First Charlie Gard…and Now Alfie Evans
Alfie Evans has died. Before he died, God be praised, he was baptized into the Catholic Church. As such, we can be confident that he is now experiencing the joy of the presence of his Heavenly Father. Our prayers are no longer for him, but for his parents, Tom and Kate, and his family. We also pray for the millions touched by his life and now mourning his death, and for the policy-makers and spiritual leaders who must now decide how to respond to the global controversy caused by Alfie’s case. One such answer would be an “Alfie’s Law”, requiring the State to leave primary care of children with their parents.
The Alfie case was extraordinary in many respects, not least because of the enormous outpouring of sympathy for the boy and his parents. His parents’ pleading media interviews, in which their haggard and care-worn appearance made tangible the fierce strength of their love for their son, and their courage in standing up to the totalitarian power of the State in pursuing what that love told them to do, touched the hearts of many.
And yet, in the end, the State won, and Alfie is dead. So now, as the fierce emotions of the battle recede into the ache of mourning, it is the time to ask: What have we learned from the Alfie case? And what can be done to ensure that a similar case never happens again?
It is worth remembering that it is less than a year since the case of Charlie Gard drew the gaze of the globe to the UK. The details of both cases are remarkably similar: young children diagnosed with incurable and fatal illnesses, but whose parents disagreed with medical professionals on the immediate next steps to be taken. In Charlie’s case, his parents wanted to fly their son to the United States for an experimental treatment. However, they were prevented from doing so by the hospital, which argued that the treatment was not in Charlie’s “best interests.” In Alfie’s case, his parents wanted to continue life support, but the hospital argued (in one judge’s words) that it “is not in (Alfie’s) best interests to keep him alive.”
The crucial similarity between the cases is that in each the final say on what was in the child’s “best interests” was given to the hospital, and not the parents.
When the State Turns Tyrannical
In both cases, supporters of the hospital and the State tended to focus on the medical issues involved. Given that in each case the child involved suffered from extremely rare (and in one case, undiagnosed) diseases, these issues were highly complex, beyond the grasp of the ordinary person. The argument of supporters of the hospital thus amounted to: “Trust the experts.” Or, at least, trust these experts, since even the experts did not always agree on the medical details.
Supporters of Charlie and Alfie, on the other hand, tended to cut through many of the medical complexities, to focus instead on parental rights. I believe that in this they got it exactly right. Recognizing that parental rights were the defining issue in each case dramatically simplifies each and helps clarify the gravity of the issues at stake.
Interestingly, as soon as one recognizes the centrality of parental rights, there is no longer any reason to expend effort disagreeing with the doctors’ diagnosis, or in questioning their motivation. Perhaps the doctors in each case were right: perhaps the experimental treatment would have done nothing to help Charlie, and perhaps removing Alfie from life support was a perfectly legitimate medical and ethical choice. And perhaps the doctors in each case truly did believe that their proposed course of action was in the child’s “best interest.”
But in the end, none of this matters. Because the central question still remains: who should have the right to make that final determination? In these cases, I believe the answer was clear: that was the right of the parents, and not the State. The tragedy and injustice of each case is not necessarily that life support was removed (if the parents had chosen to do so, this may have been ethically acceptable), but that it was the State and not the parents who made that decision.
Any ambiguity in each case was removed by the fact the parents in both cases had the independent means to provide the desired alternative treatments for their child. Strangers had donated hundreds of thousands of dollars to Charlie Gard’s family. Italy granted Alfie Evans citizenship, and an air ambulance was on the tarmac, ready to whisk Alfie to Gesu Bambino hospital at a moment’s notice. There was no question of either child being a burden on limited healthcare resources. All the doctors and courts had to say in each case was: “Fine. We don’t agree with you. But since what you want for your child won’t impact our hospital or health care system, take your son and pursue those treatments you deem best. That’s your right.”
But they didn’t. Instead, they leveraged the entire apparatus of the State to ensure that the parents’ desires were thwarted. No expense or effort was spared in standing between the parents and their wishes. The end result is that the actions of the hospital and the courts appeared to many as an exercise of raw, and even totalitarian power.
In a delicately-balanced commentary before Alfie’s death, Christian bioethicist Peter Saunders said he was willing to concede that Alfie’s doctors had concluded that keeping him on the respirator was doing more harm than benefit “in good faith.” And yet, he concluded,
“Overriding parental responsibility should only be contemplated when a parent is harming a child deliberately or out of ignorance or failing to care for it adequately. But none of these things apply in this case. … So, I do not see why Alfie’s parents should not be allowed to do what they believe is in the best interests of their son, even if it makes no difference to the eventual outcome of his illness. They are his parents after all.”
