What is it like to die?

US, WASHINGTON (ORDO NEWS) — Shortly before a tonsillectomy, Jahi McMath, a 13-year-old African-American girl from Auckland, California, asked her doctor Frederick Rosen a question regarding his qualifications.

– How many times have you done this operation?

“A hundred times,” Rosen answered.

“Did you sleep well last night?”

“Yes, good,” was the answer.

Jahi’s mother Niall Winkfield encouraged her daughter to continue to ask questions. “This is your body,” she said. “Feel free to ask this person about everything that interests you.”

Jahi begged not to do this operation, but her mother said that it would be better. Jahi suffered from sleep apnea, which made her very tired and could not concentrate at school. She snored so loudly that she was ashamed to go to night parties. Niall raised four children alone, and Jahi, the second oldest, was the most cautious of all. When she saw on television news about wars in other countries, she quietly asked: “Will the war come to us?” Her classmates laughed at her fullness, but she bore the insults silently. Several times, Niall personally asked teachers to more closely monitor the behavior of other students.

The operation took place at Auckland Children’s Hospital and took four hours. When Jahi woke up — about 7 p.m. on December 9, 2013 — the nurses gave her grape ice cream to relieve a sore throat. After about an hour, Jahi began to spit blood. The nurses told her not to worry and gave out a plastic basin. One of them recorded that she had asked Jahi “to relax and not cough as much as possible.” By nine o’clock in the evening the bandages covering the girl’s nose were saturated with blood. Naila Marvin’s husband, a truck driver, repeatedly demanded a doctor help. But the nurse said that only one family member can enter the room at a time. He agreed to go out.

Niall, who worked at Home Depot, said: “Nobody listened to us, and I can’t prove anything, but I feel that if Jahi was a white girl, we would get more help and attention.” Crying, she called her mother Sandra Chatman, a thirty-year-old nurse who worked at the Kaiser Permanente Surgical Clinic in Auckland.

Sandra, a good-natured and calm woman who loves to wear a flower in her hair, arrived at the hospital at ten o’clock. When she saw that Jahi had filled a two hundred-millimeter basin with blood, she told the nurse: “This is not normal. Do you really think this is the norm? ” In her notes, the nurse wrote that “several times per shift” she notified the doctors on duty about Jahi’s bleeding blood. Another nurse wrote that the doctors “knew about this postoperative bleeding,” but said that “immediate intervention by ENTs or surgeons is not required.” Rosen has already gone home. In his medical records, he indicated that Jahi’s right carotid artery was abnormally close to the pharynx – a congenital condition that could potentially increase the risk of hemorrhage. But the nurse responsible for her recovery didn’t seem to know therefore, they did not mention this in their notes. (Rosen’s lawyer said he couldn’t talk about Jahi’s condition; the hospital also couldn’t comment on the privacy law of medical information, but the lawyer said the staff were satisfied with Jahi’s care.)

There were twenty-three beds in three wards in the intensive care unit. A doctor stood at the other end of Jahi’s room, and Sandra asked him: “Why don’t you monitor my granddaughter’s condition?” The doctor instructed the nurse on duty not to change Jahi’s hospital shirt in order to assess the amount of blood lost and sprinkle Afrin in her nose. Sandra, who conducts workshops at the Kaiser Permanente on the “Four Habit Model,” a method for improving patient empathy, was, she said, surprised that the doctor had not bothered to introduce herself. “He frowned and crossed his arms over his chest,” she said. “As if he considered us some kind of filth.”

At 12:30, Sandra saw on Jahi’s monitor that the level of oxygen saturation dropped to 79%. She called for help, several nurses and doctors came running and began to intubate the girl. Sandra heard one doctor say, “Damn it, my heart stopped.” It took two and a half hours to restore Jahi’s heartbeat and stabilize her breathing. Sandra said that the next morning, Rosen looked like he was crying.

Two days later, doctors ascertained the death of Jahi’s brain. She was breathing with mechanical ventilation, but the pupils did not respond to light, there was no gag reflex, and her eyes remained motionless despite irritants. She was briefly disconnected from the ventilator, but her lungs were filled with carbon dioxide. The electroencephalogram did not record the activity of brain waves.

Like all other states, California lives under the 1981 Single Death Act, which states that anyone who has undergone “irreversible termination of all brain functions, including the trunk, is considered dead.” State law requires hospitals to give their relatives some time to say goodbye before shutting down the ventilator, but keep in mind the “needs of other patients and people who need urgent care.”

At a meeting with Rosen and other medical professionals, the family demanded an apology. According to the report of the social worker present at the meeting, Rosen “expressed sympathy”, but this did not suit the girl’s relatives. “Resign,” Marvin urged him. “All of this was fundamentally wrong!” And Sandra said that Jahi didn’t “get the treatment she deserved.”

Over the next few days, the social worker repeatedly called on the Jahi family to plan her disconnection from the ventilator. She also recommended considering donating her organs. “We refused,” said Marvin. “Because they wanted to start to know what happened to her.” The family asked Jahi for a medical card, but since she was still in the hospital, the doctors could not. Niall did not understand why Jahi was recognized dead, because her skin remained warm and soft, and sometimes the girl moved her hands, feet and hips. Doctors called it nothing more than a spinal reflex, described in the medical literature as a “symptom of Lazarus.”

