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Charlie Gard dies after sparking a global debate on the ethics of life and death

Charlie Gard, in an undated photo, at Great Ormond Street Hospital in London. Gard died on July 28, 2017. (Family of Charlie Gard via AP)

LONDON (RNS) — Charlie Gard didn’t make it to his first birthday.

The baby died on Friday (July 28) after his parents gave up a protracted legal battle with a London hospital over whether he could be successfully treated in the United States for a rare genetic condition. He was 11 months and three weeks old.

Charlie’s tragic fate became a cause célèbre, sparking a global debate on the ethics of life and death.

It prompted reactions from President Trump and Pope Francis and drew crowds of emotional people who waited outside the high court in London for judgments on the baby’s care. And there were howls of protest on social media from people who accused the Great Ormond Street Hospital for Children of wanting to end Charlie’s life. Hospital staff even reported receiving death threats.

This is an undated hand out photo of Chris Gard and Connie Yates with their son Charlie Gard provided by the family, at Great Ormond Street Hospital, in London. (Family of Charlie Gard via AP)

Charlie’s predicament was framed by the parents’ supporters as a pro-life issue, but it also highlighted differences between the U.S. and Britain over what role faith should play in medical matters.

When Charlie was born on Aug. 4, 2016, he seemed an apparently healthy baby, but as he failed to develop, doctors discovered that he had encephalomyopathic mitochondrial DNA depletion syndrome, which causes severe brain damage and causes the organs to shut down. He could not breathe unaided or move on his own.

After a series of medical investigations, a conflict between Charlie’s parents, Connie Yates and Chris Gard, and the medical profession emerged. While the family, supported by American religious campaigners, began crowdfunding to raise money for their child to have experimental therapy in the United States, the hospital went to the high court to ask for the go-ahead to rule that the baby’s life-support system should be turned off.

Some commentators, supporting the parents’ wish to take their child abroad for treatment after the hospital said there was nothing more to be done for Charlie, saw the move as akin to euthanasia. Fordham University ethicist Charles Camosy, who is also a commentator at RNS and Crux, wrote: “Little Charlie Gard has been sentenced to die by those who hold power over him in the United Kingdom.”

A similar view was expressed by the American pastor Patrick Mahoney, who took up the parents’ campaign and prayed with them at rallies. He maintained that only the parents had the right to determine the welfare of the child. Even the leading British doctor, Lord Winston, who is diametrically opposed to the pro-life lobby’s approach to the case, said that “the autonomy of parents is probably sacrosanct because a child can’t give approval, can’t give consent.”

Charlie Gard’s parents Connie Yates and Chris Gard read a statement at the High Court after a hearing on their baby’s future in London, Britain, on July 24, 2017. Photo by Peter Nicholls/Reuters

But in English law parents do not have rights regarding their children, according to Ian Kennedy, health law and ethics professor emeritus at University College, London.

“They only have duties, the principal duty being to act in their children’s best interests,” he wrote in The Guardian. “This has been part of the fabric of our law and our society for a long time.”

But neither does the hospital have ultimate power. In England, the courts are required to step in and represent the child when doctors and parents cannot agree.

Mahoney, who belongs to the Reformed Presbyterian Church, flew to London to support the Gard family and said that he was refused permission to pray at the baby’s side in the hospital. Although many British hospitals have Christian chaplains, overt displays of faith are often frowned on in the National Health Service. Catherine Glenn Foster, president of Americans United for Life, which opposes euthanasia, also headed to London to back Charlie’s parents.

Another American who intervened was the evangelist and CEO of the Billy Graham Evangelistic Association, Franklin Graham. He said Charlie’s plight was the result of British “socialized medicine,” a pejorative term used by American conservatives to criticize both the British state system and Obamacare. Trump also intervened via Twitter, offering to help Charlie get treatment in the United States.

 

 

Pope Francis also tweeted about the case. “To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all,” he wrote. Vatican spokesman Greg Burke said the pope was praying for Charlie’s parents, “hoping that their desire to accompany and care for their own child to the end is not ignored.”

