The case of Alfie Evans: what does Catholic tradition say?

  Alfie Evans, a seriously ill British toddler, is pictured in this photo posted by his mother, Kate Evans, to the Facebook group, Alfies Army Official, April 24. (CNS photo/Kate Evans, Alfies Army Office Facebook group) 

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.

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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.

Comments are automatically closed two weeks after an article's initial publication. See our comments policy for more.
Molly Moring
4 weeks 1 day ago

Fr. Martin I'm struggling with this article. Is this your position as well? . Since, when do we as mortal men know better then God in "all his designs" as Blessed Solanus Casey would say. Removing nutrition and water from a child that remains undiagnosed is an ethical minefield. Further, Is it out of the realm of possibility that we are instead witnessing a miracle of life?

Mary Therese LEMANEK
4 weeks 1 day ago

The mere fact of diagnosing a condition does not in any way mean that there is a viable treatment. While the doctors are mere mortals, they are educated and experienced, through whom God works, and see no potential for any fullness of life for this child.

Molly Moring
4 weeks 1 day ago

Indeed, God does work through physicians but physicians are not God.

Kathleen Van Buren
4 weeks 1 day ago

No, but I see no miracle here. If there were signs that the child's brain is regenerating, that would be miraculous. If there is a lesson to be learned in this heartbreaking situation, I'm not sure what it is. I humbly thank the good Lord that I've never been in a position that I had the responsibility that these parents face. Whatever is God's will, I pray they have the strength to accept it.

Molly Moring
4 weeks 1 day ago

A child that is only 23 months old has been on a ventilator for 15 months. In one day, his vent was completely removed without being weaned as would be done in standard loving palliative care. Family was told he wouldn't survive 3 minutes and 3 days later, he is still breathing on his own. That is a miracle. The parents in this situation have been treated cruelly. They were made to sleep on the floor the day prior to life support being removed. They had to beg for help after their parental rights were terminated and their beloved child, Alfie was made a ward of the state. For what crime? The crime of loving and wanting a say in the welfare of their child. This child and others belong to God, not the state, and not a panel of doctors that have disparaged and treated them with nothing but contempt. I can only pray that this article does not lead others to see Alfie's life as not worth living. because it most certainly is worth living.

Henry George
3 weeks 4 days ago

Mary,
Doctors are applied scientists.
They are not inherently any wiser than anyone else or any more compassionate,
some Doctors I have been treated by were the least wise and least compassionate people I have ever met.
As if they were treating and object, not a human being.
Please do not presume that God works through every Doctor for what is best for the patient.

That the Doctors could not see any potential for fullness of life for Alfie does not matter one bit.
His parents loved him and Alfie loved his parents.
Please leave it up to them when they may or may not remove life support.
It is really none of the Doctor's business, nor is it yours.

As for fullness of life - who are you or anyone else to judge those who are disabled
as to whether their lives have the fullness of life ?

Chris Dinh
4 weeks 1 day ago

I am a critical care physician. This article does a very good job addressing the nuanced issues surrounding end of life decision making, particularly surrounding futility of care.

David H
4 weeks 1 day ago

Maybe I'm just not as familiar as I'd like to be with Catholic bioethics, but this article seems incomplete. To say the decision on Alfie's treatment should be taken away from his parents is to say that further care is impermissible, not optional. But all you argue, unless I misunderstand you, is that there is no obligation of further care.

Matt Blumenfeld
4 weeks 1 day ago

Well yes there is an obligation for further care, but there's no obligation for "extraordinary means" such as a ventilator since there does not appear to be any hope for recovery. But the thing is, no one is arguing that. It's a total straw man. The Church's teaching is clear here. It's not complex at all. Withdrawing food and water is absolutely immoral unless it causes undue suffering amid the process of dying.

We could all take a lesson from St. John Paul II who himself continued to be nourished but declined other extraordinary support while he publicly suffered and died. He provided a very clear example of "how to die" in a world of modern medicine.

Read Evangelium Vitae and then see his own example of how he lived that teaching!

David H
4 weeks ago

I think I was unclear. I mean that even if we accept every argument in this article, and decide that there is no obligation to continue care, there is still the problem that the parents want to continue care and are being prevented from doing so. Even if you think additional care is not required in cases like this, surely you think it is at least permissible.

Ellen B
3 weeks 4 days ago

There was no treatment for him. There was only continuing on a respirator or not, all the while Alfie continuing to feel pain.

Matt Blumenfeld
4 weeks 1 day ago

This article: It's okay to keep food and water from a patient in circumstances where the outcome won't improve.

CDF in 2007: Actually.. no. They are ordinary means. They can only not be administered if it would actually worsen the situation: http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con…

Pope Francis: Send a military helicopter to bring this boy to the Vatican.

Mark M
4 weeks 1 day ago

More vague Jesuit-speak from those without children....not surprising.
The parents were entirely within their rights. The pope understood this and spoke and acted accordingly. So did the Italian government, the Polish president and the president of the European Parliament.
This quickly became a control grab by the British medical behemoth.
Control, not medical assistance became the priority. Parental rights?
Don’t make me laugh. British children are clearly state property.
The method in which the ventilator was removed and the inaction which immediately followed says it all...they wanted him dead ASAP.
The bioethics priests can perform all the theological gymnastics they wish, but this Catholic child was cruely denied the option of life offered by his Pope and the Vatican children’s hospital.

