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Charlie Gard can be cared for in hospice, his parents tell court Parents of Charlie Gard agree he will spend final hours of life in hospice
(about 4 hours later)
Charlie Gard’s parents say they have found a team willing to help the critically ill baby spend “a week or so” at a hospice before his life systems are removed. Charlie Gard will be transferred to a hospice to spend his final hours, after his parents abandoned a fight to take him home to die.
Connie Yates and Chris Gard had hoped to take their son, who has a rare genetic condition, home to spend his final hours as their “last wish”.Connie Yates and Chris Gard had hoped to take their son, who has a rare genetic condition, home to spend his final hours as their “last wish”.
But they ran into opposition from Great Ormond Street hospital, where Charlie is on life support, which said that because of the difficulties of providing invasive ventilation at home and the potential for problems, that would not be possible.But they ran into opposition from Great Ormond Street hospital, where Charlie is on life support, which said that because of the difficulties of providing invasive ventilation at home and the potential for problems, that would not be possible.
On Wednesday afternoon, Grant Armstrong, representing Charlie’s parents, told the court a doctor with previous experience as a surgeon in intensive care, who runs a team including a paediatric doctor, had offered to provide the necessary care in a hospice. At the high court on Wednesday, they said that they would instead seek to move him to a hospice, hopefully for “a week or so” but the hospital said that even that would require a 24/7 intensive care team at the hospice, which Gosh was unable to source. It has suggested that he should be removed from life support within hours of being transferred to a hospice.
Armstrong said the doctor was on his way to court as he spoke. The lawyer said they were also able to put in place nursing staff, privately paid for, and a company had offered to provide a ventilator. “Several of the nurses at Great Ormond Street have volunteered to assist in the care of Charlie,” he said. The judge, Mr Justice Francis gave the parents until Thursday to find a team that could support Charlie for the days they are looking to spend with him at a hospice.
Much of the debate on Tuesday had centred around the availability of an intensive care team. Victoria Butler-Cole, the lawyer for Charlie’s guardian, had said that three doctors were needed if Charlie was going to be kept alive for a “period of days” as his parents wanted. “Unless by 12pm tomorrow the parents and guardian and Great Ormond Street hospital can agree alternative arrangements, Charlie will be transferred to a hospice and extubated shortly thereafter,” he said.
Katie Gollop QC, who is acting for Great Ormond Street hospital, said the hospital had searched “the length and breadth of the country” for such a team without success. Gollop suggested that a hospice identified by the hospital would be more viable than taking Charlie home, but with life systems withdrawn after a few hours. He added: “It seems to me the time has come when a decision has to be taken to a very, very sad conclusion.”
Armstrong’s submissions suggest that Gard and Yates may have conceded defeat in their battle to take Charlie home but are now fixed on keeping him alive for an appreciable length of time. Francis said he envisaged Wednesday’s proceedings being “the final hearing”, in a case which has been going through the courts for five months.
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 because of muscular atrophy he had suffered while the case went through the courts. The details of when the transfer and removal of life support take place were discussed while journalists were removed from the court but earlier, Fiona Paterson, representing Gosh, said in open court that “it should be Friday”.
But the case was back in court on Tuesday as the hospital and Charlie’s parents again found themselves at odds, this time over where he should spend his final hours. After the private discussions on the details had taken place, Yates, shouted at the guardian representing Charlie as others filed back into court.
She repeatedly shouted “What if it was your child?” and “Hope you’re happy with yourself” before leaving the court in tears.
Afterwards, an unnamed family friend said: “The hospital have set the bar so high that in terms of clinical team for Charlie’s end of life nothing seemed good enough for Gosh. The reality is Charlie is very stable, not in pain and rarely needs a doctor. It is therefore difficult to understand why Charlie could not die at home. All he needs is a ventilator which pumps room air into his lungs.
“It is extraordinarily sad that there’s been so much fuss about him dying at home. Connie and Chris have conceded a hospice but it was not their first choice. They will be devastated they have not been granted their final wishes as parents.”
The family later put a message on Facebook appealing for a paediatric intensive care consultant to come forward before 12pm on Thursday. It said: “Please only email if you can help us! We need some peaceful time with our baby boy.”
Earlier, Yates’s hopes of being able to take Charlie to the hospice for an appreciable period of time were raised, when her lawyer, Grant Armstrong, announced that a doctor “with experience as a surgeon” in intensive care and who ran a team with a paediatric doctor had offered to oversee his life support at the hospice and was on his way to court.
However, it later emerged that he was a GP with “no experience of intensive care”, according to Victoria Butler-Cole, the lawyer for the guardian.
Armstrong also said that several nurses at Great Ormond Street had volunteered to assist in Charlie’s care outside the hospital setting.
Charlie’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 because of muscular atrophy he had suffered while the case went through the courts. But the case was back in court on Tuesday as Gosh and Charlie’s parents again found themselves at odds, this time over where he should spend his final hours.