Backing for family in brain death case
Doctor challenges medical consensus
It’s been more than three years since 13-year-old Jahi McMath was declared dead after something went terribly wrong following throat surgery at Children’s Hospital Oakland. Her family has never accepted the declaration and has kept her on life support ever since — and in a new twist, a prominent neurologist says recent videos of the girl show she is alive, with a partially functioning brain.
Jahi is connected to a ventilator in New Jersey, where her family moved her in 2014 after gaining custody of what Children’s Hospital officials and the Alameda County coroner insisted — and a judge agreed — was her corpse. The family, arguing that doctors’ diagnosis of brain death did not mean the girl was dead, sought unsuccessfully to force the hospital to continue caring for her, something officials there argued would be “grotesque.”
Now, Jahi is in an apartment in an undisclosed city while her mother and other relatives wage a legal fight to have her death certificate overturned — a preliminary step in what they intend to be a wrongfulinjury lawsuit, rather than a wrongful-death case, against the Oakland hospital.
The latest development in the case stems from 49 videos recorded by Jahi’s family from
March 2014 through April 2016. In the videos, according to court documents, Jahi is shown seemingly responding to simple commands, such as moving her right hand or kicking one manicured foot.
In a sworn declaration filed June 29 in Alameda County Superior Court, Dr. Alan Shewmon, a professor emeritus of pediatrics and neurology at UCLA and a well-known critic of the guidelines defining brain death, says the videos demonstrate not only that Jahi is alive but also that her condition is improving.
She is irrevocably and severely neurologically disabled, Shewmon says — the result of what happened after her throat surgery in December 2013 at what is now UCSF Benioff Children’s Hospital Oakland, when she went into cardiac arrest suffering massive bleeding and hemorrhaging. But he says she is no longer brain dead.
“Jahi’s subsequent course defied all predictions of what must happen to dead bodies maintained indefinitely on ventilators,” Shewmon said in his declaration. “Jahi McMath is a living, severely disabled young lady, who currently fulfills neither the standard diagnostic guidelines for brain death nor California’s statutory definition of death.”
Nailah Winkfield, Jahi’s mother, sued the hospital and state and Alameda County officials in December 2015, alleging medical malpractice. Her suit says the county coroner wrongly declared Jahi dead. If the courts reverse the death certificate, Winkfield could arrange to have Jahi receive medical care in California — something that can’t happen if she is legally dead.
Ultimately, if Jahi is reclassified as alive, the family could be entitled to millions of dollars in damages. Awards are capped in California at $250,000 for the wrongful death of a child, but there is no cap for wrongful-injury claims because a court can order medical costs to be paid indefinitely.
Jahi has a feeding tube and needs blankets to maintain her temperature, Shewmon said in his court declaration. But she has begun puberty and has menstruated, Shewmon said, based on his observations.
The family videos show several instances in which Jahi appears to respond to commands to move body parts such as her thumb and right hand, Shewmon said. In one clip, he said, Winkfield asks Jahi, “Which finger is the bad finger? Which finger would I move if I get mad at somebody? Which finger is the f-you finger?”
Seconds later, Jahi appears to slowly flex her middle finger, Shewmon said.
“At the time the videos were made, Jahi was in a responsive state, capable of understanding a verbal command and barely capable of executing a simple motor response,” Shewmon said.
He maintains that Jahi’s movements are different from most brain dead patients’ myoclonic spasms, which is when they twitch a leg or jerk their fingers. Those patients are also known to make the “Lazarus sign,” raising their arms or holding them crossed against the chest like a mummy. Because some neural pathways connect to the spinal column — not the brain — some spontaneous movement is possible.
Shewmon, a pediatric neurologist who was hired at UCLA in 1989 and retired from there in 2011, said Jahi’s responses show that she does not meet the criteria for brain death. He first entered Jahi’s case in 2014, when he wrote an affidavit after viewing two videos of the girl available online, and has argued in medical papers that California’s guidelines for determining brain death result in declarations of death for people who are in some senses alive.
