Decision-making for children: who knows best?
  • 5th May 2017
  • Article written by Lucy Nevard
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The high profile but tragic story of Charlie Gard, who is the baby suffering from mitochondrial depletion syndrome, may have caught your attention recently.  Though Charlie was born healthy in August 2016, he began to lose weight and strength and was diagnosed with the debilitating genetic condition which causes progressive muscle weakness. This rare disease has left Charlie with significant irreversible brain damage; he is deaf and unable to cry or move.

This case has recently come before the courts for a judge to decide Charlie’s fate. To many, this seems unfair: why should this decision be taken away from his parents?

The answer to this lies in the law relating to children.

In principle, it is the responsibility of parents to make decisions on behalf of their children. However, where the parents do not agree with the proposed treatment or withdrawal of treatment as suggested by the clinicians responsible for their child’s care, the court is able to intervene and overrule any decision made. In Charlie’s case, Mr Justice Francis recognised this and in a press summary released to the public following judgment on 11 April 2017, said: “although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interests”.

This reference to the child’s “best interests” is in fact a legal test and involves balancing all of the relevant factors, including medical, emotional and welfare issues. The Court of Appeal in Wyatt v Portsmouth NHS Trust [2005] said that in deciding what is in the best interests of a child, “the welfare of the child is paramount and the judge must look at the question from the assumed point of view of the patient”.

For baby Charlie, it has become clear from the evidence presented that there is no accepted cure for the disease he is suffering from. Although an American doctor has offered pioneering treatment, no one in the world has ever treated Charlie’s condition with nucleoside therapy and as such, it is impossible to know whether Charlie would respond positively. Regardless of this, Charlie’s brave and dedicated parents have grasped hold of this possibility, as any parent would, and launched the campaign “#CharliesFight” to raise funds to take Charlie to The USA for treatment. At present over £1.26 million has been raised for the cause.

However, Mr Justice Francis came to the conclusion that although medical science may benefit from the experiment, “experimentation cannot be in Charlie’s best interests unless there is a prospect of benefit for him”.

Of course the opinion of Charlie’s parents has been considered to assist in deciding what is in his best interests but as Ms Justice Russell acknowledged in Great Ormond Street Hospital for Children Foundation NHS Trust v NO & KK and MK [2017] “I keep in mind that the view of any parent is likely, however understandably, to be coloured by his or her own emotions, feelings and beliefs. The wishes of a parent may serve to inform and provide explanatory background as to the quality of the child’s relationship with her parents but it is not necessarily relevant to an objective view of the best interests of their child”.

As a result of this, Mr Justice Francis reached his decision with the “heaviest of hearts” but with “complete conviction” for Charlie’s best interests, that it is in his best interests for all treatment to be withdrawn save for palliative care.

Thousands of people have voiced their opinions on this case on social media. The decision has been branded “so wrong”, “disgusting” and “unfair”. Others have suggested that “the system has failed” and “only parents should make this decision”. Some have even chosen to personally attack Mr Justice Francis.

Although for many this outcome is difficult to swallow, it remains to be said that Mr Justice Francis was applying the law to decide the right outcome for Charlie based on the evidence before him. It would have been unlawful for the court to give its consent for the treatment to go ahead if it was not in Charlie’s best interests to do so and this must be borne in mind.