Charlie Gard: a story of disability bias
The case of Charlie Gard case is disturbing because it represents a blurred line between euthanasia and palliative care—and I think that no one in this case wants to be accused of euthanasia. The parents, health care professionals and court officials all clearly want to do what is right. As with so many things, though, “what is right” depends very much on how we tell the story.
For many, Charlie is a dying boy whose quality of life is in question, and who is probably feeling pain from the ventilation system that enables him to breathe. As the decision by Britain’s highest court notes, the medical professionals caring for Charlie believe that “[he] can probably experience pain, but is unable to react to it in a meaningful way. Their evidence was that being ventilated, being suctioned, living as Charlie does, are all capable of causing pain.”
The Charlie Gard case is disturbing because it represents a blurred line between euthanasia and palliative care.
In this context, the Catholic Church’s distinction between ordinary means and extraordinary means of prolonging life and seeking treatment makes sense, as it appears there are no “ordinary” treatments available to Charlie given his condition. St. John Paul II wrote in “Evangelium Vitae”: “It needs to be determined whether the means of treatment available are objectively proportionate to the prospects for improvement. To forego extraordinary or disproportionate means is not the equivalent of suicide or euthanasia; it rather expresses acceptance of the human condition in the face of death” (No. 65). The courts have determined that the available treatment is not objectively proportionate and that Charlie, suffering from a rare genetic condition called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, or M.D.D.S., should instead receive palliative care.
Yet there is another story here. That story is the court’s repeated and consistent allusion to Charlie’s mental disability and brain damage as a key reason for not attempting the experimental treatment that the parents have sought—treatment that a doctor in the United States is willing to attempt and that people have supported with their funding. (On Friday, the Great Ormond Street Hospital said it would reconsider its decision to turn off life support for Charlie Gard and would seek a new ruling from the courts in light of “new evidence” about possible treatment.)
The focus of the court’s documents is not on Charlie’s imminent death, but on his brain function.
The decision by the Royal Courts of Justice, upheld by the European Court of Human Rights, even notes that Great Ormond Street Hospital staff had entertained the experimental procedure: “At one stage, Great Ormond Street Hospital got as far as deciding to apply for ethical permission to attempt nucleoside therapy here—a treatment that has never been used on patients with this form of MDDS—but, by the time that decision had been made, Charlie’s condition had greatly worsened and the view of all here was that his epileptic encephalopathy was such that his brain damage was severe and irreversible that treatment was potentially painful but incapable of achieving anything positive for him.” It is not entirely clear what “positive” might mean here, but the decision links “positive” with mental state. The court decision later notes: “But if Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?”
The focus of the court’s documents is not on Charlie’s imminent death, but on his brain function. That does not, to me, mandate what “Evangelium Vitae” calls the “acceptance of the human condition in the face of death.” Rather, it suggests to me our own societal failure to accept people with disabilities, including and especially mental disabilities.
The church has something to say about that, too. In “Evangelium Vitae,” the pope writes about prenatal diagnostic techniques that encourage selective abortion with respect to babies who might have disabilities, including disabilities like the ones Charlie has: “Such an attitude is shameful and utterly reprehensible, since it presumes to measure the value of a human life only within the parameters of ‘normality’ and physical well-being, thus opening the way to legitimizing infanticide and euthanasia as well” (No. 63). Rather, Christians are asked to live lives of solidarity with all, including those who are disabled (Catechism, 2208).
What our tests can measure about brain function is not a solid indication either of death or future quality of life. Bioethicist Jeff Bishop has shown that we have arbitrarily created guidelines about brain function that support our culture’s particular view of mental health and illness. There are numerous examples of families and medical practitioners being surprised by improvement and recovery in apparent brain death or vegetative state cases, and there is extensive research about autism and other conditions involve different kinds of brain functioning. This is all to point out that our understanding of brain health and mental well-being is limited and involves more questions than answers.
That is why, when the court’s ruling is so focused on brain function rather than imminent death, I think that the court ought to permit experimental treatment. I think Christians ought to push against the subtle (and apparently well-meaning) bias perpetuated about disabilities. And I think church teaching enables Christians to support Charlie and his parents in their desire to seek further treatment.