‘It is a sad irony that while the people of the UK are busy celebrating a royal birth, its government is brushing off a commoner’s right to life. It is a grim reminder that systems of socialized medicine like the NHS vest the state with power over human lives, transforming citizens into subjects.’
Ted Cruz, Senator for Texas, 25 April 20181
On the evening of Friday, 23 April 2018, for the second time in little under a year, several hundred concerned citizens gathered to storm a children’s hospital. As placards – Give Him A Chance and I Stand With Life – bobbed up and down in a sea of angry and anguished faces, ‘Alfie’s Army’ charged at the line of police officers marshalling the doors to Alder Hey Children’s Hospital in Liverpool, intent on breaking through the state’s barriers to get to a desperately poorly twenty-three-month-old boy, Alfie Evans.2 In an echo of the summer before, when ‘Charlie’s Army’ had united outside Great Ormond Street Hospital in support of the distraught parents of another ill infant, the rallying cry was succinct and devastatingly powerful: Please don’t let the state kill our child.
Charlie Gard’s plight had first come to public attention in early 2017.3 Charlie suffered from a rare inherited disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to as MDDS. He was admitted to Great Ormond Street Hospital at the age of two months, after his worried parents, Constance Yates and Chris Gard, visited their GP due to concerns over Charlie’s development. Shortly afterwards, he began to suffer from seizures, and a series of tests subsequently confirmed the tragic diagnosis.
The symptoms were severe. Progressive respiratory failure meant that Charlie was dependent on a ventilator to keep him alive. He was unable to move his limbs, nor could he open his eyes enough to be able to see. He was persistently encephalopathic – there were no usual signs of normal brain activities such as responsiveness, interaction or crying. He was also deaf, and was affected by frequent seizures. The clinical consensus was that his quality of life was so poor and his condition so devastating that Charlie would derive no benefit from continued life. Accordingly, Great Ormond Street Hospital applied for a court order declaring that it was lawful for artificial ventilation to be withdrawn and substituted for palliative care – a court order, in effect, that Charlie should die.
There was, however, another option: a pioneering treatment, known as nucleoside therapy, was available in the United States. Charlie’s parents traced a doctor, who said that, subject to funding, he would be prepared to treat Charlie in the US. Charlie’s desperate parents appealed to the public for funds, and, with the help of social media and crowdfunding, raised £1.2 million to pay for nucleoside therapy, to take place in America.4
But when the case came before the High Court in March and April 2017, the judge hearing the case, Mr Justice Francis, refused to allow the pioneering treatment to take place, ruling instead that, in his judgement, Charlie should have his ventilation withdrawn.
There followed over the next few months a series of appeals through the hierarchy of the English and Welsh courts, with the Court of Appeal and the Supreme Court upholding the decision of the High Court. When those appeals failed, submissions were made to the European Court of Human Rights (ECtHR), whose judges similarly refused to step in to save Charlie’s life.
Matters soon went global. The ECtHR decision attracted the attention of the American media, with the Breitbart website condemning the ‘EU court’ for supporting the decision of the British ‘death panel’.5 On the evening of 2 July 2017, following protests outside Buckingham Palace, the Vatican released a statement, in which Pope Francis announced that he was following Charlie’s case ‘with affection and sadness’. Speaking of Charlie’s parents, the statement said, ‘For this [the Pope] prays that their wish to accompany and treat their child until the end isn’t neglected.’ Within hours, US President Donald Trump tweeted, ‘If we can help little #CharlieGard, as per [sic] our friends in the U.K. and the Pope, we would be delighted to do so.’6 Within a day, the Vatican’s hospital, Ospedale Pediatrico Bambino Gesù, offered to admit Charlie so as to prevent his ventilation being switched off. This offer was endorsed, and its acceptance urged, by the Italian Foreign Minister Angelino Alfano during a telephone call with UK Foreign Secretary Boris Johnson.7 This conversation was reported on the same day that thirty-seven Members of the European Parliament published an open letter to the UK Prime Minister and Secretary of State for Health, condemning the ‘outrageous outcome of Charlie’s case’, which it was said ‘infringes Europe’s most fundamental values, particularly the right to life, the right to human dignity and personal integrity’.8
Fox News told its American audience that Charlie had been ‘sentenced to death by the British government’,9 while Breitbart warned that the courts’ decisions were the inevitable corollary of ‘single-payer, government-run health care’.10 The Austin American-Statesman advised readers that ‘European bureaucrats made the callous decision that it would not be cost effective to spend money on [Charlie], even in the face of possible treatment.’11
Fox News commentators excoriated the judge’s ‘cynical decision’ to rule in favour of a ‘state-run National Health Service [which is] always looking for ways to cut costs’, reaching variously for parallels with Ebenezer Scrooge’s entreaty to ‘decrease the surplus population’ and, inevitably, the Nazis, warning that the UK was teetering on the precipice of a ‘full embrace of eugenics’.12 The Speaker of the US House of Representatives, Paul Ryan, tweeted: ‘I stand with #CharlieGard & his parents. Health care should be between patients & doctors – govt has no place in the life or death business.’13
Back at home, crowds of protestors from all over the world began to gather outside the Royal Courts of Justice on London’s Strand, their chants of ‘Medicine, not murder’, ‘Shame on you, GOSH [Great Ormond Street Hospital]’ and ‘Shame on you, judge’ an audible, sombre percussive to the proceedings inside.
Appalled by the British refusal to grant Charlie ‘the medical treatment he needs’, the appropriations committee of the US House of Representatives passed an amendment on 19 July entitling Charlie to ‘permanent residence’ in America, only to be thwarted by the British court’s refusal to allow his release.14
Protestors took the fight to the hospital itself, amassing at Great Ormond Street and urging the families of other patients to sign their petitions and join the campaign. The hospital responded by calling in the police.15
Eventually, on 24 July, after a series of further medical tests, the High Court handed down its final judgment, upholding its original declaration that palliative care should begin.16 The decision was condemned by British politicians – with occasional UKIP leader Nigel Farage tweeting that the ‘establishment closed ranks’ on Charlie Gard’s parents and ‘took away their rights’17 – and in America, with Texas Senator Ted Cruz among the many asking, ‘WHY govt should have power to decide who lives & dies?’18
On 28 July 2017, Charlie passed away in a hospice. The doctors and the courts had got their wish. A child’s life had ended, when, in the words of Charlie’s mother, ‘Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.’19
If the watching world had been shaken by the matter-of-fact way in which the UK establishment had ordered a child to die, it did not have to wait long for a second quake. Alfie Evans20 was born on 9 May 2016, the first child of Tom Evans and Kate James. From two months of age, signs of developmental delay began to appear, and he then started to lose many of the abilities he had developed in his first months of life. At the age of six months, a series of tests showed that the delay was significant, although no specific disorder could be identified. In December 2016, Alfie was admitted to Alder Hey Children’s Hospital. By February 2018, the medical consensus was that Alfie had a progressive, ultimately fatal neurodegenerative condition, most likely a mitochondrial disorder, which was both catastrophic and untreatable. There was no chance of any recovery. Alfie could not breathe or swallow unaided, and the view of the clinicians at Alder Hey Children’s Hospital was that his quality of life was poor. Accordingly, in December 2017, the hospital applied to the High Court for a declaration that artificial ventilation should be withdrawn.
The sense of déjà vu does not end there. For, while Alder Hey may have felt unable to offer treatment, one medical establishment was willing and able: the Bambino Gesù in Rome, the same facility that had extended an offer to Charlie Gard. In February 2018, over several hearings at the High Court, Alfie’s unrepresented parents cross-examined the medical experts and pleaded with Mr Justice Hayden to refuse Alder Hey’s application and allow Alfie to travel by air to Rome for treatment.
Again, however, the High Court ruled that ventilation should be withdrawn. And again, despite arguing their case through to the Supreme Court and beyond, to the European Court of Human Rights, they were met with layers of judicial and medical resistance, notwithstanding the mounting public support in favour of keeping Alfie alive.
