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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Goals of Care

"To have the fortitude to push the medical team, from whom you are looking for an honest answer, was so frustrating."

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"To have the fortitude to push the medical team, from whom you are looking for an honest answer, was so frustrating."

"To have the fortitude to push the medical team, from whom you are looking for an honest answer, was so frustrating."

Parents Jordan and Julia describe how the vague and non-specific prognostication and conversation their medical team had with them was not helpful; they wanted an honest answer and clear options. “It was only when I made it very clear [what quality of life meant to me], that was when they were able to have the conversation with me. They could see how compromised she was. Why would they offer all of this care?… To do what?”

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