An intensive care and resuscitation doctor named Sharon Williams (African American) asked the hospital administration to give the family a little more time, adding that such an early disconnection of Jahi from the ventilator is contrary to the interests of the family. And a week later, Williams summoned Sandra to a female conversation. According to Sandra, the doctor told her that if you overexposure Jahi on the device, at the funeral she will not look very good, “well, you know, how we all are.” (Williams herself does not agree with this description of the conversation.)

“Who are we”?” Sandra thought. “Are we African-American? I felt terrible humiliation. Yes, many black children are dying in Auckland and people arrange funerals for them, but that does not mean that we are all the same. You think we should get used to it that our children are dying, what is the order of things for blacks? ” She said: “At that moment, I lost all confidence.”

Niall’s younger brother, Omari Sealey, was sleeping in a chair next to Jahi’s hospital bed to make sure no one would kill her. He said: “I just felt that in their eyes her life was worth almost nothing. It was as if they were trying to drive us away. ” He, like the former baseball star at the University of California at San Diego, had a lot of fans on social networks, and on Instagram and Facebook he announced that the hospital was urging them to quickly disconnect Jahi from the ventilator. “They are trying to suck us in legal bullshit,” he wrote. “Only God decides when it will end.” In the comments, one of his friends wrote: “Just universal disrespect !!!! FUCK SUCH A HEALTH SYSTEM !!! ” Another said: “They want to see us either dead or in prison, just not alive.”

One week after the operation, Siley called Christopher Dolan, a lawyer for personal injury, and told him: “They want to kill my niece.” Dolan agreed to take the case on a free basis, although he had no experience in such matters. He was guided by only one vague feeling that a child with a beating heart cannot be considered dead completely. He wrote an order prohibiting the continuation of unlawful actions: if doctors disconnect Jahi from mechanical ventilation, they will violate the civil rights of herself and her family. Smiley stuck a note on Jahi’s bed and a pulse oximeter.

In his petition to the Supreme Court of the Alameda County, Dolan requested an independent doctor be invited to examine Jahi. He wrote about the conflict of interest of the hospital, because if its doctors are found guilty of malpractice, they can “drastically reduce their responsibility by interrupting the life of Jahi.” In the event of death resulting from unlawful acts, California charges $ 250,000 for damage caused by pain and suffering. But the amount that can be judged when the patient is still alive, there are no restrictions. In a separate petition, Dolan claimed that the hospital violates Niall’s right to express his religious beliefs. As a Christian, she believed that her daughter’s soul would remain in her body as long as her heart beat.

On December 19, ten days after the operation, David Duran, first vice president and chief physician of the hospital, met with his family. They requested that Jahi be left on the ventilator before Christmas, hoping for a reduction in the brain tumor. Durant refused. They also asked for a probe for artificial nutrition. Durant rejected this request. He later wrote that the very idea that the procedure would help the girl recover was “completely absurd” and only support the “illusion that she is still alive.”

When they began to persist, Durant asked: “What is not clear to you?” According to mother, stepfather, grandmother, brother Jahi, and Dolan taking notes, Duran pounded the table with his fist, saying: “She is dead, dead, dead!” (The head physician himself denies these allegations.)

Three days before Christmas, a group of Auckland church leaders gathered outside the hospital and asked the district attorney to investigate what had happened to Jahi. “Isn’t Jahi worthy of getting full medical care?” – Brian Woodson Sr., pastor of one of the local Christian churches, asked at a press conference.

The next day, Evelio Grillo, a judge of the Supreme Court of Alameda County, instructed independent expert Paul Fisher, head of the neurology department at Stanford University Children’s Hospital, to examine Jahi. During the hearing, two hundred people marched in front of the hospital, holding posters in their hands that read: “Justice for Jahi!” and “Doctors may be wrong!” About a quarter of the protesters were Niall’s friends and neighbors. She lived a short walk from her mother, and she lived a few blocks from her own, who moved to East Auckland from Opelousas, Louisiana, in the midst of the civil rights movement.

Fisher repeated the routine examination and tests for brain death and confirmed the hospital’s conclusion. He also conducted a radionuclide study of cerebral blood flow. “Only an absolute void is visible, a white spot in that part of the head where the brain is located,” he told Judge Grillo the next day. “Usually this place is black.” Grillo ruled that the hospital could disconnect Jahi from the ventilator after six days.

The family created a page on GoFundMe to raise funds for transferring Jahi to another hospital (“We recognize that the game is not in our favor,” wrote Niall), and received more than fifty thousand dollars from strangers who learned about this case. from the media. The Terri Schiavo Life & Hope network, an organization founded by Terry Schiavo’s parents and brothers, who had been in a vegetative state for fifteen years, suggested using their contacts to find a suitable clinic. Niall never thought about the issue of the right to life. As for abortion, she was a proponent of choice. “I just wanted to get her out of there.” And Sandra said she sometimes wonders, “would we have to fight as fiercely, had the hospital shown more compassion?”

Niall asked the children’s hospital to perform a tracheotomy, an operation that allows air from the ventilator to be pumped directly into the breathing tube – a safer way for Jahi to breathe when transported to the new hospital. The hospital’s medical ethics committee unanimously concluded that any intervention was inappropriate. “None of the possible goals of medicine – preserving life, treating illnesses, restoring functions, alleviating suffering – cannot be achieved with the help of ventilation and artificial support for a dead patient,” they wrote. They said that the doctors and nurses caring for Jahi were experiencing “enormous moral suffering” and that meeting family requests would raise “serious questions about honesty and justice.”

