Wednesday, July 12, 2017

Charlie Gard 4

Savulescu J. Is it in Charlie Gard's best interest to die? Lancet. 2017 May 13;389(10082):1868-1869.

On April 11, 2017, the High Court in London, UK, ruled that it is in Charlie Gard's best interests to stop treatment and die. High Court Judge Mr Justice Francis explained: “although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child's best interests”.   9-month-old Charlie Gard has mitochondrial DNA depletion syndrome and the court ruling, which is being challenged by his parents, allows withdrawal of life-support treatment. Charlie Gard's parents have raised funds for experimental treatment in the USA with nucleoside replacement therapy. In his ruling,  the judge referred to a previous judgment:  “There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term ‘best interests’ encompasses medical, emotional, and all other welfare issues.” In other judgments, life has been deemed not in the child's interests when it would be “intolerable to the child” and “bound to be full of pain and suffering”. 

It is not clear, however, what these criteria mean and whether Charlie Gard's life meets them. Charlie Gard's life currently lacks wellbeing, and he experiences discomfort related to treatment in intensive care (suctioning, tube feeding, ventilation, etc) and epileptic seizures.  However, these difficulties can be managed with medical treatment, such as sedation and analgesia. His capacity for experiencing pleasure and engagement in social relationships is unclear. However, many severely disabled people, even on long-term ventilation, value their lives and it is not clear that continued life is against their interests. 

Experimental nucleoside replacement therapy, which the parents wish to seek in the USA, offers a very small but non-zero chance of some improvement. The claim that Charlie Gard's life is objectively against his best interests turns, crucially, on the claim that a very small chance of a small improvement is outweighed by the suffering attending his condition and its treatment.  But this not an “objective fact” but a value judgment. There is space for reasonable disagreement. For example, is a one in 10 000 chance of improvement worth some months of “unpleasantness”, of needles and invasive procedures? There is inevitably the escape to euphemisms like “death with dignity”.

Having spent 20 years in medical ethics, I do believe some lives are intolerable and not worth living, but this is extremely rare.  The best example is severe dystrophic epidermolysis bullosa. In this condition, the skin relentlessly peels off, causing extreme pain and infection. In the most severe form, the child often dies of infection in the first year of life, even with medical therapy.   Severe pain is an intrinsic part of the syndrome;  this situation is not the case in Charlie Gard.

How should value judgments be made? Philosopher John Rawls described a process of reflective equilibrium.  This involves developing principles (such as the best interests principle and those of distributive justice) and concepts (such as wellbeing and a life worth living), but crucially revising these in line with intuitions about specific cases, such as Charlie Gard's. This process is what judges engage in but judges, or doctors, are not necessarily or exclusively ethical experts.

Rawls described the qualities of people who should be engaged in reflective equilibrium. They should be knowledgeable about the relevant facts. Importantly, they should be “reasonable”: first, being willing to use logic; second, being disposed to find reasons for and against a solution; third, having an open mind; fourth, making a conscientious effort to overcome intellectual, emotional, and moral prejudices. Lastly, Rawls argued that they are to have “sympathetic knowledge…of those human interests which, by conflicting in particular cases, give rise to the need to make a moral decision”. 

A group of such people outside the medical and legal professions might either conclude a slim chance of life was worth taking or that they do not know.

Consider the following thought experiment in support of the claim that it is not known whether Charlie Gard's life really is “intolerable”. Imagine that there is a baby with mitochondrial DNA depletion syndrome like Charlie Gard in the USA. However, he was already being treated with nucleoside replacement. He has been deeply sedated. He spends nearly all of his day unconscious on a breathing tube. Once every few days, his sedation is lightened to see if there is any improvement in his condition. Doctors have agreed with parents that if after 6 months of this treatment there is no improvement, they will stop artificial ventilation and allow this baby to die. Are these doctors acting in a cruel and inhumane manner? Should courts intervene to protect the baby's best interests? Is this baby being forced to live a life that is intolerable? Should the experimental treatment and artificial ventilation be stopped and this baby be allowed to “die with dignity” now?

In my view, the answer to all these questions is no. Presumably, many babies have been treated in similar circumstances. Yet we might also believe it would be reasonable for Charlie Gard's parents to have chosen to forgo experimental treatment and allow him to die. Thus, it could be reasonable to give or not give Charlie a trial of therapy. One need not argue that treatment is in the best interests of Charlie Gard. It is enough to say we don't know whether life will turn out to be in his interests and worth living. In that case, other considerations, such as the interests or desires of his family, the social value of engaging in experimentation, or distributive justice should dictate what is done.

