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This case led to a bioethical debate, which is still open, since her family refused the medical conclusion of brain death. They made countless efforts to keep her daughter, Jahi, alive using mechanical ventilation and other treatments.

The complex topics going through this case and going through our consciences are:


  1. 1. The Definition of Vital Support and Futile Care

Her parents considered these medical treatments to be a vital support, meanwhile her doctors considered this a futile treatment for “a death person”.

This case has prompted some commentator to debate over the futility of life support in these cases, because it would be considered as a “life support for a death” and a futile care therapy.


  1. Religious belief

The McMath family’s solicitor said: “There would have been no legal battle if Jahi had her tonsil surgery in New Jersey”, referring to a New Jersey state law that allows religious objection to the declaration of death based on neurological criteria.


3.Change of the Law on the Determination of Cerebral Death

Other perplexities were raised to include explanations on how the American law deals with brain death conditions and if Jahi’s case can change current laws and practices.


  1. Organ donation

The public uncertainties over the differences between “brain death” and “cardiac death” conditions raised during this case, led some clinicians to express concerns on how this case could influence the recovery of live organs from brain dead patients. This represents the largest source of supply in use.


Jahi’s history




9 December 2013

According to court documents Jahi Kelis McMath, a 13-year-old girl, is hospitalised into the paediatric unit of the “Benioff Children’s Hospital” in Oakland-California on 9 December 2013 for an adenotonsillectomy, uvulopalatopharyngoplasty and submucous resection of bilateral lower turbinate’s.

It is hoped that these surgeries would improve Jahi’s airflow during night time sleep, as she suffers from obstructive sleep apnoea.

Jahi appears to be very worried and does not want to undergo this surgery. Her mother, Latasha “Nailah” Winkfiled, persuades her to trust Dr. Rosen, the surgeon, telling her that he was an expert and had done this kind of operation many times.

The surgery lasts four hours and at about 7.00pm Jahi come out conscious from the operating theatre. The nurses give her an ice lolly when she is in the recovery room.

About an hour later, Jahi begins to cough up blood and a nurse gives the family a container to collect it. However, at 9.00pm the bleeding also spread to her nose.

Nailah calls her mother, Sandra, who has been a nurse for 30 years. When she arrives, the container was already filled with up to 200ml of blood. She immediately told the nurses that this didn’t look to be normal.

A nurse writes in her notes that the doctors on duty were “warned several times during the shift” that Jahi is bleeding.

Another nurse writes that the doctors were “aware of this post-operative bleeding” but tells her that “there will be no immediate intervention of the ENT team or Surgery”.

Dr. Rosen leaves the hospital for the day. In his medical records, he writes that Jahi’s right carotid artery appeared abnormally close to the pharynx. This is a congenital condition that could potentially increase the risk of haemorrhage. Though the nurses responsible for her recovery seem unaware of her conditions and don’t mention it in their notes.

Jahi’s grandmother, Sandra, sees a doctor in a opposite room asking why he is not visiting her granddaughter.

The doctor ignored her and instead tells a nurse not to change Jahi’s clothes so that he could observe how much blood she has lost and to spray the “Afrin” in her nose.

At 12:30 am., Sandra sees on Jahi’s monitor that her oxygen saturation levels dropped down to seventy-nine percent.

She screams to the medical staff and several nurses and doctors rush to Jahi and start working to intubate her.

Sandra heard a doctor say, “Oh, shit, her heart stopped.”

It takes two and a half hours to restore Jahi’s heartbeat and stabilise her breathing.

Sandra says that when she saw dr. Rosen the morning after, he looked like he was crying.


So, between the 9 December 2013, the same day of surgery, and the 10, Jahi suffers from a massive loss of blood and has subsequent cardiac arrest.

According to the medical team who were caring her, the loss of blood circulation caused the death of the whole brain.


On 12 December 2013, the the medical team declare her brain was death.

The family is informed that she is legally dead and that consequently any life support treatment will be withdrawn.

The family refuses to accept the medical declaration of death according to neurological criteria stating that Jahi is not dead. They start a legal proceeding in an attempt to request the hospital to continue life treatments.


On 20 December 2013, Jahi’s family files a lawsuit in the High Court of Alameda County, asking the court that the Oakland Children’s Hospital keeps Jahi in life support treatments.


On 23 December 2013, in a preliminary court hearing, Judge Evelio Grillo appoints Paul Graham Fisher, M.D., as head of the Child Neurology unit at Stanford University School of Medicine to provide an independent medical opinion regarding the declaration of her brain death condition.

Jahi’s family also asks dr. Paul A. Byrne [1], M.D., to make a separate medical report.

Dr. Fisher examines Jahi and confirms the diagnosis of brain death, reporting that there is no activity on her electroencephalogram (EEG), no blood stream into her brain and that she is unable to breathe on her own when removed from mechanical ventilation. These evidences are standard clinical signs of a totally brain death condition.


On 24 December 2013, Mr. Justice Grillo concludes that Jahi is legally dead, basing his decision on the medical evidences showed by the medical team at the Oakland Children’s Hospital and the independent opinion of the expert dr. Paul Fisher.

Grillo tells the family: “This was very, very heart-breaking for you, no one anywhere in the world would want this to happen to anyone else”.

Mr. justice requests the hospital to continue mechanical ventilation until 30 December 2013.

The hospital solicitor, mr. Doug Straus says he would like to try to stop intravenous fluids and to remove Jahi from the breathing machine on 30 December by 5 pm. Though the medical team would like to negotiate with the family the option to remove Jahi from ventilation even earlier, if the family agrees.

On 30December 2013, the family appeals the decision to the second district of the California Court of Appeals and the US Court for the Northern District of California, requesting the hospital to continue life support treatments until other ways can be arranged by the family to guarantee the right care of the girl.

Jahi’s mother claims that applying the Uniform Determination of Death Act [2]in this case is in violation of constitutional rights and privacy and, since Jahi’s heart is still beating, she can still be considered alive.

Mr. Byrne declares in court that he saw Jahi moving at the hospital and so he considers her still alive.

The hospital states that it would be immoral and “grotesque” to require the hospital and its medical team to provide further medical treatments to a corpse and claims that Byrne is “a crusader with an ideological bias”. It also complains that he is not a neurologist and he is not licensed to practice in the state of California.

The hospital declares that the movements are due to Lazarus’s signs [3]and that they are not rare in cases of brain death patients.

After the hospital and Jahi’s family engaged in scheduled talks, an agreement was reached.

The agreement reached allows the hospital to call a transfer team to enter the facility and relocate Jahi body. The full medical responsibility and the responsibility for the relocation will fall, from now on, solely on Jahi’s mother.

