U.K. healthcare system repeatedly removes life support against parents’ wishes

When Hollie Dance read headlines earlier this month about 8-month-old Indi Gregory’s death, she said she felt “emotionally connected” to Indi’s parents. Indi died of a rare disease after doctors removed her life support against her parents’ wishes.

Last year, Dance found her 12-year-old son, Archie Battersbee, unconscious in their home after he fell over the banister with a ligature around his head. Suspected to be a failed social media challenge, the incident left Archie in a coma in a London hospital. Even though Dance said her son could still squeeze her fingers, doctors with Britain’s National Health Service pronounced him brain-dead, and courts ruled to take him off life support over his mother’s protests. In August 2022, Archie died.

“It’s still very raw with me,” Dance said. “[I] know exactly what those parents are going through in there.”

Indi Gregory died on Nov. 13, after spending her entire life in a U.K. hospital, receiving treatment for a rare mitochondrial disease that limited her cells’ ability to be supplied with energy. Two months earlier, Indi’s parents, Dean Gregory, 37, and Claire Staniforth, 35, sued Queen’s Medical Centre when staff determined that continuing to treat their daughter would do more harm to her than good. Italian Prime Minister Giorgia Meloni stepped in to grant Indi Italian citizenship and offer fully funded treatment at a children’s hospital in Rome, but on Nov. 10, a British judge denied the family’s appeal.

Indi and Archie are not the first cases of U.K. children who died after healthcare providers removed life support against the parents’ wishes. A series of similar stories over the past decade, show what can happen when judges and hospitals—not parents—make decisions about government-funded healthcare. Dance and some other family members of children who died are pushing back.

In July 2017, 11-month-old Charlie Gard died one week before his first birthday. His parents raised over $1.6 million to have him treated in the United States for the same mitochondrial condition that Indi had. But the British Supreme Court ruled to remove Gard’s life support after new brain and muscle scans showed his condition had deteriorated during the time spent litigating his case.

Less than one year later, 23-month-old Alfie Evans died from neuroblastoma after courts denied Italy’s request to transfer him to one of their hospitals. Doctors advised that continuing treatment was “unkind and inhumane.” In September, hospital staff took a 19-year-old woman who also had the same mitochondrial condition as Indi and Charlie off life support even after she told doctors, “I want to die trying to live. We have to try everything.”

Like Indi, Archie was not allowed to have his life support removed at home. “The fact that they get to play God with who lives, who dies, I think it’s very concerning,” Archie’s mother told me. “Those babies have obviously grown inside us, and to have all your rights stripped like that, it’s so heartbreaking. And it’s wrong.”

Not all cases have ended like those. In 2019, British courts allowed the parents of then-5-year-old Tafida Raqeeb to transport her to an Italian hospital for further treatment. U.K. doctors had said the brain-injured girl, who relied on a ventilator, was unaware and had no hope for recovery. But the family’s lawyers and the Islamic Council of Europe argued that removing life support would be a “great sin” according to the parents’ Islamic beliefs.

Dance said the fight to keep these children alive under government-funded healthcare begins long before courts rule to remove their life support. In a 2020 report from The British Medical Journal, the NHS paid over $3 billion—almost 2 percent of the organization’s budget—in clinical negligence claims in 2018-2019. The amount of people seeking private insurance has doubled since the pandemic as NHS wait times continue increasing. Consecutive years of government lockdowns and employee walkouts causing a decrease in personnel have also raised the average wait time for an ambulance in the U.K. from about 7 minutes in 2018 and 2019 to 8 1/2 minutes in 2021 and 2022 for critical calls. Less urgent calls wait for 3 hours on average, which is double the time from previous years.

Charlie Gard’s parents later worked with government officials to develop Charlie’s Law in an attempt to protect parental rights and keep disagreements over children’s medical care out of court. Soon after her son’s death, Dance worked with her local government officials to draft Archie’s Army Law, which aims to help parents discover more available care options before a court steps in. The families continue to campaign with lawmakers to pass their draft legislation, and Dance’s local member of parliament supports her measure. “They’ve picked the wrong families to do it to,” Dance said. “We’re fighters.”