When it comes to parents and their children, it is a general assumption that parents know what’s right for their child – whether that’s deciding what school they will attend, what they’ll eat and when they go to bed.
But when a child is terminally ill, wise, trusted and well educated medical professionals will play a large role in agreeing the wellness of the child and the decisions about what is best with regards to end-of-life care. And this is where parents and the medical world increasingly collide.
Very recently, your newsfeed was undoubtedly full of the profoundly sad and challenging case of Alfie Evans, a 13-month old toddler who had progressive neuro-degenerative disease and had been in a coma for over a year. Doctors came to the conclusion that further treatment was no longer in Alfie’s best interests. However, his parents believed, and argued, that Alfie’s life should be prolonged as long as medically possible. This resulted in a High Court hearing and then appeals that went to the European Court of Human Rights. So, why don’t parents get the final say?
The fact is that parents do have a say. They are given parental rights and responsibilities enabling them to make medical decisions on the child’s behalf under The Children Act 1989. But in unfortunate circumstances when the child is terminally ill, parental rights and responsibilities will only reach so far.
If medical professionals believe that the child shouldn’t receive any more medical treatment or there’s nothing more to be done - but the parents oppose, they can then take matters to court to override the parents.
It’s no small feat. Parents’ wishes can only be overruled by taking matters to court because doctors have no legal right or responsibility to make decisions over the child without the parents’ or the courts permission. The court will act upon what it believes to be the child’s best interests and will base all decisions from the child’s perspective. If the judge rules in favour of the hospital, only then is parental responsibility overruled.
It’s difficult. There can be a no more distressing time for parents in this situation, and this process, however harsh it may seem, aims to take emotion out of the situation whilst keeping the child at the heart of the matter.