Narrative in medicine is a huge part of the human struggle with disease. Another way to say this is, our stories help us cope.
A 70 ish hardworking farmer had a stroke at home and collapsed hitting his head and causing a bleed in his brain. He was rushed to our hospital and placed on life support. The neuro intensivist spent days trying to fix him. He had a drain from his brain to help relieve the pressure, he was on medicines and fluids to correct any imbalances in his electrolytes. Our team came on board to support the family and honor his wishes. They were giving him time to wake up, as sometimes can happen with stokes in the few days after the event. They spoke of his humor, and daily laughter. They said he always told them if he couldn’t laugh and be at home he’d rather die. It became clear that the best case scenario would be him living in a skilled hospital on an breathing machine forever. The family made the hard decision to take the breathing tube out, which would mean he would pass away.
The day this was decided, I was in charge of the process. The family didn’t want to be in the room when we took the tube out. He was breathing well enough, we assumed he’d probably do okay for a day or two off the machine. The family went to lunch and we got everything ready and pulled out the tube and the drain in the brain. I watched him like a hawk, looking for signs that he was struggling, so I could give medicine to take away the struggle. In minutes from the tube coming out he was making changes that indicated he would not last days, but likely die in minutes. I panicked- THE FAMILY WAS AT LUNCH!
I quickly began paging their names overhead in the hospital, and calling cell phone numbers. Doing this I kept peeking at him in his room, watching his breathing space further apart. Finally I spotted the family down the hall, seeing in their movements they had no idea of the urgency to get here. I met them, and calmly tried to prepare them for the sudden changes, that he was close to death. They now rushed into the room. I could see he had already died. They hovered around him, stroking his face and hands all saying their I love you’s. His wife of 60 years bent close to his ear and whispered to him. I knew this was important so I just waited several minutes and then gently said I needed to check him.
I was sure they all knew he had died, but as I put my stethoscope to his chest to confirm it, and then solemnly nodded that he was gone, a new burst of tears issued forth. They hadn’t known. Then in the moments of tears and hugs I heard a daughter say, “At least we were here by his side when he died, he needed us to let go, it turned out so perfectly” I had been thinking how unfortunate it was they had missed it, but now I saw they believed they had made it. I kept my mouth shut with the correction and heard other members now voice similar sentiments on the timing.
I realized now that this narrative would be a part of this family’s life long story. And the story of being there, saying goodbye and ushering him into the afterlife was more crucial than the actual facts. Some may say truth is more important, but for them, the perception offers more healing.