Alfie’s last days: a little boy’s life and death stoked a furious debate that will not soon end
Editor’s note: This article was reposted with significant updates and content on June 15, 2018. It was originally posted on April 26, 2018.
The uproar during the last unquiet month of little Alfie Evans’s life included debates over state obligations and parental rights and accusations of euthanasia and judicial overreach. Alfie, who died on April 28, was a British toddler whose plight came to international attention after courts in the United Kingdom denied his parents’ appeal to transfer him to the Vatican’s pediatric hospital, Bambino Gesù.
The global public took sides across the internet, and on the streets of Liverpool abuse rained down on the mostly Catholic medical staff at Alder Hey Hospital, where Alfie was being treated. In his last days, members of “Alfie’s army” even attempted to storm the hospital to liberate the 23-month-old from its care.
Alfie had been a profoundly sick child almost his entire life. He had been in a semi-vegetative state since he was brought into the hospital in December 2016 at 6 months, convulsing and feverish. It was soon evident he was suffering from what would remain an unidentified neurodegenerative disorder that had by February 2017 reduced much of his brain to cerebral fluid, according to court testimony.
Doctors treating Alfie or consulting on his case—even those brought in by his parents—concurred that therapeutic intervention was impossible and that palliative, noncurative “comfort” care was the only reasonable treatment they could offer. The team at Alder Hey wanted to remove the medical interventions that its members believed were delaying his death; his parents begged for the opportunity to continue his life—at least for the duration of a transfer to Bambino Gesù in Rome. As the impasse continued, mixed messages from Catholic church leaders abounded, including one from the very top.
Following an emotional meeting with Tom Evans, Alfie’s young father, Pope Francis personally intervened in the controversy in April, supporting the family’s desire to move the toddler to Bambino Gesù and dramatically raising the international profile of this British court dispute. But by then other Vatican officials had already expressed tentative support for the court’s order to remove the ventilator that had been keeping Alfie alive, and Archbishop Malcolm McMahon of Liverpool had advised Pope Francis of his confidence in the humanity and professionalism of Alder Hey’s medical staff.
End-of-life disputes can be complicated and nuanced and require a sober understanding of the underlying medical technicalities and ethical concerns.
Cardinal Vincent Nichols, the archbishop of Westminster and leader of the Catholic Church in England and Wales, told media during a visit to Poland in April that he believed everything possible had been done to help Alfie and criticized people who “sought political capital” from the tragedy “without knowing the facts.”
“It’s very hard to act in a child’s best interest when this isn’t always as the parents would wish,” Cardinal Nichols said, “and this is why a court must decide what’s best—not for the parents but for the child.”
John Paris, S.J., the Michael P. Walsh professor of bioethics emeritus at Boston College, an internationally recognized authority on Catholic teaching and end-of-life care, believes that the pope’s pastoral outreach to the Evans family was interpreted erroneously as a signal that therapeutic treatment might still be possible for Alfie—just as his previous outreach during the impasse over the fate of another British infant, Charlie Gard, had been the year before. But at Bambino Gesù, he says, though Alfie would have remained on a ventilator, the child would have had the same palliative care he was already receiving in Liverpool—that is, comfort care as his natural death approached.
Teaching Versus Ideology
The church offers guidance on the meaning of extraordinary care, which can be individually determined, and ordinary care, which is always required, in the treatment of the critically ill and people in persistent vegetative states. But the teaching is often unable to overcome ideologically driven misconceptions and confusion, says Kevin Wildes, S.J., a leading author and lecturer on bioethics and the retiring president of Loyola University New Orleans. That is particularly true in the United States, he thinks, where end-of-life controversies have been warped by the clamor of abortion politics.
As a former street-corner activist herself, Jacqueline Abernathy knows well that sidewalk pro-life counselors “have the luxury of being an ideologue when it comes to [elective] abortion because it is an intrinsic evil.” But that is not the case in most end-of-life disputes.
“All signs point to hospital staff coming to the realization that ‘we’ve done everything we can for him, and there is nothing more that can be done.’”
They can be complicated and nuanced, she says, and require a sober understanding of the underlying medical technicalities and ethical concerns. Ms. Abernathy is a bioethicist and an assistant professor of public administration at Tarleton State University in Stephenville, Tex., where she leads the Mortality Policy Project, a research initiative focused on public policy related to end-of-life decision-making.
She first became involved in end-of-life policy while advocating against plans to remove Terri Schiavo from feeding and hydration in 2005 in Florida. Though she still considers the outcome in the Schiavo case an act of euthanasia, Ms. Abernathy says over years of analysis and study she has come to more deeply appreciate the perspective from the medical side in such disputes and the role played by their often exacting ethical standards on treatment. And somewhere along the way she became a convert to Catholicism.
