Giving Hope: Conversations with Children About Illness, Death, and Loss

by Elena Lister M.D., Michael Schwartzman Ph.D., Lindsey Tate (Editor)

Overview

The best and only resource you will ever need for helping any child understand and cope with illness, death, and loss

Just as death is inevitable, talking about death is an inevitable part of parenting. Dr. Elena Lister and Dr. Michael Schwartzman offer us the way to have conversations with children that are as much about life as they are about death—conversations that anyone who parents, teaches, or counsels children can have.
 
Giving Hope is a must-have resource that expands our understanding of how to prepare for, initiate, and facilitate these personal and profound conversations. The approach is honest, practical, and compassionate and will benefit a grieving child both now and in the future. Giving Hope provides us with the tools to make our children’s experiences positive and life-affirming.

Product Details

ISBN-13:	9780593419151
Publisher:	Penguin Publishing Group
Publication date:	08/30/2022
Pages:	288
Sales rank:	439,759
Product dimensions:	6.20(w) x 9.00(h) x 1.20(d)

About the Author

Elena Lister, MD, is associate professor of clinical psychiatry at New York-Presbyterian/Weill Cornell Medical Center and senior consulting analyst for grief at Columbia University Psychoanalytic Center. She treats adults and children facing all life issues, specializes in grief, and is a frequently sought-out expert on dealing with loss in schools across the country. Dr. Lister is the coauthor of I Will Remember You: A Guidebook Through Grief for Teens.

Michael Schwartzman, PhD, ABPP, a senior psychologist and board-certified psychoanalyst, has worked with children, adolescents, adults, and families for more than forty years. In addition to his private practice, Dr. Schwartzman is the consulting psychologist at two independent schools for children and lectures regularly to parents and professional colleagues on child development, parenting, and school-related issues. He is the author of The Anxious Parent: Freeing Yourself from the Fears and Stresses of Parenting.