Arnoldo Miranda
4 weeks 1 day ago

I don't know whether to laugh or cry at the articles premises. Truly we live in a secular mindset imbued by a certain Jesuit casuistry and rationalization. This position has long forgotten the meaning and the purpose of the often cited Jesuit's Latin maximum:

Ad Majorem Dei Gloriam

Bill Niermeyer
4 weeks 1 day ago

Keep the kid as comfortable as possible with proper nutrition and care and let our Lord Jesus do the rest. We cannot give up on praying for this kid. May his Guardian Angel hold him firmly at this critical moment of his life.

ron chandonia
4 weeks 1 day ago

I was waiting for AMERICA to weigh in on the side of death, hoping against hope that perhaps you wouldn't. Hopes dashed again.

Kevin Murphy
4 weeks 1 day ago

Fish gotta swim, Jesuits gotta condescend and rationalize, coldly. I see a child opening his eyes in his mother's arms. He should not be starved or caused to die. They've taken away his ventilator and he continues to breathe. The state has no place telling a parent when and how their child should die. I don't care how many Jesuit "bioethicists" are lined up against him.

Mary Gail Frawley-O'Dea
4 weeks 1 day ago

I cannot imagine the heartbreak of these parents. I so hope that I would be loving enough of my child to let her go, to trust the MRI, to trust the doctors who have done everything to ascertain that this little boy's brain is virtually non-existant. I would hope a chaplain or a hospital counselor could help these parents grieve and accept reality. I love the concept of hope of health mentioned here. It is a healing reframing -- the question is not just will he die, the question also is, "is there a reasonable hope for health." When the shoe is on the other foot and it is time for me to die, I would not want to impoverish my children or husband financially, emotionally, or physically by staying when there is no hope of health.

Mark M
4 weeks 1 day ago

If you think that scenario or anything like it actually took place, you live in a fantasy world.
The NHS plays for keeps. A twenty one year old English working class man was taken into a private room where the powers-that-be explained to him his future.
He clearly understood and complied,
Bet on it.

Tim O'Leary
4 weeks ago

Kevin - I am a medical doctor. I agree with the medical conclusions (if correctly reported) that Alfie has irreversible brain damage and little consciousness and is likely to die soon, unless there is a miracle. However, I believe this article fails in describing this situation correctly. It contains significant bias against family rights and the U.S. healthcare system. It is, in fact, a very good argument for reducing the role of the state in most healthcare decisions, especially of life and death. Whenever you give the final decision in healthcare to a state, money trumps love. When the state is atheistic or secular, human life is no longer seen as sacred, and human dignity suffers.

First of all, this article misses the following Catholic positions that Pope Francis does not.
1. The parents love their child, the state does not (it cannot)?
2. The parents put love & care before cost, the state cannot.
3. Food and water is ordinary, not extra-ordinary. It should not be withdrawn.
4. Hopelessness is not a strategy. Miracles are possible.

The state should not to be forced to pay for hopeless treatment, but it has no right to prevent others from doing so, out of their own funds. In this situation, several charities, the Bambino Gesu hospital and the Pope are willing to pay for ordinary care for the child. It is a pure and egregious power play to prevent that. The hospital and lawyers fully expected the child to die without life-support (as I did), but they should let others try, if others are providing their own resources. The UK legal and medical authorities arguing that moving Alfie might cause "needless suffering" is disingenuous, since they are willing to starve him to death. If Alfie cannot feel the pain of starvation and dehydration, he will not feel any pain on being moved.

Here are some obvious journalistic biases: Referring to parents "children are not chattel" vs. referring to state "strong custodial role...best interests, even when circumventing or contradicting parents." The article refers to the UK NHS system in unblemished positive terms (custodial, best interests, courts resolving conflicts, holistic) whereas it refers to the US system uniformly negatively (court battles for years, extravagant, costly, specialists losing perspective).

What you left out is that the UK NHS has is riddled by rationing, equipment problems, staff-shortages, cost over-runs, anti-Catholic secular bias, and keeps new treatments off the market to manage cost. That is why there is a private system in the UK for wealthy people (the famous Harley Street). The US system is way too costly, but it has the advantages of having the latest technology and drugs, quick access to tests and specialists (even for the poor in emergencies). and a diversity of cultures (Catholic hospitals are still free to follow their principles here, though it is a battle),

All disputes in the US re end-of-care are between family members, not between family and state. What happened in the UK would not happen in the US unless (until) the government takes over the healthcare system.

Henry George
3 weeks 4 days ago

Hi Tim,

I wish there were more doctors like you and I wish there were more Jesuit Medical Ethicists like you.
Why anyone wants the State to decide who lives and who dies is beyond me.

Christopher Lochner
4 weeks ago

Bump.

Therese Coughlin
3 weeks 6 days ago

The little boy should have at least received adequate hydration and nutrition. Without more detail, the question about "hope of health" is too broad to be useful. The association the author makes between Alfie's life and "chattel" (as pertains to his parents' care for him) is offensive.

Henry George
3 weeks 4 days ago

As far as I can tell, Alfie's parent loved him.

Why not leave to them to decide what to do ?

Why does the Hospital or the State or the Courts
have to have the final say ?

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