A Brain Dead Little Girl Raises Some Big Questions

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By Tom Tomlinson, Ph.D.

Starting a couple of weeks before Christmas, tragic news about Jahi McMath hit the media, and has scarcely abated since. Jahi is a 13-year-old girl who suffered a cardiac arrest and massive brain bleed following a routine tonsillectomy. She was declared whole brain dead on December 13 at Children’s Hospital and Research Center in Oakland, California. Her parents have been fighting ever since to prevent withdrawal of the ventilator and other interventions that have been sustaining her body, and succeeded in getting a series of court injunctions to prevent Children’s Hospital from removing “life support.”

As of this writing (January 22), Jahi is still on the machines and has been transferred to an undisclosed facility for continued care, despite the indisputable fact that a person who has suffered whole brain death is legally dead in all 50 states.

Predictably, bioethicists have been interviewed to offer their opinions about the case, and those opinions have been uncompromising—Jahi is not just brain dead, she is plain dead. Since there is no obligation to provide “life” support or any other medical treatment to a dead person, Children’s Hospital would have been fully within its rights to withdraw that treatment once Jahi was declared dead.

Laurence McCullough, bioethicist at Baylor College of Medicine, is quoted as saying that “There are no ethical issues in the care of someone who is brain-dead, because the patient is now a corpse . . . orders should have been immediately written to discontinue all life support. . . . The family should have been allowed to spend some time with the body if they wished. And then her body should have been sent to the morgue. That is straightforward. There is no ethical debate about that.”

Echoing similar comments imputed to Arthur Caplan (NYU Langone Medical Center) in the same article, McCullough is reputed to have said that “‘brain death’ is no different than any other sort of death: A brain-dead person is no longer alive. The term simply describes how the death was determined.”

McCullough and Caplan are right about the law. There is no difference between a person who is declared dead because his brain will no longer work, and a person declared dead because his heart and lungs have irreversibly stopped working. They are equally “dead,” legally speaking.

But in other respects brain death is different than other sorts of death. To begin with, brain-dead is not stone cold dead. When the whole brain has died, including the brain stem, the most important vital function that’s lost is the signal to breathe. But a ventilator can fill the lungs with air, providing oxygen to the rest of the body, even if the patient can no longer breathe on her own. Since the heart can operate relatively independently of the brain, a brain-dead person on a ventilator can have a heartbeat, might be warm and soft to the touch, and might have normal color. Brain-dead patients on ventilators don’t look like corpses. And, depending on a variety of factors, a brain-dead body might be successfully maintained for months—even enough time to bring a fetus to term—a factor in the case of another brain dead patient in Texas.

Given what they are probably seeing and feeling, then, it is completely understandable why Jahi’s parents believe their eyes rather than the doctors. From their perspective, the ventilator is keeping their daughter alive, not preserving a corpse. It wouldn’t be surprising if their discussions with the medical staff encouraged that idea. The very term “life support” creates a cognitive dissonance when applied to the brain dead patient who is allegedly dead. Encouraging the parents to agree to withdrawal of the ventilator because “The machine is the only thing keeping her alive” sends a similar mixed message. Even something like “Her condition is hopeless; there is nothing more we can do” suggests the ventilator is a kind of treatment that’s not going to prevent the patient’s death. The question whether it can prevent something presumes it hasn’t yet occurred.

In a study I did many years ago, experienced ICU physicians and nurses, who all understood the concept of brain death, and believed that brain-dead patients were legally dead, commonly used these sorts of expressions (Tomlinson, 1990). I suspect they are still commonly used, because a conversation about withdrawing hopeless treatment is much simpler and more familiar to all involved than an explanation of why a patient with a beating heart is dead.

So how can a person with a beating heart be dead? The answer is anything but straightforward.

Should we say—as many have about Jahi—that sooner or later her body will begin to deteriorate and her heart will stop? This is true enough, but all it really proves is that brain death is invariably terminal on anyone’s understanding of “dead.”

Should we say that if it weren’t for the ventilator, Jahi’s breathing and heartbeat would have stopped once her brain died? Yes, this is true. With the death of the brain, spontaneous respiration stops, and the heart stops very soon thereafter. The brain orchestrates the vital functions, and so the death of the brain spells the permanent loss of the vital functions. But this is not quite accurate. The death of the brain spells the end of the spontaneous vital functions. Why can’t we say that the ventilator is substituting for the function previously performed by the brain stem, and so keeping the patient alive by artificial means?

Enough already! Shouldn’t we just say that death is not really about the loss of the vital biological functions, or about the brain’s role in supporting them. It’s about the death of the person. The death of Jahi’s brain is the absolutely 100% accurate sign that she—the conscious person—will never return. Whether her heart keeps beating doesn’t matter. She’s gone.

This is a very attractive idea. After all, what does death mean to me, from the personal point of view, if not the end of my human experience? Whatever may continue after that doesn’t affect me in the least. If we accept this view, however, we will have to struggle with what to think about those persons whose brains still support respiration and heartbeats, but not conscious awareness. Was Terri Schiavo dead for the 14 years she was in a persistent vegetative state, with no awareness of herself or her environment, according to the neurologists who examined her? Just as dead as Jahi McMath is now?

“Dead” was a pretty simple notion once upon a time. Jahi McMath should remind us—bioethicists included—that it’s a lot more complicated now.

References:

Bloomekatz A. ‘Inevitable’: As Jahi McMath deteriorates, brain-death case nears end. Los Angeles Times. January 9, 2014. Retrieved from http://www.latimes.com/local/lanow/la-me-ln-jahi-mcmath-body-deteriorating-20140108,0,4831276.story#axzz2q1QnqUkl

Editorial: Let Marlise Munoz die. Dallas News. January 9, 2014. Retrieved from http://www.dallasnews.com/opinion/editorials/20140109-editorial-let-marlise-munoz-die.ece

Szabo L. Ethicists criticize treatment of teen, Texas patient. USA Today. January 10, 2014. Retrieved from http://www.usatoday.com/story/news/nation/2014/01/09/ethicists-criticize-treatment-brain-dead-patients/4394173/

Tomlinson T. Misunderstanding death on a respirator. Bioethics. 1990;4(3):253-264. Retrieved from http://onlinelibrary.wiley.com.proxy1.cl.msu.edu/doi/10.1111/j.1467-8519.1990.tb00088.x/abstract

Truog R.D. Is It Time to Abandon Brain Death? Hastings Center Report. 1997;27(1):29-37. Retrieved from http://www.jstor.org/stable/3528024

tomlinsonTom Tomlinson, Ph.D., is the Director of the Center for Ethics and Humanities in the Life Sciences and a Professor in the Department of Philosophy at Michigan State University.

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