Charlie Gard: the Media and the Mob

Article authors: Tom Goodwin and Jack Skeggs


The case of Charlie Gard has captured widespread media attention, divided the opinions of doctors, lawyers and philosophers, and prompted heated debate around the world.  Charlie Gard passed away on July 28 this year, ending a months long legal battle between his parents and his doctors.

After being diagnosed with a rare and debilitating mitochondrial DNA syndrome, the treating team at London’s Great Ormond Street Hospital (GOSH), one of the world’s leading paediatric hospitals, determined that treatment should be ceased, and Charlie be allowed to die. His parents, in opposition to the staff at GOSH, fought for the right to transfer their son across the Atlantic so he could receive experimental treatment in the United States. With the parents and the hospital unable to agree on the best way forward, the courts were consulted.

What followed was an emotionally fuelled, public battle between Charlie’s parents and the treating team at GOSH.

2017-08-13 Charlie Gard Featured Photo

Timeline

August 4, 2016

  • Charlie Gard was born

September 2016

  • Charlie is taken to hospital after he began to lose weight, and diagnosed with the rare neurodegenerative disorder mitochondrial DNA depletion syndrome, which causes progressive muscle weakness and brain damage

October 2016

  • Charlie deteriorates and becomes dependent on mechanical ventilation in the intensive care unit

January 2017

  • Dr Michio Hirano, a doctor from the United States offers Charlie an experimental therapy. He has not seen Charlie, nor fully reviewed his case. The treatment he offers has never been used to treat humans or animals with Charlie’s condition
  • Charlie’s mother, sets up a GoFundMe page to pay for this treatment. In three months, they exceed their £3million goal
  • The treating team maintain that receiving this treatment is not in Charlie’s best interests and he should be allowed to die.

March 3, 2017

  • The Family Division of the High Court in London begins reviewing the case.

April 2017

  • After reviewing Charlie’s medical records, Dr Hirano concludes:
    • “I can understand the opinions that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy”
    • He also notes that if Charlie were in America, he would still treat him if that were the wishes of his parents

April 11, 2017

  • Mr Justice Francis rules that doctors at GOSH could cease providing life support treatment. Mr Justice Francis makes the following statements:
    • “There is unanimity among the experts from whom I have heard that nucleoside therapy cannot reverse structural brain damage
    • “If Charlie’s damaged brain function cannot be improved, as all seem to agree, then how can he be any better off than he is now, which is in a condition that his parents believe should not be sustained?

April 22, 2017

  • Supporters gather opposite Downing Street to light candles in support for the campaign to allow Charlie to travel to the U.S. More than 110,000 people sign a petition, with many more supporting Charlie’s parents through social media campaigns.

May 3, 2017

  • Charlie’s parents ask the Court of Appeal judges to consider the case.

May 25, 2017

  • Three judges at the Court of Appeal dismiss the couple’s appeal.

June 8, 2017 

  • Charlie’s parents lose another appeal in the Supreme Court

June 27, 2017

  • Judges from the European Court of Human Rights, after careful deliberation, refuse to intervene

July, 2017

  • Donald Trump and The Pope offer to intervene via social media

July 9, 2017 

  • Charlie’s parents join a demonstration outside GOSH, delivering a petition with over 350,000 signatures calling for doctors to allow Charlie to go to the U.S.

July 23, 2017 

  • Death threats are received by staff at GOSH, along with thousands of abusive messages towards doctors and nurses.

July 24, 2017

  • Charlie’s parents withdraw their request to challenge the original court order.

July 25, 2017 

  • Charlie’s mother returns to the High Court in an attempt to convince a judge to allow her son to die at home. GOSH opposes this plan, saying this poses a risk of a ‘distressing’ death. Mr Justice Francis says he believes Charlie only has two options, GOSH or a hospice

July 27, 2017

  • A judge orders Charlie’s transfer to a hospice, where his artificial ventilation will be removed after a “period” of time.

July 28, 2017

  • Charlie Gard passes away in a hospice.

There are many challenging ethical dilemmas presented by the case of Charlie Gard. There are many people we might consider to have acted irresponsibly, not least Dr Hirano, who offered treatment without proper evaluation of Charlie’s medical files. However, we wish to focus on two other clear trends of behaviour that perpetuated the cycle of suffering Charlie experienced.

Firstly, that the members of Charlie’s Army, the senders of death threats and those picketing the hospital had a due diligence to become properly informed  which they failed to meet. They assumed that they were in a better position to assess what was in Charlie’s best interests than the multitude of experts who had concluded otherwise.

Secondly, that the traditional media is largely responsible for the way this case played out, and were recklessly irresponsible. The extended suffering of an innocent child is largely their fault, and they should feel genuine shame for how they chose to cover the issue.

Before we discuss this, we must understand what the actual dispute between Charlie’s parents and the treating team were.

Medical Power of Attorney

A statement released by Great Ormond Street Hospital on 13 July 2017 highlighted that, despite their many disagreements, Charlie’s parents and the treating team at GOSH agreed that Charlie does “not [have] a quality of life”.

Their main disagreement however lay in how far parental rights extend:

Charlie’s parents fundamentally believe that they alone have the right to decide what treatment Charlie has and does not have… they believe that only they can and should speak for Charlie and they have said many times that they feel they have been stripped of their rights as parents.