Shortly before the expiration of the protective court order, Grillo extended it for eight days. Soon after, Dolan and the hospital’s hospital lawyers reached the following agreement: the hospital will extradite Jahi to the coroner of Alameda County, who will pronounce her dead. Then the family will bear “full and exclusive responsibility” for her.

On January 3, 2014, the coroner issued a death certificate for Jahi. In the column “cause of death” he wrote “the investigation is not completed.”

Two days later, two nurses from the evacuation service by air entered the Jahi ward. A doctor from the children’s hospital disconnected her from the ventilator, and the nurses connected to the portable device and put them on a gurney. They drove her to an unidentified ambulance standing at the back door of the hospital. There was a game between San Francisco Forty Niners and Green Bay Packers that day, and Dolan hoped it would distract the crowd of journalists around the hospital. Dolan didn’t tell anyone where Jahi was going – even her family – because he was afraid that the hospital would find out about this and frustrate the plan.

Niall was the only member of the family who was allowed to board an airplane hired for funds raised with GoFundMe. She was horrified by the noise that her daughter’s portable respirator was making, seemingly drowning out the engine of the plane. Only after landing did she learn that they were in New Jersey, one of the two states – the second is New York – where families have the right to disagree with allegations of brain death if it is contrary to their religious beliefs. In both states, relevant laws were prescribed for Orthodox Jews, some of whom, referring to the Talmud, believe that breathing is equivalent to life.

The Jahis were sent to St. Peter’s University Hospital in New Brunswick, New Jersey, which is administered by the Roman Catholic Diocese of Metachen. Niall said she had “no plan, no housing – nothing.” She had only one suitcase with her. “When it comes to my child, I turn into an animal,” she told me.

The Children’s Hospital has hired Sam Singer, an expert on reputation protection in crisis situations, to work with media outlets. “The atmosphere inside the hospital was reminiscent of a state of siege,” Singer said. Two days after the departure, Jahi Singer (who is called the “best possible specialist”) gave an interview to a local newspaper: “I have never seen such a reckless neglect of the truth.” At a press conference, he said Dolan “created a fake.” Very sad fake. That Jahi Makmat is somewhat alive. This is not true. She died by all the laws of the state of California. And any spiritual belief system imaginable will recognize this.”

Specialists in bioethics were equally dismissive of the family’s decision. In one of his articles for Newsday, Arthur Kaplan, founding director of the medical ethics department at New York University and probably the country’s most famous bioethicist, wrote: “Maintaining life through a ventilator is a desecration of the body.” In an interview with CNN, he said that “there is no chance that in this state it can last a long time.” Answering questions from USA Today, he said: “Well, you can’t feed the corpse,” and “it will begin to decompose.” Lawrence McCullough, a professor of medical ethics at Cornell University, believed that no hospital should accept Jahi. “What are they thinking about?” He told a USA Today correspondent. “There is only one suitable description for all of this: insanity.”

Director of the Center for Bioethics at Harvard Medical School Robert Truog said he was worried about the media’s media coverage. “I think that members of the bioethics community felt such a strong need to support the traditional understanding of brain death that they really treated the family with contempt, making me feel terrible,” he told me. Truog believed that the social context of family decision was ignored. African Americans are twice as likely as whites to extend their lives for as long as possible, even in cases of irreversible coma – which is probably due to fear of neglect. A huge number of studies have shown that black patients are less likely to receive appropriate medications and surgeries than whites, regardless of insurance or educational level, and are more likely to undergo unwanted medical interventions such as amputations. Truog said: “I understand that when a doctor says that your loved one is dead, but he doesn’t look dead at the same time, it may seem that you are again denied proper care because of the color of your skin.”

Until the 1960s, the only possible cause of death was cardiorespiratory failure. The idea that death can be diagnosed in the brain arose only with the advent of modern ventilators, with the help of which the manipulation, known at the time as “oxygen treatment”, was performed: while oxygen-carrying blood reached the heart, it could continue to beat. In 1967, Henry Beecher, a well-known bioethicist at Harvard Medical School, wrote to one of his colleagues: “It would be very desirable for Harvard University to come to any conclusion regarding a new definition of death.” Across the earth, the number of “patients in a state of coma, supported by ventilators, has grown, and there are a number of problems that should be addressed.”

Beecher set up a committee that included ten doctors, a lawyer, a historian, and a theologian. In less than six months, they completed the report, which was published in the Journal of the American Medical Association. The only quote cited in the article belonged to the pope. They put forward the suggestion that irreversible brain destruction processes must be considered death, citing the following reasons: in order to alleviate the burden of families and hospitals that provide meaningless care for hopeless patients, and accept the fact that “outdated criteria for determining death can lead to disagreements regarding the removal of organs for transplantation ”; in the previous five years, doctors performed the world’s first transplantation of the pancreas, liver, lungs, and heart. In an earlier version of the report, the second reason was stated in more detail: “There is a great need for the tissues and organs of hopeless patients in a coma to restore the health of those who can still be saved.” (The proposal was revised after the Dean of the Harvard School of Medicine announced an unsuccessful connotation.)

