The consult was for a 19-year-old man with Duchenne muscular dystrophy who was in the ICU with respiratory distress and weight loss. Given his degenerative disease, establishing care with the palliative care team made perfect sense. It was, by all means, an appropriate consult. As our team sat down at this young man’s bedside, we were joined by his mother. The patient himself would gesture yes and no because speaking was difficult, so out of both fatigue and shyness, he deferred to his mother to answer for him. We introduced ourselves and explained our role with patients and families in the hospital. We asked our usual opening question: “Tell us about your son.” What followed was not the story you would expect to hear, one that would focus on symptoms related to serious illness or questions about advanced care planning. This story was different. A soft-spoken woman explained how she had cared for her son for the past 19 years: a boy she described as loving sports, enjoying music and home cooked food, and smiling almost constantly. When we explored further to elicit her hopes and worries for her son, she described a hope that he would be safe. “Safe?” our team questioned, “Tell us more.” She went on to share that the community in which they …
Language: en
LA - en SN - 0031-4005 UR - http://dx.doi.org/10.1542/peds.2019-1143 ID - ref1 ER -