It is with great sadness and angst that we all read about the Charlie Gard case in late July. Like many of us, I was left asking: what does this means for those of us who have children, or aspire to? I wonder how many of us have grasped the very serious implications of the judge’s decision, reached using a law called the Children’s Act 1989, to decide the fate of little Charlie, including his treatment and the subsequent removal of his life support machine. The ramifications for faith communities like ours are profound and disturbing.
Charlie suffered from Mitochondrial DNA Depletion Syndrome, which causes progressive muscle-defect and brain illness. I am not here to say who was right, who was wrong, or anything related to the case. But I do want to make the Jewish community aware of what this case exposed: a serious flaw in the system which allows a judge to intervene in our children’s lives, up to and including the decision to turn our child’s life support machine off.
I thought we lived in a free society, free to choose where our kids go to school, what religion we raise them in, if any, and what food we buy them? This ruling shows where that freedom ends. It is an ugly, invasive law that usurps parents’ rights in a major part of a child’s life if, God forbid, anyone parent should be in that position.
We saw how it removes parents’ rights to choose whether their child should be treated in a hospital here or elsewhere, even if specialist treatments only exist elsewhere. If doctors in the UK exhaust the options open to them in the UK, why do they get to say parents can’t go abroad to try, even if the chances are slim?
I contacted my local MP, Mike Freer about this, asking him to help give parents the right to decide where a child is treated if no UK hospital offers specialist treatment of the kind Charlie’s parents sought. His response astounded me.
He stated: “The Gard case raises difficult issues and it is understandable that any parent will wish to take every measure, if it provides a chance for their child to live. The doctors and clinicians have a duty to do all they can, but to do no harm, if in their clinical opinion the available treatments will not work or do more harm than good. Where parents and doctors cannot agree then the matter goes to court. I remain comfortable with that.”
When I contacted my rabbi about it, he told me that every case is different and needs to be made on a case-by-case ruling in terms of Halacha. But Jewish law does not say that if a doctor believes there is no ‘quality of life’ we should just switch off the life support machine.
I know this is a very delicate issue, and as the father of a 21-month old, I know I may be particularly sensitive to it, but I feel we must ask ourselves: should these decisions be ours, or are we going to allow judges to intervene in desperate times and strip the fundamental right to decide on the future of patient care?