When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families


“We are in need of medicine with a heart. . . . The endless physical, emotional, and financial burdens that a family carries when their child dies . . . makes you totally incapable of dealing with incompetence and insensitivity.”

The full text of this book is free online via the link below.  The writing is very personal and heartfelt and the book is broken into several important themes:  patterns in pediatric palliative care, communication, ethics and legal issues, financing pediatric palliative care and more.   This book has a strong voice for what family and patient centered medicine should be.


Institute of Medicine of the National Academies



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Marilyn J. Field and Richard E. Behrman, Editors