The parents of a two-and-a-half-year-old girl find themselves in a thoroughly unenviable position. Their daughter, Alta, is ventilator dependent. She is being cared for in a small room in Manchester Royal Children’s hospital. Her prognosis gives her two more years to live, but the NHS Trust want to remove the support even though they accept this will result in a much sooner death.
Avraham and Chaya Fixsler, of Israeli and American citizenship, have fought with everything they have over the past few months to preserve the life of their daughter, as you or I would. They raised the money to transfer Alta to their Jewish homeland where she could continue treatment in hospital and then be buried in accordance with their religious beliefs and practices, gaining the support of the Israeli Health Minister. They received the backing of American politicians and a visa for her to be transferred to the US. They have a medical team on standby to move her back home in England. They have done everything within their power so she can remain alive.
They took their case to the courts, challenging the NHS Trust’s decision in the High Court, Court of Appeal, and European Court of Human Rights. But despite having everything in place to continue treatment without it costing the NHS a penny, the courts have denied them what they believe is best. The Fixslers were left to watch and wait until the day when the hospital intentionally removes the life-supporting treatment and Alta dies.
The courts are required to have the child’s welfare as their “paramount consideration” under the Children Act 1989, which includes the “best interests of the child” test. Yet, the legal intent to protect vulnerable children at risk of being abused or neglected has evolved into a legal precedent which now includes end-of-life scenarios and overrides our long-standing principle of parental primacy. As Alta’s parents found out, end-of-life clinical paternalism is more authoritative to the courts than the heartfelt desires or religious convictions of the parents in determining the young child’s interests. Lord Justice Baker in the Court of Appeal said that he “deeply regrets” that he could not do more to help Alta’s devoted parents – whom he could not criticise – but that “the law required” him to dismiss their appeal.
How tragic that the Fixslers’ views and values about the sanctity of life can be dismissed when a court decides what their child hypothetically ‘would have wanted’. How tragic that they have so far been denied taking their daughter to a place of central religious importance to them to enjoy two more years together. How tragic that the clinical assessment of the child’s pain neither has to be “unbearable” or “intolerable” for the application to withdraw treatment to succeed in the courts. The courts know that ‘suffering’ is an extremely subjective concept disputed by medical experts.
But there’s still time for the Manchester Children’s Hospital to relent and allow the Fixslers to choose how best to care for their young daughter in her condition. All hopes are on the clinicians changing their minds now.
– by Elizabeth Francis