How a fight for Charlie Gard became a fight against the state
BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j3675 (Published 01 August 2017) Cite this as: BMJ 2017;358:j3675
“Manslaughter”—the Daily Mail’s lead story was on a different subject but its headline was juxtaposed with an old photograph showing Charlie Gard at 2 weeks of age. “As judge rules Charlie must die in hospice, parents release new picture and say, ‘We’ve been denied our final wish.’”
Later that day the critically ill baby, who had been at Great Ormond Street Hospital in London for the past eight months, died after doctors withdrew mechanical ventilation and tube feeding.
Months of conflict between Charlie’s parents and his doctors, played out in a series of high profile court cases, defined his brief but highly medicalised and uniquely publicised life.
Best interests
The doctors treating Charlie thought that his condition was in its final stage and that they were not serving his best interests by keeping him alive. The parents’ desperation, and a chimeric hope given by a specialist offering experimental nucleoside treatment in the United States, was rocket fuel for the tabloids. They described the potential intervention as “pioneering” and “life saving”—despite it having never been tried in a patient with Charlie’s form of the condition.
Millions of people followed Charlie’s plight—there was international media coverage, thousands of social media supporters calling themselves “Charlie’s army,” petitions with thousands of signatories, and interjections from Theresa May, the pope, and Donald Trump.
As far right radio hosts and celebrity columnists shared their thoughts, Charlie became the topic of intense scrutiny and comment—on both sides of the Atlantic.
In the US, where Republicans have been trying to keep their promise of scrapping the Affordable Care Act, senator Ted Cruz tweeted three weeks ago, “No hospital, no gov’t has the right to deny parents their chance for a medical miracle. I stand with #CharlieGard,” with no sense of irony.
Parents versus the state
A columnist in the National Review explained how the “precedent established by Charlie Gard’s case will metastasize, as similar decisions have. It will be made to apply to children with more familiar illnesses and better prognoses; it will be used to dismiss the input of parents whose values and priorities when it comes to medical care and end-of-life issues do not align with those of the state; it may be used simply to clear beds for ‘worthier’ patients in a healthcare system with very limited resources. This, presumably, will be ‘compassionate,’ too.”1
“The Charlie Gard case threatens all parents,” said USA Today, arguing that “the state is clearly overstepping its bounds, trespassing into the realm of parental authority and family life.”2
The Wall Street Journal concluded in a leader that Charlie’s parents had been prevented from seeking treatment abroad “because of a system that elevated a judge’s opinion about what was best for Charlie over loving parents. Few should be surprised, because the brutal reality is that when the state is responsible for nearly all health spending it inevitably takes responsibility for life and death decisions too.”3
Charles Krauthammer, a right wing commentator, may have summed up the thoughts of many mainstream commentators in last week’s Washington Post, explaining why he thinks the parents are wrong but would still let them take Charlie abroad because “parents are simply more likely than anyone else to act in the best interest of the child.”4
This is the desperately sad story of a little boy who would have been one year old on 4 August. After an apparently normal birth and first few weeks of life, he was admitted to hospital at eight weeks with encephalomyopathic mitochondrial DNA depletion syndrome, a rare disease caused by mutations in gene RRM2B inherited from both parents. He had severe brain damage and could not move his limbs or breathe unaided.
Also desperately sad is how Charlie’s situation was used in political propaganda—by religious fundamentalists who want lives prolonged at any cost, neoliberalists and opponents of Obamacare, and populists given the opportunity of an angry public.
Emotion turns menacing
Criticism of Charlie’s care—sometimes ignorant, sometimes false—spiralled. Some encouraged hope where there was almost certainly none; some cast doubt on doctors’ expertise and integrity.
High emotion turned menacing as some Great Ormond Street staff and patients received abuse and death threats.
