This post is a part of our Bioethics in the News series

By Leonard M. Fleck, PhD

I am writing from London, England, where I am teaching a study abroad course on medical ethics and health policy. We are located in a building just off one corner of the British Museum. More importantly, we are just a few blocks from the Great Ormond Street Hospital for Children (GOSH) where the Charlie Gard case just concluded with his death. Though this case was not part of the formal syllabus, it is difficult to imagine how it could be ignored, given the nature of the course and given that a majority of students in the course intend to pursue careers in medicine.

The case that was a formal part of the syllabus was the Lakeberg conjoined twins case from the early 1990s. These twins shared a single six-chambered heart, which would be incapable of sustaining their lives for much more than a year, possibly two. A novel surgery was proposed to reconstruct the heart into a normal four-chambered organ, which would mean that one twin would have to have its life ended through the surgery itself in order to offer “less than a 1% chance of survival” for the other twin at a cost in excess of $1 million. Loyola University Medical Center refused to do the surgery (demanded by the parents) for two ethically relevant reasons. They objected to causing the death of one child in order to save the life of the other (no matter what the chance of success), and they objected to what they regarded as an unjust use of their limited charity care budget. The surgery was performed at Philadelphia Children’s Hospital. The surviving twin lived for eleven months in the ICU, suffering one complication after another related to the surgery. Did those parents have the right to make those demands of the surgeons because they believed that was in the best interest of one (or both?) of these twins?

The students knew the end of the Lakeberg story (thanks to smartphones undermining my pedagogical objectives). However, they did not know the end of the story in the case of Charlie Gard until today (7/28/17). The pedagogical virtue of this situation is that the students (and I) had to struggle with the relevant ethical issues just as much as the health professionals and parents in this situation.

To recall the basic medical details of the case, Charlie Gard suffered from an extremely rare mitochondrial DNA depletion syndrome (infantile onset encephalomyopathy). This results in a gradual weakening of all the muscles in the body, including the lungs, which is why Charlie had his life sustained by a ventilator since October of 2016 (he had been born in early August). In addition, he suffered multiple seizures in late 2016, which resulted in massive brain damage. In early March of 2017, Charlie’s doctors recommended the removal of life-support and that he be allowed to die. Their judgment was that nothing more could be done that was in the best interest of Charlie. The brain damage and muscle damage were irreversible. That recommendation was instantly rejected by the parents. The parents had surfed the web in late 2016 and found Dr. Hirano at Columbia, whose primary area of research was mitochondrial depletion syndrome. He was prepared to offer an experimental treatment called nucleoside therapy, which had yielded some marginal benefit for children with a condition similar—but not genetically identical—to Charlie’s condition.

Readers are likely already aware that the dispute went all the way up to the UK’s highest court as well as the European Court of Human Rights. The courts all sided with the physicians and their judgment of what was in Charlie’s best interest. In the meantime, the parents created a GoFundMe account to pay the costs of taking Charlie to the U.S. for this experimental treatment. That fund accumulated $1.7 million. More importantly, petitions were circulated that gathered 350,000 signatures from individuals demanding that Charlie’s parents be allowed to take him to the U.S. for that experimental treatment.

In class, we discussed several major ethical issues generated by this case. Perhaps the central one pertained to the scope of parental authority to judge the best interests of their child in the face of medical judgment, and powerful medical evidence that supported the view that the physicians caring for Charlie had a better sense of his best interests. What the students saw in local news reports were desperate, anxious parents trying to save the life of their child. Further, these parents were up against a powerful and unyielding medical establishment that had given up in their efforts to save their child. (There is a bit of the David and Goliath narrative here.) Further, the State itself, through the courts, with all its coercive authority, had sided with the physicians and condemned their child to death. (I realize this might sound very melodramatic, but this is an accurate characterization of how it was publicly perceived by many who kept vigil outside the hospital. This characterization helps to explain the multiple death threats directed at various members of the medical staff at GOSH.)

In class, students who were sympathetic to the parents argued that the offer of an experimental treatment by Dr. Hirano represented a “last chance” therapy. This was the “only hope” that Charlie’s life could be saved. Surely, the students argued, no parent should be denied the right to pursue any medical intervention that might save the life of their child. I conceded that in these circumstances, wide scope should be given regarding parental judgment of what was in the best interest of their child, but that scope was not unlimited, and parental judgment could be askew for multiple possible reasons.

Some students seemed to think that if Charlie was doomed to die from his disorder, then there was nothing to lose from pursuing an experimental intervention. Other students noted that medical experiments can go very badly, and that Charlie could suffer seriously and unnecessarily as a result of bad science. I noted that there was no medical evidence at all to support Dr. Hirano’s suggestion that his intervention could offer reasonable hope of benefit for Charlie, though Hirano suggested at one point that there was a 16%-54% chance of some benefit. He based those numbers off his work with children with a similar condition, though “similar” in this case did not warrant the optimistic projection conveyed by Dr. Hirano.

An ethically relevant question to raise would be: “What was really in Charlie’s best interest?” The physicians caring for Charlie were concerned that the life-prolonging care they were then providing was itself causing unnecessary suffering, and hence, contrary to Charlie’s best interests. This, to my mind, was a medically disputable point. Profound brain damage had already occurred. The areas of the brain that would generate the phenomenon we would recognize as pain may have been inoperable. Further, there seemed to be no clinically visible manifestations of pain in Charlie. Perhaps he was beyond suffering. Consequently, the benefit-burden test that would typically be applied in this situation might not have been applicable. There were no benefits and there was no burden (maybe). Still, this might not be sufficient to justify yielding ultimate decisional authority to the parents, ethically speaking.

What we finally learned, once Dr. Hirano traveled to the UK, was that he had never reviewed any of the medical records, including CT and MRI scans, of Charlie’s brain while in the U.S., starting in March. He was in the UK only a matter of days in mid-July before he concluded that there was no hope for any sort of recovery for Charlie. In the meantime, he had generated the worst sort of false hope in the parents, not to mention the public passions that had been inflamed and that generated threats against the lives of those caring for Charlie. He had offered his initial judgments on the basis of no medical evidence whatsoever. Further, this was seized upon by Donald Trump for purposes of scoring points with his Right to Life constituency, though, it should be noted, Charlie Gard was not a citizen of the U.S., as would also be the case with Mexican children in the U.S. faced with life-threatening medical problems whose parents were not U.S. citizens. No record exists of Donald Trump making any passionate plea for the medical needs of those children. The following passage from the British press is worth noting: “Charlie Gard is now at peace but the agonies of his case were made far worse by a screaming U.S. right-wing media giving his parents false hope.”

In the final analysis, the Charlie Gard case should have been a private and painful misfortune. It became a political and moral tragedy when it was politicized. Dr. Hirano sought to explain his own behavior by saying that “the window of opportunity had closed,” thereby implying that at an earlier point in time his magical medical treatment might have worked. That statement represents the worst sort of self-serving disingenuousness imaginable. There was no tragedy there; it was just plain unethical.

Leonard M. Fleck, PhD, is a Professor in the Center for Ethics and Humanities in the Life Sciences and the Department of Philosophy at Michigan State University.

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