Charlie Gard’s case hit the front pages of new outlets in the UK and around the world in 2017. It was an emotional dispute of best interests, posing many questions about ethics and shaping the content of future medical ethics coursebooks.
It’s unlikely that you’ll be asked specific questions about the case. However, it’s worth diving into it, as it’s a) a captivating story and one important for the history of medical ethics and b) you can bring it up as an example when discussing various medical and ethical topics in your interview to demonstrate insight and support your arguments.
Firstly, a bit of background context:
Charlie Gard was a boy born in 2016 with a rare genetic disorder called mitochondrial DNA depletion syndrome (MDDS). The disease caused Charlie’s brain and muscles to progressively deteriorate and he soon ended up in Great Ormond Street Hospital (GOSH), where he was diagnosed with MDDS. GOSH is a world-renowned children's hospital in central London.
Unfortunately, there was (and is) no proven treatment for Charlie’s disease and the prognosis offered by doctors at GOSH was Charlie doesn’t have much time to live. His condition was deteriorating significantly every day, causing multiple-organ failure and ultimately required Charlie to be plugged onto various life-sustaining equipment.
After consulting various specialists from around the world, the GOSH staff caring for Charlie told the parents that artificially prolonging his life through machines causes Charlie unnecessary suffering and that sustaining his life is no longer in Charlie’s best interests.
The entire journey, from diagnosis and bleak prognosis to the lack of treatment and proposition to withdraw life support has been devastating to Charlie’s parents. It’s unimaginable what they were going through for anyone else. In an absolute lack of home, after the case got some media attention, hope was offered by Dr Michio Hirano, an acclaimed neurologist from the US.
He told the parents he was working on an experimental therapy, nucleoside bypass therapy, that could have a chance to help Charlie. However, his claims weren’t backed by any scientific data; the therapy was never tested on humans before, and only on a condition similar to Charlie’s.
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Seeing even the slightest chance of success offered by Dr Hirano, Charlie’s parents disagreed with the decision to withdraw Charlie’s life support, as proposed by staff at GOSH. This disagreement between the parents (who have the legal right to make decisions over their child’s care, as Charlie lacked autonomy himself) and the doctors treating Charlie led to the involvement of a court, which is common practice in such situations. Based on the available evidence, arguments of both parties and historical, similar cases the court then rules what should be done.
The court agreed with the decision of the NHS staff to withdraw Charlie’s life support. Unhappy with the court’s decision, Charlie’s parents decided to ask the Court of Appeal to consider the case. In the meantime, the parents raised £1.3mil through crowdfunding for Charlie’s treatment in the US. However, after analysing the case Court of Appeal, then the Supreme Court and the European Court of Human Rights to which the parents later turned, all agreed with former rulings.
Ultimately, on the 4th of July 2017, Mr Justice Francis, who was the judge leading the case, ruled (in a very empathetic and affectionate way, you can read the entire report under Useful Resources) that “Charlie’s life cannot be improved and that the only remaining course is for him to be given palliative care and to permit him to die with dignity”. Three weeks later, Charlie passed away.
Before you start reading about the ethical aspects of the case, we’d recommend you to head to the Ethics section of the guide and read more about the 4 Pillars of Medical Ethics (if you haven’t already).
🏄♂️ Autonomy: Patients (in this case patient’s parents) have the right to choose between the treatments offered by doctors, seek another opinion or deny treatment. Patients don’t have the right to demand treatment (At least within a universal, public healthcare system like the NHS. They may demand specific treatment in a private setting, provided they can afford it). However, the parent’s autonomy is not absolute: If their decision isn’t in line with the patient’s best interest and overall well-being, doctors treating the child may intervene. If after discussions the child’s parents still demand action that isn’t in the patient’s best interests, doctors can appeal to a court, which has a final say and rules what should be done. As was the case in Charlie Gard’s instance.
🌟 Beneficence: One side in the whole debate claimed that even the smallest chance of success (offered by nucleoside bypass therapy) is better than none. That giving up on the treatment would mean giving up on the potential good that it can do. However, this has to be juxtaposed with the harm done to the patient while he was on life support. According to the specialist staff at GOSH, every extra day Charlie was on life support prolonged his suffering, causing him harm and discomfort. Hence, flying over to the US and going through the treatment would mean prolonging his state of harm, potentially unnecessarily.
👹 Non-maleficence: So Charlie needed life support to live, yet it was causing him pain and discomfort. The longer he was plugged into those machines, the more ‘harm’ he experienced and flying over to the US and going through the treatment would mean prolonging this state of harm. Furthermore, the therapy proposed by doctor Hirano also involved many risks and could cause further harm to Charlie. Withdrawing life support would cease Charlie’s suffering.
This, however, should be juxtaposed with the view that death (by switching off life support) could also be viewed as a form of harm. So the ultimate question was: Is it right to extend Charlie’s suffering with a very vague hope that the treatment might help him?
This poses further questions, like how much would the treatment help and how much would it last, aspect that could not be measured or quantified. This is what makes the entire case so difficult; operating on very vague predictions rather than certainties. But it’s also an important lesson for aspiring medics like yourself: By the nature of the job, as a doctor, you’ll have to make difficult decisions under uncertain conditions and based on conflicting opinions. And moreover, take responsibility for those decisions, which will impact the life of another human being.
While the case was unimaginably difficult for Charlie’s parents, the health care staff treating Charlie were also emotionally affected by the case. As a doctor, you want to do whatever is best for the patient, and if it’s not possible to do because the case requires court rulings and constant disputes, it can become really frustrating that you cannot do what you can to help. Furthermore, due to large media coverage of the case and large involvement of the public, some of the staff experienced abuse and threats.
If not for the media and the internet Charlie’s parents wouldn’t be able to raise the funds for treatment, receive so much support and fight for their stance. Moreover, the involvement of the public meant the impact of the case on future, similar decisions will be greater. On the other hand, if not for the media coverage and the internet, the parents could have not discovered Dr Hirano’s treatment, which in hindsight, could have saved Charlie, his parents significant amount of suffering and a lot of nerves for the GOSH staff.
When to bring up this case study in your medicine interviews? Think of all the lessons it teaches you about the nature of a doctor’s work, such as that ethical dilemmas are an integral and immensely challenging part of a doctor’s work. Furthermore, other aspects of the case are also important, such as the impact of media, the ethical clash between beneficence and non-maleficence, how much say should parent’s have over the care of their child or how withdrawing life support (when deemed no longer in patient’s best interests) differs from euthanasia.
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If you’d like to wrap your head around the topic and learn more about Charlie Gard’s case, check some of the resources we’ve collected for you below:
Charlie Gard - Medical Ethics and Law - very informative and well-researched video by Ali Abdaal explaining the case in more detail (28min.)
GOSH’S POSITION STATEMENT | HEARING ON 24 JULY 2017 - official statement written by GOSH on the case. It shows how invested the hospital was in the treatment and how emotional the case was.
Charlie Gard: An Ethical Analysis of a Legal Non-Problem - more in-depth commentary on the legal and ethical side by Iain Brassington for the Journal of Medical Ethics (BMJ).
Charlie Gard: A case that changed everything? - commentary on the case by Nick Triggle for the BBC
Additionally, if you’d like to read more about useful case studies that can benefit you for your medicine interviews, sign up for a free account at medfully.co.uk.