Life Matters Media
Quality of life at the end of life

Medical Decision-Making In The Tragic Life Of Charlie Gard

Charlie Gard is a nearly one 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. Charlie suffers from seizures and cannot independently breathe. He is also blind and deaf. Doctors at London’s Great Ormond Street Hospital believe there is nothing more medically that can be done to benefit him and have 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. The technique has never been tried on Charlie’s condition.

A Gard family photo posted on Twitter.

Despite the uproar in the U.S., the outcome of this case has no legal bearing on what happens here. In fact, the loudest voices against the European courts and the hospital’s decision come from the U.S. The U.S. House of Representatives Committee on Appropriations voted on an amendment that would grant Charlie permanent residency.

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. The courts declared that prolonging Charlie’s life would be “inhumane and unreasonable,” and that experimental treatment in the U.S. would be futile and could cause suffering. When parents and physicians disagree about treatment under British law, the court normally intervenes and is the final decision-maker. Unlike in the U.S., the highest value is the best interest (benefit) to the child, rather than a parent’s right to make decisions. Parental autonomy for medical decision-making has more stringent limits in the United Kingdom. In the U.S., there is no right to health care. Residents of the U.K. have such a right. Even so, not everyone receives all of the care they need, never mind the care they want.

In echoes of the Terri Schiavo case, this family’s tragedy is being turned into political fodder. Donald Trump tweeted that the U.S. 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. Americans are making a political issue about this baby’s fate, proposing to spend resources and time to save a dying baby that would not be spent on U.S. citizens.

Some pundits have stated that the case is an example of the dangers of “socialized medicine,” claiming that the problem is the state’s unwillingness to pay for Charlie’s care. The courts stated that their decision to withdraw support had nothing to do with cost, but with the child’s best interest. Charlie’s parents have been fundraising to pay for a trip to the U.S. for treatment. Through GoFundMe, they have raised more than £1.3 million (about $1,680,000). However, that number is a low estimate, as they are also collecting money via direct bank transfer and Paypal.

“Bioethics” cannot make medical decisions — only physicians, families and courts 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 not align with stringent (and often religious) views that every moment of life, no matter its quality or cost, must be pursued. Mainstream bioethics views its purpose as ensuring that patient voices are heard and that ethical decision-making can happen. That is exactly what European courts did in this case — made sure that the baby’s interests were heard, separate from those of the parents. In the U.S., 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.

Americans are making a political issue about this baby’s fate, proposing to spend resources and time to save a dying baby that would not be spent on U.S. citizens.

In the U.S., parents would have the autonomy to decide their child’s fate. They could remove their 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 that would follow their wishes, no matter what those wishes put their child through. Parents could fundraise and spend themselves into bankruptcy pursuing experimental treatments, and even snake oil. And in the U.S., no one could stop them from prolonging a child’s dying, filled with potential pain, suffering, and with no scientific possibility of anything other than death.

If they were in Texas, two doctors who determine there is no physiological benefit to continue 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, the parents would have ten 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 a 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. Given the current debates regarding competing health care bills in the U.S. Senate and House of Representatives, we should pause to realize that both bills would dramatically reduce Medicaid. At the same time that politics would encourage the family, doctors and hospitals to continue body support, the same politics would also ensure that no funds would be available to pay for this extraordinary care. Such politics would rather permit his parents to commit themselves to a life of debt, with no chance of benefit.

Craig Klugman, PhD is a bioethicist and medical anthropologist who serves as professor and chair of DePaul University’s Department of Health Sciences.