Our world is getting quickly smaller as our technology gets more sophisticated and dominating. The week I am writing this has been hectic with meetings and phone calls in preparation for a seminar to be given by a panel from Our Lady of the Lake Regional Medical Center to a class of LSU law students. The seminar will be about case studies in medical ethics with emphasis on end of life issues. Panelists will be Coletta Barrett, Vice President of Mission at OLOL, James Reagan, Senior Bioethicist at OLOL, and myself, Chairman, OLOL Ethics Committee. As I was trying to pick out real cases from our past to illustrate how ethical decisions are made in our Catholic hospital, a news flash popped up from the internet: “Italian bishop: Refusal to let Alfie Evans come to Vatican hospital ‘beyond all human logic’ ” (CRUX, April 19, 2018).  

The story was about a 23 month-old British child who had an undiagnosed brain disease. His hospital, Alder Hey Hospital in Liverpool, wanted to remove his life support. His parents would not give their consent. In fact, his father, Tom Evans, flew to Rome after his own bishop, Francesco Cavina of Carpi, in northern Italy, arranged a meeting with Pope Francis. They met on April 18, and the pope gave Tom Evans his support, saying that “only God is the master of life.” The Vatican-owned children’s hospital, Bambino Gesu’, offered to admit the child and treat him. However, the hospital in Liverpool judged that it would be futile to do so and refused to release Alfie.  

The case went to a local court, which sided with the hospital in Liverpool. The Evans appealed, and the appellate court refused to allow Alfie to leave the country even after the Italian government had sent a helicopter over to pick the boy up. The case then went to the UK Supreme court that approved the hospital plan for withdrawing of life support (CRUX, April 20). Alfie’s parents responded to the Supreme Court decision saying, “Our son’s life is not futile. We love him. We value him. There are people willing to treat him and we have the state saying ‘It’s not worth giving him the chance.’ ”  

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Lawyers whom the family contacted at the British Christian Legal Centre planned an appeal to the European Court of Human Rights in Strasbourg. They stated Alfie’s case in this way: “Some people wrongly think that this case is purely about permission for Alder Hey to turn off Alfie’s life support. It is not. There are indeed times where life is, completely artificially, being sustained, and support of some kind must tragically be turned off. This is not Alfie’s situation.” A later news report from Paris on April 23 claimed that doctors were saying that “Alfie is in a ‘semi-vegetative state’ as the result of a degenerative neurological condition that medics have been unable to definitively identify.”  

It is strange that the Alder Hey Hospital would not allow the parents to transfer Alfie to the Bambino Gesu’ Hospital in Rome. Such transfers are common in the United States. On April 25, the case was reported on Fox News. The commentator explained that in many European countries, the law’s emphasis is on the right of a patient to die. The patient retains that right until he or she is pronounced dead. However, when the patient cannot speak for himself or herself, the right of decision-making about treatment goes to the hospital, not to the next of kin or a duly appointed surrogate. This is different from the U.S. where that right goes to next of kin or surrogate. The European law makes the hospital look like a feared “death panel,” quickly deciding not to treat seriously sick and dying patients so that the healthy and “treatable ones” can get more attention.  

Pope Francis apparently does not like the direction European health care is taking. After his meeting with Tom Evans, the pope asked his weekly general audience to pray for Alfie, saying that “the courage of this father is similar to the love of God for humanity; He does not resign himself to losing us.”  

Issues at the end of life can be very difficult. In preparation for our panel with the law school students, we read an article by two ethicists, Michael Panicola, Ph.D. and Ron Hamel, Ph.D. on “Enhancing Communication and Coordination of Care: A ‘Third Generation’ Approach to Medical Futility.’ ” It describes how, in the late 1990s clinicians and ethicists abandoned their attempts to define futility as a guideline for ending medical treatment. In 1999 the American Medical Association came out with “procedural guidelines” to resolve disputes over medically futile treatment. The State of Texas had even written some of them into law. However, this approach did not work very well in the Emilio Gonzales case in 2007. The “third generation approach” now favored in our hospitals is based on communication of the patient’s condition to everyone involved in the patient’s care, development of a care plan with the patient and/or family or surrogate, dependent on who has to make the decisions, and offering no treatments that will not be effective or will extend or increase the dying patient’s suffering. If there is lack of agreement from the patient or his surrogates, the hospital will assist in making alternate plans, including a move to another facility.  

It seemed that the British and European Courts had the last say on Alfie Evans. They did not. The little boy was removed from life support. Contrary to medical expectations, he continued to breath. At this writing, he is still breathing, assisted by a simple oxygen tube in his nose like many of our frail elderly use, hydration and some form of nutrition (CRUX, Associated Press, April 25). Sometimes medical science has to bow to the power of parents’ love, God’s mercy, a compassionate pope and the prayers of many Christian faithful.  

Now, three days later, Saturday, April 28, Alfie has died. What sense did his struggle make? I read, some time ago, a story of two missionaries in Haiti, a priest and a nun-nurse. One morning, the nun found a premature baby on her doorstep. She called the priest to come baptize and give the sacrament of the sick to the baby whom she knew was too premature to live. After the sacraments were administered, they took turns holding the baby who died an hour later. The priest voiced his thoughts aloud: “What meaning, what importance, did this poor little life have?” The nun smiled, hugged and kissed the dead baby, saying, “He was important enough to elicit love from two celibates.”  

Alfie’s short life and dying tugged at the world’s heartstrings for a week. His father Tom Evans posted on Facebook, “My gladiator lay down his shield and gained his wings at 02:30 … absolutely heartbroken. I love you my guy.” Requiescat in pace.  

Father Carville is a retired priest in the Diocese of Baton Rouge and writes on current topics for The Catholic Commentator. He can be reached at johnnycarville@gmail.com.