Bioethics

Brain-Dead Paternalism

Against forced plug-pulling and cadaveric incubation.

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Brain Death
Nature

In California this past December, due to a rare complication from a tonsillectomy performed to relieve her sleep apnea, 13-year-old Jahi McMath experienced massive bleeding. She was placed on a ventilator, and her physicians declared her brain-dead three days later. In Texas in November, 33-year-old Marlise Munoz, collapsed onto her kitchen floor. Her husband found her about an hour later, and she too is now brain-dead and on a ventilator. In both cases, state officials want to override the wishes of the next of kin with regard to how the patients should be treated.

In the case of McMath, a judge ordered that the ventilator that is keeping her lungs breathing and her heart beating be turned off. Conversely, Munoz's physicians are maintaining her on life support even though her next of kin have told them that Munoz, a trained paramedic, made it clear that she would not want life support in this kind of situation. She was pregnant when she collapsed, and the doctors claim that their hands are tied by a Texas law that requires them to keep her body functioning as a cadaveric incubator.

Every year, some 15,000 Americans—about 1 percent of those who die—are pronounced brain-dead. Brain death is not a coma or a vegetative state in which patients' brains continue to show some level of activity. It is the irreversible loss of all functions of the brain, including the stem. (The brain stem connects the spinal cord to the front parts of the brain and, among other functions, regulates breathing.) Physicians use various tests to diagnose brain death, including touching a Q-tip to the patient's cornea, squirting cold water into her ears, and removing ventilation to see if there is a spontaneous effort to breathe as carbon dioxide concentration builds in the bloodstream. There are no reported cases of a patient recovering brain function after failing to respond to these tests.

Modern biomedical wizardry makes it possible to keep the organs in the bodies of the brain-dead functioning, a capability that benefits the thousands of patients who receive transplants from those bodies. In most cases of brain death, the next of kin are notified that ventilation will soon be stopped and given an opportunity to consent to organ donation. Most of them accept that their loved ones have really come to the end of their lives.

McMath's mother is not one of them. She has removed her daughter from the hospital to an undisclosed location where ventilation, pharmacologic treatments, and nutrition are being supplied. The family has reportedly received donations amounting so far to $50,000 to help pay for the expenses of maintaining McMath's body functions.

And Munoz? In 2010, BMC Medicine published a systematic review of cases involving brain-dead pregnant women. The authors found 30 cases in the literature between 1982 and 2010. Twelve of the fetuses were viable; on average, those were at 22 weeks of gestation when their mothers were declared brain-dead and were born via caesarean section at 29.5 weeks of gestation. In the longest reported case on record, a pregnant woman declared brain-dead at 15 weeks of gestation gave birth to an infant at 32 weeks. Munoz was 14 weeks pregnant when her brain died. The BMC Medicine review found no cases in which fetuses born to brain-dead women at 14 weeks of gestation or earlier survived at birth.

Earlier this week, Erick Munoz filed a lawsuit asking a state court to order the Fort Worth hospital where his wife is located to cease life support, as she would have wished. He argues, among other things, that the hospital has misinterpreted the Texas law that forbids withdrawing or withholding life-sustaining treatment from a "pregnant patient." Although the physicians who are treating Marlise have told her husband and her parents that she is brain-dead, they have oddly not made that determination public. The lawsuit will force the doctors to either acknowledge her death or show evidence to the contrary.

Erick's legal brief declares that "as Marlise is deceased, she cannot possibly be a 'pregnant patient'" and cannot be subject to any "life sustaining" treatment, since the law defines a life-sustaining treatment as that which "based on reasonable medical judgment, sustains the life of the patient and without which the patient will die." Under Texas law, he argues, Marlise is already dead, so there can be no life-sustaining treatment in her case. Furthermore, the law explicitly applies only to pregnant patients, not to the fetuses that they carry. Erick also argues that the hospital is violating his wife's constitutionally protected right to refuse unwanted medical treatment or procedures. It should also be noted that Marlise had the legal right to abort her fetus before her collapse and subsequent brain death.

The University of Southern Maine philosopher Julien Murphy has cogently argued that sustaining a brain-dead pregnant woman violates two basic assumptions of pregnancy: that "a woman must be alive to be pregnant" and that "the mother in pregnancy must be person (emphasis his)." He adds, "Any mandatory [post-mortem ventilation] policy can be seen as violating women's reproductive freedoms and brain-dead patients' right to privacy." I'd add that, in what must be a very rare circumstance, it seems reasonable and ethical to continue life support of a pregnant brain-dead woman if she had expressed a prior desire to complete her pregnancy.

These two cases are unusual. Jahi McMath's mother has not accepted the reality of her daughter's death and has received help from others who have agreed to maintain and pay for her girl's body to remain on ventilation. Meanwhile, the body of Marlise Munoz is being kept on life support despite the opposition of her next of kin—and this is happening at a public hospital, so the taxpayers of Fort Worth are likely paying for the treatment. In both cases, the next of kin who believe that they are looking out for the best interests of their loved ones may be making a mistake. It should, however, be their mistake to make, without the intrusion of the government or the interference of paternalistic physicians.