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The Private Worlds of Dying Children
Winner of the Margaret Mead Award
A classic, moving study of terminally ill children that emphasizes their agency and shows how we can relate to dying children more honestly
“The death of a child,” writes Myra Bluebond-Langner, “poignantly underlines the impact of social and cultural factors on the way that we die and the way that we permit others to die.” In a moving drama constructed from her observations of leukemic children, aged three to nine, in a hospital ward, she shows how the children come to know they are dying, how and why they attempt to conceal this knowledge from their parents and the medical staff, and how these adults in turn try to conceal from the children their awareness of the child’s impending death.
In contrast to many parents, doctors, nurses, and social scientists who regard the children as passive recipients of adult actions, Bluebond-Langner emphasizes the children’s role in initiating and maintaining the social order. Her sensitive and stirring portrait shows the children to be willful, purposeful individuals capable of creating their own worlds. The result suggests better ways of relating to dying children and enriches our understanding of the ritual behavior surrounding death.
A classic, moving study of terminally ill children that emphasizes their agency and shows how we can relate to dying children more honestly
“The death of a child,” writes Myra Bluebond-Langner, “poignantly underlines the impact of social and cultural factors on the way that we die and the way that we permit others to die.” In a moving drama constructed from her observations of leukemic children, aged three to nine, in a hospital ward, she shows how the children come to know they are dying, how and why they attempt to conceal this knowledge from their parents and the medical staff, and how these adults in turn try to conceal from the children their awareness of the child’s impending death.
In contrast to many parents, doctors, nurses, and social scientists who regard the children as passive recipients of adult actions, Bluebond-Langner emphasizes the children’s role in initiating and maintaining the social order. Her sensitive and stirring portrait shows the children to be willful, purposeful individuals capable of creating their own worlds. The result suggests better ways of relating to dying children and enriches our understanding of the ritual behavior surrounding death.
304 pages, Paperback
First published January 1, 1978
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Displaying 1 - 13 of 13 reviews
March 4, 2008
The Private Worlds of Dying Children is a very difficult book to read; the topic is one that we dare not confront. Bluebond-Langner argues that facing terminal illness in children rends our social fabric in ways that we find difficult to manage. Role expectations are thrown into disarray; social identities are threatened.
Western society leads us to expect that children go to school, are in progress to becoming adults as they learn and strive for the future. Parents nurture, provide for their children’s needs, support them physically and emotionally as they grow, and guide them in their progress. Physicians are healers; it is their job to make the children better, to alleviate their suffering, to eliminate their pain or at least to make it bearable. But medical staff and physicians are unable to prevent these children from being ill, from hurting, from dying. Parenting a dying child rips away the usual social roles: “Such parents cannot be rearers, for to what end can they rear the terminally ill?” [p. 214]. Children with leukemia do not attend school. There seems no purpose to their learning. They have no future.
Bluebond-Langner shows how everyone involved practices “mutual pretence.” Parents, hospital staff, and the children themselves know that they are dying, but everyone pretends it is not happening. The author argues that this is done to preserve the social order. Through mutual pretence, all of the participants can continue in their expected roles. Identities are maintained.
The Private Worlds of Dying Children is a painfully sad book. I found myself continually needing to readjust, to set myself aside, to distance myself emotionally from the material, to shift and find a slightly less uncomfortable psychic space from which I could continue reading. Bluebond-Langner’s first-hand reports of conversations with the children are ideal for my dissertation on patient narratives in terminal or chronic illness. She documents, in the children’s own words, how they become aware of the seriousness of their condition, how they learn about drugs and procedures and side effects, and how they begin to understand that the rounds of remission and relapse will end, inevitably, in their own death, even when everyone around them has gone to great pains to hide all of this information from them. The Private Worlds of Dying Children is a deeply relevant examination of narrative, knowledge acquisition through socialization and peer-group relations, and the protective mechanisms that we use to inform social interaction under threatening conditions.
Western society leads us to expect that children go to school, are in progress to becoming adults as they learn and strive for the future. Parents nurture, provide for their children’s needs, support them physically and emotionally as they grow, and guide them in their progress. Physicians are healers; it is their job to make the children better, to alleviate their suffering, to eliminate their pain or at least to make it bearable. But medical staff and physicians are unable to prevent these children from being ill, from hurting, from dying. Parenting a dying child rips away the usual social roles: “Such parents cannot be rearers, for to what end can they rear the terminally ill?” [p. 214]. Children with leukemia do not attend school. There seems no purpose to their learning. They have no future.
Bluebond-Langner shows how everyone involved practices “mutual pretence.” Parents, hospital staff, and the children themselves know that they are dying, but everyone pretends it is not happening. The author argues that this is done to preserve the social order. Through mutual pretence, all of the participants can continue in their expected roles. Identities are maintained.
The Private Worlds of Dying Children is a painfully sad book. I found myself continually needing to readjust, to set myself aside, to distance myself emotionally from the material, to shift and find a slightly less uncomfortable psychic space from which I could continue reading. Bluebond-Langner’s first-hand reports of conversations with the children are ideal for my dissertation on patient narratives in terminal or chronic illness. She documents, in the children’s own words, how they become aware of the seriousness of their condition, how they learn about drugs and procedures and side effects, and how they begin to understand that the rounds of remission and relapse will end, inevitably, in their own death, even when everyone around them has gone to great pains to hide all of this information from them. The Private Worlds of Dying Children is a deeply relevant examination of narrative, knowledge acquisition through socialization and peer-group relations, and the protective mechanisms that we use to inform social interaction under threatening conditions.
