Maybe “just couldn’t help” is the wrong way to say that. Children died while I was a resident. But is it possible that even despite this, we (doctors, nurses, and the myriad other hospital staff) did actually help? Do health care providers need, in the face of those with dire illness, to redefine our markers of success?
We absolutely do.
There once was a little girl who was beautiful and healthy until one day she suddenly was not. Tests revealed she had a universally fatal genetic disorder – the question was not if she would die, but when and how.
The girl declined slowly over many months, and her family and their pediatrician used the time to prepare. They knew she would eventually become so weak that she wouldn’t be able to breathe on her own. Her parents decided against future intubation, knowing that the breathing tube, once in, would probably never come out again. When her lungs started to shut down, her parents planned to let her go, and so filled out all the paperwork that would let that happen.
At home with her family, she died quietly and without pain.
I heard about this girl from her mother, years after she was gone. And the story her mother told was one of love, one of fond remembrance, one in which the sadness of that day still held a kind of beauty. The parents did not have to subsist on hospital coffee, or share elevators with hospital clowns and cooing newborns, or step out of the ER to make phone calls to their relatives while their daughter lay stripped naked on a stretcher, attached to a tangle of wires. They did not have to stop the EMTs from doing chest compressions on her body. Instead, they sat on their couch with their baby girl wrapped in a blanket, and they said farewell.
Recently, I was told the story of a boy I’ll call Paul who came to the hospital, unconscious and barely breathing, and was resuscitated in the ER. His cancer had returned, and there had been no treatments left to try. Paul’s family decided to withdraw care. They wanted to remove the breathing tube that was keeping their son alive, but they did not want to do it in the ICU surrounded by strangers.
