What does it mean to die?

Robert Truog, the director of the Center for Bioethics at Harvard Medical School, said that he was troubled by the tone of the media coverage. “I think that the bioethics community felt this need to support the traditional understanding of brain death, to the point that they were really treating the family with disdain, and I felt terrible about that,” he told me. Truog thought that the social context of the family’s decision had been ignored. African-Americans are twice as likely as whites to ask that their lives be prolonged as much as possible, even in cases of irreversible coma—a preference that likely stems from fears of neglect. A large body of research has shown that black patients are less likely to get appropriate medications and surgeries than white ones are, regardless of their insurance or education level, and more likely to receive undesirable medical interventions, like amputations. Truog said, “When a doctor is saying your loved one is dead, and your loved one doesn’t look dead, I understand that it might feel that, once again, you are not getting the right care because of the color of your skin.”…

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.

The commission’s staff philosopher, Daniel Wikler, a professor at Harvard and the first staff ethicist for the World Health Organization, told me that he didn’t think the commission’s theory of death was supported by the scientific facts it cited. “I thought it was demonstrably untrue, but so what?” he said. “I didn’t see a downside at the time.” Wikler told the commission that it would be more logical to say that death occurred when the cerebrum—the center for consciousness, thoughts, and feelings, the properties essential to having a personal identity—was destroyed. His formulation would have rendered a much broader population of patients, including those who could breathe on their own, dead.

Despite Wikler’s reservations, he drafted the third chapter of the report, “Understanding the ‘Meaning’ of Death.” “I was put in a tight spot, and I fudged,” he told me. “I knew that there was an air of bad faith about it. I made it seem like there are a lot of profound unknowns and went in the direction of fuzziness, so that no one could say, ‘Hey, your philosopher says this is nonsense.’ That’s what I thought, but you’d never know from what I wrote.”…

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. The concept is also treated with skepticism in Japan, owing in part to distrust of medical authority. Japan’s first heart transplant, in 1968, became a national scandal—it was unclear that the donor was beyond recovery, or that the recipient (who died shortly after the transplant) needed a new heart—and, afterward, the country never adopted a comprehensive law equating brain death with the death of a human being. 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.”

Nailah kept thinking about a conversation that she’d had with her children a year before. She’d been teasing them, saying, “I’m going to run your business for the rest of your lives.” When her son bragged that he’d outlive her, she joked, “Well, I’m going to get put on a ventilator.” Jahi had never heard the word and asked what it meant. “It’s a machine that keeps you alive,” Nailah explained. She told me, “I’ll never forget: the rest of the kids laughed, and Jahi said, ‘Well, if something ever happens to me, make sure you keep me on one of those.’ ”…

Not long after the family moved in, two detectives and a patrol officer showed up at the apartment. The Franklin Township Police Detective Bureau had received an anonymous tip that there was a dead body in the house. Nailah led the detectives into Jahi’s room and showed them her ventilator. The cops concluded that there was no criminal activity and left, but the nurse on duty was rattled, and she quit…

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.

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…

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…

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.”…

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.”…

Shewmon’s research on what he calls “chronic survival” after brain death helped prompt a new President’s council on bioethics, in 2008, to revisit the definition of death. The council’s report referred to Shewmon’s research thirty-eight times. Although it ultimately reaffirmed the validity of brain death, it abandoned the biological and philosophical justification presented by the 1981 President’s Commission—that a functioning brain was necessary for the body to operate as an “integrated whole.” Instead, the report said that the destruction of the brain was equivalent to death because it meant that a human being was no longer able to “engage in commerce with the surrounding world,” which is “what an organism ‘does’ and what distinguishes every organism from nonliving things.”

In a personal note appended to the end of the report, the chairman of the council, Edmund Pellegrino, expressed regret regarding the lack of empirical precision. He wrote that attempts to articulate the boundaries of death “end in some form of circular reasoning—defining death in terms of life and life in terms of death without a true ‘definition’ of one or the other.”

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.”

The hospital hired its own medical experts. Thomas Nakagawa, who wrote the 2011 guidelines for pediatric brain death, said that the only accepted criteria for brain death were those stipulated by the guidelines. MRI scans, the heart-rate analysis, the videos of movement, and the evidence of menstruation were not relevant to the criteria. Sanford Schneider, a professor of pediatrics at the University of California, Irvine, referred to Jahi as a “corpse,” and told the court that she “cannot respond to verbal commands, because she has no cerebral mechanism to hear sound,” a conclusion based on a test that measured Jahi’s brain-wave activity in response to different noises. Schneider wrote, “There is absolutely no medical possibility that J McMath has recovered, or will someday recover, from death.”…

Nailah’s lawyer, Dolan, a registered organ donor, told me that he struggles with the practical consequences of advocating for Jahi. “There’s a part of me that’s, like, Shit, we may screw up organ donation,” he said. When families in similar situations call him, he tells Nailah’s story to warn against following her path. “This is like Job,” he said.

Truog, the director of the Center of Bioethics at Harvard, said that once, when he gave an academic talk on brain death, he described it as a catastrophic brain injury, rather than death. A transplant physician stood up and told him, “You should be ashamed of yourself. What you are doing is immoral: to put doubts in the minds of people about a practice that is saving countless lives.” Truog told me, “I’ve thought long and hard about that. In order to support public trust in the scientific enterprise, I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know.”

He continued, “I don’t think there’s anything morally wrong with the fact that we take organs from these people, even though there is no scientific reason for believing them to be dead. I believe it is a morally virtuous thing to do and we ought to facilitate it. We are doing the right thing for the wrong reasons.”…

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