The agonising case of Charlie Gard, the 11-month old baby dying from a rare form of mitochondrial disease, is edging towards a no less agonising conclusion.
Today, his parents agreed that he should be transferred from Great Ormond Street hospital in London (GOSH) to a hospice to spend there his final period of life.
The hospice was a compromise. The parents have been fighting the plan for their baby’s end of life care just as they had fought the decision that he should no longer be kept alive. They wanted to bring Charlie home to die. The hospital refused to agree because of the difficulties of providing the particular ventilation and other procedures for Charlie at home, and the potential for causing him yet more distress or even causing him to die before he got home.
The court that has been attempting to arbitrate this heartbreaking dispute has set a deadline of noon tomorrow for the parents to find a team that can support Charlie for the days the parents want to spend with him at the hospice. Otherwise he will be taken off his life support shortly after being transferred.
The parents deserve only the most profound sympathy. Their unremitting rage at the hospital has to be seen in the context of mind-altering grief. In such a state, however, it is sometimes not possible to make decisions that really are in the best interests of their child. In this case, moreover, it is impossible to avoid the conclusion that their stress has been hugely compounded by one of the most cruelly ill-conceived campaigns of recent times.
The parents finally agreed to allow Charlie to die having seen from his most recent scan and the opinion of American neurologist Professor Michio Hirano, whose experimental nucleoside treatment (NBT) they hoped would save him, that any such treatment was hopeless. Yet in her emotional statement to the court Charlie’s mother Connie Yates implied that if he had been treated earlier he could have been saved.
Clearly, no-one can ever know if that might have been so. But what we do know is that at no stage was any credible evidence brought forward to show that Charlie’s brain damage was not irreversible, as the hospital told the parents it was months ago, so much so that any further treatment was futile. Nor was there ever any evidence during this time that Professor Hirano’s or any other treatment would ameliorate his condition.
The statement put out by the hospital after Ms Yates’s emotional words is worth reading in full. It addressed head on the key questions posed by the parents and their supporters: why not give Charlie at least the chance of further treatment? What did he have to lose? And if he had been treated months ago, would this terrible situation have been avoided?
In its answer, the hospital noted once again that no animal or human with Charlie’s precise disease had even been treated by NBT. After Charlie had suffered seizures before last Christmas, the entire treating team formed the view that Charlie had suffered irreversible neurological damage and that, as a result, any chance of benefit from this treatment had departed.
Charlie’s parents, however, refused to believe his brain was damaged. There lay the root of the problem. For do all these people demonstrating outside the court and shrieking that Great Ormond Street hospital were “murderers”, or writing ignorant and intemperate op-eds in the American media declaring that only the parents had the right to decide what was in the best interests of their child, really believe that parents know better than neurologists about damage that has been done to the brain?
The hospital statement contains two particularly devastating passages. The first leaves the reputation of Professor Hirano in shreds.
“Professor Hirano (“the Professor”), whose laboratory research has an international reputation, is very well known to the experts at GOSH and he communicated with them about NBT treatment for Charlie at the very end of December. In January, GOSH invited the Professor to come and see Charlie. That invitation remained open at all times but was not taken up until 18 July after being extended, once again, this time by the Court.
“When the hospital was informed that the Professor had new laboratory findings causing him to believe NBT would be more beneficial to Charlie than he had previously opined, GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.”
That claim of new research evidence was why the parents returned to court and re-opened the case. The judge said he was eager to hear of this new evidence and hoped it would enable him to reverse his previous ruling. The GOSH statement, however, continues:
“It was, therefore, with increasing surprise and disappointment that the hospital listened to the Professor’s fresh evidence to the Court. On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts all of whom had taken the opportunity to examine him and consider his records) or even read the Judge’s decision made on 11 April.
“Further, GOSH was concerned to hear the Professor state, for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie. Devastatingly, the information obtained since 13 July gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.”
In other words, there never was any hope for Charlie – and the claim that
fresh research evidence provided some new hope was wholly without foundation and came from someone who had never even examined the child.
But here’s the really wicked thing about all this. The parents were reinforced in their refusal to accept this tragic situation, and the whole court process pointlessly prolonged, because of the pressure largely emanating from activists and media on the American political right (along with right-to-life campaigners) screaming that a baby was about to be killed by a socialised health care “death panel” enforced by the British government. This campaign led the parents to believe that such pressure could change the court’s mind. And so the parents were reinforced in their refusal to face reality.
