Tuesday, July 4, 2017

Charlie Gard 2

See:  http://childnervoussystem.blogspot.com/2017/06/sentenced-to-death-by-european-court-on.html

A Vatican-owned pediatric hospital in Rome offered to take 10-month-old Charlie Gard into its care on Tuesday.

It's an effort to prevent doctors at Great Ormond Street Hospital in London from turning off his life support and to allow his parents to be the ones making the decision on whether to do so.

Mariella Enoc, president of the Vatican's Bambino Gesu Children's Hospital, released a statement asking the director of the London hospital, where Charlie is staying, "to verify whether the health conditions exist to possibly transfer Charlie to our hospital."

"We know that this is a desperate case and, apparently, there is no effective therapy," Enoc said.
Charlie's mother, Connie Yates, has been in contact with Enoc, Bambino Gesu's press office told CNN.

After that interaction, Enoc contacted the Great Ormond Street Hospital in London. Enoc said the London hospital was very kind and thanked her for her interest, but confirmed that for legal reasons, transferring Charlie to their care would be impossible…

The ruling to end Charlie's life support, against the parents' wishes, brought reactions from around the world.

On Sunday, the Pope called for the parents to "accompany and treat their child until the end."

"The Holy Father is following with affection and emotion the situation of little Charlie Gard and expresses his closeness to his parents. He is praying for them, in the hope that their desire to accompany and care for their own child until the end will be respected," the director of the Holy See Press Office, Greg Burke, said in a statement.

The Bambino Gesu Hospital statement began by quoting a tweet from Pope Francis on June 30: "To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all."
The hospital has offered to keep Charlie on life support and allow his parents to decide "how to handle" ending his life, including when to switch off life support, it said.

"We are close to his parents with our prayers and, if they wish so, we are ready to welcome their child in our structure, for the time he has left to live," the hospital said.



  1. That was the point where the story got my attention. I used to have an office down the hall from the pediatric oncology wards at Duke Medical Center: I know only too well that there are kids who are nearly certainly going to die, and that there is very little to be done for some of them. But doctors in the U.S. would be helping the parents to find experimental programs, and might well contribute money to a GoFundMe.

    In the UK, however, the authorities at Great Ormond Street Hospital said "Charlie should be allowed to die in dignity" and "applied for permission to have his ventilator switched off."

    Over his parents' wishes.

    The gist of the decision -- and the unsuccessful appeals, all the way up to the European Court of Human Rights -- was that the doctors at the Great Ormond Street Hospital know better than his parents what's good for Charlie.

    His parents then asked to be able to take Charlie home, so he can at least die at home. That was refused too. I haven't seen any reasoning for that; it's hard not to think they're suspicious his parents wouldn't let Charlie just die as directed, but would, immediately upon regaining control of their son, flee the country.

    While I find the NHS arguing for pulling the plug a little shocking, it's not surprising: the NHS has had it's "Liverpool options" and regular scandals over patients whose quick death is encouraged. It's even almost understandable -- the NHS has a finite budget and they have to deal with all their patients, not just Grandma May, although I don't want to be the person explaining why they aren't giving grandma IV fluids.

    But that's not the case now: Charlie's parents have the money to let him be treated in the U.S. The authorities' only argument is that they simply know better than his parents.

    I've written before about the secret political party, the Know-Betters, who think that they should be in charge of our transportation, and where we should live, and what we should eat and drink. I can't help but think that what underlies the NHS' fight to prevent Charlie Gard from being treated isn't near as much some notion of mercy as much as rage at the thought that a couple of uncredentialed mere parents are refusing to do what they're told.


  2. An American father whose son was successfully treated for a similar condition to Charlie Gard says he ‘deserves the opportunity to live.’

    Art Estopinan was told his son only had two months to live, but four years after being brought home he can now move his hands and feet.

    Arturito was diagnosed with a similar mitochondrial depletion syndrome to Charlie and was the first person in the US to receive nucleoside therapy.

    Art said he put Charlie’s parents in contact with the Columbia University Medical Centre in New York, where he ‘found hope’ for his son.

