Charlie Gard: An Unnecessary Tragedy?

Bioethics in the News logoThis 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.

Image description: a photo of a blue sign with white lettering that reads “Welcome to Great Ormond Street Hospital Main Reception.” Image source: Tom Page/Flickr Creative Commons

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 Fleck photoLeonard 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.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Wednesday, August 16, 2017. With your participation, we hope to create discussions rich with insights from diverse perspectives.

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The Challenges of Global Commercial Surrogacy

Bioethics-in-the-News-logoThis post is a part of our Bioethics in the News series. For more information, click here.

By Hannah Giunta

Recently, The Guardian has carried a series of articles on the issue of commercial surrogacy. No doubt the recent emphasis stems from high-profile cases in the UK and the U.S., particularly the case of a UK surrogate mother who was ordered to honor her surrogacy agreement with a gay couple after she changed her mind about relinquishing the child (see this article for more details). In her May 9th editorial, Catherine Bennett laments that relational breakdowns in UK informal surrogacy arrangements will only encourage couples to look elsewhere for surrogates, and there are many women in developing countries who are willing to enter into these agreements even when few regulations exist to protect them. Surrogacy brokers can control these vulnerable women and sometimes force them to stay in special housing units where their activities can be monitored continuously until delivery. Keeping the child is socially and financially prohibitive for the women, so the brokers can guarantee the baby is handed over with minimal drama.

Image Description: a view of a pregnant person’s bare stomach covered in post-it notes that have names written on them. Source: Flickr Creative Commons.

Even if richer countries like the UK and U.S. harmonized their laws and permitted commercial surrogacy domestically (like some U.S. states already do), arrangements would still sometimes fall apart, and wealthy couples desperate for a child would be drawn to the assurance provided by surrogacy brokers. Making an admittedly ethically inexact analogy with prostitution, Bennett surmises that there may be things, particularly acts that dehumanize and commodify women’s bodies, that no one should be asked to do, even for money. While I sympathize with Bennett’s desire to protect vulnerable women from exploitation, I worry that trying to simply end surrogacy would serve only to drive it underground. After all, prohibiting prostitution certainly hasn’t ended the practice. On the other hand, regulations without a new framework for the practice would ameliorate some of the exploitation endemic in commercial surrogacy but would fail to fundamentally address just what is so problematic about these ventures. However, there may be a middle way. If we want to address the larger moral issue, we have to ask, “What should give us pause about commercial surrogacy in a world where people can accept money for many forms of physical labor often at egregiously low prices?”

To my mind, the dehumanizing and commodifying part of current surrogacy practices in developing countries is not the use of women’s bodies for what might be a distasteful purpose to some but the surrogate’s wholesale exclusion from the relational aspects of pregnancy and birth. Here I call pregnancy and birth inherently relational because they usually result in the founding of a family unit, whatever the unit might look like. To be sure, families are not always founded intentionally or under the best of circumstances, but I would argue that at some level all pregnancies cement relationships and promote family ties. A new child solidifies the understanding that certain adults are now bound together at least through their relationship with the child. And, there is something special about family ties. We help relatives through troubled times, and we remain loyal to family members even when they annoy or disappoint us. The extent of our connections changes with proximity, but we treat even distant relatives with some respect just because they are in our family. Family members aren’t like contractually obligated service providers, and family life is much messier than any commercial venture. Surrogates in developing countries usually remain unrecognized as even extended family members, and this lack of recognition is presented as a desirable outcome by commissioning couples and surrogacy brokers. Commercial surrogacy arrangements where prospective parents possibly supply the raw ingredients, sign a contract, and return for pick-up with the intention never to see the surrogate again require women to do fundamentally relational work without relational support or respect. Effectively, couples are saying, “You’re good enough to carry our child but not welcome as part of our family.” It’s this attitude that is unacceptable. We should be wary when people want to found a family while excluding a significant member from the picture entirely. Not to mention, surrogacy has an impact not just on the involved adults but sooner or later on the child who is deprived of a potentially significant relationship. The worry about commercial surrogacy then shouldn’t be based solely on the physical labor performed or risks undertaken. It should be informed by the inherently relational nature of pregnancy and birth. With the current vision of international surrogacy as a clean, strings-free way to have a child, we need to change how we look at the process. Only then will regulations truly help.

