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How does it feel to die?

UNITED STATES (OBSERVATORY) –¬†Shortly before tonsillectomy, Jahi McMath, a thirteen-year-old African-American girl from Oakland, California, asked her doctor, Frederick Rosen, a question about his qualifications.

“How many times have you done this operation?”

“Hundreds of times,” answered Rosen.

“Did you sleep well last night?”

“Yes, it’s good,” was the answer.

Jahi Nyla Winkfield’s mother encouraged her daughter to continue asking questions. “It’s your body,” she said. “Do not be shy to ask this person about everything that interests you.”

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

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

Working in Home Depot Niall said: “Nobody listened to us, and I can not prove anything, but I feel that if Jahi was a white girl, we would receive more help and attention.” Crying, she telephoned her mother, Sandra Chatham, a nurse with thirty years of experience who worked at the Kaiser Permanente surgical clinic in Auckland.

Sandra, a good-natured and calm woman, who likes to wear a flower in her hair, came to the hospital at ten o’clock. Seeing that Jahi had filled a two hundred-centimeter basin with blood, she said to the nurse: “It’s not normal. Do you really think this is the norm? “In her notes, the nurse wrote that she” several times per shift “notified the doctors on duty about the bleeding Jahi. Another nurse wrote that the doctors “knew about this post-operative hemorrhage,” but said that “no immediate intervention of ENTs or surgeons is required.” Rosen has already gone home. In his medical records, he pointed out that Jahi’s right carotid artery was located abnormally close to the throat – an inborn condition potentially capable of increasing the risk of hemorrhage. But the nurses responsible for her recovery did not seem to know about this, but because they did not mention it in their notes. (Rosen’s lawyer said that he could not spread the state of Jahi, the hospital also could not comment on the law on the confidentiality of medical information, but the lawyer said that the staff were satisfied with the care of Jahi.)

In the intensive care unit there were twenty-three beds for three wards. There was a doctor on the other end of Jahi’s room, and Sandra asked him: “Why do not you follow my granddaughter’s condition?” The doctor instructed the nurse on duty not to change Jahi’s hospital shirt in order to estimate the amount of blood lost and splatter her in the nose of Afrin. Sandra, who leads the Kaiser Permanente seminars on the “four habits pattern”, the method of improving the ability to empathize with patients, was, she said, surprised that the doctor never bothered to introduce himself. “He frowned and crossed his arms over his chest,” she said. “He thought we were some kind of mud.”

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

Two days later the doctors stated the death of Jahi’s brain. She breathed with the help of ventilation, but the pupils did not react to light, there was no vomiting reflex, and her eyes remained motionless despite stimuli. She was briefly disconnected from the ventilator, but the lungs were filled with carbon dioxide. The electroencephalogram did not record the activity of brain waves.

Like all other states, California lives on the “Uniform Legislative Act of Death” of the 1981 version, which states that anyone who has undergone an “irreversible cessation of all brain functions, including the trunk, is deemed dead.” The state law obliges hospitals to provide relatives with some time for parting before disconnecting the ventilator, but remember at the same time about “the needs of other patients and people in need of urgent help.”

At the meeting with Rosen and other medical workers, the family demanded an apology. According to the report of the social worker who attended the meeting, Rosen “expressed sympathy”, but this did not suit the girl’s relatives. “Get out,” Marvin called him. “All this was fundamentally wrong!” And Sandra said that Jahi did not “get the treatment that she deserved.”

Over the next few days, the social worker repeatedly urged the Jahi family to plan to disconnect her from the ventilator. She also recommended considering the possibility of donating her organs. “We refused,” Marvin said. “Because we wanted to know first what exactly happened to her.” The family asked them to give them Jahi’s medical card, but since she was still in the hospital, doctors could not do this. 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 a rapid disconnection of Jahi from the ventilator is contrary to the family’s interests. A week later, Williams called Sandra for a woman’s conversation. According to Sandra, the doctor told her that if Jahi was to be restrained on the phone, she would not look good at the funeral, “Well, you know, like all of us.” (Sam Williams with this description of the conversation does not agree.)

“Who are we,” Sandra thought, “we are African Americans?” I felt terribly humiliated, yes, many black children die in Oakland, and people arrange a funeral for them, but that does not mean that we are all alike. Do you think we should get used to the fact that our children die, that for black people this is in the order of things? “She said:” At that moment, I lost all confidence.”