But the controversy was not so much about the parents’ accompaniment to the end but when that end would come.

The president of the Pontifical Academy for Life, Archbishop Vincenzo Paglia, stressed that Catholic teaching does not require life to be maintained at all costs, saying people “must recognize the limitations of what can be done.”

But just how binary the issue had become was illustrated by Lord Winston, well-known as an expert on genetics and in vitro fertilization who declared the involvement of the Vatican, including the offer of help from the Gesu Bambino Hospital, as “cruel.”

The view of the Bishops’ Conference of England and Wales echoed that of Archbishop Paglia: “Prolonged terminal illness is part of the human condition. We should never act with the deliberate intention to end a human life, including the removal of nutrition and hydration so that death might be achieved. We do, sometimes, however, have to recognise the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs.”

Supporters of critically ill baby Charlie Gard react after hearing his parents had dropped their legal bid at the High Court in London, on July 24, 2017. The parents of critically ill baby Charlie Gard dropped their legal bid to send him to the United States for an experimental treatment after new medical tests showed that the window of opportunity to help him had closed. (AP Photo/Matt Dunham)

Theologian Tina Beattie, of Roehampton University, praised what she described as the “nuanced” approach of the Catholic bishops of England and Wales and said she was appalled by the commentaries and protests of some of those who claimed to be supporting Charlie.

“This became a Manichean issue of life and death when it was so much more complex than that, and an intensely private trauma had been seized upon by people with a specific agenda,” she said.

On July 25, Charlie’s parents agreed with his doctors that his final days should be spent in a hospice rather than hospital. They had hoped to take their baby home but this was ruled out as impractical because of the equipment doctors say he still needed.

As the infant’s life drew to a close, the focus shifted to making his end as peaceful as possible — in stark contrast to the previous weeks of noisy protest that made news around the world.

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Catherine Pepinster

16 Comments

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  • The BBC’s website has a balanced narrative which I recommend to anyone tempted to comment on this tragic situation.

    It may also be helpful to ignore the posturing interventions of those not directly involved, whether made for religio/political or solely political consumption. Comments such as ““Little Charlie Gard has been sentenced to die by those who hold power over him in the United Kingdom.”” are profoundly erroneous, ignoring as they do the exhaustive and proper legal process which is intended to act in the best interests of the sufferer and the fact that the problem which Charlie suffered from was genetic in origin and irreversible despite the spurious claims of some and the earnest prayers of many.

  • It really comes down to, who has the right to decide the course of treatment (if any) for the child. The most chilling statement I saw in this article said that parents don’t have that right in the UK, only duties.

    Re But in English law parents do not have rights regarding their children, according to Ian Kennedy, health law and ethics professor emeritus at University College, London. “They only have duties, the principal duty being to act in their children’s best interests…”

    So who is the arbiter of “the children’s best interests”? I really thought the country which originated the Magna Carta could do much better than this.

  • You are entitled to your view – I think our system is a mature and concerned response.

    As an aside – which Magna Carta are you referring to and how do you think it relevant to the tragedy that has been playing out in our courts?

    The system here appears designed to remove the emotional element as far as is possible in order that the interests of the patient are the primary concern. I am of the opinion that that is morally the correct position.

    Allowing emotion (including such well attested irrationality as confirmation bias and “sunk cost”) to cloud the facts can lead to decisions that “feel” right but don’t work out well.

    It is notable that, according to the article, much of the support/impetus was provided by people who’s beliefs favour the ignoring of evidence in favour of irrational, though no doubt genuine, conviction.

  • You are also entitled to your view, but I did not see anything remotely resembling a mature or concerned attitude in the article.

    Remove all emotion, all concern, all compassion for people, and you’re left with Orwell’s Big Brother government.

    Again, who is the arbiter of “the children’s best interests”? As I said, I was speaking of the Magna Carta which was delivered to King John, which challenged the notion of divine right of kings.

