CLASS Blog: Life Changing Decisions

Who should make life changing decisions – doctors or parents?

For her first CLASS Blog, Mrs Malcolm explores ethics in modern medicine.

You may have heard about a little boy called Charlie Gard, who was born in August 2016. He was quite healthy at birth, and then his parents noticed that his health and his development were deteriorating, really quite quickly. It transpired that Charlie was suffering from a rare form of Mitochondrial Disease called Mitachondrial Depletion Syndrome. This is so rare, in fact, that Charlie is the 16th person in the world to be diagnosed with it.

The mitochondria in our cells breaks down glucose and makes it into energy, for all our muscles to function. Remember that all parts of our body need energy; even the cells themselves for growth and repair. In Charlie’s case, his muscles, kidneys and brain are affected and those parts of his body are not getting enough energy to function.

Mitachondrial Disease is linked to a faulty gene; if two parents carry that faulty gene it means that it is possible for their child to either carry one faulty gene and pass that onto the next generation, or inherit both faulty genes from both parents, and be affected by Mitochondrial Disease.

Charlie has been in hospital since he was 8 weeks old, and his parents say he has got weaker and weaker. He needs a ventilator to breathe, but they have never given up hope. Their hope is undoubtedly not in question because they have raised £1.3 million to take Charlie to America for treatment. They argue that it can help Charlie live. Moreover, they say that it will help future generations because, as with any medical treatment, there is an element of experiment and trial. It may not save Charlie’s life, but in future it could save someone else’s. The trouble is, the Courts say that his parents are not allowed to take him and that he should be allowed to die without any further suffering.

Charlie’s parents say: “We just CAN’T let our baby die when there is something that might help him! We won’t give up on him because he has a rare disease. He deserves a chance and he deserves a life as much as anyone else.”

This is really hard to argue against, isn’t it? We would always expect good parents to keep us alive and care for us because they love us. But, at what cost?

We aren’t talking about money. We are talking about the quality of life. Ask your parents what you were doing at 9 months old. I expect they (hopefully!) will give a great, big smile and tell you that you were a delight. Crawling at the speed of light, smearing yoghurt in your hair, chattering endlessly and definitely knowing what you wanted!

I remember being quite ashamed one day that I hadn’t got all of the chocolate Petit Filous out of my son’s hair, and only noticing when I was dropping him off at the childminder’s. It was brown and crusty. (In my defence his hair is also brown!) He was about the same age as Charlie – 9 months – and, like you would have been, had a lust for life expressed through giggles, shouts and grabbing random objects for inspection.

Do you think Charlie has this kind of quality of life? If his doctors at Great Ormond Street Hospital have already tried to convince his parents to turn off his ventilation, do you think his parents should listen to them? Think about that before you read on!

If you do think that his parents should listen to the doctors, you are in the company of Mr. Justice Francis who said: “It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that Great Ormond Street may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”

He based his decision on the evidence that Charlie is largely unable to move. He has significant, and irreversible, brain damage. He argued that ‘world-renowned’ experts are in agreement with him, because Charlie has little quality of life. Whilst Charlie’s parents argued that he will improve if he has treatment in America, and he will not suffer, Mr. Justice Francis argued that the treatment was ‘futile’ and will ‘prolong the process of dying’ for him.

Did you think that his parents should listen to the doctors, and allow Charlie to die? Of course, there’s no right and wrong here: it’s ethics! You might be thinking yes. You might be thinking no, of course not! Everyone should always be given enough medical treatment to live and potentially enjoy life! But why? Why does anyone think that?

Even if you do not believe in God, there is something undeniably useful about borrowing religious teaching here. It’s called the Sanctity of Life. It’s hard to argue against. Of course human life is very special. Although we know all about sperms and ovums, pregnancy and birth, there seems to be something very magical about a newborn baby. Same for any human life if you think about it, and this is supported by the law, as in the UK it is illegal for anyone to help anyone else to end their life – even if they are doctors and even if they are acting on behalf of someone’s request and mean well.

The Sanctity of Life in Christianity says that human life is special because it is created by God, and created in the image of God. This means that we have moral intellect; we can debate moral situations like that of Charlie Gard, and basically your dog, or cat, can’t.

Furthermore, life is a gift from God (gifts should be cherished, not thrown away carelessly) and because Christians believe in God and life after death, they also believe that we have a soul. That soul has been implanted by God, and as scripture says, “Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations.” A Christian may conclude, then, that Charlie’s life should be preserved at all costs; yes his life is special and precious. He also has a soul, for whom God has a plan.

Mrs Malcolm, 07/05/17

What side of the debate you think you agree with the most: the Quality of Life, or the Sanctity of Life? Who should make life changing decisions – doctors or parents?

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