by Arthur Caplan Ph.D.
Concepts matter in doing the right thing in medicine. This could not be more obvious then the utter confusion on display over the concepts of ‘brain death’ and ‘life support technology’ that has resulted in two dead people being kept on artificial life support in California and Texas.
In Oakland, California 13 year old Jahiu McMath has been maintained on machines since an elective tonsillectomy went horribly wrong on December 9. She has been in the ICU on life-support at the Children’s Hospital since then.
In Forth Worth, Texas, Marlese Munoz has been on machine support in the ICU at JPS Hospital since, without any warning, last November 26th, she suffered a pulmonary embolism. She was then 14 weeks pregnant.
In both cases Jahiu and Marlese have been declared brain dead. In both cases there is a huge controversy over whether their ‘life-support’ can be stopped. In both cases confusion and misunderstanding about brain death and life-support have led to outcomes that make no ethical sense at all.
For Jahiu her parents do not want the machines to be disconnected. They are praying for a miracle. A judge has ordered life-support continued at least until December 30th.
In Marlene’s case, her husband wants the machines stopped. But the hospital refuses citing a Texas law that says, “A person may not withdraw or withhold life-sustaining treatment … from a pregnant patient.”
What is incredible about both cases is that neither the parents of Jahiu McMath or the state of Texas should have any say whatsoever in stopping the discontinuation of life-supporting technology for someone who has died.
Brain death is death. It has nothing to do with being a coma. It does not refer to a permanent vegetative state. When it is pronounced using the standard tests and diagnostic procedures, a person is dead. When a person is dead there is no longer any possibility of ‘life support’ by any technology or machine. When a person is dead, life support has to end since regardless of what parents, judges or legislators might want to believe no physician can do anything to treat death.
When doctors say ‘brain dead’ instead of dead they confuse family members, the media, judges and the public. Calling someone brain dead makes it sound like they are almost dead, sort of dead, kind of dead but not really dead—which they are.
When doctors or others talk about stopping ‘life-support’ on a brain dead person they make it sound like they are ending care for a living person. But, they are not allowing anyone to die. In removing life-supporting machines from the brain dead doctors are simply engaged in one of the last mandatory acts they must perform when someone has died.
Both California and Texas state law realize the reality of what brain death is and what it means. Both states permit the cessation of all treatments for the dead. Both states indemnify doctors against any penalties for doing so when death has been properly diagnosed.
There is no reason for the doctors or administrators at the Children’s Hospital in Oakland to have listened to Jahiu’s parents once, tragically, she had died. There is no reason JPS Hospital in Fort Worth should not immediately honor Marlene’s husband’s and family’s wishes and disconnect all treatment and technology. The fact that both are still on life-supporting technology is disrespectful to them. It is also inexcusably confusing to all the rest of us who may also one day have to face the reality of the limits of medicine when a loved-one dies while on life-support.