Shelter from the Storm: Caring for a Child with a Life-Threatening Condition

Critically ill and unlikely to survive. A recent Harvard University study on pediatric end-of-life care has shown that the medical community is failing such children and their families. Indeed, in their effort to be ever-hopeful and cure-oriented in the face of a child's terminal illness, they neglect to advise parents on the basics of emotional support for all family members, pediatric pain medication, and the need for making plans and worst-case preparations.

Based on the National Advanced Illness Coordinated Care program and the stories and advice gleaned from co-author Joanne Hilden's years of work as a pediatric oncologist, Shelter from the Storm fills this advice-and-caregiving void. A compassionate road map to what the family may have to face, what they may be asked to decide, and how they might want to involve their child in the decision-making, Shelter from the Storm will help parents and caregivers make informed, loving, and protective choices on behalf of their children in the most trying of times.


About the Author
Joanne Hilden, M.D., is the Chair of the Department of Pediatric Hematology/Oncology and Medical Director of Pediatric Palliative Care at the Children's Hospital at The Cleveland Clinic in Cleveland, Ohio.

Daniel R. Tobin, M.D., piloted the FairCare program for peaceful dying at the V.A. Hospital in Albany, New York. He is now expanding the program to a network of other hospitals and consulting for insurers on end-of-life issues.

Karen Lindsey is coauthor of Dr. Susan Love's Breast Book and Dr. Susan Love's Hormone Book.