I wrote here two days ago that in the tragic case of Charlie Gard, the 11-month old British baby suffering from a rare form of mitochondrial disease, reason and objectivity were being howled down by emotion.
Since then, it’s got a lot worse.
Charlie’s parents want to take him to America for experimental treatment. Great Ormond Street children’s hospital, which has been caring for him, oppose this on the grounds that the damage to his brain and other vital functions is irreversible, the treatment being proposed is futile and might cause him further suffering, and the ventilator keeping him alive should therefore be switched off.
Although other medical experts agree with the hospital and its position has been upheld by superior English courts and the European Court of Human Rights, the case is now back with the original High Court judge, Mr Justice Francis, with the parents claiming that fresh evidence means he should think again.
Outside the law courts where the case is being heard, demonstrators have been screaming “Stop the murder” of Charlie Gard and “Shame on you GOSH!” The court was told that medical staff treating Charlie have been subjected to “vile abuse” and death threats.
Professor Michio Hirano, a neurologist at Columbia university medical centre, was today named as the doctor who gave evidence anonymously earlier this week by video link in which he re-evaluated evidence he had previously given in the case about the experimental treatment Charlie’s parents want their baby to receive.
Professor Hirano told the court that, since his previous evidence, more data about this treatment has been evaluated. As a result, he estimated the chance of success to be at least 10 per cent, since of nine patients on ventilators one is now off and breathing independently. Additionally, there was an 11 to 56 per cent chance of clinically meaningful improvement in muscle strength.
However, this treatment has been tried on no patient with Charlie’s precise condition, a particularly rare form of mitochondrial disease. Nor has it addressed the issue of brain damage. So these statistical estimates of the chances of improvement cannot be applied to Charlie’s case.
In his earlier evidence, Professor Hirano said he hadn’t realised the seriousness of Charlie’s brain damage which was irreversible. This week, however, he said he had previously overstated the position and that the only way to tell how much damage was irreversible was to try the therapy. He admitted he didn’t know the reasons for Charlie’s encephalopathy and whether it was structural or not.
Now he is coming to London next week to examine Charlie and discuss the case with his GOSH doctors. Surely he should have done this to inform himself appropriately before he said anything at all about Charlie’s specific case?
Meanwhile, horrible and ignorant abuse has been hurled at Great Ormond Street, the court and the National Health Service. This has come principally from the political right in America which has jumped to the grotesque and false conclusion that the refusal to allow the baby to travel to receive this experimental treatment is the product of “socialised medicine” and the desire to kill patients to save money.
The Speaker of the House, Paul Ryan said: “I stand with #charlieguard and his parents. Health care should be between patients & doctors — govt has no place in the life or death business.”
Speaker Ryan thus showed himself wholly ignorant of the fact that this fight is actually between the patient’s parents and the doctors, and that the government has played no role in it whatsoever.
On the Blaze, Matt Walsh raved about “socialised medicine” sentencing a baby to death.
On Fox News, Cal Thomas stated: “British doctors say it won’t improve the child’s ‘quality of life.’ They want him to die. Apparently that’s OK with the state-run National Health Service (NHS), which is always looking for ways to cut costs.”
Also on Fox News Alistair Seton-Watson, described as a friend of Charlie’s parents, claimed of the baby that “effectively he’s being held captive by the British state and the British national health system”.
The ignorance is astounding. Whether Great Ormond Street are right or wrong in their clinical assessment of Charlie’s situation or the prospects of any improvement, they are clearly acting here out of one concern alone: to do what is in the baby’s best interests.
Those subjecting the hospital to these calumnies would do well to read the statement it issued yesterday, which I reproduce here in full.
- GOSH’s position statement
- 1. Charlie is a beautiful, tiny baby afflicted by one of the cruellest of diseases. His depletive genetic disorder leaves him with no muscle function at all now and deprived of his senses, unable to breath and, so far as can be discerned after many months of encephalopathy, without any awareness. At the moment, he is on a low dose of oral morphine. Before that was started quite recently, all of those caring for him at GOSH hoped very much that Charlie did not experience pain. They did so in the knowledge that if he did not, it was because he had no experience at all because he was beyond experience.
- 2. In one respect, Charlie is immensely fortunate and that is in having parents of great fortitude and devotion. All at GOSH wish to pay tribute to their dedication to their only child and their tireless pursuit of a cure for him. The hospital feels certain that they have done all that they have for Charlie out of love and because they could not have done anything less even if they had wanted to.
