From the calm funeral earlier this week, you wouldn’t know that Alfie Evan’s last few days of life were surrounded by loud protests and emotional turmoil all over social media.
A 23 month old toddler, Alfie Evans died two short weeks ago when his life support was withdrawn per court order, over and above his parents’ passionate and emotional pleas to keep them. Alfie suffered from a neurodegenerative disease and since December 2016, was hospitalized at Alder Hey Hospital in Liverpool, connected to a ventilator and receiving nutritional support. The medical consensus was that he would never make any meaningful recovery as CAT scans revealed that most of the white matter of his brain had been destroyed.
Since Alfie would never make any meaningful recovery, the hospital recommended that all life sustaining measures be withdrawn to allow him to ‘die in peace.’ Alfie’s parents, Tom and Kate acknowledged the grim prognosis but argued that so long as Alfie could live, his continued life is a goal in and of itself that should be pursued.
During the entire ordeal, people on all sides – protesting near the hospital and all over social media – were very upset and very opinionated.
What was the right thing to do in this sad and complicated case?
On the whole, we want the government to intervene and protect those who cannot care for themselves, including the elderly, the incapacitated, and particularly children. We expect the authorities to look out for children’s best interests when others cannot or do not.
That said, as a society, we embrace the diversity of parenting styles. While some parenting styles are more in line with our own and others differ, we acknowledge that parents are within their rights and responsibilities to act within a broad spectrum of options.
But even this spectrum has its limits. We will not stand for a parent beating their child, arguing that “it builds character” or tolerate abandoning a child for them to “learn survival skill.”
It’s important to understand Alfie’s story within this framework. It’s appropriate for a hospital to ask the court for guidance in assessing whether parents decisions are still within that acceptable spectrum, when they start to approach its edges. Physicians and parents might disagree as to what constitutes a child’s best interests. Normally, the court inserts itself into those cases where parental conduct and decision deviates so significantly from that which is deemed acceptable, that they must be stopped.
If parents refuse simple, straightforward but lifesaving surgery for their daughter, a court may ‘speak up’ on behalf of the young girl and revoke the parents’ decision making rights to protect her. Similarly, a court may prevent parents from utilizing an unproven therapy for a terminally ill child when the burden of pain and suffering significantly outweighs the likelihood of a positive outcome.
The challenge is how to define the boundaries of that which is acceptable.
In Alfie’s case, the facts weren’t in dispute. While lacking a precise diagnosis, it was clear that Alfie’s brain was largely not functional and that no known means of medical science could change that reality. There wasn’t much debate either, that with his current support (respiratory, nutritional, etc.) he would likely continue to live for some time and that he was experiencing no pain or suffering.
Alfie’s parents, Tom and Kate argued that so long as Alfie could live, they want him to continue living. Many at the hospital felt that since Alfie had no chance of recovery, it wasn’t dignified to continue treating him just so he could linger a little while longer until his death.
So how do we know what’s the right thing to do?
Importantly, this is not a medical decision.
Determining what’s best for Alfie depended on medical facts, but there is nothing about deciding what constitutes his best interest that grants physicians more moral authority than anybody else. These aren’t questions of facts and math – which are the domain of expert scientists and physicians – but issues of ethics and morals. Treating physicians may offer their perspectives and opinions, but it’s important to keep in mind that they are just that – opinions and perspectives based on their particular set of values; nothing makes them more right or wrong than yours or mine.
When it comes to issues of values or ethics, we each have our own approach and might look for guidance in those who we view as projecting our particular understanding of right and wrong. These are tough questions and figuring out the contours that separate right from wrong is not always easy to describe. Consulting faith leaders, philosophers, and ethicists for guidance makes sense because blindly accepting an opinion simply because it was issued by doctors is inappropriate. Criticizing Alfie’s dad for not merely going along with the hospital’s approach completely misses the point that physicians hold no moral high ground on questions of values and ethics.
The real issue is that Tom and Kate’s argument – that life in and of itself is a good thing and should be protected – was summarily dismissed. Their argument that life is simply worth living was deemed so dangerous and so toxic that their parental rights were suspended. Alfie’s parents could no longer make decisions about his treatment because their position was deemed harmful. The court effectively argued that instead of protecting their son and promoting his health, Kate and Tom’s argument that just being alive is a value in and of itself was not only wrong, but so harmful that the court needed to intervene and protect Alfie from its ramifications.
We have come to a point where life as a value in and of itself was deemed not only wrong, but dangerous. And that might be one of the most infuriating aspects of this story. Because a two year old dying isn’t tragic enough.