The central question in the heart of the heartbreaking case of the serious British infant Alfie Evans is "Who decides?" The wishes of Alfie's parents for their care have been rejected by the hospital and the British courts, and a very ugly public debate has followed. Should these more intimate medical decisions of life and death be made by the omnipotent state health system of the United Kingdom or its beloved parents?
The details of the case have reached the coasts of the United States in recent days. The 23-month-old boy was admitted to the hospital in December 2016. Alfie has a undiagnosed degenerative brain disease . British doctors have argued that their condition will not improve and that they should be removed from life support. With the approval and support of Pope Francis (and at no cost to the United Kingdom), Alfie's parents wanted to take him to Rome to receive treatment in the hope of a miraculous cure or, at least, a more humane end for Alfie. Instead, the court ordered that the child be removed from life support, which was terminated on Monday.
One of the judges in the case, Lord Justice McFarlane, in ruling against the child's parents said: "The only determining factor is Alfie's best interest." Of course, the child's best interests are paramount, but with all due respect to Lord Justice, there is a difference of opinion about what Alfie's best interests are. The question still stands: who should make that determination: a judge previously unknown to Alfie or to the mother and father of the child?
When the state usurps the powers that would be best to leave those closest to the situation, we end up with a real mess. Police are stationed in front of the hospital in military training for fear that a deranged person may assault the facilities in an attempt to "rescue" Alfie. Big brother looms when social media users have been notified by the police that their messages are being monitored. Desperate parents turn to a Facebook campaign for their child's life. The Twitter wars are full of accusations and memes that compare the different treatment of the two mates Kates (as in, Kate, the Duchess of Cambridge and Kate, the mother of Alfie).
Even doctors have different opinions about the details of Alfie's diagnosis, and as is often the case, a second opinion yielded a different prognosis from the original. Although it is impossible to comment on the medical details of the case, we all know people who have survived a terrible prognosis for a long time, and we all know the limits, fallibility and uncertainty of medical science.
Look no further, the famous British physicist Stephen Hawking, who was told at the age of 21 that he would live only two years. Two decades later, in 1985, he was about to die, but his wife refused to take life support and he went on to live another 33 years. Sometimes I needed a respirator to breathe. Apparently, the British government allowed its incredibly expensive medical care, including 24-hour nursing, to be paid for by a US foundation. He died at a decently mature age of 76.
Alfie's case should also be considered in light of the fact that we live in an era of medical systems squeezed by costs and a lower respect for the value and dignity of life human This combination is potentially dangerous and contributes to the visceral reaction to the denial of freedom in this case.
Although the British system has prohibited Alfie from being transferred to the Bambino Gesu Hospital in Rome, imagine if this transfer had been allowed. The staff of the Catholic hospital would have accompanied the child and his parents through his tragic experience in a way that respects the humanity of this young child and the sacred nature of the family unit. There, in Rome, far from the forceful utilitarian ethics that they found in a state hospital system, Alfie would win or the Evans family would reach the peace necessary to say goodbye.
He even stipulated good will on all sides and By granting that other parents in a similar situation can decide fairly about a different course of action for their child, these decisions should be made by loving parents and not by the powerful state and paternalistic.