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

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  • Author:
    David T. Helm and Sandra L. Friedman
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    7 x 10
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While care for people with developmental disabilities has undergone revolutionary improvements, it still isn't unusual for some to wonder why people with developmental disabilities should consider aggressive medical management in specific situations. Further, palliative care for people with intellectual disability is riddled with medical, ethical, and legal complexities for which most professionals receive little training and can turn to very few resources for help.  

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. 

Benefits of End-of-Life Care

  • Provides factual insights into major medical, ethical, legal, and spiritual issues in end-of-life care to help professionals and families make decisions respecting individual preferences and family values within medically-indicated treatment plans
  • Protects people with disabilities who are dying from discrimination and unfair treatment by providing the first comprehensive and concrete framework under which to make major decisions
  • Dispels myths on controversial subjects such as Do Not Resuscitate Orders and Persistent Vegetative State
  • Presents in-depth information regarding medical conditions encountered at the end of life including neurological, pulmonary, gastrointestinal, endocrinal, and sensory problems as well as issues associated with behavior, orthopedic and bone health, infections, and metabolism
  • Helps understand how to anticipate upcoming needs of patients and how to secure resources to assist them for successful planning at the end of life
  • Presents historical and foundational materials in end-of-life care, including critical events that have affected the current state of palliative care and practice in medicine, law, and ethics
  • Provides perspectives from a diverse group of authors including practicing physicians, medical ethicist, attorneys, sociologists, and gerontologists
  • Recognize the social, emotional, and spiritual needs of the patients, their families, and caregivers
  • Identifies the challenge of providing nutritional support at the end-of-life

Related Title

People Planning Ahead: Communicating Healthcare and End-of Life Wishes
People Planning Ahead provides a comprehensive and structured way to ensure that loved ones receive care respecting their wishes and conforming to their personal, cultural, and religious beliefs during times of chronic and terminal illness, or severe disability.

Praise for End-of-Life Care

"Discussing many issues surrounding it, from medical advancements, political debates, ethics, and more, End-of-Life Care will prove to be a useful resource and reference for those who are professional caretakers and are not certain how to deal with caring with terminal cases." 
Library Bookwatch: October 2010

"This book will be most helpful to all human service professionals and care providers, including those who do not work with individuals with developmental disabilities. The issues raised by the authors are human, universal and eventually affecting all of us. This book should be in the library of any professional and care provider.” 
Ludwik S. Szymanski, MD, Associate Professor of Psychiatry, Harvard Medical School 

Comprehensive, and compelling, this book is an essential resource for any professional engaged in planning end-of-life care across the lifespan for individuals with intellectual and developmental disabilities.” 
Elizabeth Perkins, 
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