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World Aug 4, 2017

Charlie Gard raises questions of parents' rights, government's limits

By Elise Harris

Charlie Gard. (Courtesy of Connie Yates)

LONDON (CNA)—For the past few months the world has watched closely as the parents of a gravely ill British infant fought an intense legal battle over whether or not his life was worth further treatment, which has raised crucial questions.

Among the most potent of these questions regards the ethics of a court stepping in and denying parents the right to seek a treatment which may benefit their child.

British and European courts had sided with officials from Great Ormond Street Hospital, who sought to bar Charlie Gard's parents from seeking treatment for their child overseas.

In comments to CNA July 25, Benjamin Harnwell, founder of the  Rome-based Dignitatis Humanae Institute, said he thought that “the hospital – and the courts – crossed a totalitarian line in refusing to hand the baby over to his parents at their request, so that they could seek further medical attention in the U.S., for which they had secured the funding.”

“I don’t think it’s ever appropriate” for a hospital or court to step in and “advocate” for a patient, especially in the case of a minor whose parents are involved, Harnwell added.

While the Church “certainly doesn't teach that people should be kept alive 'at all costs,'” he said “the question isn't so much about knowing ‘when to let go’ but about the moral responsibility of parents wanting to choose when to make that decision for themselves.”

Harnwell reflected that Church teaching says “the primary role of medicine is to heal, and then to alleviate suffering when being healed is no longer a possibility.”

Harnwell spoke after the parents of British infant Charlie Gard announced July 24 that they decided to end their court case seeking further treatment for the terminally-ill child.

Gard, 11 months, suffers from a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness and is believed to affect fewer than 20 children worldwide. He has been in intensive care since October 2016, and has suffered significant brain damage due to the disease; he is currently fed through a tube, requires a ventilator to breathe and is unable to move.

His case first garnered international attention when his parents, Connie Yates and Chris Gard, were denied the right to transfer him to other hospitals by U.K. courts, despite having raised funds for an experimental treatment from an American doctor. They appealed to the European Court of Human Rights, but were denied a hearing.

Judges argued that prolonging Charlie's life would inflict unnecessary suffering on the infant, and gave doctors at London's Great Ormond Hospital, where Charlie is being treated, permission to take him off life support without his parents' permission.

His life support was to be turned off at the end of June; however, the courts granted an extension so Charlie's parents could have more time with their son.

After international leaders including Pope Francis and U.S. President Donald Trump voiced their support for Charlie and his parents, the courts allowed medical experts to conduct additional tests on the infant.

American neurologist Dr. Michio Hirano, who had been willing to offer Gard nucleoside bypass therapy, while acknowledging it would not necessarily heal him, traveled to London for the tests. However, after seeing a new MRI scan this week, Hirano declined to offer the therapy.

The child's life support is expected to be pulled in the next few days, just two weeks shy of his first birthday.

In a tearful statement after the announcement of their decision to drop their court case, Charlie's parents said, “this is one of the hardest things we will ever have to say and we are about to do the hardest thing that we will ever have to do, and that is to let our beautiful little Charlie go.”

“The American and Italian team were still willing to treat Charlie after his recent brain MRI and EEG performed last week, but there is one reason why treatment cannot now go ahead, and that is time,” they said.

“A whole lot of time has been wasted. We are now in July, and our poor boy has been left to lay in a hospital bed for months whilst lengthy court battles have been fought. Tragically, having had Charlie's medical notes reviewed by independent medical experts, we now know that had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy little boy.”

In addition to the devastating end to this story, Harnwell pointed to a larger debate society faces.

This, he said, is the debate on whether the state ought to be “the health care provider of last resort,” stepping in as a third party who gets to decide where it's limited resources will be spent.

Inevitably, under a socialized model “it will be the state that decides when to divert its limited resources to other patients it feels will benefit more.”

Harnwell stressed that while he didn't want to “make a political point out of other people’s terrible tragedy,” there is a “very real debate to be had” on the issue.

For Harnwell, Charlie Gard's case is a perfect illustration of the risks involved in allowing third parties “to assume the role of providing our own safety net.”

Socialized healthcare, he said, “offers a universal reach available (ostensibly) to all irrespective of means, but eventually rationing – decided by bureaucrats, and presumably backed up by the courts – will kick in at some point.”

However, while private healthcare is generally available only to those who can afford it, under this system “the customer is king,” Harnwell said, adding that while people generally have good reasons for choosing one or the other, “my own instinct is always to trust people to chose responsibly for themselves.”

The issue also touches on the debate surrounding the push for euthanasia and living wills currently taking place in several countries.

Fr Francesco Giordano, Director of Human Life International in Rome, related the Charlie Gard case to the euthanasia mentality, saying the problem with living wills is that “it basically takes away from the family the right to make decisions.”

In fact, in reality it “takes away the right of the individual, because when an individual in the case of the living will, the person might not be feeling sick at that time, but when they are sick that person might change his or her mind,” he said, noting that sadly, this is often not permitted.

“So basically what's happening is the rights of individuals, the rights of the family unit, are being taken away by the states. That's what we're seeing here, that's what's most concerning for all of us.”

Regardless of the ongoing debates, Harnwell stressed that most importantly right now, “Charlie's family is suffering unimaginably, and they need our prayers.”

Material from EWTN News Nightly was used in this report.