The tragic cases of British infants Charlie Gard and Alfie Evans received significant international media attention. They drew comments from a wide range of influential figures, including President Donald Trump and Pope Francis. Not since Terri Schiavo has an end-of-life case received as much media attention as these two did, or as much passionate debate among Catholic commentators. Unfortunately, much of this debate was characterized by overwrought rhetoric that obscured the real issues at stake.
At the core of the controversy in both cases was a question about the proper role of the state in mediating disputes between physicians and the parents of seriously ill children when they cannot agree on a plan of treatment. Specifically, these cases highlighted a tension between developments in secular bioethics and Catholic teaching. In the aftermath of the Schiavo case, the Congregation for the Doctrine of the Faith clarified the church’s teaching on the moral status of artificial hydration and nutrition, and the U.S. Conference of Catholic Bishops formalized this clarification in its Ethical and Religious Directives for Catholic Healthcare Services. With the Gard and Evans cases still fresh in our memory, this is an excellent opportunity to take stock of where they fit within the broader context of Catholic end-of-life ethics and to consider what lessons they may teach us.
It is axiomatic that good medical ethics begins with good medical facts. It would be helpful, then, to review the basic medical facts surrounding each case. Briefly, Charlie Gard suffered from a very rare mitochondrial depletion syndrome. Beginning in the first few months of life, this caused progressive neurological and muscular decay. At the end of his short life, he was unresponsive—though perhaps not entirely unaware—and required mechanical ventilation. His physicians in the United Kingdom believed that the state to which he had been reduced and the devices required to sustain his life might both be causing him discomfort without any hope for future improvement. His parents believed that he might be experiencing the love and care they were providing, and held out hope that a potential experimental treatment would improve his neurological functioning. After the physician who had offered the experimental treatment withdrew his claim that it could be effective in Gard’s case, the British courts, acting in what they believed to be the child’s best interest, ultimately sided with the child’s physicians, allowing them to remove Gard from the ventilator against his parents’ wishes (though, in the end, they acquiesced).
Like Charlie Gard, Alfie Evans suffered from progressive neurological and muscular decline. While physicians never identified the underlying cause of his condition, his treatment team concluded that it must be mitochondrial in nature. When it reached a point of severe and irreversible brain decay and dysfunction, which sometimes caused the child to have seizures at even the slightest touch, his physicians and hospital also petitioned the British courts to allow them to withdraw artificial ventilation over parental objection, which, citing the Gard case, the courts granted.
Nearly every Catholic commentator who assessed these cases did so by applying the traditional Catholic principles governing when certain medical treatments are morally obligatory and when they are optional. Since life is a gift of God and intrinsically valuable, there is a general moral obligation to pursue medical treatments for which the benefits exceed the burdens. However, when the burdens of a treatment begin to exceed its benefit, a patient may choose to forego it.
These principles—which go all the way back to Aquinas and were explicitly formulated in the CDF’s 1980 “Declaration on Euthanasia” and John Paul II’s 1995 encyclical Evangelium vitae—provide some important guidelines for cases like those of Gard and Evans. First, despite the unavoidability of death, respect for the sanctity of life and the dignity of the human person requires that the actions of physicians never aim to cause death. The principle of double effect may allow the provision of treatments primarily intended to relieve suffering even if they may also hasten a patient’s death. Still, in such cases, the patient’s death is not intended. Next, concerns about a patient’s general quality of life—as opposed to the burdens or side effects a specific treatment may entail—are not a sufficient reason to deny or discontinue medical treatment. A patient continues to have the right to beneficial treatments and a fortiori the right not to be intentionally killed even if her physician believes that her life is no longer worth living because of pain or extreme disability. Relatedly, patients maintain their intrinsic dignity regardless of their need for medical treatment. Here, John Paul II strongly condemns a “culture of death” that “sees the growing number of elderly and disabled people as intolerable and too burdensome” to society. Finally, only the concrete circumstances of an individual patient indicate when the burdens of treatment have become disproportionate to the expected benefits. The Ethical and Religious Directives are fairly broad in their description of the types of burden that patients and their surrogates may consider; they include pain, cost, travel, and distress.
Because the relevant Catholic doctrinal statements seem to place the decision-making authority squarely in the hands of patients themselves, or of their appropriate surrogates when patients are unable to express their preferences, many commentators concluded that the physicians’ turn to the courts was unjustifiable. These commentators often supplemented this argument about competence with further theological reflection on the proper relationship between the family and the state. The Catechism of the Catholic Church is abundantly clear that the family is an institution that is “prior to any recognition by public authority, which has an obligation to recognize it.” The family “constitutes a specific revelation and realization of ecclesial communion…a domestic church. It assumes singular importance in the Church…a sign and image of the communion of the Father and Son in the Holy Spirit” (2202). The Catechism describes the right of parents to rear their children as primordial and inalienable. Catholic commentators have therefore claimed that the parents of Gard and Evans were in a better position than the doctors to determine what was in their children’s best interest—a position generally accepted by secular ethicists as well. What about these cases would prompt the physicians to go to court to overrule parental decisions about life-sustaining treatments?