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New Book Dispels Myths and Provides Insights into End-of-Life Care for People with Developmental Disabilities

Information helps providers and families make palliative care decisions that are sensitive and person centered

Special pre-publication discount offer on this book until August 1, 2010

Washington, DC (June 1, 2010)—

While care for people with developmental disabilities has undergone revolutionary improvements, it still isn’t unusual to have some continue to wonder why people with developmental disabilities should consider aggressive medical management in specific situations. Further, palliative care for people with intellectual disabilities is inherently controversial and ridden with medical, ethical, and legal complexities for which most professionals receive little training and can turn to very few resources for help. For the first time, End-of-Life Care for Children and Adults with Intellectual and Developmental Disabilities presents a comprehensive framework under which professionals and families can make decisions that are thoughtful, ethical, and most importantly, respect the wishes of individuals with disabilities.  The book is written by a diverse group of authors, including physicians, nutritionists, gerontologists, and social workers.

“Caring for people who are medically fragile or who have life-remitting conditions is emotionally laden. By dispelling some of the myths and providing information on various medical, legal, and ethical issues, David Helm and I hope that people can make decisions that are timely and sensitive and conform to the wishes and needs of those involved,” says co-editor of the book Sandra L. Friedman, MD. Dr. Friedman is section head of Neurodevelopmental and Behavioral Pediatrics at the Children’s Hospital in Denver, Colorado.

End-of-Life Care is unique in that the book brings back the focus of palliative care decisions on respect, dignity, and the needs of the person with whom, or for whom, decisions are being made. Dr. Friedman explains, “While in many instances, there is no ‘right’ or ‘wrong’ way to approach a particular issue related to end-of-life care, certain fundamental ethical tenets underlie the process of making decisions and providing care. Decisions must be made respecting individual preferences and respecting family values within medically indicated treatment plans.”

End-of-Life Care is divided into five sections where readers can learn: (1) Critical events that have affected the current state of palliative care and practice in medicine, law, and ethics; (2) Information regarding medical conditions encountered at the end of life. These include neurological, pulmonary, gastrointestinal, endocrinal, and sensory problems as well as issues associated with behavior, orthopedic and bone health, infections, and metabolism; (3) An in-depth discussion on the many controversies such as Do-Not-Resuscitate Orders and Persistent Vegetative State associated with end-of-life care and guidelines for making decisions that are thoughtful, respectful, and ethical; (4) Strategies on how to address the social, emotional, and spiritual needs of patients, their families, and caregivers; and (5) Practical guidelines and resources on how to support children, adults, and their families in planning for the end of life.


Founded in 1876, AAIDD is the oldest professional association concerned with intellectual and developmental disabilities. AAIDD advocates for the equality, dignity, and human rights of people with intellectual and developmental disabilities, and for their full inclusion and participation in society. Learn more about the organization at

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