One child, an incurable disease, an uncertain cure and a vocal US President. And somewhere in it all, a social battle that has divided the world in one way but united in another. A bitter fight, with Doctors labelled as ‘Nazis’, ‘Death Panels’ and religion, politics, and philosophy all invoked over a case only half understood. The result may be tragic, but at the same time inspirational. The legacy of Charlie Gard may be a pure passion that could make a better future.
Before we start, I’ll make my thoughts clear. I will abide by the ruling of the UK courts and expertise of Charlie’s Physicians. I believe that life is sacred, but sometimes short and that a peaceful death is better than drawn out suffering. I believe in patient rights, the role of family and listening to the views of those compassionate. I also believe that the case is incredibly complex, but can be understood by a set of rules, applied smartly and with care. And most of all, I believe in the passion of those taking the time to speak out for this child.
At this moment the case may reach another appeal, with ‘new evidence’ under consideration. I hope this changes things, but for now, let’s consider what we know.
Charlie and MDS: A Sad Story
Charlie Gard is an infant subject to a terminal illness, Mitochondrial Depletion Syndrome (MDS.) It is a rare genetic disease where the mitochondria, the powerhouses of our cells, are few. Patients tend to die very young, exhausted by a body that cannot keep up. Although a cure is under investigation, as of yet this rare condition has one end, death. For Charlie, and his parents, this terrible condition has only led one way.
With the potential promise of experimental treatment in the US, Charlie’s parents did what any of us would do. They asked to fly Charlie abroad and try. But the doctors, after discussion with US doctors, said no. The treatment is experimental, will not cure Charlie and the time taken would cause him nothing but suffering. Death was inevitable, and the best action was to ease his suffering. A court challenge later, and the decision remains.
A sad story, but not unusual. Medicine has limits.
Making any decision within medicine requires a sound understanding of science, balance and the protection of the patient. Our understanding of Medicine is limited by training, experience, and crucially, what research can tell us. We are still in our infancy, only ankle deep in the ocean of what we may one day know. What we may one day cure. When our limits are tested, we turn to morality.
Doctors are bound by four core duties, ones we swear too at Graduation. We must always act in the patient’s best interests, avoid treatment that will cause overall harm, respect their judgment (autonomy) and ensure that care is distributed fairly. In the case of Charlie, these four tenants are of utmost importance. But before we discuss all this, let’s summarize the case simply.
Charlie is a terminal phase of an incurable illness. There, as of yet, is no cure. This has been agreed by his doctors and those researching in the US. Transport abroad would be fruitless. Management of his condition would be limited to symptom control (something we do well.) The parents disagree (which is their right.) Large numbers of people across the world disagree. The US president disagrees. Charlie cannot comment or express his wishes. The argument has moved beyond the facts and into superstition, morality and, in my opinion, political point scoring.
To act in Charlies best interests, as claimed by his doctors, would be to avoid experimental treatment and manage his passing compassionately. They argue that subjecting him to a treatment that has no evidence of cure would be painful, drawn out and ultimately cause more harm than good. Charlie’s autonomy is nonexistent, and the decision of his parents has been judged not to be in his best interests. This is difficult, but not uncommon. With all the heart in the world, sometimes our dreams and hopes are just that. By their own duties, the doctors have upheld what would be considered the best course of action.
‘Nazi Doctors’ and ‘EU death panels’ – Why Fiction has created War.
As a result of the case reaching national news, people have taken sides. Many have accused Charlie’s doctors of denying him a ‘chance of life’, some of ‘state murder’, ‘putting Charlie to death’ and ‘ignoring his parents’. Others have accused the doctors of ‘arrogance’, I myself, in a discussion of the case, have been called a ‘sick fuck’ and people have expressed a wish for me to contract a terminal illness myself. The worst has been comparisons made with ‘Nazis and Death Panels’. Simply put, some of those who ‘fight for Charlie’ have created a fictional enemy beyond the facts. They hope for a cure that isn’t there, and woe betides anyone who questions their crusade.
And to worsen this, Donald Trump has waded in.
Trump, ever a bastion of impeccable scientific repute, has offered (with the Pope in tow apparently), to fly Charlie to the US for a trial of treatment. As is clear by the research, and what has been discussed above, this will not offer a cure, only suffering. As a result of this offer, Trump supporters have suddenly found an enemy of UK doctors, where ‘Make America Great Again’ and ‘EU death panels’ are finding themselves bedmates in the same tweet. Advocacy groups, such as ‘Charlies Army’ have sprung up online. The case has moved from the private story of a family to a national battleground.
A battleground with facts are ignored. In my opinion, Donald Trump has knowingly made a false promise, using the pope as religious leverage, to score points at the expense of a dying child and their family. I have been attacked for this opinion, but I will defend it. The facts are there, for all to see. Even Trump. There is a reason that other politicians have not weighed in, they have listened to the science. They have shown respect. Trump seems capable of neither. So he has either misunderstood the case and innocently made an empty promise, or worse.
The argument has been reduced to one simple idea. ‘The Doctors are putting the child to death, and they are wrong’. As we have seen above, the case is far more complex. Nature has robbed Charlie of a future, and doctors are doing the best they can to ease his suffering.
How Charlies Legacy may burn brightly.
With all the lies, abuse and anger online it may be hard to find a positive. But I think I have found one. Regardless of their specific belief, thousands have fought for the wellbeing of a child they have never met. They have argued tooth and nail simply to give the young child a chance. Even if the chance isn’t there, the case has united both sides of the table around a common theme. Let us do good by those who need it. Let us help this child, who we have never met. I have, never in my life, seen such passion, such selflessness, and such advocacy. I am proud to have been insulted, harassed and threatened because I know that in the end, these people truly care.
Charlie is unlikely to live. But his death (bless him) will raise not just awareness of MDS, but also the limitations of medicine, the importance of compassion and the power of people. If we could take this compassion, this anger, this advocacy, and put it towards finding a cure, funding research and deepening our understanding, Charlie may be the catalyst for a future much greater. Cases like these may become an epitaph to the world where misunderstanding has been replaced by science, compassion, and unity over a shared cause.
A world Charlie would be proud of.
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Any opinions above are the author’s alone and may not represent those of his/her affiliations. Any comment is based on the best available evidence at the time of writing. All data is based on externally validated studies unless expressed otherwise. Novel data is representative of the sample surveyed. An online recommendation is no substitute for seeing your own doctor and should not be taken as medical advice.