Limitations in medical resources, such as intensive care, mean not everyone can be treated who might possibly benefit. They must be distributed according to a principle of distributive justice. Treatments with a very low chance of benefit should not be provided because they deny someone with a much better prognosis. It is less controversial to limit treatment because it will provide less benefit to this patient than to someone else (justice), than to argue it provides no benefit at all, especially when not treating will result in death (interests). “Futility” is better conceived as a decision about justice, than an interest in death. Thus, even if it were clearly in Charlie Gard's interests to receive treatment, it could still be withheld on the grounds of distributive justice.  But those grounds do not apply because Charlie Gard's parents have raised funds to cover his treatment outside the UK. His chance does not deny others a chance. We are left with no grounds for denying Charlie Gard his chance of life.

Judges must make a decision in these kinds of cases. The decision of High Court Judge Mr Justice Francis  was reasonable, as Dominic Wilkinson  argues in an accompanying Comment. But in light of the appeal by the parents of Charlie Gard, a different judge might reasonably decide the opposite.


  1. Charlie Gard's parents stormed out of a High Court hearing about their terminally ill son's fate today after a disagreement with the judge.

    Chris Gard and Connie Yates left little Charlie's favourite cuddly monkey toy behind as they left the London courtroom just two hours into the hearing.

    In emotional scenes, an angry Chris stood up and said: "I thought this was supposed to be independent", before he and his partner walked out.

    They had reportedly disagreed with Mr Justice Francis about something they said during a hearing about their 11-month-old son three months ago.

    The judge later apologised to them, telling them he had found a transcript of what they had said and they would not be misquoted, Sky News reported.

    Earlier, the couple had paid tribute to their "fighter" little boy as they arrived at the court in a fresh battle to overturn a decision to switch off his life support.

    They said: "We love him more than life itself.

    "If he's still fighting, then we're still fighting."

  2. The case is commanding enormous public attention because of the crucial disagreements between Charlie's parents and the medical experts in his case. These boil down to three areas: the degree of permanent brain damage already sustained; what Charlie's quality of life is like (particularly whether he is experiencing pain); and whether an experimental treatment – nucleoside therapy – might improve his condition, however imperfectly and temporarily. As Charlie's parents raised more than £1m through a crowdfunding campaign in order to take him to America for nucleoside therapy, GOSH went to the courts.

    In April, Mr Justice Francis, sitting in the Family Division of the High Court, agreed with the hospital that this would not be in Charlie's best interests, and ordered instead that Charlie's life support be withdrawn in favour of palliative care and a "dignified" death. Over the intervening months, Charlie's parents have appealed that decision all the way to the European Court, meeting at every stage with the same judgement.

    What is really going on here? It is not, at its heart, a dilemma about administering modestly life-prolonging treatment to a child with a poor quality of life and an abysmal prognosis. That goes on up and down this country every single day: kids with incurable cancer being given toxic treatments in the hope of buying them just a little more time with their loved ones, perhaps to manage that holiday of a lifetime to Disney; severely disabled youngsters with catastrophic chromosomal abnormalities being prescribed antibiotics to cure yet another chest infection that might otherwise be the one that will eventually see them succumb.

    The issue in the Charlie Gard case is the experimental and uncertain nature of nucleoside therapy. This has not previously been administered to a patient with Charlie's specific condition, but there are indications from laboratory research – and the use of the therapy in related disorders – that it might just do him some partial and temporary good. Indeed, GOSH itself apparently applied for ethical approval to try the unproven therapy earlier in his illness, but abandoned the idea because of the marked deterioration in his condition during the time it was being deliberated.

    I'm quite sure of this: were there to have been previous experience with nucleoside therapy that demonstrated a modest difference to patients like Charlie, then he would be receiving it even now. But because there isn't, arguments about the degree of reversibility of brain damage that he's already sustained, and disputes about his quality of life (his parents insist he experiences far more interaction and enjoyment than GOSH recognises, and they are certain that he is not living in pain) are being marshalled to support the don't-go-there decision.

  3. An American doctor has testified in the case of a British couple seeking to have their terminally ill infant treated in the United States, saying it is worth trying a treatment that had only recently emerged.

    The doctor, whose name and institution cannot be named because of a court order, says that new clinical data has emerged that was not available earlier when judges rejected the wish of Charlie Gard’s parents to take him to America for treatment.

