Ethics

Find the Lost Voice: The Role of Pediatric Palliative Care in Advocating for Children Who Cannot Speak for Themselves

Elisha Waldman, MD, and Vanessa Battista, MS RN CPNP

Pediatric palliative care (PPC) clinicians often are called upon when questions are raised about what is the “right” decision for a child. Central to this is making sure that a child’s voice is being heard. Although the legal status of minors is relatively clear, with everincreasing availability of interventions and technology, the moral ground surrounding decision-making seems to grow boggier. Nowhere is this issue more acutely felt than when a child lacks decisional capacity because he or she cannot communicate in a way that allows participation in the discussion.

Because there are many possible permutations, no single approach consistently leads to a quick and clean resolution. Examples are legion: the unborn fetus or infant with a potentially lethal diagnosis, the child with a complex illness who never develops the ability to communicate in words or writing, or the adolescent with a progressive illness who can no longer communicate at all. Often these lives are placed at the center of difficult moral decisions that provoke anxiety (and even conflict) among providers and families alike.