As the drama about Ashya King unfolded, it was hard to gain an understanding of the main issues for the little boy, such was the public – or at least the press – clamour to demonise someone. In reality, the issues were straightforward. Ashya needed specific medical observation and an internationally recognised standard treatment for his condition, and his parents disagreed with what had been proposed by the hospital trust. In the end, to resolve the case, Ashya’s parents produced an alternative treatment plan which satisfied the court. Cafcass’ role in such medical treatment cases is a complex one. With older children, such as the child in Ian McEwan’s new novel, The Children Act, a children’s guardian has to meet with the child needing treatment and advise a court whether she or he should be treated against their wishes. Opposition can be for any reason, though it is usually on religious grounds. Many children in this position do not want to die, yet they do not want to go against their religion, or against their perception of what their religion or their God is expecting from them. Children’s guardians often see and talk to children in highly charged atmospheres – a hospital room, surrounded by a vast array of high-tech medical equipment, with a child or young person in a critical condition and concerned parents, and sometimes local religious leaders – veering between articles of faith and sheer human emotion about what should happen.
Our role is to communicate with the family but most importantly to talk to the young person if this is possible, and usually to help them make a decision to live rather than to die. It is more complicated with young people over 16 who may have firm views about treatment but even with younger children, to recommend they are treated against their wishes, or that of their parents, has to be on the basis of professional knowledge and judgment. My own general view is that children must be given the right to live until they become old enough as adults to choose to die if they see no alternative.
The other main group of cases we become involved in on a similar basis are when children are being kept alive on a life support machine and there is a conflict of opinion between a medical team and the parent or parents about whether it is time to turn the machine off or not. Often these children are very young. We have to make an assessment of factors such as quality of life, the ability to communicate, the degree of pain or discomfort, if any, being felt by the child, as well as the wishes of parents. We have to deduce what the child’s wishes and feelings would be if they could be expressed. These ‘right to live or die’ cases are invariably distressing to all concerned, including the medical teams who always become very involved and totally committed to the welfare of the child. It is just that the welfare of the child can become a battleground. Our role is not to sit on the fence, but to recommend what we think is in the best interests of the child, weighing up all factors. A judge then has to weigh up all views, including ours, and reach what is always a momentous decision in every case.