In Charlie Gard’s case, a basic moral principle: should the state decide?

In Charlie Gard’s case, a basic moral principle: should the state decide?

By Phil Lawler | Jul 05, 2017

Behind the complicated medical and legal questions of the Charlie Gard case ]the latest on Catholic World News: UK officials resist diplomatic pressure to allow treatment of Charlie Gard], there stands one clear moral principle:

Loving parents—not hospital administrators, not judges, not government officials—should control the treatment of their children.

Should Charlie be removed from his life-support system? Would nucleoside therapy be a viable option? I don’t have an intelligent opinion on those questions. Neither do you—unless you happen to be an expert on Charlie’s case and the rare mitochondrial disease that afflicts him. But his parents are convinced that the experimental therapy is the best option, and in this case they are the experts.

Are there times when the best interests of the patient are served by ending active medical treatment and concentrating on palliative care, as the doctors at Greater Ormond Street Hospital have recommended in this case? Yes. But in this case the parents judge that their child’s interests could be served best by one last effort at treatment.

Are there times when the state must intervene, overriding the rights of parents, to protect a child’s welfare? Yes. But those extraordinary cases arise when irresponsible parents put their children in danger. In this case there is no evidence whatsoever that Charlie’s parents are irresponsible; quite the contrary. They are trying their best to keep their child alive.

Are there time when accepting a quick death might be more charitable than prolonging a patient’s suffering? Yes. But the doctors are not arguing that Charlie is in pain, nor have they demonstrated that his welfare would be at risk if he were transferred to another hospital for the therapy his parents want.

So why are administrators at Greater Ormond Street Hospital so determined to oppose the parents’ wishes? Why have British and European courts upheld the power of the administrators, over the rights of the parents? Even now, why are political leaders in the UK reluctant to intervene, telling American and Vatican officials that they cannot countermand a court order?

There’s an important principle at stake here. The courts and the British establishment are basing their decisions on the assumption that the state—not the individual, much less the parents—should make decisions about medical care.

Why have hospital officials refused even to transfer Charlie to a hospice, where he could receive the same palliative care that they have prescribed? Is there any other plausible explanation for that heartless inflexibility, aside from their determination to enforce their decisions in preference to those of the child’s parents?

From the perspective of the medical establishment, Charlie Gard is not a suitable candidate for experimental treatment. His prognosis is poor. Even if the treatment were successful, it is too late to reverse the serious brain damage that the disease has caused. At best Charlie will have very severe disabilities. The High Court applauded his parents for recognizing that “his present quality of life is one that is not worth sustaining.” But the question before the court did not involve sustaining Charlie’s current condition; nobody was proposing to maintain the medical status quo. The question was whether or not to attempt treatment that might improve the patient’s quality of life.

And what Charlie’s parents have actually said is somewhat different from what the High Court suggested. His father testified that if the experimental treatment did not produce results, they would accept the inevitable and end the treatment. “After three months we would want to see improvement and, if there wasn’t, we would let go. This is not the life we want for Charlie.” There is no danger, then, that Charlie Gard would languish helplessly for years in a hospital bed.

Nor is there any danger, at this point, that care for Charlie Gard will be a burden on his family or his nation. His parents have raised enough money to cover the costs of nucleoside therapy, and at least two hospital have offered free care anyway.

The doctors of Greater Ormond Street doubt that nucleoside therapy would be useful in Charlie’s case. Maybe they’re right. Charlie’s father concedes that possibility. But why not give it a try? An attempt at treatment would not be burdensome to Charlie, to his family, to the hospital, or to society. Yes, it’s a gamble. Charlie’s parents—who know him and love him best—have determined that it’s a risk worth taking.

Two statements from Catholic prelates—one from the Pontifical Academy for Life, the other from the bishops’ conference of England and Wales—missed the point entirely by offering only expressions of sympathy for Charlie’s parents without energetically defending their rights against the bureaucratic encroachment. (In fact, both statements sympathized with the courts and the hospital administrators as well, strongly suggesting that the parents should bow to the decisions of these authorities.) Even the later statement from Pope Francis, while it was a considerable improvement, still failed to address the central moral principle. The Russian Orthodox Metropolitan Hilarion was more forthright, condemning the European Court of Human Rights for a “monstrous” decision that ignored the fundamental human rights of a helpless child and the parents who love him.

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4 comments on “In Charlie Gard’s case, a basic moral principle: should the state decide?

  1. Not much time left for the poor child. Have he been baptized?

    When you were young and your heart
    Was an open book
    You used to say live and let live
    (You know you did)
    (You know you did)
    (You know you did)
    But if this ever changin’ world
    In which we live in
    Makes you give in and cry
    Say live and let die
    Live and let die

    Paul McCartney, 1973

    • Has he been baptized? (I’m getting worse at this.)

      • Yes, I saw the picture earlier but can’t find it now. Here’s “print proof” from a recent article in The Atlantic:

        The case also has religious dimensions: On their instagram page, Yates and Gard documented their celebration of their son’s baptism and showed him clutching a pendant of St. Jude, the Catholic figure most often associated with hospitals and medical care.

