A sad ending to a sad story
Until today I hadn’t written about Gard’s parents’ legal battle to be allowed to fly him to the US for extraordinary experimental treatment for a very rare and destructive genetic disorder. The main reason I haven’t dealt with it till now is that I think the issues are very clear there’s almost nothing to discuss, and that just about everyone here would agree: the court had no business meddling in this in the first place.
When the government enters the medicine business—and in Britain, it’s much more heavily involved than it is here, even with Obamacare—the government increasingly controls medicine and how it is dispensed. But the distinguishing factor in this case was that, although infant Charlie is in a London hospital, his parents had raised enough money to pay for his US treatment and therefore it would seem the British government shouldn’t have had any say in the matter unless the parents had been planning to do something really outrageous and clearly harmful.
The case for allowing Charlie Gard’s parents to choose seems fairly cut and dried to me—but not to the British courts, where the parents have been involved in a five-month court battle to be allowed to make this decision:
On 24 February 2017, the hospital applied for mechanical ventilation to be withdrawn, but his parents Gard and Yates were opposed to this, and wanted to take the child to the United States for an experimental treatment. The case was heard at the High Court with a legal team representing the parents pro bono. On 11 April, Mr Justice Francis ruled that it was in the infant’s best interests for his treating clinicians to withdraw mechanical ventilation and provide him with palliative care only, maintaining his dignity. The judge noted that the US doctor proposing the nucleoside treatment said that it was “very unlikely that he will improve” with the proposed experimental therapy. He also noted that the treatment proposed had not been used in patients with the same mutation as Charlie Gard, nor with patients with encephalopathy, as he had. There have been no published case studies of the proposed treatment in any patient group
These are reputable physicians, however, and Charlie’s diagnosis is so very rare that it’s not the least bit surprising they have little or no experimental data. That’s no reason to deny the parents the right to make the decision. And I don’t see why it’s any more “dignified” to die with or without a ventilator in Britain versus dying with or without a ventilator in the US after a course of treatment in a reputable hospital.
This is the way today’s decision was made:
On 7 July, the hospital applied to the High Court for a fresh hearing, citing that this was “in light of claims of new evidence relating to potential treatment”, referring to possible new evidence on the benefit of nucleoside treatment…
Hearings took place on 13 and 14 July, and in the latter hearing the US doctor, Michio Hirano of Columbia University, agreed to be identified, and the judge ruled that Hirano could evaluate the child and consult with the hospital staff; the judge said he would issue a new ruling on 25 July, after he had received and reviewed Hirano’s report.
On Monday 24 July, the attorney for Gard and Yates appeared in the High Court and withdrew the parents’ request to fly their son to the US and their challenge to withdrawing mechanical ventilation and giving him only palliative care. The attorney said that Hirano, after examining the child and consulting with GOSH staff, was no longer willing to offer the experimental therapy because he saw no chance of it working due to irreversible damage caused by the disease. The attorney said that on 21 July Gard and Yates had decided to stop fighting and had spent the weekend with their son.
This is the sad situation, but at least Charlie’s parents were able to make the decision themselves based on the advice of a physician they trusted, one who was willing to treat their son if he felt there was any hope whatsoever. Meanwhile, of course, they had lost a great deal of precious time while the courts droned on.
When I first read that news, I thought that it probably was the case that the child could not have been saved even if he’d had access to the treatment when they first were able to afford it. I still believe that is highly likely to have been true.
But even if there was a 1% or less chance, it was the parents’ right to take it, and they missed that chance. Here is the relevant portion of their statement:
The American and Italian team were still willing to treat Charlie after seeing his recent MRI and EEG perform last week, but there is one simple reason why treatment cannot now go ahead and that is time. A whole lot of time has been wasted.
We are now in July and our poor boy has been left to just lie in hospital for months without any treatment whilst lengthy court battles have been fought.
Tragically having had Charlie’s medical notes reviewed by independent experts, we now know had Charlie been given the treatment sooner, he would have had the potential to be a normal healthy little boy.
Despite his condition in January, Charlie’s muscles were in pretty good shape and far from showing irreversible catastrophic structural brain damage.
Dr Hirano and other experts say his brain scans and EEGs were those of a relatively normal child of his age…
Charlie’s been left for his illness to deteriorate devastatingly to the point of no return.
This has also never been about ”˜parents know best’.
All we wanted to do was take Charlie from one world-renowned hospital to another world-renowned hospital in the attempt to save his life and to be treated by the world leader in mitochondrial disease.
We’ll have to live with the what-ifs which will haunt us for the rest of our lives.
I know I repeat myself, but I have to say this is incredibly sad. My opinion of the court’s role is that it has been outrageous. These parents weren’t going to remove the child from a hospital offering some hopeful treatment to take him to a quack somewhere. They were proposing to use their own money to take him from a hopeless situation to one that offered him (and them) an infinitesimal chance of hope, both in “world-renowned” hospitals.
It should have been their right as parents and as human beings to make that decision in a timely manner.