The tragic case of Charlie Gard, the British infant whose parents have just ended their legal fight to send him to the US for experimental treatment, has captured global attention. The case is significant for a number of reasons, both in the huge amount of publicity it has attracted, its progression through several courts, and the number of influential commentators who became involved.
Not only does the case highlight the challenges for parents, doctors and judges in making end-of-life decisions about critically impaired infants, it is unique in another respect. It highlights the changing role of the wider public in shaping how decisions about medical treatment are made.
Here are three factors from the Charlie Gard case that could influence future cases around the world.
1. Using social media to mobilise support
More than any case of this kind, advocates for Charlie Gard have been effective in mobilising support using social media and the internet. Early on, Charlie’s family set up a website (with merchandise available), as well as Twitter, Facebook and Instagram accounts to highlight how they disagreed with doctors about their son’s care. The social media campaign was further bolstered by hashtags #charliesarmy and #charliesfight to keep the topic trending.
The campaign, which brought together supporters under the banner of “Charlie’s Army”, attracted support from US President Donald Trump, and the Pope. The online campaign also raised awareness of Charlie’s rare genetic condition, mitochondrial DNA depletion syndrome, which in his case, resulted in muscle weakness and irreversible brain damage.
The social media campaign helped gather support for several protests about Charlie’s care. We’ve also seen criticisms of, and death threats against, Charlie’s treating doctors at Great Ormond Street Hospital in London, again fuelled by social media. Clearly, Charlie’s case has been played out both in the courts of law and the court of public opinion. The courts were asked to decide upon emotional and ethical issues. Yet, in this case, every aspect of Charlie’s life seems to have been played out through social media.
It’s time to ask ourselves whether matters that ultimately concern life and death, particularly of the most vulnerable and who cannot speak for themselves, be considered more privately. In this light, we may need to reflect on whether a social media campaign really has a place, not only now but in future cases.
In future cases where parents and doctors disagree on treatment decisions, will the Charlie Gard case form a template for how to rally public support? And could a similar approach influence future decisions about broader medical treatment, not just about end-of-life care?
2. Crowdfunding to pay for unauthorised treatment
In a novel move for cases of this kind, Charlie Gard’s supporters had raised £1.3 million via a GoFundMe crowdfunding initiative for him to be able to travel to the US for experimental treatment. His parents and a handful of medical experts believed nucleoside experimental therapy, while not a cure, could provide a small chance of improving his quality of life. This is a claim Charlie’s treating doctors rejected.
With finite health-care resources, there’s a chance other families of critically ill infants could think of crowdfunding to fund a treatment doctors or the courts consider not in the best interest of the child.
Yet crowdfunding for medical expenses is not as simple as setting up an account or website. There are processing fees, and other tax and legal implications to consider.
Beyond that, we need to ask ourselves what happens when crowdfunding money runs out and how people choose which campaign to donate to. We also need to consider not only how crowdfunding affects issues of privacy, but also how it affects the wider issues of fair and appropriate access to medical treatment.
3. Fuelling anti-establishment sentiment
End-of-life decisions for critically ill infants have traditionally been made privately, in collaboration between doctors and parents. Typically these decisions require an evaluation, among other factors, of the child’s best interests and quality of life. Parents generally tend to listen to and follow the advice of the medical professionals.
In this case, some may see the attempts of Charlie’s parents to overrule the courts, hospital and medical advice as a departure from the traditional paternalistic doctor-patient relationship (sometimes known as “doctor knows best”). Unlike many others in this situation, Charlie’s parents had rejected not only the advice of the treating medical team, but have also repeatedly rejected the decisions of the courts, who are assumed to be fulfilling an independent and objective role.
Future cases will demonstrate whether the Charlie Gard case can be regarded as an indicator of a trend away from the medico-legal establishment. But, as some have indicated, “doctor knows best” is shifting to “parent knows best”. Questions of “best interests” and “quality of life” are nuanced and difficult, but to Charlie’s vocal supporters in the court of public opinion, this case has been one of “us” and “them”.
We don’t yet know how this power shift will play out in future cases. But so far, public debates have been less about Charlie and his individual best interests, and more about the interests of others – be they political, “sticking it” to the establishment or being heard on social media. Perhaps, in the future, the courts may want to regain some control in end-of-life cases by enforcing suppression orders (limiting what’s made public about a case) to avoid such a media circus.
Where to from here?
It is likely that this will become a seminal case for some of the above reasons. The case will also be discussed to some degree in both Commonwealth and non-Commonwealth jurisdictions, as evidenced by US President Trump’s involvement.
In the meantime, it might be prudent to pause and reflect. Amid all the noise of clicks, hashtags, likes, tweets and protests, we need to go back to the essentials. At the heart of this frenzy is a very ill 11-month-old infant, who was unable to express his wishes. Yet there were millions who thought they could do just that.
Image: Supporters outside the now-abandoned case in the British High Court, rallying for infant Charlie Gard to travel to the US for experimental treatment. Peter Nicholls/Reuters