The commentary emanating from America, however, was staggeringly ill-informed. The website American Thinker, for example, ran one hysterical piece after another. Thus the case represented “a perfect crystallization of the full heart and soul of socialized or ‘single payer’ health care”, a “tyrannically impersonal “medical system” in which “the individual human being is property of the State”.
“Little Charlie Gard appears to be under a death sentence courtesy of Great Ormond Street Hospital and the British Courts” in “a totalitarian state where the courts decide whether my child can live or die, where they can withhold medical treatment as and when they decide, where they can prevent treatment in another nation, where the rights of the individuals involved can be thrown on the floor and trashed like so much refuse”
…“the almost inhuman indifference to the plight of the parents by the Great Ormond Street Hospital, who insist that the parents should have no hope of improvement in their son and acquiesce in his death”…
“progressive death cult according to which individual lives are mere variables in an abstract calculus based on social utility and budgetary value.” And so on, and on.
On Liberty Unyielding, a writer decided that the case reflected the belief she thought was expressed by a British ethicist that “the authority of government over human life is itself a first principle, so inviolable that everything else must yield to it.”
Even the normally intelligent Wall Street Journal decried “a system that elevated a judge’s opinion about what was best for Charlie over loving parents. Few should be surprised, because the brutal reality is that when the state is responsible for nearly all health spending it inevitably takes responsibility for life and death decisions too.”
But this case had absolutely nothing to do with the state or the government. This was not Charlie’s parents v the state. This was Charlie’s parents v the medical profession, a conflict in which the courts were brought in as the dispassionate arbiter in the best interests above all of the sick child.
This was another thing the American commentators seemed incapable of grasping. In the US, the courts are highly politicised with judicial figures appointed by the state. But in Britain the courts are truly independent, representing law and justice. The state does not tell the British courts what to do; the British courts in fact hold the state to account. So the idea that the courts were enforcing state diktat in this case was totally ridiculous.
Nor had this anything to do with “socialised medicine” or the NHS system. This was purely a case where doctors were making decisions absolutely in line with medical ethics, which hold that causing a patient any pain or distress from treatment is only permissible if there is clear benefit to the patient from that treatment. In this case, there was not.
And this fact was reflected in the most devastating passage in the hospital’s statement.
“At the first hearing in Charlie’s case in March, GOSH’s position was that every day that passed was a day that was not in his best interests. That remains its view of his welfare. Even now, Charlie shows physical responses to stressors that some of those treating him interpret as pain and when two international experts assessed him last week, they believed that they elicited a pain response.
“In GOSH’s view there has been no real change in Charlie’s responsiveness since January. Its fear that his continued existence has been painful to him has been compounded by the Judge’s finding, in April, that since his brain became affected by RRM2B [his genetic disease] , Charlie’s has been an existence devoid of all benefit and pleasure. If Charlie has had a relationship with the world around him since his best interests were determined, it has been one of suffering.”
That is the most terrible point of all. Charlie may have been in pain and distress. That above all was the hospital’s fear; that above all weighed particularly heavily on the judge’s mind. If that was indeed so, then every day this case has dragged on has meant that this sick baby might have been caused yet more suffering.
If so, the parents in their great distress cannot be blamed. The people who should consider what harm they may have done here are all those who, through giving the parents such false hopes, so cruelly embedded them in their denial of reality.
Whether or not Great Ormond Street hospital was right or wrong in its diagnosis, its medical staff were only ever concerned with one thing: the best interests of their tiny patient. For this they have been subjected to vilification and death threats and portrayed as inhumane and murderers. This is unspeakable.
I write a great deal about the ideological bullying of the left, the lies published by left-wing media and the inhumanity and irrationality of so much allegedly progressive thinking. But I have never witnessed such concentrated ignorance, arrogance, stupidity and unthinking cruelty as has been displayed by the American political right over the tragic case of Charlie Gard.
The last word should be given to Great Ormond Street hospital:
“All of GOSH’s thoughts go with Charlie and his mother and father – the hospital wishes each of them peace in their hearts at the end of this day and each day to come”.