The suffering child: Claims of suffering in seminal cases and what to do about them

Abstract

In all of medicine, there is perhaps nothing so distressing as bearing witness to a patient's suffering, especially if that patient is a child. We want to do everything that we can to avoid or alleviate a child's suffering, yet what do clinicians, ethicists, lawyers, or family members mean when they use the term “suffering,” and how should these claims of suffering factor into pediatric decision-making? This question of suffering and what to do about it has played a key role in several prominent pediatric cases over the past decade, including the cases of Charlie Gard, Alfie Evans, and Baby Joseph. These cases have become seminal cases precisely because there is no clear resolution, and the “suffering child” continues to challenge our moral ideals of what it means to live a good life. In this article, I explore the various ways in which the concept of suffering is used in these cases, and I offer new ways in which parents, providers, and all those who work with sick children can approach the suffering child.