Over the next twelve years, 27 states redefined the definition of death in order to comply with the conclusions made by members of the Harvard Committee. Thousands of lives were prolonged or saved each year, because now patients who have reported brain death — this form of death was ultimately accepted by the United Kingdom, Canada, Australia, and most of Europe — could donate their organs to others. Philosopher Peter Singer called it “a concept so desired in its consequences that it is impossible to abandon it, and so shaky in its justification that it is practically impossible to support it.” The new death was “an ethical choice disguised as a medical fact,” he wrote.

Legal uncertainty persisted – people who were believed to be alive in one region could be pronounced dead in another – and in 1981, the Presidential Commission on Ethical Studies proposed a unified definition and theory of death. Her report, which was approved by the American Medical Association, said that death is the moment when the body ceases to function as a “whole.” Even if life is preserved in separate organs and cells, a person can no longer be considered alive, since in this case the functioning organs are nothing more than a totality of artificially supported subsystems doomed to destruction. “Usually the heart stops beating in a period of two to ten days,” the report said.

Commission staff philosopher Daniel Wickler, a professor at Harvard University and the first corporate ethics specialist at the World Health Organization, told me that the commission’s theory of death was confirmed by the scientific facts to which it referred. “It seemed to me that this was a clear lie, but so what?” He said. “At that time, I did not see a single negative point.” Vikler told the commission that it would be more logical to say that death occurs at the time of the termination of the functioning of the large brain, that is, the center of consciousness, thoughts and feelings – the properties necessary for possessing a personal identity. Its formulation would “kill” even more patients, including those who were able to breathe on their own.

Despite Wickler’s remarks, he prepared the third chapter of the report, “Understanding the Importance of Death.” “I was put in a difficult position and I did the job in bad faith,” he told me. “I knew that all this smelled of treachery, and created the appearance of many unknowns and took the path of vague facts, so no one could say:“ Hey, your philosopher considers this nonsense. ”That’s what I thought, but in the written you you will never see anything like it.”

What is it like to die

When doctors ascertained the death of Jahi Mcmath’s brain, her family did not agree. The case of this girl challenges the very nature of human existence.

When Jahi arrived in New Jersey, she had not been fed for more than three weeks, and authorities began to refuse. The head of the pediatric resuscitation department at St. Peter’s Hospital noted in her notes that “there is no hope for brain restoration.” Niall said: “I did not imagine the whole situation and really thought that I would get her a tube for feeding and ensure that the tracheotomy was performed, she would wake up, stand up, and everything would be fine.” In the hospital cafeteria, she saw other families whispering about her.

A surgeon from St. Peter’s Hospital provided Jahi with a tracheal tube and a feeding tube through which the girl received nutrition and vitamins. Niall, who spent all the time in the hospital, made friends with some nurses who told her that the surgeon who was performing the tracheotomy was being harassed by her colleagues. “They asked, supposedly, ‘did you operate that dead girl?” She said. (The hospital did not answer the phone to talk about this case; on the Jahi medical record, the doctor wrote that the administration of St. Peter’s Hospital agreed to treat her “without the consent of the medical staff.”)

Niall and Marvin spent the night in the house owned by the hospital, until after three months they were told that they needed to reconcile and make room for other families. They took a taxi and went to the motel. Over the next three months, they stayed in motels with the most favorable weekly rates. The Home Depot Human Resources department continued to call Niall to find out when she would be back. “I don’t know,” she answered. Finally, they stopped calling. Niall, who had her own house in Auckland, told me: “I had the feeling that I was kicked out of my native state.”

By March, Jahi’s condition began to stabilize. Her skin became more elastic, her limbs and face less swollen, and her pressure stabilized. In their progress notes, doctors wrote simply: “status quo.” No rehabilitation institution would accept her as a patient, so she remained in the intensive care unit of the hospital, and the treatment was paid for under the Medicare program. According to Niall, the cost of care was approximately $ 150,000 per week. Under the New Jersey Death Act of 1991, insurance companies cannot refuse insurance because of “personal religious beliefs regarding the use of neurological criteria for declaring death.” Alan Weissbard, executive director of the bioethics commission that drafted the law, told me: “I thought our position should be delicate, not unconditional.”

Weisbard previously served as assistant chief of the legal department of the presidential death commission, and, like Wickler, was tormented by the result. He said: “I think that people who have thought deeply and conceptually about brain death have a high level of intelligence and highly value their cognitive abilities; they believe that a full life requires the ability to think, plan and act. But there is another tradition. ” The concept of brain death has been rejected by some Native Americans, Muslims, and Protestants, as well as Orthodox Jews. In Japan, this concept is also skeptical, partly due to mistrust of health services. Japan’s first heart transplant in 1968 turned into a national scandal – it’s unclear whether the donor was hopeless and whether the recipient (who, incidentally, died shortly after transplantation) needed a new heart – and after that the country never adopted a full-fledged law that equates brain death with human death. Weisbard, as a religious Jew, does not think that “minority communities should be forced to adopt a definition of death that violates their worldview and feelings.”

Niall continued to think about the conversation that took place between her and the children a year ago. She teased them, saying, “I will do your business for the rest of my life.” When her son boasted that he would outlive her, she joked, saying “I will get IVL.” Jahi never heard the word and asked what it means. “This is an apparatus that supports life in a person,” Niall explained. She told me: “I will never forget how the other children laughed, and Jahi said: ‘Well, if something happens to me, make sure that I will have one too.”

