Tuesday, 13 June 2017

Charly Gard - Should parents have the ultimate say in whether their child lives or dies?

Tonight judges at the European court of human rights have ruled that a ten month old baby should be kept on life support in order that his parents be given time to present evidence in order to allow him to travel to America for experimental treatment.  

Charly Gard  was born with Mitochondrial Depletion Syndrome which has left him unable to sea, hear, cry or move, and he has been on life support at the Great Ormond Street hospital in London since October 2016.   But doctors at the hospital feel that he should be allowed to die peacefully as there is no hope of any kind of recovery. 

The parents have been to court on numerous occasions in order to be allowed to take Charly to America for experimental treatment at a cost of over £1m, however doctors at GOSH have argued that this would not be in his interests and that any treatment would merely prolong his suffering and not reverse any existing brain damage.  

I think at this point it needs to be said that there are no winners in this case.  For a parent, allowing your child to die goes against every parental instinct you possess. No-one expects to out-live their child, and so actively making a decision to allow that child to die is something which most parents would never be able to anticipate having to do.  And for the doctors arguing that a peaceful death would be in Charly's best interests, this too goes against the oaths they sign up to when qualifying from medical school.  No doctor wants to be making the decision to switch off a baby's life support, let alone be the one having to do it. 

However, I think it can also be said that parents are very rarely able to make such decisions objectively, as this is their child they are talking about, and this is why these cases so often end up in the courts.  

So the question that we need to ask ourselves is: should a baby be kept alive because it is the parents' wish that he be kept alive?  When making decisions which make allowances for the withdrawal of treatments, should there not be only one outcome - what is in the best interests of the patient?  

I know that many people have argued that the decision should be the parents' to make, however can any parent really say that they could objectively make the right decision which was in the interests of their child and not based in some part on their own sense of loss or failure to be able to do something?  Even if logically there was nothing which could be done?  

And how many people wanting this baby to be kept alive, taken to America on a journey which he may not survive, and subjected to treatment which has no possibility of success other than potentially lengthening this baby's already difficult life?  A life where he is unable to communicate even whether he is in pain would want another adult to be making those same decisions about them or on their behalf?  I know I wouldn't.  

In conclusion, I hope that were I ever in the same position, I could make the right decision for my child, and I hope that were I in the same position as an adult, the other adults in my life would make the right decision for me.  

I only hope I never have to find out, and wish nothing but peace to Charly and his family.  

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