“Sometimes (negatively) parents do not act in the best interests of their children, and sometimes (positively) they act against those interests,” Iain Brassington, a lecturer at the University of Manchester law school, writes today at the blog of the Journal of Medical Ethics. “Sometimes this is because the parents have been surrounded by, been given poor advice by, and been taken advantage of by, the unscrupulous and the unhinged. I wonder whether exactly that has happened in the [Alfie] Evans case.”
That is, Brassington wonders whether the pediatricians of Bambino Gesù Pediatric Hospital in Rome are unscrupulous or unhinged.
The immediate wrong in the Alfie Evans case is that, after the boy’s parents, Tom Evans and Kate James, got second and third opinions and decided to transfer him to the care of a hospital in Italy, the Liverpool hospital to which they had originally taken him wouldn’t release him. It’s not as if Evans and James intended to hand their son over to witch doctors. We’re talking about Bambino Gesù, by some accounts the largest children’s hospital and pediatric research center in Europe.
After the boy had already been admitted to Alder Hey Hospital in Liverpool, Evans and James sought opinions from doctors abroad. From Rome and from Munich they received treatment plans that differed from Alder Hey’s plan to remove artificial ventilation immediately so the child could die. The prognosis from none of the three groups of doctors — Liverpool, Rome, Munich — was rosy. To its credit, Bambino Gesù pointed out the risk that Alfie could die in transit to Italy.
Both in the courts and in the media, opponents of the Bambino Gesù plan shifted their ground. Their primary contention was that Alfie’s brain disorder had dimmed his consciousness to the point that he was no longer living a meaningful life and had no prospect of ever doing so — and that in any case he was near death. But then they cited as unacceptable the risk that he would die in the air ambulance that Bambino Gesù had readied for his transit from Liverpool to Rome.
Moreover, representatives of Alder Hey had already told a court that his death on their removal of his life support would be fast. So, with respect to life expectancy, even in the worst-case scenario for the Bambino Gesù plan, the outcome would not have differed significantly from what the Liverpool doctors had pronounced optimum under the circumstances.
Opponents of the Bambino Gesù plan also argued that, since it was “highly unlikely” that Alfie felt pain but not impossible, it was better to err on the side of caution and assume that he did. They adduced the stress of air travel and of the surgery in Rome, as if the Italian pediatricians had no anesthesia or competence in pain management. Of course, if Alfie did feel pain, that would raise the question whether he had sufficient awareness for his life to be meaningful after all in the judgment of those who said that, because he didn’t, it wasn’t.
The Liverpool doctors and the judges who ruled on the matter implied that they were observing a sort of Mendoza line: It would be against the patient’s best interest to treat him if his consciousness had fallen below and was unlikely ever to rise above it. The Liverpool doctors drew the line higher than the Italian doctors did. Alfie’s parents agreed with the Italian doctors, who proposed that, if they failed, the Munich doctors could try and that, if they failed, the child could be sent home to die there instead of in a hospital.
As in the Charlie Gard case last year, the judges agreed with the British doctors and ruled that what the foreign doctors proposed was against the patient’s best interest. “We realised that cases like this would keep happening until the law was changed,” Connie Yates, Charlie’s mother, posted last week on Facebook, commenting on the Alfie Evans controversy.
Two hospitals abroad had offered to treat Charlie Gard: Bambino Gesù in Italy and, in the United States, New York–Presbyterian, a research hospital affiliated with Columbia and Cornell. British judges barred his transfer to either. Yates and Charlie’s father, Chris Gard, are working with medical and legal experts and with parents in similar situations to revise the relevant U.K. law.
“Both cases,” Charlie Gard and Alfie Evans, “highlight the problem of defining ‘best interest’ and of trying to discover it through the court system,” Kenan Malik writes in the Guardian. “It is not clear, for instance, that it would have been against Alfie Evans’ best interest for him to have received palliative care in an Italian hospital, as his parents wanted, rather than in Liverpool.” (Whether or not “palliative” is the best characterization of the care that Bambino Gesù proposed, the point that it’s not clear that Alfie’s transfer to it would have been against his best interest stands.)
“The courts need both to acknowledge the difficulties in knowing what constitutes best interest and be particularly cautious about sanctioning death,” Malik continues. “At the same time, we need new means of resolving such cases, rather than hoping, as we do now, that institutions designed to provide justice in criminal cases can also help unpack delicate moral conundrums.”
Malik introduces the distinction between ensuring a child’s best interest and protecting him from harm. The latter is the criterion that a social worker must meet, for example, if he seeks to remove a child from her parents’ care. It might not be in her best interest for her mother to make her sandwiches with white bread, but that would be insufficient cause for the state to claim her as its ward. When the state deliberates whether to depose parents as their child’s proxy in medical decisions, the need to protect her from harm might appear to be the more reasonable criterion, or at least the one likely to meet with a broader consensus. But the logic-chopping whereby “best interest” has come to mean whatever a judge deems it to be in any given case could easily be put in service of an argument that failure to ensure a child’s best interest constitutes harm.
In the background of this debate over the question of who should decide which treatment plan to choose when parents have sought multiple expert medical opinions is the case of Ashya King, a five-year-old boy whose parents defied authorities in Britain, removed him from the hospital in Southampton, and took him to Prague for proton-beam therapy. Three and a half years later, Ashya’s doctor in Spain says that “he is in remission and there is no sign the tumor will return.”