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 the harp. Niall noticed that Jahi’s usually high pulse was decreasing when the music sounded.

Niall says she knew that her daughter was alive. She began to ask doctors to give her the opportunity to knead different parts of her body. During one of the studies that Niall recorded on her cell phone, she is standing at Jahi’s hospital bed without touching her. Jahi’s eyes are closed, and the upper half of the bed is raised at an angle of 45 degrees. So that their hands are not clenched into fists, they lie on rolled up towels. “Take your hand away,” Niall says. Two seconds later, Jahi lifts his right wrist. “Fine! – Niall rejoices. “Can you move your hand again?” Move your hand so we can see it. Come on stronger. ” Nine seconds later, Jahi strains his forearm, turns his wrist, and raises his fingers. Her face is still expressionless and motionless.

In another video, Niall says, “Move your foot.” Jahi’s blue blanket is thrown back, revealing his feet and ankles. Fifteen seconds later, she moves her toes. “Try again,” Niall says. “I see you moving your toes, but you have to move your whole foot.” Twenty-two seconds later, Jahi does this. “Oh, I’m so proud of you,” Niall says, leaning toward her daughter and kissing her on the cheek.

Seven months after moving to New Jersey, Jahi began menstruating. Sandra, who was sitting with her, asked the doctor to give Jahi a heating pad and Motrin – all the women in her family suffered from severe convulsions – and note the fact of her first menstruation in the girl’s medical record. The doctor told Sandra and Niall that he could not name the exact cause of the bleeding. Niall told him: “For five days, blood has been bleeding from the vagina of a teenage girl – what else could it be? There are other options?” And Sandra said that they were both so excited that the doctor finally could not stand it and sent them for a walk in the park.”

In late August 2014, Jahi left St. Peter’s Hospital with a brain death diagnosis and moved to a two-bedroom apartment that Niall and Marvin rented in an unremarkable residential complex near New Brunswick. They slept on an air mattress, and on the couch was Jordin, who had just moved to New Jersey to go to first grade. Jahi had the brightest room with a large window and a view of the parking lot. Nurses paid by Medicaid worked eight hours, providing round-the-clock care. Every four hours, Niall helped them turn her daughter’s body over. One of Jahi’s most sympathetic nurses attached a note to the wall of her bedroom: “Talk to her during the shift. She really hears you! Speak clearly, quietly and slowly. No one knows if she understands speech.

Shortly after the family moved, two detectives and a patrol appeared in the apartment. The Franklin Township County Police Detective Bureau received anonymous information about a dead body in the house. Niall led the detectives into Jahi’s room and showed them the ventilator. Not finding traces of criminal activity, the cops left, and the nurse on duty was scared and quit. For several months, Nailu was accused of child abuse and the use of her daughter for profit by e-mail and Facebook. Strangers set up on Change. org a petition requesting the state of New Jersey to stop caring for the corpse from taxpayer money; the petition said that Niall bought a purse from Michael Kors and expensive wine, and the charge was based only on photographs on Instagram. Niall’s lawyer Mr. Dolan told me:

Niall was saved by reading the Bible and tried to console herself with the thought that God had sent her this suffering because she was strong enough to endure it. On her Facebook page, she christened herself “an ordinary strong black woman who is reluctant to listen to all kinds of nonsense!” But to the end she could not accept divine logic. “I really don’t feel that God had just such a plan for my child,” she shared.

One month after Jahi’s discharge, the International Brain Research Foundation, a neuroscience think tank that supports new research, helped Jahi’s family pay for an MRI at the New Jersey Rutgers Medical School. To analyze the results, the president of the Cuban Society of Clinical Neurophysiology Calixto Machado flew in New Jersey. He has published over two hundred articles on impaired consciousness and holds symposiums every four years at which leading scholars studying brain death issues gather. He said the following: “Everyone spoke of Jahi — Jahi then, Jahi se — and no one knew the neurological picture.” The fact that Jahi began menstruating – a process activated by the hypothalamus that are located near the front of the brain – made him realize

Dolan was next to Machado in the hospital when he was looking at two monitors showing images of Jaha’s head and the top of her spine. In those rare cases where patients diagnosed with brain death undergo mechanical ventilation, neurologists have reported a phenomenon called the “respiratory brain” when it liquefies. Machado said that if Jahi’s initial diagnosis was correct and there was no cerebral blood flow for nine months, he did not expect to see tissue in her cranial cavity, only fluid and randomly located membranes.

In the pictures, Machado noticed that Jahi’s brain stem had virtually disappeared. Nerve fibers connecting the right and left hemispheres of the brain were barely distinguishable. But large sections of her brain, which activate consciousness, language, and conscious movements, were structurally intact. Dolan shouted: “Her brain is in place!”

Machado also conducted a study to measure the interaction between the sympathetic and parasympathetic nervous systems – relationships that regulate states of arousal and rest. He used three experimental conditions, one of which was called “Mother is talking to the patient.” Niall stood next to her daughter, not touching her. “Hey Jahi, I’m here,” she said. – I love you. Everyone is so proud of you. ” Machado noted that in response to his mother’s voice, Jahi’s pulse changed. “For patients with a dead brain, this cannot be,” he concluded.

