Medical Decision-Making In the Tragic Life of Charlie Gard

Charlie Gard is a nearly 1-year-old baby born with RRM2B encephalomyopathic mitochondrial DNA depletion syndrome — a rare genetic disorder with no cure. Those with the mutation live at most into early childhood with a multitude of life threatening conditions (lactic acidosis, ammonia build up, heart abnormalities). Charlie suffers from seizures, cannot independently breathe. He is also blind and deaf. Great Ormond Street Hospital (London) and Charlie’s doctors believe there is nothing more medically that can be done to benefit him and requested to remove his life sustaining treatment. Connie Yates and Chris Gard, his parents, believe that there is a chance of a miraculous cure in an experimental nucleoside treatment in the United States, even though the technique has never been tried for this condition.

Despite the uproar in the United States, the reality is that the outcome of this case has no legal bearing on what happens in the U.S. In fact, the loudest voices against the European courts and the hospital’s decision come from the U.S. In fact, the U.S. House of Representatives Committee on Appropriations just voted on an amendment that would grant Charlie permanent residency in the U.S. Does this mean that other countries are not interested in Charlie’s case or does it mean that the U.S. is exporting its values and beliefs in a misplaced sense of moral universalism — that we are right and everyone else is wrong.

The case has gone through the British courts and the European Court of Human Rights, all of which agreed with the hospital. They declared that prolonging Charlie’s life would be “inhumane and unreasonable.” The courts believed that the experimental treatment in the US would be futile and could cause Charlie much suffering. Under British law, when parents and physicians disagree on treatment, the courts normally intervene and are the final decision-makers. Unlike in the US, the highest value is the best interest (benefit) to the child rather than parental rights to make decisions for their child. Parental autonomy for medical decision-making has more stringent limits in the UK than in the US.

One must remember that in the US, there is not a right to health care whereas the UK does have a right to health care. Even then, not everyone receives all of the healthcare they need, nevermind that they want. In echoes of the Terri Schiavo case, this family’s tragedy is being turned into political fodder. Donald Trump sent a Tweet saying that the US would “be delighted” to help Charlie. The Pope has asked that the parent’s wishes be followed. A Vatican children’s hospital offered to accept Charlie after being contacted by Connie Yates; however, there are legal obstacles to such a transfer. British politicians and scientists have not all agreed with the courts and doctors. People in the U.S. are making a political issue around this baby, proposing to spend resources and time to save one dying baby that they would not spend on their own citizens.

Some pundits have stated that the case is an example of the dangers of “socialized medicine” claiming that the state not wanting to pay for Charlie’s care is the problem. The courts stated that their decision to withdraw support had nothing to do with cost but was about the child’s best interest. The parents have been aggressively fundraising to pay for the trip and treatment in the US. Through GoFundMe, they have raised over £1.3 million (about $1,680,000) but that number is low as the parents are also collecting money via direct bank transfer and Paypal.

“Bioethics” cannot make medical decisions — only physicians, families and courts can do that. And bioethics has not created a culture of death, it has created a culture that allows for varied perspectives to be honored including those that do no align with stringent (and often protestant religious views) that every moment of “life” no matter it’s quality (or cost to others both emotional and financial) must be pursued. Mainstream bioethics views its purpose to ensure that patient voices are heard and that ethical decision-making can happen. That is exactly what the UK and European courts did in this case — made sure that the baby’s interests were heard, separate from the parents. In the US, these interests are often viewed as one and the same, even if they are not. Others would prefer to see bioethics used as a blunt sword, forcing all to follow a narrow vision of imposed right and wrong.

In the U.S., the parents would have autonomy to decide the child’s fate. They could remove the child from the hospital even if that move was against medical advice. However, caring for a ventilator-dependent child could be challenging. They could find other hospitals or “clinics” who would follow their wishes, no matter what it put the child through. The parents could fundraise all they wanted and spend themselves and their friends into bankruptcy pursuing experimental treatments and snake oil. And in the U.S., no one could stop them from prolonging Charlie’s dying filled with pain and potentially suffering with no scientific possibility of anything other than death.

If they were in Texas, two doctors who determined there was no physiological benefit to continued treatment could enact a section of the Texas Advance Directive Act, commonly known as the futility law. If an ethics committee agreed with the doctors, then the parents would have 10 days to find an alternative facility for their child or seek a court order. Otherwise, the hospital could withdraw the support after the clock elapsed. In the U.K., the child’s interest in not being subject to needless and hopeless interventions, and his right to be free from pain overrides his parent’s inability to accept and grieve.

My condolences to Ms. Yates and Mr. Gard who are experiencing one of the worst nightmares of any parent. This is a tragic situation, no doubt. Given the current debates over competing health care bills in the U.S. Senate and House of Representatives, we should pause to realize that both these bills would dramatically reduce Medicaid. Thus, at the same time that politics would encourage the family, doctors, and hospitals to continue body support, those same politics would also ensure that no funds would be available to pay for this extraordinary care if he were in the U.S. but would rather permit his parents to commit themselves to a life of debt with no chance of benefit.