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08/03/2017

Charlie Gard: Three Issues That Did Not Make Social Media

by Ann Mongoven, Ph.D., MPH

All hearts go out to the Gard family in this time of grief for their son, Charlie.

The legal wrangling over Charlie’s care became a political football–unfortunately, about many things having little to do with Charlie.

Despite the involvement of Pope Francis, this was not a case about abortion rights or the sanctity of human life. Catholic tradition warns both that quality-of-life arguments can dehumanize the disabled, and that unduly burdensome medical care can become assaultive. There is no “Catholic” view of the case, and Catholic moral theologians disagree about it.

Despite the involvement of Donald Trump, this was not a case about the relative merits of the U.K. National Health Service (NHS) versus other health systems. It was not a case of utilitarian ethics pitted against duty-based ethics or love. The NHS provided extremely expensive intensive care for Charlie for most of his life, and British courts governed cases related to his care solely by a “best interest of the child” standard– amidst heated disagreement between Charlie’s parents and doctors about his interests. The European Court of Human Rights backed the British court decision.

The case did address questions about who should decide when parents and doctors disagree about a child’s medical interest. But contrary to some portrayals in the American press, it neither changed conventional parameters for addressing those questions, nor exposed major differences in legal reasoning used to address them in the U.K. and the U.S.  Both countries appeal to “best interest” standards for resolution, and both reject an absolutist interpretation of parental rights. It is not unusual for American courts to order medical treatment against parental objection, such as emergency blood transfusions for children of Jehovah’s Witnesses. Nor is it unusual for American courts to back hospitals’ right to refuse pediatric treatment deemed medically futile.

However, the case did present a novel constellation of features raising three issues for more sustained discussion.

(1) Is the best-interest-standard an objective (as possible) standard, or a claim of conscience?

What was unusual in the Gard case was that the British court blocked transfer of Charlie for experimental treatment after accepting the hospital’s argument that withdrawing treatment was in Charlie’s best interest. In the U.S., courts typically allow parents to transfer children to another willing provider and pay for experimental therapy. (See commentary by John Lantos.)

Allowing transfer treats conflicting assessments of best interest as competing claims of conscience to be balanced as well as prioritized by the court. However, if the best-interest-standard is viewed as an objective standard, then allowing transfer becomes inconsistent. That was the view of the Gard court. Having sided with the hospital’s view that experimental treatment would be both unbeneficial and tortuous, the court refused to allow it at another location.

In cases where nothing can be known about the patient’s values, the “best interest standard” is generally interpreted as a “reasonable person” standard. The Gard court found that most reasonable people would find Charlie’s continued treatment futile and burdensome, if educated on the medical facts. The court’s high degree of felt certainty highlights important logical considerations. The greater the certainty ascribed to a reasonable-person-standard in a given case, the more inconsistent it becomes to allow transfer in order to accommodate conflicting parental wishes—whether those be for treatment or non-treatment. Of course, the inverse is also true.

The court’s approach focused centrally on the vulnerability of the young.  A baby can never say “enough is enough.” Therefore, the court weighed social responsibility to implement a best-interest-standard over parental discretion.  The Gard cases challenges future decision-makers to locate best-interest arguments on a spectrum between poles conceptualized alternatively as claims of conscience, or as objective claims.

(2) What ethical standards should govern medical experimentation on vulnerable children with rare conditions?

The experimental treatment desired by Charlie’s parents had never been tested on animals or humans. Significantly, the hospital had supported trying the therapy before Charlie had a massive seizure causing severe brain damage. Both the hospital and the court viewed its proposed use after that as experimentation on Charlie, rather than experimentation for Charlie. While the consulting American neurologist’s rejection made the matter moot for Charlie, the issues raised have broad ramifications. Conventions requiring extensive pre-human testing and human clinical trials for new treatments are generally protective of patients. However, they can thwart research altogether on extremely rare conditions, such as Charlie’s. Medical ethics allows greater risks and burdens to be placed on children for therapeutic research that might benefit them directly than for non-therapeutic research. Non-therapeutic research may increase scientific knowledge but with no expected direct benefit to the patient. However, it is not always clear when research should be classified as therapeutic or nontherapeutic. Charlie’s case sparked debate on just that. (See commentaries by Dominic Wilkinson and Julian Savulesco)

Assessment may be challenged by subconscious presses either to consider any research on direly ill children therapeutic, or to be very accepting of the burdens of nontherapeutic research on ill children. “Children should not die, so there must be a significant chance research can help them,” inner voices may say—a distinctively pediatric version of therapeutic misconception. Or the understandably fierce desire of parents to have something good come of their child’s suffering may make them view significant discomforts of non-therapeutic research as reasonable.

