by Craig Klugman, Ph.D.
On Friday, Charlie Gard is scheduled to have his life support discontinued. Charlie Gard is an 11-month-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. In the words of the unnamed U.S. specialist, nucleoside treatment would provide a “small hope” for helping
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. The European Court ruled on July 4 that life support can be removed on Friday.
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. In a May 13 commentary in The Lancet, Dominic Wilkinson, director of medical ethics at the Oxford Centre for Neuroethics, stated that the decisions regarding Charlie’s care and withdrawal of support is in line with how these cases are dealt with in the UK. Wilkinson also stated that there are limits to what a child should be subjected to.
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. Lord Winston, a geneticist supported the parents right to choose, but also said that the comments of Trump and the Pope were “extremely unhelpful and very cruel.” In other words, elected officials should stay out of this issue and not politicize a family tragedy.
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. And let’s not forget that even in the U.S., experimental treatments have never been covered by insurance–the family would be paying out of pocket here.
The author of one article called this a case of “euthanasia” but by definition this case is about withdrawal of support and futility. In no way is this case about doctors giving a medication or procedure to deliberately end a life—the definition of euthanasia. Wesley J. Smith states that the problem is not a sick child, a national health service, or even a medical prognosis. He says that the problem is “utilitarian bioethics advocacy for the right to refuse wanted life-sustaining treatment—called “futile care”—based on the doctor’s or a hospital bioethics committee’s values on the moral worth of the ill patient’s life and/or the high cost of care.” However, lots of bioethics draws on principles other than utilitarianism. “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 (for example, the Jahai McMath case). 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.