Doctors: Jahi improved after being declared brain-dead

Findings suggest the medical understanding of consciousness and death are a gray area

“The law tends to favor bright line distinctions — yes or no, black or white, no in-between. ... Biology tends to involve a continuous spectrum.” — Dr. Robert Truog, director of the Harvard Center for Bioethics

Coming just days after the announcement of her death, a newly released Harvard Medical School summary says that Jahi McMath’s brain showed subtle signs of improvement over the fiveyear span following the original declaration that she was brain-dead — suggesting a legal “resurrection” from death to life and challenging our widely held understanding of what it means to be officially dead.

California declared Jahi dead in 2015, but the Oakland teen continued to grow, developed breasts, had menstrual cycles, digested food, excreted waste, fought off infections, healed wounds and seemed to respond to basic commands, according to medical testimony provided at a conference about the case.

Furthermore, her badly damaged brain had regions that were still intact — and there are clinical signs that she incrementally improved over time, seemingly crossing the line between “brain dead” into life in a “minimally conscious state,” though there was never any hope she would recover further, doctors said.

Jahi’s long, sorrowful saga — which began when an oral surgery went awry at Children’s Hospital Oakland — ended last week with news of her biological death at age 18, caused by internal bleeding and kidney issues. She now has two death certificates — one issued by California on Dec. 12, 2013, and one issued by New Jersey on June 22.

Her parents, never believing there was no hope, had

taken her across the country to the one state that allows a declaration of brain death to be contested on religious grounds, where she remained connected to breathing machines until last week.

The widely publicized and hotly debated fight over her fate illuminates a littleknown fact: “Brain death” is an important legal term, but the underlying biology may be far less decisive.

Its impact could reverberate through mainstream medicine for years to come, because science is advancing much faster than the courts or legislature, said doctors and bioethicists.

“The law tends to favor bright line distinctions — yes or no, black or white, no in-between,” said Dr. Robert Truog, director of the Harvard Center for Bioethics, who organized the conference. Held in April, its proceedings were released immediately after Jahi’s death.

By improving, Jahi crossed that bright line. Clinically, that’s not all that surprising, said doctors. That’s because, unlike law, “biology tends to involve a continuous spectrum. Brain injury also occurs on a spectrum,” and subtle changes can be detected

by ever-improving diagnostic tools, he said.

“By having some degree of improvement in her functioning, legally she’s gone from being in the ‘dead’ portion to being in the ‘alive’ portion,” Truog said. “That’s an important thing for us to grapple with.”

“Brain death” does not necessarily signify biological death, said Truog, but is merely the extreme end of the spectrum of neurological injury.

But the phrase serves an important role in society, he added. Even if patients are not biologically dead, their profound neurological impairment means that, for legal purposes, they can be treated as if they are dead. It’s essential for knowing when wills may be executed and when organs can be donated, said Truog.

There are other examples of biological transitions that are legally definitive. For example, on the moment a person becomes 18, he or she goes from being a child to an adult, with completely new legal status. People whose vision slips below 20/200 are “legally blind” even though they can still see.

But it can be very confusing for grieving families. Jahi suffered major brain injury at UCSF Benioff Children’s Hospital Oakland after going into cardiac arrest following complications

from complex nose and throat surgery. Her parents then moved her to New Jersey for care.

When Jahi’s family rejected California’s determination of death, experts such as bioethicist Laurence McCullough of Baylor College of Medicine in Houston called their logic “disordered, from a medical point of view. … There is a word for this: crazy.”

But now some doctors think differently. “We would say that Jahi’s parents were far from crazy in believing their daughter to still be biologically alive,” according to Truog. He published a major article about the controversy, called “Defining Death,” in the May 8 issue of the Journal of the American Medical Association.

The current definition, established in 1981 by the U.S. President’s Commission, is based on the stance that biological and legal “brain death” are the same — presuming that the functioning of the brain is necessary for the functioning of the organism as a whole.

But over the past several decades, doctors have learned that this is not scientifically correct, said Truog. There is incontrovertible evidence that individuals who meet diagnostic criteria for brain death can continue to live and maintain their bodies indefinitely with the aid of

mechanical ventilation.

Jahi met the three legal criteria for brain death: coma, absence of brainstem reflexes, and apnea.

But, using additional tests, she was still alive, asserted Dr. D. Alan Shewmon, professor emeritus of pediatrics and neurology at UCLA, who reviewed Magnetic Resonance Imaging and other tests, as well as 49 videos of the teenager moving specific fingers and toes at command.

She was intermittently responsive to stimuli, such as the voices of family members, said Shewmon, who publicly explained the MRI scans and footage at Harvard for the first time. While her movements weren’t consistent, they were reproducible and sustained enough to be differentiated from reflexive behavior.

This was not merely the result of Jahi being sustained by machines, he said. In other sustained “brain dead” patients, the entire contents of their skull have been replaced by a chaotic jumble of tissues, fluids and calcifications, eventually liquefying.

“If Jahi were brain dead, we would expect her MRI at nine months to show a similar pattern with near total destruction,” Shewmon said. This conclusion also was reached by Dr. Charles J. Prestigiacomo, director of Cerebrovascular

and Endovascular Neurosurgery at Rutgers University Hospital in Newark, New Jersey.

To be sure, her brain was massively damaged, according to advanced brain scans presented at the Harvard conference, performed at Rutgers University Hospital. She suffered destruction to the insulation, called myelin, around nerves. Also damaged was her “cortical ribbon,” a slender strip that comprises the outermost portion of the brain. There was degeneration in her deep white matter, as well as her corpus callosum, which joins the brain’s two hemispheres. There also were signs that the contents of her brain had shifted, perhaps catastrophically, due to high intracranial pressure.

But there was surprisingly little damage to other parts. There was no atrophy of the cortex. Her upper brainstem was largely intact. So was an area called the thalamus, according to slides shown by Shewmon.

“Since these are the structures that mediate arousal and alertness,” said Shewmon, “it is tempting to speculate that its relative preservation, in contrast to the lower brainstem destruction, could account for Jahi’s intermittent awareness — despite her severe motor disability and absent brainstem reflexes.”

Improved diagnostic tools are blurring the bright line drawn by law — making it possible to detect “life” through determination of blood circulation, electrical function and other signs that weren’t detectable before, the experts said.

This raises issues about the accuracy of tests for determining brain death and the pressure doctors could feel to aggressively intervene, said Arthur Caplan, founding head of the Division of Medical Ethics at NYU School of Medicine.

“Do we have to be beef up the tests?” asked Caplan. “Is it affordable to do that? For everybody who is declared dead, do we put their head in an fMRI machine?”

Meanwhile, advances in care are also improving outcomes, said Harvard’s Truog. There are examples of patients who were thought to be in a permanent vegetative state who improved to the level of a minimally conscious state, or even beyond.

If there was evidence that Jahi improved, “this could be the first case suggesting that the diagnosis of brain death by established criteria may not be irreversible,” said Truog. “And this could really be kind of a bombshell.”