    He told Good Morning Britain: ‘This is a very rare genetic muscular disorder and with all due respect to all of the great doctors at Great Ormond Street Hospital, this disease isn’t well known amongst those doctors.’...

    ‘We were told to go home, he’s going to die, there’s nothing you can do, don’t even look at the internet.

    ‘I looked the doctor in the eye and said thanks for the diagnosis but we won’t go home to take him to die.’

    Arturito was born in 2011 with a variant of the same disease as Charlie.

    However, Dr Hilary Jones said Charlie’s type was ‘far rarer’ and the two couldn’t be compared.

    He said: ‘The risk is you compare two different types of disease. Charlie’s starting point was far worse than Art’s son was.

    Read more: http://metro.co.uk/2017/07/04/father-of-boy-with-similar-condition-to-charlie-gard-says-he-deserves-opportunity-to-live-6754625/#ixzz4luHvxG67

  3. Parents and doctors occasionally face agonising decisions over whether to treat a child or allow him or her to die. Nobody would ever claim these decisions are anything but heartbreaking. But the Charlie Gard case highlights a prevalent approach to modern-day moral dilemmas: the desire to resolve them with emotion, rather than reason.

    His parents agreed with his doctors that without any medical improvement his life was not worth sustaining. As his mother bravely told the High Court in April, ‘we would not fight for the quality of life [Charlie] has now’. He was born last August with a rare inherited mitochondrial disease that causes progressive muscle weakness and brain damage. This means he cannot see, hear, move, cry, swallow or breathe unaided. He also has severe epilepsy, has suffered severe brain damage and has been kept alive with a ventilator, regular suctioning of his lungs, feeding by tube and other invasive treatments.

    The medical opinion was that there was no benefit to Charlie of further treatment. As the High Court judge put it, after hearing from eight doctors and two nurses: ‘The entire highly experienced UK team, all those who provided second opinions and the consultant instructed by the parents in these proceedings share a common view that further treatment would be futile.’

    Charlie’s parents, however, placed their hopes in one doctor based in the US, who had not met Charlie, but who, after considering his medical records, was prepared to treat him with nucleoside therapy. The therapy had never before been used on humans (or animals) with Charlie’s particular form of mitochondrial disease, and so there was no evidence that the treatment would be of any benefit. Moreover, having seen the latest evidence of Charlie’s brain damage, the American doctor stated that he could ‘understand the opinion that [Charlie] is so severely affected by encephalopathy [brain disease] that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy.’ He also ‘thought that Charlie was in the terminal stage of his illness’, and that ‘there could be no reversal of the structure of Charlie’s brain’.

    Given this evidence, the judge’s conclusion was inevitable: transporting Charlie to America would be problematic, and subjecting him to nucleoside therapy may subject him to pain, possibly even to mutations. Hence, the judge asked: ‘If Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?’ He concluded ‘with complete conviction… that it is in Charlie’s best interests that I accede to these applications and rule that Great Ormond Street Hospital may lawfully withdraw all treatment, save for palliative care, to permit Charlie to die with dignity.’

    This was a clear, reasoned conclusion, but Charlie’s parents rejected it on the basis of their beliefs. They said in court that ‘they believe that [Charlie] has a sleep/wake cycle and can recognise them and react to them when they are close’. But this was not supported by the medical evidence concerning the extent of Charlie’s brain damage, or by the testimony of the nurse who had, according to the judge, ‘spent over 200 hours in Charlie’s bed space often with his parents present’. Indeed, Chris Gard made clear that his desire to take Charlie to America was based on belief rather than reason: ‘We truly believe that these medicines will work.’

    In this case, there were two profoundly different ways of deciding where Charlie’s best interests lay: one involved using the mind to engage with reason, and the other involved using the heart to engage with beliefs, feelings and sentiment. A morality based on reason seeks to understand the truth, something that is objective and external to the individual. A morality based on emotion is less concerned with truth than with subjective and internal feelings. (continued)

  4. (continued)In response to the High Court decision, Charlie’s parents made a statement describing how they ‘[broke] down in court’ hearing comments about Charlie, such as ‘no purposeful movements’, ‘he can’t breathe because his brain doesn’t work’, ‘he’s blind’, ‘he never wakes up’, and ‘he’s in pain’. They claim ‘none of this is true’, even in the face of the expert testimony and the court’s verdict.

