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.”

Page: 7 of 7

“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?”