Sunday, May 17, 2020

Jahi McMath


In a petition to the Alameda County Superior Court, Dolan requested that a physician unaffiliated with the hospital examine Jahi. He wrote that the hospital had a conflict of interest, because if its doctors were found guilty of malpractice they could “drastically reduce their liability by terminating Jahi’s life.” In cases of wrongful death, California places a cap of two hundred and fifty thousand dollars on damages for pain and suffering. But there is no limit on the amount that can be recovered when a patient is still alive. In a separate motion, Dolan argued that the hospital was infringing on Nailah’s right to express her religion. He said that, as a Christian, she believed that her daughter’s soul inhabited her body as long as her heart beat…

Sandra said she sometimes wonders, “If the hospital had been more compassionate, would we have fought so much?”

Nailah asked Children’s Hospital to perform a tracheotomy, a surgery that enables ventilator air to be pumped directly into the windpipe—a safer way for Jahi to breathe when transported to a new hospital. The hospital’s medical-ethics committee unanimously concluded that the intervention was inappropriate. “No conceivable goal of medicine—preserving life, curing disease, restoring function, alleviating suffering—can be achieved by continuing to ventilate and artificially support a deceased patient,” they wrote. They said that the doctors and nurses caring for Jahi were experiencing “tremendous moral distress,” and that accommodating the family’s requests would raise “significant concerns of justice and fairness.”…

It wasn’t until they landed that she learned they were in New Jersey, one of only two states—New York is the other—where families can reject the concept of brain death if it violates their religious beliefs. The laws in both states were written to accommodate Orthodox Jews, some of whom believe, citing the Talmud, that the presence of breath signifies life…

Bioethicists also disparaged the family’s decision. In an op-ed in Newsday, Arthur Caplan, the founding director of N.Y.U.’s Division of Medical Ethics and perhaps the best-known bioethicist in the country, wrote, “Keeping her on a ventilator amounts to desecration of a body.” He told CNN, “There isn’t any likelihood that she’s gonna survive very long.” In an interview with USA Today, he said, “You can’t really feed a corpse” and “She is going to start to decompose.” Laurence McCullough, a professor of medical ethics at Cornell, criticized any hospital that would admit Jahi. “What could they be thinking?” he said to USA Today. “There is a word for this: crazy.”..

Legal ambiguities remained—people considered alive in one region of the country could be declared dead in another—and, in 1981, the President’s Commission for the Study of Ethical Problems proposed a uniform definition and theory of death. Its report, which was endorsed by the American Medical Association, stated that death is the moment when the body stops operating as an “integrated whole.” Even if life continues in individual organs and cells, the person is no longer alive, because the functioning organs are merely a collection of artificially maintained subsystems that will inevitably disintegrate. “The heart usually stops beating within two to ten days,” the report said…
Weisbard had previously served as the assistant legal director for the President’s Commission on death and, like Wikler, he felt uneasy about the result. He said, “I think that the people who have done the deep and conceptual thinking about brain death are people with high I.Q.s, who tremendously value their cognitive abilities—people who believe that the ability to think, to plan, and to act in the world are what make for meaningful lives. But there is a different tradition that looks much more to the body.” The notion of brain death has been rejected by some Native Americans, Muslims, and evangelical Protestants, in addition to Orthodox Jews…

Weisbard, a religious Jew, said that he didn’t think “minority communities should be forced into a definition of death that violates their belief structures and practices and their primary senses.”…
At St. Peter’s Hospital, a music therapist visited the intensive-care unit every few days. She stood next to Jahi’s bed and played lullabies and soothing melodies on a harp. Nailah observed that Jahi’s heart rate, which tended to be high, would lower when the harpist played. She wondered if her daughter found the songs calming…

“Move your hand,” Nailah says. Two seconds later, Jahi cocks her right wrist. “Very good!” Nailah says. “Can you move your hand again? Move your hand so we can see it. Move it hard.” Nine seconds later, Jahi flexes her forearm, turns her wrist, drops the cloth, and lifts her fingers. Her face is expressionless and still.

In another video, Nailah says, “Kick your foot.” Jahi’s purple blanket has been folded back, revealing her bare feet and ankles. After fifteen seconds, she wiggles her toes. “Try your hardest,” Nailah says. “I see you moved your toes, but you have to kick your foot.” Twenty-two seconds later, Jahi flicks her right foot upward. “Oh, I’m so proud of you,” Nailah says, leaning over the bed and kissing her cheek…

In late August, 2014, Jahi was released from St. Peter’s. Her discharge diagnosis was brain death. She moved into a two-bedroom apartment that Nailah and Marvin had rented in a colorless condominium complex near New Brunswick. They slept on an air mattress on the floor, and Jordyn, who had just moved to New Jersey, to begin first grade, slept on the couch. Jahi had the brightest room, with a large window overlooking the parking lot. Nurses, paid for by Medicaid, provided twenty-four-hour care, in eight-hour shifts. Every four hours, Nailah helped them turn her daughter’s body. One of Jahi’s most loyal nurses taped a note to the wall of her bedroom: “During your shift, interact with her,” she had written. “She does hear you! Speak clearly, softly, slowly.” She added, “No one knows if she understands, but just your comforting voice or touch should help.”..