    A few days later, in an interview with the Daily Mail, Charlie’s mother expressed her anguish: ‘When I think about willingly turning off Charlie’s life support, with him dying in our arms, I cry uncontrollably… He has chubby, squeezable little legs, his hair needs to be combed more.’ The interview was heartbreaking. It relayed many facts that were irrelevant to the issue of Charlie’s best interests, but would no doubt pull at the reader’s heartstrings.

    The response of Charlie’s parents is understandable in a society torn over whether to resolve moral dilemmas with reason or emotion. But this does not mean that we should refrain from challenging what French philosopher Chantal Delsol identified in 1996 as the ‘morality of emotion and indignation’ – a ‘rambling outpouring of the conscience in a world without ethical structure’

    The morality of emotion is taking such a toll on society that this ‘world without ethical structure’ is now clear for all to see. The morality of emotion was, as the High Court concluded, not meeting Charlie Gard’s best interests. Had it not been for the morality of emotion the court case would have been unnecessary and Charlie would have been allowed to slip away peacefully in January. Instead, it was given an airing in three British courts and one in Strasbourg…

    One of the most depressing aspects of the four court judgements is that none of the medical professionals – who the High Court judge described as working in ‘our excellent hospitals’ – could be named. One of the ‘leading experts in the world with a special interest in mitochondrial diseases’ was referred to as ‘A’, and so it continued through the alphabet to the staff nurse referred to as ‘H’. These dedicated professionals were dignified with a letter rather than a name, lest their reputations be tarnished.

    The courts may have come down on the side of Great Ormond Street, but, as the Daily Mail observed, ‘the world-renowned children’s hospital has struggled to maintain its reputation, with some Charlie supporters venting their anger and threatening to end charitable donations’.

    These are all concrete instances of ‘a world without ethical structure’: a baby is kept alive for five months against his best interests, while lawyers draw resources away from patient care; dedicated professionals are treated as uncaring; and the reputation of an excellent hospital suffers. Our capacities for emotion and reason are at the core of our humanity. But, when it comes to morality, we must allow our minds to take over from our hearts. If we allow the morality of emotion to dominate, then we end up in a world without ethical structure.


  5. Charlie Gard: Art Estopinan goes head to head with Doctor Hilary
    Art Estopinan claims Charlie Gard can be treated with the same treatment that saved his sons life. The American father goes head to head with Doctor Hilary Jones on Good Morning Britain.


  6. MCEVERS: And that really points to a kind of fundamental difference in how the United States and, say, Europeans think about the role of parents in these cases. How would you describe that difference?

    FENTON-GLYNN: Yeah, absolutely. I mean, under English law, we don't talk about parental rights. We talk about parental responsibility. We don't say that a parent has a right to make a decision for their child, particularly in the cases of medical treatment. So if there is a dispute between the doctors and the parents as to what should be done, the option and always best practice is to go before the court. And then the court has to decide what is in the child's best interest. And in doing so, it doesn't start with the presumption that the parents are right.

    MCEVERS: Do you think this case could inspire some people to rethink the idea of parental rights in the U.K.?

    FENTON-GLYNN: I think what it's really shown is there does seem to be a public perception that parents should be able to make decisions for their children. However, from a legal perspective, this is not a surprising legal decision. And I think this has really brought to public attention the idea of, you know, how do we decide what is in a child's best interests? People are starting to talk about, you know, is it this ever in the child's best interest to simply let a child die? So take them off an artificial ventilation. So I think that has been an important discussion in this country.


  7. It is impossible for terminally ill Charlie Gard to be transferred to the Vatican's children's hospital for treatment, Boris Johnson has said.

    The foreign secretary told Italian Foreign Minister Angelino Alfano legal reasons prevented him from being moved.

