On April 23, Alfie Evans, an infant afflicted with a devastating neurodegenerative brain disease, was removed from a life-sustaining ventilator in Liverpool’s Alder Hey Children’s Hospital over the strenuous objections of his parents. Five days later, he died aged 23 months.
Notwithstanding all the rumours and misinformation beclouding this intensely controversial case, there is general agreement that Alfie was severely handicapped. On Feb. 20, Justice Anthony Hayden of England’s High Court of Justice observed in his reasons for judgment in Alder Hey Hospital v Evansthat all the British, Italian and German physicians and consultants who testified in this case agreed that Alfie had irretrievably “lost the capacity to hear, see, smell or respond to touch, other than reflexively.”
Even Mariella Enoc, president of the Vatican’s Bambino Gesu Pediatric Hospital, acquiesced to this bleak assessment. According to a report by the Vatican News Service on April 19, she advised Pope Francis in a letter that, while pediatric specialists at Bambino Gesu were willing to treat Alfie free of charge, they would not attempt “to cure Alfie, since his condition is not curable, but to care for him. Possible treatment,” she specified, “could include basic hydration, and a tracheotomy to help him breathe.”
Note that there is no mention in this report of Enoc proposing to keep Alfie alive on a ventilator. Correspondingly, in submissions to Judge Hayden, Martin Samuels, a consultant respiratory paediatrician at the Bambino Gesu Hospital, agreed with pediatric specialists at Alder Hey that it was in Alfie’s best interests “to remove him from the ventilator and place him in palliative care.” Samuels said that in arriving at this conclusion, he had been guided by two key factors: namely, “the absence of any prospect of recovery” for Alfie and “the uncertainty of knowing whether Alfie is suffering.”
All but one of the medical experts who testified before Hayden concurred that continued use of a ventilator would not benefit Alfie. The lone dissenter was professor Nikolaus Haas, medical director of the department of paediatric cardiology and intensive care at the University Hospital Ludwig-Maximilians in Munich, Germany. He proposed to the court that for an initial cost of around 65,000 Euros (close to $100,000 CDN), his staff could admit Alfie to hospital for about 14 days of diagnostic tests and surgical procedures that would enable him to survive on a ventilator at home in the care of his parents.
In explaining why he favoured this approach, Haas testified: “Because of our history in Germany, we’ve learned that there are some things you just don’t do with severely handicapped children. A society must be prepared to look after these severely handicapped children and not decide that life support has to be withdrawn against the will of the parents if there is uncertainty of the feelings of the child, as in this case.”
Here, then, is the nub of the controversy: Who was right? Haas or all the other physicians who recommended removing Alfie from a ventilator?
Consider in this respect the views of Paul Ramsay, a Methodist theologian and professor of Christian Ethics at Princeton University. In a series of lectures entitled, “Ethics at the Fringes of Life: Medical and Legal Intersections,” that were published by Yale University Press in 1978, Ramsay propounded that “morally, it is never right to turn against the good of human life.” And on this basis, he deduced that abortion and euthanasia are always wrong, and that even the most handicapped and comatose of terminally ill patients have a right to nutrition, hydration and other forms of palliative care “even when this only improves their condition or adds meager life to their days.”
However, Ramsay also held that in the case of terminally ill patients “whose death is impending,” there is no reason to continue use of a ventilator or any other form of salvific treatment that “can only prolong dying.” To those who ask how anyone can know when the natural death of an infant or a comatose patient is impending, Ramsay replied “that this is a medical judgment and that physicians can and do determine – in human, no doubt fallible judgment – the difference between dying and non-dying terminal patients.”
Like Ramsay, the Catechism of the Catholic Church teaches that: “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate.” But how would this principle apply to Alfie? Specifically, would continued use of a ventilator in his case have constituted an “extraordinary” procedure that is “disproportionate to the expected outcome?”
Pope Pius XII dealt with such issues in an address to an International Congress of Anesthesiologists in 1957, when he was asked if it is obligatory for an anesthesiologist to use “a modern artificial respiration apparatus … in all cases of deep unconsciousness, even in those that are considered to be completely hopeless in the opinion of the competent doctor.” Pope Pius replied: ”Since these forms of treatment go beyond the ordinary means to which one is bound, it cannot be held that there is an obligation to use them nor, consequently, that one is bound to give the doctor permission to use them.”
A senior clinician at Alder Hey took care directly before disconnecting Alfie from the ventilator to warn his parents that it is impossible to predict precisely how long a child in Alfie’s condition might continue to live without a ventilator, but it may be measured “in minutes, in days or longer.” (See paragraph 23 of the judgment of the Court of Appeal in Alfie on April 25.) In the event, Alfie survived five more days and according to court testimony, he received throughout this period various forms of palliative care in Alder Hey, including nutrition, hydration, and “modest access to oxygen by two nasal prongs,” that was intended to keep him as comfortable as possible.
What, though, about the rights of Alfie’s parents? Given their deep love for Alfie and sincere concern for his well-being, should they not have had a right in law to veto the medical proposal to remove him from a ventilator?
Judge Hayden and his colleagues on the Court of Appeal rejected this argument on the ground that in Alfie’s case, the wishes of his parents, however well meant, were trumped in law by the best interests of the patient. In summation, Hayden indicated that for him, the decisive factor in determining Alfie’s best interests was the unanimous opinion of all consulted physicians “that it is unsafe to discount the possibility that Alfie continues to experience pain, particularly surrounding his convulsions. The evidence points to this being unlikely but certainly, it can not be excluded.”
In the end, Hayden wrote: “All this drives me reluctantly and sadly to one clear conclusion. Properly analysed, Alfie’s need now is for good quality palliative care. By this I mean care which will keep him as comfortable as possible at the last stage of his life. He requires peace, quiet and privacy in order that he may conclude his life, as he has lived it, with dignity.”
While well informed people can reasonably disagree about the wisdom of the course of treatment for end-of-life care that was decided upon for Alfie by his physicians and the courts, this case makes one point vitally clear: determining the best process of medical treatment and care for a terminally ill and comatose patient confronted with impending natural death requires the most careful and compassionate consideration by everyone concerned – parents, physicians, substitute decision makers and, if need be, judges alike.