This is an update to Lisa Fullam’s original story, which appears in full below.
Charlie Gard had another day in court on Thursday. The hospital’s submitted statement points to the fundamental difference between the stance of Charlie’s parents and that of the hospital: while his parents insist that they alone have the right to determine Charlie’s further treatment, the hospital believes that “a world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH [Great Ormond Street Hospital] treats its child patients.”
Joshua Rozenberg of the BBC live-tweeted the court hearing. The U.S. researcher, now confirmed to be Dr. Michio Hirano, will travel to London to examine Charlie personally. There is disagreement as to whether and how much of Charlie’s brain damage is structural: the hospital notes that Charlie’s skull hasn’t grown in three months, (an indirect measure of brain development,) while his parents dispute the number. An MRI or EEG could help establish Charlie’s degree of permanent brain damage, but the judge has refused to order these non-therapeutic tests without Charlie’s parents’ consent.
Charlie is now on a low dose of oral morphine, which was started recently. The hospital explained that “all of those caring for him at GOSH hoped very much that Charlie did not experience pain. They did so in the knowledge that if he did not, it was because he had no experience at all because he was beyond experience.”
Dr. Hirano testified that there is about a 10 percent chance that Charlie will respond to the proposed treatment; however, no one has used this treatment on a child with Charlie’s mutation or on a child with encephalopathy, or even on mice with Charlie’s mutation. The children who have been treated have a form of this disease that principally affects muscle cells. Of nine ventilator-dependent children with the less severe form of the disease, one is now off the ventilator. Brain cells, though, are more sensitive to injury than muscle cells, and cannot regenerate when they die. Given Charlie’s lack of response to anything but pain, and the deterioration in his condition noted by his caregivers, it seems very unlikely that even a successful treatment would do Charlie any actual benefit.
The judge will render his decision on July 25.
Meanwhile, the media circus heats up. A number of anti-abortion groups have adopted Charlie’s cause, and both President Trump and Vice President Pence have advocated for Charlie’s transfer to the U.S. for treatment. Charlie’s doctors have been accused of incompetence born of social privilege, and picketers outside Buckingham Palace have called them murderers.
And Charlie? Between his brain injury and the morphine he’s been given, we can only hope that he’s “beyond experience.” Charlie’s brain damage has been described as “catastrophic and irreversible” by the physicians who have examined him, and which is supported by the hospital’s evidence of his continued deterioration. Between that brain damage, buttressed by morphine, just in case, Charlie remains on a ventilator in a state not unlike that of a decerebrate laboratory animal, waiting to be experimented on, despite the likelihood that he, most likely, cannot benefit in any significant way.
The tragic case of the terminally ill, eleven-month-old Charlie Gard has attracted a great deal of media attention, some of which includes assertions that Catholic moral tradition requires or leans against continued medical intervention. But before the moral question can be addressed, the medical condition can use some explication. After all, as I was taught, morality must be based in reality.
So let’s focus first on Charlie. He is suffering from the encephalomyopathic form of a genetic condition called mitochondrial DNA depletion syndrome (MDDS). Mitochondria are organelles (subparts of cells) whose job is energy production. Mitochondria are the engines of cells, without which cells die. Charlie has a mutation in his RRM2B gene, which means he cannot manufacture enough DNA in his cells (outside the nucleus) to maintain enough mitochondria for normal cell function. As of 2013, RRM2B mutations had been identified in just fifteen infants worldwide with severe multi-organ symptoms. Those born with this condition die in early childhood at the latest. Charlie is deaf, has muscle weakness, and suffers persistent seizures, all signs associated with this mutation. Arturito Estopinan, a child sometimes cited as cause for hope in cases like Charlie’s, has a different type of mitochondrial depletion, which progresses more slowly than Charlie’s.