    The president of the Bambino Gesu hospital in Rome had asked British doctors if 10 month old Charlie could be transferred to his care.

    It comes after the Pope tweeted his support for Charlie on Monday.
    Charlie has been receiving specialist treatment at Great Ormond Street Hospital since October 2016.

    Mr Johnson has told his Italian counterpart that it is "right that decisions continued to be led by expert medical opinion, supported by the courts" in line with Charlie's "best interests."

    The hospital said Charlie cannot see, hear, move, cry or swallow and should be allowed to die with dignity.

    During Wednesday's PMQ's Theresa May said she was "confident" that Great Ormond Street Hospital "have and always will consider any offers or new information that has come forward with consideration of the well-being of a desperately ill child" in response to a Commons question about Charlie's case...

    The Vatican's paediatric hospital stepped in after Pope Francis called for Charlie's parents, Chris Gard and Connie Yates, to be allowed to "accompany and treat their child until the end".
    The Vatican hospital's president Mariella Enoc said: "I was contacted by the mother, who is a very determined and decisive person and doesn't want to be stopped by anything."

    Lord Winston told ITV's Good Morning Britain courts and doctors should not be interfering with the parents' wishes, saying the loss of a child was "about the worst injury that any person can have".

    But he added: "These interferences from the Vatican and from Donald Trump seem to me to be extremely unhelpful and very cruel, actually, because this child has been dealt with at a hospital which has huge expertise in mitochondrial disease and is being offered a break in a hospital that has never published anything on this disease, as far as I'm aware."

    The Vatican said the Pope was following the case "with affection and sadness".

    In a statement the Vatican said the Pope "expresses his closeness to his [Charlie's] parents".

    "For them he prays, hoping that their desire to accompany and care for their own child to the end is not ignored," it said...

    Charlie's parents Connie Yates and Chris Gard from Bedfont, west London, have spent the last days of their son's life with him, after being given more time before his life-support is turned off.

    On Thursday they said the hospital had denied their final wish to be able to take their son home to die, and felt "let down".


  8. The tragic case of Charlie Gard, the British infant who will soon be taken off life support, has exposed the scale of the malfunction in the British family court system.

    This is a court system driven by ideological professionals and overseen by compliant judges who have lost their moorings in Judeo-Christian values.

    Charlie is a 10-month-old infant who suffers from an extremely rare and debilitating genetic disease and has already suffered significant brain damage. He cannot move his arms or legs and cannot breathe without the assistance of a ventilator.

    On June 8, the United Kingdom Supreme Court permitted the hospital to withdraw such support to enable Charlie to die with “dignity,” in its own words.

    However, Charlie has the benefit of two loving and devoted parents who were prepared to do all in their power to preserve the life of their son. They found a leading medical practitioner known as Dr. I, who is a professor of neurology at a mainstream medical center in the United States, and who was willing to facilitate and oversee the provision of nucleoside therapy for Charlie.

    Dr. I accepted that there was only a remote possibility of any success.

    Due to the generosity of the public, to whom an appeal was made, the parents have sufficient funds to pay for Charlie to go to the U.S. for treatment, and it would be possible to transport him under medical supervision across the Atlantic for such treatment.

    Nucleoside is a new therapy with uncertain results, but it was, at least, a hope for Charlie. However, Judge Justice Francis held:

    Accordingly, the entire highly experienced U.K. team, all those who provided second opinions and the consultant instructed by the parents in these proceedings share a common view that further treatment would be futile. For the avoidance of any doubt, the word ‘futile’ in this context means pointless or of no effective benefit.

    The judge refused to permit the parents to seek further treatment in the U.S. and his decision thus ensured that Charlie would die in the U.K.(continued)

  9. (continued)This case is not about the merits or demerits of nucleoside therapy for Charlie, but the power of a judge to overrule the decision of custodial fit parents on what they deem best for their own child.

    Common sense would indicate that any chance of success—no matter how remote—is better that no chance of life.

