Whose child is Charlie Gard’s?

By Dave Andrusko

Charlie Gard

Charlie Gard

Editor’s note. This story was posted earlier today. Regrettably Charlie Gard has since died. RIP Charlie.

By the time you read this post, the ventilator that keeps little Charlie Gard alive may have already been turned off and—as Justice Nicholas Francis put it so —“inevitably” Charlie will die soon.

According to the Telegraph:

The precise timing of Charlie’s final hours were discussed at a hearing held behind closed doors because of the sensitivity. The judge made an order – the details of which were kept secret – that gives the precise deadline for Charlie’s removal from GOSH and the length of time he can remain in a hospice before his ventilator tube is removed.

However, according to the Daily Mail, the “length” is quite certain:

A hospice has agreed to help but Miss Gollop said British hospices were not ‘licensed or insured’ to take someone with Charlie’s needs overnight, so he would need to die the same day he arrived – in defiance of the parents’ wishes to spend ‘a few precious days’ with him.

On Thursday, we posted a story headlined, “All that was wrong in the coverage of Charlie Gard captured in one story.”  That was a critique of a New York Times story (and by extension many, many stories) which bungled what Connie Yates and Chris Gard tried so hard to accomplish for Charlie, who, were he left in his parents’ care, would turn one year old on August 4.

Today, let me say a few words about peripatetic bioethicist Art Caplan’s handling of the tragic case. He wrote an op-ed for the New York Daily News that ran last Tuesday and a post for Medscape that was recorded on Thursday and posted today.

This analysis could go on for pages, so let me address just a couple of major considerations.

*The Medscape piece is much better, more thoughtful, and much more nuanced than what appeared in the Daily News. Enough said on that.

*Comparing what Connie and Chris attempted to do for their son to a “Jehovah’s Witness [who] refuses a blood transfusion for the child or parents [who] want to try a crazy ‘treatment’ they found at a clinic in Mexico” is not only simplistic, bigoted, and a cheap shot at Connie and Chris, it turns a genuine search for treatment into a parental ego trip.

Over and over, Connie and Chris made it abundantly clear if Justice Francis ever unshackled Charlie, they would go the United States to try nucleoside therapy but only for a limited period of time (three months). In one of the most powerful of many statements Connie made, she told the media

“We aren’t fighting because we cannot bear to lose him. He’s my boy. It’s what’s best for him. … I would do anything for him. He deserves his chance. …We firmly believe that he was sent to us as we are the only ones who look after him. We truly believe that these medicines will work. 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. A chance to keep fighting, he deserves that chance. We are doing this for him.”

By contrast the Great Ormond Street Hospital (GOSH) took the position Caplan no doubt shares

‘It has been and remains the unanimous view of all of those caring for Charlie at Great Ormond Street 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.’

*Caplan maintains

“I think there is a line in the sand which doctors should be able to draw that says, we’ve reached futility. That doesn’t mean abandoning the patient or the family, but it means stopping efforts to try to prolong any treatments that might be causing Charlie to suffer.”

What is the evidence that Charlie is suffering? As far as I can tell, there is none. It’s one of those “it must be true” kinds of conclusion. In the next sentence, note the additional qualification:

If indeed he’s being harmed, hurt, or suffering in any way, then reaching out to try a long-shot experimental procedure isn’t something that doctors at the children’s hospital in London have to agree to.

“In any way” provides Dr. Caplan, GOSH, and Justice Francis the kind of blank check they need to justify overriding Chris and Connie’s desires. My guess—and this is speculation, of course—is that what they are really talking about is something even more vague: “dignity.” They have convinced themselves that Charlie’s “dignity” is being ignored or trampled on by keeping him alive in his condition.

One other consideration which left me scratching my head. From the Medscape post…

To me the standard is, is Charlie or any patient harmed or hurt by continuing care? If they are, then consideration should be given to listening to the doctors and saying we’ve reached the end, it’s time to back off, it’s time to provide palliation, but we’re not going to prolong a life where there’s just suffering and nothing more.

If Charlie isn’t suffering, if he’s not in pain, then I think the parents have more of a case to driving care on; this also goes for anyone who’s taking care of a grandparent or anybody else. If the person isn’t suffering yet and they want to continue care, that’s a different story.

Huh? Not only is there no body of evidence, let alone definitive evidence, Charlie is suffering or in pain, even Julian Savulescu and Peter Singer, two very well-known philosophers who believe in utilitarianism with a vengeance, sided with the parents.

As they wrote, it is a value judgment, not a scientific judgment

whether the pain of three months of intensive care (minimised by sedation and analgesia) is worth taking to gather more information about the prospect of improvement with experimental therapy

Understand, like many others who come down on the parents’ side, if Charlie were their child, they wouldn’t take him to the United States.

But the point is, Charlie isn’t their child! Nor is he Justice Francis’ child or GOSH’s child.

He is Connie and Chris’s baby boy and their devotion to their son will be remembered as long as unconditional love is honored.

As the events of this sad day unfold, we will keep you updated as best we can.