Charlie Gard, Connie Yates, Chris Gard and the rule of “experts”

By Dave Andrusko

“The question of stopping Charlie’s life support was a value judgment, not a medical determination. The doctors didn’t insist on stopping treatment because it was not working, but because it was.” — Wesley Smith

I read this statement yesterday as part of Wesley’s terrific column, “The High Cost of Charlie Gard Coercion,” which we reposted. But for some reason it was not until today when I re-read Ross Douthat’s New York Times op-ed ”Charlie Gard and the Experts” that the full significance sunk in.

We could look at the “treatment” in several ways. To be clear, with his grave medical condition, Charlie Gard was highly unlikely to live a full lifespan.

But the question that may never be answered (because the hospital and presiding judge insisted what they were doing–over the parents’ vigorous objections–was in Charlie’s “best interests”) was what could have been done for Charlie back in the earlier part of the year had not the London-based Great Ormond Street Hospital already concluded (a determination parroted by Justice Nicholas Francis )

that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare.

That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life.

It is essential that we don’t overlook what Dr. Michio Hirano concluded, according to Connie’s statement to Justice Francis. That is already being lost:

“The American [Dr. Hirano] and Italian team [led by Dr. Bertini] were still willing to treat Charlie after reviewing the MRI head scan from July 2017 as they still felt that there was a chance of meaningful improvement in Charlie’s brain.

Then why not go ahead with the nucleoside therapy? Why had Charlie reached “the point of no return”?

However, due to the deterioration in his muscles, there is now no way back for Charlie. Time that has been wasted. It is time that has sadly gone against him.”

And why was treatment not commenced in January or April this year?

Because, Connie said, “Charlie was found to have ‘irreversible brain damage’ and treatment was considered as ‘futile’. Dr Hirano and Dr Bertini, together with other internationally renowned paediatric neurologists have now reviewed Charlie’s MRI’s and EEG’s which were performed in January and April respectively, and they have confirmed that these MRI’s and EEG’s showed NO actual evidence of irreversible brain damage.”

As we discussed Monday, Connie went on to make this hugely important point:

“Unfortunately Professor Hirano did not have access to the raw data and he based what he said in April on reports. We did not have access to these second opinions before the initial trial [in which Justice Francis ruled Charlie should be “allowed to die with dignity], hence why we are where we are today. Had we had the opportunity to have raw data of the MRIs and EEGs independently reviewed, we are convinced Charlie would be on treatment now and improving all the time.” (My emphases.)

Dr. Hirano’s “reward” for not having prior access is to be accused of giving the family “false hopes.”

Douthat perfectly captured the bottom line:

To overrule the parental judgment on how to handle an infant’s looming death should require not merely disagreement but real evidence of cruelty or incapacity — something nobody claims is present with the Gards.

Exactly.

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