A month after Jahi’s discharge, the International Brain Research Foundation, a neuroscience think tank that supports novel research, helped pay for Jahi to have MRI scans at Rutgers New Jersey Medical School. Calixto Machado, the president of the Cuban Society of Clinical Neurophysiology, flew to New Jersey to analyze the scans. Machado has published more than two hundred papers on disorders of consciousness and runs a symposium every four years that attracts the world’s leading scholars of brain death. He said, “Everybody was talking about Jahi—Jahi this, Jahi that—but nobody knew the neurological picture.” The fact that Jahi had begun menstruating—a process mediated by the hypothalamus, near the front of the brain—suggested to him that not all neurological functions had ceased…

Dolan sat beside Machado in the hospital as he looked at two computer screens showing images of Jahi’s head and the top of her spine. In the rare cases in which brain-dead patients are sustained by a ventilator, neurologists have reported a phenomenon called “respirator brain”: the brain liquefies. Machado said that if Jahi’s original diagnosis was correct, and she’d had no cerebral blood flow for nine months, he expected that she’d have little tissue structure in her cranial cavity, just fluid and disorganized membranes.

On the scans, Machado observed that Jahi’s brain stem was nearly destroyed. The nerve fibres that connect the brain’s right and left hemispheres were barely recognizable. But large areas of her cerebrum, which mediates consciousness, language, and voluntary movements, were structurally intact. Dolan shouted, “She’s got a brain!”

Machado also performed a test that measures the interplay between the sympathetic and parasympathetic nervous systems, a relationship that regulates states of arousal and rest. He used three experimental conditions, one of which he called “Mother talks to the patient.” Nailah stood next to her daughter without touching her. “Hey, Jahi, I’m here,” she told her. “I love you. Everyone is so proud of you.” Machado noted that Jahi’s heart rate changed in response to her mother’s voice. “This cannot be found in a brain-dead patient,” he wrote.

Three days after the scans, Dolan submitted a report by Machado to the Alameda County Coroner’s Bureau and asked it to rescind Jahi’s death certificate, so that Nailah could return to California and have Jahi treated there. The coroner and the county’s public-health department rejected the request. “Any opportunity to overturn the Court’s holding that Jahi McMath is brain dead has long expired,” their lawyers wrote.

D.Alan Shewmon, who had just retired as the chief of the neurology department at Olive View-U.C.L.A. Medical Center, read Machado’s report and wondered if Jahi had a condition, first proposed by the Brazilian neurologist C. G. Coimbra, called ischemic penumbra. Coimbra hypothesized that this brain state could lead to a misdiagnosis of brain death in patients whose cerebral blood flow was diminished enough that it couldn’t be detected by the standard tests. If blood was still flowing to parts of the brain, however slowly, then, in theory, some degree of recovery could be possible.

Shewmon has given a diagnosis of brain death to roughly two hundred people. He is measured, formal, and precise. When I asked him what he thought of the media coverage stating that Jahi would die imminently, he paused and said, “I sit back and let it play out.” He laughed, harder than I would have expected, and said nothing more.

Two months after Machado’s tests, Shewmon flew to New Jersey and visited Jahi at her apartment. He pulled a desk chair next to her bed and, with a notepad in his hand, watched her for six hours. Jahi did not respond to his instructions to move her limbs, a fact that Shewmon did not find particularly revealing. He had analyzed the videos that Nailah had recorded, and they suggested to him that Jahi was in a minimally conscious state, a condition in which patients are partly or intermittently aware of themselves and their environment. He wrote that her condition “creates a particular challenge to either disprove or verify, because the likelihood of Jahi being in a ‘responsive’ state during a random examination is small.”

After Shewmon left, Nailah took more videos. She followed Shewmon’s instructions not to touch her daughter during the filming and to begin the video outside Jahi’s room. Shewmon eventually analyzed forty-nine videos containing a hundred and ninety-three commands and six hundred and sixty-eight movements. He wrote that the movements occur “sooner after command than would be expected on the basis of random occurrence,” and that “there is a very strong correspondence between the body part requested and the next body part that moves. This cannot be reasonably explained by chance.” He noted that the movements “bear no resemblance to any kind of reflex,” and that, in one video, Jahi seemed to display a complex level of linguistic comprehension. “Which finger is the eff-you finger?” Nailah asked her. “When you get mad at somebody, which finger you supposed to move?” Two seconds later, Jahi flexed her left middle finger. Then she bent her pinkie. “Not that one,” Nailah said. Four seconds later, Jahi moved her middle finger again.