Three days after the scan, Dolan submitted Machado’s report to the office of the Alameda County coroner and asked him to cancel Jahi’s death certificate so that Niall could return to California and provide her daughter with the necessary treatment. Coroner and the County Department of Health rejected the request. “All the deadlines for the annulment of a court decision on the death of Jahi Makmat have long expired,” their lawyers wrote.

Alan Shewmon, who had just stepped down as head of the neurology department at UCLA Medical Center, read Machado’s report and asked if Jahi had a condition of ischemic penumbra (the term was first proposed by a Brazilian neurologist named Coimbra). Coimbra suggested that such a condition could lead to an erroneous diagnosis of brain death in patients whose cerebral blood flow was so insignificant that it was not detected using standard studies. If blood still rushes to various parts of the brain, albeit slowly, then theoretically some degree of recovery is possible.

Shevmon diagnosed “brain death” with approximately two hundred people. This person is restrained, formal and accurate. When I asked him what he thinks about the media statements about the imminent death of Jahi, he thought and said: “I do not pay attention, let everything go as it should.” He laughed – louder than I expected – and said nothing more.

Two months after Machado’s analysis, Shevmon flew to New Jersey to visit Jahi. He placed a chair next to her bed and, armed with a notebook, watched her for six hours. Jahi did not respond to his instructions to move a finger, but the expert did not consider this indicative. He analyzed the video recorded by Niall and saw that Jahi was in a state of minimal consciousness, in which patients partially or periodically recognize themselves and their surroundings. He wrote that her condition “can neither be refuted nor confirmed, because the probability of Jahi being in a“ capable of reaction ”state during the examination is small.”

After Shevmon left, Niall made many more videos. She followed the instructions of a specialist not to touch her daughter during filming and to start filming outside her room. In the end, Shevmon analyzed forty-nine videos containing 193 teams and 668 movements. He wrote that the movements take place “earlier than one would expect in the event of an accidental occurrence.” He noted that the movements “have no resemblance to any reflex” and that in one video Jahi seemed to demonstrate a complex level of linguistic understanding. “Which finger is shown,” Niall asked her, “when are you angry with someone?” Two seconds later, Jahi bent her left middle finger. Then she bent her little finger. “Not that one,” Niall said. Four seconds later, Jahi moved her middle finger again.

James Burnath, a neurologist from Dartmouth who helped develop the theory of brain death that formed the basis of the 1981 president’s commission report, told me that Shevmon showed him some videos. “I still can’t fully articulate my thoughts,” he said. “I’m always skeptical of the videos after the Terry Schiavo incident.” Her family uploaded the video clips, presenting them as evidence of her presence of consciousness, but they were edited and gave the impression of eye movements, although in fact the girl was blind. Bernat said: “I highly respect Alan, and if he talks about something, then I will definitely listen.” He called Shevmon the most intellectually honest person he had ever met.

While still a sophomore at Harvard College, Shevmon listened to Chopin in his room in the hostel “Three New Etudes No. 2”, and the music brought him to such ecstasy that enlightenment descended on the young man: he no longer believed that all conscious experiences, especially perception beauty can be “a simple electrophysiological concomitant symptom.” Music seemed to go beyond the “spatial limitations of matter.” A former atheist, he converted to Catholicism and began to study Aristotle’s philosophy and Thomism. In 1971 he entered medical school, and then specialized in neurology, because he longed to understand the relationship between the mind and the brain.

Over the next fifteen years, he believed in the concept of brain death and defended it, but in the early nineties it began to bother him more and more. Conducting so-called “Socratic conversations” with colleagues, he realized that few doctors could confidently articulate why the destruction of one organ is considered synonymous with death. Usually they called such patients still living biological organisms, while losing the abilities that made them human. He believed that such a formulation too much resembles the idea of ​​“mental death”, which the Nazis adopted after the publication in 1920 of a popular medical and legal text entitled “Permission to destroy life, an unworthy life.”

In 1992, Shevmon was asked for advice on the case of a fourteen-year-old boy who was declared dead after falling from the hood of a moving car. The boy’s family was religious and insisted that he stay on mechanical ventilation. Doctors, confident that soon the child’s heart could not stand it, agreed with the request of the parents. He lived 63 days and entered the phase of puberty. “This incident challenged everything I knew about the universality and inevitability of somatic death during brain death,” Shevmon wrote later. “It made me rethink everything.”

Chevmon began investigating similar cases and found 175 people, many of whom were children or adolescents who lived for several months and even years after they were legally declared dead. The boy lived the longest, whose death was ascertained after infection with meningitis at the age of four. His heart was beating for another twenty years, during which he grew and recovered from minor wounds and infections, even in the absence of a recognizable brain structure, and from the outside he underwent calcification. In 1997, in an article entitled “Recovery from Brain Death: An Apology for a Neurologist,” Shevmon disavowed his previous views. He admitted that “those who disagree with the concept of” brain death “are considered, as a rule, simpletons, religious fanatics or fanatics in defense of human life,” and announced that he joins their ranks.

Shevmon’s research on what he calls “chronic survival” after brain death forced the new Presidential Bioethics Council to redefine death in 2008. The report from the Shevmon Research Council mentioned 38 times. Although he ultimately confirmed the validity of brain death, he rejected the biological and philosophical rationale presented by the 1981 presidential commission that a functioning brain is necessary for the body to work as a “whole.” As an alternative, the report says that brain destruction is tantamount to death, since this means that a person can no longer “interact with the outside world,” and this is what the body does, and this is what distinguishes it from non-living matter.

