Shelter From The Storm: Caring For A Child With A Life-threatening Condition [Paperback]

Joanne Hilden (Author), Karen Lindsey (Author), Daniel R. Tobin (Author)

Book Description

Publication Date: December 17, 2002

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.

Editorial Reviews

Review

"Empowers parents to ask the right questions...A sensitive and useful resource." -- Library Journal 5/1/04

"Truthful, compassionate information presented in a practical way is always helpful. Shelter from the Storm does exactly that." -- Respiratory Care March 2004

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.

Product Details

• Paperback: 220 pages
• Publisher: Perseus Publishing; 1 edition (December 17, 2002)
• Language: English
• ISBN-10: 0738205346
• ISBN-13: 978-0738205342
• Product Dimensions: 8.7 x 5.3 x 0.6 inches
• Shipping Weight: 9.6 ounces (View shipping rates and policies)
• Average Customer Review: 4.2 out of 5 stars  See all reviews (4 customer reviews)
• Amazon Best Sellers Rank: #981,560 in Books (See Top 100 in Books)

Customer Reviews

Most Helpful Customer Reviews

9 of 9 people found the following review helpful:

5.0 out of 5 stars If you believe knowledge is power. . ., June 4, 2004

By A Customer

This review is from: Shelter From The Storm: Caring For A Child With A Life-threatening Condition (Paperback)

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.

6 of 6 people found the following review helpful:

5.0 out of 5 stars HIGHLY Recommended Reading for Parents/Family/Friends of Chronically Ill Children..., November 29, 2005

By 

Z Team Mom (Petaluma, CA United States) - See all my reviews

This review is from: Shelter From The Storm: Caring For A Child With A Life-threatening Condition (Paperback)

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...

2 of 2 people found the following review helpful:

2.0 out of 5 stars Not Impressed, February 15, 2007

By 

S. N. Mendivel "Espíritu" (Ca, USA) - See all my reviews
(REAL NAME)   

This review is from: Shelter From The Storm: Caring For A Child With A Life-threatening Condition (Paperback)

I understand the concept of this book. Want to know why I understand it? Because they spend more than HALF of the book saying,"The purpose of this book is to.." It takes too long to get to the point. It has great information about medical procedures in simple language, and some advice about what to expect with a dying child. Overall, this book could have been more. The authors get too wrapped up in themselves and fail to deliver to parents what they keep promising to give. It's a nice book for supplemental reading, but there are better titles out there that will offer true counsel and detail about disease and the effects thereof (On Death and Dying, etc). Also, if you are a parent that is truly struggling with these issues, take full advantage of the Child Life Educator/Specialist staff at your hospital. If there isn't a program like that, then recommend one because those people are true healers.