I felt awful about Charlie Gard’s case from the start. I know very little about paediatrics and these are just my thoughts as a person reading the paper, not some sort of medical opinion.
Today, the boy’s parents ended their legal fight for their ill baby that aimed to have him flown to the US for experimental treatment. Their reasoning was that it was too late for the process to work.
The poor boy was born with a rare inherited disease, a mitochondrial DNA depletion syndrome. The parents were sourcing funds to have Charlie treated in the US. The UK doctors looking after Charlie felt that it was in the baby’s best interest to have life support withdrawn. The courts sided with the doctors.
It seems that the doctors thought that the further suffering caused through unproven intervention won’t ultimately result in any improvement. I think it is safe to assume this has been incredibly difficult for them to begin with, then also given the media scrutiny and hate mail.
But the fact that the state was able to have the final word and endorse this child’s death against the parents’ wishes stills my blood.
Is there a moral difference between withdrawing treatment and active euthanasia? Euthanasia that isn’t legal in the UK? Euthanasia against the wishes of the family? Against the wishes of the parents?
Is life support different to all other treatments when it comes to euthanasia?
The courts’ judgement on this controversial case is equivalent to endorsing passive euthanasia: an act of omission that leads to death and this was against his parent’s wishes. Isn’t it a little brave new world?
Or is it madness to consider dragging a dying boy half around the globe for an experiment?
But isn’t it when the person is dying that the risks of all treatments are outweighed by the benefits?
The hospital states: “A world where only parents speak and decide for children is far from the world in which GOSH treats its patients”. [GOSH is Great Ormond Street Hospital in London]
How much autonomy did the parents have? Given the uber complex medical aspects of the case, could it be said that the parents lacked capacity to weigh in on this decision? That’s pretty brave new world too.
The parents are quoted as saying this: “This isn’t about us being selfish, keeping him alive because we can’t bear to let him go. It’s because if we did not fight for this chance, we will have to live with the ‘what if’ for ever”…
I wonder what the legacy of this case is going to be in practice.
UPD: Excellent, balanced article on the ethics of the Charlie Gard Case from the British Medical Journal