In a personal note attached to the report, Board Chairman Edmund Pellegrino regretted the lack of empirical accuracy. He wrote that attempts to formulate the boundaries of death “end with illogical reasoning – the definition of death from the point of view of life and life from the point of view of death without a true” definition “of both.”

In 2015, after Niall filed a tax return, her accountant called to report that the document was rejected by the Internal Revenue Service due to the death of one of the listed “dependents”. “I thought: God, how can I explain to this guy that she is dead at the federal level, and at the state level she is alive,” she said. She decided not to mess with the tax authorities, because she was sure that she would lose. “It’s not about money, but in principle,” she told me.

Niall sold her house in Auckland to pay rent in New Jersey. She almost never left the apartment, devoured by a sense of guilt for convincing Jahi to remove the tonsils, and she was diagnosed with depression. “Before, I watched an advertisement for antidepressants, where people look out the window and say that they cannot go outside, and I thought it was funny. Who can’t go out? Who can’t get out of bed? Where I come from, everyone has survival skills: people learn to adapt, even in cases of poverty or problems. But now I am in a situation that I can’t adapt to.”

In the spring of 2015, Niall filed a lawsuit against Auckland Children’s Hospital for abuse of power, claiming damages for Jahi’s pain, suffering and medical expenses. The hospital claimed that the bodies of the deceased did not have legal standing. “The plaintiffs prevent Jahi’s body from undergoing natural post-mortem procedures,” hospital lawyers wrote. “To make medical workers responsible for the costs associated with useless medical interventions for a deceased person means violating state policy.”

Dolan presented videos of Jahi and a statement by Machado, the three New Jersey and Shevmon doctors who examined her, who concluded that Jahi’s condition was consistent with symptoms of brain death at the time of diagnosis, but never again. He wrote: “Over time, her brain regained the ability to generate electrical activity, in parallel with the ability to respond to commands.” He described her as “extremely disabled, but alive as a teenage girl.”

The hospital hired its own medical experts. Thomas Nakagawa, who wrote a guide on brain death in children in 2011, stated that the only accepted criteria for brain death were the guidelines mentioned above. MRI, heart rate analysis, video recording of movements and evidence of menstruation did not meet these criteria. Sanford Schneider, a professor of pediatrics at the University of California, Irvine, called Jahi “a corpse” and told the court that she “wasn’t able to respond to verbal commands due to the lack of a brain mechanism for recognizing sounds” – a conclusion based on a study of the activity of Jahi’s brain waves in response to various noises. Schneider wrote: “There is absolutely no medical reason to believe that Jahi Makmat has recovered or will someday recover from death.”

Last summer, a judge of the Alameda County Supreme Court ruled that “there is a contentious issue of whether the Jahis currently satisfy the legislative definition of“ dead man. ” In court, which is expected to last a month, the jury will decide the girl’s fate.

Thaddeus Pope, a bioethicist at the Mitchell Hamlin University School of Law, calls the case “the shadow effect of Jahi McMath”: an increase in the number of families, many of whom are members of ethnic or racial minorities, is going to court to prevent hospitals from disconnecting their loved ones from ventilation. In Toronto, the family of Takishi McKitti, a young black mother who was declared dead due to an overdose of drugs, claimed that the woman could not die because she still had menstruation. At a court hearing last fall, her doctor said he knew about vaginal bleeding, but “no one knows if it was menstruation.”

A similar discussion started in 2015, when Aiden Hailu, a student at Ethiopian college, was diagnosed with brain death after an exploratory operation for abdominal pain in a hospital in Nevada. The district court rejected her father’s request to leave her daughter on artificial lung ventilation, but the State Supreme Court overturned the lower court’s ruling, finding that expert testimony was needed to determine “the adequacy of standard tests for brain death.” (The hearing did not take place because Hailu’s heart stopped beating.)

Pope told me that “every extra hour that is spent on one of these dead patients takes an hour away from someone else.” He is also concerned that these disputes, which often attract the attention of the media, will force people to change their mind about organ donation, and the social acceptability of this practice depends on confidence in the patient’s death before the removal of vital organs. When I expressed concern that my article could perpetuate the problem, he noted that the harm would not be so great. Then he changed his mind and said: “the secret has already become apparent.”

Niall’s lawyer, Dolan, being a registered organ donor, told me that he is constantly confronted with the practical consequences of protecting Jahi. “Part of me believes that this can put an end to organ donation,” he said. When families in similar situations call him, he tells the story of Niall and advises her not to follow her example.

Truog, director of the Center for Bioethics at Harvard, said that one day, in an academic presentation on brain death, he described the phenomenon as a serious organ injury, not his death. A transplant doctor from the audience turned to him: “You should be ashamed. What you are doing is immoral: to sow doubts in people’s minds about practices that save countless lives. ” Truog told me: “I thought about this for a long time. In order to maintain public confidence in the scientific community, I think that in the long run, the medical profession will always be a winner if we begin to honestly and truthfully talk about what we know.”

