Let’s Listen for a Minute: Thoughts on the Charlie Gard Debate

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People around the world heard the heartbreaking tale of Charlie Gard and instantly began forming opinions. The infant, who was born with a genetic defect called Mitochondrial DNA Depletion Syndrome, became the subject of numerous news stories and angry rants as his case wound its way through the British legal system. No matter what conclusions people reached, it quickly became clear that we all had more opinions than knowledge.

The crux of the case had to do with whether Charlie’s parents would be allowed to take him to the United States for an experimental treatment. Charlie is currently on life support as a result of his illness. The controversy arose when his parents sought to have the hospital release him into their custody so that they could attempt to secure the treatment for their son. The UK hospital had previously determined that nothing could be done for Charlie, and obtained a judgment from the court allowing them to remove him from life support. A battle ensued as Charlie’s parents sought to keep Charlie on life support long enough to pursue the experimental treatment.

Ultimately, as reported by CNN, the Gard’s withdrew their legal contest after the latest medical evidence showed that the proposed treatment would have little, if any, effect on Charlie’s advanced disease. As of this writing, the Gards are attempting to persuade the court to allow them to take their child home to live out his final moments.

As we often see during these highly public fights involving terminal illness and life support, public opinion surrounding Charlie Gard’s case became incredibly polarized. Some viewed the right of Charlie’s parents to fight for treatment as paramount. Others favored the hospital’s prerogative to withdraw life support from what it had considered to be a terminal patient. Both sides have fair arguments, and I cannot attempt to come to any useful conclusion within the bounds of one blog post.

However, this may be a instance in which both sides have such good points that we just need to step aside and listen. That is why these problems are incredibly difficult. It’s very easy to say “Can’t they just be cool and let the parents take their son to the U.S. for treatment?” But it’s also fair to acknowledge the fact that families are often highly reluctant to take their loved ones off life support if there is even a one-in-a-million chance that a radical treatment could save them. Even though we would all jump at these odds when presented with the alternative, it puts the medical system in a tough spot if they comply with all of these wishes. If hospitals provide resources, and all doctors involved have agreed that a patient is terminal, when is it moral for a hospital to discontinue life support?

These questions involve highly technical issues of law and medicine. Further, they require experience with a patient that very relatively few people have ever seen in person. Yet, we all feel the need to violently opine on a matter that we do not understand. Even the vast majority of doctors and lawyers have not read Charlie’s file. Unless we are actually familiar with the case, how can any of us say what the definitive answer is? We don’t know his lab values, and most of us don’t know anything about his disease.

I am certainly nowhere near qualified to give an opinion on Charlie Gard’s case. However, I do realize that problems of medical ethics are rarely easy. It’s good to listen to the opinions of experts, as those will likely be the next best thing to the opinions of the actual treating physicians. Apart from that, it’s about time we acknowledged how little we know. We need to see how important it is to sit back and take in the facts rather than jumping to conclusions based on headlines. If we don’t, we risk looking like the fools we become when we ignore the complexities of a difficult social issue.