Relatives of Archie Battersbee, who died after his life support treatment was withdrawn on Saturday, have called for change in the way such cases are handled, saying they “want something good to come out of this tragedy”.
The 12-year-old’s parents fought a bitter legal battle to try to stop doctors, who believed Archie to be brain stem dead, from removing treatment. After that failed, they began a fresh legal challenge – also unsuccessful – for him to be moved to a hospice to die.
In a statement released through the Christian Legal Centre, which has been supporting the family’s case, the family said: “We want something good to come out of this tragedy and the horrendous experience we have been put through by the system.
“No parent or family must go through this again. We have been forced to fight a relentless legal battle by the hospital trust while faced with an unimaginable tragedy. We were backed into a corner by the system, stripped of all our rights, and have had to fight for Archie’s real ‘best interests’ and right to live with everything stacked against us.
“This has now happened too often to parents who do not want their critically ill children to have life support removed. The pressure of the process has been unbelievable. There must be an investigation and inquiry through the proper channels on what has happened to Archie, and we will be calling for change.”
Archie had been in a coma since 7 April, when he was found unconscious by his mother, Hollie Dance, at his home in Southend-on-Sea, Essex. A legal battle pitting Dance, 46, and Archie’s father, Paul Battersbee, 57, against Barts Health NHS trust began in May before reaching its conclusion on Friday evening, when the European court of human rights declined to consider whether he should be moved to a hospice.
Archie’s court-appointed guardian had agreed with the trust that it was in the 12-year-old’s best interests for life-supporting treatment to be withdrawn and that moving him to a hospice would be too risky.
Similar acrimonious cases involving children receiving life supporting treatment, including Charlie Gard, Alfie Evans and Tafida Raqeeb, have prompted similar calls for a change in the law to increase parental rights when such tragedies occur.
Dance has previously called for reform through “Charlie’s law”, which was proposed by Chris Gard and Connie Yates, after they lost a legal fight to prevent treatment for their son being withdrawn at Great Ormond Street hospital. They had wanted him to be taken to the US for treatment. Charlie died in July 2017, aged 11 months.
The Department of Health and Social Care is currently commissioning a review into the causes of disagreement in the care of critically ill children as required by the Health and Care Act 2022. Lady Finlay, a crossbench peer and professor of palliative medicine, has said the inquiry would look at independent mediation to prevent “adversarial conflict” in court.
The intervention of third-party groups, such as the anti-LGBT and anti-abortion Christian Legal Centre, in such cases has come under fire. In Alfie’s case, a high court judge said submissions to the court by Pavel Stroilov, a centre law student representing the toddler’s parents, were “littered with vituperation and bile” that were “inconsistent with the real interests of the parents’ case”.