    The doctor told the court Thursday that he thought the therapy “worth trying,” and estimated there was at least a 10 percent chance of meaningful success.

    Specialists at Great Ormond Street Hospital have fought the parent’s wish for the treatment because they don’t think it will help and may cause him pain...

    Britain’s Great Ormond Street Hospital has offered an unapologetic defense of its decision to challenge a couple who want to take their terminally ill baby to the United States for experimental treatment.

    In a submission to the High Court on Thursday, the hospital’s attorney, Katie Gollop, wrote that while the institution understands that Chris Gard and Connie Yates believe they alone have the right to decide the treatment for their son Charlie, the hospital holds different principles.

    The hospital says that “a world where only parents speak and decide for children and where children have no separate identity or rights and no court to hear and protect them is far from the world in which GOSH treats its child patients.”

    The hospital’s specialists have argued that life support for Charlie should be withdrawn.

  4. Ms. Yates had told the judge she regularly measures her son’s head and disagreed with Great Ormond Street Hospital’s legal representation who said Charlie’s skull had not grown in three months, which would suggest a lack of brain function.

    Mr. Justice Francis ordered an independent person to record the child’s head and report the measurement on Friday.

    “It is absurd that the science of this case is being infected by the inability to measure a child’s skull,” he said.

    Court was adjourned for lunch and both Chris and Connie returned after the break.

    At 2 pm local time, the court heard via a video link from New York, U.S., evidence from a medical professional.

    The American doctor said that from the scans of Charlie’s head, he saw no signs of structural brain damage.

    Putting forward new evidence, the unnamed witness said that since April they have evaluated more data, and estimated the chance of success to be at least 10 per cent, referencing that of nine patients on ventilators, one is off and breathing independently. Additionally, there was an 11 to 56 per cent chance of clinically meaningful improvement in muscle strength.

  5. harlie Gard may not have suffered irreversible brain damage and could be treated with an experimental therapy, an eminent US professor told the High Court.

    In a dramatic intervention, the doctor, who cannot be named, said a new analysis of nine children suffering a similar illness - albeit one that was not nearly as severe - had shown an overall 56 per cent improvement in their condition.

    Chris Gard and Connie Yates want Mr Justice Francis to rule that 11-month-old Charlie, who suffers from a rare genetic condition and has brain damage, should be allowed to undergo a therapy trial in the United States.

    Specialists at Great Ormond Street Hospital in London, where Charlie is being cared for, say the therapy is experimental and will not help.

    They say life-support treatment should stop.

    The couple, who are in their 30s and come from Bedfont, west London, are mounting the latest stage of their fight at a hearing in the Family Division of the High Court.

    Charlie's parents have already lost battles in the High Court, Court of Appeal and Supreme Court in London.

    They have also failed to persuade European Court of Human Rights judges to intervene.

    The couple say there is new evidence and want Mr Justice Francis to carry out a fresh analysis of their case...

    A lawyer representing Great Ormond Street bosses told Mr Justice Francis they do not believe there is any role for a court.

    "Charlie's parents fundamentally believe that they alone have the right to decide what treatment Charlie has and does not have," said Katie Gollop QC in a written statement.

    "They do not believe that there is any role for a judge or a court.

    "They feel they have been stripped of their rights as parents."

    But Ms Gollop said Great Ormond Street is bound by "different principles".

    She said children also have rights and the hospital mission statement is: "The child first and always."

    Ms Gollop said doctors treat children as individuals and act in a child's best interests.

  6. Anyone looking for another reason not to leave life-and-death issues to the state need look no further than the conflict between the British government and the parents of 11-month-old Charlie Gard.

    Governments, including the British courts and the European court of human rights have refused to allow Charlie’s parents to take him to the U.S. for what they believe is life-saving treatment. In what many will regard as a cynical decision, UK judge Nicholas Francis gave Charlie’s parents just two days to present new evidence as to why their son should receive experimental treatment. A final decision will be handed down in a hearing on Thursday...

    Charlie’s parents, Connie Yates and Chris Gard, believe an experimental treatment known as nucleoside therapy might work on their son. British doctors say it won’t improve the child’s “quality of life.” They want him to die...

    The parents have raised enough money to take Charlie to America for treatment. Wouldn’t most parents do all they could for their child, especially one so young who is helpless and at the mercy of adults? I know I would for my grandson, who is also named Charlie.

    Judges, bureaucrats and politicians should not be allowed to make such a decision, but the growing power of the state is increasingly assuming the power to determine who is fit to live and who should die — and to quote Scrooge from Charles Dickens’ “A Christmas Carol,” “decrease the surplus population.” Who, or what, can stop them, assuming a majority want to?...