- 3. Great Ormond Street is a children’s hospital. It looks after some of the sickest children in the world and seeks to improve the quality of life of each. Many of the patients seen make enormous strides and for some there is a cure. But for some, there is a cloud without a silver lining. As an institution and as individuals, GOSH and its staff strive to forge relationships of trust and understanding with all families the better to support its child patients in difficult times.
- 4. It is only very rarely that there develops between GOSH and a child’s parents a dispute which requires judicial resolution and to the hospital’s immense regret, that has happened in Charlie’s case. All at the hospital have given anxious thought as to why Charlie’s situation, which though desperate is not, sadly, exceptional has developed in such a contentious way.
- 5. Looking back over the months since the end of March, the hospital perceives that there has been one important agreement and two important disagreements. Those caring for Charlie and his parents have agreed about Charlie’s current lack of quality of life. When he gave evidence to the High Court in April Mr. Gard said this: “He’s not got a quality of life. I’m not going to stand here and say he’s fine. He’s not got a quality of life but that’s not what we’re fighting for. We’re fighting for a chance to give him the treatment that he needs to possibly improve.”
- 6. As to the disagreements, one is a difference of opinion about the risks, benefits and ethics of providing four compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease. The other has been a more fundamental and unbridgeable divide of principle.
- 7. Charlie’s parents fundamentally believe that they alone have the right to decide what treatment Charlie has and does not have. They do not believe that Great Ormond Street should have had the right to apply to the Court for an independent, objective decision to be made. They do not believe that there is any role for a Judge or a court. They believe that only they can and should speak for Charlie and they have said many times that they feel they have been stripped of their rights as parents.
- 8. GOSH holds and is bound by different principles. 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.
- 9. Throughout this court process, Charlie has been represented by his Cafcass Guardian who has visited him in hospital, spoken to Charlie’s parents, nurses and doctors and written reports that ensure that as much as is possible for a desperately unwell baby, Charlies own viewpoint is articulated and given weight. When asked what happens to the role of the Guardian if their belief that only they have the right to decide on Charlie’s treatment is correct, Charlie’s parents answer that he does not need a Guardian because they will speak for him.
- 10. GOSH believes in its core that every patient is his or her own, unique and special person and that it owes a duty of care to each. The hospital’s mission statement is “The child first and always” and the hospital does not treat any child differently or as less of an individual because of the severity of illness or disability or because of infancy. If anything, special care is given to discover and work out with parents what is best for very vulnerable patients who cannot speak for themselves.
- 11. This is not just Great Ormond Street’s core belief, it is its duty. The GMC’s Guidance “0-18 years: guidance for all doctors” emphasises two matters in particular. The first is treating children as individuals and acting in the child’s best interests. The second is, if it is necessary to do so, putting the child first. Paragraph 4 of the Guidance says: “When treating children and young people, doctors must also consider parents and others close to them but their patient must be the doctor’s first concern.”
- 12. The decisions of the High Court, the Court of Appeal and the Supreme Court have all reaffirmed the fact that for the hospital and those who work there, Charlie’s welfare is paramount. And importantly, GOSH notes this part of the Supreme Court’s decision made on 8 June 2017: “Finally, the European Court of Human Rights has firmly stated that in any judicial decision where the rights under Article 8 of the parents and the child are at stake, the child’s rights must be the paramount consideration. If there is any conflict between them the child’s interests must prevail.”
- 13. 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. GOSH has treated over a thousand patients with mitochondrial disease and offers 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.
- 14. It has been and remains the unanimous view of all of those caring for Charlie at Great Ormond Street that withdrawal of ventilation and palliative care are all that the hospital can offer him consistent with his welfare. That is because in the view of his treating team and all those from whom GOSH obtained second opinions, he has no quality of life and no real prospect of any quality of life.
- 15. The team did not come to that view alone. Where there are very difficult and serious decisions to be made, the hospital seeks out and welcomes opinions from others. This is a vital part of the duty of care where there may be room for doubt. Before asking the Court to make a decision, GOSH sought independent opinions from three different specialists each of whom came to the ward and assessed Charlie.
