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Saturday 8 June 2019

ethics of medicine

The brief and momentous life of Charlie Gard

By Rachel Ellis

On Sunday 2 July 2017, Pope Francis called for Connie and Chris to be allowed to “accompany and treat their child until the end”.

The following day, President Donald Trump followed suit. He tweeted: “If we can help little #CharlieGard, as per our friends in the UK and the Pope, we would be delighted to do so”.

Charlie Gard, Connie Yates’s baby, was 11 months old and dying of an incurable condition. Connie and her husband Chris Gard were in a wrenching battle for their son’s life.

And while they described themselves as “the last people to seek publicity”, their private trauma had started spinning out as a social-media-fuelled, global crisis of conscience.

Charlie Gard had become a hashtag. A symbol in the culture wars over the rights of parents and the authority of doctors, a cause célèbre for believers in the sanctity of life and campaigners for human dignity, a political pawn in the argument between private and public healthcare.

 

Chris and Connie welcomed the support of President Trump – and subsequently visited the White House to thank the administration, meeting with vice-president Mike Pence in December 2017, who described it as an “honour” to have met the couple.

But they also feel they were exploited by others. The former UKIP candidate Alasdair Seton-Marsden, who at one point was the couple’s spokesman, said in a US TV interview that Charlie was “being held captive by effectively the British state and the British national health system”.

Connie Yates and Chris Gard with a petition of signatures supporting their case

The life of Charlie Gard, the campaign waged by his parents, the public hounding of Great Ormond Street Hospital’s doctors, nurses and management, the tortuous legal process, the pronouncements and posturing from people in public life, the moralising free-for-all in old and new media transfixed the world for four months during the summer of 2017. It has the hallmarks of a modern political frenzy which left everyone involved traumatised, manipulated – and now forgotten.

But what actually happened? Nearly two years after Charlie died, can we reconcile what we feel and what we think, our sympathies for Charlie Gard’s parents and our understanding of the choices that we ask doctors to make?

In the past few months, I have spoken to as many people possible involved in Charlie Gard’s life, his care and the arguments that flared up around him. I talked at length to Connie and Chris, but they have asked not to be quoted: where I reference what they have said, it’s only from previously published comments. As well as the lawyers, people at the hospital have talked for the first time. All of them have done so to try and answer a question: What, if anything, is there to learn?

 

The story began back in 2015 when Connie Yates, 33, a carer for young adults with learning difficulties, and her partner Chris Gard, 34, a postman, from the London suburb of Bedfont, discovered they were expecting their first child.

The pregnancy was straightforward and when Charlie was born on 4 August 2016 he was healthy. Connie and Chris were over the moon. However, they only had their baby at home for eight weeks.

The couple did not know they were both carriers of a genetic defect known as RRM2B which meant that Charlie had been born with a rare, progressive condition called mitochondrial DNA depletion syndrome.

This causes a severe depletion of the amount of mitochondrial DNA in the tissues of the body which, in his case, caused muscle wasting, brain damage and breathing problems. He was also deaf and had a severe epilepsy disorder.

Alasdair Seton-Marsden said Charlie was “being held captive by effectively the British state and the British national health system”

The first sign of problems was when he was eight weeks old; although Charlie was feeding well, he wasn’t gaining any weight and was still in his newborn clothes.

He was admitted to his local hospital, but after eight days transferred for more specialist care at Great Ormond Street Hospital, where he was put on artificial ventilation because his breathing was shallow.

Great Ormond Street Hospital – often just referred to as GOSH – is Britain’s best and most revered children’s hospital. In some areas of paediatric care, it is considered the best in the world. Its treatment of desperately sick children means it has long been a recipient of large charitable donations and popular fund-raising campaigns.

There was a sense of relief for Connie and Chris that Charlie was being treated at such a revered medical establishment.

In November 2016, the couple were given the news of their son’s condition. He had mitochondrial DNA depletion syndrome, there was no treatment and no cure. His parents were given the devastating options that he could die in hospital, die at home, or die in a hospice.

To some of the parents of sick children as well as others involved in paediatric care, GOSH has a reputation for arrogance as well as excellence. Its consultants are renowned as the best in the world at what they do, but some are felt to be stronger on clinical expertise than emotional intelligence.

