An internationally-respected Catholic bioethics centre has called for urgent reforms of UK law after doctors ended the life of a brain-damaged 12-year-old boy against the wishes of his parents.
Archie Battersbee, 12, died in the Royal London Hospital at 12.15pm on Saturday following the removal of artificial ventilation and other treatment at 10am the same day.
The death of the youngster, who is believed to have been left brain-damaged by an online Tiktok challenge which went wrong, was described by his family as “barbaric”.
Anscombe Bioethics Centre, an Oxford-based institute serving the Catholic Church in the UK and Ireland, said the case demonstrated a serious lack of respect for the rights of parents and severely-disabled patients.
It urged the British Government to “urgently bring into force” sections of the Health Care Act 2022 that commit Ministers to investigating the possibility of drafting a “Charlie’s Law” to restore parental rights and to allow seriously ill children to be taken abroad for treatment at reputable health institutions overseas.
Peter Williams, spokesman for Anscombe, said: “It is with great sadness that we hear that Archie Battersbee has passed away.
“It is a death which will be made all the harder to bear for Archie’s parents as it results from the withdrawal of life-sustaining treatment against their strenuous objections.
“This decision has come after four hearings in the High Court, two in the Appeals Court, two decisions by the Supreme Court, one by the European Court of Human Rights and an intervention by the United Nations Committee on the Rights of Persons with Disabilities.
“In law, Barts Health NHS Trust has prevailed over the parents of the child; but this is surely 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.”
He continued: “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 seems clear that there are serious problems with the current clinical, interpersonal, ethical, and legal approach to these situations.
“The Anscombe Bioethics Centre has drawn attention to what seems to be a systematic lack of respect in English law for the role and responsibilities of parents in such cases. We have also drawn attention to persistent failures in clinical practice in relation to the dignity of people who have profound disabilities.”
Mr Williams said Anscombe therefore called upon Health Secretary Steve Barclay to act urgently to bring into force section 177 of the Health and Care Act which demands a review into the causes of disputes between persons with parental responsibility for a critically ill child and those responsible for the provision of care or medical treatment for the child as part of the health service in England.
The section also requires the Health Secretary to publish and lay before Parliament a report on the outcome of the review within one year beginning with the date on which this section comes into force.
Mr Williams added: “The tragic case of Archie Battersbee must lead to reform so that such conflicts can be averted in the future.”
Archie was found at home on April 7 by his mother, Hollie Dance, with a ligature around his neck after allegedly taking part in a social media challenge called “blackout”, in which people choke themselves up to the point that they pass out.
Doctors at the Royal London Hospital have concluded that the boy, who has not regained consciousness, is “brain stem dead”.
But Ms Dance legally contested their decision to withdraw his ventilation and harvest his organs on the grounds that he is able to communicate with her by squeezing her hand and that his heart was still beating.
A judge at the High Court in London ruled in favour of the doctors in June, deciding on the “balance of probabilities” that it was more likely than not that the boy, from Essex, south east England, had died.
The Anscombe Bioethics Centre, an institute serving the Catholic Church in the UK and Ireland, later issued a statement critical of the judgement.
“It seems extraordinary that questions of life and death should be matters of a balance of probability rather than determination beyond reasonable doubt,” it said in a statement. “No one would suggest burying someone who was ‘more likely than not’ to be dead … ‘Very likely dead’ is not dead enough.”
Earlier in the year, the Health and Care Bill was amended to pave the way for a “Charlie’s Law” following public concern over the treatment of Charlie Gard, Alfie Evans and other gravely sick children.
Proposals tabled in the House of Lords sought to make it easier for parents to be part of the life-or-death decisions taken by doctors treating their children.
Envisaged measures include a new system of mediation, a right to additional medical opinions, and to legal aid if the cases end up in expensive battles in the courts.
Parliamentarians also want to prevent judges from making orders stopping parents from taking a child abroad for treatment at any esteemed medical institution if there is no significant risk of harm involved.
So far, the only child permitted by the courts to be taken overseas for treatment in recent years is Tafida Raqeeb, who in 2019, aged five, suffered a massive bleed on the brain.
She was allowed to be transferred to Genoa, Italy, for treatment after her parents defeated the Barts Health NHS Trust in the High Court.
Tafida, now seven, remains severely disabled but her condition has steadily improved under the care of a dedicated medical team and she is able to breathe without a ventilator and communicate with her parents.
In February, her mother, Shelina Begum, briefly left her bedside to travel to London to launch the Tafida Raqeeb Foundation, a new charity aimed at building a hospital in Britain for the care brain-damaged children.
Her plan is to raise funds to build a £25million brain injury rehabilitation centre in Britain for children who are not offered the treatment on the NHS. Tafida’s family say £2million has already been raised and are appealing for funds.
The hospital will include a paediatric neurological rehabilitation centre capable of accommodating at least 20 young patients and which will treat children after a serious accident or illness. The foundation intends it to be a world centre of excellence.
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