In his June 29 declaration, Shewmon said he recently visited Jahi but didn’t witness the movements himself. He said he had not been paid by Jahi’s family for his time or his court declaration. He did not respond to a request for comment.
Jahi’s family has not allowed a third-party neurologist to conduct an examination since the girl was declared dead. Her attending physician and nurse also filed recent court affidavits supporting the family’s argument, but several medical experts interviewed by The Chronicle noted that neither is an authority in neurology.
Attorneys representing the Oakland hospital and its physicians argue that Jahi was properly declared dead. In a recent court filing, they called her family’s position “not supported by the law, logic or medicine.”
“The core issue is whether or not she is clinically brain dead and meets the standard definition of brain death,” said David Magnus, a Stanford University medical professor and director of Stanford’s Center for Biomedical Ethics. He is not involved in Jahi’s case and has not viewed the family’s videos.
“A neurologist went and found her to meet the clinical criteria for brain death,” Magnus said of Shewmon. “She exhibited none of the signs to prove she is not brain dead. Then he looked at videotapes the family made and, based on that, said she might not be brain dead. That is extremely suspect. It’s ridiculous to think you could do an examination based on videos that were sent to you.”
But if Jahi really did do the things Shewmon says he saw her do on the video, “that would be a huge challenge, medically and scientifically,” Magnus said. “It means what people believe they know about brain death based on decades of experience and evidence would turn out to be false.”
Under California law, a person is considered brain dead if he or she is in a coma, has no brain stem reflexes and cannot breathe without mechanical assistance. Under a 1983 state court ruling, hospitals are not required to provide care once a patient is diagnosed as brain dead.
The most recent wellknown end-of-life battle involves Charlie Gard, a British baby with a rare genetic condition that caused severe brain damage. The 11-month-old cannot breathe on his own, and his parents are trying to obtain medical care outside the United Kingdom.
The case involving Jahi is unlikely to go to court before next year. When it does, it could have far-reaching implications affecting public policy and organ transplantation, which hinges on the diagnosis of brain death.
“It’s an unprecedented case,” said Lawrence Nelson, a lawyer, bioethicist and associate professor of philosophy at Santa Clara University. “Either you are alive or you are not. If you are alive, but you are very badly brain damaged, you are a person and have moral and legal rights. If you are not alive, then you have none of those rights. Whether or not Jahi is alive or dead is huge and fundamental.”
There has never been a recorded instance of a braindead person regaining cognitive capabilities, said Thaddeus Pope, a professor and director of the Health Law Institute at the Mitchell Hamline School of Law in St. Paul, Minn. Pope has tracked Jahi’s case for years and posts legal documents in her family’s case on his website.
“Everybody, even the plaintiffs, agrees that Jahi was (brain) dead in December 2013,” Pope said. “What her family is saying is that she is not dead now. That is significant because there has never been a case ever in human history where somebody was correctly declared dead and had it rescinded later.”
New Jersey is the only state in the U.S. that defers to a family’s religious beliefs when determining whether to allow continued medical care. That’s why Jahi’s family brought her there to have a feeding tube inserted at an undisclosed Roman Catholic hospital.
Marjorie Shultz, a retired UC Berkeley professor of health law and medical ethics, said there should be more input from family members when discussing the fate of a brain dead patient.
“What it means to determine death is a scary thought for most people,” Shultz said. “We are going to have to move in that direction and revisit it, legally and collectively. We will continue to learn more about what is going on in the brain of people who are minimally conscious, or something in the twilight zone between unquestionably dead and unquestionably alive.”
“Jahi McMath is a living, severely disabled young lady, who currently fulfills neither the standard diagnostic guidelines for brain death nor California’s statutory definition of death.” Dr. Alan Shewmon, critic of guidelines defining brain death