    When the state is allowed to assign value to a human life, the unwanted, the inconvenient, the sick, the elderly and the handicapped are all at risk. Seeing lives as less than valuable, or of no value, will bring us to the point where only the fit and healthy are allowed to live...

    At a Monday hearing, Judge Francis said “new and powerful” evidence submitted by the parents and their attorney could overturn previous rulings. That would be good, but the larger question is why does a court get to decide what health care is best for a child? That should be the parents’ privilege and responsibility...

    It was University of Chicago professor of biology, Dr. Leon Kass, who issued this stern warning: “We have paid some high prices for the technological conquest of nature, but none so high as the intellectual and spiritual costs of seeing nature as mere material for our manipulation, exploitation and transformation. With the powers of biological engineering gathering, there will be splendid new opportunities for similar degradation of our view of man. ... If we come to see ourselves as meat, then meat we shall become.”

    Charlie Gard is not “meat.” He and his parents should be allowed to come to America. As long as hope lives, so does Charlie.

  7. The case of 11-month old Charlie Gard is bringing out the worst in the “Death with Dignity Movement.” By appointing Victoria Butler-Cole, a death with dignity advocate, as the lawyer representing Charlie in court against his parents, the death with dignity movement has crossed the line from advocating for individuals’ wishes to projecting its views onto innocent children who are too young to have indicated that “death with dignity” is something they want...

    Charlie’s de-facto lawyer, Victoria Butler-Cole, once represented Lindsey Briggs in the High Court, who argued that her husband would have preferred to be taken off life support. Paul Briggs had not written a do-not-resuscitate (DNR) order. The court ruled to give Briggs palliative care only, and it was the first time that a court ruled to withdraw food and water from a clinically stable patient...

    Briggs’ case couldn’t be more different from the Charlie Gard case. In Briggs’ case, the individual's closest relative testified that death with dignity was the individual’s will. In the case of Charlie Gard, in the case of a child, the individual’s closest relatives testify that the individual wants to live and that medical treatment is in his best interest.

    It is hard to argue with a consenting adult who says they are in so much pain that they want to end their lives comfortably. Those advocating for “death with dignity” feel they act in individuals’ best interest by advocating for access to palliative care, do-not-resuscitate (DNR) orders, or euthanasia.

    But in the case of Charlie Gard, the legal system has put Charlie Gard’s fate into the hands of the Death with Dignity movement. Individuals who believe that a comfortable death is more desirable to a life on a ventilator and medical treatment have been appointed to represent Charlie Gard. Furthermore, the court has put the burden of proof on Gard’s parents to prove that the treatment they want for their son is not harmful, that Charlie is not in pain, and that Charlie is growing like a typical child...

    When did we decide as a global society that it is always better to die comfortably than to undergo medical treatment? We didn’t. As support for Charlie’s case grows around the world, as parents of children with similar conditions (and at least parents of one child with the exact condition as Charlie) advocate for Charlie’s access to treatment, it is evident that most people support hospitals taking every measure to save a life: that death with dignity should be the last resort.

    And when did we decide as a global society that an infant would rather die comfortably than fight for his life? We didn’t. Charlie Gard is obviously fighting to stay alive, which indicates to me that he has the will to live.

    Unless someone has written a do-not-resuscitate order, or their closest relative testifies that they prefer death with dignity, shouldn’t we continue with our initial assumption as a society that an individual prefers to live? Hospitals should do their job and provide every treatment possible to a sick patient or transfer a patient to a hospital who will.

    The judge in Charlie Gard’s court proceedings Monday acknowledged that the Children Act of 1989 says the child’s welfare should be the court’s “paramount consideration.” If the death with dignity movement can convince a court that it is in a child’s best interest to be deprived of life-saving treatment and allowed to die without air, food, or water, then the future of our children’s health care as we know it is in dire danger.

  8. An American specialist who has offered to treat Charlie Gard is due to examine the terminally-ill baby next week, a judge has heard.

    Michio Hirano is scheduled to visit Great Ormond Street Hospital in London on Monday and Tuesday and discuss the case with specialists treating Charlie, Mr Justice Francis was told.

    It came after the High Court judge lifted an order which barred journalists from revealing the name of the American specialist.

    Mr Justice Francis ruled Dr Hirano, a professor of neurology at the Columbia University Medical Center in New York, could be named in media reports...

