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Shelter from the Storm: Caring for a Child with a Life-Threatening Condition
Shelter from the Storm Caring for a Child with a LifeThreatening Condition Author:Joanne M. Hilden, Daniel R. Tobin, Karen Lindsey A wise and compassionate guide to caring for a critically ill child. — Nothing is more excruciating or heartwrenching for parents than caring for a child who is 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. I... more »ndeed, 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.« less