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