The heartbreaking saga of Charlie Gard, a terminally ill 11-month-old boy in a London hospital, has electrified the American right in recent weeks. Charlie has an extremely rare genetic condition that experts agree is incurable. His parents, Connie Yates and Chris Gard, want to take him to the United States for an experimental treatment they believe could prolong his life. They have raised about $1.7 million to do so, and have found an American hospital willing to provide the therapy. But Great Ormond Street Hospital, where Charlie has been receiving treatment since October, has decided that withdrawing life support is the only reasonable and humane option, and refuses to release Charlie to his parents’ custody. The child cannot hear, see, move, or breathe on his own, suffers frequent seizures, and has irreversible brain damage at the cellular level. Even the American neurologist working with the family has conceded the treatment is unlikely to improve his condition; what is more likely is that Charlie is in pain.
The case has been working its way through the British court system since February, with rulings against the couple from the Court of Appeals and the country’s Supreme Court. After a final decision last week by the European Court of Human Rights, the baby was scheduled to be removed from life support on Friday, and his parents said they were ready “to say the final goodbye.” (At the last minute, the hospital agreed to postpone the move so they could have more time together.) The Pope tweeted opaquely about the case on Friday, and a Vatican spokesman confirmed over the weekend that he supports the parents’ “desire to accompany and care for their own child to the end will be respected.” On Monday, President Trump jumped into the fray, tweeting that “If we can help little #CharlieGard, as per our friends in the U.K. and the Pope, we would be delighted to do so.”
Charlie’s young life has become a cause celebre among American conservatives, who see it as a disturbing case of government overreach. But you don’t need to be a conservative to be wary of the notion that a state entity can somehow objectively determine the best interests of a medical patient, overriding the wishes of his parents, or that there’s one answer to the question of when life is no longer worth living. There is good reason to view cases like Charlie’s as bellwethers for the future of bioethics and the law. A deeply disturbing New Yorker feature in 2015, for example, detailed how assisted-suicide laws in Belgium and the Netherland have led to skyrocketing euthanasia rates, including in cases of autism, anorexia, chronic-fatigue syndrome, manic depression, and “failed” gender-reassignment surgeries. “Once the law is there, you have people asking themselves new questions,” one Belgian scholar told New Yorker writer Rachel Aviv. “Do I really have quality of life? Am I not a burden on others?”
It seems dubious, to put it kindly, that President Trump was thinking of those questions when he burst into the public conversation around the Charlie Gard case. More likely, he was keying into the rising attention to the child’s plight among his base and their news sources, including Fox News. Trump’s showboating is infuriating given his attacks on the kind of scientific and medical research that would make life better for children like Charlie. His proposed budget would slash funding for the National Institutes of Health by $5.8 billion. It would also cut Medicaid, which covers 39 percent of American children, by $800 billion; the Senate’s version of the health care bill makes other devastating cuts to the program. Meanwhile, the U.S. infant mortality rate is already significantly higher than the rates in Europe and other developed parts of the world.
Trump’s hypocrisy does not, of course, invalidate all critiques of the hospital’s decision from the right. Take this paragraph by writer Ian Tuttle in one of National Review’s multiple pieces about the case:
The question, then, is not what would Charlie Gard want — a question no one can answer. The question is what do we owe to people such as Charlie, who cannot speak for themselves? What duty of care do we owe them simply on account of their being human beings, who are by nature possessed of an inalienable dignity? What obligations do we have to those who suffer, and how should we understand their suffering? And, pertinent to this case, under what circumstances should the tightest bonds of affection — those between parent and child — be subordinated to the judgment of the state?
These are compelling and complex questions. They speak to Pope Francis’s notion of a “throwaway culture” that disregards lives that a capitalist society doesn’t see as useful: the disabled, the elderly, the poor, and, in his view, the unborn. The question of what a society owes its most vulnerable citizens could also point directly to a moral argument for a robust, protective health-care system that takes dignified care of every citizen, not just those who can afford it.
Instead, many conservative outlets are using the Gard case as an argument against a more protective safety net. The Washington Times: “Charlie Gard makes Trump case for speedy Obamacare repeal.” The Federalist: “Yanking Life Support From UK Baby Demonstrates Dangers Of Socialized Medicine.” InfoWars video I won’t link to: “Charlie Gard Exposes the Horrors of Single Payer.” These claims rest on fear-mongering over an all-powerful National Health Service, one that decides—in tandem with a totalitarian court system—whose life in the U.K. is worthwhile and whose is too expensive. Raising the specter of “death panels,” these outlets have turned one hard case into a sweeping referendum on the inherent justice and effectiveness of socialized medicine. It’s as if the death of one child matters, but the death of thousands is the cost of “reform.” Or as if intervening in one complex and tragic case is heroic, but building a system that would prevent the suffering of many more is intolerable overreach.
We can surely argue about how such a system should be administered, to what lengths it should go to to prolong the lives of the terminally ill, and who should make decisions on when a life’s end has been reached. But those who are moved by the plight of Charlie Gard would be right to think carefully about Tuttle’s question: What duty of care do we owe them simply on account of their being human beings, who are by nature possessed of an inalienable dignity?