Charlie Gard should have been allowed to go to US for experimental treatment back in April (or better January when it was first considered) because there was some possibility of him having a life worth living after treatment. That possibility may have been slim, but it does not appear (to me) to have been zero. The rational strategy was to give a trial of treatment, say 3 months, and agree with family to withdraw ventilation if there was no improvement. If this had been done, we would now have some information on whether there is any prospect of improvement..
The critical quote in the judgment of Justice Francis in the High Court back in April is from the independent US expert in nucleoside replacement therapy, Dr I:
“He said that he thought that the treatment, if administered, was unlikely to be of any benefit to Charlie’s brain. He described the probability as low, but not zero.”
Dr I said that if Charlie were his patient, he would push for a trial of treatment.
Is 3 months of suffering associated with intensive care worth taking for, say, a 1/10 000 of improvement? This is a value judgement about which there is reasonable disagreement. Sadly, Charlie has experienced the pains and discomforts of intensive care for more than six months, now without any treatment with any prospect of improving his condition.
The state should not have to pay for expensive experimental treatment with low prospect of success but Charlie’s parents have raised the funds. Charlie should have been allowed to go straight away (and saved hundreds of thousands of pounds of scarce British taxpayer funds which have been used to provide months of intensive care) provided a reasonable physician would treat him in the US.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.