Charlie is currently in the neonatal intensive care unit of Great Ormond Street Hospital in London, where doctors describe him as suffering from “catastrophic and irreversible brain damage.” New York-Presbyterian Hospital/Columbia University Medical Center has offered to admit Charlie for experimental treatment if the legal and practical issues of transporting him can be overcome. Columbia physician Michio Hirano is working on the therapy that seems to have stopped the progression of Estopinan’s disease and that may have resulted in some improvement. The treatment involves supplementing the building blocks of mitochondrial DNA, thus obviating the need for it to be made inside cells, a treatment called nucleoside bypass therapy. This approach has not been tried for patients with Charlie’s condition, though in principle it seems reasonable to think that it might help. But it is also not certain that the chemicals used in this treatment would be able to reach Charlie’s brain cells at all; the blood-brain barrier prevents many chemicals from moving from the blood to the extracellular fluid around brain cells.
In the British court hearing on Charlie’s case, an unnamed physician “who is the only expert in this case who has been suggesting that there is any potential benefit in nucleoside therapy” was shown Charlie’s records. The court decision cites that physician’s statement that he hadn’t examined Charlie, and that if he does he may well concur with the decision to discontinue further treatment. The physician also stated that he’d never treated a patient who had progressed to encephalopathy, so he isn’t able to state with certainty whether this therapy might result in improvement. He also concurred with all other medical staff involved in Charlie’s treatment that there would be no reversal of any structural damage to Charlie’s brain.
The central moral question in light of Catholic medical ethics is whether treatment offers hope of benefit that is proportionate to whatever suffering Charlie is capable of experiencing and would experience with further treatment. “Ordinary” vs “extraordinary” is the traditional language for describing this distinction. “Ordinary” and “extraordinary” do not refer to the degree of novelty or technological complexity of a medical intervention. A ventilator may be ordinary or extraordinary, as can an artificial heart, penicillin, or oral nucleosides. Ordinary treatments hold the reasonable prospect of proportionate benefit and are morally indicated, while extraordinary treatments hold no such promise and may be discontinued. The bar of likely benefit that must be met for experimental treatments is higher than for established treatments, simply because the safety and efficacy of an experimental treatment is not fully known. It is also true that experimental treatments contribute to the development of knowledge that may benefit others.
Another important factor in this case is that the continuation or discontinuation of a medical intervention is subject to the same standard. If continuing a medical treatment causes or prolongs suffering that is disproportionate to the benefit that the patient will likely gain from that treatment, then it is extraordinary. People may accept extraordinary treatments for themselves if they are competent—participants in research trials may make this kind of decision for the sake of advancing medical knowledge. However, subjecting a child to extraordinary treatment without likelihood of benefit, including continuing any intervention without likelihood of benefit, amounts to disregarding the child’s good in favor of some other good, such as the parents’ sense of having done “everything,” or learning more about what nucleoside bypass therapy can do for infants with RRM2P mutations.
Is Charlie suffering? A pediatric neonatal intensivist who has examined Charlie describes him as showing severe signs of encephalopathy, including absence of responsiveness, interaction, and crying. Charlie has been on a ventilator for months, and electroencephalograms (EEGs) show frequent subclinical seizure activity. His muscles have deteriorated to the point where he cannot mount a full-fledged seizure. (At the time of the court decision, he was on four types of anti-seizure medication, but still shows seizure activity on his EEG brainwave traces.) A specialist in mitochondrial disorders examined Charlie in January of this year. He found that Charlie’s only spontaneous movements consisted of mouthing, and he seemed sometimes to do this in reaction to nailbed and supraorbital pressure, which are standard clinical tests for reaction to pain. Charlie showed no spontaneous movement of his hands or feet. A nurse who has treated Charlie for some time hasn’t seen Charlie respond to his parents, nor can she tell whether he is awake or asleep or capable of experiencing pain. In sum, Charlie is described by those who have seen him and evaluated him as essentially nonresponsive, except to painful stimuli. He is not expected to recover the ability to breathe without a ventilator and will likely need tube-feeding permanently. His apparent reaction to painful stimuli makes it likely that medical interventions such as suctioning his airway would cause him pain. The nucleoside therapy has few side effects beyond the possibility of diarrhea. While his decline might be slowed by the projected treatment, the damage to his brain is permanent. In sum, Charlie’s existence seems to consist principally of experiencing pain, even if dimly.