June 13, 2025
the actual villain was the TV man who, if you didn't pay him two dollars A DAY, would take the HDMI cable from these LEUKEMIC CHILDREN and leave them to die.
April 9, 2022
this is one of those books that i think will change me forever. the screenplay was so well written that i literally did not move for the entirety of the 130 pages of it. the second half of the book was a quick read but honestly could’ve been skimmed bc the screenplay was so well written. great reminder of how smart kids are both knowledge-wise but also emotionally.
February 3, 2025
Heartbreaking story and an important reminder that children understand more than adults may believe. The discussion of research findings and academic tone made this suitable for course reading, not leisure.
April 30, 2025
I was introduced to this book last year by a remarkable professor of mine, a prominent figure in bioethics research. We jokingly call him the ultimate "guru" of child ethics because of his enormous contributions to this niche field, particularly through his institution, VOICE (Views on Interdisciplinary Childhood Ethics). Yet, it wasn’t until last month, while facilitating a class discussion on childhood ethics, that I finally got my hands on it and read it.
Originally published in 1976, this book remains unsurpassed in its exploration of the deeply private, often invisible worlds of dying children. Think about it, who really wants to talk about dying children? It’s a subject that many instinctively avoid. And yet, children suffer from terminal illnesses all the time, their experiences, and, by extension, their families’ often overlooked because the topic is simply too uncomfortable to acknowledge. But here’s the question: if we continue to turn away, what are we offering future children who might face similar realities, other than our own desperate unpreparedness?
Nothing I have ever read compares to the rawness of this book. Extremely brutal yet surprisingly gentle, striking a chord I have rarely encountered in either fiction or nonfiction. Bluebond-Langner captures how children with terminal illnesses navigate their “private worlds” without a clear set of tools to ease their turbulent journey. She describes how they engage in a coping mechanism she calls “mutual pretense”, a delicate, unspoken agreement in which both the child and those around them know the truth (in this case, mortality) but act as if they don’t, preserving a fragile social order that allows everyone to maintain their expected roles.
Few books have moved me as deeply as this one. It forces readers to confront the ethical and emotional complexities of pediatric terminal illness, a topic that should not remain in the shadows simply because it is difficult. If anything, The Private Worlds of Dying Children proves that educating ourselves on this reality is not just an academic exercise, it is a moral obligation.
Originally published in 1976, this book remains unsurpassed in its exploration of the deeply private, often invisible worlds of dying children. Think about it, who really wants to talk about dying children? It’s a subject that many instinctively avoid. And yet, children suffer from terminal illnesses all the time, their experiences, and, by extension, their families’ often overlooked because the topic is simply too uncomfortable to acknowledge. But here’s the question: if we continue to turn away, what are we offering future children who might face similar realities, other than our own desperate unpreparedness?
Nothing I have ever read compares to the rawness of this book. Extremely brutal yet surprisingly gentle, striking a chord I have rarely encountered in either fiction or nonfiction. Bluebond-Langner captures how children with terminal illnesses navigate their “private worlds” without a clear set of tools to ease their turbulent journey. She describes how they engage in a coping mechanism she calls “mutual pretense”, a delicate, unspoken agreement in which both the child and those around them know the truth (in this case, mortality) but act as if they don’t, preserving a fragile social order that allows everyone to maintain their expected roles.
Few books have moved me as deeply as this one. It forces readers to confront the ethical and emotional complexities of pediatric terminal illness, a topic that should not remain in the shadows simply because it is difficult. If anything, The Private Worlds of Dying Children proves that educating ourselves on this reality is not just an academic exercise, it is a moral obligation.
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May 7, 2025For school
September 6, 2020
This book gives an intimate look into the minds and hearts of children who are dying. It is a difficult read but an important topic for professionals who are working with children with chronic illnesses. My biggest critique is that it is very outdated. However, I still found many aspects to be relevant to this patient population today. It was also interesting to see how far pediatric healthcare has come over the past few decades.
July 9, 2008
This unique study transcends the boundaries of social or psychological analysis, to the degree that Myra Bluebond-Langner distills vast months spent with children terminally stricken with leukemia into a document far more revealing than any study: a play, with voices, of families and children confronting the ultimate mystery and apparent injustice of chance, fate and faith. A single play: one vivid, unforgettable representation of a kind of chaos-theory of grief.
July 10, 2008
This is an eye-opening book into the minds of children facing a terminal illness and their views on their own mortality. It reveals how much we underestimate children's understanding of life and death, and the real consequences of dying.
March 18, 2008
Definitely hard to read, but informative and helpful if you work with this population.
March 29, 2012
Heart wrenching
April 4, 2013
Frustrating to read but extremely helpful for individuals working in the health care profession
June 10, 2008
This is a heartbreaking (non-fiction, anthropological) read, but also astounding.
Displaying 1 - 13 of 13 reviews