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

By Daniel TobinJoanne M. HildenKaren Lindsey, et al.

Book Overview

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.

• Format: Paperback
• Language: English
• ISBN: 0738205346
• ISBN13: 9780738205342
• Release Date: December 2002
• Publisher: Balance
• Length: 240 Pages
• Weight: 0.50 lbs.
• Dimensions: 0.6" x 5.3" x 8.7"

Customer Reviews

Like New

The book was like new, the book was in fabulous condition. I have no complaints. I would order from them again and i got a great price for the book.

HIGHLY Recommended Reading for Parents/Family/Friends of Chronically Ill Children...

This book is both a gift of profound compassion and a wise insurance policy. The entire pediatric health care team is always hopeful that a child can and will recover from a chronic illness. Despite this, physicians and nurses at times find discussion of a child's possible end of life and quality of life issues too uncomfortable to discuss for various reasons: they do not want families to lose hope, also- the thought of considering the possible death of a child is the most devastating conversation that the healthcare team and family could ever have. Unfortuntately, the absence of this conversation can leave families of chronic and critically ill children unprepared for the peaceful, supportive, pain-free death that is possible with considerate mindfulness and preparation. Families of an ill child can sometimes unfortunately find themselves unexpectedly and suddenly saying good-bye in a crisis intensive care surrounding. I am both an RN and the mother of a chronically ill/critically ill child...Dr. Hilden's book provides me with the compassion, possible reality, and issues that may lie ahead for my family. I am honored to receive Dr. Hilden's insight and will suggest Shelter from the Storm as recommended reading for parents of children with life-threatening illnesses. Dr. Hildren and Dr. Tobin provide both exceptional caring and compassion as well as a guidebook to plan and consider the unthinkable: my child may not survive his chronic life-threatening disease. And now I walk on...

If you believe knowledge is power. . .

then this book is for you. As the mother of a child with a life-threatening condition, it is easier to remain confident and optimistic knowing that I have a "plan B", meaning a plan of what to do if my child becomes terminal. This is a wonderful guide for parents, families and friends of a seriously ill child: answering tough questions about end-of-life issues without obliterating hope. Written in part by a prominent pediatric oncologist, this book provides concrete examples and suggestions for everyone's worst-case scenario: planning on how to parent through your child's death. Because the book gives plenty of room to maintain hope while planning for the worst, I have found it easy to share with other parents whose child may or may not survive. I highly recommend it.