Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how the issue of a feeding tube was interwoven with all these other systems and decisions. We wanted all the doctors in the room together talking to each other: “If we fuse his spine, what’s the impact on his GI tract?” We wanted to feel like we’d had an open dialogue, not just a directive. Doctor: It’s helpful to think about what the benefits/pleasures are of feeding by mouth vs what are the burdens. The Palliative Care role is to introduce the good questions to examine.

Father: Palliative care helped us, the parents, make the decision, but it also helped all the providers broaden their perspective and understand the whole patient.