A few days before I published last week’s post, I saw the news of Charlie Gard’s death on CNN. It was really a solemn moment for me – bioethics can help you rationalize death, but you never quite get used to it. Infants and children, especially, leave my heart feeling a bit like a festering wound. Part of me questioned even writing about his story. The Gard family’s story became so public and polarizing that I was not sure if I wanted to contribute to the the figurative opening-of-the-shower-curtain on his parent’s grieving. But part of me also felt that this story needed to be through a different lens and clarified, while told with care. Between the Pope and President Trump’s involvement in Gard’s story, the true issues have become clouded. This was not a pro-life issue. Nor was this a political issue. This was a legal-bioethical issue that had more to do with the United Kingdom’s laws than our American sensibilities.
Charlie Gard was an 11 month old baby boy. Initially thought to be perfectly healthy, his parents, Connie Yates and Chris Gard, noticed that he was struggling to lift his head and to support his body. After taking him to the doctor, they found that Charlie had rare, genetic, disease called mitochondrial DNA depletion syndrome (MDDS). MDDS causes progressive muscle weakness, brain damage, and organ failure. By October 2016, he was lethargic, wasn’t breathing properly, and was transferred to Great Ormond Street Hospital in London, England. Yates and Gard later wanted to take him to the United States for an experimental treatment called nucleoside bypass therapy. Through a crowdfunding initiative, Yates and Gard raised the money needed for the treatment. The treatment has been tested on 18 patients in Spain and Italy with an 11% to 56% clinical effectiveness rate. However, it had not been tested on anyone with Charlie’s condition. It also had not been approved by the U.S. Food and Drug Administration, but under a compassionate use exemption (which allows for patients to pursue experimental treatment as a last resort) Charlie would have had access to treatment.
The Royal College of Pediatrics and Child Health gives guidance on legally and ethically terminating treatment of infants and children in the United Kingdom. Acceptable termination of treatment is allowed when 1) the child is brain dead, 2) the child is in a permanent vegetative state, 3) the child has no chance for life, 4) the child has no purpose (meaning the child could live with treatment but the impairment would make it unreasonable for them to have to endure it), and 5) if pursuit of treatment would cause unbearable pain and suffering for the child. Under the United Kingdom’s Children’s Act 1989, the welfare of the child is the most important consideration in all decisions regarding a child. When there is a conflict in what is best for the child, the child must be given an independent voice in the matter. Though the United States’ legal system and laws are derived from the United Kingdom, this situation would be handled differently here. There is a best-interest standard in the U.S. However, U.S. Courts tend to lean towards parental judgement or ordering treatment. There have been exceptions such as the case of Terri Schiavo or In the Matter of Baby “K”, but the courts usually lean in the direction of treatment.
Here is how this affected the Charlie Gard case. Great Ormond Street Hospital and Charlie Gard’s parents did not agree on the best course of treatment for him. The hospital did not think it was the best decision to for Charlie to travel to the United States. They believed it was best to provide palliative care. Yates and Gard believed it was the best decision for him to go to the United States for the experimental treatment and asked the court to continue artificial ventilation until he could go to the United States. His parents also argued that legally, the standard given in the Children’s Act was not the appropriate legal test. Rather, the appropriate test would be whether the child would suffer significant harm as a result of the decision. Since there was a conflict between the parents and the physician, the decision legally had to be deferred to Charlie. Charlie was a baby and unable to make that decision for himself, so he received an independent guardian. The guardian agreed, upon investigation, with the hospital that it was not in Charlie’s best interest to travel to the United States to receive the experimental treatment and that palliative care should be provided. Soon after the ruling, the neurologist who offered treatment to Charlie told his parents that it was too late for the treatment to work. His parents then withdrew their request for a changed court order and his death was announced on July 28, 2017. In the days following Charlie’s death, many public figures, such as Pope Francis and Prime Minister Theresa May, offered their condolences to the Gard family.
Complicated isn’t it? Some things, even when fully litigated, can end tragically. Legality, morality, and ethical issues are intertwined but still can be separate entities depending on circumstances and nuances. This case is a prime example of this. My sincerest condolences to the Gard family during this devastating time. I cannot imagine the pain you must feel.
The Neighborhood Bioethicist