Parents don't always know best

Most parents in the same circumstances as Connie Yates and Chris Gard would likely have been tempted to do the same as them. When doctors told them their newborn son Charlie had an incurable condition and that life support should be turned off, they refused the verdict and fought on.

Their battle first took them to the High Court. They lost. In a detailed and compassionate judgment, Mr Justice Francis explained why he believed the doctors were right when they recommended that their decision was in Charlie's best interests.

Several specialists at Great Ormond Street Hospital had been involved, and the child's guardian shared their view. Their evidence was that there was nothing that could be done for Charlie and keeping him on artificial ventilation would merely delay the inevitable.

One US doctor gave the couple a glimpse of hope. He offered to provide nucleoside therapy, a treatment described as 'pioneering' by supporters and as 'experimental' by those less convinced.

The US doctor was initially going to provide evidence to the High Court. He hasn't seen Charlie. After a conversation with the Great Ormond Street team, he accepted that any attempt at therapy would be futile and that Charlie, eight months old at the time, was very unlikely to improve as a result.

Nevertheless, the doctor said he would still be prepared to offer the treatment if the couple could afford it. This raised at least two issues.

The first one is that the case is not about the money. Francis J made this very clear in his judgment. Yates and Gard have reportedly raised £1.3m to fly Charlie to the US. They need not have done that.

The question is simply whether parents should be allowed to impose treatment on a child just because they can pay for it. The answer to this must be an absolute no.

The Great Ormond Street team had considered nucleoside therapy. This could have been available on the NHS but it required a special application. This appears to have been done reasonably promptly. But by the time it was put together, Charlie's condition had deteriorated so much that the treatment was deemed incapable of achieving anything for him.

This brings us to the second question '“ expertly posited on this Practical Ethics blog post '“ which is whether nucleoside or any other therapy provides a reasonable alternative to treatment withdrawal. In the absence of medical experts who, after examining Charlie, advocated the same approach as the US doctor, the answer here would again be no.

Yesterday, the Court of Appeal upheld Francis J's decision, rejecting a new line of arguments. Their point wasn't whether therapy would be appropriate but whether the doctors had authority to make that decision.

This challenged the High Court's inherent jurisdiction to consider disagreements over a person's best interests. Where parents' decisions cause no significant harm to their child, they alone, not the court and not doctors, should choose the course of action, they said.

Lord Justice McFarlane read out the Court of Appeal's decision, and at the time of writing, a printed copy was still not available. Some newspaper headlines are already suggesting that Yates and Gard are considering an appeal to the Supreme Court. The case, their lawyers have said, raised serious legal issues. That may be so, but these serious legal issues have long been acknowledged and there is a settled process in place for the voices of all those with an interest in such cases to be heard.

Accepting the appeal judges' decision doesn't mean giving up. Doctors have been reported saying that keeping Charlie on ventilation merely prolonged the process of dying. Listening to them would be an act of kindness.

Jean-Yves Gilg is editor-in-chief at Solicitors Journal

jean-yves.gilg@solicitorsjournal.co.uk | @jeanyvesgilg

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