    Mr Justice Francis had made an order barring journalists from naming Dr Hirano or saying where he was based early this year, shortly after litigation began.

    Charlie's parents had said they were worried publicity might put pressure on Dr Hirano.

  9. Charlie Gard, the terminally ill British baby at the center of a medical and ethical debate, will be evaluated by a doctor from the United States next week.

    Dr. Michio Hirano, a professor of neurology at New York’s Columbia University Medical Center and chief at the Division of Neuromuscular Disorders, will travel to London where the 11-month old boy is being held after the Family Division of Britain’s High Court in London denied his parent’s request to travel to the U.S. for experimental medical treatment. The doctor’s identity was revealed for the first time on Friday...

    According to his Columbia University Medical Center bio, Hirano has been a doctor for more than 30 years — and has been named one of America’s Best Doctors, as well as an elected member of the American Neurological Association and elected fellow of the American Academy of Neurology.

    He first received his BA from Harvard College, before completing his Master’s Degree from Albert Einstein College of Medicine. Both his neurology residency training and post-doctoral fellowship in neuromuscular genetics were at New York-Presbyterian Hospital/Columbia University Medical Center .

    In addition to his work at Columbia as professor of neurology and chief at the Division of Neuromuscular Disorders, Hirano is also director of the H. Houston Merritt Clinical Research Center and medical director of two laboratories: Laboratory of Molecular Genetics and the Laboratory of Metabolic and Mitochondrial Disease...

    Hirano’s experience in the field includes a specialty in Myopathy, Neuromuscular disease, Muscular Dystrophy, Myoneural disorder, Neurometabolic disorder, Myasthenia Gravis, and Neuromuscular junction disorder.

    Additionally, he lists a series of research interesst on his site, including “positional cloning techniques applied to autosomal disorders affecting the mitochondrial genome” and “investigations of mutations of mitochondrial DNA in human cardiomyopathies.”...

    Hirano told Judge Francis on Thursday that Charlie’s MRI scan did not indicate structural damage to the brain, CNN reported, and that there was an “11% to 56% chance of clinically meaningful improvement” in muscular function with the proposed treatment.

    He added that keeping Charlie on a ventilator would not cause him harm, CNN reported, and that Charlie did not seem to be in any significant pain...

    Hirano will spend the first two days of the working week assessing Charlie and meeting with specialist and his current immediate-care team, ABC News reported. That includes a doctor from the Vatican children’s hospital.

    Judge Francis granted Charlie’s parents to be present for the discussions on Friday, CNN reported — an allowance not normally permitted, but one that Gard and Yates fought hard for in court. The meetings will be chaired by an individual who will remain anonymous, ABC News reported.

    Hirano will spend the first two days of the working week assessing Charlie and meeting with specialist and his current immediate-care team, ABC News reported. That includes a doctor from the Vatican children’s hospital.

    Judge Francis granted Charlie’s parents to be present for the discussions on Friday, CNN reported — an allowance not normally permitted, but one that Gard and Yates fought hard for in court. The meetings will be chaired by an individual who will remain anonymous, ABC News reported.

  10. Death, the ultimate indignity, is redeemed a little whenever a person is able to decide how to meet the inevitable — or so many of us seem to feel.

    Whether to let go at some point, declining the wholesale medicalization of one’s final days — or to fight to the last, pursuing every possible reprieve: The choice, when fate allows it, can be one last expression of autonomy and individuality…

    Little Charlie’s plight raises not just an end-of-life dilemma but the issue of incapacity in a particularly cruel form. Nothing can be known about an infant’s wishes — no one remembers his once saying he would never want to be put on a machine. Adults must decide, and Charlie’s parents adamantly desire to bring him to America for long-shot experimental treatment; his doctors, insisting that only additional suffering can result and that it is time to let Charlie die with dignity, have gone to court and so far blocked the parents’ plans.

    Charlie’s parents may well be misguided about what’s best for him. There’s no reason to doubt that all concerned have the child’s well-being at heart. But to American ears, it just sounds strange that physicians and judges can forbid parents from trying to save their own child’s life — especially when Charlie’s parents have raised some $1.7 million in private donations to pay for treatment.

    This isn’t exactly a matter of Britain’s vaunted “single-payer” health care system showing a despotic, death-panel side (though foes of “socialized medicine” have been eager to portray it that way). But it may be a glimpse into the fundamentally more socialistic — or communitarian, if you prefer — legal and cultural atmosphere of European nations…

    U.S. parental rights, too, are far from absolute. But here it’s possible to worry that officials are often too slow to intervene on behalf of abused or neglected children (think of Minnesota’s child-protection tragedies).