“I have never witnessed such concentrated ignorance, arrogance, stupidity, and unthinking cruelty as has been displayed by the American political right over the tragic case of Charlie Gard,” fumed the rightwing pundit Melanie Phillips. “Here’s the really wicked thing about all this . . . This campaign led the parents to believe that such pressure could change the court’s mind. And so the parents were reinforced in their refusal to face reality.”5
Charlie’s parents, Connie Yates and Chris Gard, forwent their family’s privacy to campaign for support and to raise funds to treat Charlie in the US.
And supporters came—with hashtags like #istandwithcharliegard, #charliesarmy, and #charliesfight—signing up to Facebook (www.facebook.com/Charliegardsfight; 142 000 followers), Instagram (www.instagram.com/charliesfight; 109 000 followers), and Twitter (twitter.com/Fight4Charlie; 5320 followers).
The family’s website, www.charliesfight.org, invited support in several ways and featured an online shop selling “lovely items made by Charlie’s supporters,” such as wristbands, tote bags, and key fobs. It says that they have had more than 83 000 donations and raised £1 343 220 (€1.5m; $1.8m) (www.gofundme.com/please-help-to-save-charlies-life).
Family advisers
The publicity brought to the family’s aid an assortment of advisers and media publicists, including Catherine Glenn Foster, president of Americans United for Life, “America’s first national pro-life organisation,” and the controversial US evangelist Patrick Mahoney, who reported on Facebook that he was briefing the White House on Charlie’s case.
Many of the Mail’s stories covering Charlie Gard were written by Alison Smith-Squire, although she is not a staff or independent journalist and was also acting as the family’s public relations spokesperson, a detail the Mail’s stories made no mention of.6 The family say that another spokesperson, Alasdair Seton-Marsden, a UK Independence Party candidate for Chelsea and Fulham in the 2017 general election, didn’t always act with their permission.
Following support from the pope, Donald Trump, and his vice president Mike Pence, a loose consortium of anti-abortion groups—March for Life, the Susan B Anthony List, Concerned Women of America, and Americans United for Life—launched a campaign to “Save Charlie Gard” at a press conference in Washington, DC on 6 July, emphasising the importance of engagement on social media.
Time, the world’s largest circulation news magazine, reported that this campaign had had “major impact”: court hearings to consider new evidence may not have occurred without pressure from these US social conservatives, Gawain Towler, another of the family’s spokespeople, told Time.7
And Twitter has been awash with comments that Charlie had been “held hostage” by the hospital, blaming his fate on the “death panels” inherent in “socialised medicine” and “single payer systems.”
Even many moderate US commentators were incredulous that parents with funds were not able to act autonomously for their child, perhaps reflecting cultural differences and a US legal system that is much more deferential to parents. Few seemed also to recognise that unproved treatment was capable of causing Charlie harm.
Classic populism
Ranjana Das, a media academic at the University of Surrey, wrote that public discourse on the case had employed “some classic markers of populism . . . These have ranged from genuine anguish and expressions of sorrow, to the use of terminology from the Third Reich to characterise doctors, lawyers, and clinicians.”8
“Underlying populist rhetoric in the UK is an ongoing climate of critical opinion against the public services including the National Health Service, legitimised in popular discourse, such as in the tabloid press, as failings on the part of socialised healthcare systems,” Das concludes.
What bearing could all this have on other cases of severely ill children, and on the doctor-patient relationship in general? Catherine Glenn Foster, president of Americans United for Life, said in a statement, “We will continue to fight for the dignity of every human life and for every parent to make life affirming, evidence based choices for their children.”9
No winners
In his judgment on 24 July, Justice Nicholas Francis said, “A lot of things have been said . . . by those who know almost nothing about this case but who feel entitled to express opinions.
“The world of social media doubtless has 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.”
Charlie’s death came nearly five months after his doctors decided that further treatment would be futile for the baby and applied to the High Court to stop life support.
“There are no winners,” the pundits and the social media accounts echo. If so it is not for lack of trying: consider the newspapers sold and the religious and political campaigns that have found new support.