He continued: “I do not consider organ harvesting from these people to be morally wrong, although there is no scientific basis for believing that they are really dead. I see this as a virtuous act, and we must contribute to this. We are doing justice, though for unfair reasons.”

Although Jahi is a different way of defining life, her family is not sure that she will continue to keep her on a ventilator if she continues to fit the clinical picture of brain death. Sandra said that before Jahi did an MRI scan in Rutgers, she said to herself: “If her brain turns into jelly, we will have to accept it. People should not live like that. If a person has died, then he has died.”

The Jahi family believes that she is capable of a wider range of thoughts than she can express, which Shevmon also took into account. “Given the evidence of intermittent response,” he wrote in a statement to the court, “we should be more than ever ready to question the internal state of her mind during periods of lack of response, and not equate it automatically with the unconscious.” Recent advances in neuroimaging have led some doctors to consider the likelihood that a significant proportion of patients in a vegetative state — those who do not demonstrate a clear awareness of the world around them and who do not make purposeful movements — have made the wrong diagnosis; from time to time they can show consciousness and ability to a certain degree of communication.

Niall said she asked Jahi almost every day, “Do you think I’m doing the right thing?” Do you want to live? Are you suffering? ” She said, “I know everything is changing – people are changing. If Jahi gave up and no longer wants to be here, I will reconcile with her will. ” She said that Jahi answered her questions either by clutching her hand or by pressing her index finger on her mother’s thumb – a signal meaning “yes” that Neila taught her. “Seeing this,” she shared, “I think: who am I to not want to live? I often want to die. But then I look at her and see how she tries her best.”

Last December, I came to Niall’s apartment, and she said that she had become more optimistic. She was more confident that the courts would allow her to return Jahi home to Auckland, although no trial had yet been scheduled. She recently asked Jahi how much, in her opinion, all this would continue. Six months? Year? One and half year? Jahi squeezed her hand after the third question that Niall took it as an answer. “I’m constantly thinking about what a grand party I will have on the occasion of my daughter’s return home,” Niall told me. “I know that in our hometown we are very, very loved.”

“Hello girl, are you sleeping or not?” Niall Jahi asked when we entered her room. Jahi was wearing pink pajamas, her face was clean and smooth, but bloated – a side effect of steroids that she takes to increase blood pressure. Her eyes were closed. “Are you sleeping? I want to know, ”said Niall. She raised Jahi’s hand and took it with both hands. Jahi’s other hand lay on the belly of a bobblehead doll. Her hair was braided into thin pigtails. At her feet stood Stacy, the nurse who had been caring for Jahi for the past year. All morning she read to her about Sherlock Holmes.

Niall talked about how much she appreciated her own mother, who called Jahi three times a day, sang to her, read prayers, told family gossip and talked about her favorite Golden State Warriors. Stacy interrupted her, saying: “She moves her hand over the doll.”

Jahi’s forefinger and middle finger moved about half an inch from the doll’s belly to the chest. “Great,” said Stacy. “Well done, Jahi!”

“Can you put your index finger on the baby doll?” Niall asked. Jahi’s fingers, on which Naila painted pink nail polish, did not move. “This is your baby, and therefore my grandson,” Niall said, pointing to the doll and laughed. Jahi’s thumb wavered. “Not the thumb, but the index finger,” Niall asked. “I know you can.” After a few seconds, Jahi’s middle finger moved. She lifted it slightly and then laid it back. “Like that,” said Niall. – Thank”.

Harvard philosopher Daniel Wickler told me that the Jahi family may suffer from “family craziness,” a rare condition in which all members of the family share a certain fallacy. This makes sense as a coherent reaction to the death of a child: who will not find solace in the fantasy that some energy still lives in him? I was even worried that I myself could put extra meaning into my gestures. However, given the weight of the evidence, this seemed unlikely. Jahi’s doctors and nurses also believed in this. On Niall’s cell phone records that document her daughter’s last four years, you can hear the voices of several different nurses congratulating Jahi that she found the strength to move her foot or finger.

Jahi’s younger sister, Jordin, is also convinced that the girl is alive. A hot girl, dressed in faded skinny jeans and high Day-Glo sneakers, entered her sister’s room. In Auckland, she and Jahi lived in the same bedroom, and now she lay down next to her, sometimes applying her lip gloss or rubbing her feet with lotion. At school, Jordin was uncontrollable, and Sandra was worried that her bad behavior was due to a feeling of loneliness in the family. Once, when Jordin was jealous of her mother’s love for her sister, Niall said: “Do you think your sister would do this for you?” Jordin nodded. “That’s why we do everything for her,” Niall told her.

Jordin found out that if she wanted to talk to someone in her sister’s room, she needed to stand on the same side of the bed as her mother. “Jahi doesn’t like being spoken about,” Niall said. “That makes her heart rate quicker.” Jahi is nervous and upset when others behave as if she is not. “She listens to all the conversations – she has no choice. I bet she could tell some secrets. ” She stroked Jahi’s hair. “Do you know this feeling when you sit still and think about something, you can imagine that you are in a completely different place? I always say: “Jahi, one day you will tell me everything you know and about all the places you’ve been to.”

Rachel Aviv became the full-time author of The New Yorker in 2013. She wrote, in particular, about criminal proceedings, psychiatry, education, foster care and homelessness. She also taught courses at Columbia University Medical Center, New York City College, and Mount Sinai Medical School.


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