According to Ms. Abernathy, many of the commentators eager to condemn the staff at Alder Hey—or worse, to use the Evans family’s misfortune as the rhetorical tip of the spear in polemics against socialized medicine or a presumptive euthanasia regime in Britain—were simply uninformed about the medical and ethical complexities of the case.
In her overall assessment of the care that Alfie received at Alder Hey, she sees nothing that raises alarms. “All signs point to [hospital staff] coming to the realization that ‘we’ve done everything we can for him, and there is nothing more that can be done. And to continue to let him languish [on life support] is to invite more trouble and suffering.’”
Ms. Abernathy notes how the emerging belief in “vitalism,” that life is worth sustaining under any circumstance, often factors in to such end-of-life controversies. She finds most frustrating the partisans who deliberately spread misinformation about Alfie’s care to push their agendas.
“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.”
Because of modern marvels of recovery and life-extension, some have come to see “death is an option that you can take or not take.”
Catholic end-of-life criteria developed over centuries. They have 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 acceptance of a natural death, Father Wildes says. What that means will vary from patient to patient.
“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. “What is extraordinary for one patient may only be ordinary for another.”
The Catechism of the Catholic Church accepts “the refusal of ‘over-zealous’ treatment”: “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate.... Here one does not will to cause death; one’s inability to impede it is merely accepted” (No. 2278).
An individual patient’s personal guidance on end of life is obviously crucial, and in its absence because of incapacity or immaturity, the guidance of the patient’s proxies—which in Alfie’s case were his parents. But even the parent’s decision-making role has limitations. In the Alfie Evans and Charlie Gard cases, a critical conflict with secular authority arose over what constituted what the catechism would call the reasonable will and legitimate interests of the infants’ parents.
It may be a hard thing to hear, say bioethicists, but parents, naturally deeply invested in the fate of their children, are often not the best judges of appropriate medical interventions during end-of-life conflicts. Involuntary physical movements by patients in vegetative states can be misinterpreted by loved ones seeking evidence of persisting consciousness.
And because of modern marvels of recovery and life-extension, some have come to see “death is an option that you can take or not take,” says Father Paris. They believe “we can have salvation through science and immortality through medicine.”
But, he adds, “there are limits to what medical treatment can do.”
And there are theological nuances about the ultimate good that Catholics should seek when experiencing 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.
Whose Best Interest?
To G. Kevin Donovan, M.D., the disputes over Alfie Evans and Charlie Gard boil down to two related ethical questions: “Who should be privileged to make decisions?” and “What decisions can justifiably be made?”
Dr. Donovan, a pediatrician, is the director of the Edmund D. Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center. Unless some extraordinary circumstances disqualify them, he says, “parents are the natural decision-makers for their own children.”
“In this case, the medical team and the power of the state superimposed their values over [those] of the parents, not because the parents were acting in a morally wrong way but because their values did not coincide with the doctors or the courts.” He argues in a response delivered by email that “only when parents are acting in an unambiguous fashion to cause harm to their child should their role be usurped.”
But in the United Kingdom, it has been the accepted practice that courts are responsible for a final determination when parents and doctors disagree over the treatment of a child. Raanan Gillon, emeritus professor of medical ethics at Imperial College London, thinks that should change.
Though he admits that had Alfie Evans and Charlie Gard been his own children, he “would have allowed the two infants to die peacefully with palliative care,” he does not believe the additional care requested by parents imposed “unacceptable harm or injustice on the children” at a level “that would constitute child abuse and thus justify removing the parental right and responsibility to decide their children’s best interests.” His is an unpopular perspective among ethicists in Britain just now, so much so that he insists that it be noted that he expresses it as a private individual, not as a representative of any institution he has been associated with.
“The transfer they wanted for Charlie was really a bad idea that would have done him harm,” she says, worrying that he “would have been a human guinea pig.”
But doctors also have consciences and moral reservations about treatment that deserve to be respected, Ms. Abernathy points out. They cannot be required to provide treatment they believe violates their own ethical obligations to a patient simply because parents insist upon it.
Mr. Gillon agrees that doctors cannot be “morally or legally obliged to continue providing treatment that they considered futile or cruel.” But if willing medical staff can be located, he says, “the law should have been interpreted in a way that permitted other doctors to continue to provide treatment that the parents believed to be in their children’s best interests.”
Ms. Abernathy of the Mortality Policy Project is adamant that the treatment proposed for Charlie Gard was properly deemed burdensome by a British court. “The transfer they wanted for Charlie was really a bad idea that would have done him harm,” she says, worrying that he “would have been a human guinea pig” if he had survived his overseas transit for experimental treatment in the United States.
Despite her sympathy for the ethical misgivings of caregivers, Ms. Abernathy wonders if the team at Alder Hey should not have facilitated Alfie Evans’s transfer. Ideally, as such end-of-life moments draw near, family and staff form a partnership and jointly agree on a treatment strategy. But at Alder Hey, the collaboration with the Evans family broke down.
