The world is mourning for Alfie Evans, a British two-year-old who this weekend passed away at Liverpool’s Alder Hey Children’s Hospital.
Alfie had an extremely rare neurodegenerative disease. After doctors determined it was best to take the boy off ventilation and to allow him to, “pass away peacefully” in opposition to Alfie’s parents.
The doctors fought for (and were granted) legal control of Alfie’s life, and took him off life support.
Alfie’s parents, Kate James and Tom Evans, fought the hospital tooth and nail. After they procured Italian citizenship and a spot at Rome’s Bambino Gesu hospital (as well as the support of the Pope) for their son, they asked the courts to allow them to travel with Alfie to Italy, transferring him out of British care. That petition was refused.
Alfie defied expectations. Doctors suggested that he would pass away immediately once taken off ventilator support. But the toddler lived for nearly a week without that support—and during that time, drew the prayers of supporters from around the globe.
Rights of the parent
This case was, in many ways, a simple parental rights issue. If parents believe their son should get further treatment and have the means to do so, as Kate James and Tom Evans did, how could the court possibly refuse them the right to care for their own child?
Shouldn’t the presumption be that a child’s best interest is to live, not to die — especially when there are resources being made available to pay for the child’s further treatment and care, at no cost to the British Crown?
The legal arguments surrounding the hospital’s ability to act in loco parentis and assume control over Alfie’s care pointed out stark differences between Alfie’s parents and his doctors’ beliefs surrounding his condition.
Doctors believed Alfie was dying. He had been on life support for over a year, and they said that during that time had been slipping deeper and deeper into a semi-vegetative state.
Alfie’s parents, however, believed their toddler was only ill, and that they needed time to explore further treatment options.
Doctors saw no chance for recovery. According to testing they had conducted over the past 16 months, Alfie would not respond to treatment options available to some others with neuro-degenerative diseases.
Furthermore, the hospital said his brain scans showed, “catastrophic degradation of his brain tissue” and that further treatment was not only “futile” but also “unkind and inhumane” and insisted on taking the toddler off ventilation.
Alfie’s parents, on the other hand, believed this was an assumption which should not go unchallenged—one which did not appreciate the mysteries and unknowns surrounding Alfie’s condition. They wanted to do more testing before giving up and hoped to give him another chance in Rome.
We all have felt this case strongly. A child’s life was at stake. Parental grief was involved. Any of us who have borne, birthed, and loved a child feel something primal and instinctual within to recoil at the prospect of “pulling the plug” on a child’s life.
But amid the rhetorical passion of the moment and the heat of our own instincts and beliefs, we must remain humble. There are many things in this case which we cannot presume or know fully. We can only see darkly, in the half-lit light of the internet sources available to us.
It could be that the British government and Alder Hey hospital were on a power trip, and cared more about control than they did about Alfie Evans. That is, at least, what many parental rights advocates suggested last week.
But, on the other hand, it is important to remember that Alfie was in Alder Hey’s care for over a year. The hospital’s doctors and nurses treated his condition for days, weeks and months at a time.
They gave him medicine and various treatments for his epilepsy and observed his condition day in and day out. It seems presumptuous to assume that they had no relationship with or empathy for Alfie, that they’re cruel humans who only wanted to see him suffer.
Their care may have been deeply unfounded, misdirected, or wrong. But that does not mean it wasn’t well-intentioned.
The question that remains
The question that we cannot easily answer from afar is whether the hospital Alfie off of life support because they believed he was dying, or whether it was because they deemed his life was, “not worth living.”
This is where the ethics of Alfie’s case gets so tricky. Alfie’s tenacious hold onto life over the past few days, despite the withdrawal of life support, only emphasizes further the mystery and complexity surrounding the question of knowing what is right, just or even likely.
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