Baby Ib Britain on Life Support Charlie Gard

Chris Gard and Connie Yates with their son, Charlie, at Great Ormond Street Hospital in London.

Credit... Family of Charlie Gard, via Associated Press

LONDON — The British High Court decided on Thursday that Charlie Gard, the chronically ill British infant whose condition has spurred widespread debate about end-of-life 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ventilation to continue to be provided to him, and it is therefore lawful and in his best interests for it to be withdrawn," the court order said.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 further 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 on 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 Ms. Yates, a caregiver, and Charlie's father, Chris Gard, who works in a mailroom, ended their monthslong 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 attention of Pope Francis and President Trump, and underlined the perils of what can happen when a hospital and the parents of a sick child differ fundamentally on 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, the life support would be removed.

Ms. 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 round-the-clock medical attention and weeks of training the family to manage the equipment, he said.

Dr. Robert D. Truog, a physician in the pediatric intensive care unit at Boston Children's Hospital and director of the Center for Bioethics at Harvard Medical School, said the same policy on providing life support to terminally ill children at home applied at his hospital in the United States.

"We often take children home to die, and we are very proud of that," he said. "But the life support is usually removed in the course of a few hours so that the child can die surrounded by family and loved ones."

Charlie's parents initially sought experimental treatment pioneered by Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York. The treatment had been tested on mice and on 18 people with a mutation in a gene known as TK2. But it had never been tried on someone with Charlie's severe form of mitochondrial DNA depletion syndrome.

After an M.R.I. scan last week, medical experts concluded that the treatment would no longer be effective, and Charlie's parents agreed that life support should be withdrawn.

Great Ormond Street Hospital has chided Dr. Hirano for initially offering his advice on the case before examining Charlie or reviewing his full medical records. The doctor examined Charlie last week.

The hospital said it had also been concerned "to hear the professor state, for the first time, whilst in the witness box," that he had retained a financial interest in some of the compounds used in the treatments for mitochondrial DNA depletion syndrome.

But Dr. Hirano said he had no financial interest in the treatment he had proposed for Charlie.

Baby Ib Britain on Life Support Charlie Gard

Source: https://www.nytimes.com/2017/07/27/world/europe/uk-charlie-gard-baby-parents.html

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