Niall’s younger brother, Omari Sealey, slept in an armchair next to Jahi’s hospital bed to make sure that no one would kill her. He said: “I just felt that in their eyes, her life is almost worthless. They seemed to be trying to drive us away. ” He, like the former baseball star of the University of California at San Diego, had many fans in social networks, and in “Instagram” and “Facebook” he announced that the hospital urged them to quickly disconnect Jahi from the ventilator. “They are trying to smuggle us into legitimate delirium,” he wrote. “Only God decides when it will end.” In the comments one of his friends wrote: “Just universal disrespect !!!! TO THE FUCK OF THIS HEALTH CARE SYSTEM !!! “Another said:” They want to see us either dead or in jail, just not alive. ”

A week after the operation, Celia called the lawyer for personal injury to Christopher Dolan and told him: “They want to kill my niece.” Dolan agreed to take this case on a no-cost basis, although he had no such experience. He was guided by the only vague feeling that a child with a beating heart can not be considered dead definitively. He wrote an order forbidding the continuation of unlawful actions: if doctors disconnect Jahi from artificial ventilation, they violate the civil rights of her and her family. Force pinned a corresponding note on Jahi’s bed and a pulse oximeter.

In his petition to the Supreme Court of the Alameda district, Dolan asked to invite Jahi an independent doctor for examination. He wrote about the conflict of interests of the hospital, because if her doctors are found guilty of abuse of office, they can “dramatically 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 sue, when the patient is still alive, there are no restrictions. In a separate petition, Dolan claimed that the hospital violated Niall’s right to express his religious beliefs. As a Christian, she believed that her daughter’s soul would be in the body as long as her heart was beating.

On December 19, ten days after the operation, David Durant, the first vice president and chief physician of the hospital, met with his family. They asked to leave Jahi on the ventilator before Christmas, hoping to reduce the brain tumor. Durant refused. They also asked to provide it with a probe for artificial feeding. Durant rejected this request. Later he wrote that the very idea that the procedure would help the girl to recover was “completely absurd” and will only support the “illusion that she is still alive”.

When they began to persist, Duran asked: “What do you not understand?” According to the mother, stepfather, grandmother, brother of Jahi and Dolan’s notes, Duran pounded on the table, saying: “She’s dead, dead, dead!” (Chief doctor himself assertion denies.)

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

The next day, Evelio Grillo, Supreme Court Justice of Alameda County, commissioned an independent expert, Paul Fischer, head of the neurology department at the Stanford University Children’s Hospital, to inspect Jahi. During the hearing, two hundred people marched in front of the hospital, holding placards in their hands saying: “Justice for Jahi!” And “Doctors can make mistakes!” About a quarter of the protesters were friends and neighbors of Naila. She lived a few minutes’ walk from her mother, and that one a few blocks from her own, who moved to East Auckland from Opelousas, Louisiana, at the height of the civil rights movement.

Fisher repeated the standard examination and tests for brain death and confirmed the hospital’s conclusion. He also conducted a radionuclide study of cerebral blood flow. “There is only an absolute emptiness, a white spot in that part of the head where the brain is,” he told Judge Grillo the next day. “Usually this place is black.” Grillo ruled that the hospital could turn off Jahi from the IVL in 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 completely outsiders who found out about this case from the media. Network Terri Schiavo Life & Hope – an organization founded by parents and brothers Terri Schiavo, who for fifteen years was in a vegetative state – offered to use their contacts to find a suitable clinic. Niall never thought about the question of the right to life. With regard to abortion, she was a supporter of choice. “I just wanted to get her out of there.” And Sandra said that she sometimes asks herself, “would we have to fight just as furiously, show the hospital more compassion?”

Nayla asked the children’s hospital to perform a tracheotomy, an operation that allows air from the ventilation to be pumped directly into the breathing tube – a safer way for Jahi to breathe when transported to a new hospital. The hospital’s medical ethics committee unanimously concluded that any intervention is inappropriate. “None of the possible goals of medicine – the preservation of life, the treatment of diseases, the restoration of functions, the alleviation of suffering – can not be achieved with the ventilation of the lungs and the artificial support of a dead patient,” they wrote. They said that doctors and nurses caring for Jahi have “tremendous moral suffering” and that satisfying the family’s requests will cause “serious questions about honesty and justice.”

Shortly before the expiration of the protective order of the court, Grillo extended it for eight days. Shortly thereafter, Dolan and hospital attorneys at the hospital reached the following agreement: the hospital would issue Jahi to the coroner of Alameda County, who would declare her dead. Then the family will incur “full and exclusive responsibility” for it.

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

Two days later, two nurses from the evacuation service by air transport entered the Jahi ward. A doctor from the children’s hospital disconnected her from the ventilator, and the nurses were connected to a portable device and put on a gurney. They took her to an ambulance car, without identification marks, standing at the entrance to the hospital. On that day, a game was played between the teams of San Francisco Forty Niners and Green Bay Packers, and Dolan hoped that this would distract the crowd of journalists near the hospital. Dolan did not tell anyone where Jahi was going – even to his family – because he was afraid that the hospital would find out about it and would foil the plan.

Niall was the only one of all family members allowed on board the aircraft, hired on the funds collected with the help of GoFundMe. She was horrified by the noise that her daughter’s portable respirator made, drowning out the seemingly engine of the plane. It was only after landing that she learned 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 this 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 the presence of breathing is equivalent to life.

