I am a professor of death. I have helped hundreds of students learn about dying, and still can't think of anything harder than losing someone you love. We have been hearing about death all week in the news. In Texas, a woman lays brain-dead in the hospital. Her husband wants all tubes removed. She is pregnant so administrators are citing law and keeping her on life support. In California a young girl is the center of another ethical-technical debate. After a surgery that should have been routine, Jahi McMath developed complications and was declared brain-dead on December 12, 2013. Her family balked at the idea that she would not recover. They could not understand that she is really dead despite being on a ventilator and having a heartbeat. After all, we call it life support, right?
So what does death have to do with it? These days death seems more complicated than ever before. It used to be that you were dead when your breathing and heart rhythms stopped. The advent of the EEG and the ability to monitor brain waves added a whole layer to understanding brain function. In 1968, an ad hoc committee at Harvard began a discussion about a concept called brain death. There are so many clinical terms describing the details of brain function. It can get very confusing. What do the terms brain death, whole brain death, persistent vegetative state, and coma mean any way? We want to know, when are we really dead?
In my years as a nurse working in places like neurology intensive care and the emergency room, I have seen more than my share of death. In my own life I have watched people I love die and have cradled them in my arms as they took their last breath. I have learned to make friends with death in order to live.
A man I took care of once in the ICU was brain-dead. The cause was a viral encephalopathy. His young wife was religious and couldn't bear to take him off the machines. But brain death is death. The body cannot continue to function without the impulses from the brain. These are hard facts. No one wants to believe that a loved one is really dead. Be assured though, that no matter how far someone might run (from California to New York looking for cures, for instance) it won't change the outcome.
The only thing we can change is our attitude about death. We can learn about it. We can plan for it. We can talk to our loved ones about it. We can live our lives the way they should be lived. All of this takes inordinate amounts of courage because death is scary. Living takes courage, too. If we can respect death as inevitable, instead of ignoring it for as long as we can before the health problems set in, we can live with a renewed sense of passion and wonder. The world around us can be a truly amazing place. The knowledge of our own mortality can even be the fire in our belly that pushes us to our maximum potential. Life is grand if we know we are dying. Ask my student Lindsay. Diagnosed with a brain tumor at 16, she has good days and bad days. On good days we sometimes would do things like roll around in the autumn leaves. On one bad day we were doing a movement exercise in class. Feeling too weak to participate, she sat out. In a beautiful act of kindness I watched another student, a big guy on the football team, walk over and ever so gently lift her up. He put her on his back so she could dance with the class. Life is like that sometimes. We need to be carried. My students sometimes overwhelm me with their compassion.
Jahi's family needs that kind of fierce compassion. They are in the middle of a tragic loss and the grief they experience is profound and complicated. Keeping their daughter on life support will not give them the comfort they seek. The real support they need is for the rest of us to leave them alone. It is not helpful for pundits to analyze their actions or for hospital staff to call their daughter a corpse. They are acting out of a basic sense of protection for their child. They deserve our empathy. We can all understand holding on to any shred of hope. For them this is not a cause, it is their daughter. The only thing we can ever change is our attitude about death. Inevitably the day will come and they will need to lay their child to rest. In Texas a husband will bury his wife. On that day they will need to be gently carried. Love will have everything to do with it.