QUESTION OF ETHICS

The life and death of Alfie Evans highlights the gap between the US and Europe on right to life

A baby boy named Alfie Evans died early this morning at the Alder Hey Children’s Hospital in Liverpool, England, in the pediatric intensive care unit that had been his home for the last 18 months. The life he lived for close to 24 months was mercilessly short, yet full of meaning. He didn’t know it, but he was at the center of a heart-wrenching debate about who should have final authority over children’s medical care: Parents, or the state?

Evans was born on May 9, 2016, the healthy child of two young parents, Tom Evans and Kate James. But as early as July 2016, Alfie’s health began to deteriorate. He was brought into the pediatric unit at Alder Hey in December 2016, where, over the course of a year, he suffered seizures, bi-lateral pneumonia, and cardiac complications that put him in a coma by January 2018.

Alfie’s doctors decided that continuing to keep the boy on ventilatory support was not in his best interest, concluding that he had an untreatable, progressive neuro-degenerative disease of unknown origin. Typically, in the UK, doctors in a similar position use private mediation (pdf) to agree upon a course of action with family members. But Alfie’s parents did not accept the doctors’ conclusion, arguing that the hospital had rushed to judgment. In later court hearings, they said they felt the hospital had “given up” on Alfie. And so the hospital turned to the family division of the UK’s High Court for a ruling.

Justice Anthony Hayden ruled in favor of the hospital in February 2018, saying that while it was “entirely right that every reasonable option should be explored for Alfie,” continuing to keep him on life support “compromises Alfie’s future dignity and fails to respect his autonomy.” The family then filed an appeal request before the Supreme Court of the United Kingdom, which was denied in March 2018. After having exhausted all legal options in the UK, the Evans took their case to the European Court of Human Rights, where their appeal was ruled inadmissible.

On Monday (April 23), the doctors at Alder Hey’s took Alfie off life support, against his parents’ wishes and in keeping with the court ruling. Most expected that he would not be able to keep breathing on his own. Defying expectations, he did. He survived several hours without assistance, after which doctors began giving him oxygen and hydration to help him breathe.

Doctor Judith Gross, who examined Alfie, had anticipated this possibility, telling judge Hayden (pdf), “even if Alfie is able to sustain respiration in the short term, on discontinuing ventilation, his respiratory effort will not sustain life.” But the fact that Alfie defied medical expectations further galvanized those who see in him a religious miracle and a symbol of the perseverance of life.

And yet, at 2:30 AM British time this morning (April 28), Alfie Evans died.

Alfie Evans and Christianity

The case of Alfie Evans has resonated with Catholic and Christian communities around the world. They see in his case a fundamental conflict between the actions of the British legal system and their religious belief in both the right to life and the right of parents to determine a child’s medical care. Some religious activists have banded together in support of the Evans family, calling themselves “Alfie’s Army,” and regularly protest outside the hospital where Alfie is being treated.

In response to the outcry from the Catholic community, the Italian government offered young Alfie citizenship, arranging for him to travel to the Bambino Gesu hospital in Italy. Even Pope Francis, who met with Tom Evans in Rome earlier this month, has weighed in on the case.

Pope Francis also tweeted out his sadness in response to the news of Evans’ death:

But the swelling of support for Alfie has not changed the British legal system’s mind. On Tuesday (April 24), justice Hayden ruled one final time that the family could not send Alfie to Italy for treatment. Moving Alfie, he said, would only make him more vulnerable to an infection and other dangers, for an outcome that would certainly not help him live any longer.

Who has final say over an infant’s medical care?

Alfie Evans is not the first baby whose medical condition sparked similar debates. Last year, Charlie Gard, a terminally ill British baby, died in July 2017 a day after the British High Court ruled that his life support could be withdrawn. Charlie’s case had attracted the attention of world leaders from Pope Francis to US president Donald Trump.

Extreme medical cases like Alfie Evans and Charlie Gard illustrate the moral dilemma of end-of-life care for sick children. It’s easy to understand why the parents of sick children would cling to hope; as long as their children are alive, they believe, there’s still a chance they might recover. But the British legal system takes the view that, in some cases, keeping children artificially alive only prolongs their suffering.

For outside observers, whether one sides with the parents or the state often falls along national and cultural fault lines. American conservatives are up in arms about Alfie, and many other Americans may well feel the same way. David French recently wrote in the conservative National Review that, because of the “fundamentally religious element to America’s founding,” the legal system would not consider intervening to determine the course of Alfie’s medical care, which would be left up to his family. He argues that Americans innately respect parents’ rights and liberties above the state’s: “Raised against the backdrop of American liberty, there are millions of Americans who understand this reality almost instinctively, without knowing an ounce of constitutional law,” he writes. “Their very spirit rebels against Great Britain’s actions.”

But European legal and political systems are based on the primacy of the state’s authority in extreme situations like a dispute over a child’s end-of-life medical care. That’s partly because European laws are informed by human rights standards laid down in the United Nations Convention on the Rights of the Child, which all European states are party to but the United States is not, as well as other European treaties like the European Convention on Human Rights.

“In Europe, disputes over children’s medical care, including end-of-life medical care, may result in a limitation of parental authority, justified by the protection of the child’s rights and best interests, which includes the right to have one’s dignity and physical integrity protected,” Ton Liefaard, who holds the UNICEF chair in children’s rights at Leiden Law School in The Netherlands, told Quartz.

Europeans themselves, meanwhile, are often divided along religious fault lines. British neonatal ethicist Dominic Wilson offers a view into the thinking behind secular support for the British legal system’s decision, explaining that the goal is not to end Alfie’s life but to provide him with palliative care. “Palliative care is not euthanasia,” he writes in a blog post. “It is about providing ‘intensive caring’ rather than intensive medical care. It does not end the child’s life. Rather, it supports the child, and the child’s family, for as long or as short as they remain with us.”

Whether one sides with the law or the rights of parents in this case, it’s impossible not to feel compassion for Alfie’s parents. Writing about Alfie’s father, Tom, in his ruling, justice Hayden laid out his understanding of the issue. “His core dilemma, from which he struggles to escape, is that whilst he recognizes and understands fully that the weight of the evidence spells out the futility of Alfie’s situation he is, as a father, unable to relinquish hope,” Hayden wrote. No parent could blame him.

This reporting is part of a series supported by a grant from the Bernard van Leer Foundation. The author’s views are not necessarily those of the Bernard van Leer Foundation.

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