Charlie Gard’s case is tragic. But it’s not a warning about public health care.

Conservatives are using a sick baby's story for their own political purposes.

By Adam Gaffney, M.D.
The Washington Post, July 24, 2017

The saga of Charlie Gard — the critically ill 11-month-old boy with a spectacularly rare genetic disorder, who is on life support in a London hospital — seems to be coming to a close. Charlie has been at the center of a highly politicized imbroglio with international reach as a result of a disagreement between his parents and physicians over his fate. On Monday, however, that appears to have ended, after his parents learned of the results of an MRI performed last week and decided it was “too late” for an experimental therapy that had been offered in the United States.

This is, more than anything, an utterly heart-rending situation for Charlie’s family. Looking back at the controversy over his medical care from an American prospective, however, one is also struck by how Charlie was used politically in this nation: Right-wing politicians and commentators have wielded his tragic case as a crude cudgel against the public provision of health care, essentially accusing the British National Health Service of sentencing him to die.

“I stand with Charlie Gard and his parents,” House Speaker Paul D. Ryan (R-Wis.) posted on Facebook on July 13. “Health care should be between patients and doctors. Government has no place in the life or death business.” President Trump, meanwhile, offered to “help” the child via Twitter. On Rush Limbaugh’s show, Vice President Pence opined, “We hope and pray that little Charlie Gard gets every chance, but the American people oughta reflect on the fact that for all the talk on the left about single-payer, that’s where it takes us.” Just last week, the House Appropriations Committee moved unanimously on an amendment that would grant Charlie residency status in the United States to facilitate his transfer here to receive experimental treatment, as his parents were hoping (until Monday), but his doctors opposed. The latter felt that the evidence was scant that the therapy would do him any good and that continuing life support would just prolong his suffering.

There’s a serious hypocrisy in the conservative rhetoric, as others have pointed out. After all, Republicans are simultaneously attempting to dismantle the health-care safety net, which helps ensure that people don’t die simply because they are poor. Perhaps Ryan’s talk about the “death business” was actually a form of projection. Regardless, Ryan didn’t frame the debate quite right in his Facebook post. Health care should be between physicians and patients, he said — but it was Charlie’s own doctors who were pushing for a palliative care-only approach. Ultimately, it wasn’t Ryan’s government bureaucrats, but rather Charlie’s health-care providers who decided that his condition was beyond treatment. (British courts agreed with them.)

Charlie had the terrible misfortune of inheriting a pair of genetic mutations that deplete his body of mitochondria, the minute structures that produce energy molecules that cells need to live. As a result, he has for months suffered — according to the hospital — “catastrophic and irreversible brain damage.” He cannot breathe, he essentially cannot move, and he cannot hear. He has been kept alive because of the miracle — and sometimes the curse — of life support.

To be clear, there would have been no debate — and no controversy — whatsoever if Charlie’s physicians and parents had been in agreement: The physicians would have already proceeded to withdraw life support some time ago, and we would never have heard of the case. This happens in ICUs in the United States and Britain every day. In other words, this case was never about what many people thought it was about. It was not about “euthanasia.” It was not about “death panels.” It was not about the “value of life.” And although the case captivated “conservative groups from the United States led by Catholics and evangelicals,” it was not really about religion. In Catholic doctrine, for instance, it is permissible to cease life support when an individual is overcome with disease. “We may reject life-prolonging procedures that are insufficiently beneficial or excessively burdensome,” as medical directives from the United States Conference of Catholic Bishops note.

Finally, it was never about “socialized medicine.” The means by which a health-care system is funded neither creates nor resolves these difficult situations: They are instead the inevitable consequence of the mid-20th–century invention of the ICU and of life-support tools like ventilators. I would wager that most, if not nearly all, critical-care clinicians have found themselves in scenarios where they felt they were doing a true disservice to another human being — performing invasive procedures, maintaining life support, prolonging suffering — because they were compelled to push ahead by a sick patient’s family. I most certainly have.