Jahi’s ventilation equipment must be removed and connected into the transport team’s equipment along with those of the other devices. The girl’s body must pass from the hospital gurney to a new one. Even her medical records, medications and a status report must be delivered back, and the hospital must interrupt any relations with her.

The family’s request of a tracheotomy and a feeding tube installed by the hospital is denied by the court.



On 3 January 2014, the coroner’s office issues an official death certificate for Jahi with the date of death of 12 December 2013.

The death certificate is incomplete and as the cause of death is under investigation.

Therefore, an autopsy is required.


On 5 January 2014, the Children’s Hospital releases Jahi’s body to the coroner of the county of Alameda.

After receiving custody of the body from the paediatric hospital, the coroner releases the body to her mother’s custody. The mother she is warned of all related risks for a possible cardiac arrest during Jahi’s transfer. The transfer team is made up of 2 simple nurses.

“A short time ago, Jahi McMath’s body was released by the Children’s Hospital & Research Centre in Oakland to the coroner”, mr. Durand writes in a statement. “The coroner has then released her body to the custody of the mother, Latasha Winkfield, as per court order, for an unknown destination. Our hearts are with the family while suffering from this sad situation and we wish them a conclusion in peace.”

The family Solicitor Mr. Christopher Dolan along with Uncle Sealey, do not release any details about her care during the late-night press conference. They say that Jahi will be connected to a feeding tube and a tracheotomy will be applied by Monday morning.

Her mother, Nailah Winkfield, is by her side, as they are the “highly skilled workers of the intensive care unit “, Dolan says:

“This family knows that the odds are all against them. They also know that they don’t need anything less than a miracle. However, what this family only wanted was another opportunity. This is not just for girl named Jahi McMath. This case also applies to every parent being able to have the right to make a choice for their own child and not an hospital that choose for them” he concludes.

Dolan also refuses to indicate where Jahi has been moved and says that his silence is intended to protect Jahi’s privacy and the privacy of other the other patients on the facility.

The Court documents show that “Life & Hope of Terry Schiavo” network worked hard to move her in a protected facility in the State of New York, and that Medway Air Ambulance based in Georgia would have provided the transportation.

The court documents say that the approximate cost of Jahi transportation was around $ 32,000; Jahi McMath’s website at gofundme.com reports that $ 47,842 has been collected so far in just 10 days.

Only during the flight, the family realise that they are going to New Jersey, the only other state along New York, to allow Orthodox Jews to be accommodated by law. Some of them believe, citing the Talmud, that the presence of breath means presence of life.


Jahi arrives at the hospital after more than 3 weeks of not receiving proper nutrition.

In March 2014, the “Life & Hope of Terry Schiavo” network, recognise the McMath family effort with an annual award. The award recognises “the unconditional love they have for Jahi and their courage as they continue to fight for their daughter against the overwhelming adversities”.

Jahi’s mother claims to be honoured to receive the award claiming for her daughter to be “still asleep” and making it clear that she does not use the phrase “brain dead” when referring to her.


Meanwhile, Jahi’s condition begins to stabilise. Her skin becomes more elastic, her limbs and face swell and her blood pressure stabilise.

In their progress notes, the medical team simply write “Status quo”.

No rehabilitation facility will accept her as a patient, therefore she will stay in the hospital’s intensive care unit with her treatments covered by the Medicaid insurance.

Nailah says that the cost of care is around one hundred and fifty thousand dollars a week.

According to the 1991 New Jersey Statute on Death, insurance providers can’t deny coverage due to “personal religious beliefs regarding the application of neurological criteria of death declaration.”

Alan Weisbard, the executive chief of the bioethics commission who drafted the law, says: “I thought that our position could have been of humble, rather than certainty”.

Previously, Weisbard assisted the legal assistant of the President for the Death and, like Wikler, felt uneasy regarding the result.

He says: “I think that people who have conceived deep and conceptual thinking about the brain death condition are people with a high IQ, who tremendously evaluate their cognitive abilities – people who believe that the ability to think, plan and act in the world is what makes life meaningful. Though there is a different tradition that points much more towards the body”.

Weisbard, a religious Jew, says that he doesn’t think that “minority communities should be forced into a definition of death that violates their belief structures and practices and their primary senses.”

In June 2014, some media report that Jahi was transferred to the Saint Peter’s University Hospital in New Brunswick, New Jersey, in the paediatric intensive care unit where patients receive assistance 24/7.

According to the website, the Saint Peter’s University Hospital is part of a non-profit healthcare system funded by the Roman Catholic diocese of Metuchen, NJ.

Philip Hartman, a spokesman for the San Peter’s Healthcare System, says he is unable to confirm the presence of Jahi, as his hospital’s policy restrict the release of patient names to the public.

Jahi’s family’s solicitor, Christopher Dolan, is also firmly convinced that he too can’t reveal where Jahi is located: “No, I cannot confirm anything in relation to where Jahi is,” he says.

However, Dolan, reassures that Jahi’s conditions improved to the point that the family is considering moving her out from the hospital.

Dolan declared: “I would say this is an event I see potentially possible”. “Thanks to Jahi’s improvement, she may need a lower level of support now”.

Still according to media, Jahi was in hospital until August 2014, after which she is transferred to an apartment still in New Jersey.


In July 2014Jahi has her first period.


At the end of August 2014, Jahi is discharged from the hospital but still diagnosed with a “brain death” condition. She moves to an apartment rented by her parents.

The nurses, paid by Medicaid insurance, aid 24/7.

Every four hours, Nailah helps them to turn her daughter’s body.

One of Jahi’s closest nurses writes a note on the wall in her bedroom: “During your turn, interact with her” she writes. “She can hear you! Speak clearly, slowly, slowly”. She adds: “Nobody knows whether she is able to comprehend, but only your voice or your comforting touch could help”.

Not long after the family moved, two detectives and a patrol officer show up at the apartment. The Franklin Township Police Detective has received an anonymous warning that there was a corpse in the house.

Nailah led the investigators into Jahi’s room and shows them her ventilator.

The policemen concluded that there is no criminal activity and they left. Though, the nurse on duty is shocked and leave the house.

Nailah is harassed for months by e-mail and Facebook messages that accuse her of child abuse or exploitation of her daughter for money. A stranger launched a petition on Change.org to “prevent New Jersey state from paying for the care of corpses with taxpayer’s’ money”; the petition says that Nailah bought a “Michael Kors” bag and an expensive wine. This accusation was made based on Instagram pictures.

Nailah’s solicitor, Dolan, says: “They think she’s just a black lady who sucks in public resources.”


