Emotions are high; a child is being removed from medical interventions that have been keeping him alive; doctors and staff, the entire U.K. judicial system, are being condemned by pundits and excoriated by social media. The case has roiled the United Kingdom and the public is taking sides in the streets and across the internet. Members of “Alfie’s army” have even attempted to storm the hospital where the patient is being treated to liberate him from the hospital’s care. But is the treatment being offered to Alfie Evans, a toddler suffering from a so-far-undiagnosed neurological disorder, moral, immoral or even medically inappropriate?
Catholic teaching on end-of-life care and treatment for patients in a persistent vegetative state can help address the controversy, says Kevin Wildes, S.J., a bioethicist and president of Loyola University New Orleans. But while the tradition can help make sense of Alfie’s plight, it cannot fully mitigate the emotional suffering of family members closest to him or even, apparently, put a stop to end-of-life controversies like the one consuming Alfie and his family. They seem to crop up periodically in the United States and now with an increasing frequency in the United Kingdom.
The months-long legal battle between Alfie’s parents and his doctors at the Alder Hey Children’s Hospital in Liverpool has even drawn in Pope Francis and Italian authorities—unhelpfully, some medical ethicists say. The pope and political leaders in Poland and Italy have supported the family’s desire to have Alfie removed from Liverpool and cared for at Bambino Gesù, the Vatican’s pediatric hospital in Rome. He has even been declared an honorary Italian citizen.
Doctors treating Alfie say that he has little brain function and that further treatment is futile—whether in Liverpool or in Rome. They say there is no known treatment for his condition; in fact, there is not even a diagnosis for it. He has been in a semi-vegetative state since he was brought in for care after suffering seizure-like symptoms in December 2016.
Is the treatment being offered to Alfie Evans immoral or even medically inappropriate?
But the ventilator that had been helping Alfie Evans breathe was removed by court order on April 23, and he has since been breathing on his own with some assistance. Now U.K. medical staff are providing oxygen, and they have restored hydration and nutrition interventions.
The British medical system has been indicted by critics who say that cost has been a factor in the decision to take Alfie off his ventilator, though staff at Alder Hey insist their only concern has been for the child’s well-being. John Paris, S.J., the Walsh professor of bioethics emeritus at Boston College, argues that it is entirely appropriate to take the cost of treatment into consideration in such decisions, along with other criteria like patient suffering or the apparent futility of further medical intervention.
Father Paris believes that, as in the Charlie Gard case which generated similar controversy and a previous intervention by Francis, the pope’s pastoral intentions in his outreach to the Evans family have been interpreted incorrectly as a signal that therapeutic treatment could be available for Alfie. But at Bambino Gesù, Father Paris believes, Alfie Evans would only receive care similar to what he is already receiving in Liverpool—that is, comfort as his natural death approaches.
Teaching vs. ideology
The church offers guidance on the meaning of extraordinary and ordinary care in the treatment of the critically ill and people in persistent vegetative states, but the teaching is often unable to overcome ideologically driven controversy and confusion in such cases, Father Wildes says. That is particularly true in the United States, he thinks, where end-of-life controversies have been driven by abortion politics, sometimes in contravention to the church’s actual teaching about the care of patients nearing death or in persistent vegetative states.
The church does not teach that every possible recourse must be taken to preserve life. The social dialogue on end of life is too often driven by “ideologues,” Father Paris complains. “They are not interested in the tradition but their ideology, and that often drives them into positions that are contrary to the tradition.”
Father Paris has asked hundreds of audiences across the country over the years whether they would want to be maintained by a ventilator in persistent, well-diagnosed vegetative state or allowed to die. Out of thousands so polled, he says, only two audience members have ever expressed a desire to be kept alive under such difficult circumstances.
“Unfortunately, the abortion politics in the United States have led many Catholics to this absolutist position on protecting all life at all times,” Father Wildes says, “but that’s not our tradition.” The Catholic end-of-life criteria, he argues, developed over centuries, has been succinctly articulated by Pope Pius XII in an address to anesthesiologists in 1957 and by documents like the Declaration on Euthanasia in 1980. This tradition, with an eye on “the attainment of the higher, more important good,” encourages the acceptance of the limits of medical intervention and the welcoming of a natural death. What that means will vary from patient to patient, he says.
“There is no magic list of what is extraordinary and ordinary…. What makes that distinction workable is the quality of life and the decisions of the patient,” he says, adding, “What is extraordinary for one patient may only be ordinary for another.” The patient’s guidance on such matters is crucial and in its absence because of incapacity or immaturity, the guidance of the patient’s proxies—in Alfie’s case, his parents.
“Unfortunately, the abortion politics in the United States have led many Catholics to this absolutist position on protecting all life at all times.”
But even the parent’s decision-making role has limitations. Involuntary physical movements by patients can be misinterpreted by loved ones as persisting consciousness. “People see what they want to see,” says Father Wildes. It may be a hard thing to hear, say bioethicists, but parents, deeply invested in the fate of their children, are often not the best judges of appropriate medical interventions, nor of end-of-life decision-making.
