The Charlie Gard case was never about the treatment plan for one little boy. It was, and still is, about power, and who will make life or death decisions regarding treatment for all of us.
Despite global support, including offers of medical care from both President Donald Trump and Pope Francis, the parents of British infant Charlie Gard have withdrawn their petition to bring the little boy to the United States for medical treatment, saying too much time has passed and Charlie now has “irreversible muscle damage” and that further treatment would be futile. In tearful a tearful statement, mother Connie Yates said, “As Charlie’s loving and devoted parents we have decided that it’s no longer in Charlie’s best interest to pursue treatment, and we will let our son go be with the angels.” Yates added that she and partner Chris Gard, Charlie’s father, “only wanted to give him a chance at life” and cited the continual delays in treatment as ultimately leading to Charlie’s deterioration.
Charlie’s prognosis was not good from the beginning. Born in August 2016, Charlie has mitochondrial DNA depletion syndrome, a rare genetic condition, as well as brain damage and the inability to breath on his own. Doctors at Great Ormond Street Hospital have treated Charlie since last October; they have argued for months that treatment is futile, and pushed to turn off life support for the little boy so as not to prolong his suffering.
Charlie’s parents disagreed, and raised a large sum of money to bring Charlie to the United States for experimental treatment. UK courts denied them the right to move Charlie, repeatedly. Yates said she and Gard “will always know in our hearts that we did the very best for Charlie.”
The government and the socialized medicine system, however, did not.
The hospital says it will “give careful thought” after the court case – which led to the hospital and staff being targeted for abuse, death threats, and harassment – but what it needs is not merely “careful thought.”
The entire case, and control of Charlie Gard’s health care, was about one thing: power. And that should serve as a warning and wake-up call.
It was not about resources, as Charlie’s parents had raised private funds to transfer him to the United States for treatment. Yet the specter of socialized medicine looms large over this entire case. Those who control the purse strings make the choices; the UK courts – part of the government, whether or not supporters of socialized medicine like to admit it – gave more power and control to the state agencies than the parents. We see it repeatedly in the government denial of health care. In the United States, Medicare is the largest denier of insurance claims. When someone else is paying, whether they say you are free or not, they make choices for you (food stamps and WIC limit what users can purchase, as one example). Pediatric Hospital Bambino Gesu in Italy offered to care for the child, as did both New York Presbyterian and Columbia Medical Center.
With so many hospitals willing to treat the boy, why wouldn’t the British hospitals and courts release the Charlie to them? Power.
When the final ruling from the European Court of Human Rights (ECHR) was handed down earlier this summer, doctors further refused to let Charlie’s parents take him home to die. If that’s not about power, what is it about?
It was not about Charlie’s well-being. There was evidence that some treatments, including experimental treatments in the United States, offered hope for some level of relief for Charlie’s condition. Since several other hospitals offered care for the boy, it was clear not all avenues had been “exhausted” as doctors at Great Ormond Street Hospital claimed. Charlie was not a 90-year-old man who had lived a rich life. He’s an 11-month-old boy who will never get to grow up. In the United States, Arturo Estopian has the same disease as Charlie Gard. His parents, Arthur and Olga, contacted several medical facilities including the aforementioned Columbia Medical Center. There they found Dr. Michio Hirano, who developed an experimental treatment for mitochondrial DNA syndrome. The treatment, the Estopians say, has allowed their son to regain movement. Born in 2011, Arturo was given months to live after his diagnosis; he’s still alive. Dr. Hirano traveled to the UK to examine Charlie; and testified before a judge that Charlie did not necessarily have brain damage and up to a 56% chance of clinically meaningful improvement.
This was also not about best medical practice. While Charlie Gard is a little boy and not a guinea pig, treating him could have provided valuable insight into his rare condition, insight that could lead to successful treatment of the next child afflicted with it. Those children will now suffer, too, from a system that puts more emphasis on power and control than patient care. The final arbiters of when and if Charlie received care should have been Charlie’s parents. They had the means, and the desire, to continue treatment for their son. The state felt Charlie was better off dead; the delays caused by numerous court hearings ultimately lead to irreversible damage and forced Charlie’s parents to make a decision no parent should ever have to make: to pull their young child off life support. Had Charlie been allowed to travel to the United States for treatment, his outcomes may have been different. The world will never know.
Those who support socialized medicine are not fond of the “slippery slope” argument, yet there is ample evidence to prove that Charlie Gard is one more example of how state-run health care is less about health care and more about power and control. Charlie’s case is inextricably tied to the push for euthanasia – including of otherwise healthy people who just happen to be older than 75 (an idea embraced enthusiastically by some) – and to the forced, non-consensual euthanasia of patients simply because their families and/or doctors deem it the “best” option, as in this case in the Netherlands when a woman’s coffee was drugged and the patient held down and euthanized, despite the patient stating several times she didn’t want to die. The Regional Review Committee, which oversees legal euthanasia in the country, said the doctor’s actions warranted a reprimand but that the doctor acted “in good faith.” In case you missed it, the doctor drugged the patient’s coffee and then, without patient consent, proceeded to euthanize her. In whose good faith the doctor acted was not disclosed, but it certainly wasn’t for the patient.
The best way to memorialize Charlie Gard is to fight against the systems that led to his death. The mentality – starting with abortion, through children like Charlie Gard, the disabled, and to the elderly – is that those who are imperfect – whether by age, manner of conception, or disability – are burdens and, therefore, disposable. That it is the humane and compassionate thing to put them down (even if they are struggling against your efforts to kill them) as if they were no different than a beloved family pet. Indeed, there would probably be more outrage if a vet drugged a dog and had staff hold the struggling animal down while he euthanized it than there is when a doctor did this to a human being. If we don’t return to an ethical standard – both medically and culturally – that respects life from conception to natural death, the world will surely suffer the more for it.
Rest in peace, Charlie.