In September 2014, a month after Jahi was discharged, the International Brain Research Foundation, a group of neuroscience experts supporting innovative research, economically contribute for Jahi to have an MRI scan at the “Rutgers New Jersey Medical School”.

The MRI scan is made on 26 September 2014.

Dr. Calixto Machado, president of the Cuban Society of Clinical Neurophysiology, flies to New Jersey to analyse the scan.

Machado published over two hundred articles on conscience disorders and organizes a symposium every four year that attracts the world’s leading brain death experts.

He says: “Everyone was talking about Jahi -Jahi this, Jahi that … – but nobody knew her neurological picture”.

The fact that Jahi started menstruation – a process triggered by the hypothalamus, near the front of the brain – suggests that not all of her neurological functions has stopped.

Dolan sits next to Machado in the hospital while looking at two computer screens showing images of Jahi’s head and the top of her spine.

In rare events in which brain-dead patients are sustained by a ventilator, neurologists have reported a phenomenon called “respiratory brain”: the brain liquefies.

Machado says that if Jahi’s original diagnosis is correct, and if she has not had a cerebral blood flown for nine months, he expects to see a small tissue structure in her cranial cavity with only fluid and disorganized membranes.

During the scans, Machado observes that Jahi’s brain stem is almost destroyed.

The nerve fibres that connect the left and right hemispheres of the brain are barely recognizable.

But large areas of her brain, which trigger consciousness, language and voluntary movements, are structurally intact.

Dolan shouts: “She has a brain!”


Machado also performed a test that measures the interaction between sympathetic and parasympathetic nervous systems, a relationship that regulates the states of excitation and rest.

He used three experimental conditions, one of which he calls “The mother speaks to the patient”.

Nailah stayed closed by her daughter without touching her.

“Hey, Jahi, I’m here” she says. “I love you. Everyone is so proud of you”.

Machado notes that Jahi’s heart rate changes in response to her mother’s voice.

“This cannot be found in a brain-dead patient” he wrote.


On October 2014, three days after the scans, Dolan presents a report from Machado to the Alameda County Coroner’s office and asks him to rescind Jahi’s death certificate, so that she can return to California to seek treatment from Nailah.

The coroner and the county public health department rejected the request: “Any opportunity to overturn the Court’s statement that Jahi McMath is brain dead has long since expired” their lawyers wrote.

Paul Fisher, MD, an independent expert appointed by the court, who confirmed Jahi’s diagnosis of brain death in December 2013, states that the new evidences presented don’t refute his previous determination of brain death.

The Oakland Children’s Hospital continues to sustain that the original diagnosis of brain death is correct and that the videos don’t meet the diagnostic criteria for brain death condition.

At the end of 2014, Dr. Alan Shewmon [4], who has just retired as head of the neurology department at Olive View-U.C.L.A. Medical Center, read Machado’s report and begin to wonder if Jahi has a condition, for the first time proposed by the Brazilian neurologist C. G. Coimbra, called “ischemic penumbra”. Coimbra hypothesises that this brain state can lead to a misdiagnosis of brain death in patients whose cerebral blood flow has decreased enough to not be detected by standard tests. If blood still flows into parts of the brain, however slowly, then in theory some degree of recovery should be possible.

Shewmon flies to New Jersey and visits Jahi in her flat.

He pulls a desk chair by her bed and, with a notebook in his hand, observed her for six consecutive hours.

Jahi did not respond to his instructions to move her limbs, a fact that Shewmon didn’t find particularly revealing.

He analysed the videos that Nailah recorded and which suggested, according to her, that Jahi was in a minimally conscious state. This is a condition in which patients are either partially or intermittently aware of themselves and the environment around them.

He writes that her condition “creates a particular challenge to be refuted or verified because the probability that Jahi is in a “reactive” state during a random exam is very minimal”.

After Shewmon left, Nailah records more videos by following Shewmon’s instructions of not touching her daughter during filming and to preferably starting the video outside Jahi’s room.

At the end, Shewmon analyses 49 videos containing 193 commands and 668 body movements.

He wrote that movements occur “faster after the command than what would have been expected if they were random events” and that “there is a very strong correspondence between the part of the body required to move and the part of the body that actually moves. This cannot reasonably be explained by chance”.

He also noted that movements “don’t compare to any kind of reflection” and that, in a video, Jahi seemed to show a complex level of linguistic comprehension”.

Nailah asks her: “When you get angry with someone, what finger you should move?” and two seconds later, Jahi flexes her left middle finger, then bent her pinkie finger. “Not that” Nailah says. Four seconds later, Jahi moves again the middle finger.



In March 2015, Jahi’s family files a lawsuit for negligence against the Children’s Hospital in Oakland and the surgeon who performed Jahi’s intervention, Dr. Frederick Rosen, stating they are ready to discuss that Jahi is not dead as a part of the hearing.

McMath’s family, together with Bruce Brusavich, the solicitor who followed the lawsuit for negligence, declared that they were prepared to claim that Jahi is not brain dead.


The prosecution claims that the surgeon advised a high-risk surgery instead of using a CPAP (continuous positive airway pressure) machine, which is usually preferable, especially for children.

It also claims that the surgeon did notice an abnormal artery in Jahi’s throat and that he did not inform the nurses that this would have put the girl at an increased risk of serious bleeding.


Indeed, a nurse provided the family with a suction device to remove her blood, causing the starting of the strong bleeding meanwhile another nurse suggested to not use it because it would have removed blood clots which were essential for her life.

Jahi bled from 7:30pm to 12:35am of the next day and lost more than 2 litres of blood.

Dr. Rosen was never present during these events.

After several hours, another doctor arrived and stated: “[swearing], her heart has stopped” and began the cardiac massage manoeuvres for about 30 minutes.

The cardiac arrest lasted more than two hours, leaving Jahi severely brain damaged and dependent on life support.

The family also claims that the hospital manager told them “she had suffered significant brain damage” and that he then placed her on the list of organ donors as they were arranging to end her life support.

There was also a chaotic emotional scene at the hospital where he banged his fists on the table and said “What do you not understand? She’s dead, dead, dead.”

The hospital insists that dead people don’t have the possibility to take legal actions.

“The prosecutors are preserving Jahi’s body from her natural post-mortem course”, the hospital’s solicitor wrote. “It would be against to the public policy to consider doctors accountable for the unnecessary medical interventions on a dead person”.

After this, the hospital appoints its own medical experts team for further opinions.

Thomas Nakagawa, who wrote the 2011 guidelines for pediatric brain death, states that the only criteria accepted for brain death are those established by the guidelines themselves.

MRI scans, heart rate analysis, movement videos and menstruations are not relevant to these criteria.

