Two tragic cases underscore our legal system’s difficulty in confronting that most basic of bioethical issues: When is death?
Thirteen-year-old Jahi McMath on Dec. 9, 2013, underwent a tonsillectomy at Oakland’s Children’s Hospital and Research Center to treat her sleep apnea. After extensive bleeding, she suffered cardiac arrest and, by Dec. 13, a neurologist not associated with the original surgery declared her brain dead. The hospital reported the death to the local coroner and doctors advised the parents of their intent to disconnect the ventilator. The parents immediately hired an attorney and sought and were granted an injunction from Alameda County Superior Court Judge Evelio Grillo.
The judge appointed a neurologist from Stanford Children’s Hospital to conduct an independent evaluation. This doctor also concluded Jahi was brain dead. Still, the judge refused to allow the hospital to remove the ventilator, giving the parents another week to consider filing an appeal.
About a week before this tragic incident, Erick Munoz found his wife Marlise, who was 14 weeks pregnant, unconscious and unresponsive on the floor, her face blue from lack of oxygen. She had apparently suffered a pulmonary embolism and was rushed to Fort Worth’s John Peter Smith Hospital. Within weeks, Marlise, like Jahi, was declared brain dead. Both Erick and his wife were paramedics and had agreed neither would want to be sustained by machines if they were suffering from a condition without hope of recovery.
When Erick asked that the ventilator be disconnected, the doctors refused, citing Texas state law §166.049, which provides: “A person may not withdraw or withhold life-sustaining treatment under this subchapter from a pregnant patient.” The law, and ones like it in effect in 23 states, makes no distinction between first or third trimester pregnancies and have no exception for a fetus who has suffered serious harm.
As is often the case in bioethics, the media, the courts and the general public framed the issues incorrectly, which can only yield conclusions either desperately wrong or irrelevant. In Jahi’s case, the issue was reported as who had the right to pull the plug: the doctors or the parents? With Marlise, the issue became whether an individual’s autonomous choice to withdraw extraordinary care should supersede the right to life of a child in utero, even if that child would not be viable for another six weeks.
In fact, the issue in both cases was the same: What legal or ethical obligation does a physician have to treat the dead? The answer is self-evident: none.
As New York University bioethicist Art Caplan told me, “Both these cases show how much work remains to be done in teaching Americans about brain death and life support.”
For centuries, death was defined as the cessation of blood circulation and breath. By the middle of the 20th century, however, this definition proved unreliable as physicians found ways to resuscitate patients whose lungs and hearts had stopped.
In 1968, an ad hoc committee at Harvard Medical School published a report establishing criteria for declaring patients dead when their brains no longer function. Then, in 1981, a presidential commission issued a report titled “Defining Death,” which became the basis for the Uniform Determination of Death Act, adopted in all 50 states. This act provides: “An individual who has sustained either irreversible cessation of circulatory and respiratory functions, or irreversible cessation of all functions of the entire brain, including the brain stem, is dead.”
Thus, even if medical technology keeps certain bodily organs functioning, a person falling under the act’s second definition is no longer alive. Accordingly, no court or legislature should require physicians to treat a dead person, even when families or loved ones insist otherwise. As Caplan bluntly puts it: “Even the Texas Legislature cannot defeat death.”
The medical community, of course, is partly at fault. The very phrase “brain death” might imply it is something other than death, or else why use the modifier? Just as confusing is the concept of “turning off life support” when the patient is already dead. Such linguistic imprecision might offer hope where there is none and give room for lawyers and their experts to debate the undebatable.
In Jahi’s case, her parents wanted the court to consider the opinion of Dr. Paul Byrne, a neonatologist and pediatrician who writes for the conservative Christian website RenewAmerica.com. Byrne titled his Dec. 24 column “Jahi is not really dead” and had previously espoused the belief that “so-called ‘brain death’ or ‘cardiac/circulatory death’ are terms concocted by transplant physicians and their allies who wanted to enlarge the donor pool by including patients who are really not dead in the traditional sense of the word.”
Such a view has no medical, ethical or legal basis. Dr. Kevin Doyle, a cardiologist in Baltimore, told me regarding the Oakland case, “Any death is tragic, particularly that of a child. But a person who is brain dead is dead and a physician has no duty to continue providing medical care in that instance.”
The case of Marlise Munoz is even more disturbing. Not only is a hospital continuing to supply “life support” for a patient whose life is over, it is doing so contrary to the wishes of both the patient and her family because of a poorly conceived law of questionable constitutionality. Even worse, a woman who is dead is being kept preserved to incubate a fetus whose health is anything but certain. This is death with the cruelest indignity.•