    Judges in the Family Division of the High Court and professional social workers daily make incomprehensible decisions of removing children from loving families, deciding on what is best for a child, or causing more damage than needed by acting under Section 1 of the Children’s Act 1989, which gives the Court jurisdiction to do as it will under the fig leaf of stating that the “welfare of the child shall be the paramount consideration.”

    Thus, it was in Charlie’s interest to die, and be denied a “no-cost” experimental treatment that arguably could have improved his condition.

    Behind many decisions of the courts are the acts of (poorly educated) social workers, educational psychologists, and local government officers dancing to the tune of political correctness, or at the political direction of their masters...

    It is time that courts in the civilized world recognized the fundamental rights of parents to rear their children, and that the state is a neutral actor that should not pursue social agendas under the guise of the “best interests of the child.” The state should only interfere where there is clear exposure of harm to a child (violence, abuse, or neglect)…

    There must be a clear jurisdictional limitation to the actions of a court—namely that the parent is always a better decision-maker than anyone else, be it a social worker, hospital, or court.

    The views of a custodial fit parent must be respected in substance, not merely in the form of platitudes. The parents of Charlie have suffered a great wrong and the consequences will affect many other decent parents.

    This arrogance of the elites, who presume to know what is the best for a child over those parents who are deemed too emotive, too uneducated, or who have the wrong religious views, is not a peculiar British problem. This problem is alive and well in the U.S. as well, and must be countered wherever it is found.


  10. Charlie Gard’s cause combines two large political causes, parental rights and the right to life. They comport in this instance, but they don’t comport always or necessarily. Parents can and sometimes do choose for their severely diseased newborn children outcomes that pro-life advocates think are wrong. Pro-choice advocates routinely insinuate and sometimes explicitly invoke the parental rights of women seeking abortion. Over the years, parental rights have been integral to arguments for abortion rights. Pro-lifers are correct to call out double standards, as in this case. If parental rights are said to be sacrosanct when parents want to end the life of their child but not when they fight to preserve it, the principle is not really parental rights, is it?

    Chris Gard and Connie Yates have privately raised funds to cover the cost of experimental treatment for Charlie in America, and it is reported that a U.S. hospital has offered to treat him for free, so containment of cost to the British taxpayer is not in any direct sense the rationale for the intransigence of the British doctors in this matter. Wesley Smith is right, however, that their attempt to frustrate these two parents in their quest to save the life of their child aligns with a broader, general campaign to discourage medical care when it is calculated, in cold terms, that the resulting extension or quality of life will probably be too short or too low to justify the expense.

    Life is expensive, as we are reminded every time we join the debate about the latest national health-care proposal. To be pro-life is to take the strongest possible stand for life against even the most compelling economic arguments on the other side. It is cheaper certainly in the near term to abort a child who for the next decade or two would be a net drain on his parents’ resources of time and money. And always is it cheaper to hasten the death of the frail and elderly who will never again be net contributors to the material well-being of either their family or society.

    It would have been easier for Chris Gard and Connie Yates not to buck the system. The course they have taken — damn the hassle, damn the cost — implies an extraordinary value that they put on life itself. The Catholic Church is the global institution most famous for honoring life itself against strong social and political pressures to abandon that principle, and so the gestures by Pope Francis and Bambino Gesù have been reassuring.

    “It was a Catholic hospital and so of course they wouldn’t let him die,” a friend once said to me in the course of narrating the end-of-life agonies of a longtime colleague. She meant to be snide but unwittingly paid the Church what in its books counts as a compliment.

    What unites the two main strands — opposition to abortion and opposition to euthanasia — of the pro-life movement is not a question of rights, as I explain in this blog post at The Human Life Review. Pro-lifers can invoke the right to life when defending unborn children, but rights talk is hardly the ticket for answering the movement for physician-assisted suicide and a right to die.

    Ultimately the pro-life cause rests on a sentiment. If it can be reduced to a linear argument, I haven’t seen it. Charlie Gard’s parents are heroic not for insisting on “reasonable” (whatever that would be in this case) medical treatment for their child. They are extraordinary because against such enormous odds they have set out to preserve the flame of life still flickering in his fragile, tiny frame. We rightly cheer them for asserting their parental rights against the overreach of the medical establishment and the state. They do not, however, assert those rights as an end in itself. In their view, apparently, as in mine (and yours?), the end in itself is life itself.