Sanford Schneider, a professor of pediatrics at the University of California, Irvine, used to refer to Jahi as a “dead body” and tells the court that “she cannot respond to verbal commands because she doesn’t have a brain mechanism to hear the sound”. This conclusion was based on a test that measured Jahi’s brain wave activity in response to several noises.

Schneider wrote: “There is absolutely no medical chance that J McMath has recovered or, sooner or later, will recover from death.”


Dolan says he is going to make a request to Alex Padilla, the Secretary of State of California, asking him to rescind the death certificate so that the family can return to Oakland and receive assistance for their daughter. If this would not work, he will then sue the State to bring Jahi back home.

The case of medical negligence is independent of the legal effort to have Jahi declared alive in California. The first trial can go on regardless of the success of this last effort.

Note: if the hospital and the medical team are considered responsible for Jahi’s injuries, the amount of the damage compensation would be drastically higher if she is considered alive as the total will also include the costs incurred for treatments after the declaration of death.

Dolan shows video recordings of Jahi and: the statements of Dr. Machado, the witnesses of three New Jersey consultant who has examined her and the advice of Dr. Shewmon, who concludes that Jahi met the requirements of brain death at the time of his diagnosis in 2013, but not anymore.

He wrote: “Over time, her brain has recovered the ability to generate electrical activity, in parallel with the recovery of the ability to respond to commands”.

He describes her as “an extremely disabled but very alive girl”.

Jahi’s family believes that she is capable of a wider range of thoughts than she can express, an idea that Shewmon has also considered: “Given the evidence of intermittent reactivity”, he wrote in a statement addressing the court, “we all should be willing to remain agnostic about her inner state of mind during periods of non-responsiveness, rather than automatically equating it with unconsciousness”.

Progress in neuroimaging led some clinicians to consider the possibility that a significant number of patients deemed to be in a vegetative state – those who don’t demonstrate a clear awareness of their environment and do not do intentional movements – are misdiagnosed; they can be periodically conscious and capable of a certain level of communication.

Dolan also provides the signed statements of Dr. Charles J. Prestigiacomo, director of cerebrovascular and endovascular neurosurgery at the University Hospital of Newark and president of the neurological surgery department of Rutgers, who claims that Jahi is not brain dead.

Prestigiacomo wrote in his statement, after reviewing the tests conducted at the university hospital, the following: “The brain structure shown in the MRI scan is not consistent with a nine-month dead brain patient’s MRI scan,”. Furthermore, he adds that Jahi has a “very significant brain injury but she does not meet the criteria for brain death patients.”


In October 2015, a judge rules that Jahi’s family can provide proofs to determine whether she is dead or alive. If dead, the case will be a cause for death caused by a medical intervention with a $250,000 damage compensation limit meanwhile, if alive, the damage could potentially reach many millions of dollars.


This will be a significant sentence: “… even though a California court has already declared Jahi dead (in 2013), this can now be re-discussed. On the other hand, this is a decision only upon the made request. If the first request for change (expected at the beginning of November) can produce sufficient evidences, then Jahi has yet to offer further evidences to support them. However, it seems that the request for change is very well detailed”, says T.M. Pope, bioethicist and professor of law.



On 24 October 2015Jahi turns 15 and a series of photos posted on his Facebook page show that her body apparently has not yet deteriorated as it usually happens in a situation of a brain death patience.

In November 2015, in the paper script presented to the court, these points were presented:

  1. Since the Certificate of Death was issued, Jahi has been examined by a physician licensed to practice in the State of California who is an experienced paediatric neurologist with triple Board Certifications in Paediatrics, Neurology (with special competence in Child Neurology), and Electroencephalography. The physician has a minor specialty in “brain death” and had published and lectured extensively on the topic, both nationally and internationally. This physician has personally examined Jahi and has reviewed several medical records and studies performed on her, including an MRI/MRA done at Rutgers University Medical Centre on 26 September 2014. This medical consultant also examined 22 videotapes of Jahi responding to specific requests to respond and move…
  2. The female period involves hormonal interaction between the hypothalamus (part of the brain), the pituitary gland, and the ovaries. Other aspects of pubertal development also require hypothalamic function. Corpses do not menstruate. Neither do corpses undergo sexual maturation. There is no precedent in the medical literature of a brain-dead body developing the onset of menarche and thelarche.
  3. Based upon the paediatric neurologist’s evaluation of Jahi, Jahi no longer fulfils the standard “brain death” criteria due to her ability to specifically respond to stimuli. The distinction between random cord-originating movements and true responses to command is extremely important for the diagnosis of “brain death” patience. Jahi is capable of intermittently respond intentionally to a verbal command.
  4. In the opinion of the paediatric neurologist who has examined Jahi, having spent hours with her and having reviewed numerous videotapes of her, she has proven that Jahi has not followed the trajectory of imminent total body deterioration and collapsed that was predicted back in December 2013, based on the brain death diagnosis of. Her brain is alive in the neuropathological sense and it is not necrotic. Currently, Jahi does not fulfil California’s statutory definition of death, which requires the irreversible absence of all brain function. This is because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.


In January 2016, according to the family’s solicitor: “Jahi’s family pleads a federal lawsuit for obtaining a revocation of the death certificate, after they failed an attempt to do so at as tate level”.

The current doctor of Jahi, Dr. Alieta Eck, makes a statement to the court request affirming that she believes the teenager is alive. This after having treated her for months. “While Jahi McMath has suffered a severe and significant brain injury and looks like a person who has suffered severe brain trauma with signs and features of serious brain damage, Jahi McMath is not dead,” says Eck. “She is showing signs of brain functions”

In October 2016, Jahi’s family publishes a video in which it can be seen a machine to measure the breathing, with the mother encouraging Jahi to breathe without mechanical assistance. According to the evidences, she takes fourteen or fifteen breaths in a minute. If this results to be true, Jahi is not dead. This evidence means that she is able to hear and at least her brainstem has a continuous function.


In court, after viewing 49 videos of Jahi, Dr. Alan Shewmon declares that she is technically alive. This was recorded in a court document made on 29 June 2017, stating that the girl performs movement commands and shows other evidence of life.

He testified: “The observed movements can be impulses of the spinal cord but not all. There is a very strong correspondence between the stimulated part of the body and the part of the body that she can move. This can’t reasonably be explained by chance. Considering that several tests have shown these videos to be fully genuine, these images should make us raise all our head. Jahi McMath is a living, severely disabled, young woman who currently doesn’t meet either the standard diagnostic guidelines for brain death or the statutory definition of California death. At least, in the matter of life against death, the convincing evidences [in video] of the ability to respond to commands and the puberty justifies the benefit of the doubt”.

