The images of 23-month-old Alfie Evans many of us have seen on social media capture something of his humanity – a fragile, yet beautiful humanity, which his parents fought with such courage to preserve, even as judge after judge upheld the High Court’s ruling that continued ventilator support was not in Alfie’s “best interests”.
Alfie’s life support was finally removed by court order on Monday of last week, though he surprised many by continuing to breathe for another five days (doctors had previously said he was “one hundred per cent dependent on ventilator support”). But the courts remained intransigent, and continued to reject Alfie’s parents’ bid to allow him to be taken to Rome for further treatment. Finally, early last Saturday – exactly 500 days after he was first admitted to Alder Hey hospital in Liverpool – Alfie Evans died, not at home, as his parents had wished, but in hospital. Whatever Alfie’s “best interests” were, it is difficult to see how this could have been it.
Alfie’s prognosis was, of course, very poor. Much has been made of the fact that there was no diagnosis, and this claim was susceptible to some overstatement. “No diagnosis” did not mean that the hospital had no idea what was wrong with Alfie; the extent of the irreversible degeneration his brain had suffered was clear, even if the underlying cause was not. But there remains a suspicion that the clinicians and the judges were concerned not only with the merits of further treatment for Alfie, but with whether the life of a severely disabled child was worth living.
The Church’s teaching on end-of-life decisions is often misunderstood. It does not demand that doctors should always do everything medically possible to keep a sick patient alive. It directs us to assess the worthwhileness of treatment – whether, for example, it is futile, in which case it could be withheld. Even life-sustaining treatment could be withdrawn, if it is excessively burdensome to the patient.
Back in February, when the High Court first ruled that Alder Hey could remove Alfie’s life support, it might have appeared that the judge was simply making a judgment about the futility of continued treatment. However, Mr Justice Hayden chose to specify that he was rooting his conclusions within the Royal College of Paediatrics and Child Health’s framework for withdrawing life-sustaining treatment for children, a document which provides seven possible justifications for doing so. In particular, he singled out the following justification: “Lack of ability to benefit: the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life.”
Let us be clear about what that means. To suggest that continued ventilation is futile because Alfie cannot “benefit from continued life” is, in fact, to make a judgment on the worthwhileness of Alfie’s life, albeit rather circuitously. This indicates the extent to which utilitarian thinking has come to dominate our medical ethics. The Christian position is that no one has the right to judge the worth of another human life. Once we allow that some human lives are more worthwhile than others, we are in very dangerous territory.
But who should have the right to judge the worthwhileness of a particular treatment? Under English law, the “best interests” of the child are defined by the courts, not the parents. In the wake of the Charlie Gard case last year, one lawyer, writing in the New Law Journal, suggested that the “unavoidable, yet understandable, subjectivity” of families means they cannot be the “final arbiters” of their sick children’s best interests; indeed, parental views must be checked for their “emotional colouring”. Such is the condescension of the learned.
No doubt, parents do not always make the best decisions for their children. And some decisions parents make may allow for a wide range of reasonable disagreement (“Should my child take up rugby?” “This school or that?”). Yet the parent-child relationship deserves special protection, and British law rightly demands that a high bar be met before the state can take children from their parents.
This high bar does not apply to court proceedings on the withdrawal of life support for children. When disagreements between parents and doctors go to court, the court’s task is to make a decision based on an “independent and objective judgment in the child’s best interests”. However, there is a big jump from the judgment “treatment is not in his best interests” to “treatment is not in his interests and therefore not lawful”.
A further problem with a purportedly “objective” judgment of “the child’s best interests” is that, coming from a more emotionally detached standpoint, it is more likely to be risk-averse. Yet a loving, passionately involved but reasonable parent might accept certain risks in exchange for possible benefits for their child. It is not clear to me that the risk to Alfie’s health of being transported to Rome in an air ambulance in order to receive continued treatment was so great that to have decided to try it would have been gravely unreasonable.
The full details of this case have yet to emerge. But it seems to me that the old adage “hard cases make bad law” could here be turned on its head. When parents with reasonable disagreements with their child’s doctors have no right to take their child to other doctors for treatment, and when medical guidelines allow doctors and judges to make judgements on the worth of a life, the sad reality is this: that bad laws make hard cases.
Michael Wee is the education officer of the Anscombe Bioethics Centre, a Catholic academic institute based in Oxford.