  11. The Gard case is yet more evidence of the rise of a culture that fails to properly value human life. Pope Francis and President Trump agree: Sentencing a baby to death is simply wrong. These two men form the twin pillars of a peculiar alliance against Europe’s expanding culture of death, and the irony is frightening. After all, what does it say about the state of European society when it cedes a man who is perhaps the most vulgar president in American history the moral high ground?

    It’s all emblematic of a broader moral decay in Europe, one in which the value of life is increasingly subject to utilitarian calculations, while ideas of ingrained human dignity and intrinsic worth are falling by the wayside. Euthanasia is a centerpiece of this encroaching culture of death, and the slope is slippery. Wesley J. Smith has highlighted how safeguards have failed to prevent the practice’s abuse: Since first permitted in the 1970s, the Netherlands has always had a problem with doctors killing patients who have not asked for euthanasia. Despite that being murder under the law, nothing substantial is ever done about it. In 2015, Smith found that over 400 patients in the Netherlands were killed without explicitly requesting euthanasia.

    It gets worse.

    In 2016, Dutch physicians “killed about one mentally ill patient each week.” Charles Lane has identified additional egregious practices in both Belgium and the Netherlands. In the latter, for example, “right-to-die activists opened a clinic in March 2012 to ‘help’ people turned down for lethal injections by their regular physicians.” This clinic killed almost a dozen people whose sole reason for requesting euthanasia was being “tired of living.” In 2016, Dutch physicians ‘killed about one mentally ill patient each week.’

    Pope Francis once characterized global malaise as the product of a “throwaway culture.” This is a particularly apt description of the increasingly dominant attitude toward life in Europe: Its value is reduced to a function of economics and pleasure. If it isn’t useful, productive, or joyful, then it isn’t worth living.

    More pernicious, however, is the precedent Gard’s case sets for allowing judicial despots and bureaucrats to dictate whether a life is worthy of being saved. The Gard case further undermines the notion that euthanasia is about freedom and choice; on the contrary, it is blatantly totalitarian. The European Court of Human Rights has assumed quasi-divine status by claiming it has the right to determine who can live and who can die. This is apparently what “progress” looks like: barbarism disguised as mercy. It is the logical consequence of a culture experiencing moral decay, for when society does not protect the lives of those who cannot speak for themselves, the throwaway culture thrives.


  12. Donald Trump is reportedly planning to confront Theresa May over the case of terminally ill child Charlie Gard.

    The White House is expected to raise the issue of the 11-month-old boy's treatment in a one-to-one meeting with the Prime Minister at the G20 summit.

    The US President said this week he would be "delighted" to help Charlie, who is being cared for in London, after a UK court ruled his life-support machine should be turned off.

    The Vatican also offered to treat the young boy amid growing international attention on a lengthy legal battle between his parents, who want to take him to the US for experimental therapy, and doctors at Great Ormond Street Hospital (GOSH.)

    Downing Street is preparing for the subject to come up in a meeting with the President at the gathering of world leaders in Hamburg, the Daily Mail reported.

    Their talks are likely to be dominated by the North Korea missile crisis and a post-Brexit trade deal, but Number 10 was said to be compiling a detailed briefing on Charlie's case in anticipation of questions from Mr Trump.

    "The President is deeply moved by the heartbreaking situation facing Charlie Gard and his parents," a White House source told the newspaper.

    "Although the President himself has not spoken to the family, members of the administration, assisted by British officials, have done so.

    "President Trump has no desire to pressure the family in any way. However, he does want them to know that he is willing to provide assistance should they need any."

    The President tweeted on Monday: "If we can help little Charlie Gard, as per our friends in the UK and the Pope, we would be delighted to do so."

    But Foreign Secretary Boris Johnson said yesterday decisions on the boy's treatment should be "led by expert medical opinion, supported by the courts"…

    Charlie's mother said: "The support from the Pope and the President has given us hope. They are traditional men who believe in the family.

