Pediatric Suffering and the Burden of Proof

The alleviation of suffering has always been central to the care of the sick. Yet as medical technology has advanced and life-sustaining treatments multiplied, medicine's capacity to both prevent and create suffering has grown exponentially. In pediatric medicine, the ability to stave off death with life-sustaining treatments allows children to survive but also to suffer in ways that are diverse and unprecedented. However, although parents and pediatric clinicians broadly agree that all children can suffer, there is little published literature in which researchers analyze or clarify the concept of pediatric suffering. This gap is worrisome, especially in light of growing concerns that the label of suffering is used to justify end-of-life decision-making and mask quality-of-life determinations for pediatric patients with profound neurologic impairment. Moreover, the awareness that some children can experience suffering but cannot communicate whether and how they are suffering creates a problem. Does the determination of suffering in a nonverbal child lie in the judgement of clinicians or parents? In this article, I will address several important questions related to the suffering of children through an analysis of two prevalent conceptualizations of pediatric suffering and suggest a possible avenue forward for future scholarship.