The parents demanded the right to extend the period of suffering in the hope of achieving a better quality of life. The treating team came to the conclusion that the likelihood of benefit, could not justify extending Charlie’s sufferring. As such, GOSH, followed the recommendations set out by the General Medical Council’s Guidance document for 0-18 years, which concludes: “when treating children and young people, doctors must also consider parents and others close to them but their patient must be the doctor’s first concern”.

In defence of this position, the notion that parental rights should be absolute is clearly absurd. A parent has no right to sexually abuse their child, a parent has no right to neglect their child and  a parent has no right to choose to raise their child in such a way that clearly harms them. This is the basis of child abuse legislation. If one recognises the moral imperative of these protections against child abuse, they necessarily recognise that parental rights are limited, and should be limited by a compassionate society.

Charlie’s case is difficult because the intentions of the parents, and the outcomes they incur pull in different directions. Our moral intuitions are clouded in cases of medical decisions, because the intentions of the parents are generally good. However we must realise that good intent is small consolation to the individual who suffers the burdens of a medical decision. Whether you are denied a blood transfusion because your parents want you to die, or because they are Jehovah’s Witnesses and truly believe it is in your best interests, will not alter how deadly oxygen deprivation is to your tissue.

We are clearly coming down in support of the treating team. It is too easy to tell a compelling story of how the emotional burden and trying circumstances of Charlie’s condition would hinder the judgment of his parents. It is also clear from his parents’ statements that they fundamentally misunderstood the particulars of the case:

Had Charlie been given the treatment sooner, he would have had the potential to be a normal, healthy, little boy.

This was unfortunately, never a plausible outcome.

It could likewise be argued that every hospital and treating team will have their own set of biases, and as such may be similarly incapable of impartial decision making. It seems less likely that the entire treating team, presumably less emotionally tied to the case than Charlie’s parents, would have been equally susceptible to these effects. But, the possibility in and of itself was the reason the courts were consulted, and Charlie appointed a Cafcass Guardian: to “ensure that as much as is possible for a desperately unwell baby, Charlies own viewpoint is articulated and given weight”.

It is understandable that parents in this situation feel disempowered, but it must be emphasised that this process exists for the protection of the child, and to ensure, that the best outcome is reached. Each subsequent court hearing, which agreed with the treating team strengthened the case that Charlie was being harmed by being kept alive.

Media and Lay Involvement

Perhaps the most concerning part of this saga is the willingness of media and lay people to actively impact the outcome of this case.  Despite being widely characterised as Charlie’s parents against the treating team, the truth is that it was Charlie’s parents and an ill-informed mob on social media, against everyone who was actually involved in Charlie’s care.

Charlie’s parents’ wishes were at odds with the recommendations of the treating team at GOSH, three independent UK consultants, an independent medical team from Barcelona, the High Court, the Supreme Court and the European Court of Human Rights. At every stage of this unfortunate ordeal, every informed expert opinion came to the same conclusion: that treatment should be ceased, and Charlie be allowed to die in peace.

We make no claim to being better or worse informed than any other private citizen following this case. Our opinion that the treating team were right, could reasonably be said to be as (ill-)informed as someone who thought the opposite.

But we take issue with the kind of person who followed this case, read several articles on Facebook and a letter to the editor in their preferred newspaper, and subsequently decided that they knew better than all the experts and courts tasked specifically with examining this case and who spent months reviewing it.

It is quite remarkable to think that over 500,000 people decided that they were better placed to judge Charlie’s best interests than the multitude of medical professionals who reviewed this case, the High Court, the Supreme Court, and the European Court of Human Rights.

The true harms caused by this behaviour are perhaps best illustrated by the words of an anonymous member of Charlie’s medical team, who concluded the following in an article in the Guardian:

My colleagues and I worked our hardest, tried everything, fought so hard for this family but there was nowhere else to go. It was obvious to all those people who treated him.

We gave him drugs and fluids, we did everything that we could, even though we thought he should be allowed to slip away in his parents’ arms, peacefully, loved.

We didn’t do this for Charlie. We didn’t even do it for his mum and dad.

Recently, we did this for Donald Trump, the Pope and Boris Johnson, who suddenly knew more about mitochondrial diseases than our expert consultants.

And we did it for the keyboard warriors who thought it was OK to write about the “evil” medical staff at Great Ormond Street, even though we were still there next to Charlie, caring for him as best we could, as we always had.  

We did it with every fibre of our being telling us that it was wrong, we should stop.  

But we couldn’t.

The case of Charlie Guard is truly tragic. Both because it is an archetypal example of a child, innocent and blameless, having his one chance at life snatched away before it even started. And also because here was a case where both parties were genuinely motivated by altruistic concern, and yet we still could not avoid disagreement, conflict and pain.

There are many concerning aspects of Charlie’s story, but the media’s role in promoting emotionally driven, uninformed public discourse needs to be questioned. At all stages of this saga, expert opinions aligned. When immensely complicated healthcare decisions become informed by the opinions of Donald Trump and the Pope, it is clear the media has overstepped its mark.

The views and opinions expressed in this article are those of the author and do not necessarily represent those of the Doctus Project.