    "They believe in our case and understand why we believe it is right to continue fighting so hard to save Charlie."

    But the British government has backed medics at the centre of the case and stressed any any decisions about the infant's care should be in his "best interests".

    Mrs May told MPs on Wednesday: "It is an unimaginable position for anybody to be in and I fully understand and appreciate that any parent in these circumstances will want to do everything possible and explore every option for their seriously ill child.

    "But I also know that no doctor ever wants to be placed in the terrible position where they have to make such heartbreaking decisions.

    "I am confident that Great Ormond Street Hospital have and always will consider any offers or new information that has come forward with consideration of the wellbeing of a desperately ill child."


  13. People everywhere will understand why Charlie’s poor distraught parents, Connie Yates and Chris Gard, are not yet ready to do so; why they have clung to the belief that an unproven treatment available in America might somehow work miracles, even when his doctors concluded otherwise.

    And if all else were equal, the compassionate thing surely would have been to let them try it, if only for the comfort of knowing they did everything they could. If all else were equal, it might not matter that the doctor offering this experimental treatment admitted to the judge that it had a vanishingly small chance of working, or that it hasn’t even been tested on mice with Charlie’s specific form of mitochondrial disorder, let alone children with it. If all else were equal, we could simply accept that this is something his parents needed to do.

    But all else is not equal. Charlie’s doctors at Great Ormond Street hospital testified that he was likely to be in pain; that further treatment would not simply be futile, but could cause further suffering; and that they felt it was ethically and professionally wrong to prolong his life artificially. You can only weep for all concerned in what the supreme court called “this desperately painful case, in which the intensity of the parents’ feelings are so entirely understandable”. But it is Charlie who is the patient, the one to whom doctors must do no harm, and in British law, the child’s interest always comes before the parent’s. In this narrow legal sense, children are with you but they do not belong to you: they belong ultimately only to themselves…

    For trust is at the heart of this. The decision to stop active treatment and allow a child to slip away can never be anything but agonising. But given a relationship of trust between doctors and parents, it can usually be made by mutual consent. This case came to court only because his parents did not accept the professional opinion of Charlie’s doctors, supported as the courts found it was by an expert team from Barcelona, four British doctors asked for a second opinion and a fifth instructed by the parents. And unfortunately, professional judgments are by their nature almost impossible to prove conclusively right or wrong, except retrospectively. In the end even the supreme court’s deliberations come down to a leap of faith: do you trust the medical experts, or not? (continued)

  14. (continued)Without trust, medicine is useless. Every time you buy so much as a pack of paracetamol, you place your trust in the factory process that made it. Every routine vaccination means trusting that the nurse measured the dose correctly. Every time you rush a wailing baby to the doctor and are told it’s just teething, you have to trust that they haven’t missed something serious. And you have to do so knowing that no matter how good their training, nurses and doctors can occasionally be mistaken, or negligent, or even in very rare circumstances, malevolent. Like anyone else in public life, doctors have a moral responsibility to earn that trust, by identifying and eliminating their own failings.
    But without a basic willingness to trust, we’re all back in the dark ages; unable to allow anyone else to do anything for us, bound by the limits of our own lack of knowledge. Without a belief that experts are, if not infallible, generally more reliable than people with no idea what they’re talking about, medicine can’t function. But nor can science, the rule of law, or government itself. And social trust, as the behavioural economist and former Downing Street adviser David Halpern used to argue, is the glue holding the public realm together; people who don’t trust others behave badly, because they expect nothing better in return.

    Sadly, it’s hard to see a happy ending to Charlie Gard’s story. His parents deserve nothing but our sympathy, having only tried to do what anyone might do in heartbreaking circumstances.

    But the same is surely true of those Great Ormond Street staff whose life’s work is saving the children other hospitals can’t, and of the courts forced to exercise such a latter-day judgment of Solomon. Every child’s life is sacred. But so, in its desiccated and less emotionally appealing way, is the legal and ethical framework that exists to protect them. We devalue it at our peril.