FREMONT, Calif. — Several doctors, many pre-eminent ethicists and a California judge all pronounced Jahi McMath “brain-dead” almost two years ago, and a county coroner issued her death certificate. But a document filed this month in the Superior Court of California claims a world-renowned pediatric neurologist has spent hours with the 15-year-old girl and determined that she “no longer fulfills standard brain-death criteria” because she responds to verbal commands.
If proven true, the case will be the first in which a person correctly declared “brain-dead” according to accepted diagnostic criteria was then shown to have improved to no longer meet the conditions of death — and is alive. As such, McMath’s case is potentially explosive in the medical, legal and ethical end-of-life arena, where a host of diagnoses, including “brain-death,” are increasingly untenable.
McMath first drew international attention after a routine tonsillectomy at Children’s Hospital Oakland in December 2013 turned into a parent’s worst nightmare. The amended malpractice complaint filed by attorney Bruce Brusovich against Dr. Frederick Rosen, the hospital and others on behalf of McMath’s mother, Nailah Winkfield, and Jahi, alleges that the then-13-year-old girl bled profusely for more than seven hours, blocking regular blood flow to her brain, while anxious requests from her mother and grandmother for a doctor to see her were refused.
The teenager eventually suffered a heart attack, and doctors declared her “brain-dead.” They withdrew her feeding tube, and, according to the complaint, the hospital administration began “pressuring the family to agree to donate Jahi’s organs and disconnect her from life support.” It claims that David Duran, chief of pediatrics at the hospital, slammed his fist on the table and said, “What is it you don’t understand? She is dead, dead, dead, dead!”
The girl’s family went to court to prevent the hospital from removing Jahi’s ventilator and had her transferred, with private funds, to an unidentified Catholic hospital in New Jersey and then into a home with her family, where she receives around-the-clock care. The death certificate in California and an agreement to bring McMath to the coroner for an autopsy keep them from returning home, according to a report in the Santa Cruz Sentinel.
A motion filed by attorneys for the defendant, Dr. Rosen, claims there is no legal mechanism or precedent that permits reversing her death certificate. “The court should not entertain plaintiffs’ claim that Jahi has risen from the dead.”
At the time of the tragedy, the family was criticized publicly for failing to accept Jahi’s death. New York University ethicist Arthur Caplan called the efforts to treat Jahi “ghoulish” and said doctors and facilities treating her should be “charged with desecrating a corpse.”
“She’s very frail,” Caplan told CNN. “Her body is falling apart. At least, this can’t go on much longer.”
But 10 months after McMath was declared legally dead, the family’s San Francisco lawyer, Christopher Dolan, released videos of Jahi wiggling her toes and responding to her mother’s requests to move her foot and hands, with MRI results suggesting there was significant blood flow to her brain.
A Facebook update, posted last month, shows Jahi a few days before her 15th birthday. “Thank you for your continued prayers. The Power of Prayer. The Grace of God,” it says under a picture of the girl wearing heart-shaped eye covers, lying beneath a wall plastered in cards and her name in pink glitter. Her ventilator tube, inserted in her throat, is not visible. “Our little sleeping beauty is doing great and progressing. She is moving more on her mother’s command. As you can see, she is still alive and just as beautiful as ever. Flawless skin!”
Jahi’s mother’s testimony is now supported by an internationally recognized specialist in neurology. UCLA pediatric neurologist Dr. Alan Shewmon confirmed to the Register it is his expert opinion, paraphrased in the malpractice complaint filed this month in California, stating, “I still stand by my amended court statement.”
The paper states: “In the opinion of the pediatric neurologist who has examined Jahi, having spent hours with her and reviewed numerous videotapes of her, that time has proven that Jahi has not followed the trajectory of imminent total body deterioration and collapse that was predicted back in December of 2013, based on the diagnosis of brain death.”
“Her brain is alive in the neuropathological sense, and it is not necrotic. At this time, Jahi does not fulfil California’s statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal command.”
The complaint also claims that Jahi began menstruating eight months following her diagnosis of brain death. “The female menstrual cycle involves hormonal interaction between the hypothalamus (part of the brain), the pituitary gland and the ovaries,” it states as the opinion of the examining physician. “Corpses do not menstruate. Neither do corpses undergo sexual maturation.”
Bombshell for Doctors
Comments on Hameline University law professor and ethicist Thaddeus Pope’s Medical Futility blog highlight the significance of Jahi’s case.
“Regardless of one’s views about brain death, if these developments are correct, then this is a bombshell,” commented Robert Truog, a pediatrician at Boston Children’s Hospital and Harvard Medical School. He is a leading proponent of doing away with the dead-donor rule to allow doctors to take organs from living people who are beneath an acceptable quality of life.
“Given the intensive scrutiny that this case received, I have to believe that she fulfilled all of the standard criteria for the diagnosis of brain death when she was initially diagnosed. In spite of all of the cases reported over the years in the media about patients who ‘recovered’ from brain death, I think we have always been able to say that there has never been a patient correctly diagnosed as being brain dead who has developed neurological functioning inconsistent with that diagnosis, and I think we have all found that reassuring. But this changes all that,” said Truog.
“Furthermore, unless her parents had pushed (to an unreasonable extent, in the minds of many) for continuation of life support, we would never have known that this potential existed,” added Truog. “Hence, it is not sufficient to say that this is a ‘one-off’ case that we can ignore, because we do not know how often this might occur if such support was more often provided.”
“It is obvious that, if the lawyer’s claims are true, Jahi is not now and never has been dead,” Robert Veatch, professor at the Kennedy Institute of Ethics at Georgetown University, told the Register. “This means the tests performed in California leading to the pronouncement of death must either be done erroneously or that the tests themselves, even if properly conducted, are in error.”
“It’s a big deal,” Pope told the Register, because the case could significantly undermine public trust in medical diagnoses — especially at a time when so many assumptions about brain conditions are being challenged. Researchers at the University of Western Ontario, Canada, have begun communicating with patients in so-called “vegetative states,” who were supposed for decades to be completely incapable of conscious thought, using functional MRI technology.
“Statistically, there are already increasing numbers of brain-death disputes, and that is largely a consequence of the Jahi McMath case,” he said. That, he added, will translate into fewer organ donations, where there is already a shortage.
“Organ donation is big business,” added Bobby Schindler, the brother of Terri Schiavo and president of the Terry Schiavo Life and Hope Network. “I don’t think you can ignore that dynamic.” The average cost of a heart transplant in the first year is $1 million, for example, and a 2015 market research report says blood and organs are a $24-billion-per-year industry.
But for Schindler and others who have objected to the brain-death diagnosis from the beginning, the reports are not a bombshell. “What we’re seeing now really just validates what Jahi’s family was saying from the beginning,” Schindler said.
St. John Paul II
The Church endorses Catholics in either decision to use or not use “extraordinary means,” including ventilators, to support loved ones; they are not morally obliged to do so and are to be supported if they choose so.
Regarding the complicated ethics of brain death, Catholics frequently refer to an address St. John Paul II delivered in 2000, in which he commented, “Here it can be said that the criterion adopted in more recent times for ascertaining the fact of death, namely the complete and irreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology.”
Register correspondent Celeste McGovern writes from Scotland.