Perhaps this happened, she speculates, because the hospital staff knew that British jurisprudence in such cases could simply confirm the protocol they deemed most appropriate over parents’ objections. Ms. Abernathy says moving Alfie to the Bambino Gesù “did not seem to me...an excessive request for parents who wanted to have the peace of mind of knowing that they had exhausted all options.”
But what Alfie’s parents sought for their son was not uncomplicated. They asked that his respiratory support be continued while Alfie was transported by air ambulance to Rome (and perhaps later from there to a hospital in Munich for further treatment). For that to be accomplished and to allow them to care for Alfie in a homelike environment, their plan required that he undergo a tracheotomy to facilitate assisted breathing and a gastrostomy, a stomach incision, to allow nutrition. They told British judges that after about six months, if there remained no improvement in Alfie’s condition, they would, “with whatever degree of difficulty,” then accept the withdrawal of his life support.
“I have on the parents’ behalf taken very great care to evaluate the quality of Alfie’s present circumstances, even though I accept entirely the conclusion of the medical evidence that treatment for Alfie is futile,” Justice Anthony Hayden wrote. “It does not follow axiomatically that the futility of Alfie’s situation leads to the immediate withdrawal of ventilation. Life itself has intrinsic value, however tenuous or vestigial its hold.”
But in the end, he ruled “with obvious sadness,” as an appeals court put it, “that they would achieve nothing” through their plan to move Alfie to Rome and that the proposal for additional interventions to facilitate it were not in Alfie’s best interest. In reaching that conclusion, the judge cited Pope Francis and the Catechism of the Catholic Church. He also relied partly on the testimony of physicians from Bambino Gesù, who had testified that Alfie’s transport to Rome would likely produce seizures that could add to the neurological damage he had already suffered.
It is no easy thing for patients and family members, but a question from the Catholic tradition about 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?”
Based on evidence introduced after medical evaluation of Alfie’s condition, provided by hospital staff and independent medical consultants, Justice Hayden had ruled in February that the “terrible reality” was that “almost the entirety of Alfie’s brain [has] been eroded...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.”
In Alfie’s case, doctors could not be sure that Alfie’s neurological degradation was such that he could no longer suffer pain (though they suspected so). That meant the additional procedures sought by his parents to facilitate his transfer could have caused him discomfort. They surely created the opportunity for opportunistic infections that would have meant more suffering and interventions with no likelihood of a positive outcome.
“The real issue is not what should be done,” says Father Paris, “but who will make the final decision.”
The technology-laden 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?”
In evaluating Alfie’s condition, “the real issue [was] not what should be done,” says Father Paris, “but who will make the final decision.”
Of course, that is no easy thing to hear and to accept as a parent, especially when the limits on medical intervention are not uniformly agreed upon by Catholic bioethicists.
“Every possible intervention, such as continued support on the ventilator, is not morally obligatory in the eyes of the church,” Mr. Donovan agrees. “But having acknowledged this, we must not be too quick to pull the plug. There is still a range of permissible, although debatable interventions when the burden is not seen as exceeding the benefit, when there is a spes salutis, no matter how slim.”
It is a judgment call that should normally be the parents’ right to make, he argues.
The difference of opinion between the doctors and Alfie’s parents “must be seen as a different valuation of Alfie’s life,” says Mr. Donovan. “The doctors and courts saw him as better off dead, and the parents wanted to support his waning life until they could see that there was no longer hope of a diagnosis or therapy,” he says.
“Continued ventilatory support of the disabled life is not obligatory but is permissible in the eyes of the church,” he adds. “The withdrawal of nutrition and hydration, as well as the withholding of nasal oxygen, suggest not so much an intent to relieve [Alfie] of the burden of some medical interventions but rather an intent to relieve him of his burdensome life. In this case, it seems a premature attempt to designate and accelerate the outcome.”
Medical staff at Alder Hey, indeed, were accused of euthanizing Alfie Evans when nutrition and hydration tubes were removed at the time his ventilator was withdrawn. The cessation of these interventions, some argued, clashed with the church’s understanding of morally obligated treatment for patients in persistent vegetative states.
But Ms. Abernathy describes that step not as an act of euthanasia but as a standard medical practice meant to limit potential complications after the removal of a ventilator. Alfie was dying, Ms. Abernathy points out, unlike Terri Schiavo, whose death was directly caused by the withdrawal of artificial hydration and nutrition.
Patients who are dying, she says, do not require nutrition and hydration and potentially could endure more suffering because of such interventions. In Alfie’s case, after it was clear that he was continuing to breathe even without a ventilator, the other interventions were restored.
From the outside, withdrawing nutrition and hydration may seem cruel, but both Jesuit 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.
That does not make the decision to do so easier for parents.
“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,” he says, “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.
Editor’s note: This article was reposted with significant updates and content on June 15, 2018. It was originally posted on April 26, 2018.