LONDON, England — Despite his parents’ protests that he showed “signs of life,” a four-month old boy who was severely brain damaged was legally declared dead and has been removed from a ventilator in the U.K.
Midrar Ali was disconnected from his ventilator sometime after judges agreed with doctors this month that the boy’s brain stem was dead. But the criteria used in the U.K. case is controversial, and “brain stem death” is not accepted for a diagnosis of death in many parts of the world.
A Catholic bioethicist says Ali’s case deserves careful medical and ethical judgment, and warns that the U.K. has adopted a “problematic” approach to defining death and proper medical care for the severely brain damaged.
“Brain stem death does not necessarily equal death,” said Father Tadeusz Pacholczyk, Ph.D., a bioethicist and director of education at the National Catholic Bioethics Center.
“Britain has adopted an unorthodox and problematic approach whereby they try to classify somebody with irreversible brain stem damage as ‘dead’ even if other, higher centers of the brain manifest integrative functionality.”
“The medical profession outside of Britain does not widely share this perspective, and certainly the medical profession in the U.S. does not,” Fr. Pacholczyk, who holds a Ph.D in neuroscience from Yale University, told CNA Feb. 26.
In September 2019, newborn Midrar Ali suffered severe brain damage during birth, when complications involving his umbilical cord starved him of oxygen. He was treated at St. Mary’s Hospital in Manchester.
News that the boy was disconnected from his ventilator was reported by the BBC Feb. 26. His father called for an inquest and a coroner’s investigation, BBC News reports.
On Feb. 14 an appellate court rejected the legal appeal from the boy’s parents, 35-year-old Karwan Ali and Shokhan Namiq, 28. The court sided with a high court judge who in January ruled that the baby, Midrar, was “brain stem dead.” This meant that doctors could withdraw treatment.
Judges declared that from the court’s perspective, Ali had actually died Oct. 1, 14 days after he was born.
The boy’s father, 35-year-old Karwan Ali, said the judgment was “terrible.”
“They can’t be 100% sure he is dead. He’s still growing. His eyes move. I’ve seen them move,” he said, according to the U.K. newspaper The Guardian.
In December, Ali said the hospital had failed to convince the family of its position.
“We have evidence of him responding,” he said.
“No doctor, no biologist can keep a dead person alive for three months,” Ali said, according to BBC News. “The body does not work without the brain.”
“I’m a biologist, I know that. The body does not work without the brain,” he repeated.
Fr. Pacholczyk said there could be merit to the father’s claims.
“To the extent that these observations are a manifestation of upper brain coordinated functioning, the child cannot properly be declared ‘dead’ or ‘deceased’,” he said.
In January, high court Justice Nathalie Lieven had ruled that the boy’s parents did not have an arguable case and doctors could cease the use of mechanical respiration.
Sir Andrew McFarlane, the most senior family court judge in England and Wales, said that Midrar no longer had a recognizable brain and there was no other conclusion to be reached other than to withdraw life support.
“The factual and medical evidence before was more than sufficient to justify the findings,” McFarlane said.
Manchester University National Health Service Foundation said the boy’s organs were deteriorating. He had never breathed independently. The foundation said continuing treatment was undignified and said the boy should be allowed a “kind and dignified death.”
Lawyers for the foundation said three tests confirmed brain stem death.
Fr. Pacholczyk noted that the U.K. diagnostic focus on brain stem death differs from other medical standards around the world. He said “brain death, understood as the complete and irreversible loss of all integrated neurological function (including brain stem function) is a reliable way medical professionals can determine that a patient has died.”
The parents’ own attorney has noted that the diagnosis of death in the U.S., Canada, Australia and elsewhere is based on “whole brain death,” and not “brain stem death.”
The appellate court’s Feb. 14 ruling cited the testimony of a doctor which said the key point about the U.K. diagnosis criteria is that “no patient has ever regained consciousness or awareness following brain stem death” and that when the brain stem dies it is “impossible for a patient to breathe unassisted.”
Fr. Pacholczyk reflected on the standards of care in such cases.
“Brain-damaged individuals are deserving of full respect, and partake fully of human dignity, equally as individuals whose brains are not damaged,” he said. “They deserve to receive reasonable (‘proportionate’) treatments as much as anyone else.”
At the same time, it must be “carefully assessed” whether certain interventions were “extraordinary” in Midrar’s case. Catholic ethics does not require extraordinary medical care.
“The question of whether he eventually will, or maybe already has stabilized in his condition, such that only minor additional treatments beyond the ventilator will be required, will also be important to assess carefully,” Fr. Pacholyczyk said ahead of news that the boy’s ventilator was disconnected.
Fr. Pacholczyk also questioned the hospital’s stated focus on maintaining the boy’s “dignity.” The hospital “appears to be using discriminatory and judgmental language when it declares that continuing to treat Midrar is ‘undignified’,” he said.
“The first role of a hospital is not to be bargaining in ‘dignity assessments’ about a particular patient’s life, nor trying to pass subjective judgments regarding somebody's ‘quality of life,’ but instead to provide care for patients, and to assist in facilitating productive dialog among family, medical professionals and others so that reasonable interventions can be offered to patients,” Fr. Pacholczyk told CNA.
Catholic thought on end-of-life care and the medical diagnosis of death is summarized in a February 2015 National Catholic Bioethics Center document “Brain Death.”
In an Aug. 29, 2000 address to the International Congress of the Transplantation Society, Pope St. John Paul II stated that “the complete and irreversible cessation of all brain activity (in the cerebrum, cerebellum and brain stem) … if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology.”
Thus, these criteria can be used to arrive at moral certainty that death has occurred, the pope said.
This moral certainty is considered “the necessary and sufficient basis for an ethically correct course of action,” the bioethics center’s summary said.
The Catholic bioethics center noted that determining death by these neurological criteria typically involves bedside testing to assess absence of response or reflexes, apnea testing to assess the absence of the ability to breath, and “possible confirmatory tests to further assess the absence of brain activity (for example, an EEG) or the absence of blood flow to the brain.”
Similarly, the U.S. bishops’ Ethical and Religious Directives for Catholic Health Care Services indicate that “the determination of death should be made by the physician or competent medical authority in accordance with responsible and commonly accepted scientific criteria.”
In a 2008 statement on brain death, the Pontifical Academy of Sciences stated that “brain death … ‘is’ death,” and that “something essential distinguishes brain death from all other types of severe brain dysfunction that encompass alterations of consciousness (for example, coma, vegetative state, and minimally conscious state).”
“If the criteria for brain death are not met, the barrier between life and death is not crossed, no matter how severe and irreversible a brain injury may be,” the academy added.
The Pontifical Academy of Sciences said that after brain death “the ventilator and not the individual, artificially maintains the appearance of vitality of the body.”
“Thus, in a condition of brain death, the so-called life of the parts of the body is ‘artificial life’ and not natural life,” the academy continued. “In essence, an artificial instrument has become the principal cause of such a non-natural ‘life’. In this way, death is camouflaged or masked by the use of the artificial instrument.”