I'm very surprised that there hasn't been a topic devoted to the tragic case of the infant Charlie Gard. I've searched for one but with no success. I've no desire to start a new one if a thread has already been started, so if one has I would appreciate being directed to it.
First and foremost this is a heartbreaking tragedy that has to have devasted the child's parents, but I do think it raises important issues concerning the role of government in our lives.
For those not familiar with the story, Charlie Gard was a British infant born in August 2016 with mitochondrial DNA depletion syndrome, a rare genetic condition that causes irreversible brain damage. It took away his ability to see, hear, move or breathe on his own.
At some point in Charlie's young life a dispute arose between his parents and the Great Ormond Street Hospital ("GOSH") where he was treated from a period of about two weeks after his birth until he died, concerning the treatment he would receive. (Note: He may have recently been moved from GOSH to hospice, but I'm not certain about this, however I think it irrelevant to the discussion)
This is a fairly complex story so you may not wish to rely on my brief summary. There are numerous articles on Charlies plight and the legal dispute available on the web.
Briefly, GOSH determined that there was no hope of a recovery and that all life sustaining treatment should be discontinued and the infant be allowed to die. They concluded that Charlie was in pain and distress and given the hopelessness of the case, the most humane action would be to end all efforts to sustain his life.
The parents believed that there was an experimental treatment available in the US that might cure their son and they wished to take him to an American hospital that had advised them that they were willing to treat Charlie.
The Gards were able to secure through private donations enough money to cover all costs associated with moving Charlie to the US and his undergoing the treatment, so this is not
a matter of any health insurance, private or national being asked to pay for a treatment with highly questionable chances of success.
GOSH disagreed with the parents' intentions and took the matter to the court to prevent the Gards' from moving Charlie from their facility to the US. The British courts consistently ruled in the favor of GOSH and the matter was taken European Court of Human Rights, which refused to hear the case and so the Gards' legal remedies were exhausted.
Eventually the parents agreed to remove Charlie from his ventilator and as noted he just passed away.
The case received international attention with both Pope Francis and President Trump advocating for all efforts to be made to continue Charlie's life, although Trump's was more implied than explicit.
There are questions about whether or not the experimental treatment actually offered any hope at all and if the American doctor that first communicated with the Gards about it, behaved in an entirely ethical manner.The Gards believed up until the end that if Charlie had received the treatment early enough (when they originally wanted to move him to the US) there was a chance that he might have been saved.
For the purposes of this discussion I think we can refrain from a debate upon the chances of the procedure to treat Charlie. Suffice it to say, I would suggest, that British medical experts involved in the case believed it had either no chance or such a remote chance that it wasn't worth considering. On the other hand there were medical experts in the US who thought differently but never suggested that there was anything but a low chance of success. At some point before Charlie died it became moot because all experts agreed that, during the course of the legal battles, he had suffered irreversible brain damage and if the treatment ever had a chance of success it existed no longer. The parents, in the end, acknowledged this to be the case.
This was a case of parents wanting to take whatever slim chance might be available to them to save the life of their son, and the government interceding, ostensibly, on behalf of the child and refusing to allow them to do so. Again, it had nothing to do with whether the UK's national health care would be expected to fund any costs associated with the treatment.
I do not mean to suggest that GOSH was insincere in their belief of what the best coarse of action was for Charlie or that they were in anyway cavalier about their decision or insensitive to the feelings of the parents, but I do think that at some point professional heels might have been dug in and a good faith dispute with the parents may have expanded into an unnecessary one with American doctors. Whether this was the case here is relevant to the larger question only to the extent that it could possibly be true. In other words is it possible that the government's decisions in cases like these could be influenced by factors external to a pure consideration of the patient?
There was never any doubt expressed that the Gards were motivated by anything other than sincere and complete love and concern for their son and so the Big
question is, in such cases, who gets to decide? The parents whose concern and love for their son obviously supersedes that of the State, or the State who is able to view the matter more dispassionately?
What would have been the harm done in allowing the Gards to take Charlie to a US hospital? GOSH had to understand that the Gards weren't going to just give up and go along with their finding, and no matter how accelerated the court proceedings might have been given the nature of the appeal processes there was no way the matter could be legally resolved overnight or in a matter of days or even weeks. In reality it took months during which Charlie could have been moved to the US and received the treatment. Does this even matter?
Even if we assume that due process might only take a matter of days and not months, is it appropriate for the State to overrule the decision of a sick child's parents who want to get him additional treatment? This was not the case of the State needing to intercede to make certain that a child gets
appropriate treatment, instead it was a case of the State telling the parents you do not have a right
to hope your child can recover and to act on that hope.
Note: If anyone believes I have misstated or left out any important facts concerning this case, please comment accordingly