Decision-Making: We created a space where we examined what the Next Steps are.

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss how they considered whether to have spinal surgery (fusion) for their son and the role that palliative care helped them in making multi-faceted decisions. It was a ripple effect and we needed multiple doctors to consider the many dimensions. The interventions being considered in their entirety Had To Benefit Him. Doctor: “We get so confused as a medical profession when we say, ‘Well, he’ll NEED a g-tube. You may need a G-Tube to live for a long time but you may not need a G-Tube to live the kind of life you want to live.”