Exactly what happened in the painful exchange between Charlie Gard’s parents and his doctors is, to this day, not fully known except by those involved. But it was the beginning of the breakdown in trust. The couple still have nothing but the highest praise for the nurses and doctors who looked after Charlie day in, day out, but they certainly didn’t agree that Charlie should be allowed to die, It’s a view that hasn’t dimmed over the past two years.

Connie went into fight mode for her son. She turned to the internet for a solution and discovered nucleoside bypass therapy: here was a treatment being offered by Professor Michio Hirano, a neurologist at Columbia University Medical School in New York.

The scene outside the High Court during the Charlie Gard case

Based on laboratory studies, he believed (and continues to believe) that by giving children with mitochondrial depletion syndrome nucleosides – naturally occurring compounds that their body isn’t able to produce – it could lead to their mitochondrial DNA synthesising again, potentially improving symptoms.

By Professor Hirano’s own admission, the treatment – an oral medication added to a baby’s milk – was experimental. Indeed, no children with Charlie’s condition, then or even now, have received the treatment. It had, though, been given to at least 18 patients with a similar but less severe mitochondrial condition and has brought about “dramatic clinical improvements”.

Initially, in January 2017, Great Ormond Street Hospital agreed to a three-month trial of the treatment and an ethics committee meeting to discuss providing this treatment in the UK was scheduled.

Meanwhile, Connie and Chris started to engage with the media to raise £1.2 million to send Charlie to the US for the treatment privately – in their view a back-up, should the treatment not be allowed at Great Ormond Street.

But by this point a disagreement between the family and the doctors was hardening. After Charlie suffered a series of fits, doctors changed their minds about the treatment. They said his brain damage was “severe and irreversible” and that treatment was “potentially painful but incapable of achieving anything positive for him”.

The ethics committee meeting was cancelled, the offer of Charlie having the treatment at Great Ormond Street Hospital was withdrawn and mediation was not provided. Connie and Chris disagreed, and wanted to give the treatment a try. The battle lines between the family and the doctors became entrenched.

Dominic Wilkinson, a consultant neonatologist and professor of medical ethics at Oxford University, says that, even in the best hands, disagreements will occur because these are deeply difficult ethical questions.

“It is the nature of these decisions, not always a sign of failure,” he says. “However, there are two wider phenomena that are feeding into this discourse; scepticism of experts and the belief that professional opinions are questionable or not reliable.

“Families struggle to believe what they are hearing, question whether they can trust what they are hearing and go out looking for something else in the hope that they will hear something different.”

Supporters of Gard and Yates outside the Royal Courts of Justice

The difficult negotiation between parents and doctors over the best treatment for their desperately ill child – the type of heart-breaking and ethically challenging decision made every day in neonatal and specialist NHS children’s wards – now turned into a harrowing court case.

The couple believe mediation could have helped resolve the dispute. However, speaking for the first time about the case, Great Ormond Street Hospital chief executive Matthew Shaw, who took up the position in November 2018 – over a year after Charlie died – questioned whether mediation would have worked in a case like this.

“Mediation is not the panacea for resolving every dispute. Once relations have broken down, we have missed the opportunity,” he says.

 

Few were left unscathed by the high-profile court court case that ensued in 2017. It went before the High Court, the Court of Appeal, the Supreme Court, the European Court of Human Rights and then back to the High Court.

At the centre of the case, brought to the courts by Great Ormond Hospital, was the hospital’s view that it was in Charlie’s best interest not to have nucleoside by-pass therapy initially, that life support should be withdrawn and palliative care provided.

After the High Court, the case went to the Court of Appeal, the Supreme Court, the European Court of Human Rights and then back to the High Court

In contrast Connie and Chris wanted Charlie to be put on a three-month trial of the nucleoside by-pass therapy, arguing there was no harm in trying.

Despite their extensive medical training and collective wealth of wisdom, doctors at Great Ormond Street Hospital were vilified by many for their stance, even though their view was supported by the courts. Bound by patient confidentiality, as they still are, there was little they could say publicly about the case – and to some this was construed as cold and uncaring.

There were also concerns by many staff at the hospital that no-one either from the board or the NHS were looking after their interests. On the wards, the complaint was that no one was standing up to defend them and the hospital in these extraordinarily difficult circumstances. A number of staff required long-term counselling for stress.