The full testimony of Shewmon is available here:


The judge therefore is reluctant to remain at the conclusions made in 2013.

In a potential advance regarding the decision, he determines that Nailah could try to prove that Jahi is alive in a medical malpractice case and a jury will be called to decide.

June 22, 2018 – Jahi dies

Jahi’s life support was removed on 22 June 2018, after four and a half years of her initial diagnosis of brain death.


Her second, and at the same time first, death certificate – released in New Jersey – defines her cause of death as bleeding due to liver failure and notes that Jahi suffered from an anoxic brain injury for 4 years.

Nailah declares to be “devastated by the loss of her daughter who had shown enormous strength and courage”.

Furthermore, she declares: “Jahi forced the world to rethink about the topic of brain death. The University of Harvard recently held a symposium in which the case of Jahi was discussed in detail. Doctors and researchers presented papers and lectures agreeing that Jahi was not brain dead. Instead they presented proof of a new level of consciousness. ”

Nailah also states: “Every day I was focused on Jahi and I was going around her. I enjoyed seeing her every morning and kissing her for the goodnight every night. The hole on my heart left by her passing away is enormous. My daughter died on 22 June 2018 and not on 12 December 2013. The doctors who were treating her at the time of her death declared she died because of complications from liver failure. Nowhere there is a reference to brain death. They recognise a previous brain injury, but don’t try to call it brain dead. The Oakland Children’s Hospital and the doctors who were the cause of my daughter injures, allowed her to bleed so much that it caused a traumatic brain injury. They wanted to call my daughter brain dead because it served their purpose in trying to end her life, so she could sweep their way under the carpet. I knew that Jahi had not died in December 2013. I’m her mother and I know my daughter, and I was right. Jahi McMath had not died cerebrally or any other kind of death. She was a child who deserved to be looked after and protected, not called a dead body. When she was finally started to be treated as a human being, she then started to improve her condition. As I told the medical team at the Children’s Hospital in Oakland, you all messed it up, you need to make a step back and let God have some time to heal my daughter. Once away from the Children’s Hospital and in the hands of faith-loving people that cared after her, she improved. In December 2013, Dr. Heidi Flori of the Children’s Hospital said that Jahi’s body was decomposing and nothing could slow or reverse his impending death. She said that no heroic measure could change the fact that Jahi was every day dying. She didn’t know me or my daughter. Jahi is a heroine and she fought hard. I fought with her. The doctors who cared and did the things we asked for saved her life. People who haven’t gone through this will never understand it. I can say that I have done all for the good of my daughter. Until she was fighting for living, I was fighting all my life for her. During the past 4 years, Jahi hasn’t struggled. She lived peacefully with me and my family in New Jersey. She just recently got ill, and we went to the hospital. She has PTSD (Post Traumatic Stress Disorder) from the hospital, so this has reported her back in time. After an exploratory surgery, Jahi began to show symptoms of suffering. She had bleeding that they were not able to localise. Therefore, they planned another surgery. I told Jahi that: “if you’re a tired girl, and you’re tired of all this, and you want to be with God, I’ll give you my permission to go to God”. It was only then that I felt Jahi slipping away. What people need to know is that I loved her enough to let her go. If she had suffered before, or had been tired and wanted to go before, then I would have let her go.  I wasn’t exploited by anyone, I was fully aware of what people were saying, about my daughter being died in the brain.

I knew the opposite, and I made the decisions I took on my own, like her mother, knowing that my daughter had a very serious brain injury. The only thing I know is that she wasn’t dead. Over the past 4 years my daughter and I have spent a lot of time together. She could hear me and could respond to my voice by using her fingers to signal “yes” or “no”.

I knew when she had good days, bad days, if she felt pain, and anything else. Our communication may not be like that of other people, but we have somehow communicated. Every time I entered the room, her heart rate increased.

All of this doesn’t happen with a dead person. My daughter knew I was there and that I loved her as well as I knew she was there and that she loved me too. This was verified by a well-known neurologist, dr. Alan Shewmon, UCLA, who wrote an article saying that Jahi was able to understand and respond to my voice and that she was not brain dead”.

When they told her that the paediatric hospital spokesperson, San Singer, said her emotions had been exploited by her attorney Chris Dolan, Nailah responded: “Saying I was exploited you are saying that I didn’t understand what was happening to my daughter and that I could not make decisions for myself. This is a racist conclusion that has begun and keeps going on. I’m not stupid, I was right. I’ll probably know more about medicine after these four and a half years compared to most medical students. Dolan did only what I asked him to do and I’m glad I did. He didn’t tell me what to do, I told him what to do as he was my solicitor. He did everything for free.

I don’t regret having fought for my daughter’s life. This journey has been long and difficult. I left a good paid job at the Home Depot, I cashed all my savings and sold my house and most of my belongings to stay in New Jersey as a family. I was so stressed that sometimes I wondered if I could make it. I could hear my daughter saying she loved me and didn’t want me to be sad. I thought, how can I be sorry for myself when my daughter is there to take care of what she’s been dealing with. People can say anything they want about me, but what no one will ever say is that I gave up on my daughter. I never gave up. Nobody can say why you didn’t do this or that, I did everything every human could do. I would do it all over again if I had to choose. I don’t regret any of the decisions I made for my daughter. We have spent more than 4 years together. She has just turned 17. I am grateful to the nurses and the medical team who took care of Jahi. Although angry with the doctors who betrayed and treated her as if she was not worthy of their care, I realised that there are also good doctors who took care of her and the life of disabled people, not only for organ donation or to make save money to insurance companies. I thank all the people who have prayed for us during this time and I ask you to continue to pray for me and my daughter.  Your prayers helped me to keep going and helped Jahi survive and improve. Prayer and faith are what kept us both on the way. I have fought over the last 4 years to allow my daughter to come home, so she could be looked after and loved by her family and friends in her hometown.We have been deprived of this right and have lived in exile in the State of New Jersey, which has human laws that allow people to exercise their faith and reject the legal reasoning behind brain death that was designed to allow organs to be removed from people who still have pulsating hearts and living bodies. It’s tragic that only now, after her death, I can bring my daughter home.”

When asked what she hopes people have learned from the Jahi story, Nailah replied:
“I hope people have learned that they have the right to defend their loved ones and refuse the race to end their lives. I hope they have learned not to disconnect their people just because some doctors think it’s the best thing to do. The best thing for us was to fight and as a result Jahi had another four years knowing that her family loved and valued her, and that she fought for her. “


Omari Sealey, Jahi’s uncle, who fought for her survival said: “Jahi may have moved away from his body but her name, soul and spirit will be with us and will live forever”.