On 11 April 2018, after Mr Justice Hayden approved an end-of-life care plan, these supporters, like Charlie’s Army before them, congregated outside the hospital, chanting Alfie’s name and singing the Mariah Carey ballad, ‘Hero’. They were addressed by Tom Evans, who held aloft three passports – his, Kate James’ and Alfie’s – as his legal representatives explained to reporters that Mr Evans had the legal right to remove his son from the hospital. Alfie, it was said, was being falsely imprisoned: ‘the NHS has broken Alfie’s ancient rights under habeas corpus – a 13th century legal safeguard that prevents unlawful detention.’21
An appeal on Facebook saw Alfie’s Army grow over the days that followed, as the fresh legal challenge proceeded to court.
Protestors bearing balloons, posters, placards and teddy bears accumulated outside Alder Hey as the petition to save his life attracted close to quarter of a million signatures.22 The family’s local MEP, Steven Woolfe, a qualified barrister, told the media that ‘Alder Hey is more concerned with saving face than saving a young child’s life’.23
Mr Woolfe also evoked the 2014 case of Ashya King, a five-year-old boy with brain cancer whose parents defied NHS doctors and took him to Prague for proton-beam therapy, sparking an international manhunt. The parents were arrested, but ultimately Ashya was permitted to have the treatment in Prague, and it was a success. Speaking about Alfie, Mr Woolfe told daytime-TV show Good Morning Britain, ‘The same applied with the Charlie Gard scenario, the same applied with Ashya King . . . We now know with Ashya King, who lived, that our professionals make mistakes.’24
On 15 April, the Pope once more took an interest, referring to Alfie in his Sunday prayers,25 and, after the Court of Appeal rejected the latest appeal on 16 April, granted Tom Evans a personal audience. This was followed by Pope Francis offering his explicit support for the parents’ cause, tweeting a few days later: ‘I renew my appeal that the suffering of [Alfie’s] parents may be heard and their desire to seek new forms of treatment may be granted.’26
That same day, as the European Court of Human Rights knocked back a second attempt at appealing, 200 protestors attempted to storm Alder Hey Children’s Hospital, only thwarted by the lines of police officers providing state-backed muscle.
Tom Evans proceeded to initiate a private prosecution against three of Alfie’s doctors, eagerly reported across the world, including by the Daily Mail, which asked its readers, ‘Could medics face trial for conspiracy to murder?’27 The threats, abuse and intimidation towards hospital staff that ensued were perhaps predictable.28
Meanwhile, in further echoes of Charlie Gard, foreign citizenship was conferred on baby Alfie – this time by the Italian Ministry of Foreign Affairs – in an effort to remove him from the jurisdiction of the murderous English and Welsh courts. The American political and media interest peaked during the final days of the legal process, in late April 2018. On 25 April, as the Court of Appeal closed the doors on the final chance of moving Alfie to Rome, a vigil was organised outside the British Embassy in Washington DC, with politicians clamouring to offer support.29
Nigel Farage once more provided the legal translation for US viewers, assuring Americans that, ‘there is treatment available in Italy that is not available here’, and nodding as the Fox News anchor suggested that Alfie was a ‘hostage of the National Health Service’ and that ‘part of [the problem] is the NHS, they don’t want to risk the fact he goes over to Italy, he gets treatment, he has some quality of life and that’s a big embarrassment’.30
In the early hours of 28 April 2018, at twenty-three months old, Alfie died at Alder Hey. An angel had gained his wings. The state had, once more, got its way. The public mood in both cases was summarised in a post by a relative on the Charlie’s Army Facebook group: ‘What a sad world we live in, where judges merely look at legal arguments set out by professionals and not into the eyes of a baby they have the power to save.’31
Most of us will never have to confront the horror of making medical decisions concerning our terminally ill child. Even fewer of us will ever find ourselves fighting in a court of law to keep our child alive.
If pushed to imagine the unimaginable, I expect that our instinctive reaction to the plight of these parents would be not merely boundless sympathy, but solidarity. Would any of us, thrust as new parents into legal proceedings in which our child’s very existence was at stake, do anything different from Connie, Chris, Tom or Kate? Even if we were not ourselves manning the protests in support of Charlie and Alfie, we may well, upon reading about the cases, have shared a link to a Facebook fundraising group, or retweeted a message in support of their Armies.
Who would not rally behind parents opposing the almighty state trying to swoop into their private lives, remove their poorly infant from their arms and extinguish all hope? Who among us would not resist to our last breath the government’s attempts to harm a child, and do absolutely everything in our power to fight for their best interests?
While entirely reasonable, such questions are not as straightforward to answer as they may appear. To do so, we first need to break down some of the premises on which they are founded, and examine more closely some of the complex issues of law, medicine and morality that are at play when the courts intervene in the life of a child. A theme common to the cases of both Charlie and Alfie was a deliberate muddying of the waters by a variety of special-interest groups, leading to a fundamental and widespread misrepresentation of what those cases were actually about. As a result, many of us were unknowingly presented with an entirely false prospectus, and our sincere and heartfelt intentions – like those of the parents – were appropriated and exploited in service of ulterior political agendas.
To start with, we should take a look at the term ‘best interests’, because understanding how the law grapples with that principle – the best interests of the child – is key to understanding exactly what went on in the cases of Charlie and Alfie.
First, a potted history. The jurisdiction of the courts to intervene in matters relating to the welfare of children was developed by the courts during the late eighteenth and nineteenth centuries.32 Prior to that, the legal position was, put simply, that the father was king. He was legal guardian of his ‘legitimate’ children, with the mother exercising parental rights over a child born outside marriage. If a child was orphaned or otherwise parentless, the courts had powers of ‘wardship’ to take the child under the guardianship of the court, but had no meaningful role to play in the treatment of a child by her parents, unless and until the criminal law was breached.
Towards the end of the eighteenth century, the Court of Chancery33 began to develop a new way of approaching cases involving children, which correlated with a growing societal awareness that children had their own rights, distinct from the wishes and whims of the father. It was recognised that not only did children need to be protected by the criminal law from abuse and injury, but that it was in the wider interests of all of us that children be educated, properly cared for and helped to become healthy and useful members of society. It followed that it would sometimes be in society’s interests for the interests of the child to be promoted at the expense of the welfare or wishes of the parents, although this was heavily caveated, with the courts famously observing in one case, ‘[T]he father knows far better as a rule what is good for his children than a court of justice can.’34
Nevertheless, the slow relaxing of the paternal grip did eventually have transformative legal consequences. The mother of a legitimate child could claim custody or access from the father where the welfare of the child so required, if, for example, the father was unfit. Similar principles fell to be considered when the court was appointing or removing guardians. In 1886, the court-created notion of the welfare of the child was put on a statutory footing as a relevant consideration in custody disputes by the Guardianship of Infants Act, and gradually the balance tipped. In the twentieth century, the welfare of the child began to supplant matrimonial conduct as the deciding factor in matrimonial disputes, and the Guardianship of Infants Act 1925 not only gave mothers and fathers statutory equality in custody wrangles, but elevated the ‘welfare of the child’ to the ‘first and paramount consideration’.
This idea, that the welfare of the child was not just a consideration, but the consideration for courts dealing with cases involving children, is what underpins our legal system today, expressed in section 1 of the Children Act 1989: when a court determines any question relating to the upbringing of a child, ‘the child’s welfare shall be the court’s paramount consideration’.
The notion of ‘welfare’ is often expressed as ‘best interests’, which is the language used in Article 3 of the United Nations Convention on the Rights of the Child. In legal systems across the world, the absolute rights of the father have given way to the individual rights of the child.