And certainly “a mob can’t be the ones to decide appropriate medical treatment,” adds Father Paris, referring to group of protesters who had attempted to rush the doors at Alder Hey hospital.
Some have such faith in technology that they believe “death is an option that you can take or not take.” They believe “we can have salvation through science and immortality through medicine,” he says.
But, he adds, “There are limits to what medical treatment can do.”
And there are theological nuances on the ultimate good that Catholics should seek when confronted by serious health crises. When faced with a critical illness, “we used to have prayers for a swift recovery or a happy death,” Father Paris observes.
Limits to parental rights
U.S. and U.K. law have established that parental rights over children are not absolute; children are not chattel. That limitation typically comes into play when parents are making decisions about children that are generally viewed as harmful or negligent. The decisions are harder to parse, especially amid the swirling emotion of social media debates, when they are propelled by sorrow, love and hope, as in Alfie’s case. But in recent years U.K. law has established a strong custodial role for the state in protecting the best interests of children, even when that circumvents or contradicts parents’ desires.
Both Father Wildes and Father Paris say they do not perceive evidence of euthanasia in the prescription for Alfie Evans’ treatment. In fact, they insist that the medical staff in Liverpool has acted professionally and in the best interest of their patient and are now being unjustly pilloried for it. They argue as well that the courts have acted properly in stepping in to halt further treatment, especially under U.K. law.
After a number of appeals within Britain and to the European Union Court of Human Rights, on April 24 a British judge ruled that the Evans family could be prevented from taking Alfie to Italy for treatment, a course of action that previous U.K. court decisions ruled would be futile and contribute to his suffering.
“The real issue is not what should be done,” says Father Paris, “but who will make the final decision.”
According to court documents, he is terminally ill “with a severe and progressive neurodegenerative condition. An M.R.I. scan taken in February 2018 revealed “the almost total destruction of his brain.”
Based on evidence introduced after medical evaluation of Alfie’s condition, provided by hospital staff and independent medical consultants, Justice Anthony Hayden ruled in February that the “terrible reality” was that “almost the entirety of Alfie’s brain [has] been eroded leaving only water and cerebral spinal fluid. By the end of February the connective pathways within the white matter of the brain which facilitate rudimentary sensation—hearing, touch, taste and sight—had been obliterated. They were no longer even identifiable on the M.R.I. scan.”
According to the court, “The effect of what had occurred was that Alfie’s brain was ‘entirely beyond recovery,’” and that efforts to move him to another facility, especially a proposal to conduct a tracheotomy to facilitate transport, would likely subject him to more “needless” suffering and risk of infection.
And despite the Italian hospital’s apparent willingness to accept Alfie as a patient now, in court testimony in 2017 experts from Bambino Gesù “shared the view that Alfie could suffer increased seizures in transit which have the potential to cause further brain damage, together with the evidence as to the possibility of Alfie experiencing pain and discomfort.”
“The real issue is not what should be done,” says Father Paris, “but who will make the final decision.”
In the United Kingdom, it has been the accepted practice that courts can make a final determination when parents and doctors conflict over the treatment of a child. In the United States, where personal autonomy is uniquely valued, Father Paris suggests, that responsibility remains contested in court battles that can drag on for years.
It is no easy thing for patients and family members, but a question out of the Catholic tradition on end of life pertains, says Father Wildes. “Spes salutis—what is the hope of health? We have to ask that all the time.
“Does anyone think that this patient is going to get better? Does anyone think that they are going to be able to leave the I.C.U.? Does anyone think that they are ever going to be able to go home? What is the hope of health?”
The technology-rich U.S. health care system may be able to offer costly, even extravagant interventions to prolong life, says Father Wildes, and specialists can lose focus on their patient’s overall health as they each assign therapies based on their skill sets. Someone, he says, has to be able to maintain a holistic perspective and ask: “What is the [beneficial] outcome here?”
From the outside, withdrawing nutrition and hydration can seem cruel, but both bioethicists insist that such a decision can “absolutely” fall within the Catholic tradition on accepting natural death when nutrition and hydration have been reduced, as in Alfie Evan’s case, to medical procedures. Withdrawing interventions when beneficial outcomes are not possible are not acts of euthanasia.
“What is the spes salutis?” Father Wildes asks. “If there is none, there is no obligation to do anything.”
Of course that is no easy thing to hear and to accept as a parent.
“The two worst things I’ve had to deal with as a priest and in practicing clinical ethics,” Father Wildes says, “are when a parent loses a child or a suicide.” It is deeply unnatural for parents to have to deal with, or even to contemplate their own child’s death. It does not help, he adds, when they have to do it under an international media spotlight. “Here you have this family making these spirit-crushing decisions, and being caught up in the vortex of all this media attention makes things all the worse.” End-of-life decisions are always deeply emotional especially when they revolve around a child.
“Nobody wants a child to die,” he says.