Christopher Dolan, the solicitor of Jahi and Nailah, who provided free of charge representation over the last 4 years said: “It is a tragedy that the State of California has refused to recognise that Jahi was a living, sentient human being and didn’t reverse her previous, wrong, death certificate so that she could not return home. The legal steps to prove she was alive were prolonged by doctors who, instead, wanted her dead. The fight for Jahi is not over yet. Despite the terrible criticisms, I have no regrets in representing this family. I am honoured to have been serving them as their legal representative. Justice in fact, is not a popularity contest. At no time this has been as important as now. The case of Jahi led to the development of a body of laws proclaiming that parents have the right to challenge a hasty diagnosis of brain death. These diagnoses are often made before the brain has had the opportunity to recover from the severe trauma. In this way, money can be saved, and organs collected with no interferences. Doctors should not have the right to play God and decide who is able to live and who to die solely based on their ideas of what is the best or what the best use of resources is. Life is precious, and this is a slippery slope.If we allow doctors to determine which quality of life deserves to be preserved and who should or should not die, then we’re creating a scenario in which, for instance, they can decide to abort children with severe birth defects or end the lives of people they consider as marginal as people with severe brain damage, more the elderly or those who have dementia and are unable to live independently or who do not know what is happening in their own world. The more our society becomes old, the more we must protect it against the culture of death using the committee to protect the vulnerable and the sanctity of life.”

He also added that “now that Jahi is dead, the fight to convict the negligent doctors who allowed Jahi to suffer severe brain damage will continue in the Supreme Court of Alameda through an act of illicit death”.

Moreover, he stated that he intends to continue to fight on behalf of Jahi through the federal civil rights lawsuit that was filed in the Northern District of California and try to reverse his hastily prepared death certificate along with her death date of 22 June 2018″.


The family is asking for peace and for opportunity to mourn the loss of their beloved Jahi while they organise the burial of her body in California.




Bioethicists denigrated the family’s decision.

In an editorial on Newsday, Arthur Caplan, the founding director of the NYU Medical Ethics Division and perhaps the country’s most famous bioethicist, wrote: “Keeping her on a ventilator is equivalent to the desecrating of a body”.

He told to the CNN: “There is no chance that she will be able to survive very long”.

In an interview released to USA Today, he said: “You can’t really feed a corpse” and “She is about to start decomposing”.

Laurence McCullough, Professor of ethical medic at Cornell, criticised every hospital which could have hospitalised Jahi. “What can they think?” told to USA Today. “There’s only one word for this: madness”.


Robert Truog, director of the Centre for Bioethics at Harvard Medical School, declared that he was annoyed by the tone of the media coverage. He said: “I think the bioethics community felt the need to support the traditional understanding of brain death to the point that they were really treating this family with contempt. I felt guilty about that”.

Truog thought that the social context of the family decision was ignored.

“African-Americans have double of the probability respect to whites to demand their lives to be prolonged as much as possible, even in the case of irreversible coma, because of fears of being disregarded by the society. A large group of research papers has shown that black patients are less likely to get appropriate medications and surgeries than white ones, regardless of the level of insurance or education. Furthermore, they are more likely to receive unwanted medical interventions, such as amputations”.

Truog also added: “When a doctor says that the loved one is dead, and the loved one doesn’t seem to be dead, I understand that they might feel that, once again, they won’t receive the right treatments because of the colour of their skin”.

Troug, during an academic speech on brain death, described it as a catastrophic brain damage rather than proper death. A transplant specialist stood up and said: “You should be ashamed of yourself. What you are doing is immoral: putting doubts in people’s minds on a practice that is saving countless lives”.

Truog later declare, in an interview with The New Yorker, the following: “I thought about it for a long time. To support public confidence in the scientific business, I believe that in the long run the medical profession will always be better off if we speak honestly and sincerely about what we know. I don’t think there is anything morally wrong with the fact that we take organs from these people, even if there is no scientific reason to believe they are dead. I think it’s a morally virtuous thing to do and we should make it easier. We are doing the right thing for the wrong reasons”.


Jahi’s case sparked what Thaddeus Pope, a bioethicist at the Mitchell Hamline University School of Law, define as “shadow effect of Jahi McMath” where an increase number of families, many of them from ethnic or racial minorities, go to court to prevent hospitals to disconnect their loved ones from ventilation. A similar debate took place in 2015 when an Ethiopian university student, Aden Hailu, was declared brain dead in a Nevada hospital after an exploratory surgery for stomach pain. A district court rejected his father’s request to keep him on a ventilation, but the Nevada Supreme Court rejected the lower court’s decision and decided that an expert evidence was required to determine whether standard brain death tests “adequately measure all the functions of the whole brain”.

The hearing never took place as Hailu’s heart stopped beating earlier.

Pope is also worried that these disputes, which often attract media attention, can cause fewer people to register as organ donors, a practice whose social acceptability depends on the idea that patients are dead before their vital organs are removed.

After visiting Jahi with Bobbi Schindler, Wesley J Smith, a Senior Fellow at the Discovery Institute Centre on Human Exceptionalism and known for his criticism regarding assisted suicide and utilitarian bioethics, wrote in an article in September 2017 which said: “I hope that several important neurologists, without any profit in the situation, can come forward and volunteer to examine Jahi, – and not just for a couple of days, but for a long period of time – to thoroughly test her brain and body functions to determine if she is actually responding to requested stimuli. In the event she miss even one brain death requirement, the death certificate of Jahi in California should be revoked, letting the chips to fall wherever they can”.

Regarding the relatively limited bioethics coverage of the McMath’s case, Smith noted: “I am amazed at the fact that the medical and bioethics communities generally show such a marked lack of curiosity about Jahi’s situation … Maybe it is just a case of “experts” who don’t want to know more – because if Jahi isn’t dead, it would become of an epochal legal, social, medical and scientific impact. But then what? Jahi deserves justice. If she is alive, she is a full and equivalent member of the moral community”.

The definition of “Brain Death”


Until the 1960s, cardio-respiratory failure was the only way to die.

The idea that death could be diagnosed in the brain didn’t emerge until after the advent of the modern ventilator, allowing what was known at the time as “oxygen treatment”: as long as the oxygen-carrying blood reached the heart, this could continue to beat. In 1967, Henry Beecher, a renowned bioethicist from Harvard Medical School, wrote the following to a colleague: “It would be very desirable for a group from Harvard University to come to some subtle conclusion about a new definition of death”.

Patients permanently in a coma, maintained by mechanical ventilation, were “increasing in number in the world and there are a number of problems that should be addressed”.