    In Charlie’s case, it simply would be easier to side with the London medical experts if his parents were fighting to deny their child treatment — if the law’s presumption were in favor, not of the parents, but of life. As it is, Charlie’s moral and legal predicament seems as rare and perplexing as his medical condition.

    Less unusual are terminally ill adults who can express clearly what they want but can’t have. One type, rather like Charlie’s parents, seek to fight on for life, beyond the range of therapies approved by experts at the U.S. Food and Drug Administration. “Right to Try” legislation has proved contagious coast to coast and gives the truly dying, who have exhausted all conventional remedies, permission to circumvent regulations and give a go to whatever is out there.

    Elements of the health care establishment, particularly ethicists, object to this popular uprising against medical authority — for a range of reasons that seem to boil down to its eroding medical authority, which always threatens further erosion. It’s a legitimate concern but a weak argument against the freedom to take one last chance at survival.

  11. Advocates for letting Charlie Gard’s parents decide when and if to remove life support–and to allow Charlie to receive a last ditch effort experimental treatment–are crying foul at the named-barrister appointed by the court to represent the guardian, and hence, his interests in the case.

    The attorney’s name is Victoria Butler Cole. So who is Ms. Cole? She is the Chairman of the Board of Trustees for Compassion in Dying.

    CiD’ does not directly promote assisted suicide. But CiD’s-proclaimed ”sister organization,” Dignity in Dying, most certainly does.

    This is highly problematic. A court-appointed attorney for Charlie should be someone who understands end of life issues, but also, an advocate who is clearly identified as independent and unbiased.

    Ms. Cole’s close association as the chairman of the board of a group closely affiliated with a hard-line assisted suicide advocacy organization does not pass that test.

    At the very least, her appointment would seem to create the appearance of a conflict of ideological interest and renders her continuing advocacy for the immediate cessation of all life support–to put it tactfully–unsurprising.

  12. Would experimental medical treatment be in Charlie’s Gard’s best interests? Or should he be taken off of life support and allowed to die? And who should decide his fate?

    From a medical ethics perspective, both courses of action are permissible in principle. If Charlie were an adult and had made his wishes known in a living will (or through a health care proxy), those wishes would be followed without controversy. An adult patient would never be barred from seeking further treatment (no matter how small or uncertain the prospective benefit) from a doctor willing to provide it, especially if he had the money to pay for it himself.

    This case, then, is not really about Charlie’s best interests. After all, reasonable people can disagree about what is best for Charlie — unless we are willing to say that not only Charlie’s parents, but also the more than 84,000 people who donated money to fund Charlie’s experimental treatment, the millions of others who support their cause, and the prestigious hospitals willing to provide the treatment, are all acting completely unreasonably.

    Rather, the real question at issue in this case is: Who has the right to decide on Charlie’s behalf, given that Charlie himself has never had a chance to express his wishes?

    Should it be the Ormond Street Hospital doctors, who claim that nothing else can be done to treat Charlie’s rare mitochondrial disease, and that his condition has deteriorated to the extent that “this situation is not a tolerable one to leave a child in”? Should it be Michio Hirano of Columbia University, the doctor who planned to examine Charlie on Monday after testifying last week that the experimental therapy has an 11% to 56% chance of improving Charlie’s condition, possibly enabling him “to interact,” “to smile,” and “to look at objects”?

    Should it be Charlie’s parents, who believe that, though uncertain and seemingly small, such improvements would make further treatment worthwhile, perhaps allowing Charlie to experience and enjoy their loving embrace and providing them with memories that they will cherish for the rest of their lives? Or should it be Justice Nicholas Francis of the British High Court, who (at least so far) has agreed with the Ormond Street doctors that further treatment will not benefit Charlie, but rather will only prolong his suffering?

    The answer is fairly obvious: Charlie’s parents.(continued)

  13. (continued) By virtue of the deep bonds between parents and their children, Charlie’s parents are the ones most directly responsible for him, most invested in his well-being and most profoundly affected by his fate. The primary authority of parents to make decisions on their children’s behalf is widely recognized as a matter of principle and explicitly articulated in law. The United State Supreme Court has recognized the rights of parents in cases like Meyer v. Nebraska, Pierce v. Society of Sisters, and Wisconsin v. Yoder. Likewise, the European Convention of Human Rights (Article 8) and the Universal Declaration of Human Rights (Article 12) recognize the right to be free from arbitrary interference in private and family life. By contrast, one of the hallmarks of totalitarian regimes is the elimination of genuine parental decision-making authority and family privacy.

