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US doctor's intervention in Charlie Gard case 'raises ethical questions'

A banner hung outside the high court in London in support of Charlie Gard
A banner hung outside the high court in London in support of Charlie Gard. Photograph: Carl Court/Getty Images

At the heart of the long legal battle to treat Charlie Gard or allow him to die was the figure of Dr Michio Hirano, an eminent doctor and expert in his field, but who had never seen the child he thought he could help. In the wake of the long and damaging case, ethicists say there are questions over the ability of medical experts to come to opinions without fully reviewing the evidence and seeing the patient face to face.

Jonathan Montgomery, professor of health care law at University College London, said there could be a case for a judge stipulating that a medical expert must see the patient before giving their opinion in court.

Hirano gave evidence to the high court in April in front of Mr Justice Francis. “Should the judge have directed that the expert needed to see the patient?” Montgomery asked.

Dr Michio Hirano
Dr Michio Hirano gave evidence to the court by video link and was never cross-examined. Photograph: AP

Hirano, a neurology professor from Columbia University in New York, only had evidence from laboratory tests and a handful of patients with a different ,though related, condition to suggest that the experimental treatment might help Charlie.

“We will never know whether or not it would have changed the evidence he gave at that time, but it would give us more confidence in that evidence if he had come and examined Charlie himself,” Montgomery said.

Dominic Wilkinson, a consultant neonatologist and professor of medical ethics at the University of Oxford, pointed out that every expert who had seen Charlie had sided with the Great Ormond Street team in believing nothing could be done for him. That included an independent medical expert in mitochondrial diseases from Southampton University who was asked by the parents for a second opinion. It also included Charlie’s court-appointed independent guardian.

Wilkinson said that if Hirano and the other international doctors who proposed nucleoside therapy for Charlie had actually seen him, “who knows what assessment they would have reached. It is quite possible that they would have come to the same conclusion”. It was only after Hirano saw Charlie last week that his parents, Connie Yates and Chris Gard, decided to give up the legal fight to have him taken to the US for treatment.

On Monday, Great Ormond Street hospital made a statement to the court strongly criticising Hirano, who gave evidence to the court by video link and was never cross-examined, because Charlie’s parents gave up their case.

“On 13 July he stated that not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition (obtained from experts, all of whom had taken the opportunity to examine him and consider his records) or even read the judge’s decision made on 11 April,” the statement said. The hospital also criticised Hirano for not declaring earlier his “financial interest” in some of the drugs he wanted to prescribe.

But on Tuesday, Hirano denied having any financial interest in the experimental treatment. In his statement Hirano said: “I became involved in Charlie’s case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether an experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie’s condition.

“As I disclosed in court on July 13, I have relinquished and have no financial interest in the treatment being developed for Charlie’s condition. Unfortunately, a MRI scan of Charlie’s muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment.”

Julian Savulescu, the Uehiro chair in practical ethics at the University of Oxford, felt there were important issues that had not been clarified by Great Ormond Street. He said that although the hospital had said Charlie should not be treated because he had irreversible brain damage, the MRI scan in January showed normal brain structure, even though the EEG tests showed very abnormal brain activity. This led Charlie’s parents to believe treatment was possible at that time and to fight the court judgment ,which appeared to be based on brain damage. The hospital should be allowed to release their evidence about his condition, Savulescu said.

“I understand that you can’t release private papers, but all of the information has been put out by the Gards and the court and if there are relevant facts we should know them now,” he said. “Otherwise everyone is left wondering what went on.”