The Girl Who Died Twice

On June 22, Jahi McMath’s mother announced that her dear daughter had died. Again. While the death of a child is always particularly tragic, few families have had to deal with it twice—with the same child.

Back in 2013, Jahi needed throat surgery that initially seems to have gone well, but in recovery, everything went wrong and Jahi suffered irrecoverable brain damage. She was eventually declared brain dead in December of 2013. Her family fought the diagnosis, first arguing that it wasn’t accurate and later rejecting the notion that being brain dead meant that Jahi was actually dead.

UCSF Benioff Children’s Hospital in Oakland insisted on following California’s legal recognition of brain death as “death,” and issued a death certificate. Under the order of a judge, they then released Jahi’s still-live body to her family, who transferred her to New Jersey, the only state that allows for religious objection to brain death constituting the death of an individual.

For the next almost five years, Jahi remained very biologically alive—maintained on a ventilator and through artificial feeding. During that time she continued to grow, fight infection, and even underwent menarche. A few weeks ago, Jahi needed intestinal surgery, from which she never recovered. New Jersey issued a death certificate on June 22, 2018.

* * *

How can we make sense of this?
Brain death is a technical diagnosis, indicating that almost all of a person’s brain has stopped functioning; they are irreversibly unconscious and have lost basic brain-mediated reflexes. The diagnosis also means that the respiratory center of the brain no longer function either—meaning that the person cannot breathe on her own. However, with ventilation and nutrition, if the original injury was limited to their head alone, most other bodily functions can continue. Legally speaking however, all U.S. jurisdictions recognize “brain death” as the death of the individual.

But because a brain dead patient doesn’t look, feel, or “act” like a corpse, there have been serious philosophical and ethical challenges to this diagnosis since it was introduced some 70 years ago.

By definition, death is final; it is something from which we cannot return. Part of the utility of diagnosing brain death is that it represents finality—it is a state from which a person cannot recover. Or so we thought.

While everybody seems to agree that Jahi was properly diagnosed back in December 2013, throughout the last four and a half years, Jahi’s family has indicated that Jahi has made some—albeit minor—recovery. They released videos of her seemingly responding to basic commands and moving in ways that may indicate a modicum of brain function. And even though this was far from anything like a full recovery, the family argued that if Jahi had been retested, she would no longer have qualified as brain dead.

This is a serious challenge to recognizing brain death as a definitive line between life and death. If true, it would prove that it’s possible for a person to cross from one side of that line to the other and rejoin what medicine uses as the diagnostic criteria for the living. It would mean that brain death is not necessarily a definitive final diagnosis and that we could never be sure that somebody diagnosed as brain dead might not become un-brain dead at some later point.

This matters. A lot.

In fact, the permanence of brain death has long been discussed and analyzed with various arguments offered for why ‘total brain failure’ (to borrow a term from the 2008 Council on Bioethics) should mean that person is dead. Some of the arguments are more convincing than others. And with improvements in technology and advances in neurology, James Bernat, one of the early advocates for brain death as death, argues that the recognition of brain death as death is “imperfect” and cannot address “all valid criticisms” but nonetheless “remains optimum public policy” as a compromise or approximation of death for a variety of functional and utilitarian reasons.

This fundamentally comes down to recognizing that the criteria we choose to determine death reflect some underlying value or understanding of what it means to be alive. As Robert Veatch, one of the authors of the original JAMA paper promoting acceptance of the brain death standard explains, “There is in principle no scientific basis for choosing one set of standards or underlying concepts over another.” Meaning, whatever physiological function we select that when irreversibly ceased constitutes the death of a person reflects some underlying value or understanding of why that particular function quintessentially makes the difference between life and death.

Practically, we need a working definition of death for a whole host of reasons and this is reflected in public policy and law. And so, when Jahi’s doctors rebuffed her mother’s refusal to accept that Jahi was dead, they were operating within their legal rights and duties.

But just because the law must stake a claim on death, does not mean that the law will always be correct; or that it contains the only possible truth. And if a stalemate develops in moments when the law conflicts with ethics or science—as happened in the case of Jahi—then some form of resolution mechanism should be developed. At no point should a family suffering from such a horrific tragedy and advocating for a rational system of values (even if it disagrees with the mainstream) ever feel that “No one was listening to us.”

Law must be functional and make hard decisions, but it also must admit humility in recognizing the diversity of alternate perspectives on values and ethics. Let’s dedicate ourselves to crafting a legacy for Jahi, by supporting efforts of law and bioethics to work together in creating and fostering an environment where multiple truths all have a seat at the table.

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