Connie and Chris made repeated emotional public appeals – standing on the steps of the High Court clutching Charlie’s beloved monkey – expressing their desire for doctors to give this treatment a go in the hope it might help Charlie.

“Historically, the power in these cases has been with the hospital, and until relatively recently there was a much more deferential attitude to doctors and the medical establishment,” says Daniel Sokol, a barrister and medical ethicist. “But with social media, it is arguably now the other way around; there is an asymmetry of information – most comes from the family and it is not always clear what the actual situation is.”

In this light, it’s easy to see how the hospital became the villain. Everyone felt the parents’ pain: who wouldn’t want to do everything possible to save their child’s life? The treatment was not invasive – simply added to a child’s milk with few side-effects – and if Great Ormond Street wasn’t going to provide it, Connie and Chris had raised £1.2 million in a month to send Charlie to the US for the treatment privately.

However, this case wasn’t about having the money to pay for a treatment, it was about Charlie’s best interest; and the hospital’s view – and that of the courts – was that it was not in Charlie’s best interest to provide the treatment.

Lawyers outside the Royal Courts of Justice during the Gard case

“This case has never been about affordability, but about whether there is anything to be done for Charlie,” said judge Mr Justice Francis.

The other medic to be called into question during the case was Professor Hirano, the American neurologist offering the experimental nucleoside by-pass therapy without seeing Charlie in person, with some suggesting he unfairly gave the parents hope.

“I would like to think he was well meaning, but he was, in my opinion, irresponsible by giving views based on incomplete information and gave the parents false hope,” says Daniel Sokol. “He made claims that muddied the evidential waters and caused more harm than good – his interventions caused considerable distress.

“With social media, it is fairly easy for a family to find a doctor somewhere in the world who will say it is reasonable to do what the family wants. However, being an expert comes with a considerable responsibility; you must have sufficient knowledge and evidence to support your view.”

It wasn’t just the medical profession that was under scrutiny – it was the legal system too. The couple did not qualify for legal aid, putting them at a significant disadvantage against the deep pockets of the hospital, so they relied on the mainly pro bono work of lawyers.

Connie has said it felt like the odds were stacked against them from the start. Their first lawyers, Bindmans, confirmed the couple had paid them “what they could”, following which their work was pro bono (the final bill is likely to have run into tens of thousands of pounds).

 

The Pope made a comment about “treatment” that may have been misinterpreted

It was the media furore surrounding the case, the extraordinary intervention of the Vatican and the White House, and the way it was exploited by pro-lifers which made this case unique.

At the end of 2016, Charlie’s parents made a decision to engage with the media to raise money through GoFundMe to send Charlie to the US for treatment. Yet nothing could have prepared them for the febrile media coverage and social media reach that followed, which focused on emotion rather than fact.

On the Sunday just days after the couple lost their appeal in the European Court of Human Rights, Pope Francis weighed in to say they should be allowed to “treat their child until the end”.

However, it is understood that there had been a misunderstanding at the Vatican in the interpretation of the language, because “care” and “treat” are the same words in Italian, and under Catholic orthodoxy a parent has the right to care for their child. (Others tell a slightly different story: they say there were conservatives in the media operation of the Vatican who wanted to seize on Charlie Gard as a sanctity-of-life case.)

When Trump tweeted his support the following day, he was immediately accused of using the case for his own political ends. The president had been fighting to repeal and replace Obamacare since the day he came into office on January 20 that year. Here was the perfect example of “socialised medicine” and why government has no business in healthcare.

By the time the Gard case became international news in the summer of 2017, the House of Representatives had already voted to pass the American Health Care Act on 4 May and it just needed to go before the Senate at the end of July.

The Gard case, just weeks before the Senate vote on 27 July, was seen as a gift for Trump’s argument. Trump would lose in the Senate by the single, dramatic thumbs-down vote of Senator John McCain, who succumbed to a brain tumour in late 2018, and has remained a nemesis for Trump even after his death.

The pressure from John McCain over healthcare may have influenced the president to become involved

Speaking at the time, Helen Ferre, director of communications at the White House, said: “Upon learning of baby Charlie Gard’s situation, President Trump has offered to help the family in this heartbreaking situation. Although the President himself has not spoken to the family, he does not want to pressure them in any way. Members of the administration have spoken to the family in calls facilitated by the British government. The President is just trying to be helpful if at all possible.”

