Charlie Gard is now synonymous with a fierce legal and ethical debate since his court case gained international attention in mid-June. His case captured headlines and elicited strong responses from many leaders. After months of tense court battles, the case’s final hearing ended Wednesday, during which the judge presided over the decision concerning where Charlie would breathe his last. Charlie passed away Friday in hospice, one week before his first birthday.
Charlie Gard was a British baby born in August 2016. He was diagnosed with a rare genetic condition known as mitochondrial depletion syndrome which left him immobile and unable to breathe unaided. Parents Chris Gard and Connie Yates heard of an experimental treatment that might help their son, and so they used crowdfunding to raise money for the trip to the United States. However, they became embroiled in a massive legal battle that reached the highest European court fighting while for the right to make treatment decisions for their baby when the Grand Ormond Street Hospital, where Charlie was receiving care, denied their request.
This case drew a line in the sand, causing people to see it as a very distinctly black and white issue. Many chose sides as the case progressed, furiously arguing either for the right of the courts to decide on Charlie’s behalf or demanding that that right belongs to the parents. But looking through the numerous facts of this case, we start to see this issue is not a simple “good vs bad” but actually a grey area.
Two experts weighed in on the case for us. Jonathan Montgomery is a Professor of Health Care Law at University College London and sided with the courts making decisions. Patrick Coffin is an author and long-time Catholic radio show host who wrote on the case in light of a tragically similar situation concerning his daughter a few years ago.
The debate centered over who should have the right to make decisions concerning Gard and his welfare. Montgomery explained the British law system as relating to children’s and parents’ rights.
“In the United Kingdom, we’re clear that children’s rights are separate from parental rights, so if you have a situation where the doctors caring for a patient believe that the parents are making decisions that are contrary to the child’s interest, then the child has the right to have that adjudicated before a court”
While this may be the law in Great Britain, Coffin says that approach actually undermines parental rights.
“I do sympathize with the hospital as well, I don’t think its just clear cut good versus evil, but obviously when you’re a parent and its your child, the question of who decides what the next right step will be for the child’s care I believe should be up to the parents.”
Coffin also explained how he took issue with some terms people used when talking about Charlie.
“Whenever I hear “meaningful life” or “meaningful existence,” I always cringe a little bit because that brings up the question “according to whom?”
Much of the debate focused on an experimental treatment the parents wanted for Charlie. Montgomery explained the court’s reasoning on why they wouldn’t allow the baby to receive the treatment
“This treatment was tricky, and I think it was a finely balanced decision, because the treatment itself is not particularly intrusive, but Charlie’s life, according to the evidence the judge heard was one which he was like to be feeling some significant pain, although that is not how the parents saw it. Having reached that conclusion, the judge really needed to identify some prospect of success, before it was fair to Charlie to prolong his suffering and distress.”
Coffin saw a different angle, focusing on the money the parents raised to bring Charlie to the U.S. However, that money turned out to be of no help without the ability to make decisions on their son’s behalf.
“With socialized medicine in England, the relationship between the parents and the doctors or the patient and the doctors is of a slightly different cast than it is here in the states. Here in America, we want to treat treat treat as long as you can afford it. And I think this is what galls so many people is that Charlie’s parents raised almost two million pounds on a Go Fund Me campaign.”
The media response to the case also helped to fuel the polarized response. Great Ormond Street Hospital staff, who cared for Gard, are receiving death threats and backlash from numerous places.
Montgomery said the family probably suffered from the attention, but that the hospital should be accustomed to dealing with delicate issues like this one.
“I suspect it has made it more difficult for the family to deal with the decisions their facing because there has been such intense scrutiny. I’ve no doubt its been uncomfortable for the hospital, but that is the hospital’s job to the best for Charlie, and they won’t find these decisions easy, and they don’t necessarily need to be comfortable for the hospital.”
Coffin saw the media’s involvement as both a help and a hindrance.
“I think that is a classic both and. I think the answer is yes, it has been both a help in terms of focusing on this helpless baby.”
“I think its helped the cause of life and the protection of life by focusing on that sweet little face of his and the desire of the parents to keep him.”
But while there were positives to the media coverage, Coffin perceived an unusual tone coming from the media.
“On the other hand I detect a lot of fear in the coverage. … Seeing someone in that situation is very frightening and the hospital staff as somehow menacing. Not to mention the fact that not a lot of details were given in some of the responses, especially on social media.”
While the media painted hospital officials as the “bad guys” in this story, Coffin stressed that the parents have some part in this too, especially as relates to facing the reality of having a terminally ill child.
“And that’s one of the reasons I don’t think its good on one side and evil on the other. I don’t know what their motives are.”
Coffin referenced the movie Dumb and Dumber wherein Jim Carrey’s character was turned down by a girl he really liked. But, when told he had a 1 in a billion chance with her, he jumped on it, because no matter how slim, it was a chance. Coffin thinks Charlie’s parents are in a similar mindset.
“I think the distance between A and B, where A is your child is happy and safe and healthy and B is your child is going to die, is a very, very long distance. And some parents come to that realization in different ways and in different time clocks than others.”
With the amount of attention Charlie received, some wonder where the close of the case leaves us.
Coffin felt it left everything back at the starting line, but did find some positive parts within the tragedy.
“I’m not sure how further ahead we are, except that it was lovely to see so much attention lavished on this little boy. And I detected a lot of sympathy for keeping him a pain-free and as healthy as they could given the circumstances.”
Montgomery stated that this case changed no British laws and didn’t seem to think decisions made here would have a lasting impact on future cases.
“I think the case has become an example of some deeply-rooted divisions between different approaches to clinical care. I don’t think it has altered the position Charlie is in.”
“So its become a set type of case that depends entirely on scientific evidence.”
Undoubtedly, this case has caused tension and division around the world, with people from all walks of life lining up one side or the other. But, as Coffin and Montgomery point out, this is not a clear and simple case, and a proper evaluation of it requires knowledge of the facts and their real life application. While it is crucial to fight for the best possible outcome for a child’s life, it is also imperative to consider who should be making these types of decisions. ~ Sarah Schutte