Charlie’s grieving parents voiced hope that their son’s short life can continue to influence the world positively. One way that it can is by inviting renewed conversation on how, amidst agony and complexity, to draw humane lines between experimentation on and experimentation for children. (Paradoxically, to draw such lines well even though all research for children must also be on children.)

(3)   How can antagonism among care-givers be minimized in dire cases?

It was unavoidable that Charlie Gard was direly ill. But could the personal hostility that developed between Charlie’s doctors and parents have been avoided—to his and his family’s benefit? While courts must be ultimate arbiters of children’s interests, the months of conflict and court processes did not advance anyone’s view of Charlie’s best interest. Nor was it constructive that the case became publicly embroiled in multiple “us-versus-them” framings, becoming an emblem of general anti-establishment malaise among people who may have known little about the medical facts.

The harsh reality is that Charlie was born dying. He was born dying in a culture that does not like to acknowledge mortality at all, let alone for children.

One casualty of such cultural denial can be palliative care for children, but fortunately Charlie’s doctors were devoted to palliative comfort-care. However, they seem to have transformed that commitment from a protective shield for Charlie into a spear against his parents.  Questions about why the parents’ final wishes to have Charlie die at home, or alternatively in a hospice of their choice, were denied remain unanswered.  The doctors insisted they had to insure adequate palliative care, and the court deferred to them. While transport of ventilator-dependent patients and home-based withdrawals of ventilation in terminal cases are challenging, they are possible. In general, the palliative care movement is committed to supporting home dying, or dying in the most home-like setting possible.  (If a critical care pediatric hospice really was the only medically appropriate location, were the Gards encouraged to bring anything and anyone to make Charlie’s dying room as homey as possible–so they felt less controlled, and more supported? Their public comments do not indicate so.) Perversely, the case created an illusion of conflict between palliative care and care outside the hospital.

Religious communities too seemed to have failed Charlie and his parents.  Some Christian commentators made Charlie an icon to advance their views on abortion or disability rights, or on parental rights and the moral status of the family. Their politically-motivated clamor pushed to the side one of the most elemental contributions of religious life: to help people bear mortality.

Certainly the general public shares blame for casting the case to vilify differently-construed enemies, and thus to deny the basic tragedy of the case that was no one’s fault.  Responsible people should ask themselves why they were drawn into the social media fray, often equipped with little real information.

During the final go-round in court, even the exasperated judge exclaimed that Charlie’s case “cried out for mediation.”  This was a case in which all parties were ardently committed to Charlie. Charlie’s doctors likely applaud Charlie-like parents in their non-dire cases.  Could hospital ethics committees—either one, or several in consortium, have helped to develop a consensus about whether treatment was futile before the case became a battle? Should there be policies regarding how to define futile versus heroic attempts at treatment, policies that draw on past cases to inform future ones?  (See commentary by Amy McGuire. The hospital claimed its decision was in line with related guidelines of the Royal College of Pediatrics, but it is not clear those guidelines were used to guide pre-court discussions with the family.) What kinds of informed consent processes for research can address simultaneously both unique challenges of research on rare conditions and unique pediatric manifestations of therapeutic misconception?  Were hospital chaplains or social workers involved attempting to arbitrate tensions in ways that reaffirmed the noble commitments of all involved?  Why was the reaction of so many in the public rage, at a case that posed wrenchingly difficult questions— rather than a sigh in solidarity with those facing such tragedy?

Perhaps little Charlie can make us all think twice when we find it more palatable to create imaginary demons than to stand with the dying, and their loved ones, as they are dying.

Even with dying children.

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