I believe the reason that public emotions ran so red-hot in both cases, is that many ordinary citizens could see themselves in Tom and Kate’s shoes. They could imagine themselves desperately desiring to do something for their own child, motivated by love, only to be prevented from doing so by an impersonal panel of government-appointed “experts.” They can imagine the sense of helplessness, of their smallness and insignificance against the size and power of the State, and the pain of watching the child they love die a slow death that they did not believe should have happened.
Parental rights are not absolute: but they should always be the default. In the Charlie Gard and Alfie Evans cases, far too many members of the “expert” classes (politicians, academics, and, sadly, some bishops in the UK) were far too quick to side with the experts over the parents. But as the history of the 20th century shows us in stark fashion, the State-sponsored cult of “experts” does not lead to greater well-being: it leads to tyranny.
The “Terrible Logic” Behind Denying God-Given Rights
The Catholic Church has constantly defended a different view of the human person from that of modernists and secularists. Human beings are created in the image of God (Gen 1:27) and are sacred beings. The dignity of the individual human person is the foundation of a moral vision for society. Moreover, the fundamental source of human rights is human nature, which is to say, that nature as created by God, who is the ultimate foundation of human rights. Human rights – including the rights of parents – are different from civil rights, which can be given or taken.
The ultimate source of human rights is not found in the mere will of human beings, in the reality of the State, in public powers, but in man himself and in God his Creator. These rights are “universal, inviolable, inalienable.” Universal because they are present in all human beings, without exception of time, place or subject. Inviolable insofar as “they are inherent in the human person and in human dignity” and because “it would be vain to proclaim rights, if at the same time everything were not done to ensure the duty of respecting them by all people, everywhere, and for all people.” Inalienable insofar as “no one can legitimately deprive another person, whoever they may be, of these rights, since this would do violence to their nature.”
— Compendium of the Social Doctrine of the Church, ¶153
As the Vatican’s Secretary of State Cardinal Pietro Parolin put it recently, it was “incomprehensible” that the hospital would not release Alfie to his parents. “It caused me an enormous sadness,” Parolin said, “in the face of a willingness, so openly expressed, so many times, and with such great commitment of means – the doctors of our Gesu Bambino Hospital went three times to Liverpool – there was a refusal to allow Alfie to be taken to Italy.”
“That is incomprehensible,” the cardinal said. “This was what struck me the most, it upset me. I cannot understand why.” However, then he added: “Or perhaps there is a reason, and it follows a terrible logic.”
Many of us also could not comprehend the species of stubbornness that would see the hospital refuse Alfie’s parents the right to take their son home, even when their direst predictions were proved wrong and Alfie began to breathe on his own when his respirator was removed. We could not understand what callousness would lead to the necessity of Alfie’s parents pleading with doctors and nurses before they would agree to administer the basic human necessities of food and water to Alfie when he continued to live far longer than they said he would.
In the end, we must face the possibility that, whatever the intentions of individual nurses and doctors, there was a “terrible logic” at work in the Alfie Evans and Charlie Gard cases. That logic is the same logic that has undergirded most of the atrocities of the past century: it is the lie that the State and the “experts” trump the family and the individual. It is the lie that the rights and dignity of the individual are subordinate to the power and planning of the State. This is the logic of the Culture of the Death.
Against this terrible logic, the Catholic Church has always emphasized the absolute worth and dignity of the human person and the family, and the primacy of the rights of parents. This is not only morally correct, but it also has the practical effect of holding in check the totalitarian tendencies of the State.
Right now, there is a new parliamentary move in Great Britain to change the Children Act of 1989, which ultimately strips parents of their legal rights as primary custodians and caregivers, and instead entrusting these rights to the State. A proposed law – “Alfie’s Law” – would return to parents more legal rights in medical decision-making.
MEP Steven Woolfe, who is leading the campaign, said outside Parliament that “a dangerous trend” has emerged of parents being deprived of the right to make healthcare decisions. “Parent’s rights should neither be ignored nor dismissed as irrelevant by hospitals and courts, who believe they know best and have the power, money and resources to overwhelm families who simply want to save their child.”
An “Alfie’s Law” would be an encouraging first step. Of course, nothing can ever replace Alfie Evans and Charlie Gard. Nothing can ever give back to the parents the right that was theirs to make the decision that they felt was best for their child. But if the massive publicity that surrounded their cases helps prevent other families and children from experiencing the same pain, their lives will not have been lived in vain.