The difficulty that can arise is that, for many children, it is hard if not impossible for them to express or enforce those rights, or to identify or take decisions in their own interests. Most of the time this is not an issue, as parents and guardians tend to agree how to raise their child, and do so, by default, with their best interests at heart. But where there is a dispute – between two parents, or between the parents and the state, or between parents and doctors – as to what is in a child’s best interests, the courts can be invited to decide.
In practice, the types of case in which the courts are called upon to apply the welfare principle broadly fall into two camps – public law and private law. Public law cases involve the state seeking to enter uninvited into the lives of a child and her family in the name of child protection. Where the state – usually a local authority – considers a child to be suffering, or at risk of suffering, ‘significant harm’,35 it can apply to the court for various orders. Two of the most common orders applied for are care orders, which transfer parental responsibility for the child to the local authority, and supervision orders, which place the child under the supervision of the local authority.
We’ll put this to one side for now, as we’re not immediately concerned with public law cases, and focus instead on private law cases involving children.
Where there is a dispute relating to the upbringing of a child between private individuals – most commonly divorced or separated parents – applications can be made to the family courts for a resolution. ‘Child arrangements orders’, for instance, can be applied for to regulate arrangements concerning when and with whom a child is to live, spend time or have contact. Of particular relevance for our purposes is what is known as a ‘specific issue order’. Under the legislation, a party can apply for the court to resolve a specific question which arises ‘in connection with any aspect of parental responsibility for a child’.36 As the definition suggests, this allows for quite a spectrum, from questions over whether a boy should be circumcised,37 to whether a child should be given the MMR vaccine,38 to how children should be educated where the religions of estranged parents place them at odds over schooling. In all private law cases, the test is the same: the welfare principle. The court will hear evidence and argument from the parties, and will form its own independent view as to what order is in the child’s best interests.
As for what ‘best interests’ entail, it depends on the scenario, but the Children Act39 lists some factors that the court must consider:
— The wishes and feelings of the child (considered in the light of her age and understanding);
— Her physical, emotional and educational needs;
— The likely effect on her of any change in her circumstances;
— Her sex, age, background and any characteristics which the court considers relevant;
— Any harm which she has suffered or is at risk of suffering;
— How capable each of her parents or other relevant person is of meeting her needs;
— The range of powers available to the court.
To give an example of the principle in action, a high-profile case in 201240 saw the Court of Appeal grapple with the question of whether two young boys of Orthodox Jewish parents should be educated as the father wished – at an ultra-Orthodox Hasidic or Haredi unisex school – or as the mother desired – at a co-educational ‘Modern Orthodox’ school. The distinctions were stark. The Haredi community do not permit children to watch television, in the main they do not have access to the internet or social media and mixing with non-Haredi children is forbidden. The Modern Orthodox school, by contrast, was far more permissive as far as matters such as television, religious dress and socialising outside the community were concerned. As the court noted, the importance of this decision went beyond a mere choice of school; it was ‘a much more fundamental way of life’ for the children.
It is difficult to do justice, in a summary, to the depth of the analysis into the meaning of ‘welfare’ and ‘best interests’ that the court engaged in, and the judgment as a whole makes genuinely fascinating reading, even for those with more in their lives than law (assuming such curious creatures exist). The assessment, the court said, takes into account ‘a wide range of ethical, social, moral, religious, cultural, emotional and welfare considerations’, including ‘everything that conduces to a child’s welfare and happiness or relates to the child’s development and present and future life as a human being’. The judgment ruminated on John Donne and the Aristotelian notion of the ‘good life’, the legal and societal imperative of respecting religious principles, and considered at length the likely impact of the two alternative schools on the children’s futures. Having heard extensive evidence, the conclusion reached was that, for a number of reasons – including the educational opportunities, the emotional impact upon the children and the fact that a more liberal education would still afford the children the chance to return to their religious roots, if they so chose, when older – the mother’s proposal best served the children’s interests.
And so, although it is understandable why to many people the notion of a court telling you how to raise your child provokes instinctive discomfort, if not outright hostility, the principle perhaps becomes easier to embrace if you view it not through the lens of the courts trampling on your parental rights, but as a societal guarantee that, wherever those who care for a child disagree, there is an independent adjudicator of last resort, whose priority above all is the best interests of that child.
It is not only warring parents, however, who can apply to the courts for specific questions to be decided. Bringing us back around to the cases in hand, the question of medical treatment of young children is also capable of being determined on a private application to the family court. Doctors have a legal and ethical duty to act in the best interests of a child or young person under eighteen years under their care.41 Most of the time, the parents’ views and the professional clinical opinions align. For the overwhelming majority of poorly children, the doctors and parents reach an accommodation on what treatment is in the best interests of the child. It is statistically exceptionally rare that clinicians and parents disagree to such an extent that a contested court hearing is required to decide the medical treatment.42
However, where there is a dispute, the mechanism for resolving it lies with the courts. Older children, for instance, may be competent to consent to medical treatment (the assessment of ‘competence’ involving a judgment on their maturity and ability to understand what is involved), but may refuse treatment that doctors believe to be in their best interests.
In 1993, in echoes of Ian McEwan’s novel The Children Act, a fifteen-year-old leukaemia patient refused a life-saving blood transfusion on the grounds that it contravened a tenet of his religion as a Jehovah’s Witness. The hospital applied to the High Court for permission to treat the boy in accordance with what the doctors believed to be his best interests. The court, while having regard to the boy’s wishes and religious beliefs as part of the overall assessment of his best interests, nevertheless ordered that the transfusion should go ahead.43 In a tragic footnote to this case, a few years later, when the young man was no longer a child, his leukaemia returned. As a competent adult, nobody could stop him refusing treatment, and he duly died as a martyr to his faith.
Where a child does not have capacity to consent to treatment, the decision lies with the parents, exercising their legal duties of parental responsibility. But parents, too, may not always be acting in their child’s best interests. In 2014, a very young boy, ‘B’, suffered severe burns in an accident. The skin graft that doctors needed to carry out was likely to require a blood transfusion; without this, there was a real risk of death. The parents, both devout Jehovah’s Witnesses, refused to consent to the treatment. The NHS Trust applied to the High Court for a determination. The High Court, perhaps unsurprisingly, confirmed the long-standing principle that the parents’ wishes, although deserving of ‘very great respect’, were ultimately ‘subordinate to welfare’, and the best interests of the child plainly lay in receiving this life-saving treatment.44 More recently, in 2019, Mr Justice Hayden, the judge in the case of Alfie Evans, ruled that a thirteen-month-old girl with life-threatening kidney failure should be treated with haemodialysis, as supported by Royal Manchester Children’s Hospital, contrary to the wishes of the girl’s parents that she be treated ‘only [by] the power of prayer’.45
And these scenarios illustrate graphically the importance of the welfare principle. Because, as much as no good parent would envisage themselves ever acting contrary to their child’s best interests, sometimes our judgment can be clouded. Whether fogged by religious dogma or stricken by grief, we can be fallible. We can, at our lowest, most hopeless ebb, conflate – entirely understandably and with the very best of motives – our own interests with those of the ones we love most. That is not a moral failing; it is to be human. But, in such circumstances, where others who love our child almost as much as we do worry that our preferred path may not be the best course for them, our society has a mechanism for ensuring, as far as we can, that the best course is followed.
This is why, in the Charlie Gard case, when Fox News’ Tucker Carlson voiced the sentiments of many on his network in tweeting, ‘The parents . . . should be able to decide his medical care’,46 he simply can’t be right. As a catchy, retweetable homily, this is smashing. As a statement of broad unqualified principle, it is ludicrous. There have to be limits. Otherwise Tucker Carlson is supporting the unfettered right of parents, such as those in the case of ‘B’, to condemn children to death, or to subject them to pointless, painful medical procedures.