Jahi was sent to St. Peter’s University Hospital in New Brunswick, New Jersey, which is administered by the Metachen Roman Catholic Diocese. Niall said that she had “no plan, no shelter – nothing.” With her, she had only one suitcase. “When it comes to my child, I’m turning into an animal,” she told me.

The Children’s Hospital hired Sam Singer, an expert in defending reputation in crisis situations, to work with the media that covered the case. “The atmosphere inside the hospital was like a siege,” Singer said. Two days after his departure, Jahi Singer (who is called “the best possible specialist”) gave an interview to a local newspaper: “I have never seen such reckless disregard for the truth.” At a press conference, he said that Dolan “created a fake. Very sad fake. That Jahi McMath is to some extent alive. This is not true. She died under all laws of the state of California. And this will be recognized by any system of spiritual beliefs that can only be imagined. ”

Experts in bioethics reacted to the decision of the family as disparagingly. In one of his articles for Newsday, Arthur Kaplan, the founding director of the Department of Medical Ethics at the University of New York, and probably the country’s best-known bioethics, wrote: “Maintaining her life with the IVL apparatus is a desecration of the body.” In an interview with CNN, he stated that “there is no likelihood that in this condition she will be able to stretch for a long time.” Answering the questions of the USA Today newspaper, he said: “Well, you can not feed the corpse”, and “it will start to decompose”. Professor of Medical Ethics at Cornell University Lawrence McCullough believed that no hospital should accept Jahi. “What are they thinking about at all?” He told a USA Today correspondent. “There is only one suitable description for all this: madness.”

Director of the Center for Bioethics at the Harvard Medical School, Robert Truog, said that he was concerned about the manner in which the incident was reported in the media. “I think that members of the bioethical community felt such a strong need to support the traditional understanding of brain death that they really treated the family with contempt, which made me feel terrible,” he told me. Truog believed that the social context of the family decision was ignored. Blacks are twice as likely as Whites to extend their lives 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 undesirable medical interventions such as amputations. Truog said: “I understand that when a doctor says that the person you own has died and does not look dead, it may seem that you are again denied due care because of the color of your skin.”

Until the 1960s, the only possible cause of death was cardiopulmonary insufficiency. The notion that death can be diagnosed in the brain arose only with the advent of modern ventilators with which manipulation was performed, known as “oxygen treatment”: while oxygen carrying blood reached the heart, it could continue to beat. In 1967, Henry Beecher, a prominent bioethicist at the Harvard Medical School, wrote to one of his colleagues: “It would be highly desirable for Harvard University to come to any conclusion about a new definition of death.” Throughout the earth, the number of “comatose patients supported by IVL machines has grown, and there are a number of problems that need to be addressed.”

Beecher established a committee, which included ten doctors, a lawyer, a historian and a theologian. In less than six months, they completed a report that was published in the Journal of the American Medical Association. The only quote quoted in the article belonged to the pope. They put forward the proposal that death should be considered irreversible processes of brain destruction, motivating it with the following reasons: in order to ease 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, the doctors performed the world’s first operation for transplanting the pancreas, liver, lungs, and heart. In an earlier version of the report, the second reason was stated more specifically: “There is a great need for the tissues and organs of hopeless patients in a state of coma, in order to restore the health of those who can still be saved.” (The proposal was reconsidered after the Dean of the Harvard Medical School announced a failed connotation.)

Over the next twelve years, 27 states have redefined the definition of death in order to conform to the conclusions reached by the members of the Harvard committee. Every year, thousands of lives were prolonged or saved, as now patients diagnosed with brain death – this form of death was eventually accepted by the United Kingdom, Canada, Australia and most European countries – could sacrifice their organs to others. Philosopher Peter Singer called it “a concept so desirable in its consequences that it is impossible to abandon it, and so shaky in its justifications 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 considered alive in one region could be declared dead in another – and in 1981 the Presidential Commission for the Study of Ethical Problems proposed a single definition and theory of death. In her report, which was approved by the American Medical Association, it was said that death is the moment when the body ceases to function as a “single whole”. Even if life persists in separate organs and cells, a person can no longer be considered alive, because in this case functioning organs are nothing more than a set of artificially supported subsystems doomed to destruction. “Usually the heart stops beating between two to ten days,” the report said.

The staff philosopher Daniel Wickler, a professor at Harvard University and the first specialist in corporate ethics at the World Health Organization, told me that the theory of death put forward by the commission was corroborated by the scientific facts she referred to. “It seemed to me that this was a clear lie, but why?” He said. “At that time, I did not see a single negative moment.” Wickler told the commission that it would be more logical to say that death comes at the moment of stopping the functioning of the big brain, that is, the center of consciousness, thoughts and feelings – the properties necessary for owning personal identity. His wording 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 meaning of death.” “I was put in a difficult position, and I did work in bad faith,” he told me. “I knew that all this smacked of perfidy, and created the appearance of many unknowns and went the way of the vague facts, so that no one could say:” Hey, your philosopher thinks this is nonsense. “That’s exactly what I thought, but in what you wrote you’ll never see anything like that.”