One feels deep sympathy for the parents of young Charlie Gard, whose case has been reported in this magazine. Mr Justice Francis has ruled in the High Court that it is in the best interests of the eight-month-old child to remove life support, contrary to his parents’ wishes.
Charlie has mitochondrial depletion syndrome which causes progressive muscle weakness. From now on he will receive palliative care only.
On initial reading of the case, it seems that the court has condemned Charlie to death. But the decision in fact may be the right one to make. It is absolutely true, of course, that we should do our best to preserve life, but not at any cost. There comes a time in all cases where doctors can, and indeed must, tell patients that there is nothing further that medical science can do for them. For there may well come a time when further medical intervention is either useless or counter-productive, and nature must be allowed to take its course.
However, while it may well be the case that families are ready to accept the sad decision that palliative care only is to be offered from now on in the case of a beloved grandparent in her 90s, it is quite understandable that the parents of a very young child may not be willing to accept a similar medical judgment. That presumably explains why this case has ended up in court. Charlie’s doctors and Charlie’s parents found themselves in profound disagreement, of the sort that could only be resolved in the High Court.
This highlights another problem in medical ethics, and that is the way doctors and patients (or in this case a patient’s parents) often find great difficulty in communication. The medical professionals really do need to take time to explain to patients just what their medical situation is, and help them to understand the options that lie ahead of them.
This does happen, but I have heard of numerous cases where doctors have taken little trouble to explain matters to relatives, or, worse, tried to force patients to accept decisions in the making of which they had no or little part. That is simply unacceptable.
Medical procedures must be in the best interests of the patient, and what is in the best interest of the patient needs to be made transparent. It is simply not enough for medical professionals to claim they know best (they may indeed know best); they must also persuade all parties of the rightness of the course of action. This clearly failed to happen in the case of Charlie Gard.
There are many things wrong with our NHS, some of which are due to a lack of funding. But in this case, there has clearly been a failure to connect, and that is an ethical failure, and ethical behaviour costs you nothing apart from time and consideration. One feels for Charlie Gard’s parents who are to lose their son; but one also feels for them having to go to court in what they think to be the best interests of their son. If the doctors had approached this differently, perhaps they would have been spared that.
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