Wednesday, August 2, 2017

Charlie Gard, Justina Pelletier and Terri Schiavo

The case of Charlie Gard, the British baby afflicted with the rare mitochondrial DNA depletion syndrome who a London hospital would not discharge to his parents so they could take him to the U.S. for experimental treatment, brought together a number of increasingly portentous trends and realities that have come to define our age.

The first obvious reality is the advancement of the euthanasia/“quality of life” mindset. The medical staff and administrators of the Great Ormond Street Hospital in London apparently decided somewhere along the way that baby Charlie’s case was hopeless and it would be better if he were just allowed to die. It was not a medically indisputable position, not only because such conclusions are hardly infallible and in fact often enough turn out to be erroneous, but because they apparently were unaware of or cavalierly dismissive of the new experimental treatment options. In the end, the medical window of opportunity to pursue those options closed and Charlie went downhill—seemingly because the hospital pursued a lengthy legal battle to oppose the parents’ wish to allow him to avail himself of those treatments that reputable medical experts and facilities in the U.S. were offering him. It looks like Charlie was a victim of being categorized as “unworthy of living” on the grounds of disability. Anyone who follows the euthanasia developments in Western Europe and even North America knows how much this attitude, advanced by pro-euthanasia ideologues, has taken hold. He also should recall how it first was applied to the disabled in Weimar Germany and, of course, advanced from disability to the further “categorizations” of people unworthy of life under the Nazis.

The second reality is the substantial suppression of parental rights. This isn’t surprising in an age when we see the state increasingly substituting its preferences for those of parents not just in education but even basic child-rearing practices. The Charlie Gard case, after all, happened in the U.K., one of whose constituent parts, Scotland, pushed a few years ago to assign a social worker to every child at birth to second-guess his parents. The mentality in Western countries—we see it massively in the U.S.—that views every parent as a potential child abuser, permits child protective system (CPS) type agencies to intervene with abandon into innocent families on the basis of false abuse and neglect claims, and thinks that the state knows more about how to rear children than their parents, apparently now will use the full force of the law to exclude parents from trying to provide proper medical care for their children even on life-and-death matters.

Charlie Gard type cases don’t happen just in the U.K. Recall the Justina Pelletier case where Boston Children’s Hospital refused to allow her parents to get the care for her that she needed because its staff didn’t agree with the (correct) diagnosis of her problem by other competent medical professionals. In both these cases—and others, that have come to be called “medical kidnapping”—we witnessed the shocking scenario of young patients effectively being held as prisoners in medical facilities, which refused to respect the right of their legal caretakers to take them elsewhere for the treatment they needed.

Both the Gard and Pelletier cases—in countries an ocean away from each other—illustrate even more deeply the “closed system” of child protection—not just the lack of appropriate judicial oversight of agencies and institutions supposedly directed to child welfare, but the almost reflexive deference of judges to them. As legal scholars like Professor Paul Chill of the University of Connecticut have written, the playing field is decisively tilted against parents when facing off against the CPS in juvenile courts in the U.S. The Pelletier case strikingly demonstrated that as the juvenile court, at the behest of the hospital, readily transferred custody of Justina from her parents to the Commonwealth of Massachusetts.

What these cases illustrate more broadly is the reality of runaway judicial power, which we are certainly familiar with in the U.S. with a Supreme Court that for decades seems to have identified the Constitution with its own decisions—irrespective of legal and constitutional tradition and history. While that problem has not been as serious in the U.K., the Charlie Gard case brings it into full force, as judges there—supposedly governed by the common law—obviously think they can dispense with parental rights that were viewed as basic under common law.

Another obvious contemporary trend illustrated by the Charlie Gard case—and the Pelletier case before it—is the increasing arrogance, ultra-paternalism, and—most disturbingly—authoritarianism of the elite of functional experts in the West. Not only do we witness the substitution of an ethic of service with one of control, but a blatant unwillingness to acknowledge error. In both cases, the medical authorities involved bungled diagnoses and decisions. It was even worse that they refused to acknowledge it and correct themselves, even when other, probably more competent experts thought otherwise. Worse still, however, were their authoritarian actions—fully backed up, or in the Pelletier case, participated in—by the state in virtually incarcerating their young patients and refusing them the care they needed and their parents the opportunity to help them. They deprived their patients not only physically, but also emotionally and spiritually. Both were not permitted to have the emotional support and succor of their families at home—the hospital would not even allow Charlie Gard to go home to spend his last days with his parents—or their spiritual good taken care of. The Catholic teenager Justina Pelletier was not allowed to attend Mass or receive the sacraments and the Great Ormond Street Hospital wouldn’t allow a noted minister from the U.S. to pray, with the parents’ permission, over Charlie Gard in his hospital room. They cited a “security” issue—by which they probably meant that they didn’t want the minister, known as a religious freedom activist, to have more of an opening to publicly criticize them. Wesley Smith, the American medical ethics expert, recently said that the authoritarian actions of Great Ormond were unprecedented in medical annals.

The extent of the elite arrogance in the Charlie Gard case was seen in the fact that the hospital authorities were so confident that they would prevail—bolstered by U.K. courts and the European Court of Human Rights both giving them a pass—that they didn’t even seem deterred by the bad PR they were facing.