Suffering is a complex human phenomenon that includes but transcends pain. Most human beings are capable of interpreting pain and suffering in ways that can make it meaningful—parents willingly suffer for their children, martyrs willingly suffer for their faith, spouses for their partners, students and workers for their professional goals, research subjects risk suffering for the good of others, etc. But Charlie’s situation is different. While some have written that the desire of medical personnel to discontinue treatment reflects disregard for the human dignity of people with disabilities, that interpretation seems like a vast overestimation of Charlie’s actual situation. By both interpersonal and technical measures, Charlie’s condition at present is one in which he is capable of experiencing pain and little else. The ventilator he is attached to is not a lifeline to improvement or any benefit for Charlie, but rather tethers him to pain. His age alone makes pain a more significant burden than it can be for others—infants, even infants without the serious brain injury Charlie has sustained, cannot comprehend a greater good or reason for their pain, but can only experience it. Continuation of treatment comes at Charlie’s expense.
What about the others involved in Charlie’s case? The staff of the hospital where Charlie is being cared for wants to discontinue treatment. This is not because they are life-denying monsters. They are professionals who have devoted their lives to the care of sick children. They are also the people who do the necessary interventions that sustain Charlie’s life and seem to cause him pain. The medical researcher who has offered to treat Charlie (if with ambivalence, if he is the specialist cited in the British court document,) hasn’t seen Charlie in person, but has a powerful (and morally good!) researcher’s desire to see if this treatment is helpful for children with Charlie’s particular mutation. An answer to this question might help other children before they deteriorate to the degree that Charlie has. Charlie’s parents are in the horrifically painful situation of watching a child who seemed normal at birth decline into the nonresponsive patient he is now. The parents agree that if there is no improvement, Charlie’s treatment should be discontinued.
Why not listen to Charlie’s parents, who want to transport him to the United States for treatment? Ordinarily, parents are the surrogates for their children, making medical decisions for them in light of the child’s best interest. In most cases, parents and medical caregivers agree, but in some cases, especially in cases where there is little hope for survival or where severe permanent impairment is likely, medical staff may find themselves opposed to parents, often on grounds that further or continued medical care causes the child pain without proportionate likelihood of benefit. That seems to be the case here. Charlie’s parents want him discharged either for further treatment or to their home. A transfer home isn’t feasible: even the Vatican’s Bambino Gesu pediatric hospital, which has offered to take Charlie in, hasn’t offered to discharge him, but only to continue his NICU treatment until the parents are ready to let him die of his condition. The disagreement between Great Ormond Street Hospital and Charlie’s parents is over the Gards’ hope that, somehow, the nucleoside treatment will benefit Charlie—a hope that even New York/Columbia Presbyterian says is remote. A new hearing is scheduled for this Thursday (July 13), if new evidence supporting a transfer for treatment is presented to the court. After submitting petitions for a new hearing, Charlie’s mother said, “There is nothing to lose, he deserves a chance,” while to his caregivers, the cost of whatever degree of suffering Charlie is capable of at this point is already too high a burden to justify continued treatment. All the people involved in this heart-wrenching scenario are doing the best they can and deserve our prayers and respect.
Extraordinary treatments are not forbidden in Catholic medical ethics; they are optional. The patient’s benefit is the central criterion. None of us is an island; Charlie’s medical staff, the U.S. researcher, and of course Charlie’s parents all should have a voice in this decision. Continuing Charlie’s treatment might keep him alive, but the likelihood of any benefit beyond his mere continued metabolism is extremely remote. Whatever pain he can experience will continue until his brain deteriorates further and mercifully allows him release, a process that the ventilator, the medications, and the whole medical milieu don’t halt but merely slow down. Continuing treatments that extend his pain without prospect of proportionate benefit also delay his entering into the next life, where mitochondria don’t matter, and where every tear will be wiped away—and don’t we all want what’s best for Charlie?