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Medicine Interview Hot Topics: Charlie Gard
Charlie Gard was a British baby who died in July 2017, aged 11 months. He suffered from an extremely rare neurodegenerative brain disease that the team at Great Ormond Street Hospital believed was untreatable. It caused brain damage, severe epilepsy, and a total inability to move. However, Charlie’s parents, Connie Yates and Chris Gard, petitioned the hospital to allow their child to travel to the USA for experimental treatment that they believed might allow their child at least some quality of life. The disagreement between parents and hospital led to the courts becoming involved, and a worldwide debate over the rights of parents, children, and over the right to life in general. This debate would ensnare figures from Trump to the Pope, and over time it became entirely removed from medical ethics and instead developed into a surreal furore fuelled by emotion and a lack of information.
The Main Points
Firstly, we must consider the difficulties inherent in trying to make a decision in the case. The courts were faced (as were the medical staff) with a difficult decision - to fly in the face of public opinion. Their mission was to reconcile the importance of pursuing Charlie Gard’s best interests with the difficulty of defining his best interests. What much of the public failed to realise was that the treatment proposed for Charlie Gard - treatment, rather than an effective cure for his condition - was untested and effectively certain to be unable to reverse the damage he had sustained already. Likewise, it was perhaps hard to grasp that Charlie Gard was in pain - constant pain - according to his medical team. Many would question their judgement, and perhaps rightfully so; pain is a subjective concept that is normally ranked by as basic a procedure as asking a patient to rank it his or herself, on a scale of one to ten.
One can quickly understand how a medical team insisting a baby was in pain, with no proof, and a purported treatment that was being refused, could combine to create press attention the likes of which GOSH has arguably never seen.
Perhaps Charlie’s parents’ wishes should have been given greater credence, or the medical team acted faster to try a novel therapy.
How We Should Move Forward
We should consider parents’ rights and role in decision-making for their children. In the vast majority of cases in the UK, parents and doctors are able to work together to reach a decision. However, if necessary then doctors are able to override the wishes of a parent who refuses beneficial treatment, or requests dangerous treatments. More work must be done to decide where the boundaries between benefit and harm lie, and where overriding parents becomes permissible. In the Charlie Gard case, the doctors at GOSH felt that Charlie was, ‘beyond experience,’ meaning that he could no longer feel. If one was to take this as correct, it would seem that an experimental treatment could have no harm - unless it was able to change his condition to some extent for the better, so that he could feel again. In such a complex situation, a lack of clarity on rules leads to difficulties for every party.
We should also consider introducing innovative and experimental treatments earlier in treatment phases. Notably, Charlie’s treatment was untested on patients with Charlie’s illness - but if never tested, then it may never be proven. We should lower the threshold for allowing innovative therapies for the most ill patients, who have exhausted other means. We should also ensure that delays are avoided in the commencement of these treatments, especially in a case, like Charlie’s, where every delay was actively harmful to his possible prognosis.
Looking at resources (or a lack thereof), it is the norm to assume that a treatment should not be provided if its excessive cost will deny other patients care. However, lack of funding was not an issue here, as Charlie Gard’s parents had already raised the necessary funding. Indeed, we could argue that resources that had been spent already (on research, academics and the other components of high-level tertiary healthcare that allow the creation of experimental treatments) were now being wasted, as no benefit was being obtained from their deployment. We should be sure to consider resources in a robust manner that looks at past spending as well as current cost, and ensure that benefit is reached from any spending.
Example Interview Questions
- What can you tell us about the Charlie Gard case?
- What do you think should have happened in the Charlie Gard Case?
- What ethical problems are raised in the Charlie Gard case?
- What does the Charlie Gard case tell us about the interplay between the media and healthcare?
- Would the Charlie Gard case have had a better resolution in a private healthcare system?
How to answer questions on Charlie Gard
Familiarise yourself with the complexity of the situation, and ensure that you show empathy to every party - Charlie Gard himself, his parents (who were acting only out of despair for their young child), his medical team (who were trying to provide the best care) and the courts and legal system that had to eventually settle the dispute. Try to comment on the difficulties of public opinion and the media becoming overly embroiled in a complex multi-layered ethical issue.
Interview Questions & Example Answers
What can you tell us about the Charlie Gard case?
Charlie Gard, born in 2016, was a British baby who died in July 2017, at the age of only 11 months. He suffered from an extremely rare neurodegenerative brain disease that the team at Great Ormond Street Hospital believed was untreatable and caused severe epilepsy and brain damage. Charlie’s parents, Connie Yates and Chris Gard, petitioned the hospital to allow their child to travel to the USA for experimental treatment. The disagreement between the hospital and Charlie’s parents led to a high-profile court case, and the involvement of media across the world.
What do you think should have happened in the Charlie Gard Case?
There should have been more work in place to establish the boundaries between benefit and harm in terms of experimental or novel treatments, and thus where the boundaries between doctors’ opinions and parents’ beliefs should lie. I believe that experimental treatments may have been introduced earlier and are often introduced or considered too late by the NHS. The threshold should have been lower for allowing innovative treatments for the most ill patients, who are unable to recover through any other means. As the funding had already been raised for Charlie’s treatment, I do believe that he ought to have received the treatment - as otherwise not only was his money raised not put to use, but the amount of investment in that treatment was also squandered. The doctors at GOSH believed that Charlie was ‘beyond feeling’ - which begs the question how the treatment could have damaged him or made him feel pain beyond what he may have been experiencing.
What ethical problems are raised in the Charlie Gard case?
The ethical problems revolved around trying to define what Charlie’s best interests may have been. Clearly, all parties wanted to act in his best interests - however, as the baby had no autonomy, no ability to consent to treatment or understand it, his parents instead had to make decisions for him. However, as it stands one cannot request medical treatment, only deny it - and whilst doctors will normally accept parents’ wishes, in certain situations they will not permit parents to request certain treatments for children. In this instance it was thought that continuing to treat Charlie might prolong his pain - going against the pillar of non-maleficence.
What does the Charlie Gard case tell us about the interplay between the media and healthcare?
It is rare for the media to become as involved in a healthcare story as they did in the case of Charlie Gard. It shows the potential for an emotive story - covering the right to life, parents’ rights, and the rights of a baby - to become worldwide news. It also shows us the worrying impact that sensationalist media might have, especially as world figures as bizarre as Donald Trump became involved in trying to move the baby to the US for treatment. The medical team were widely vilified, despite having made a difficult decision that they believed was the correct one, drawing on a huge amount of clinical experience and expertise. That their decision was therefore branded cruel by those with no knowledge of the workings of the case or the treatment in question shows the dangers of mainstream media becoming too involved in a case that revolves around medical ethics and medical knowledge.
Would the Charlie Gard case have had a better resolution in a private healthcare system?
This is difficult to answer - it seems possible that it may have done. Certainly, the NHS is too slow to approve experimental treatments, or leaves them off the table for long when considering how to treat a difficult case. One would assume that Charlie Gard, had he been American, would have had quicker access to this experimental treatment. This would be dependent on his parents still raising the money - which perhaps would be tougher in a different country with different media and rules. It would also of course then depend on whether the treatment did work - something that the specialists at GOSH fervently denied.