Speaking candidly with terminally ill children can be a challenging and at times daunting task. After decades of debate and a wealth of research, it has become increasingly accepted that open and honest communication is necessary for the psychological well-being of these patients. Dietrich Niethammer, a pediatric oncologist, recently published Speaking Honestly with Sick and Dying Children and Adolescents, which provides a comprehensive digest supporting the notion that honesty is the best approach for this patient population.
Niethammer’s book offers a tour of formerly controversial questions that physicians, psychologists, anthropologists, social workers, and parents caring for sick and dying children have asked throughout history: how much do terminally ill children and adolescents actually understand about their illness and how much should they be told? Niethammer walks the reader through English, French, and German publications that have addressed these particular questions. He unveils the reasons why clinicians and caregivers have for too long avoided an honest approach with children.
Because children and adolescents do not often voluntarily express their feelings, many clinicians have presumed these children are not actually processing their prognosis. Historically, this presumption has made it easier for many caregivers to avoid the uncomfortable conversations. Based on his own personal experience as well as perspectives from other researchers, Niethammer strongly argues that even without complete candor from those around them, these children are considering their illness. Niethammer quotes Emma Plank, a specialist in therapeutic education, who wrote a book in 1971 entitled Working with Children in Hospitals. She wrote, “Children always observe and sense situations which adults wish and believe they did not see. Invariably they sense the strained and sinister, and if not helped to clarify what they think happened, the adults’ silence may increase their fears in fantasy, rather than spare them sorrow.” Neithammer praises Joel Vernick and Myron Karon for being pioneers in their day. Vernick, a social worker, and Karon, a pediatrician, published an article in 1965 entitled “Who’s Afraid of Death on a Leukemia Ward?” Vernick had worked closely with 51 children with leukemia. He and Karon described the insights these children had with respect to their prognosis, despite the lack of honesty and direct communication from the medical team. They also revealed the impact that silence and evasiveness can have on the psychological well-being of these patients. Niethammer states Vernick and Karon “recognized that the subterfuges were preventing the development of a supportive relationship between the children and themselves. They understood that children fall silent when they accept lies outwardly but in reality feel abandoned with their fears.” Neithammer carefully traces the medical community’s grasp on the extent to which these patients appreciate their terminal condition as well as the major breakthroughs in research that have brought us to our more enlightened understanding today.
By sharing his personal experience and a meticulous chronicle of countless publications, Niethammer encourages the reader to ask a key question: why let these children struggle alone? Given the constantly evolving medical advancements, children are now living longer and therefore will have more time to confront their illness. Despite historical misunderstandings surrounding this issue, Niethammer’s book urges caregivers to be open and honest with terminally ill children in the hopes that they feel less alone and are better able to cope with their reality.
Fortunately, a more honest approach with these patients is more widely accepted today. Unless the reader is interested in the evolution of this topic, I would not consider this book the most practical resource. Based on the title, the reader might hope or expect to gain insight into concrete strategies to candidly engage terminally ill children. However, this book does not serve as a “how-to-manual.” Rather, Niethammer offers a comprehensive digest of the schools of thought and past approaches on communicating with these patients while simultaneously weaving in his experiences and perspective. As long as the reader opens Niethammer’s book with this understanding and hopes to gain a more historical perspective, then it can be considered an engaging resource for clinicians, social workers, psychologists, parents, and anyone else caring for sick and dying children and adolescents.
- Copyright © 2013 by the American Academy of Pediatrics