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When doctors say ‘brain dead,’ what do really they mean?

The term “brain dead” has, sadly, been in the news lately. In two cases, neither of which is in Pennsylvania, the families of a patient declared brain dead have asked the courts for help. In one case, the family wants to keep the patient on life support; in the other, the family wants to end life support.

The first patient is a 13-year-old girl. Her family and the hospital were at loggerheads over life support. The family believes she is alive, but the hospital insisted that the girl be removed from life support, as require by hospital policy.

A different hospital refused to take the second patient off life support, not because there is a chance she will survive, but because there is a chance her unborn child will survive. The hospital is following state law in this case, not just internal policies. (According to Westlaw, Pennsylvania has a similar law, though the Commonwealth has included some conditions.)

This is never an easy subject to discuss, even if you or a loved one is not involved. Part of that discomfort could be the result of a lack of understanding of brain death, according to Art Caplan, a nationally-known professor of bioethics. In fact, Caplan says, even doctors don’t fully understand the term.

Doctors should make the diagnosis based on guidelines developed by the American Academy of Neurologists. The patient must be completely unresponsive, with a complete absence of brainstem reflexes, and, importantly, the patient must not be able to breathe on his or her own. There is, so far, no cure or treatment; there is no hope of recovery. The only way to keep the patient alive is through what the AAN refers to as intensive life support.

But brain death is rare, and not every doctor in every hospital has the experience necessary to make the diagnosis — or to explain it to families. As one professor of neurology says, the family hears the term “life support” and focuses on the word “life.” It is important for doctors to be clear that the body will not come back, ever.

Clarity is important so the families can understand the patient’s condition. It is also important for legal reasons. If the patient’s condition is the result of negligence, a damage award will be based in part on whether the family has ongoing expenses for the patient’s care or whether the family has permanently lost the patient’s companionship or earning potential. Is it an injury claim or a wrongful death claim? It could make a difference to a jury — and, of course, to the family.

Source: Modern Healthcare, “Not all docs clear on meaning of ‘brain death’,” Sabriya Rice, Jan. 14, 2014

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