Withdrawal of medical treatment from a child
Withdrawal of medical treatment has been an issue in the news recently, with the incredibly sad case of Archie Battersbee being heard in the Supreme Court and the subsequent ruling that his life support machine should be turned off.
This case however involves a younger child, J, and her identity, as is usual in the Family Courts, has remained private, even despite the hearing itself taking place in ‘Open Court’ (where the names of parties are, conventionally, known to the public).
The case, heard on 16th and 22nd August 2022, concerns J, a 6-year-old girl born in Lebanon. J and her family moved to the UK as Syrian refugees in June 2016. Since December 2017, J began to suffer from seizures, the symptoms of which included eye-rolling, regression of her motor and cognitive skills, and loss of speech and eye contact. The seizures became increasingly worse until July 2019, when J was reasonably well. In September 2020, J required a further 2-week hospitalisation due to a chest infection, and again in December 2020, with a longer stay in an intensive care unit in January 2021 when J had contracted Covid-19.
Throughout 2021, J’s hospital records showed an increased reliance on hospital support, with each admission being attributable to respiratory failure. In December 2021, J suffered a cardiac arrest.
J has undergone a number of medical examinations and it was discovered that she suffered from an inherited genetic defect of the NRROS gene (that is, the negative regulator of reactive oxygen species, which accounts for each of her respiratory admissions).
In August 2022, on the 18th J was discharged home to her parents’ care, however only 2 days later, she was readmitted to hospital with ‘repeated apnoeic episodes’ (simply put, she had a number of instances where she stopped breathing).
The Court had evidence before it from the Ethics Advisory Group that as of May 2022, J “does not respond to the world around her. She gives no indication of feeling pain, but this is not certain, and that she is feeling pain but not able to relate that cannot be ruled out. The best-case scenario...is that she is incapable of experiencing anything including pleasure or pain. The worst-case scenario... is that she feels pain but that this cannot be detected by all of the usual mechanisms as she appears to give no response at all” [§22].
It is recorded by the Court that J’s Father “believed that J has a greater level of awareness than the doctors truly understand” [§25]. Indeed, the Cafcass Officer concluded that J did have soe awareness of her parents’ presence in a manner that she experienced as comforting, but “could not root this in any evidence other than to describe an essentially primal connection” [§27].
The parents ultimately sought for home ventilation to be provided for J, in order that they could care for her at home, however, the medical evidence was clear that there was no prospect that home ventilation could achieve any medical benefit for J.
Hayden J considered the relevant case law, including of course Art. 2 ECHR, but additionally gave consideration to the case of Raqeeb & Ors  EWHC 2530 (Fam), the facts of which Hayden J outlined that he had never since encountered in any case before him. In Raqeeb, it was held by McDonald J that life-sustaining treatment should continue, as the patient was not in any pain, was medically stable, the burden of treatment to keep her in a conscious state was low, and there was a responsible body of medical opinion that considered that she could and should be maintained on life support.
Very sadly, J was not in similar circumstances. J’s parents are said to have agreed in their own evidence that J probably experiences a degree of residual pain, in addition to having lost the ability to exercise any control over her own body, her ability to communicate, and having the most limited awareness.
The Court therefore concluded that ventilation was not in J’s best interests.
As with all matters coming before the Family Court, in any type or stage of proceedings, it is the child’s best interests and the child’s welfare that are the Court’s paramount consideration. Sadly, in this instance, the determination of the Court was that it was not in J’s best interests to continue treatment given the level of pain and suffering she was continuing to endure through her repeated seizures and hospital admissions.
In J’s case, her family have done their utmost to keep her identity private, with court orders having been made to that effect also. This is a lesser-known case than that of Archie Battersbee, despite them occurring within weeks of each other, and it is likely that this is because of the emphasis on privacy afforded to J by her family and the Court.
Professionals often discuss transparency in the Family Court arena. Decisions such as this do outline how privacy can be maintained, open and transparent justice can be obtained, and these desperately unfortunate cases can still be dealt with sensitively by all involved.
The full decision can be accessed here.