As Great Ormond Street Hospital put it in their ‘position statement’, lodged with the High Court and published during the maelstrom of the Charlie Gard coverage, ‘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.’47
For any parent – indeed, any person – the notion that it can ever be in the best interests of a child for their life to end runs counter to every instinct we share. But, in considering what follows, it may help to remember that the function of the law – not only in this instance but across the legal system – is to grapple dispassionately with cases that appear before the courts. That’s not to say that there is no place for humanity; to the contrary, any justice system worthy of the name absolutely has to command respect for the way in which it protects and promotes what makes us human. But it also has to ensure that, when faced with the most difficult of cases, it reaches decisions that appeal to principle and reason, not just emotion.
The welfare principle – prioritising the best interests of children who are unable to stand up for themselves – operates no differently in cases involving decisions to withdraw life-sustaining treatment, where doctors and parents can’t agree on the best course for the child. Awful as it is to contemplate, there are severe medical conditions causing such suffering that the view is taken that it is not in a child’s best interests to undergo invasive, painful treatment in an effort to prolong a minimal quality of life.
I use the passive – the view is taken – because it would be a mistake to assume that the view against treatment is always held by the doctors. The courts have dealt with heartbreaking cases where loving parents of severely disabled children have found themselves arguing against life-saving treatment proposed by doctors, on the grounds that they fear the quality of life for their child would be so low that it is in their best interests to die. One such case in the 1980s48 concerned the mother of an infant with Down’s syndrome; the Court of Appeal ruled that a life-saving procedure should be undertaken, and this judgment, especially viewed through a twenty-first-century lens, has to be correct. But again, it gives the lie to the notion that parents should always have the final say, that there is no place for the courts in such situations.
In the cases of Charlie and Alfie, it was the doctors who were asking the court if it agreed that continuing to administer treatment was not in the child’s best interests.
Where the doctors, applying their professional judgment, form the view that treatment limitation might be in a child’s best interests, they apply to the High Court for a declaration. This is not because they are certain that they are right and are simply seeking a ‘rubber stamp’ from the court; it is because they need the court to decide what is right, and to declare, with fully evaluated reasons so that everybody involved understands, where the best interests of the child lie. As Katie Gollop QC, counsel for Great Ormond Street Hospital in the Charlie Gard case, wrote in an article with barrister Sarah Pope, ‘In a strongly disputed case . . . a hospital applies to the Court because it doesn’t know where the child’s best interests lie. Of course it has a view, but even as the hospital makes its application, it knows that there is another, powerful and deeply held contrary view, that is born of parental love outside its experience. A responsible hospital knows that the parents may be right.’49
To further ensure that all proper considerations are put before the court, the court will also appoint a guardian to represent the interests of the child; the argument will not be left solely to the hospital and the parents. Guardians are appointed by Cafcass (Children and Family Court Advisory and Support Service), an independent body with a duty to safeguard and promote the welfare of children in the family justice system.
At the High Court, the judge will receive evidence from medical experts, parents and any other witnesses, and then hear submissions from the barristers representing the hospital, the parents and the child’s guardian. There is a long stream of case law on how the ‘best interests’ test applies in end-of-life cases, but the key principles can perhaps be summarised as follows:50
And this exercise, we will see, is what underpinned the decisions in Charlie Gard and Alfie Evans.
Charlie’s illness – MDDS – was caused by mutations in a gene called RRM2B. The consequence of this mitochondrial disease was that his brain, muscles and ability to breathe were all severely affected. He had congenital deafness and a severe epilepsy disorder, with his heart, liver and kidneys also affected. The disease was progressive; since birth, he had lost movement in his limbs and the ability to breathe unaided. He could not see, and his ‘persistent encephalopathy’ meant there were no usual signs of normal brain activity. His parents accepted that, as it stood, Charlie’s quality of life was ‘not worth sustaining’.51
By early 2017, with Charlie’s life expectancy measured in months, all the treating doctors at Great Ormond Street agreed that artificial ventilation should be withdrawn, that he should be given palliative care only and that he should be allowed to die peacefully and with dignity. An expert team in Barcelona reached the same conclusion. The issue for the court was whether Charlie’s best interests lay in withdrawing ventilation or in having him flown to America for ‘pioneering’ nucleoside therapy.
The High Court was presented with evidence over several days from the world’s leading experts in mitochondrial diseases, including Dr Hirano, the neurology professor from the US offering the ‘pioneering treatment’. It emerged that the term was a misnomer. Nucleoside therapy had never been used on patients with Charlie’s form of MDDS; it had not even reached the experimental stage on mice. The doctor had never treated anyone with encephalopathy. There was no evidence that the treatment would have any benefit for Charlie; at best, Dr Hirano ‘expressed the hope’ that it might, given the modest benefit (a 4 per cent increased lifespan) it had had on patients with a different and less severe mitochondrial condition.
Great Ormond Street, nevertheless, upon Charlie’s mother learning about this therapy in December 2016, took steps in January 2017 to apply for ethical permission to attempt the treatment. However, a series of further seizures that month led to irreversible brain damage and a clinical consensus that nucleoside treatment would be ‘futile’.
At the time he first extended the offer, Dr Hirano had never even seen Charlie’s medical notes, let alone examined him. After speaking to consultants at GOSH and reviewing the medical records, the doctor concluded, ‘I agree that it is very unlikely that [Charlie] will improve with that therapy.’ He agreed with the other experts that the brain damage was irreversible, and that the chances of meaningful brain recovery were ‘vanishingly small’.
This caused the judge to pose the question, ‘If Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be better off than he is now, which is in a condition that his parents believe should not be sustained?’
It wasn’t simply a question of the likely benefit of the treatment; there was a real possibility that Charlie was in pain. The collective view of the treating doctors was that Charlie experienced ‘significant’ suffering, and that that outweighed the tiny theoretical chance of effective treatment. While nobody could be certain, and Charlie’s parents disputed the medical opinion, the court accepted that his ongoing ventilation, suction and treatment was invasive and capable of causing pain. Nucleoside therapy – the big unknown – may also have subjected Charlie to pain. All the doctors consulted in the UK and Barcelona agreed that treatment would be futile, that it ‘would be of no effect but may well cause pain, suffering and distress to Charlie’.
Charlie’s guardian, having listened to the evidence over the week of the hearing, concluded that ‘it is not in Charlie’s best interests to travel to America to receive nucleoside therapy. This is not pioneering or life-saving treatment, but a purely experimental process with no real prospect of improving Charlie’s condition or quality of life.’
The judge reached the same sad conclusion in his first judgment, on 11 April 2017.
Charlie’s parents appealed to the Court of Appeal with a new legal team, arguing, among other things, that the judge had applied the wrong test in law. It was suggested that the long-standing ‘best interests’ test shouldn’t be the only factor; instead, the courts should apply a test of ‘significant harm’, as they do in public law cases where local authorities are seeking to take a child into care. If the parents’ choice of medical treatment does not risk ‘significant harm’ to the child, it should be allowed, was the thrust of the argument. The Court of Appeal, and then the Supreme Court, disagreed. The lodestar, as the Children Act makes clear, is ‘best interests’. The Supreme Court pointed out that in the medical field this litmus is all the more important, as it reflects the legal and ethical duties of doctors to act in a child patient’s best interests. Requiring them instead to apply a ‘significant harm’ threshold risked putting doctors in the untenable position where they were administering treatment which they didn’t believe to be in a child’s best interests. In any case, Mr Justice Francis and the Court of Appeal had found that it was likely that Charlie would suffer significant harm if his suffering was prolonged without any realistic prospect of improvement.52
The unsuccessful application for permission to appeal to the Supreme Court was followed by an attempt to appeal to the European Court of Human Rights, which upheld the domestic courts’ use of the ‘best interests’ test, and declared the application to appeal ‘inadmissible’.53
Throughout these appeals, GOSH continued to treat Charlie. Following the European Court decision on 27 June 2017, the parents’ solicitors contacted Great Ormond Street asserting that there was new medical evidence. This prompted a flurry of excited news reporting. The ‘new evidence’ comprised the willingness of the Bambino Gesù hospital and Dr Hirano to accept Charlie, and new laboratory findings by Dr Hirano which had led him to the view that the likelihood of a positive effect on Charlie was ‘markedly improved’ compared to what was said at the hearing in April.