Concerned by the President’s tweet, it is understood that Great Ormond Street Hospital, by indirect means, gave background information to White House staff about the case, to ensure they had the full picture. Trump – responding to the way conservatives on social media and Fox News had highlighted the Gard case – saw an opportunity to further his political effort to kill Obamacare.

We asked the White House, the Vatican and Professor Hirano to contribute to the article, but they all declined.

 

Donald Trump offered to help Charlie’s parents at a time of legislative battles over healthcare

Many have expressed their concern about the role of social media in this case. Mr Justice Francis, in his final statement to the Court, said: ‘The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based.’

Dr Ranjana Das, a senior lecturer at the University of Surrey, analysed the Facebook Charlie Gard support campaign and found seven clear traits.

These included:

  •  clear moral distinctions between those who supported the Gards and those who didn’t;
  •  evidence-free blame using emotive language;
  •  a consistent use of anecdotes to reject professional expertise;
  •  a steady and highly selective circulation of headlines and stories from well-known populist media sources;
  •  the sporadic, but nonetheless critical, involvement of populist public figures.

A further analysis of the Charlie Gard Twitterstorm revealed heavy use of violent words such as “killed” and “murder” linked to GOSH – with no basis in evidence – with a substantial section of negative tweets coming from right-wing US profiles.

Three days after Trump weighed in, a set of conservative groups all opposed to abortion – the Susan B Anthony List, March for Life, Concerned Women of America and Americans United for Life – held a press conference announcing a campaign to “Save Charlie Gard” and a “social media push” to raise awareness and support for Charlie and his parents. The Rev Patrick Mahoney, an evangelist who has demonstrated outside abortion clinics, flew to the UK to pray at Charlie’s bedside.

One of the most emotive examples was a meme which was retweeted by Chanel Rion, a reporter for the right-wing pay TV channel OAN, One America News Network. It read: “Tiny England’s God complex. Socialised medicine death panel orders killing little Charlie Gard. Parents wishes ignored. World’s wishes ignored.”

Dr Das concluded: “This is of public relevance because it is both symptomatic of and potentially impactful for the climate of opinion on the kind of relationship that is unfolding in the UK, and potentially other Western democracies, between public institutions and private actors.”

Staff at Great Ormond Street were subjected to “serious threats and abuse”, and Connie and Chris received abuse too from people who thought they should be with their child, not in court.

 

Supporters gathered in support of continued medical treatment for Charlie

After a four-month legal battle and tests showing that Charlie’s condition had deteriorated further, Connie and Chris accepted nothing more could be done for Charlie and they withdrew their objection on 24 July 2017.

Four days later he died, a week short of his first birthday.

 

Connie and Chris have used the £1.3 million they raised to set up the Charlie Gard Foundation, which offers support to families affected by mitochondrial disorders, including mediation, and funds medical research into possible new treatments.

They also want the law changed so that parents have a greater say over their child’s treatment. Currently a treatment has to be in the “best interest” of the child; they want this extended so that if a reputable doctor is offering a treatment, it can be given, so long as it doesn’t cause “significant harm”.

However, critics are concerned that “significant harm” could be even more difficult to prove in the courts than “best interest”.

The couple have not gone back to their previous jobs. Instead their work has brought together experts from across the medical, legal and ethical divide – an impressive feat in itself – to try to help parents like themselves negotiate these difficult life and death decisions.

They acknowledge not every child can be saved – and if a parent is refusing life-saving treatment for their child, then doctors’ wishes should prevail.

 

Great Ormond Street Hospital admits that the case was “hugely damaging”

However, they are convinced that by taking more heed of parents’ wishes it will help eliminate some of the conflict that can arise between medical professionals and parents in complex cases.

Barrister Daniel Sokol says one of the impacts of this case was damaging the reputation of the hospital. “Given how traumatic the Gard case was, you can imagine hospitals will think twice about entering into these bruising and protracted battles, even if the treatment is of dubious value to the child. This would clearly be undesirable,” he says.

