy issues related to the conceptualization, definition, measurement, and monitoring of disability and health over time; trends in the amount, types, and causes of disability; disability across the age spectrum and in the context of normal aging; and secondary health conditions. The phase-one workshop was held in Washington, D.C. on August 1, 2005. Its participants included researchers, clinicians, social service professionals, policy experts, and consumer representatives and advocates. The meeting agenda and list of participants are included in Appendix A. Workshop on Disability in America: A New Look- Summary and Background Papers summarizes the workshop presentations and discussions. The background papers prepared for the workshop are included in Appendixes B through O. Some papers were submitted and circulated in advance of the meeting, whereas others were first presented at the meeting. The analyses, definitions, and views presented in the papers are those of the paper authors and are not necessarily those of the IOM committee. Likewise, the discussion summary is limited to the views of the workshop participants. Table of Contents Front Matter Introduction Summary of Workshop Presentations and Discussions Appendix A Workshop Agenda and Participants Appendix B Conceptual Models of Disability: Past, Present, and Future--Gale Whiteneck Appendix C Defining and Classifying Disability in Children--Rune J. Simeonsson Appendix D How Does the Environment Influence Disability? Examining the Evidence--Julie J. Keysor Appendix E Late-Life Disability Trends: An Overview of Current Evidence--Vicki A. Freedman Appendix F Chronic Disease and Trends in Severe Disability in Working-Age Populations--Jay Bhattacharya, Kavita Choudhry, and Darius Lakdawalla Appendix G Trends in Disability in Early Life--Ruth E. K. Stein Appendix H Aspects of Disability Across the Life Span: Risk Factors for Disability in Late Life--Jack M. Guralnik Appendix I Health Care Transition of Adolescents and Young Adults with Disabilities and Special Health Care Needs: New Perspectives--John Reiss and Robert Gibson Appendix J Secondary Conditions and Disability--Margaret A. Turk Appendix K A User's Perspective on Midlife (Ages 18 to 65) Aging with Disability--June Isaacson Kailes Appendix L Impact of Exercise on Targeted Secondary Conditions--James H. Rimmer and Swati S. Shenoy Appendix M Secondary Conditions with Spinal Cord Injury--William A. Bauman Appendix N Depression as a Secondary Condition in People with Disabilities-Bryan Kemp Appendix O Promoting Health and Preventing Secondary Conditions Among Adults with Developmental Disabilities--Tom Seekins, Meg Traci, Donna Bainbridge, Kathy Humphries, Nancy Cunningham, Rod Brod, and James Sherman Appendix P Biographical Sketches of Workshop Committee and Workshop Presenters

When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening. Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care. This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life: Determining diagnosis and prognosis and communicating these to patient and family. Establishing clinical and personal goals. Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done." Table of Contents Front Matter Summary 1 Introduction 2 A Profile of Death and Dying in America 3 Caring at the End of Life 4 The Health Care System and The Dying Patient 5 Accountability and Quality in End-Of-Life-Care 6 Financial and Economic Issues in End-Of-Life Care 7 Legal Issues 8 Educating Clinicians and Other Professionals 9 Directions for Research to Improve Care at the End of Life 10 Conclusions and Recommendations References Appendix A Appendix B Appendix C Appendix D Appendix E Appendix F Appendix G Appendix H Appendix I Appendix J Index

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