Accordingly, the hospital asked that the case return before Mr Justice Francis at the High Court. There followed a series of hearings between 10 and 24 July 2017, and a succession of further tests and scans.54 It emerged on the first day that Dr Hirano had still not, at the time of giving this opinion, actually seen or examined Charlie at any stage, nor had he read the judge’s findings. At the judge’s invitation, Dr Hirano and a doctor from the Bambino Gesù flew to England and examined Charlie the following weekend. Dr Hirano’s conclusion was that Charlie had brain damage, which was irreversible, and brain dysfunction, which was potentially reversible, although, ‘I certainly don’t expect that he would be normal. That’s clear.’ The doctor from the Bambino Gesù suggested that, at the time he offered to treat Charlie, he had not been fully aware of his condition, and stated that treatment ‘will probably not have a great impact’. They remained willing, however, and stated that it was in Charlie’s best interests to be treated with nucleoside bypass therapy at their respective hospitals.
A few days later, however, a full-body MRI scan confirmed ‘the reality . . . that Charlie is beyond any help even from experimental treatment’. By the time Mr Justice Francis handed down his final judgment on 24 July 2017, all parties were in agreement as to where Charlie’s best interests lay. The judge took the time to again praise Charlie’s ‘fine parents’, making clear that he was satisfied they had ‘nothing whatever’ to do with the ‘disgraceful’ threats and abuse made by others towards the hospital, and observing, ‘It is impossible for any of us to comprehend or even begin to imagine the agony to which Charlie’s parents have been subjected in recent weeks and months as they have had to come to terms with the decision that they have now made.’55
And so we can see that the dominant mainstream and social-media narrative was almost completely wrong. The awful reality was that, contrary to the statement by Charlie’s distraught mother, from the moment the case came before the court, Charlie never ‘had the potential to be a normal, healthy little boy’. The ‘pioneering treatment’ was offered by a doctor who had never even visited the patient and was unaware of the severity of his condition. It was at best experimental, having never even been tested on mice, with ‘vanishingly small’ prospects of improving the life of a terminally ill child, who, the court concluded, was likely to suffer pain and suffering as a result.56 By the end, what Nigel Farage conspiratorially claimed was ‘the establishment closing ranks’ in fact amounted to an unchallenged consensus among all medical experts involved.
But, irrespective of the medical arguments, it is clear that, at every stage, the decision revolved around the assessment of Charlie’s best interests. There was never a grain of truth in the claim that financial cost of the proposed treatment was the court’s primary driver; as the judge stated in the very first hearing, it was completely irrelevant. The efforts of the family raised well over a million pounds, but money was wholly unrelated to the assessment of Charlie’s best interests, for the simple reason that ‘best interests of the child’ and funding decisions by NHS Clinical Commissioning Groups (CCGs) are entirely separate issues.
There are of course legal cases in which patients challenge recommendations made by the National Institute for Health and Care Excellence (NICE) as to which drugs and treatments are clinically and cost effective, and cases in which courts are asked to judicially review decisions by CCGs not to make available on the National Health Service certain treatments recommended by NICE. While many such decisions turn on complex arguments of clinical effectiveness, it is not unfair to characterise these cases as based, at least in part, on financial considerations.
But – and I repeat in the vain hope that enough choruses might carry the message across the pond and through denser skulls – this had nothing at all to do with Charlie’s case. The suggestion that the clinical recommendation by the hospital and the declaration by the court had any relation to the ability of the family to pay, or the willingness of the NHS to make funds available, was a monstrous lie.
Likewise, the imported fiction that Charlie was a ‘prisoner of the state’ or a ‘prisoner of the NHS’ is easily disproved. The government is represented in litigation by the relevant body or minister. In public law cases where local authorities are applying for care orders, for instance, the applicant would be the local authority. In cases involving immigration, the relevant minister would be the Home Secretary. In health cases, it would be the Secretary of State for Health. This is clear because, at the top of every published court judgment, we can see the parties involved or interested in the litigation. The only parties involved or interested in Charlie’s case were the applicants, Great Ormond Street, and the respondents, Charlie’s parents and Charlie (by his guardian). The fact that GOSH is an NHS establishment is immaterial; identical issues would have arisen had Charlie been a patient at a private hospital.
Confusion also abounded over the role of the judges, with the assumption raging that the politicised judicial culture in America translated to England and Wales. We will look at this in more detail in a later chapter, but the crux of the UK constitution is the separation of powers – the thick black line between government and judiciary. Judges are politically independent, appointed by the Queen upon the recommendation of an independent Judicial Appointments Commission. They are not answerable to ministers or to MPs,57 nor do either have any influence over judicial decisions.
From whichever angle you look, the government had no role to play in this case at all.
So, when those staunch pro-death-penalty US Republicans like Paul Ryan and Ted Cruz proclaim with a straight face that ‘government has no place in the life or death business’, they are right, although not in the way they think. As an empirical statement of English and Welsh law, they are correct. But intended, as no doubt these comments were, as a normative judgment premised on the false yelps about English children being ‘sentenced to death by the British government’, they are utterly divorced from reality.
They are also irreconcilably estranged from their own legal system. The United States too, like many civilised countries in which children are recognised as having their own individual rights, has wrestled with these most difficult of cases. In 2016, a Los Angeles County Superior Court judge ruled that a toddler called Israel Stinson, who had suffered catastrophic brain injuries after an asthma attack, should have ventilation withdrawn, despite his parents’ wishes.58 Tub-thumping cries from Messrs Ryan and Cruz accusing the privatised US healthcare system of sentencing a child to death were surprisingly inaudible.
We see markedly similar themes throughout the case of Alfie Evans. The specialist medical evidence before the High Court in February 2018 was largely unchallenged. The doctors were not able to offer a specific diagnosis, but confirmed the distressing and bleak conclusion: Alfie’s progressive, ultimately fatal neurodegenerative condition meant that his brain was entirely beyond recovery. He was deeply comatose and unaware of his surroundings. His motor responses were either of an epileptic nature or spinal reflexes. His seizures, despite various combinations of anti-epileptics, were beyond control. He could not hear and would never develop any communication, either verbally or with sign language. While the medical opinion was that it was unlikely that Alfie felt pain, it could not be ruled out, and the doctors considered that the continuation of active intensive-care treatment ‘may well be causing him distress and suffering’. Alder Hey, and Alfie’s guardian, were of the view that prolonging Alfie’s life was not in his best interests.
At the first hearing, Alfie’s parents were not legally represented, having dispensed with their experienced legal team shortly before the hearing. The judge commented on how ‘extraordinarily impressive’ he found Tom Evans’ mastery of the issues and presentation of his case; however, in legal terms, his challenge to the hospital’s case was, in the words of the judge, ‘not entirely easy to state’, amounting, in essence, and wholly understandably, to the pleas of ‘a father unable to relinquish hope’. In the view of one of the medical experts, the conflict appeared to stem from a misunderstanding of some of Alfie’s behaviour. For example, what might, entirely understandably, be perceived by his parents as Alfie reacting to their touch or voice, was very likely not purposeful, but caused by his seizures. Videos of Alfie’s apparent reactions – including him appearing to yawn – were produced by Alfie’s parents, and many found their way onto social media and newspaper websites.59 The medical evidence reiterated, in spite of Mr Evans’ protestations, that this ‘yawn’ was merely reflexive.