  • Having deep dived the information surrounding Charlie and his plight, I learned that the experimental treatment consisted of a drug created for different form of MDDS that which Charlie was afflicted. Prof. Hirona’s NBT addressed TK2, not RR2MB. Also, Prof. Hirona was invited to London to see and examine Charlie in January. He didn’t go. He was invited again by GOSH weeks later, again he didn’t go. It was later learned that Prof. Hirona had a financial interest in part of the formula for NBT. AND the drug had never reached the testing of lab mice phase. So there was no proof that NBT could breach the blood brain barrier. This beautiful family was cruelly duped into believing this drug might offer a glimmer of hope when really it was an attempt to use Charlie as a mouse in a lab. Depending on the ethics of researchers, desperation of parents, the global search to find other MDDS children, and no injunction by British courts, Charlie could have been the ultimate initial recipient of a drug that had just left the laboratory. Maybe others across the globe will offer their children to be candidates, who knows at this point.
    If anything comes out of this case, I hope it’s additional funding for wider research and less interference by courts and media of all sorts.
    These neurological diseases fascinate me as I suffer from Multiple Sclerosis. I constantly study new studies, new clinical trials, new surveys, and new claims of successful reversals and cures. I also study the fatal side effect PML that awaits me with every Immunosuppressant I try.

  • In the US minors are citizens and while not granted the full rights of adults they do have constitutional and human rights and the protection of the law. Parents have their rights but if they fail to respect the rights of their minor children, society steps in. If the parents feel they have been wronged they can go to court.

  • 1 – removing the irrationality of emotion does not lead to the removal of compassion or concern – false dichotomy.

    Removing emotional considerations can lead to the application of compassion and concern unaffected by feelings of loss, anger, fear etc. and, when left in the hands of trained, experienced legal minds is more likely to lead to an outcome that truly reflects the needs of the patient than the pressures of personal feelings that incorporate helplessness, anger and the expectation of grief.

    2 – In the UK – the courts

    3 – there were several Magna Cartas – John had a habit of signing them and then ignoring the promises he made. I’m not aware that they challenged the divine right of kings – AFAIK they just sought to grant a small, self-selected group of powerful men a share of the proceeds. Perhaps the only link could be that they sought to remove some decision-making from a single interested party and involve others – though since they were the others and very definitely “interested” altruism, democracy and the best interests of anyone other than themselves were entirely absent.

  • He was invited again by GOSH weeks later, again he didn’t go. It was later learned that Prof. Hirona had a financial interest in part of the formula for NBT.

    So, did Prof. Hirona not go because he knew that NBT wouldn’t work on RR2MB? Or because he didn’t see any financial gain in going?

  • I think your uneducated on this subject knowing the government contributes nothing to the child’s welfare or well being it didn’t steal off of the parents through taxation. It’s thinking like yours that brings society down to this level of thinking. If parents are abusing their children then yes they should be legally held responsible but I’m not talking about what liberals think is child abuse but rather moral and/or physical abuse.

  • That was a load of BS. The issue here involved parents wanting to use hospital resources and personnel on a person who was beyond reasonable care according to medical experts.

    The baby could not survive or even be moved without medical equipment or personnel involved in the process.

    If the baby could survive without their aid, the doctors could have simply released the baby to the parents care. But they was not the case. The doctors were the only people in a position to make the decisions.

  • Taxation is not theft. One expects services in exchange for contributing to the system. Healthcare being one of them in the UK. A service voters demanded of their government and sought to pay for through their taxes.

    Nothing sane comes from aping Ayn Rand style libertarian nonsense.

  • Thank you for the additional information. You are right in that the parents were duped based on your fact finding. The father said when interviewed that if he had been treated in the States a few months earlier, that they would have had a healthy little boy. Unfortunately the development of drugs is expensive and I am pretty sure that given drug companies” mandate to earn money, that the bulk of research goes to where the biggest return is potentially – the rarer the disease, the less likely resources are allocated based on low market demand. Part of that is driven by the fact that so few new drugs even make it to a phase 1 human clinical trial – there is a point however where it may be possible to get the drug based on humanitarian grounds at the discretion of the drug company (although even that is a convoluted process requiring approvals from others as well.)

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