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Charlie Gard: parents' 'last wish' is for son to be able to die at home Charlie Gard: judge to decide on Wednesday if child can die at home
(about 3 hours later)
Charlie Gard’s parents have told the high court that their “last wish” for their son is that he should be allowed to 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 son’s life support system, they returned to court on Tuesday to ask that Great Ormond Street hospital’s objections to Charlie being allowed to go home be overruled. 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.
Charlie is expected to be removed from his ventilator at the hospital in the next few days following his parents’ abandonment at an emotional high court hearing on Monday of their legal fight to be allowed to fly him to the US for experimental treatment. 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 the often acrimonious five-month court battle with Gosh, where the baby is being treated, took another turn on Tuesday as the parties returned to court to decide where Charlie should spend his final moments. 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”.
Grant Armstrong, representing the parents, said the case was returning to court for the “most difficult emotional part ... [the] circumstances in which Charlie’s passing will be conducted. The parents’ last wish is to take Charlie home. 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.”
“We struggle with the difficulties 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.
Katie Gollop QC, for the hospital, said the parents had, since Saturday, refused a number of offers of mediation over the issue “for reasons Great Ormond Street will never know”. 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”.
She said Gosh was willing to fulfil their wishes “if it is practical, possible and safe, and in Charlie’s interests so that he comes to no harm”. 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.
A written statement given to Mr Justice Francis on behalf of Great Ormond Street doctors said that finalising an end-of-life care plan was the “most delicate and difficult task”. The judge said the hospital had suggested a “hospice option”. 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.
Connie Yates and Chris Gard desperately want him to go home to die, but Armstrong said the hospital had raised objections, “despite having said in April that there were no obstacles to Charlie being flown to the US”. 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”.
Gollop said the previous willingness to let Charlie go to the US was based on him being accompanied by intensive care staff and the practicalities had not been finalised. She indicated that providing intensive care to Charlie outside a hospital setting was not simple. 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”.
Armstrong said no Gosh staff had visited the Gard family home or the house of one of their relatives, which has been suggested as a place for Charlie to spend his final 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’s position statement said the key obstacle was for Charlie to have invasive ventilation to force air into the baby’s lungs, which it believes can only be provided in a hospital setting. Gollop said Gosh had tried to identify a hospice that was willing to take Charlie, which she said had been difficult given the publicity surrounding the case. 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.
She said she received an email from a purported expert shortly before Tuesday’s hearing stating that it was possible for Charlie to spend his final days at home, but the expert had had no contact with staff treating Charlie. 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.”
Victoria Butler-Cole, the lawyer instructed by Charlie’s guardian, said the latest disagreement was “an example of what happens when there is such a fundamental breakdown in communications”. 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 said he would rather the parties resolved the matter outside the courtroom, but added that he would reach a decision if necessary. Describing it as “the most difficult, painful process for the parents”, Mr Justice Francis urged the parties to resolve their differences outside the courtroom.
At the hearing on Monday, Yates and Gard said muscle atrophy suffered by Charlie in recent months meant the proposed nucleoside bypass therapy no longer offered him the prospect of a meaningful life. 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.
They asked for privacy in their “last precious moments” with their son. 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.