UK Supreme Court Decision Underscores the Importance of Our Discussion on End-of-Life Decisions

Alfie Evans, a young boy from Liverpool, is now as famous in the UK as Terry Schiavo in the United States. And although their situations are different in some vital ways, they’re both a part of a larger social, ethical and political narrative — and lightning rods for controversy and opinion.

The right-to-die and death-with-dignity debates know no national or continental borders. Alfie and Terry have both passed on, but they’ve left many questions unanswered. Terry Schiavo wanted to pass. Alfie Evans’ parents didn’t want him to pass. What remains is a messy legal conversation that probably won’t see a clean resolution in our lifetimes.

But a new ruling by the supreme court in the UK might get us just a little bit closer.

What Exactly Did the Supreme Court Decide?

First: another story.

Alfie Evans became a news sensation in 2018 when his unnamed and untreatable neurodegenerative disorder reduced him to a vegetative state. Not one of his doctors expected him to recover. As a result, the boy was removed from life support on his doctors’ orders.

His parents objected. They wanted to keep their son alive, on support, until they could seek treatment elsewhere. Eventually, the supreme court intervened and ordered the doctors’ orders be upheld: Alfie Evans was to be allowed to die, peacefully, against his parents’ wishes.

This is a situation that, ideally, nobody should ever have to deal with. But in this case, the legal complexity and the resulting public uproar and debate were because of a simple fact: under UK law, parents must decide, before their son or daughter succumbs to unconsciousness, whether or not to sign an “advance decision to refuse treatment.” These legal documents are explicit in their level of detail.

In Alfie’s case, the supreme court ruled in Alfie’s doctors’ favor. We’ll get back to this.

For now, let’s get to the court’s even newer ruling.

In a recent “landmark” case, the UK supreme court ruled that, in cases where doctors and parents agree to remove a patient from life support, they no longer need to seek a court’s approval.

Together, all these stories and cases represent major milestones in the UK and the US concerning our right to die, our right to refuse treatment and the degree to which a guardian can appeal decisions already made by medical professionals.

In Terry Schiavo’s case, many feel that disagreements within the family delayed the merciful, quick and unpublicized death Mrs. Schiavo deserved, considering her condition.

In Alfie’s story, the Evans family tested the limits of the appeals system in the UK until the supreme court and the European Council on Human Rights both agreed there had been no illegal detainment nor cruel treatment of Alfie by his doctors, as his parents had argued.

And now, the supreme court has set a tone that will more heavily weigh doctors’ wishes in future cases.

Fallout and Consequences on Two Continents

The supreme court decision in the UK is expected to touch the lives of 24,000 patients within the National Health Service who are in critical condition, minimally conscious or irreversibly vegetative. Estimates that include nursing home populations are closer to 64,000. To recap, the ruling states that when parents and doctors agree on a course of treatment, or to remove a terminal patient from support, their case needn’t enter the court system.

Let’s compare this event in jurisprudence with the “Death With Dignity” debate within the United States. Doing so will help give some perspective to the larger questions and provide some guidance about where the world’s governments go from here.

In addition to Washington, D.C., there are five states in the US that allow euthanasia. All are relatively or decidedly progressive states, which is another way of saying territories that lean progressive are as likely to value wisdom from the scientific community, on climate change, for example, as they are to defer to end-of-life advice from trained doctors. Right-to-die laws are only possible in territories whose elected representatives take the scientific community seriously.

One would argue that our patchwork of compassionate end-of-life laws is a sign that we need to help our society grow more comfortable with having frank discussions about the end of life — especially when children are involved.

A most welcome consequence of the supreme court ruling would be a world in which we’re all more comfortable listening to doctors. The medical community has as much a hand in establishing trust with the general population as we do in choosing to trust that each and every doctor truly has our best interest at heart. With human error an undeniable factor, can we?

It’s a worthy goal, but one that requires the medical community to take steps to reclaim trust from patients who have been wronged. In Alfie’s case, doctors agreed his brain was “almost totally destroyed.” Not every case is medically clear-cut. But here, again, we return to the importance of frank, candid and legally binding conversations with doctors in every case.

The Causes of Mercy and Fiscal Responsibility

In a world where the availability and quality of healthcare is measured in Dollars and Pounds Sterling, the idea of the supreme court empowering tens of thousands of doctors to withdraw life support from unresponsive patients does come with some potential economical “benefits.”

One voice against the court’s decision claimed the total savings to the NHS, by halting treatment on unresponsive patients could amount to £2.4 billion per year. He argued that cost savings could weigh into families’ decisions to pursue euthanasia. Indeed, there are many complex financial questions — not the least of which are things like life insurance claims, some worth $1 million or more — that make these debates even more painful and consequential.

It’s right to worry over who makes final decisions like these. One hopes we’d defer to whoever has the most extensive training on the precious, razor-thin margin separating life and death. For that, we generally turn to doctors. Or else we give up a little bit of our merciful nature for our own peace of mind. Or else we keep paying a high price tag, oftentimes a literal one, for false hope.