The 51-week life of Charlie Gard: Lessons from the news coverage

Imagine a story with the following characters: doctors, lawyers, protestors, judges, paparazzi … and a President, a Prime Minister, and the Pope.

Imagine the plot weaves through hospitals and court rooms, spills into the streets of countries around the world, and gathers a viral momentum that becomes irresistible to politicos, special interest groups, and — of course — journalists.

And at the center of it all is infant Charlie Gard — dying of a rare and incurable disease — and his desperate parents (Connie Yates and Chris Gard).

The life of Charlie Gard (which some encapsulated as a ‘timeline’) lasted a week short of a year, and ended last week. Without going into the complex and disturbing details — well documented in this insightful article by Dan Bilefsky of the New York Times — the short life of Charlie Gard was one his parents wanted to extend, the doctors considered irretrievable, and the court of public opinion commandeered. 

And it was when I saw this quote … “the court of public opinion is surely the worst possible place for ethically complex decisions” … that I decided to contact its author, Dr. Dominic Wilkinson.

Wilkinson is a professor of neonatology and medical ethics at Oxford University. His quote came from an editorial published today in The BMJ in which he reflects on how — what could be labeled a fiasco or perfect storm — could have been handled better.

But as I spoke with Wilkinson it became clear that his insights carried important lessons for journalists and readers alike. We both agreed it seemed inevitable that cases like Charlie’s would again find their way into the court of public opinion and the mainstream media.

Here are those lessons, as well as some advice to journalists who might cover a similar situation in the future.

“The media can’t present two sides if only one side is coming to them”

“The only people the media had access to in this case were the people who didn’t have the clinical details,” says Wilkinson. He adds:

“The family, and those in support of them, had significant media exposure to support their very emotional case in arguing for more therapy. But in most of the media coverage you did not hear the contrary side. That’s because the other side — the health professionals directly involved with Charlie’s case — could not speak out publicly because of their obligation to patient privacy.”

Wilkinson argues this created a “structurally unbalanced” coverage that left many readers with a better understanding of the parents’ perspective, but not understanding why the doctors argued against prolonging Charlie’s life. 

An extreme example of this was a recent National Review editorial which posited the case exemplified the “devaluation” of the parents wishes, with almost no mention of the complex medical and ethical considerations the attending physicians had to balance. Likewise, this summary of the case published by The Telegraph highlights the legal stance of the hospital rather than explaining the medical decisions made by the doctors.

In other words, the voices of those who knew the clinical details best were not heard. Where does this leave journalists? Looking for opinions from doctors not involved with the case. And this brings up lesson two.

When the media seek second opinions for medical stories

“Most physicians are cautious about giving opinions on partial or incomplete information,” says Wilkinson, who says he sympathizes with journalists who turned elsewhere for medical perspective. “But there needs to be a note of caution about the salience of these outside perspectives based on their limited access to the details of the case.” He adds:

There were other health professionals who were clearly sympathetic to the notion that further treatment in this case could have done more harm than good. But they were reluctant to voice their opinions because they not only lacked details of the case, but also voicing their views might have subjected them to unpleasant attention.”

It might be argued the court of public opinion was beginning to sympathize more with the intensely emotional plight of the parents than with the clinical quandary of the attending doctors.

A perfect (viral) storm

Bioethicists quoted in the New York Times suggested the case may prove to be a cautionary tale of how such multifaceted controversies “can spiral out of control in the social media age.”

Dominic Wilkinson was one of those bioethicists.

“I think the nature of viral coverage is that certain kinds of issues attract very rapid coverage,” says Wilkinson, “and Charlie’s case touched enough hot currents — like pro-life, libertarianism, and single-payer health systems — that it was a perfect medium for that kind of coverage. And then there is that social media pressure to condense analysis into shorter and shorter sound bites or even tweets.”

Advice for journalists

We will likely see more cases like Charlie’s. Cases in which those who know the evidence best are obliged not to share it. And many who don’t know the evidence may feel compelled to capitalize on it. I asked Wilkinson how he thinks journalists should handle such situations.

“The challenge is finding sources with the relevant expertise who will provide insight and perspective, but are cautious and measured. And even though their views may be harder to encapsulate in quote form — especially given today’s time pressures and word limits — it is these people, who can engage with the subtleties and complexities of such cases, who the media need to find.

These cases are medically and ethically complex. They are not amenable to a simple reduction of good/bad or right/wrong. They’re messy. So the challenge is to not over-simplify them. Journalists need to recognize this nuance and find sources that appreciate it.”

This is an issue that doesn’t get talked about nearly enough. Taking the time to identify and connect with such sources is a major challenge for news rooms. It’s something we encounter quite a bit in our analyses of health care stories. This list of industry-independent expert sources is a good place for journalists to begin their search.

Charlie Gard would have turned one tomorrow.

That his life was brief is tragic enough. That his death played out in the court of public opinion is another kind of tragedy, indeed.