Theme: End of Life

The last 24 hours: We were not ready for it. “Wait a minute, we’re off script.”

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The last 24 hours: We were not ready for it. “Wait a minute, we’re off script.”

Parents of a son with SanFilippo Syndrome and their palliative care doctor discuss the last 24 hours of Ben’s life and how they were faced with the question of intubation. Mom: “How did I get in this bad movie? I don’t know what to do and I’m scared.” Dad: “It wasn’t what we’d planned but it gave us time to call our family.” Palliative care helped us feel less trapped and helped advocate for us when we were occupied being scared and sad. Mom describes turning off the machine and everyone being in the room.