Bioethics institute urges UK to review parental rights of very ill kids

MANCHESTER, United Kingdom — A Catholic bioethics institute urged the UK government to speed up a review of the rights of the parents of sick children after doctors ended the life of a brain-damaged boy against the wishes of his parents.

Archie Battersbee, 12, died Aug. 6 in the Royal London Hospital about two hours after medics switched off his ventilation.

The child’s mother, Hollie Dance, and his father, Paul Battersbee, had unsuccessfully contested the decision to withdraw treatment in the High Court and then in the Court of Appeal.

The Oxford-based Anscombe Bioethics Centre, serving the Catholic Church in the UK and Ireland, responded to the child’s death by saying the case demonstrated a lack of protection for the rights of parents and for severely disabled patients.

Anscombe urged Steve Barclay, secretary of state for health, to expedite sections of the Health and Care Act 2022 that commit the British government to investigating the possibility of drafting legislation to uphold parental rights in such cases and to allow seriously ill children to be taken abroad for treatment at reputable health institutions overseas.

In an Aug. 6 statement, the center noted the parents’ “strenuous objections” to the decision to withdraw treatment and described court rulings in favor of the National Health Service as “a pyrrhic victory.”

“No one wins when decisions are made in a way that increases the distress of those who will feel the loss most deeply,” said the statement.

“The court battle over Archie Battersbee’s care is the latest example of the dying of children becoming complicated by unresolved conflict between parents and hospital authorities,” it said. “It seems clear that there are serious problems with the current clinical, interpersonal, ethical and legal approach to these situations.”

Anscombe said Barclay should work “urgently to bring into force” Section 177 of the Health and Care Act, which is being implemented incrementally in the UK after it passed into law in April.

The section, introduced as amendments in the House of Lords, demands a review into the causes of disputes between parents of critically ill children and health care providers in England.

The section also requires the health secretary to publish and present to Parliament a report on the outcome of the review within one year of the date on which the section comes into force.

The statement said: “The tragic case of Archie Battersbee must lead to reform so that such conflicts can be averted in the future.”

Members of Archie’s family told the UK media that his death was “barbaric,” and on Aug. 6 the Pontifical Academy for Life tweeted its support for them, saying: “When the life of someone is decided by a court, humanity is defeated.”

Auxiliary Bishop John Sherrington of Westminster, the lead bishop for life issues of the Bishops’ Conference of England and Wales, also expressed sympathy for the family.

“The recently hard-fought arguments in the courts about Archie’s ongoing treatment and care highlight again the need to find better ways of mediation by which parents and health care professionals can reach common agreements and avoid complex legal proceedings,” he said in an Aug. 5 statement.

Archie is believed to have been left brain-damaged by an online TikTok challenge that went wrong.

His mother found him at home in Essex April 7 by his mother with a ligature around his neck after Archie allegedly took part in a social media challenge called “blackout,” in which people choke themselves up to the point that they pass out.

Doctors concluded that the boy, who did not regain consciousness, was “brain stem dead” but Dance said he was able to communicate with her by squeezing her hand.

The case is the latest in a succession in which parents of gravely ill children have contested decisions to withdraw life-sustaining treatment made on the legal grounds that death was in the patient’s “best interests.

So far, the only child permitted to be taken overseas for treatment was Tafida Raqeeb, who in 2019, age 5, suffered a massive bleed on the brain and was transferred to Genoa, Italy, for treatment after her parents defeated the National Health Service in the High Court.

Tafida, now 7, remains severely disabled, but her condition has steadily improved and she is able to breathe without a ventilator and communicate with her parents.