    Of course, as Article 8 of the European Convention also notes, parental rights are limited by the requirements of the public good and the rights of others. Allowing Charlie to receive further medical treatment, however, is neither a threat to the public good nor an infringement of anyone’s rights. The state could rightfully intervene on Charlie’s behalf if his parents were abusive or neglectful, but there is not even a question of abuse or neglect in this case.

    While Justice Francis sees himself as protecting Charlie’s right to avoid further suffering, his judgment presumes that the burdens of the experimental treatment will greatly outweigh the benefits, a presumption with which many reasonable and well-informed people disagree. His judgment also presumes that Charlie is suffering and in pain, even though Charlie’s mother has insisted vehemently that he is not — a claim Hirano corroborated last week.

    In prohibiting this treatment on the basis of its controversial judgment about Charlie’s best interests, the state is clearly overstepping its bounds, trespassing into the realm of parental authority and family life.

    The decisions of the British courts have been met with scathing criticism, largely out of sympathy for the plight of Charlie and his parents. Hopefully, Hirano's testimony and personal examination of Charlie will persuade Justice Francis to change his mind.

    Yet concern for Charlie and his parents is not the only reason for criticism. Everyone should be deeply worried about the precedent that this case sets with regard to the usurpation of parental authority and loss of family privacy.

    This fight is not only about Charlie’s fate but also about protecting the rights of all parents to order their family life and fulfill their child-rearing responsibilities, free from the constant supervision and intrusion of an overweening state.

  14. he US doctor who has offered to treat terminally ill Charlie Gard has attended a meeting at Great Ormond Street Hospital to decide whether he should travel to America for therapy.

    Dr Michio Hirano will discuss Charlie's condition with doctors treating him and independent specialists.

    Great Ormond Street has given Dr Hirano an honorary contract giving him the same status as its own physicians.

    It means he can examine Charlie and has full access to his medical records.

    Dr Hirano, a professor of neurology at the Columbia University Medical Centre in New York, has offered an experimental therapy called nucleoside.

    Last week, Great Ormond Street Hospital (GOSH) released a copy of its latest submission to the High Court.

    In a statement published on its website, the hospital said: "At the heart of Charlie's parlous and terrible condition is the question, how can it be in his best interests for his life-sustaining treatment to be withdrawn?

    "Charlie has been treated on GOSH's neonatal intensive care unit for many months now and very sadly, the question that arises for him arises for other patients and families at the hospital too."

    The hospital added it had treated more than 1,000 patients with mitochondrial disease and offered pioneering treatment, including nucleoside treatment, where appropriate.

    "Despite all the advances in medical science made by GOSH and the other hospitals around the world, there remain some conditions that we cannot cure and we cannot ameliorate."

    The hospital said it remained the unanimous view of its doctors that withdrawal of ventilation and palliative care were all the hospital could offer Charlie.

    It said his treatment team and all those from who the hospital obtained second opinions were of the view Charlie had "no quality of life and no real prospect of any quality of life".

  15. There's a scene at the end of the movie The Martian when Matt Damon's astronaut character is saved and everyone at NASA is cheering wildly. Some with tears in their eyes.

    ...except for one character: the head of NASA, who earlier had vetoed a rescue mission. He was not happy for the life saved. He was unhappy that he had been proved wrong.

    This illustrates the working of the mind of every bureaucrat everywhere. And everyone in the audience surely recognized that. The director of the movie knew that we knew.

    We should keep this in mind every time some British doctor, who has committed his prestige to the proposition that Charlie Gard cannot be helped, pronounces the baby's death sentence.

  16. A mum who was told to switch off her son’s life support machine has offered fresh hope to the parents of terminally ill Charlie Gard after proving medics wrong.

    Gabrielle Ali won her battle with hospital authorities who said 10-year-old Elijah would never recover with any quality of life and deemed him “clinically dead”.

    Her son, who was born with congenital heart defects, suffered cardiac arrest in April 2014 and was left with severe brain damage.

    Despite emergency surgery, he was judged to be clinically dead by doctors at Great Ormond Street (GOSH) and only being kept alive by a ventilator.

    But she failed to give up on Elijah, who now at the age of 13, has made miraculous progress and is able to breathe on his own, move his arms and head and communicate...

    Gabrielle, from Hertfordshire, says she knows “first-hand” what the Gards are going through and slammed senior medics, who she says are “determined to play God”.