Read an Excerpt

“Elena and Phil Lister,” I said to the receptionist, and she smiled. “They’re ready for you.” We were at our older daughter Molly’s school, not for another dance recital or parent-teacher conference, but to talk to her classmates about death. Her little sister, our younger daughter Liza, was dying of leukemia, and we knew there were questions in the air, some asked, some not, that we felt Molly shouldn’t have to navigate alone. We weren’t sure what to expect.
As we entered the classroom, the third graders were filing in, shuffling, whispering, full of life, and the teachers shushed them, telling them to settle down. There were about a hundred of them filling the room, their faces turned to my husband and me at the front. Many I recognized from years of play dates and sleepovers at our house, although there had been fewer of those recently, and that was part of the problem. What did one do when the sister of a classmate was dying? Were there rules? Expectations? Liza hadn’t wanted us to come in and talk to the grade; she thought it was too private. But we knew her illness was greatly impacting Molly, too, and we wanted to help with that. I scanned the room. Molly had chosen not to sit with us at the front, and there she was, surrounded by her closest friends, in one of the top rows of the tiered seating. She looked sad, scared, and brave, her arms folded across her chest. She knew what we had planned today and why we wanted to do it, as we had talked it through, but still it wouldn’t be easy for her. None of it was. I felt a lump in my throat and swallowed it down, turning to Phil and taking in his loving strength.
We had sent a letter to the students’ parents, explaining what was going on in our family, suggesting they talk to their child before our visit, though adding we would be prepared in case they didn’t. I looked out at the children’s expectant faces. Then we spoke. Briefly and to the point, explaining that Liza was sick with a disease called leukemia, that the doctors had done everything they could but the illness was too strong, that we knew that Liza would die. I said we were very sad about this, and paused. The children sat in silence, attentive, some nodding their heads. I added that even in the midst of our sadness, we were happy that we still had time left with Liza and we planned to enjoy it together to the fullest.
Next we asked the children if they had questions, or anything they’d like to say. Anything at all.
“My grandma died,” a girl piped up.
“Mine, too,” said another.
“I’m sorry,” I said. “Did that make you sad?”
“Yes,” one of the girls agreed. “She used to paint my nails.”
“I almost drowned,” said another child.
“And I broke my arm.”
I sensed they were trying to understand, trying to match their own experiences to Liza’s and Molly’s to relate as best they could.
“Does it hurt?” asked a boy, his eyes wide, looking up at me.
I realized he was asking about Liza’s illness, that there was empathy and compassion in his question and he hoped she wasn’t in pain.
“Yes,” I answered. “It does hurt. Some days are worse than others and then Liza takes medicine to make the pain go away.”
I looked across the room at Molly, seeing how she was doing with all this. She had leaned forward, listening. A friend next to her had draped her arm around her shoulders. The children asked lots of questions: What did Liza do all day, what were her favorite foods, would she come back to school, did she have bandages on. And we answered them all honestly in ways the children could understand. She did have bandages but only a few. She liked to build with her Legos when she could, and play cards, look at books, and watch TV, just as they all probably did, too. We said her favorite foods were an interesting mix: Mike and Ike candy, string beans, tomatoes, watermelon, and her grandma’s roast chicken. That she couldn’t return to school, as she might get infections from other people, and this made her sad, but a teacher gave her lessons at our house and she did homework and was learning to read. She was determined to read before she died.
“Is she nervous?” a boy asked.
I paused. So many answers buzzed in my head. That Liza was scared of leaving us. That she was frustrated by her limitations and angry at her sick white blood cells, but was she nervous? She’d worried when things were vague about her illness, when her oncologist squirmed in the face of her pointed questions, but when he told her she wouldn’t see her seventh birthday though he hoped she would make it to her sixth, her anxiety lessened. This truth, stark though it was, could be understood and processed.I told the children some version of this. That Liza was scared and had questions, but when they were answered truthfully and talked through with me, her dad, and her sister, it helped her. It took the anxiety of not knowing away and let her see that she wasn’t alone. I looked around the room at all these children with their engaged, curious faces and realized that we were going through the same process here. Creating a safe space for questions to be asked with the expectation that they would be answered truthfully. Like a game of catch where the ball is thrown, caught, and returned. A partnership. A conversation.
Phil and I had asked to come into the school to speak to the class that day. It was over twenty-five years ago and there were no formal structures in place for speaking about terminal illness and death, neither within the school system nor the healthcare system. But we needed to be there to help Molly. We’d seen her struggle to explain the situation to her friends and sensed their unease in coming to our house anymore. We had become something to be whispered about or avoided perhaps. We wanted to help the children understand a little so they would be kind to Molly and not be afraid of us. Once approached, the school was more than receptive to our wishes and helped facilitate the visit, and we were grateful for that.
Our conversation with the third graders confirmed several thoughts for me about children: they can handle the truth even on subjects that adults think are off-limits; they want to hear the truth; they are curious, even if fearful, around the subject of death; and having their questions validated and answered honestly creates trust. I knew this already, having seen it in my conversations with my daughters, but having witnessed this same openness in other children, this same need for the truth to address feelings of fear and anxiety, was inspiring to me. I was also struck by the children’s capacity for empathy. Their attempts to equate their own illnesses and mishaps to Liza’s and Molly’s situations were such a heartfelt effort to understand how they might feel and to respond. They were wondering what it was like to be them. I saw that we had gone into the school to help Molly, and we did—over time many of the children showed her kindness afterward and came to the house for play dates and sleepovers as before—but our conversation had done more than that. It had helped the other children, too. They’d been given a safe space and had brought their concerns out into the open to be addressed, and they had been heard. In the back-and-forth of questions and answers, the confusion and worries they may have felt had lessened. What was vague and unknown and possibly frightening had been spoken about. This knowledge made me feel hopeful. Many parents are scared that speaking about death will terrify their children. I would suggest the opposite is true.
After Liza’s death, I was determined to help others who were struggling with the illness or death of their own loved ones, taking strength from the knowledge that listening to our daughters’ worries and responding to them honestly had brought them comfort and eased their anxiety. I was moved to devote my career to preventing children and adults from feeling emotionally alone when facing loss.My involvement with schools has evolved since my husband and I visited the third grade for a couple of hours all those years ago. Since then I have put in place formal structures of support, offering frequent discussions, guidance, and follow-up to help school communities—children, parents, faculty, administration, staff—navigate illness, death, and loss together. I also work with organizations, companies, and religious institutions, guiding adults in how to convey difficult news to children. The understanding that it is beneficial for people and especially children to talk about their reactions and feelings in these situations is a wonderful sign of progress.
In my work as a therapist and grief counselor, I help my adult, adolescent, and child patients speak about all issues, including death and loss, and to learn to talk to the people in their lives about them, knowing that what is mentionable is manageable. That there is value in having conversations in order to address fears and process emotions to get through the pain to the other side, where engagement in life and connection to others is possible again. Where hope can flourish.