- 16. The individuals cannot be named but reports were obtained from a paediatric neurologist at a London hospital and a report from a paediatric intensive care specialist at a different London hospital. In addition, a second opinion on nucleoside treatment was obtained from a mitochondrial specialist in the North of England. All three independent opinions confirmed the parlous nature of Charlie’s condition and his very poor prognosis. The view of the North of England consultant was that a three month trial of NBT treatment would not be in Charlie’s best interest
- 17. The Judge was provided with these independent reports. But in addition, Charlie’s parents also instructed their own expert. That doctor (who also cannot be named) assessed Charlie in April. He reached the same conclusions about Charlie’s condition as the specialists whom GOSH had consulted.
- 18. At a three day hearing in April, the Court listened to evidence from two of Charlie’s treating doctors at GOSH and the nurse who had spent the most time by his bedside. They were able to describe the deterioration they had seen in Charlie since his admission. The Judge also heard from the American professor contacted by Charlie’s parents who agreed to treat Charlie with as yet unlicensed drugs under what in America is called the compassionate use exception. (Treatment would be conditional on the Federal Drug Administration authorising first use ever in a human being of 4 NBT compounds. GOSH understands that to date, the professor has not made any such application).
- 19. The Court made clear findings about the efficacy of treatment. And clear findings about Charlie’s grievous condition and his lack of quality of life. The Judge made three best interests declarations about Charlie. These were: 1) That it is not in his best interests for artificial ventilation to continue. 2) That it is in his best interests to be provided with palliative care only. 3) That it is in his best interests not to undergo nucleoside therapy.
- 20. At the Court of Appeal, Charlie’s parents presented new evidence from the American professor offering to treat Charlie. The judges considered it carefully and listened to Charlie’s QC who did not seek to argue that the new evidence changed the Judge’s findings of fact of his balancing of the evidence. The Supreme Court said that the Judge had applied the correct legal test and the European Court of Human Rights found that Charlie’s rights and voice had been properly heard through his Guardian and that the findings of the UK courts were meticulous and could not be challenged.
- 21. Since Charlie’s parents believe that only they have the right to decide what medical treatment is right for Charlie and when he should stop having treatment, it is not surprising that they appealed each decision and tried to change the legal test. Any proper system of justice must have a system of appeal and GOSH supports Charlie’s parents’ right to challenge the judicial decisions. What has been very difficult, however, is the effect on Charlie of the delay.
- 22. Charlie cannot make any choices for himself and throughout this time, he has had to endure months on a ventilator which means that air is forced into his lungs because he cannot use his muscles to breathe. He has had no quality of life because of the combined effect of seeing, hearing, moving or responding to any stimulus in any purposeful way. He has grown bigger but growth has not been accompanied by health. The reverse is true and there are signs of deterioration.
- 23. GOSH is always willing to learn and well understands that genetics is a fast moving area of medicine where breakthroughs are being made all the time. When, in July, Charlie’s parents said they had new evidence that would change the Judge’s findings as to Charlie’s best interests, GOSH did not hesitate to return to Court so that the Judge could evaluate it.
- 24.GOSH understands that the American professor who wishes to treat Charlie in America will be giving evidence to the Court by video link and looks forward to hearing what he has to say about the beneficial effect of NBT treatment on Charlie’s quality of life and awareness. As it has done throughout, GOSH will act in accordance with Charlie’s best interests and its duty of care to him. It will continue to provide him with the highest possible quality of care, to respect his dignity and the confidentiality of the details of his condition and treatment and to honour Charlie’s rights as his own, unique human being.
I have written many times in the past about my concerns that the medical profession sometimes acts out of moral confusion, that it places too much emphasis on the “quality of life” rather than respect for life itself, and that it may blur the crucial distinction between killing and allowing to die. I have also often written that the NHS is a flawed concept which should be rethought. In the case of Charlie Gard, however, it is obvious that Great Ormond Street’s attitude towards its tiny patient is based on appropriate ethical concerns alone.
The first rule of medical ethics is “do no harm”. If doctors carry out a procedure that may inflict pain or distress – and even more so if, as in Charlie’s case, there is no way of knowing for sure whether he is experiencing pain or distress – there has to be good reason to believe that this will be outweighed by the likely benefit to that patient from such a procedure. In baby Charlie’s case, no such evidence has yet been produced.
Great Ormond Street hospital have thus behaved with both ethical punctiliousness and compassion. For this they are being smeared and abused as potential murderers – by those with no knowledge of the salient details of this case, no understanding of medical ethics and no grasp of the independence of the English judiciary from state control, but displaying instead an arrogance as politically biased as it is cruel.
I have often written about the viciousness of the mob on the political left. In this tragic case, the viciousness is coming from a mob on the other side.