Introduction: Defining Cases in Pediatric Bioethics

The history and practice of pediatric bioethics, like medicine itself, is inherently case based. Just as anatomy, pathophysiology, and pharmacology are applied in making clinical decisions for pediatric patients, ethical theory, principles, standards, and frameworks must also be applied to each clinical encounter. Sometimes, this occurs without much thought or controversy, whereas other cases may be marked by the lack of a clear path or a conflict over the right and good decision. But in the clinical setting, unlike the classroom, decisions must be made. Since its inception, specific cases have captured the attention of ethics scholars and helped define pediatric bioethics, challenging existing practice, beliefs, or standards, requiring critical reflection and debate, and sometimes leading to the creation of new theories, understandings, and approaches. In the last 50 years, advances in medical technology, social changes altering the relationship between patients and their health care providers, the rise of the Internet, changes in attitudes about the moral worth of all children, and many other factors have changed the nature of medical decision-making for children and their families. The bioethics movement has expanded dramatically with these changes and has both influenced and been influenced by these changes in societal mores, attitudes, and practices. Yet many questions continue to generate debate. Should children always receive life-sustaining treatment regardless of their level of disability? Whether and when may a physician override a parent’s decision? How can we best respond to suffering? When should an adolescent be allowed to make health care decisions that may carry grave consequences? Are there limits to advocating for one’s own child to receive limited resources? Who defines death? Who determines a good life? How do we consider the interests of a fetus versus the interests of a pregnant woman? How can we best approach disagreement? These questions, exemplified in many of the defining cases that constitute the history of pediatric bioethics, remain as urgent now as when such cases took place.

The mission of the Treuman Katz Center for Pediatric Bioethics is to improve the experience of children, their families, and communities by enhancing ethical deliberation in pediatric health care, education, and research. Since July 2005, the center has hosted an annual summer conference on pediatric bioethics. In 2019, our 15th annual conference sought to bring a historical lens to the field, looking back at some of the cases and issues that helped define and change pediatric bioethics. The 2-day event brought together national leaders and junior scholars from a variety of disciplines to guide a conversation revisiting these cases, their lessons, and their implications for the future. These defining cases are drawn from the world of pediatric practice in which thoughtful people of good conscience can and do disagree, leading to conflicts between sometimes incompatible moral ideals, values, obligations, or interests. Defining cases not only test our beliefs and principles as pediatric caregivers but also exemplify the vital need for pediatric bioethics as a discipline.

This special supplement to Pediatrics includes contributions from each of the conference speakers and from 4 abstract presenters. In each contribution, the authors tell the story of a defining case or cases. The authors provide historical and contextual background and consider how the case impacted philosophical theories, altered legal and ethical thinking, and informs current medical and clinical ethics practice. Finally, the authors consider the lessons that these cases hold for the future of pediatric bioethics. These contributions span a variety of central issues in pediatric bioethics including disability, emerging treatments, decisional authority, uncertainty, best interests, suffering, adolescent refusal, public appeals, transplant, limited resources, and the status of fetuses.

We begin with Norman Fost’s reflections on his participation in the 1970 Johns Hopkins Baby Doe case and the impact that case had on shaping and nurturing the relatively young bioethics movement. Jennifer Kett further considers who the next “Baby Doe case” will be, and Jeanne Krick and colleagues examine the role of uncertainty in contentious treatment decision-making in neonatology. Next, Douglas Diekema and Lois Weithorn revisit the cases of Cassandra C. and Dennis Lindberg to consider the issue of adolescent refusal of life-saving treatment. Lainie Friedman Ross considers cases of adolescents refusing life-saving organ transplants. Aaron Wightman, Michael Freeman, and Aviva Goldberg examine the power of public appeals for limited resources and societal change through the defining transplant cases of Jamie Fiske, Sarah Murnaghan, Amelia Rivera, and Riley Hancey. Dominic Wilkinson and Lanie Friedman Ross each reflect on the Charlie Gard case and the lessons to be drawn for both sides of the Atlantic. Tyler Tate and Annie Friedrich each offer commentaries on the meaning and use of suffering in defining cases. Robert Truog and Maya Scott each examine the Jahi McMath case and draw lessons about the definition of death and working with families in tragic situations. Mary Faith Marshall and colleagues reexamine the case of Ferguson v City of Charleston and its lessons about the consequences of coercive interventions directed toward pregnant women as a way of promoting the interests of the fetus and child on maternal, fetal, and child health. Kate MacDuffie and colleagues further examine the legacy of thalidomide and Bendectin when considering the constraints faced by pregnant women and investigators who attempt to improve maternal, fetal, and child health by performing research on practices considered controversial by some, such as cannabis use to treat pregnancy-induced nausea and vomiting.

This collection of articles demonstrates the evolution and breadth of pediatric bioethics. It illustrates how thoughtful individuals approach challenging cases, bringing to bear the perspectives of different academic and professional backgrounds. Although it is by no means comprehensive, we hope this collection may provide context, ideas, and inspiration for pediatric health care providers and bioethicists in this generation and the next.