James Bernat, a neurologist at Dartmouth who helped develop the theory of brain death that formed the basis of the 1981 President’s Commission report, told me that Shewmon showed him some of the videos. “My thoughts about this are not fully formed,” he said, adding, “I’m always skeptical of videotapes, because of the videos of Terri Schiavo.” Her family had released video clips that they presented as proof of consciousness, but the videos had been edited, giving the impression that she was tracking people with her eyes, even though she was blind.* Bernat said, “I have a huge amount of respect for Alan, and if he says something, I am going to pay attention to it.” He called Shewmon “the most intellectually honest person I have ever met.”

When Shewmon was a college sophomore, at Harvard, he listened to Chopin’s Trois Nouvelles √Čtudes No. 2, in his dorm room, and the music lifted him into such a state of ecstasy that he had an epiphany: he no longer thought it possible that all conscious experience, particularly one’s perception of beauty, could be a “mere electrophysiological epiphenomenon,” he said. The music seemed to transcend “the spatial limitations of matter.” An atheist, he converted to Catholicism and studied Aristotelian-Thomistic philosophy. He went to medical school, in 1971, and then specialized in neurology, because he wanted to understand the relationship between the mind and the brain.

For the next fifteen years, he believed in and defended the notion of brain death, but in the early nineties he began to feel increasingly troubled by the concept. When he engaged in what he called “Socratic conversations” with colleagues, he saw that few doctors could confidently articulate why the destruction of one organ was synonymous with death. Usually, they’d end up saying that these patients were still living biological organisms but had lost the capacities that made them human. He thought the formulation seemed too similar to the idea of “mental death,” which the Nazis embraced after the publication, in 1920, of a widely read medical and legal text called “Permission to Destroy Life Unworthy of Living.”

“I think that from time to time he likes to remind us how talented he can be by writing something terrible.”

In 1992, Shewmon was asked to consult on the case of a fourteen-year-old boy who, after falling off the hood of a moving car, had been declared brain-dead. The boy’s family was religious and insisted that he remain on a ventilator. His physicians, certain that his heart would soon fail, acceded to his parents’ request. He survived for sixty-three days and began puberty. “This case flew in the face of everything I had been taught regarding the universality and imminence of somatic demise in brain death,” Shewmon later wrote. “It forced me to rethink the whole thing.”…

In 1997, in a paper called “Recovery from ‘Brain Death’: A Neurologist’s Apologia,” Shewmon disavowed his earlier views. He acknowledged that “dissenters from the ‘brain death’ concept are typically dismissed condescendingly as simpletons, religious zealots or pro-life fanatics,” and announced that he was joining their ranks….

In 2015, after Nailah filed her taxes, her accountant called to tell her that her submission had been rejected by the I.R.S. One of the “dependents” she’d listed was deceased. “I was, like, Oh, God, now I have to tell this guy what is going on—that she’s alive on a state level and dead on the federal level,” she said. She decided not to fight the I.R.S.; she was sure that she’d lose. “It’s not even about money,” she told me. “It’s the principle: I really have a human being that I get up and see about every day.”…

Dolan submitted video recordings of Jahi and declarations from Machado, three New Jersey doctors who had examined her, and Shewmon, who concluded that Jahi had fulfilled the requirements of brain death at the time of her diagnosis but no longer did. He wrote, “With the passage of time, her brain has recovered the ability to generate electrical activity, in parallel with its recovery of ability to respond to commands.” He described her as “an extremely disabled but very much alive teenage girl.”…

Daniel Wikler, the Harvard philosopher, told me that he guessed Jahi’s family might be suffering from “folie √† famille,” a rare condition in which a delusion is shared by all members of a family. It struck me as a coherent response to the death of a child: who wouldn’t find comfort in the fantasy that the child’s will had been preserved? It seemed so intuitive that I worried I could also be investing undue meaning in gestures nearly too subtle to discern. Given the weight of the evidence, though, it seemed unlikely. Jahi’s doctors and nurses were all converts, too. On Nailah’s cell-phone recordings, which document the past four years of her daughter’s life, several different nurses can be heard congratulating Jahi for gathering the strength and commitment to move a foot or a finger…

Jordyn has learned that if she wants to have a conversation in her sister’s room she needs to stand on the same side of the bed as her mother. “Jahi doesn’t like when two people talk over her,” Nailah said. “Her heart rate shoots up.” It makes Jahi nervous and upset, Nailah said, to be treated as if she didn’t exist. “She listens to everybody’s conversations—she has no choice,” she said. “I bet she has some secrets she can tell us.” She smoothed back Jahi’s hair. “You know how sometimes, when 
you’re just sitting still, thinking, you can take yourself somewhere else? I always say, ‘Jahi, one day, I want to know everything you know and everywhere that you’ve been.’ ”

https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die

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