Are Docs Giving Patients the Wrong Idea About Brain Death?

Arthur L. Caplan, PhD


August 21, 2018

Hi. I'm Art Caplan. I'm at the School of Medicine at NYU where I run the division of medical ethics. A 13-year-old boy, very recently in Alabama, was declared dead and his parents had signed organ donation permission papers. Suddenly, the boy began to show signs of life, signs of brain activity, and signs of recovery.

This is not a unique case. We've heard a number of similar situations involving children over the past few years. Doctors had announced, pronounced, or determined brain death, and it turned out that the child was coming back, recovering, or wasn't dead. Obviously, this is deeply disturbing from the legal, ethical, parental, and public-support-for-medicine points of view. What's happening? I think a number of things are taking place [regarding the issue of] brain death.

One problem is that when doctors discuss brain death with families, the doctors have to be very clear to use the term "dead" instead of "brain-dead." If someone wants to know how [to be] sure that a relative, loved one, or child has died, you don't start off with the concept of brain death, because they hear that differently.

People confuse coma with brain death. They think the doctor said, "He might be permanently unconscious," and they equate that with brain death because that may be something they have heard about or seen in the media. Everybody needs clarity. There's only one condition between life and death. Death is the end of life, and how we get that is by pronouncing either cardiac death or brain death.

If doctors believe someone to be dead, they should say that and then explain how they know. Don't confuse patients by beginning with terms like "brain death," because they'll mishear you. Some of the cases I'm aware of involve misperception of what the doctor was saying because family members were confused about someone being in a permanent coma, being comatose, or having other impaired neurologic states [versus being] brain-dead.

There are also problems in that we're getting better technology. For some types of injuries, it's possible that we're going to have to do more sensitive testing than we've done in the past, using equipment such as MRI scanning or functional MRI, which we didn't always have or that [is not available everywhere]. [More sensitive testing] becomes an issue when we start to see that there's more brain activity than we thought.

[Following an injury], the cause of the trauma is crucial to understanding brain death. If you are hit in the head, drown, or overdose, it's harder to say that the brain has stopped working completely than if it went without oxygen for 10 minutes because of a heart attack or if somebody suffered from a terrible wound, such as a gunshot wound, and the brain was destroyed. Depending on the kind of injury suffered, you can have more confidence regarding the thought that brain death might have occurred, but it requires some care and caution.

It also requires some care and caution depending on age. Clearly, children are posing tougher and more difficult situations than adults. I don't think I've seen many missed brain death diagnoses in people who are 60, but a lot of the cases that we're hearing about are [children aged] 13 or younger. There are situations where perhaps there's more recovery or more ability to come back from certain kinds of injuries than you might see in adults. Watchful waiting and caution [are important prior to declaring brain death].

I think parents need to understand that doctors use different tests and different techniques to determine death. Even in the area of cardiac death, it's not so black-and-white. Remember, the number of times you try to resuscitate is a judgment call depending on the patient and depending on the customs, tradition, and training of the team that's [responding]. I've seen people try to resuscitate someone two times before pronouncing death; I've seen them try 12 times before pronouncing death. [I've also seen more effort spent on] younger people than on very old people who have multiple diseases.

There's always some judgment around the pronouncement of death, but it's up to us not to confuse patients. [We need to be] clear and say, "We think your child has died." And when they ask, "How do you know?" then we go into the brain death discussion so they don't get mixed up. And perhaps we can give them more time and more watchful waiting when it's a younger person with a trauma or injury that offers more hope than other definitive injuries. I'm Art Caplan at the NYU School of Medicine. Thanks for watching.


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