Table of Contents

Authors' Note xi

Prologue 1

Chapter 1 Why Is It So Hard to Deal with Death? 13

Chapter 2 The Case for Talking with Your Child About Death 25

Chapter 3 Know Your Own Thoughts and Feelings About Illness and Loss 37

Chapter 4 Seizing the Opportunity to Talk About Death 51

Chapter 5 The Who, When, Where, What, and How to Tell 65

Chapter 6 Why Tell the Truth-and How to Do It 83

Chapter 7 Your Child's Reaction-Keeping an Open Mind 97

Chapter 8 Name the Experience: What's Mentionable Is Manageable 109

Chapter 9 Grief and Mourning: The Immediate Aftermath 123

Chapter 10 When a Loved One Has a Terminal Illness 147

Chapter 11 Talking to Your Child About a Death by Suicide 169

Chapter 12 Talking to Your Child About Death in the Media 185

Chapter 13 A Death Within the Immediate Family: Specific and Practical Support 201

Chapter 14 There Is Always Hope … but It May Need to Be Redefined 221

Resources 239

Acknowledgments 255

Index 265

Editorial Reviews

I am so grateful for this important book, a resource that is sorely needed. We have a duty to our children to offer them a clear and genuine hope when facing the realities of death and dying. Dr. Lister and Dr. Schwartzman have given us a powerful tool to help us do that work and do it well.  Jesus said, 'Let the little children come to me.' We must do no less.”
–The Most Rev. Michael B. Curry, Presiding Bishop of The Episcopal Church and author of Love is the Way: Holding on to Hope in Troubling Times
 
“A book of gentle wisdom, indispensable in our culture of denial, Giving Hope is a forthright and compassionate guide to speaking with children about death and grief in ways that support the resilience of the young soul.”
—Gabor Maté, MD, author of The Myth of Normal: Trauma, Illness, and Healing in a Toxic Culture
 
"Ultimately, this is a book about truth, courage, empathy, and respect for children who must learn to live with loss and their parents who must guide them." 
–Steve Leder, author of The Beauty of What Remains
 
“What a gem you are holding! No less, about, perhaps, the hardest of subjects there ever was. The authors have eased what is easable, and they've held kind space for the rest. Dip in and out to suit, or read it straight through. You’ll learn about the unfathomable, about the inner life of kids, how to be there for them, and you’ll learn a lot about yourself, too.”
—BJ Miller
 
“These authors give the incalculable gift of presence, guidance, and clarity. How to talk to siblings. How to talk to classmates and the kids’ friends and other parents. How to talk to the school.  When the unimaginable actually happens, we need help from people who have been there and can light the way. This book, miraculously, is that help.”
—Diane E. Meier, MD, Professor, Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai

“Giving Hope is a compassionate and practical guide for parents who need to have the hardest and the most important conversations with children, announcing and explaining death and loss — this is a book which will support adults in speaking truth and providing comfort when children need it most.”
–Perri Klass, MD, Professor of Pediatrics, New York University, and author of The Best Medicine

“Giving Hope is a remarkable book by two sensitive, experienced therapists who deal brilliantly with the subject—often neglected—of how to talk with children about death and dying. With straightforward, illustrative examples, the authors suggest that kids often create their own magical theories to make sense of the world. The book demonstrates that children can better understand the universality of death as a part of life and cope with loss only if the parents themselves have dealt with their own grief about the death of a loved one, and thus find hope for the future in creative and productive ways.”
–Clarice J. Kestenbaum, MD, Professor of Education and Training in the Division of Child and Adolescent Psychiatry Emerita and Professor of Clinical Psychiatry, Columbia University Vagelos College of Physicians and Surgeons
 
