Journal of Pediatric Epilepsy 2020; 9(03): 102-104
DOI: 10.1055/s-0040-1708857
Book Review

Bioethics in the Pediatric ICU: Ethical Dilemmas Encountered in the Care of Critically Ill Children

April N. Sharp
1  Department of Pediatric Neurology, The Johns Hopkins Hospital, Baltimore, Maryland, United States
› Author Affiliations

Miller-Smith L, Finnsdóttir Wagner A, Lantos JD, eds. Bioethics in the Pediatric ICU: Ethical Dilemmas Encountered in the Care of Critically Ill Children. 1st ed. New York City: Springer, 2019 (166 pp). List price: € 83.19. ISBN 978-3-030-00942-7

Pediatric neurologists are no strangers to the complex clinical and ethical issues taking place in the pediatric intensive care unit (PICU) on a daily basis. Whether it is during hospitalization or in the outpatient clinic, we care for many children who have or will have spent time in the PICU for a critical illness. These illnesses may be primarily neurological, in which case neurology consultation is often a central element of their care, or they may be systemic and causing exacerbation of their chronic neurological conditions. Either way, neurologists become intimately involved in the care of critically ill children. Thus, it is important for pediatric neurologists to understand the complexities that contribute to PICU care recognizing that ethical concerns underlie many of these complexities. The aim of this review is to evaluate the utility of Bioethics in the Pediatric ICU for pediatric neurologists and epileptologists.

This book is written by pediatricians and bioethicists, two of whom are intensivists, for pediatric intensivists. It calls for “thoughtful attention to the complex ethical environment of the PICU” (page 1). The authors are explicit in the introduction that this text is not intended to provide answers to medicine's biggest challenges, and there are no “simple formulae for difficult ethical dilemmas” offered (page 3). Instead, the book is written to promote reflection upon and conversation about ethical issues in the PICU and their effects on everyone involved. There is particular emphasis on history, both of pediatric critical care itself and of the controversies that commonly arise in the PICU. Therefore, this book is not recommended for anyone looking for a comprehensive set of tools or resources with which to address specific ethical issues although some chapters do provide helpful resources intermixed with the discussion.

Chapters 2 and 3 explore the history and evolution of pediatric critical illness and critical care. Anyone interested in the history of medicine will enjoy these discussions. The history, while interesting in its own right, also sets the stage for how many of the ethical dilemmas have evolved with pediatric critical care. These chapters are not vital to understanding the ensuing ethical issues, but they provide helpful context that will be referenced throughout the remaining chapters.

Chapters 4 to 6 focus on shared decision-making particularly at the end of life, determination of death, and the difficulties associated with defining medical futility. These chapters are the most relevant to pediatric neurologists. Whether in the PICU, elsewhere in the hospital, or in the outpatient clinic, we participate in many difficult discussions, including new life-limiting neurological diagnosis, poor neurological prognosis after a systemic illness or event, and choosing therapies with indeterminate benefits and risk of harm. Chapter 4 highlights some of the challenges faced in these conversations as well as the importance of good communication with patients and their families. Chapter 4.5 “key communication skills” details, one method of communication that can be used in these difficult conversations and references others. It also includes an exploration of emotions, both those of patients and families as well as providers. Recognition and processing of emotions is often neglected by providers, likely due to discomfort and lack of training (or inappropriate training as detailed in the chapter), and this brief reflection on the role of emotions is a worth read by anyone engaging in difficult conversations, that is, all neurologists.

Many pediatric neurologists participate in end-of-life discussions, being most intimately involved with cases of possible brain death. The majority of Chapter 5 explores brain death. It starts with a historical perspective of death and how brain death came to be recognized. Neurologists who regularly perform brain death evaluations should be familiar with this history and the controversies that still remain, and this book provides a thorough but succinct overview of both. Despite national guidelines and hospital protocols, many brain death evaluations become quite complicated. Understanding the potential misunderstandings, reactions, and controversies of brain death will allow better planning of both the clinical evaluation as well as the communication with families about the process and its meaning. The importance of good planning and good communication is highlighted in the chapter. Being thoughtful about brain death will hopefully lead to better acceptance of death when it is declared and prevent increased stress on already grieving families.

Chapter 6 explores futility through the lens of intractable disagreements. Futility is a weighty and often emotionally charged ethical issue; in practice, it is easier to recognize than to define. It is often associated with pursuing aggressive therapies or offering procedures or technology, but neurologists also face futility in other aspects of clinical practice, such as whether to enforce compliance with seizure medications in a child with a severe epileptic encephalopathy or another life-limiting diagnosis. Thus, it is important for providers, including neurologists, to understand the factors playing into disagreements about futility as well as strategies to resolve the conflicts. This chapter unfortunately uses an excess of case examples to illustrate the complicated web of futility, and thus it felt longer than it needed to be. The theological digression in 6.7 caught me off guard. While recognition of religion's role in understanding futility is a necessity, the lengthy recounting of the case from Miller's book followed by a theological analysis felt out of place in a book that is otherwise fairly succinct. The chapter ends with a recommendation to “find a middle ground” (page 89), which despite being appropriate advice, seems like an underwhelming conclusion to a still elusive topic.

Chapters 7 to 9 are less directly relevant to pediatric neurologists. We are however frequently involved in the care of chronically critically ill patients, and it is helpful to recognize the unique challenges faced by this relatively new subset of patients.

The final chapter shifts the focus to providers (and other multidisciplinary team members) and the issue of moral distress. Chapter 10.1 identifies the PICU as “a cauldron of moral distress” (page 147), but pediatric neurology is also a cauldron of moral distress. From a new epilepsy diagnosis to declaration of brain death, we often meet patients and their families on the scariest and most emotional days of their lives. We participate in many difficult discussions, frequently give bad news, and provide neurological prognostication that factor heavily in end-of-life decision-making. The burden of these responsibilities is undeniable. As is emphasized nicely in the chapter, moral distress is an obligatory component of the job but to combat burnout, providers need to recognize it and address it instead of letting it smolder. The authors do a nice job of referencing burnout and the importance of wellness without belaboring the topics.

A quick comment on formatting: the text contains a fair number of typographical errors, often omission of small words, that made it cumbersome to read at times and distracted from the gravitas of the content.

Overall, I enjoyed perusing this text and contemplating the many ethical issues we encounter in clinical practice. The book is most useful for its historical perspective and for providing questions intended to spark reflection and conversation. Anyone looking for a quick reference guide for ethical topics should look elsewhere. The concepts themselves are most directly relevant to inpatient neurology consultants and neurointensivists, although these issues permeate pediatric neurology due to the complexities of the brain and its role in understanding life, identity, and death. Outpatient epileptologists are also faced with difficult conversations when giving a new epilepsy diagnosis or discussing long-term implications of intractable seizures. (A “benign” epilepsy diagnosis is anything but benign to the parents of a previously healthy child.) Pediatric neurologists will benefit from having a more facile knowledge of bioethics, ultimately conveying the benefit to our patients and their families.

Publication History

Received: 28 January 2020

Accepted: 21 February 2020

Publication Date:
30 March 2020 (online)

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