Mr Evans’ wish was that Alfie travel by air ambulance to the Bambino Gesù hospital, or to a hospital in Germany, where he could be kept alive a little longer. All that this amounted to was ‘an alternative palliative care plan’, with the possibility of surgery – a tracheotomy and gastrostomy – which might allow Alfie to be ventilated at home. No further useful tests could be performed to improve Alfie’s condition. Mr Evans relied upon the evidence of a Dr Hubner of the Pediatric Air Ambulance, a private German company, to the effect that Alfie could be safely transported without risk. It transpired that Dr Hubner had lied about having seen all of Alfie’s files and had attended Alder Hey Hospital posing as a ‘family friend’ to surreptitiously – and potentially illegally – examine Alfie without the knowledge of the treating doctors. Most alarmingly, he had set out a ‘travel plan’ for Alfie with a recommended anticonvulsant regime that was entirely inappropriate. He further admitted in cross-examination that he had never used his service to transport a dying child.60
The judge accepted the conclusion of the medical evidence that treatment was ‘futile’. He stated that it did not follow axiomatically that ventilation should be withdrawn, as life holds intrinsic value. He took into account the Catholic beliefs of Alfie’s parents, and the position of the Roman Catholic Church as set out in an open letter by Pope Francis from November 2017. He had himself visited Alfie at the hospital; he had met the family and seen for himself the ‘very happy’ atmosphere surrounding Alfie. ‘His life has true dignity. The far more challenging question is whether – and, if so, how – that can be maintained.’
Travelling to Italy risked exposing Alfie to infection and causing him further brain injury due to the likelihood of uncontrolled seizures during the journey. There was the prospect that Alfie could experience pain. The judge concluded that ‘all of this might be worth risking if there were any prospect of treatment, [but] there is none’. He said he was satisfied that every reasonable option had been explored, and agreed with the hospital and the guardian that withdrawing ventilation was in Alfie’s best interests.
The parents appealed to the Court of Appeal, and then beyond, to the Supreme Court and European Court of Human Rights, and the primary legal argument was the same as in Charlie Gard’s case – that the wishes of the parents should, absent significant harm, take priority over the best interests of the child. Again, the courts affirmed the ‘gold standard’ of the welfare test, and again the Supreme Court emphasised that doctors ‘need to know what the law requires of them’.61 And again the European Court of Human Rights ruled the application to appeal inadmissible.
However, during this first set of appeals – more were to follow – certain facts began to emerge. It transpired that there had been another clandestine, potentially illegal inspection of Alfie, by Dr Jankowska, a paediatric oncologist smuggled into Alder Hey by Mr Evans. And this particular doctor had done this before, in another high-profile case involving a boy called Isaiah Haastrup. Her involvement in both cases was hard to fathom, given that neither Alfie nor Isaiah had any form of cancer.62
It also emerged that a ‘wholly inappropriate’ legal letter had been sent to Alder Hey a few months earlier by a ‘legally trained supporter’ of Alfie, threatening that, if the doctors removed mechanical ventilation, this would ‘constitute the offence of murder or manslaughter’.63
These troubling features appeared to have been instigated at the behest of ‘supporters’ or ‘advisors’ of the Evans family. Among these was an organisation called the Christian Legal Centre. On 11 April 2018, with the appeals seemingly exhausted, the case returned before Mr Justice Hayden for him to approve an end-of-life care plan for Alfie. On this occasion, Tom Evans was represented by yet another new barrister, Paul Diamond, this time instructed by the Christian Legal Centre. Mr Diamond made an application for a writ of habeas corpus – the effect of which would have released Alfie from his ‘unlawful detention’ at Alder Hey, and allowed him to travel. The only problem was that the application was, as the judge pointed out, ‘entirely misconceived’.64 Alfie wasn’t detained unlawfully; he was in the care of a hospital which was acting in what the law had determined were his best interests.
Nevertheless, this duff legal application did not shrivel and expire on the courtroom floor. It was instead circulated on social media as gospel, fuelling the ire of the crowds gathering outside Alder Hey Hospital. The following day, 12 April 2018, Tom Evans attended Alder Hey with a foreign doctor and air ambulance staff, armed with a copy of a letter written by a Mr Pavel Stroilov from the Christian Legal Centre. This letter, widely shared online, stated that, ‘as a matter of law it is your right to come to Alder Hey Hospital with a team of medical professionals with their own life-support equipment, and move Alfie to such other place as you consider is best for him. You do not need any permission from Alder Hey Hospital or the Court to do so.’
In fact, ‘as a matter of law’, this advice was utterly bogus. It not only incited the distressed Tom Evans to do something wholly unlawful, but led to a confrontation at the hospital which culminated in the police being called, serving only to escalate the tensions as Alfie’s Misinformed Army amassed at the doors. Hospital staff could not get to work due to the roads being blocked. A group of members of ‘Alfie’s Army’ entered the Paediatric Intensive Care Unit, causing fear and upset to other patients.
Pavel Stroilov, we later learned, was a law student and case worker for the Christian Legal Centre. The morning after the riot at Alder Hey, he was summoned to appear before the judge to explain his actions. Despite a stern warning from Mr Justice Hayden, Mr Stroilov’s unique interpretation of the law would not end with this letter.
Meanwhile, the misconceived litigation continued. Mr Diamond went to the Court of Appeal and argued that Alfie’s best interests were ‘irrelevant’; a curious interpretation of the case law. Again, he was told that his legal application had ‘no foundation at all’.65 The habeas corpus argument was taken to the Supreme Court, who repeated, yet again, the legal position that was obvious to all but Mr Evans’ lawyers. The inevitable repeat application to the ECtHR met the same inevitable fate on 23 April 2018,66 and was followed by the 200-strong attempt by Alfie’s Army to storm Alder Hey Hospital.
That same day, as Alfie was due to be extubated, the Christian Legal Centre’s lawyers were back at the High Court, this time arguing that the granting to Alfie of Italian citizenship by the Italian Ministry of Foreign Affairs had changed everything. It hadn’t. Mr Diamond’s argument was not rooted ‘in any recognised law’.67 Nevertheless, Pavel Stroilov, undeterred by the judicial fury rained upon him, now advised Tom Evans to institute a private prosecution alleging murder against the medical staff of Alder Hey,68 a story which unsurprisingly caught alight in the press. Equally unsurprisingly, the prosecution foundered at the first hurdle, having absolutely no cogent legal basis, but the added damage was done; the hysterical shrieks of ‘murderer’ outside the hospital were lent a veneer of false lawful legitimacy.
At 9.45 p.m. on 23 April, Alfie’s ventilation was withdrawn in accordance with the end-of-life care plan, which had been restructured by the judge to try to accommodate the parents and to ensure they could be with Alfie at the end. After he was extubated, Alfie continued to breathe unaided. This was entirely expected by the doctors, who had advised Alfie’s parents that he might continue to breathe for some days once ventilation was withdrawn,69 but was widely misreported as a significant and unforeseen improvement in Alfie’s condition. The Telegraph was among the outlets uncritically repeating Tom Evans’ untrue claim that doctors were ‘gobsmacked’ at Alfie’s breathing.70
The next day, an application was made to restore Alfie’s ventilation on the basis that his condition was ‘significantly better’ than the court had thought. It wasn’t, of course, but that did not stop Pavel Stroilov submitting a witness statement ‘littered with vituperation and bile’71 attacking the hospital staff and accusing the court of reaching a decision ‘on a false premise’. Mr Diamond’s submissions were slapped down by the judge as ‘ridiculous emotive nonsense’,72 with Pavel Stroilov described as a ‘fanatical and deluded young man’.73 Within twenty-four hours, the Court of Appeal was required to reiterate that nothing had changed, either in Alfie’s condition or in the ‘alternative treatment’ on offer in Italy. In this, the final hearing in the case, Alfie’s mother was represented by a new legal team. Her QC was instructed to put forward arguments never raised before the High Court, which were described by the Court of Appeal as ‘totally without merit’.74 The Court of Appeal was compelled to express concerns about the ‘darker side’ of the support offered to Alfie’s parents by people ‘whose interests may not in fact assist the parents’ case’.75
Alfie passed away three days later, on 28 April 2018.