What might surrogacy look like if there were significant efforts to integrate the surrogate into the larger family unit and thereby restore relational ties? Obviously, every surrogacy arrangement would look different, but minimally, there would have to be avenues for the surrogate to remain in contact with the family after delivery. Provisions would likely look similar to those specified in open adoptions. These changes would impact couples seeking surrogacy arrangements, but family life isn’t exclusively about the needs of any two people. The surrogate’s desires and the child’s needs should factor just as heavily into the discussion. Acknowledging the unique and fundamental role surrogates play in families is the only way to insure their wombs are not merely leased for nine months. If children were like products, then such leasing might be acceptable. But, children are family members who deserve positive relationships with as many other family members as possible, and they share an undeniable relationship with their surrogate. After all, if the surrogate had not carried them for nine months and done real work on their behalf, they wouldn’t exist. Founding a family will always have to be like family life itself—messy but rewarding—and that dichotomy is something that rigid commercial contracts can’t easily accommodate. The only way to right the wrong is to realize that when a couple creates a child with a surrogate they are founding a family—one that includes the surrogate herself.


hannah-giunta-100Hannah Giunta is a sixth year DO-PhD student pursuing a PhD in Philosophy and Bioethics.

Join the discussion! Your comments and responses to this commentary are welcomed. The author will respond to all comments made by Thursday, June 4. With your participation, we hope to create discussions rich with insights from diverse perspectives.

You must provide your name and email address to leave a comment. Your email address will not be made public.

Two Brownbags in November: learn about UK health policy, decision-making in pediatric oncology

bbag-icon-decNHS reforms: What is the Reality of Clinician-Led Purchasing of Health Services?

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In 1948 the National Health Service was established as a tax funded health service available to all, free at the point of access regardless of the ability to pay. The reality in the second decade of the 21st century is that with the ageing population and the concomitant increasing burden of disease and social care needs, together with the development of advanced technological treatment modalities, the cost burden is increasing rapidly. In 2012 the UK government introduced reforms which were based on the premise that family physicians, because they were closer to their patient, would know what their patient health care needs were and would therefore be able to commission health care more efficiently. This would all take place within an economic environment where downward pressure on costs was the norm. Dr. Meakin will describe the reforms and examine the reality of these reforms from the perspective of a practicing family physician in the UK.

nov-4-bbagJoin us for Richard Meakin’s lecture on Tuesday, November 4, 2014 from noon till 1 pm in person or online.

Richard Meakin, MD, is Clinical Senior Lecturer in the Department of Primary Care & Population Health at University College London (UCL). He is also a partner in a rural family practice north of London. After graduating from St. Mary’s Hospital Medical School, University of London he went on to train as a Family Physician. He gained a MSc in Family Medicine and a Doctorate. He has a long-standing interest in Medical Humanities and Bioethics and served as founding President of the UK Association for Medical Humanities (2002-2005) and was a member of council until 2012. He is a fellow of the Higher Education Academy and won the Cancer Research Campaign Medical Education Prize in 1998. Currently, when not seeing patients, he is predominantly involved in undergraduate and postgraduate education in family medicine at UCL.

bbag-icon-decDecision-making in Pediatric Oncology: Who Really Decides?

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Edit 10/30/2014: This lecture has been canceled.

Informed consent is a pillar of patient autonomy in medicine. In the pediatric world, the informed consent process often involves not only parental consent for treatment but a minor’s assent as well. However, a true informed consent process allows a family or patient to refuse a proposed course of treatment—but is this really true in pediatrics? Is a family allowed to forgo a potentially lifesaving therapy for their child if the chance of survival with the treatment is excellent? Should the prognosis matter? Should the age of the child matter? This talk will discuss challenges of decision making in children with cancer including a discussion on the ability of a family or minor to refuse potentially life-saving treatments.


Join us for Bradd Hemker’s lecture on Wednesday, November 12, 2014 from noon till 1 pm in person or online.

Bradd Hemker, MD, is an assistant professor in the Department of Pediatrics and Human Development in the College of Human Medicine at Michigan State University. He practices Pediatric Hematology/Oncology with a special interest in Palliative Medicine and Bioethics.

In person: These lectures will take place in C102 East Fee Hall on MSU’s East Lansing campus. Feel free to bring your lunch! Beverages and light snacks will be provided.

Online: Here are some instructions for your first time joining the webinar, or if you have attended or viewed them before, go to the meeting!

Can’t make it? View these webinars and others as archived recordings.