End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities

The American Association on Intellectual and Developmental Disabilities (AAIDD),has published a new reference book, End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities, that addresses the medical, social, legal, and ethical issues in end-of-life care that people with intellectual and developmental disabilities face.  A downloadable podcast interview with the author is available here.  Here is the table of contents:





Part I: Historical Perspective

Chapter 1 Constructing a “Good Death”: Historical and Social Frameworks

Chapter 2 End-of-Life Policies and Practices

Chapter 3 Ethical Foundations and Legal Issues

Part II: Medical Conditions and Management

Chapter 4 Complex Medical Problems Affecting Life and Life Span in Children

Chapter 5 Medical Conditions in Adults Near the End-of-Life

Chapter 6 Medical Treatment and Management at the End of Life

Chapter 7 Nutritional Issues in End-of-Life Care

Part III: Current Controversies and Ethical Dilemmas

Chapter 8 Practical Guide to Health Care Decision Making

Chapter 9 Do-Not-Resuscitate Orders and Redirection of Treatment

Chapter 10 Ethical Issues in the Withdrawal of Support

Chapter 11 Forgoing Nutrition in Infants and Children With Intellectual Disabilities

Chapter 12 The Persistent Vegetative State

Part IV: Social, Emotional, and Spiritual Considerations

Chapter 13 Applying the Dignity-Conserving Model

Chapter 14 End-of-Life Through a Cultural Lens

Chapter 15 Spirituality Issues and Strategies: Crisis and Opportunity

Chapter 16 Struggling With Grief and Loss

Part V: Supports and Resources

Chapter 17 Use of Person-Centered Planning for End-of-Life Decision Making

Chapter 18 Supports and Resources for Families of Children With Special Health Care Needs

Chapter 19 Supports and Resources for Adults

Chapter 20 Palliative Care and Pain Management: Resources for Direct Care Providers