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British Court Decides Charlie Gard Will Be Moved to a Hospice to Die

Ms. Yates repeatedly shook her head, visibly frustrated, during that hearing. At one point, she broke down in tears and shouted, “What if it was your child?” before fleeing the courtroom.

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 of President 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” that he required could be provided only in a hospital.

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.

If no agreement is reached, legal experts said, the hospital can proceed with its proposal to move Charlie to a hospice on Friday. Shortly after that, the life support would be removed.

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.

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.

He noted that hospice care was often hugely beneficial for the parents “at an extraordinarily traumatic time.”

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, which is caused by a different genetic mutation.

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 from across the Atlantic, before he had examined Charlie or reviewed his full medical records. The doctor examined Charlie last week, about six months after the hospital said it first invited him.

The hospital said in a statement that 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 in a statement that he had no financial interest in the treatment he had proposed for Charlie.

Source: NYT > World

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