At the centre of the Alfie Evans controversy, which has absorbed the world’s attention this week, is a human tragedy almost beyond words. The 23-month-old boy seems to be close to death: his ventilator has been switched off as part of an end-of-life care plan. The Court of Appeal ruled yesterday that Alfie cannot be taken abroad for treatment – the latest of half-a-dozen legal decisions which have gone against the parents. They are now considering their options.
The family’s story has become an international cause because, to many, it seems a major injustice. Alder Hey, the Liverpool hospital which has cared for Alfie since he fell seriously ill in December 2016, has decided that it is in Alfie’s “best interests” to switch off the ventilator. His parents argue that he should be given another chance – and a hospital in Rome, the Bambino Gesù, has offered to treat him.
Pope Francis has repeatedly signalled his support for the parents’ point of view. So has the Italian state, which granted Alfie citizenship to try to secure his move to Rome – and even provided a plane. The presidents of Poland and of the European Parliament have joined the cause. But these extraordinary gestures, and a wave of public support (the parents have 380,000 supporters on Facebook alone), have not changed the official mind.
The Catholic hierarchy has itself been divided. On Wednesday last week, a few hours after Pope Francis met Alfie’s father in Rome and offered his support, a statement from the English bishops appeared to side with the hospital.
For some observers, the desperate situation sums up much of what is wrong with modern Britain. They see a health system which is too quick to choose death as a solution, courts which treat parental rights as non-existent, and bishops too timid to take a stand. Of course, that is not how the hospital, the judges or the bishops see it. But to grasp both sides of this understandably emotive argument, we have to go back to the beginning.
Alfie Evans was born on May 9, 2016, to Tom Evans, now 21, and Kate James, 20. At the end of 2016, Alfie started having seizures, and since then he has been cared for by Alder Hey hospital. He is suffering from an undiagnosed brain condition. In a court judgment in February this year, Mr Justice Hayden referred to the opinions of doctors not only from Alder Hey, but also from two separate experts at Great Ormond Street, from two Munich hospitals, and from the senior clinical team at Bambino Gesù itself. “All agreed,” Mr Justice Hayden wrote, that the “degeneration” of Alfie’s brain “is both catastrophic and untreatable”. Last Friday, the Supreme Court rejected Alfie’s parents’ appeal for further treatment, saying: “The unanimous opinion of the doctors who have examined him and the scans of his brain is that almost all of his brain has been destroyed.” No recovery is possible, according to the doctors.
Alfie’s parents have disputed this. In February Tom Evans told the High Court that Alfie could be helped by further treatment. “I can accept how he is now,” Evans said. “What I can’t accept is that there is no potential of him waking up.” This week he argued that there had been a “misdiagnosis”.
The parents suggested a course of action: Alfie could be flown to Bambino Gesù in Rome, which was eager to care for the boy. The hospital’s president, Mariella Enoc, told Vatican News last week that the hospital cannot cure him – but they can keep him alive and carry on trying to identify his still-unknown illness. But Alder Hey argued that the end should be accepted – and the High Court, as well as the Court of Appeal, the Supreme Court and the European Court of Human Rights, took the same view.
What stops the courts from saying, “Go on, take your son abroad”? The Supreme Court judgment made clear that the courts are effectively encouraged to discount the parents’ view of the matter. In “any question of the upbringing of a child”, the judges wrote, “the child’s welfare is the paramount consideration”. The judgment gives the impression – perhaps accidentally – that the wishes of the parents are not just outweighed, but reduced to nothing, by the court’s view of the child’s best interests.
David Jones, director of the Anscombe Bioethics Centre, believes there’s a problem with the law as it currently works in these cases. “It does not sufficiently consider the parents’ right and duty to make decisions for their child,” Jones says over email. If there is “significant risk” to a child’s life or wellbeing, “then decisions can be taken out of the parents’ hands,” he says. But “the parents should always be regarded as the prima facie decision-makers.”
Jones adds that “there is a virtue in accepting mortality and acknowledging the limits of medicine.” Nor should parents “have the right to force doctors to offer treatments that the doctors do not believe are medically indicated”. But transferring care is another matter. “Where parents are not being obviously unreasonable and where they can find a doctor who would provide the treatment they want, they should normally be allowed to transfer the care of their child to that other doctor.”
Mr Justice Hayden ruled that the decision had to be taken out of the parents’ hands – because of the risk that Alfie is in pain (though the judge agreed with the doctors that this was “unlikely”) and for the sake of Alfie’s “future dignity” and “autonomy”.
Some Catholics have accused Alder Hey hospital of “putting Alfie to death”. Others point out that Catholic teaching does not call for every possible treatment to be offered: when a course of action is too spiritually, physically or financially “burdensome”, it is not obligatory. If doctors aim at death, by medical means or by withdrawing food and water, that is a grave wrong; but to refrain from treatment, as the hospital has proposed, need not be.
Children are indeed put to death in Britain – 200,000 are killed in the womb every year – and there are doctors and judges who speak as though a severe illness removes the worth from someone’s life. So it is not entirely unreasonable to doubt the soothing voices telling us to trust the system. But this does not mean that Alfie’s case is necessarily one of “euthanasia” or “state-sponsored murder”, as some have claimed.
All that is not to exonerate the British medical and legal authorities. What remains puzzling, even to many observers who accept Alder Hey’s view of Alfie’s illness, is why the door has been closed on a highly respected hospital which has offered treatment. (I asked Alder Hey why they had not collaborated more closely with Bambino Gesù. They have not replied.)
One’s response to the case will depend on how important one thinks the parent-child relationship is, and how much one trusts the authorities to support life.
This division has been shown in the various statements from the Catholic hierarchy. Pope Francis’s meeting with Tom Evans, and a pair of unusually specific tweets on the subject, showed his support for the plan of flying Alfie to Italy.
But the English and Welsh bishops focused on defending Alder Hey hospital, praising its “professionalism” and “integrity”. As for Bambino Gesù’s offer, the bishops wrote what sounded almost like a rebuke: “It is for that hospital to present to the British courts, where crucial decisions in conflicts of opinion have to be taken, the medical reasons for an exception to be made in this tragic case.”
Liverpool archdiocese, meanwhile, faced criticism last week, when a leaked memo revealed that officials did not realise Tom Evans was Catholic – a fact which was emphasised in the February judgment and had thus been well known for two months. A spokesman told the Catholic Herald that the hospital chaplaincy staff “have been attentive to the needs of Alfie Evans, his family and those who care for him, throughout his stay at the hospital and pastoral care has been provided for them since the day of his admission there.” The archdiocese continues to offer support and prayers, the spokesman said.
Whatever happens next, there will now be calls for a change in the law. The view is growing in the medical and legal worlds that the law needs to be rebalanced towards the parents. The law of custody dictates that a child cannot be removed from his parents unless there is a risk of “significant harm”. Perhaps such a threshold could be used in disputes over medical treatment.
Given the rapid, and continuing, improvements in medical technology, there will surely be more cases which raise similar dilemmas. And as the Italian intervention showed, these are now matters of international concern.
For Alfie Evans, who was baptised and has not a stain on his soul, death can only be a prelude to eternal life with God. But what will most stay in the public’s mind is the witness of the Evans parents to an unyielding love put through an unimaginable ordeal.
Dan Hitchens is deputy editor of the Catholic Herald.
This is an updated version of an article in the April 27th 2018 issue of the Catholic Herald. To read the magazine in full, from anywhere in the world, go here.