In debates about assisted dying, remember those who have lost the ability to choose

25 November 2024, 11:43

Parliament will vote this week on a momentous issue: should assisted dying be legal?

They will be thinking about patients who are terminally ill but fully capable of deciding for themselves. In these cases, the ethical situation is clear: out of respect for these patients’ autonomy, and out of concern for their suffering, we should empower them to die at a time of their choosing.

Yet an equally important group of patients is often forgotten in these debates. These are patients who are incapacitated—who have lost the ability to choose for themselves. After a stroke or a brain injury, people sometimes enter what is called a "prolonged disorder of consciousness."

They have periods of wakefulness and sleep, but when awake they are either unresponsive or their responses are very limited. They cannot communicate their wishes; in the eyes of the law, they are not competent to make decisions.

Any of us could fall into such a state at any moment—and many of us, on reflection, would not want to live for years or decades like this, unable to communicate with those around us. Perhaps we underestimate the quality of life possible in such states—but, that said, there are still cases in which all of a patient’s carers and relatives are in complete agreement that the person would want to die.

And the law makes room for this: when the patient’s legal decision-makers all agree it is in their best interests to be allowed to die, this can happen. But the only legal method is deeply disturbing: it is withdrawal of clinically assisted hydration and nutrition. The patient slowly dies of thirst and starvation over a period of one to two weeks, with palliative care aimed at minimizing their suffering.

When I learned about this, I couldn’t believe it. Patients’ families often can’t believe it either. They bear a terrible burden as they watch it happen, and their testimony makes sobering reading.

One relative told researchers at Cardiff University that: “When they told me that, I felt like screaming.

"I thought, ‘you are MAD!’ I didn’t even contemplate it. I just don’t understand how anyone can sanction that law.”

While another said: “I just couldn’t bear that he was starving. I just thought, what a horrible—what

a dreadful way to live your last days. I just thought it was awful.”

And a third said: “But really, truthfully, what the hell is this? The system has to be in place where if treatment is a failure, if it hasn’t worked, then you can help that person die with dignity.”

Not all experiences are like this. Sometimes patients seem surprisingly calm in their last days, having been heavily sedated—a sign, hopefully, of palliative care working properly.

Nonetheless, these patients’ relatives are right that this method, with its obvious risks, is unacceptable. Whenever we decide to end a life, we must surely do it in the most humane way.

We need a serious public debate about this—yet seem to be far away from having one. We need citizens’ assemblies in which the issues are discussed, giving a voice to both recovered patients and to current patients’ families.

People with opposing views need a chance to present their case too—but the argument for legalizing a more humane form of assisted dying in these cases is strong.

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Jonathan Birch is a Professor of Philosophy at the London School of Economics and author of The Edge of Sentience: Risk and Precaution in Humans, Other Animals, and AI (Oxford University Press), out now in hardback and free via open access.

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