The misconceptions in the case of Alfie Evans mirror those in that of Charlie Gard. The decision had nothing to do with money, or socialised medicine, or the government, or the strained relationships between the hospital staff and those violently campaigning in what they alleged to be Alfie’s interests. Alfie’s welfare, as the courts confirmed on a dozen occasions, was the lodestar.
The presidential prayers for Alfie’s ‘recovery’ were false platitudes. There was no meaningful alternative treatment plan; the claim by Nigel Farage on Fox News that ‘there is treatment available in Italy that is not available here [in the UK]’ was a lie. Likewise the papal suggestion that Alfie’s parents were seeking ‘new forms of treatment’. Ditto Ted Cruz – again – tweeting that there was ‘experimental treatment’ on offer. Lies, lies, lies. All that was offered in Italy was continued ventilation, with a possible tracheotomy that might allow Alfie to spend an extra few months with his parents in Munich. Fox News’ imputation that Alder Hey’s paediatric specialists were refusing to allow Alfie treatment that might give him ‘quality of life’ due to their potential ‘embarrassment’ is one which less forgiving doctors might have considered the appropriate subject of a defamation claim.
Much was made about the case of Ashya King, the five-year-old whose parents succeeded in treating him with proton-beam therapy in the face of contrary medical advice. But this, as with so much, was a false comparator. Ashya’s parents and the treating doctors at Southampton Hospital agreed on the suitability of the parents’ preferred treatment – proton-beam therapy. The sticking point was that it wasn’t available in the UK on the National Health Service; NHS England would instead authorise and fund this treatment abroad for certain conditions. Ashya’s precise illness, medulloblastoma, was not covered. His parents, having identified a hospital in Prague offering proton therapy, took him from England without telling Southampton Hospital staff and travelled to the Czech Republic via Spain, sparking concern for Ashya’s wellbeing and a series of court orders, including ultimately a European Arrest Warrant for the parents. However – and this is key – the hospital never opposed the family’s decision to obtain proton-beam therapy. The NHS could not offer it, but it would support any arrangements for Ashya to travel safely abroad if another hospital could arrange the treatment and if it could be independently funded. Ultimately, after the media circus had died down, the matter resolved with the High Court approving a treatment plan agreed between the NHS doctors and the parents, whereby Ashya would receive proton therapy in Prague, funded by private donations. And, as ever, the principle guiding the judge’s decision was the best interests of Ashya. The distinction between the cases of Ashya, Charlie and Alfie was that, in the former, there was no dispute over where the child’s best interests lay.76
For all the professed concern for the welfare of Alfie and the system’s treatment of his parents, very little was said by the most vocal talking heads about an indisputably worrying facet of the story: the witches’ brew of unqualified and inaccurate legal advice; the clandestine examinations of children by doctors offering dangerous and uninformed prescriptions; and the uneducated interventions of politicians and special-interest groups serving only to raise false hope and antagonise the delicate relationship between doctors and parents at the most difficult time in these young people’s lives.
Regrettably, in what might most charitably be described as a gross dereliction of journalistic duty, the tabloid newspapers offering daily front-page coverage of the cases devoted little if any time to scrutinising the claims and bona fides of the groups and individuals descending on the families. Instead of exposing these legal and medical ‘miracle cures’ as the off-the-back-of-a-lorry wares of exploitative spivs, the media amplified the nonsensical announcements that doctors were going to be prosecuted for murder, and celebrated uncritically the bogus promises of new treatment.
And it is perhaps easy to lose sight, amid all the performative displays of public ‘support’ for Alfie’s parents, of how uniquely vulnerable and alone those young people were. In their most desperate hour, they were targeted and exploited as pawns in the games of others. This is why there is, let me be clear, no criticism intended whatsoever of the parents of Charlie or Alfie. They could be any of us. Charlie and Alfie could be our children. The judge’s description of their predicament as ‘a living hell’ does not even come close. To pursue every possible avenue and to turn every single stone is a fundamental condition of the parental bond; cold rationality is the expected function of the legal system, not a parent facing losing a child. To the extent that the cases of Charlie and Alfie took more circuitous and tumultuous routes than may, in hindsight, have been in the best interests of anyone involved, that is not the moral fault of Chris Gard, Connie Yates, Tom Evans or Kate James.
But the same cannot be said of the groups exploiting these parents’ vulnerability – their unknowable grief – for alternative, self-serving causes. And it is important to look at exactly who was pulling those strings.
The choral chants of religious dogmatists pervaded the public campaigns in both cases, as pro-life lobbyists swooped on the stricken parents, egged on by misleading papal proclamations and Catholic heads of state, such as the President of Poland, Andrzej Duda, who tweeted, ‘Alfie Evans must be saved! His brave little body has proved again that the miracle of life can be stronger than death. Perhaps all that’s needed is some good will on the part of the decision makers. Alfie, we pray for you and your recovery!’77
The Guardian identified one figure in particular as instrumental – an American activist, based in Italy, called Christine Broesamle.78 She had connections to the Italian ‘Lawyers for Life’ network, and together they provided advice to the parents of both Charlie and Alfie. It was she, the Guardian reported, who arranged for the surreptitious medical examinations of Alfie Evans and Isaiah Haastrup, and, with a ‘seemingly endless pit of money and contacts’, had arranged for the air ambulance to whisk Alfie to Italy. She too was credited with organising Tom Evans’ personal audience with the Pope.
It was also reported that Ms Broesamle was responsible for connecting the Evans family to the Christian Legal Centre. The CLC is an offshoot of Christian Concern, an organisation which has campaigned publicly against LGBT rights, equal marriage, stem-cell research and transgender rights.79 It was also involved in coordinating the open letter, signed by thirty-seven MEPs, which condemned the ‘outrageous outcome’ in Charlie Gard’s case.80 The CLC counts among its volunteers the aforementioned Pavel Stroilov, a former researcher for ex-UKIP leader Gerard Batten and an apparent law student. It was Mr Stroilov who was responsible for drafting the more legally illiterate advice given to Tom Evans, acting in a way described by the judge as ‘inconsistent with the real interests of the parents’ case’.
Ms Broesamle stoked the fires back in the US as she told a Christian fundamentalist radio station that there should be ‘riots’ in Britain over doctors ‘hell-bent’ on killing children to ‘cover something up’. And the messages hit home. An analysis, published by the London School of Economics, of the online campaigns by Charlie’s and Alfie’s respective Armies found that ‘a large volume of Twitterstorm sending out negative messages about British judiciary and healthcare institutions seemed to emerge from American sources, many of whom identify with right-wing positions’.81 During Alfie’s proceedings, dozens of people gathered outside the UK Embassy in Washington DC, waving placards reading, ‘Make Britain Christian Again’.82
Also among those organising vigils for both Charlie and Alfie was Reverend Patrick Mahoney, an executive director of the Christian Defense Coalition, known in the States for his involvement in the campaign to keep Terri Schiavo alive.83 Back home, the domestic gallery was treated to op-eds published by Fox News in which commentators drew tenuous links between Charlie Gard’s case and the unacceptably permissive British attitude to abortion.84 The campaign to grant Charlie US citizenship was championed by Congressman Trent Franks, a long-time picketer of abortion clinics.85
Other major figures in the US pro-life movement hurled themselves on the bandwagon. Catherine Glenn Foster, president and CEO of Americans United for Life, flew in to visit Charlie in hospital,86 before holding a press conference in Washington DC in which she warned, ‘This is what happens when you have laws designed to promote death over life,’ sentiments uncritically repeated by Breitbart.87
Breitbart News Network is a self-styled ‘alt-right’ media outlet, formerly run by Donald Trump’s one-time Chief Strategist Steve Bannon, and their interest in Charlie and Alfie feeds into a linked dimension of the Fake Law narrative: the exploitation of both cases to push political messages about American healthcare.