Beecher created a committee of people who already knew each other: ten doctors, a lawyer, an historian, and a theologist. In less than six months they completed a report, which was published in the Journal of the American Medical Association.

The only quotation in this article was the Pope’s speech.

They proposed that the irreversible destruction of the brain was defined as death by giving two main reasons: to alleviate the burden of families and hospitals, which provided unnecessary care to patients who would never recover, and to face the fact that “outdated criteria for the definition of death can cause controversies in getting organs for transplantation”, a topic that developed rapidly; in the previous five years, doctors had performed for the first time in the world the transplant of pancreas,  liver,  lung, and a heart.

In a previous draft, the second reason was more directly addressed: “There is a great need for tissues and organs from patients in a desperate coma to restore the health of those that are still recoverable”. (The phrase was revised after the Harvard principal wrote that “the connotation of this statement is unfortunate”).

After this, twenty-seven states over the next twelve years have rewritten their definitions of death to conform to the Harvard committee’s findings. Thousands of lives have been prolonged or saved each year because patients declared brain-dead – a form of death eventually adopted by the United Kingdom, Canada, Australia and most of Europe – were now eligible to donate their organs.


The philosopher Peter Singer described it as “such a desirable concept in its consequences that it is unthinkable to surrender, and so trembling on its foundations that it can’t be sustained”.

The new death was “an ethical choice disguised as a medical fact” he wrote.


Though legal ambiguities remained – people considered alive in one state of the country could be declared dead in another – and, in 1981, the Commission of the President for the study of ethical problems proposed a uniform definition and a theory of death.

Its report, approved by the American Medical Association, said that death is the moment when the body stops to function as an “integrated whole”. Even if life continues in the individual organs and cells, the person is no longer alive, because functioning organs are simply a collection of artificially maintained subsystems that will inevitably disintegrate.

“The heart usually stops beating in two or ten days”, says the report.


One of the commission staff, the philosopher Daniel Wikler, a Harvard professor and the first staff ethicist of the World Health Organization, in an interview with The New Yorker said that he didn’t think that the commission’s death theory was supported by the scientific facts mentioned: “I thought it was obviously false, but then?” He said. “At the time I did not see a downside”.

Wikler told the committee that it would have been more logical to say that the death occurres when the brain – the centre for consciousness, the thoughts, feelings and the essential properties to have a personal identity – was destroyed. Its formulation would have guaranteed a much larger population of patients, including those who could breathe alone, but dead. Despite the terms, Wikler released the third chapter of the report: “Understanding the ‘meaning’ of death”.

“I was put in an uncomfortable position, and I tried” he said. “I knew there was an air of bad faith about it. I made it seem like there were a lot of deep unknowns and we went in the direction of confusion, so that no one could say: “Hey, your philosopher says it’s nonsense”. “This is what I thought, but you would never know from what I wrote”.


Brain death’s notion was rejected by some Native Americans, Muslims and Evangelical Protestants, as well as Orthodox Jews.

Japan also looked at the concept with scepticism, due in part to the mistrust of the medical authority.

The first heart transplant in Japan, in 1968, became a national scandal: it unclear if the donor was irrecoverable or if the recipient (who died shortly after the transplant) needed a new heart. Later, the country never adopted a law that equates brain death with the death of a human being.

Important Notes:


[1] Dr. Paul A. Byrne

Dr. Paul A. Byrne is a certified Neonatologist and Paediatrician. He is the founder of the neonatal intensive care unit at the SSM Cardinal Glennon Children’s Medical Centre in St. Louis, MO. He is a clinical professor of Paediatrics at the University of Toledo, College of Medicine. He is a member of the American Academy of Paediatrics and Fellowship of Catholic Scholars.

Dr. Byrne is former President of the Catholic Medical Association (USA), former clinical professor of Paediatrics at St. Louis University in St. Louis, MO and Creighton University in Omaha, NE. He was Professor of Paediatrics and President of the Department of Paediatrics at the Faculty of Medicine of the Oral Roberts University and Chairman of the Ethics Committee of the Centre of Research and Medicine of the City of Faith in Tulsa, OK.

He is the author and producer of the film “Continuum of Life” and author of the books “Life, Life Support and Death”, “Beyond Brain Death” and “Is ‘Brain Death’ True Death?”

Dr. Byrne presented testimony on “life problems” in nine state legislatures starting in 1967.

He participated in the British Broadcasting Corporation’s documentary “Are the Donors Really Dead?”

He has written articles against euthanasia, abortion and “brain death” in medical journals, legal and secular literature.

Dr. P.A. Byrne is part of a group of former members of the Pontifical Academy for Life who decided to give life to the John Paul II Academy for Human Life and the Family (JAHLF).

Dr Byrne visited Alfie Evans in December 2017 and signed the letter from the “John Paul II for life and family” academy addressed to the Pope and Queen Elizabeth on April 26, 2018. Dr Byrne is co-inventor of the first neonatal ventilators and, questioned in this regard by LifeSiteNews, said: “A ventilator moves the air into the trachea and into the larger airways. It supports breathing only in a living person. (…) Breathing takes place only when life is present”.

Dr. Byrne added: “The ventilator for breathing is analogous to a feeding tube. These tubes support life only in a living person. However, if there is a need to prolong its use beyond two weeks, the endotracheal tube should be replaced with a tracheotomy, which has not been practiced on Alfie, an aid that would have allowed it to be managed outside of a paediatric intensive care unit. Removing the ventilation from Alfie would mean inflicting him a death sentence”.


[2] Uniform Determination of Death Act (UDDA)


With a Preface Note.

Approved by the American Medical Association on October 19, 1980.

Approved by the American Bar Association on February 10, 1981, 


Preface Note

This law provides complete bases for determining death in all situations. It is based on a ten-year evolution of the statutory language on this subject.

The first statute was approved in Kansas in 1970.

In 1972, Professor Alexander Capron and dr. Leon Kass further refined the concept in “A Statutory Definition of Standards for the Determination of Human Death: An Evaluation and a Proposal”, 121 Pa. L. Rev 87.

In 1975, the Law and Medicine Commission for the American Bar Association (ABA) drafted a Model Definition of Death Act.

In 1978, the National Conference of Commissioners for Uniform State Law (NCCUSL) completed the Uniform Brain Death Act.

It was based on the previous work of the ABA.

In 1979, the American Medical Association (AMA) created its Model Determination of Death status.

In the meantime, around twenty-five state legislatures have adopted statutes based on one or other of the existing models.


The interest in these statutes stems from modern advances in life-saving technology.

A person can be artificially sustained for breathing and circulation after all brain functions cease irreversibly.

