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.

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Kate Harveston is originally from Williamsport, PA and holds a bachelor's degree in English. She enjoys writing about health and social justice issues. When she isn't writing, she can usually be found curled up reading dystopian fiction or hiking and searching for inspiration. If you like her writing, follow her blog, So Well, So Woman.

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

  1. The thought that this is purely a scientific question about whether there are any effective medical treatments seems wrong. Medical expertise* as such is not the most relevant kind of expertise here. If it is just a matter of withdrawing medical treatment, then if the state is paying for it, physicians should have a greater say in it. The state shouldn’t be obliged to spend money on treatments that it could use more efficiently elsewhere. Euthanasia is different. That involves other questions of value which people in a pluralistic society can reasonably be expected to disagree on. Doctors on this question are as much laypersons as anyone who is not a philosopher who specifically studies these topics. Is life just about brain activity? Is the self just the mind? A “let the doctors decide” mentality underestimates the extent to which such end of life decisions are fundamentally personal and value driven. The doctor seems to be the last person who should have a say in this. The role of the doctor is just to lay out the feasible options and carry them out if a) the state or family is willing to pay him and b) it is not obviously unethical**

    *Note that I am saying this as the child of a renal physician and an emergency physician, the brother of another doctor and a forensic geneticist who is married to a paediatrician.

    **With the caveat that “the money being used to treat this patient could be better used on someone else” is not among the ethical considerations that count towards unethicality even if it is true. By that I mean killing someone else and harvesting their organs, or the family obviously wants to euthanise grandma to collect the life insurance money or something. While it might from a utilitarian standpoint be suboptimal for money to be spent on people nearing the end of their life, even if utilitarianism is true, we don’t want doctors to be utilitarians.

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  2. Humans always struggled with mortality but we tended to do a better job at discussing it when it was an ever present part of life. The Victorians were great at talking about death because it was common. At least in the developed world, funerals are rare events for many people in the present compared to other times in the past.

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  3. My mother passed away last year. Hydrocephalus.

    She was being prepped for brain surgery when test revealed that -in her current conditions- the proposed surgery would not have successful. The medical solution was for a more radical surgery, several weeks in Intensive care, and then, if she recovered of that, then to have the surgery she was being prepped for.

    The alternative was for palliative care, and let nature take its course. The decision was mine.

    My mother died peacefully 24 days later.

    I don’t see what good would have come from having the legal system intervene

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  4. 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.

    “Many” feel Ms Schiavo’s became the political prop of one of our two parties, pandering for what Andrew Sullivan would have called the Christianist vote

    From the linked article:

    Though the courts sided with Michael Schaivo, the state legislature passed a bill, known as Terri’s law, giving Florida Gov. Jeb Bush authority to prevent the removal of the feeding tube.

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  5. I think this is one of those issues that is a Culture War lightning rod for two reasons.

    One, the obvious one, is that a fundamental, high-stakes conflict of values is in play. It’s literally a matter of life and death.

    The other, slightly more subtle one, is that the unavoidable involvement of impersonal institutions (the state, hospitals, et c.) raises the fear that your life maybe be ended [1] in some horribly tragic situation by people you don’t trust for ends you disagree with. “Terri’s Law”, which @j_a brought up. is an extreme example of that.

    [1] Or, far more personally horrifying to me, extended.

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