14:31, July 25 62 0 theguardian.com

2017-07-25 14:31:03
Charlie Gard: judge to decide on Wednesday if child can die at home

A judge will decide on Wednesday whether to grant the “last wish” of Charlie Gard’s parents and allow their son to go home to die.

A day after Connie Yates and Chris Gard ended their opposition to the removal of their critically ill baby’s life support system, the couple returned to court on Tuesday to ask that Great Ormond Street hospital’s objections to him being allowed to go home be overruled.

During another tense hearing, the court heard the objections related to the impracticality of providing the intensive care 11-month-old Charlie is receiving in hospital at home for the “period of days” his parents want him kept alive.

But Grant Armstrong, the lawyer for Yates and Gard, said he was at pains to understand why the hospital sought to deny them their “last wish”.

He said: “We struggle with the difficulties which the hospital has placed in the way of the parents’ wish to have a period of time probably a relatively short period of time … before the final act in Charlie’s short life.”

The infant’s parents abandoned their fight to allow him to be flown to the US for experimental treatment on Monday, having determined it was no longer viable.

But Armstrong said the couple had been forced to return to the high court in London on Tuesday for the “most difficult, emotional part of the case, [the] circumstances in which Charlie’s passing will be conducted”.

He claimed that, having agreed in principle in April that it would be possible for Charlie to be flown to the US for treatment, it made no sense for Great Ormond Street hospital (Gosh) to say the child could not be taken to the family home in west London or that of one of their relatives – the parents’ two preferred options.

But Katie Gollop QC, for Gosh, said the flight to the US would have required a specialist intensive care team, which would not be available in a home setting for days on end.

She said the hospital was willing to fulfil the parental wishes if it was “practical, possible and safe, and in Charlie’s interests so that he comes to no harm”.

Victoria Butler-Cole, the lawyer instructed by Charlie’s guardian, said the options with respect to him dying at home were withdrawing ventilation within “a matter of hours” or after “a period of days”.

But she said the latter option was unrealistic because it would require “replicating intensive care outside an intensive care unit”, including a team of three doctors.

Gosh said it was unable to provide such a team or source one from anywhere in the country. The court heard it was difficult to get medical professionals to provide such care at home because of the risk of complications and the fact that they would not be covered by insurance.

Speaking after the hearing, Yates pleaded for any paediatric intensive care doctor to come forward to help them. She said: “We promised Charlie every day we would take him home. It seems really upsetting after everything we’ve been through to deny us this.”

Gollop said Gosh had identified a hospice that was willing to take Charlie, which she said had been difficult given the publicity surrounding the case. But, as Yates wept and held her head in her hands, Armstrong said that although that was preferential to Charlie dying in hospital it would still be seen as “brutality” if he were only there for a few hours.

Describing it as “the most difficult, painful process for the parents”, Mr Justice Francis urged the parties to resolve their differences outside the courtroom.

As it became apparent there was no prospect of that happening, he said given what he had heard about the need for an intensive care team, were he deciding the issue on the civil standard of proof he would rule out the prospect of Charlie being ventilated for days, whether in a hospice or at home.

But he went on to say that “given the gravity of the situation and the need to be as human as I can” he would give Charlie’s parents more time to make their case and make a final decision, in the absence of any unexpected developments, on Wednesday afternoon.

At the end of the often acrimonious hearing, during which Butler-Cole told the court that the latest disagreement was a reflection of what happens when there was “such a fundamental breakdown in communications”, Armstrong, who was in tears in court on Tuesday, angrily confronted Gollop.