Were We Wrong About Charlie Gard?
Many of us in America protested the treatment of the late Charlie Gard. Some friends in England tell us we’ve been highly misinformed along the way. Some even claim we have done much more harm than good.
If so, we need to do some serious soul searching. But are these charges true? Were we wrong about Charlie Gard?
Respected British journalist Melanie Phillips said this: “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 “case had absolutely nothing to do with the state or the government,” she argues. “This was not Charlie’s parents v the state. This was Charlie’s parents v the medical profession.” The case is “a conflict,” she says, “in which the courts were brought in as the dispassionate arbiter in the best interests above all of the sick child.”
So, the problem was neither socialized medicine nor judicial “death panels.” The problem was that the doctors in a world-acclaimed children’s hospital judged that Charlie had suffered irreversible brain damage. His parents were unwilling to accept that, buoyed by false hopes from an American professor whose experimental treatments could allegedly help.
More to the Story
But Phillips tells us that, here too, there was more to the story.
This is from the hospital’s official statement: “In January, GOSH [the Great Ormond Street Hospital] 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.
The hospital received information that the Professor thought NBT [the experimental drug] could do Charlie more good than he had previously. At that point, says the statement, “GOSH’s hope for Charlie and his parents was that that optimism would be confirmed.”
Specialist Not Well Informed and Objective?
But, the statement 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 … he [had] not visited the hospital to examine Charlie.” That was cause for concern, but there is more. “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).” He hadn’t even read the Judge’s decision made on 11 April.
The statement continues: “Further, GOSH was concerned to hear the Professor state… 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.”
“Never Any Hope”
Phillips then summarizes the tragic situation, “In other words, there never was any hope for Charlie…. 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.”
For Phillips, “the really wicked thing about all this” was in “pressure largely emanating from activists on the American political right…screaming that a baby was about to be killed by a socialised [British] health care ‘death panel.” Because of that pressure, “The parents were reinforced in their refusal to accept this tragic situation.” Further, “he whole court process [was] pointlessly prolonged.” The parents were led to believe the pressure could change the court’s mind. “And so the parents were reinforced in their refusal to face reality.”
Not Just about the NHS
How should we assess all this – aside from with added heartbreak?
How should we assess all this – aside from with added heartbreak?
First, I’m sure that Phillips and my UK friends understand their system far better than I do. That was never in question.
I wrote about this last week, referencing England’s “health care system that refused to allow him to receive him any experimental treatment.” When I did so I was careful not to mention the NHS, the National Health Service.
Yet I also wrote of “what Charlie’s case says to us – no, shouts to us” regarding parents or individuals urgently seeking treatment for children or themselves. The courts and government should not — cannot — stand in their way,
So, if we simply blamed this tragic situation on the NHS, we would be mistaken.
Why Were the Parents Not Allowed to Seek Treatment?
Second, I still don’t understand how the hospital could stop the parents from seeking other medical treatment for which they had received funding. That remains a major question for me, and one that seems to point to a difference between the UK and the States.
One of my Scottish friends told me what would have happened had the parents been treating Charlie in a private hospital. The results would have been the same. That, to me, still forces me to wonder: Who gave the hospital the power to make that decision and overrule the parents?
What Does This Say About Human Life’s Value?
Third, I believe the hospital doctors were motivated by great compassion for Charlie and deep concern for his parents. Still there remains this troubling statement made to the appeal judges by Katie Gollop, who led the hospital’s legal team. “There is significant harm if what the parents want for Charlie comes into effect. The significant harm is a condition of existence which is offering the child no benefit.”
Reading the statement from the hospital more fully, the question is only intensified.
She added, “It is inhuman to permit that condition to continue.”
I wrote about this as well, asking, “Who else might fall into that category? Other handicapped children? The elderly with severe dementia? The mentally ill? What other ‘conditions of existence’ should be terminated as well?”
This remains a major question for me, a question not answered by the Phillips’ article. To the contrary, reading the statement from the hospital more fully, the question is only intensified. As stated, after a brain episode in April, “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.”
The hospital felt that the treatment would not help. They were concerned it might make things worse. They felt Charlie was suffering now and could be suffering more. Therefore they insisted that he not receive such treatment.
Back To Where We Started
Aren’t we, then, back to where we started? Aren’t these some of the very issues we’ve been discussing all along? Was this the hospital’s decision to make or the parent’s decision to make?
I’m sure that, in many ways, Melanie Phillips and I are on the same side. I’m sure that, in the end, everyone involved tried to do what they felt was best for Charlie. I would agree that some of us here in America went too far in pointing the blame at the NHS specifically or socialized health care in general. And to the extent any Americans vilified health-care givers who cared deeply about Charlie, they were mistaken.
At the same time, our biggest questions remain. 1) Who gave the hospital the power to stop the parents from getting experimental treatment for their children? And: 2) Who gave the hospital (or courts) the power to decide what “condition of existence” is worthy of further care?
Finally, I have a reminder Melanie Phillips, whom I respect. If any of my friends here in America were too zealous, please remember that we are staunchly pro-life. The situation remains troubling to us, even after reading your article. We’ve seen what has happened in Holland and elsewhere with what appear to us to be related decisions.
Perhaps our zeal was not so misguided after all? Perhaps it was even commendable, even if, at times, it was not presented with perfect accuracy by some? Perhaps it’s not only we Americans who have blind spots?