Charlie Gard’s case in early 2017 coincided with efforts by President Trump to repeal Obamacare – characterised by US Republicans as a paving stone on the road to socialised medicine – and the opportunity to dishonestly spin the case as an example of the dangers of ‘single-payer healthcare’ was irresistible. Breitbart warned its readers:
Americans may find this point of reference difficult to fathom, but it is staring them in the face with the potential for single-payer, government-run healthcare, in the new fervour for laws that allow physician-assisted suicide, and in the periodic push for acquiescence to external bodies, such as the United Nations Convention on the Rights of the Child, a treaty that allows the U.N. to decide the rights of children in any member nation.
[. . .]
Charlie Gard’s case is one that could easily set a precedent for the power of government and the judiciary over health care, parental rights, education, and many other aspects of life. As can readily be seen throughout Europe and in the United States, such precedents and their powerful messages are difficult to rip out once embedded into the bureaucracy and the culture.88
Fox News, Breitbart, state media, radio shock jocks and Republican politicians clamoured to draw fallacious conclusions to leverage domestic sympathy for their campaigns. Donald Trump’s intervention – his tweeted proffering of unspecified ‘help’ – was the most high-profile example of this calculation in action.89 The alleged failings of the UK health system formed a recurring theme of Trump’s 4 a.m. tweets over the following year, as he railed against Democrat support for ‘Universal HealthCare’.90 Sure enough, the culture and political war still not won by the time of Alfie Evans in 2018, the Republican establishment fired the ignition once more to drive home the message that socialised medicine allows the government to kill your children.91
Senator Ted Cruz again expressed his horror at the consequences of ‘socialised medicine’,92 echoing a high-profile US blogger, who explained, ‘Free health care for your children means that they are the property of the state.’93 Former governor of Arkansas Mick Huckabee told Fox News viewers, ‘The British government has said no – we’re not going to let him leave, we’re going to go ahead and kill him. I just find this chilling.’94
The hostility to the National Health Service was not solely American. British politicians such as Nigel Farage were happy to misrepresent the cases as the unhappy products of our approach to healthcare. After being invited by Fox News presenter Lauren Ingraham onto The Ingraham Angle and asked why ‘Britain’s socialised medical system’ and the ‘courts in the EU and in the UK’ were preventing Alfie seeking ‘alternative medical treatment’, Mr Farage explained: ‘there is treatment available in Italy that is not available here . . . Yet what happens here is our state-run medical system decides there’s nothing else that can be done and, backed up by state courts, they make a decision that those parents are not fit to move their child somewhere else . . . It’s classic of the establishment closing ranks; the state being all powerful. And, frankly, what is happening right now is a form of state-sponsored euthanasia and I hate it.’95
Notwithstanding public proclamations of support for free-at-the-point-of-use healthcare, Nigel Farage was caught on video in 2012 telling party supporters that he would ‘feel more comfortable’ if UK healthcare was opened up to the ‘marketplace’.96 At best, his willingness to lie about the NHS’ involvement in the cases of Charlie and Alfie was an exercise in self-publicity, but some may find that it sits neatly with the principles underlying a self-proclaimed libertarian movement that finds its philosophical counterparts in the red states.
The peripheral involvement of the European Court of Human Rights in the two cases also presented an open door through which to ride another tired UKIP hobby horse: anti-European Union sentiment. During the same interview on Fox News, Nigel Farage did not correct host Lauren Ingraham’s claim that the decisions involved ‘an EU court’, a falsehood repeated by Breitbart. We will look in more detail at the European Court of Human Rights in Chapter 5, when I will unapologetically make the same point again, but, for the educational benefit of all, it cannot be stated loudly enough that the ECtHR is not ‘an EU court’.
And so, as the tumult built and the lies of the various factions piled atop and alongside each other as far as the eye could see, it became apparent that it was in nobody’s interests to correct anybody else; the confusion benefited all. The more scandalous the cases could be made out to be, the greater the weight they lent to the campaign, whichever of the campaigns that may be. Thus developed the silent but discernible conspiracy of global misinformation, accelerated and amplified by Twitter and Facebook, in which weeping parents were paraded as political mannequins, and hospitals were stormed and doctors were threatened with death, and judges were called Nazis, and in which, ultimately, the truth became just one among many innocent victims in two tragic cases with no winners on the ground, but a swarm of salivating vultures circling above.
The stories of Charlie Gard and Alfie Evans serve as case studies of the power of misinformation to exploit our shared humanity and manipulate our instinctive desire to help those in need. They also demonstrate our vulnerability.
By casting a fog over the facts and drilling into our deepest and most primal fears, those pushing their own agendas can persuade us that we are on the side of the angels, all the while commandeering us as unwitting components in a global social-outrage machine serving an entirely different purpose.
I can completely understand what motivated people to join Charlie’s Army and Alfie’s Army. For most of them, it was love. They were bound by a desire to help parents in their darkest hour, and to fight for the lives of children whom they thought needed them. What could be nobler than protecting a child from tyranny?
But they know this. The engineers of the outrage machine, the peddlers of Fake Law, they understand the resonance of cases like these. And they are adept at manipulating us, at harnessing the power of solidarity and twisting it into the pliable rage of the mob. So it is that we can be estranged from our first principles, convinced that the law operates so as to ignore an innocent child’s best interests, rather than to enshrine them, and from there it is a wrathful hop and skip from joining a Facebook group to, as happened above, sending death threats to doctors and nurses and calling for ‘murderous’ judges to be hanged.97
The need for public legal education when cases like those of Charlie and Alfie hit the headlines cannot be starker. There was, in both of these cases, simply too great a volume of misinformation and lies for the truth to get a look-in. Calm and sober explanations by patient family law practitioners as to how and why the law operates as it does simply didn’t fit the multiple agendas at play.
And one of the many tragedies of the representations in these cases was how genuine arguments of legal, moral and ethical substance were consequently drowned out. Please don’t mistake my contempt for the dishonesty mongers as unqualified support for the decisions in either case, nor for the way in which the English courts balance the conflict between the best interests of the child and the views of the parents. There is a wealth of academic literature in which the decisions of the courts, and the unqualified paramountcy of the welfare principle, is criticised. Although I am personally not persuaded by them, there are strong and well-constructed arguments in favour of introducing a higher threshold in cases where the courts are determining an application which could result in life-sustaining treatment being withdrawn.98 A ‘significant harm’ test has its objective attractions, even if I am not lured.
But a sensible discussion on the nuances of the legal argument was not what the special interests in these cases were seeking. They came not for principled debate, but to paint chimeras in the brightest colours on their palettes. Similarly, a genuine, unarguable scandal in Charlie Gard’s case was how, due to reforms introduced in 2012 which removed legal aid from most private law family cases, Charlie’s parents were refused publicly funded legal assistance or representation due to stringent means tests. They were instead reliant on solicitors and barristers working pro bono – without a fee – to fill the immoral lacuna in the law brought about by governments cynically calculating that legal aid is an easy, popular cut.
This pernicious, parsimonious approach to dealing with matters of life and death is not only offensive on principle; refusing vulnerable parents access to qualified legal representation creates the obvious risk of those parents finding themselves exploited by the Pavel Stroilovs roaming the legal wastelands, armed with their bogus advice and servicing shadowy third-party interests. At your lowest ebb, the government would rather expose you to the risk of even further harm at the grasping claws of opportunistic predators than ensure you have access to competent legal representation in matters of literal life and death. To their enormous credit, Chris Gard and Connie Yates, as part of their campaign for a ‘Charlie’s Law’ recalibrating the ‘best interests’ test, are also fighting for this appalling denial of access to justice to be remedied, for means testing to be removed so that no parent has to worry about affording a lawyer when their child’s life is in the balance.
But it’s an injustice which those devoted activists with the placards, the megaphones, the helicopters and the prime-time TV programmes are sadly not as interested in covering.
By letting the Fake Law narratives win, and inadvertently lending our support to their cause, we become unwitting contributors to injustice, rather than its vanquishers.