“Talking with children – especially your own – about serious illness and death often feels overwhelming, but the authors provide solid reasons about why it is nonetheless critical.  Through readily accessible explanations and numerous examples of honest and clear communication drawn from the experiences of the authors and their patients, this book provides practical guidance on how to initiate these conversations.  In so doing, Giving Hope gives parents and caregivers some hope that they can help their children successfully navigate family tragedy and loss.”
—David J Schonfeld, MD, Director, National Center for School Crisis and Bereavement at Children’s Hospital Los Angeles and author of The Grieving Student

“Giving Hope is a wonderfully written book about a very difficult topic, talking to children about death and loss.  The authors give useful advice while expertly weaving stories from their lives and their patients to illustrate common situations, questions, and pitfalls.  Two incredible aspects of the book are their use of planned repetition to reinforce important points from earlier in the book and telling the reader of what is yet to come; just as you are about to ask a question in your mind about a topic, they let you know when those answers will come in the chapters ahead.  Additionally, they summarize important advice throughout the book in bulleted points and take aways that make it clear what they are emphasizing and make the advice easily accessible and usable.  As a pediatrician who communicates with families on difficult topics on a regular basis and teaches these skills to learners, I took away valuable lessons regarding taking stock of what I bring to a situation from past loss and teaching others to do similar, as well as many other helpful tidbits to share with families as they face loss in their lives.  It is a  wonderful, accessible and important read for people dealing with loss in their lives and for those who support families dealing with loss.”
–Susan Bostwick, MD, MBA, Weill Cornell Medicine, Professor of Clinical Pediatrics
 
“As an educator of young children for over 35 years, I am always on the lookout for resources to guide my teachers and our parents through the most difficult challenges of caring for children.  Sharing, explaining and comforting children in the face of losses, including death, is one of the most demanding tasks we confront.  Drs. Lister and Schwartzman have created the most simple, readable, yet psychologically-sophisticated guide to date.  This useful resource acts as a compassionate and experienced companion to every well-meaning adult who finds themself unprepared, bewildered, struggling or even overwhelmed with their own grief and regret. Practical advice on how to share sad news, what to expect from yourself, what responses are “normal” from children, and how to manage unexpected responses are all addressed along with guidance about how to respond to questions when you have no answers, what to do if you say the wrong thing, and how to promote resilience and model empathy for children.  I cannot recommend this book strongly enough!”
—David O’Halloran PhD, Headmaster, Saint David’s School

“Lister and Schwartzman’s sensitive, insightful book is both practical and profound, an important guide for parents wrestling with one of their most challenging responsibilities. Enriched by poignant personal stories from decades of clinical practice, Giving Hope underscores the power of honesty in situations where we are inclined to hide the truth, and provides the vocabulary for the tough conversations necessary to build a foundation of trust and resilience.”
–Miguel Sancho, author of More than You Can Handle
 
“This is such an important book at a very important time in our history. It is a topic which is very important to me, and I suspect many other parents. From the spring of 2016 to the summer of 2021, my children experienced the loss of a favorite uncle, their loving grandmother, and the patriarch of our family, their grandfather. My husband and I instinctively knew that these life changing losses were also an opportunity for us to sharpen up on parenting skills we had not used as much up until that point.  How would we talk to our children about loss and grief? What should we say? All three children were different ages so should we have different approaches? How much information was too much? Even though we did not have the answers to these questions we knew that it was an opportunity to teach and model for them just as we have for their whole lives. This book has the words and guidance I wish I had in my head and heart as I approached these important conversations with our children.  While it is grounded in sound professional advice from experts in the field, I appreciate its practical application.  I particularly loved the takeaways in each chapter. As parents we hope that the skills  that we teach our children will be sustained during adulthood. There is no difference with the topic of learning how to cope with loss and grief which they will have to confront at different times across the span of their lives. Equally as important, it creates space for the cultural differences that exist in families. As an African American family with Caribbean and Southern roots it was important for us to be able to apply our own values and unique family structure.  This book not only helps to make us better and more informed parents, it helps to deepen the bond between parent and child while creating a better humanity for us all.”
—Anne Williams-Isom Esq. Former CEO Harlem Children’s Zone

From the Publisher