Great Ormond Street admits the case was “hugely damaging” and had significant repercussions for the hospital. As a result of the case, the hospital had “difficult discussions with some donors” (although overall donations did not fall), and, it cost GOSH significant sums in legal fees. There have been the stress-related illnesses of staff; and the distress and regret around the handling of Charlie Gard’s case is still palpable inside GOSH.

But the hospital remains steadfast in its view that the treatment was not in Charlie’s best interest. Matthew Shaw, chief executive, says: “The hospital could have taken an easier pathway than the one it did. However, it believed this was the right thing to do, and we stand by that. We have been true to our thoughts around the management of children, and we have not bent our clinical decisions as a result of political or parental pressure. We haven’t lowered the bar.”

Cardinal Vincent Nichols, Archbishop of Westminster, also visited the hospital after the case to explain to staff that the Pope’s comment was not a criticism of the hospital and the people who work in it.

A teddy bear left by supporters of Charlie Gard’s family

Sir Mike Rake, who became chair of Great Ormond Street Hospital in November 2017, said: “There are lessons to be learned from this case about how we deal with a crisis of this magnitude both internally and externally.”

Mr Shaw added that no-one wanted to see strained relationships with families, or the stress that inevitably follows. “When the relationship between clinicians or nurses and parents breaks down, there is a real consequence to the staff. It can lead to a more strained and difficult relationship – and none of us wants to get into that downward spiral. It also causes stress and makes people double-question the decisions being made.”

But he also added: “Preserving life longer than is ideal – where the quality of life is so poor or because the child is openly suffering – is also morally distressing. In these circumstances, there is a real tension and stress, from the media, legally and politically, about the expectations of what the hospital should be doing.

“Spotting these circumstances is something that we could all do better, and we should reflect on that. With this case, it was the prolongation of the case and the uncertainty of what was next that made it so difficult.”

 

Not all the repercussions have been positive or constructive. According to Dr Hilary Cass, chair of Together for Short Lives, a UK charity for the 49,000 children living with life-limiting conditions and their families, after the Gard case there were instances where parents who chose palliative care for their sick child were accused by other parents of “not trying hard enough for their child”.

Gard and Yates just after they dropped their challenge to take Charlie to America

Parents of a child with disabilities become “expert parents” and this has become even more so with online forums, Facebook groups and Google. They often know more about their child’s condition than some of the more junior staff looking after them. They may ask doctors for a treatment they have been told about by other parents or read about online.

Sir Jonathan Montgomery, professor of healthcare law at University College London, says that is extremely hard to accept that doing nothing may be best.

“How do you stop the relentless pressure and temptation that doing something is better than doing nothing?’ he says. “We need processes that guard people against excessive enthusiasm and getting sucked into a tornado you can’t get out of.”

Greater use of mediation to prevent problems between doctors and parents escalating is increasingly being seen as the way to take the heat out of these disputes, and was recommended by the judge in the Gard case. This is supported by The Royal College of Paediatrics and Child Health which recently issued guidance on how to prevent conflicts between doctors and parents over the treatment of children.

Sarah Barclay, founder of the not-for-profit Medical Mediation Foundation, which trains healthcare professionals in how to recognise and manage conflict, says: “Mediation could be offered more often and earlier in cases involving disagreements about treatment. Too often it is offered too late. It’s an opportunity for parents and health professionals to explore their different views and perhaps to narrow the areas of disagreement between them. When it works, it is extraordinary to see the weight lifted off the shoulders of the parents and healthcare professionals.”

Difficult ethical decisions about withdrawing treatment from desperately sick children have always existed and will continue; it was the intersection of law, media, politics and healthcare which made Charlie’s case so extraordinary.

The huge media coverage allowed Charlie’s parents to raise £1.2m in a month

“From a medical perspective it appears this was a relatively straightforward case by the time it reached the courts,” says Sokol. “It was acknowledged by everyone that Charlie’s quality of life was dreadful and that even if Charlie had had the treatment, it would have had minimal effect on his profoundly damaged brain. But there were all these complicating factors that made it unique at the time.”

At the heart of this complex, global, multi-layered case, was a very simple human need – a desperate couple who wanted to be heard. It was also, for a few months in 2017, a painful example of populist politics and the modern media at work.

In the words of Hilary Cass, the chair of Together for Short Lives: “The anti-expert, post-truth era has a lot to answer for.”

Further reading