  2. Fresh Hopes for Charlie Gard

    New York hospital offers to ship experimental drug to help the critically ill 11-month old baby; Italian medical association rejects court rulings opposed to treatment, saying it is a consequence of a mental attitude “polluting the roots of medical practice.”

    Edward Pentin
    7/7/17

    Hopes are rising for critically ill Charlie Gard after a New York hospital offered to ship an experimental drug to the UK to help treat the 11-month old baby.

    The New York Presbyterian hospital and Columbia University Irving medical center also offered to admit the 11-month-old if legal hurdles could be cleared, according to The Guardian newspaper.

    Meanwhile, the Register has learned that the Vatican-run Bambino Gesu pediatric hospital is considering a new therapeutic plan that could allow Charlie, currently being cared for at Great Ormond Street Hospital (GOSH) in London, to bypass legal obstacles and be taken to Rome.

    Later today, President Donald Trump will raise the matter during talks with British Prime Minister Theresa May at the G20 Summit in Germany.

    Both Trump and Pope Francis have sent messages of help and support over the past week which, according to a spokesman for Charlie’s parents, Chris Gard and Connie Yates, had given them hope.

    “President Trump has a very good understanding of the whole case and he did not make an off-the-cuff tweet,” the spokesman said, while Connie Yates told Sky News that both the Pope and Trump “are traditional men who believe in the family. They believe in our case and understand why we believe it is right to continue fighting so hard to save Charlie.”

    Charlie, who suffers from a very rare form of mitochondrial disease that leads to muscle depletion and brain damage, has been at the center of a lengthy legal battle involving his parents who want to take him to the US for experimental therapy, and doctors at GOSH who believe nothing more can be done to save his life.

    The hospital was to have switched off Charlie’s life support on June 30 but prolonged it after a public outcry. No one is certain whether or not Charlie feels pain, GOSH has said.

    Charlie’s parents have raised nearly $2million for experimental life-saving treatment.

    The Pope said on Sunday that Charlie’s parents should be able to “accompany and treat their child until the end” and the Bambino Gesu offered to care for the boy but was prevented from doing so due to legal reasons in Britain.

    Earlier this week Cardinal Carlo Caffarra, the founding president of the Pontifical John Paul II Institute for Studies on Marriage and the Family, had strong words in support of Charlie and his parents, calling the rulings against the parents’ wishes the “pit of barbarity.”

    Asked for his views on the case which has led to protests in London and Rome against state interference in parental rights, the Italian cardinal said: “We have come to the end of the road of the culture of death.”

    “It is now public institutions, the courts, who decide if a child has, or hasn’t, the right to live — even against the will of the parents,” he said, adding: “We are the children of institutions, and we owe our lives to them? The poor West: it has rejected God and his paternity and now finds itself entrusted to bureaucracy! Charlie’s [guardian] angel always sees the face of the Father (cf. Mt 18:10).”

    Cardinal Caffarra exhorted the authorities to “stop it, in the name of God. Otherwise, I say to you with Jesus: ‘It would be better for you if a millstone were hung round your neck and you were cast into the depths of the sea.’ (cf. Lk 17:2).”

    Britain’s Foreign Secretary, Boris Johnson, said Thursday it was a “deeply tragic and complex” case for all involved, but that he believed it was right that decisions continued to be led by “expert medical opinion, supported by the courts, in line with Charlie’s best interests.”

    But the Italian medical association Scienza & Vita (Science and Life) has rejected that position, also held by GOSH and subsequent court rulings.

    It recognizes “clinical situations in which the insistence on practicing medical and surgical interventions and treatments is not reasonable, or because it is totally irrelevant to the support of a life that is now ending, or because they are the cause of unnecessary suffering.”

    But it adds that Charlie’s illness “is not terminal,” nor are ventilation, feeding and artificial hydration “so hard for him to recommend suspension” as the rulings state.

    Why, then, the association asks, should a “seriously ill child be killed in advance of taking away the care he needs?”

    “The justification for the irreversible death sentence inflicted upon Charlie is that this would be his ‘best interests,’” it continues, but behind this decision is “a mental attitude that is polluting the roots of medical practice, legislation and widespread sentiment: the idea that human beings, with a low quality of life, have a lower dignity and worth than others, and that it is unreasonable to waste on them valuable resources that could be destined elsewhere. It is the ‘throw-away’ culture of which the Charlie case has become a tragic symbol.”

    A large number of people in Italy take a similar view, and further protests and prayer vigils are being organized. A second demonstration took place last night outside the British embassy in Rome, and others are planned outside Downing Street.

    Archbishop Giampaolo Crepaldi of Trieste, Italy, and a former Secretary at the Pontifical Council for Justice and Peace, said this week that the Charlie Gard case is, in fact, a move to “apply euthanasia” and this “can not be accepted.”

    He added that the case is “devastating because the implementation of the judgment would undermine the very foundations of Christian humanism and would open a path to a radical departure from our civilization.”

    “Charlie Gard needs the affection of his parents, the commitment of doctors to assist him, and the prayers of Christians, not sentences that decree death,” he said. “Death by the state is a horrifying ideological invention.”

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