The idea of “brain death” was proposed in 1968, at the very end of the age of medical paternalism. And medical paternalism continues to perpetuate the concept to this day.
The 1968 Harvard ad hoc Committee never stated that these deeply comatose people were actually dead. They said their lives were a burden to themselves and others — acknowledging that these people are not dead, since how can a corpse be burdened?
The parents of Annelise Camp can see that their daughter is not dead: she has vital signs, is warm, has supple pink skin, and is having bowel movements.
When doctors say they want to declare Annelise to be dead, is it any wonder that her parents suspect they are being gaslit?
If doctors aren’t being trustworthy about questions of life and death, who can blame people for wondering what else aren’t they telling us?
This medical paternalism surrounding the brain death diagnosis must stop.
Brain death is an idea without a foundation that only continues for the sake of the organ transplantation business that so quickly came to depend upon it.
It would be more honest to treat neurologically injured people in the same way as people with severe cancer, catastrophic trauma, or multi-system organ failure, and make their withdrawal of support decisions on a case-by-case basis in conjunction with their families.
It’s completely legitimate to tell parents that their child has a poor prognosis. It’s completely ethical to compassionately withdraw medical support at the end of life and allow a child to pass into eternity knowing she was loved.
But it is deceitful to tell parents that a neurologically injured child could somehow be dead already.