And therein lies the crux of the Charlie case: There was no consensus between family and physicians. His physicians have firmly and consistently held that his condition makes discontinuing life support — and instead providing only palliative care so he was as comfortable as he could be — the appropriate medical decision, and they have been supported in this by multiple court decisions. Charlie’s parents wanted life support continued to take him to the United States, where Columbia University neurologist Michio Hirano had initially offered to provide an experimental treatment (“nucleoside bypass therapy”) that had never been tried, as STAT notes, on someone with his particular genetic mutation. Though it’s now a moot point, the question lingers: Had Charlie’s doctors been wrong to prevent his transfer, and withhold the treatment, earlier?

One cannot know from the sidelines, but it is worth noting that the April High Court judgment refers to Hirano, at least at that time, as “the only expert in this case who has been suggesting that there is any potential benefit in nucleoside therapy” and notes that the physician himself once said, “I can understand the opinion that he is so severely affected by encephalopathy [brain dysfunction] that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy.” More recently, Hirano testified with what sounded like odd precision that there might be an “11 percent to 56 percent chance of clinically meaningful improvement” in the strength of Charlie’s muscles. With claims about new evidence, the case went back to court, and the controversy became only more heated.

The Great Ormond Street Hospital, where Charlie is being cared for, did, in fact, consider this therapy but ultimately determined “that the experimental treatment, which is not designed to be curative, would not improve Charlie’s quality of life” and could not “reverse the brain damage that has already occurred.”

There is simply nothing to suggest that the hospital was motivated at any point by anything other than what it saw as Charlie’s best interest. This was never about cost-cutting or rationing; Charlie is simply not, as the headline of Washington Examiner put it, “a baby … condemned to death by socialized medicine.” He is a baby tragically condemned to death by a fatal illness, which would be true in any country.

Admittedly, the landscape of who gets to make the critical decisions about stopping life support is different in the United States compared with Britain. As bioethicist Michael Dauber wrote in STAT, in the United States, when doctors and “surrogate” decision-makers disagree on continuing life support, the wishes of the surrogates — in a case like Charlie’s, where the patient is both too young and too ill to make medical decisions, his parents — take precedence. In Britain, the matter can be resolved in courts (and a guardian is appointed to represent children). Charlie’s case essentially revolved around the proper balance of power between surrogates and physicians over medical decision-making.

The British approach may strike many here as problematic: The core principle around which so many of our bioethics debates revolve is autonomy, which is to say the sovereignty of the individual over his or her own body, the right to be at the center of all medical decisions. Paradoxically, however, the principle of autonomy is often of limited applicability in critical care, as during a moment of an overwhelming illness, many people are unable to engage in the complex, necessary discussions (in Charlie’s case, he is obviously also too young).

There is simply no ideal solution, contrary to Ross Douthat’s assertion in the New York Times that the situation is an “easy question, whose answer makes the case a moral travesty.” Some may be horrified at the notion of physicians making decisions “over” family members, but this happens frequently. For instance, if parents insist that their child not receive a lifesaving treatment for religious reasons, they can — and should — be ignored. Obviously, the Charlie case is different: There is nothing to suggest improper motivations on the behalf of his parents, and they were trying to provide, and not deprive him of, care, albeit of questionable utility.

But look at it from the perspective of Charlie’s physicians, who have been receiving a torrent of death threats and abuse. Continuing life support — and sustaining his potential suffering — so that he could cross the Atlantic to obtain experimental therapy that they believed has no chance of curing him and little chance of significantly palliating him would have constituted a form of real harm.

However we answer it, the question of how decisions about the cessation of life support are made is an issue that is separate from how we structure and fund our health-care system. Attempts to link universal health care with one particular approach to end-of-life decision-making are disingenuous and dangerous. Chalie’s doctors have wanted to withdraw life support from him for months because they believe that is the best way they can help him. Those who denounced them are today fighting fervently to withdraw health coverage from millions to make way for tax cuts for the rich.

Which one is the real moral travesty?

Adam Gaffney is an Instructor in medicine at Harvard Medical School and a pulmonary and critical care physician at the Cambridge Health Alliance and serves on the board of directors of Physicians for a National Health Program.