Our hearts break when we see poor little Charlie Gard lying in a hospital bed in London on a ventilator because he can’t breathe for himself, and hear the desperation of his parents as they fight for the right to do what they think is best for him. Our one hope is that the system can change because of Charlie.
The current system makes a complete mockery of the idea of ‘parental consent’. Disagreements between hospitals and parents over how to treat their sick children have always happened, and they will continue to happen. But the worst possible way to try to resolve them is to do what we do now – take the matter to court, where inevitably the decision will favour the medical establishment. Parents who are coping with the nightmare of a seriously sick child such as Charlie should not have to hire lawyers to defend what are supposed to be their parental rights. We need to set up some other body where parents, doctors and hospital administrators if necessary can state their views in a plain straightforward manner and without the need for legal representation. Then, if things cannot be agreed between all parties involved, the default position should be in favour of the parents unless it can be proved that they are abusive.
To return to the case of Charlie, we find it odd that in spite of one medical expert claiming that it is ‘likely’ that he is suffering, no published pictures of him show him to be in pain or discomfort. Of course this may be out of respect for him and also so as not to offend public sensibility, and we can appreciate that, but the obvious question to ask is that, if, lying in that specialist hospital, he is indeed suffering, then why? Why are they, with all their expertise, not treating him in such a way as to ensure that he is not suffering?
As writers of this blog we of course do not know if he is suffering or not, but we certainly do not accept at face value the claim that he is. Therefore, we would like to ask one question of the experts who make that claim: would you stake your career on your testimony? In other words, if it can be proved at a later point that he was not suffering, would you be willing to resign from the medical profession? If the answer came back yes then we would have more faith in what they were saying.
However, we are fairly certain that in this case no expert would be willing to stake their career on this matter. One reason is that Charlie has such a rare disease. We wonder if anyone in court asked the medical experts present if they had ever examined another baby with this condition before. Most doctors, even those who care only for infants, will never see a baby with Charlie’s condition in their working lives.
Let’s be really plain about this. For a so-called expert to say that they are sure is not good enough in this case. Even for them to say they are really sure is not good enough. They need to have absolute certainty based on previous experience, which in this case is not possible.
So what we are left with is a very ugly suspicion: when children get sick and are taken to hospital, and if it sadly turns out that they will not recover, then the hospital may see them as a bed blocker and act accordingly, with all of the resources – including legal resources – at its disposal.
In our opinion, as Charlie can receive no further treatment where he is, this whole situation could be resolved by allowing his parents to take him where they want to for treatment. Then, even if that treatment is not successful, at least they will have the small consolation that they had tried everything they could for their son. No institution, no state, should have the right to deny them that.