Alfie's, Charlie's and Ashya's cases all reveal a trend that it seems most people, except some in the United Kingdom, find profoundly disturbing.
Last Saturday, April 28, Alfie Evans died, twelve days short of his second birthday, at Alder Hey Children's Hospital in Liverpool. In his 720 days of extra-uterine life, he became the most well-known and prayed for infant in the world.
Alfie died ultimately because of the consequences of an undiagnosed neurodegenerative condition, but his death was expedited by a decision of Justice Anthony Hayden of the Family Division of the High Court of Justice of England and Wales. Hayden decreed on February 20, in agreement with the Alder Hey medical team, that "continued ventilator support is no longer in Alfie's best interest" and therefore would have to be removed.
Justice Hayden also decided that Alfie would not be permitted to be transported out of the country where his life could be sustained, other forms of treatment could be attempted, and perhaps a diagnosis actually made, because, he said, the journey would be burdensome, there were no prospects for treatment of the underlying condition, and therefore it was "irreconcilable with Alfie's best interest."
Alfie's best interest, in his judgment, was to die, sooner rather than later, without medical equipment, and just with palliative pain medication to lessen the suffering of the dying process.
After several unsuccessful appeals by Alfie's parents, Tom Evans and Kate James, to overturn Hayden's judgment, the ventilation was removed on April 23. To the embarrassment of the medical and judicial establishment that had previously seemed sure that Alfie would not be able to self respirate, the little boy began to breathe on his own and lived for five days, during which food and water were able to be given to him, lest he die of starvation or dehydration instead of asphyxiation. The eyes of the world were on Liverpool as, at any given time, eight to 30 police officers stood guard lest Tom and Kate, or anyone else, try to save Alfie's life by removing him from the hospital without Justice Hayden's permission.
Pope Francis got directly involved. On April 18, he met with Tom Evans in the Vatican. After their conversation, Pope Francis published tweets appealing that "everything necessary may be done in order to continue compassionately accompanying little Alfie Evans," and that "the suffering of his parents may be heard and ... their desire to seek new forms of treatment may be granted." He instructed the Vatican Secretariat of State to seek a diplomatic solution, which was facilitated by the Italian Government, which granted Alfie Italian citizenship (placing him simultaneously under another legal jurisdiction, one to which Justice Hayden later refused to give any weight). And he arranged for Dr. Mariella Enoc, President of Bambino Gesù ("Baby Jesus") Hospital in the Vatican, to fly to Liverpool in order to intervene with the doctors to try to bring Alfie to Rome on a medical military helicopter that had similarly been arranged.
None of these appeals -- and the many others that came from throughout the world -- mattered. Justice Hayden, who had cited Pope Francis in his February 20 decision with regard to how we are not morally obliged to use extraordinary means, therapeutic obstinacy or "overzealous treatment," showed himself extraordinarily and zealously obstinate in refusing any and all overtures, as contrary to Alfie's "best interest." No pope, president, parents, person or multitude could shake Hayden's conviction that he, and Alden Hey doctors, knew better than each and all.
After Alfie's death, Cardinal Pietro Parolin, Pope Francis' Secretary of State, summed up the "enormous sadness" of Pope Francis and millions across the world. "In the face of openly manifested availability, repeatedly and with great commitment of resources -- doctors from our hospital Bambino Gesù went to Liverpool three times -- there was the refusal to allow Alfie to be brought to Italy," he said in an interview with Crux. "It's incomprehensible. I cannot understand the logic. Or maybe there is [a logic], and it's a terrible one."
The terrible logic that the Holy See's top diplomat was hesitant even to whisper would seem to be that of state mandated euthanasia of those whose lives were deemed unworthy of living. In his decision, Judge Hayden didn't cite Alfie's pain or even possible pain due to future treatment as the legal ground for his decision, because he conceded that none of the doctors knew whether Alfie could experience pain at all. What he cited was Alfie's brain damage and the doctors' determination that there were no prospects that treatment would work. That was the ultimate reason he gave Alfie a death sentence by omission.
Alfie's case wasn't unique. Last July 28, Charlie Gard died just short of his first birthday at Great Ormond Street Hospital in London after the Hospital and the High Court refused his parents' request to transport him to New York for experimental treatment. Four years ago there was the infamous case of Ashya King, the five-year old boy whose parents wanted him to receive proton therapy treatment in Prague rather than conventional radiation and chemotherapy at Southampton General Hospital. They removed him from the hospital without telling the medical team and boarded a ferry for France. An international manhunt commenced. Brett and Naghemeh King were caught in Malaga, placed under arrest, kept in prison for a day and then returned to the United Kingdom. The High Court decided, thankfully, to allow the proton therapy in the Czech Republic. And it worked. Ashya, now 8, is cancer free.
Alfie's, Charlie's and Ashya's cases all reveal a trend that it seems most people, except some in the United Kingdom, find profoundly disturbing. It's the bulldozing of the rights of parents with regard to their children. In most jurisdictions throughout the world and in international law, parents decide what is in the best interests of their children. Laws exist for those situations when parents are obviously negligent, abusive or in irreconcilable disagreement. In the UK, however, laws governing situations of when parents are not on the same page are now being used for situations when parents are in disagreement not with each other but with doctors. Who decides among parents, doctors and judges? The judges have decided that ... the judges decide.
It's excruciating enough when parents see their children suffering and spending their infancy in hospitals. It's all the more painful -- not to mention unnatural and unethical -- when judges determine like despots that parents cannot do everything possible to save their child's life, or have to face police at the hospital and arrests on foreign soil for simply trying. Everyone recognizes that in national health care systems like in the UK, tough decisions need to be made about where medical resources will be allocated; but when it's not going to cost a penny to the system, as in Alfie's situation, the fact that parents are not allowed to make decisions they believe to be in their child's best interest is profoundly disturbing. Bioethics has long recognized the problem with "paternalism," the idea that "doctor knows best," not only because doctors can obviously occasionally be wrong, but also because it fails to recognize the need for the consent of the patient, something that flows from human dignity. What is happening in Britain is paternalism on steroids.
Closely associated with this is a problem of class. Many in England have commented that if we were dealing with the son of another Kate -- Kate Middleton -- and a High Court were deciding about the life or death of Prince George or Louis in a situation similar to Alfie, Charlie, Ashya, a High Court Justice would be far humbler in arrogating to himself the quasi-divine power over life and death.
The biggest bioethical issue, however, has to do with the aforementioned euthanasia, which is an act or omission that, of itself or by intention, causes death in order to eliminate suffering (Catechism of the Catholic Church, 2277). In Alfie's case we clearly have an omission that manifestly intended to provoke his death. Alfie was eventually going to die, just like all of us. When death is imminent, sometimes treatments can be given that we know will speed up the dying process, like giving higher doses of morphine to treat pain in someone terminally ill, but this is ethical only insofar as long as patients are given non-lethal doses and the intention is to treat the pain and not hasten death. In Alfie's case, however, breathing equipment was removed with the explicit intention to precipitate death. A minor crisis happened when Alfie didn't die; it was clearly intended, and not just anticipated, that he would die once the ventilators were removed. Euthanasia by omission is still euthanasia -- and this trampling of human life and dignity must concern us all.
Alfie's life on earth is now over. Since he was baptized, we are certain he is now embraced by God. But we should pray for Tom and Kate, who have experienced not just the death of their beloved son but a legal trauma that no parent ought ever to endure. And let's work to make sure that what happened to Alfie and Charlie happens no more.
Father Roger J. Landry is a priest of the Diocese of Fall River, Massachusetts, who works for the Holy See’s Permanent Observer Mission to the United Nations.
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