The Atlanta Journal-Constitution
Terminally ill baby will move to hospice
U.K. court: Parents can’t spend last days with son at home.
LONDON — The British High Court decided Thursday that Charlie Gard, the chronically ill British infant whose condition has spurred widespread debate about end-oflife care and parents’ rights, will spend his last moments in a hospice before he is taken off life support.
“It is not in Charlie’s best interests for artificial ventilation to continue to be provided to him and it is therefore lawful and in his best interests for it to be withdrawn,” the court order said.
The decision did not give more details about exactly when life support would be removed, but it came after the judge presiding over the case set a deadline of noon Thursday for the parents and the hospital overseeing his care to come to an agreement.
During a hearing Wednesday, Justice Nicholas Francis of the High Court said, “This indecision is compounding the parents’ misery.”
On Thursday, Sky News quoted the baby’s mother, Connie Yates, as saying that the hospital had “denied us our final wish.”
She added: “We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way.
“Most people won’t ever have to go through what we have been through: We’ve had no control over our son’s life and no control over our son’s death.”
Charlie, who would turn 1 year old on Aug. 4, has a rare and debilitating genetic condition known as mitochondrial DNA depletion syndrome. He cannot see, hear, swallow or cry.
This week, Yates, a caregiver, and Charlie’s father, Chris Gard, who works in a mailroom, ended their months-long legal battle to get the infant experimental treatment, which could have involved taking him to the United States, acknowledging
that his illness was irreversible and that he should be taken off life support.
They also accepted that their desire for him to go home for his last days was not possible, their lawyer said.
The case captured the attentions of Pope Francis and President Donald Trump, and underlined the perils of what can happen when a hospital and the parents of a sick child differ fundamentally about treatment and care, and communication between the parties breaks down.
The question of when and where he should die — and how long he should be kept alive — became another source of acrimony between the parents and the institution responsible for his care, Great Ormond Street Hospital.
The parents had said that their last wish was to spend several days at home with Charlie before his life support was removed. But Great Ormond Street Hospital said that the “invasive ventilation” over several days required a team of intensive care specialists and that the Gard family home was unlikely to be able to meet his needs.
It also said the ventilator would not fit through the family’s front door in West London.
The hospital said that the plan to end his life “must be safe, it must spare Charlie
all pain, and it must protect his dignity.” It suggested that he should die in a hospice that would offer the parents privacy in their child’s final moments.
Grant Armstrong, a lawyer for the parents, initially accused the hospital of “creating obstacles.” On Wednesday, however, he said that the family had agreed that Charlie would move to a hospice and had found a team of doctors and nurses willing to care for him until life support was removed after about a week.
But Great Ormond Street Hospital said that arrangement was not feasible amid concerns that the doctor organizing the care was not a pediatric intensive care specialist.
On Thursday, the hospital was allowed to proceed with its proposal to move Charlie to a hospice on Friday. Shortly after that, life support would be removed.
Yates said in her statement on Thursday, “I’m not allowed to disclose the time or place but I’m shocked that after all we’ve been through they won’t allow us this extra time.”
Dominic Wilkinson, a neonatologist and a professor of medical ethics at Oxford University, said that, while hospitals sometimes allowed very sick children to end their lives at home over the course of several hours, he was not aware of any hospital that would allow a terminally ill child to spend several days on a home ventilator.
Such a move could include requirements such as roundthe-clock medical attention and weeks of training the family to manage the equipment, he said.
‘We just want some peace with our son.’
Connie Yates Charlie Gard’s mother