Yet another current reality shown by the Charlie Gard case is the tepidness of political executives in standing up to the overreaching of courts. U.K. Prime Minister Theresa May expressed sympathy for Charlie’s parents’ plight, but indicated it was a judicial matter. Later, it seemed as if she thought the bigger victim was the hospital because of the public hostility directed toward it because of the case. One thinks also here of Governor Jeb Bush in Florida, who in the face of the outrageous actions of Judge George Greer in allowing Terri Schiavo’s husband—who had abandoned her and taken up with another woman—to make the decision to allow her starvation, was apparently unwilling even to consider circumventing Greer to save her. It’s very clear that the norm for political executives nowadays is just to allow, without even a whimper, political authority to pass into the hands of judges and bureaucrats—in some sense, in the U.K.’s socialized health care system, the hospital was an extension of the government bureaucracy—even when the lives of their constituents are at stake. Charlie Gard, Terri Schiavo, and Justina Pelletier could have all been spared what happened to them if the different political executives had acted aggressively to block the courts and to uphold traditional legal norms that the supposed guardians of the law—the judges—were thwarting.

If we are to talk about the law, wouldn’t the appropriate response in the Charlie Gard case be criminal indictments against the hospital authorities for kidnapping and the British equivalent of child endangerment and, since their delay perhaps made it impossible to seek the care in the U.S. that might have given Charlie a chance, manslaughter? Of course, it won’t happen. If the parents had delayed seeking care for Charlie, though, you can be sure the British criminal justice system would have made them the example of examples.

If anything positive comes out of the Charlie Gard case, it might be that it will make the publics in Western countries more attuned to these realities and dangers of an overbearing elite, an advancing pro-euthanasia mindset, and the gross subversion of parental rights and find their voice in resisting them and start demanding that their elected officials to do something about them.


  1. Sure, their little boy was up against incredible odds. He had been diagnosed with mitochondrial DNA depletion syndrome, an extremely rare disease that causes progressive muscle weakening and brain damage, and typically leads to death.

    Still, there was hope. Kids with a very similar form of the disease had responded well to an oral medication called nucleotide bypass therapy, with virtually no side effects. Charlie’s parents had raised all the money they needed for this treatment through a crowdfunding effort. Doctors in the United States were willing to try it with Charlie. All they needed was to transfer him.

    Instead, the family remained in the United Kingdom. London’s Great Ormond Street Hospital (GOSH), where Charlie was being kept on a ventilator, refused to let him go. His parents fought the hospital for eight months in court trying to get him released. At every turn, they were denied. The hospital effectively held the baby hostage…

    Their medical experts believed nucleoside therapy was futile. Charlie, they said, "should be allowed to die peacefully and with dignity."

    Were they wrong? There appears to be some justification for their position. They weren’t obviously advocating euthanasia. The experimental therapy his parents wanted was extraordinary care. If Charlie was close to death, his life support, too, might be beyond the dictates of reason.

    On the other hand, Charlie’s parents did not seem to want anything unreasonable. A July "Statement of the National Catholic Bioethics Center on the Charlie Gard Case" made the point that although extraordinary treatment is not obligatory, the church does not teach that one must reject such treatments, either…

    But perhaps a better answer – one entirely consistent with socialism but going beyond it – was that Charlie fell victim to a mentality that sees human life as possessing only conditional value, rather than intrinsic value.(continued)

  2. (continued)Katie Gollop, who led GOSH’s legal team, aptly expressed this way of thinking in court in early July.

    "There is significant harm if what the parents want for Charlie comes into effect," she told appeal judges, according to the UK’s The Telegraph. "The significant harm is a condition of existence which is offering the child no benefit." She added, "It is inhuman to permit that condition to continue."

    Get that? In her view, human life itself is inhuman; death is humane. Absent certain conditions like health, human existence is an evil.

    Charlie’s parents saw his life very differently. To them he was "a sweet, gorgeous, innocent little boy who was born with a rare disease," a baby they loved to spend time with even though he could barely move or even acknowledge their presence.
    In a word, they saw him more as God sees him, as parents are naturally inclined to do.

    In "Evangelium Vitae" ("The Gospel of Life"), Pope St. John Paul II warned of what he called a "culture of death," which consisted of a "war of the powerful against the weak: a life which would require greater acceptance, love and care is considered useless, or held to be an intolerable burden, and is therefore rejected in one way or another."

    What is the "crime" of the weak in a culture of death? The pope tells us: "A person who, because of illness, handicap or, more simply, just by existing, compromises the well-being or lifestyle of those who are more favored tends to be looked upon as an enemy to be resisted or eliminated" (no. 12; my emphasis).

    On July 28, Charlie Gard passed away shortly after being taken to a London hospice, where his life support was expected to be removed. If Charlie died of mitochondrial disease, then the circumstances of his death bear the marks of very powerful people who believed that Charlie was better off dead and saw to it that he died.

    It also bears the marks of a culture characterized by people who are willing to put others to death – through abortion, euthanasia, infanticide, and the like – because they impede their attainment of pleasure, wealth, or even convenience.

    Wherever the culture of death prevails, parents should be wary that courts and other institutions can and will decide the future of their children irrespective of their own reasonable decisions.
    And only by rededicating ourselves to the grand project of building a culture of life – through prayer, sacrifice and action – can we reverse this ominous state of affairs.

    Make no mistake: what happened in the UK could happen here. In a real sense, we are all Charlie’s parents. And we are all Charlie.