    She told the Mail On Sunday: “Elijah has a chance after being clinically dead and brought back to life and he’s doing so well, then Charlie has a chance too.

    “Elijah defied all their predictions. He is proof that doctors can get it wrong. Proof that miracles can happen.”

    She said she refused to give up on Elijah because she could still see signs of life.

    Doctors told her he was blind but he was able to communicate with his eyes – blinking for “yes” and widening them for “no”, she said.

    Gabrielle was also able to fight due to her inside knowledge as a scientist in hospital laboratories, which she says gave her the strength to make her own case.

    She said the hospital threatened legal action to enforce their decision but due to her sheer determination and persistence she managed to stall them.

    When it came to switching off his ventilator on May 15, 2014, medics discovered he could breathe for himself and, little by little, he began to recover.

    Two years later she was able to bring her boy home and she is seeing continued progress.

    Elijah uses computer technology to communicate, by looking at a screen and controlling the images with his eyes, and also has an A3-sized book with words and pictures.

    With support he can sit upright, and if held kick a ball – with hopes hydrotherapy may see him walk again.

    However critics continue to ask Gabrielle what quality of life Elijah has.

    He is still largely immobile and needs a team of seven carers to help with his day-to-day needs.

    Gabrielle said: "I think he has a good quality of life given the condition he is in.

    "I make the point that a morbidly obese person also can’t move, wash themselves or do anything much at all. Are we suggesting they too should die?

    "Yes, it is a difficult situation but I’m more than happy to take on these difficulties as Elijah grows.

    "In this day and age, technology makes many things possible and I have more and more optimism.

    "We have taken him to the seaside in Brighton, to Sea Life, the theatre. It’s difficult. But it’s achievable.

    We’re planning to take him to Disneyland next year. It was always one of his dreams.

    "I know he wants to live, even though his condition would not be his choice."

  17. Charlie’s parents have the legal capacity to consent to the treatment or to the withdrawal of treatment on behalf of their child and some would argue that the parents’ view should prevail. But as Lord Justice McFarlane stated in the Court of Appeal:

    It is well-recognised that parents in the appalling position that these and other parents can find themselves may lose their objectivity and be willing to ‘try anything’, even if, when viewed objectively, their preferred option is not in a child’s best interests.

    Equally parents and patients should not be left without the ability to review the expert decisions of medical professionals. In this sense all power requires checks and balances even that wielded by those with nothing but the best of motives. The question then becomes who is best placed to resolve these competing but equally well-intentioned viewpoints?

    As justice secretary, David Lidington, recently said, the government has “no role to play” in the resolution of this case. Rather the UK’s constitutional arrangements, government policy and the law all require that the courts are used to resolve such disputes. No one is above the law and the rule of law itself means that medical decisions are reviewable in the courts.

    Importantly, when doing so, the courts are not asked to find in favour of either the parents or the medical team. Nor are they asked to consider what they would do as a parent or doctor. While they will consider evidence from both parties, the sole issue for the court is to identify what is in the best interests of the patient.

    This process ensures that medical opinion is rigorously tested and, where appropriate, it provides legitimacy to the difficult decisions that doctors are called on to make about life and death.

    For a liberal democracy it is crucial that all evidence is heard in a public forum that is independent and impartial, subject to an appeals process, and which regards the best interests of the patient as the paramount consideration.

    So far the courts have concluded that it would not be in Charlie’s best interests to undergo the experimental treatment and that it would be in Charlie’s best interests, and therefore lawful, for his life support to be withdrawn. Before the court could change this view, additional evidence would need to be produced that undermined its earlier conclusion that the proposed treatment would be futile. The purpose of the July 13 hearing is to explore whether such evidence exists.

    While the case has been emotionally fraught, evidentially it has been relatively straightforward as all the UK medical experts, including an independent consultant paediatric neurologist instructed by the parents, have agreed that the experimental treatment would have no benefit. Even the US doctor offering to treat Charlie agreed that the treatment had not been tested on Charlie’s exact condition. Mr Justice Francis summarised his evidence as follows:

    While there was reason to be hopeful that the treatment might make a modest difference to life expectancy, it almost certainly could not undo the structural brain damage that had taken place.

    If fresh evidence is now produced that supports the treatment and that evidence is disputed by the hospital doctors, the judge will have a much harder judgment to make. However, in a society that recognises the fundamental importance of the individual citizen and their human rights, it is a task that properly falls to the courts and no other.