{UAH} Little Girl Is Brain Dead: Don't Give Family False Hope

Little Girl Is Brain Dead: Don't Give Family False Hope

Arthur L. Caplan, PhD

 January 22, 2014

When Death Has Happened

Hi. I'm Art Caplan at the Division of Medical Ethics at the New York University (NYU) Langone Medical Center. What should you say to a family when someone dies? Many physicians want to approach the family with compassion and consideration for their loss and their grieving, but I believe that you have to be blunt and direct about the fact that death has happened. The Jahi McMath case, a 13-year-old girl who died after an elective tonsillectomy at Oakland Children's Hospital, certainly makes it clear that that is an important stance to take.

Jahi McMath went in for a tonsillectomy to help with her sleep apnea. She was obese and having problems with sleep, and as often happens, the physicians there recommended that she have her tonsils out, have some tissue removed to open up the airway. Something went terribly wrong. She bled a lot. She had a heart attack. Her brain hemorrhaged. The doctors examined her and determined according to brain-death protocols that she was brain dead. They came out and told the family that she was brain dead and the decision now had to be made about removing life support. The family was angry, shocked, and despondent, and this was a strongly religious family. They heard "brain death, kind of dead, sort of dead, but maybe not really dead" and then they heard the term "life support" and said that they didn't want doctors to take life support away from their little girl.

That case turned into a fiasco. They hired a lawyer. They fought with Oakland Children's Hospital about removing the ventilator from Jahi. Ultimately they got courts involved that required that the ventilator be continued, and the girl's body was removed from Oakland Children's Hospital and sent to an unknown facility where, apparently, ventilation would continue despite the fact that a death certificate had been written for Jahi weeks before and an independent expert had been called in by the courts to verify brain death.

Brain Death Is Death

It's very important to be clear about a couple of things. If you are going to tell someone that a person has died, you have to say death, not brain death. You have to say they have died.

If they ask, "How do you know?" you can say, "We have done a brain death protocol on the patient," or tell them that the person died due to cardiac and respiratory arrest. Being very clear that death has come is important even when trying to be considerate of a family's feelings. Families are going to have heard on the news about all kinds of people in comas or permanent vegetative states coming back, waking up, or somehow being interactive. They will confuse that with brain death, so it's very important to be clear that brain death is death. It has no relationship to other states of brain injury.

Sometimes a metaphor is useful. I sometimes say to families, "Coma is like having a TV set with a picture on it, but it was flipping or you couldn't see it very clearly because there are lines through it, but maybe it can be fixed and the TV set can come back. Permanent vegetative state is all snow on the screen; it's not going to get repaired. There is still some activity but nothing is going to bring the TV back to life. Brain death is the TV set unplugged, with no electrical activity." Whether you like that metaphor or something else, being very clear with families about what the difference is is critical, because they may be inclined to confuse brain death with other states.

No "Life Support" for "Brain Death"

"Life support" is a term I would use very judiciously around families. They hear life and they want to pursue life. You have to say that "artificial support" is going to be discontinued. I would not use the term "life support" around families when it's time to stop.

The McMath case reminds us of one other very important consideration with brain death. Brain death is death, and if you look at the way the media covered that case, there was a headline that appeared that said, "Little girl pronounced brain dead; the issue now is when should she die?" The public doesn't necessarily understand the difference between brain death, coma, and other forms of brain injury, so in talking not only to families but in talking to the media, in talking to the community, in talking at your church or your synagogue, temple, or mosque about what brain death is, it's very important to educate people that there are 2 ways that doctors determine that someone has died.

One is brain death, a total irreversible loss of all brain function. The other is when cardiac and respiratory function are permanently lost. The public needs education, and families need direct blunt conversation, even with caring and compassion coming along with that. Brain death is a flat line. We have to make sure that bereaved families and the public understand that.

I'm Art Caplan at the Division of Medical Ethics at the NYU Langone Medical Center. Thanks for watching.

 

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Cite this article: Little Girl Is Brain Dead: Don't Give Family False Hope.  Medscape. Jan 22, 2014.