The medical profession has also developed techniques to determine the loss of brain function while cardiorespiratory support is given.

At the same time, the definition of common death can’t ensure the recognition of these techniques.

The common law standard for the determination of death is the cessation of all vital functions, traditionally demonstrated by an “absence of spontaneous respiratory and cardiac functions”.

There is therefore a potential disparity between current and accepted biomedical practice and the common law. The proliferation of model acts and uniform acts, while indicating a legislative need, can also be a source of confusion. All existing acts have the same main objective of extension B of the common law to include new techniques for determining death. Without any essential disagreements on politics, the associations that drafted the statutes met to find a common language.

This law contains that common language and is the result of an agreement between ABA, AMA and NCCUSL.


Part (1) encodes the existing common law base for determining total death-failure of the cardiorespiratory system.

Part (2) extends the common law to include new procedures for determining death based on the irreversible loss of all brain functions.

The vast majority of cases will continue to be determined on the basis of part (1).

When the artificial means of support preclude a decision based on part (1), the law recognizes that death can be determined by alternative procedures.

Under part (2), the entire brain must cease to function irreversibly.

The “whole brain” includes the brainstem, as well as the neocortex. The concept of “whole brain” distinguishes the determination of death under the Act from “neocortical death” or “persistent vegetative state”. These are not considered valid medical or legal grounds for determining death. Moreover, this law does not deal with biological testaments, death with dignity, euthanasia, of rules on death certificates, maintaining vital support beyond brain death in the case of pregnant women or organ donors and corpse protection. These topics are left to other laws.


This law is silent on acceptable diagnostic tests and medical procedures. Sets the general legal standard to determine death, but not the medical criteria for doing so.

The medical profession remains free to formulate acceptable medical practices and to use new biomedical knowledge, diagnostic tests and equipment.


It is not necessary for the law to specifically address the responsibility of those making determinations. No person authorized by law to determine death, such as making a determination in accordance with the law, should, or will be, responsible for damages in any civil action or may be the subject of judicial proceedings or in any criminal proceedings for his acts or other acts based on that determination. No person acting in good faith, relying on a determination of death, should, or will be liable for damages in any civil action or may be subject to judicial proceedings in any criminal proceedings for his or her actions. It is not necessary to address these problems in the text of this law.


Furthermore, the time of death is not specifically addressed. In those cases where the time of death affects legal rights, this law establishes the basis for determining death. The time of death is a fact that must be determined with all the others in each individual case and can be resolved, in case of doubt, with a testimony of experts before the competent court.


Finally, since this law should apply to all situations, it shouldn’t be combined with the Uniform Law on Anatomical Donation so that its application is not limited to cases of organ donation.  

Uniform Determination of Death Law

1.[Determination of death]. An individual who has undergone irreversible (1) cessation of circulatory and respiratory functions, or (2) the irreversible cessation of all functions of the entire brain, including the brainstem, is dead.

A determination of death must be made in accordance with accepted medical standards.


  1. [Uniformity of construction and application]. The present law must be applied and interpreted to achieve its general purpose of rendering the law uniform with respect to the object of the present law among the States that implement it.


  1. [Short title]. This law can be cited as the Uniform Determination Law of Death.

To read the full text in English:



Actually, states that have ratified the law are: Alabama, Alaska, Arkansas, California, Colorado, Delaware, District of Columbia, Georgia, Idaho, Indiana, Kansas, Maine, Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska , Nevada, New Hampshire, New Jersey, New Mexico, New York, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, South Dakota, Tennessee, US Virgin Islands, Utah, Vermont, West Virginia, Wisconsin, Wyoming


[3] Lazarus’ sign

Lazarus’ sign or Lazarus’ reflex is a reflex movement in patients with brain death or brain injury, which causes them to briefly raise their arms to make them fall crossed over their chest (in a position similar to that of some Egyptian mummies). The phenomenon takes its name from the biblical figure Lazarus of Bethany, whom Jesus raised from the dead in the Gospel of John.


[4] Dr. Alan Shewmon

Dr. Shewmon diagnosed brain death at about two hundred people.

He is measured, formal and precise.

He went to the medical School in 1971 and later specialized in neurology because he wanted to understand the relationship between the mind and the brain. For the next fifteen years, he believed and defended the notion of brain death, but in the early 90’s he began to feel increasingly troubled by the concept.

When he engaged in what he called “Socratic conversations” with his colleagues, he saw that few doctors could safely say why the destruction of an organ was synonymous with death. Usually, they ended up saying that these patients were still living biological organisms but had lost the abilities that made them human.

He thought that the wording seemed too much like the idea of ​​“mental death”, which the Nazis embraced after the publication, in 1920, of a widely read medical and legal text entitled “Permit to destroy life unworthy of living”.

In 1992, Shewmon was asked to make a consultation in the case of a fourteen years old boy who, after falling from the hood of a moving car, had been declared brain death.

The boy’s family was religious and insisted that he would remain on ventilation. His doctors, confident that his heart would soon fail, adhered to his parents’ request.

It survived for sixty-three days and puberty began. “This case flew in the face of everything I had been taught about the universality and imminence of somatic death in brain death,” Shewmon later wrote.

“He forced me to rethink everything.” Shewmon began studying similar cases and found 175 people, many of whom were children or adolescents, who had been living for months or years after being declared legally dead.

The longest survivor was a boy who was declared dead after contracting meningitis when he was four years old. His heart beat for another twenty years, during which he grew proportionally and recovered from small wounds and infections, even though he didn’t have an identifiable brain structure and the outside of his brain had calcified.

In 1997, in a document titled “Recovery from ‘Brain Death’: The Apology of a Neurologist”, Shewmon disregarded his previous opinions.

He acknowledged that “dissidents from the concept of” brain death “are generally ignored condescendingly as simple zealots, religious fanatics or fanatics of life,” and announced that they would join their ranks. Shewmon’s research on what he calls “chronic survival” after brain death helped to hold a new president’s council on bioethics in 2008 and review the definition of death. The council report referred to Shewmon’s research thirty-eight times. Although he eventually reaffirmed the validity of brain death, he abandoned the biological and philosophical justification presented by the 1981 Presidential Commission – that a functioning brain was necessary for the organism to function as an “integral whole”. Instead, the report now says that the destruction of the brain is equivalent to death because it means that a human being is no longer able to “engage in trade with the surrounding world”, which is “what an organism” does “and what distinguishes every organism from non-living things”

In a personal note attached to the end of the report, the prime minister, Edmund Pellegrino, expressed regret for the lack of empirical precision. He wrote that attempts to articulate the boundaries of death “end up 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”.


*Photograph by Doug DuBois for The New Yorker