Nick Spencer on the role of emotive stories in the assisted dying debate, and what role they should play. 24/10/2024

“I have to confess to you I’m finding the conversation a distressing one because of [its] tendency to look away from the situation and to deny the reality.” 

So spoke Kit Malthouse MP during a discussion about assisted dying debate, run by the Religion Media Centre last week, in which I participated.  

He was responding to points that I and others had made about some of the more theoretical issues underlying the debate: dignity, choice, social responsibility, religious duty, and the like.  

His point, made with a little frustration but no rudeness, was that discussion about these matters is all well and good but fails to face the grim reality of people dying in despair and pain. “People are already killing themselves”, he explained. “Several hundred a year are blowing their brains out, taking overdoses… deciding to refuse treatment and starving themselves to death because they’re in such pain and agony.” The “willingness to look away from the horror story of the situation,” he concluded, “is quite distressing.” 

A subsequent speaker did pick him up on this. Given that people who campaign against assisted dying usually support – indeed base many of their arguments on – palliative care, they can hardly be accused of looking away at the moment of people’s suffering.  

But Malthouse’s comment did, albeit inadvertently, highlight one very important dimension of the assisted dying debate that merits attention.  

Those arguing for assisted dying have many upsetting stories on which they can draw. Estimates of the number of people receiving palliative care but who still die in pain range vary. One study from 2019 calculated that of those who die in a hospice, an average of 13.4% experience some level of unrelieved pain (1.4% not at all relieved, and 12% only partially relieved). It’s an uncomfortable fact for those who argue against assisted dying and is made all the more so by the often tragic, and sometimes lurid, stories of people dying in despair, as well as pain, at the end of the life. I am, on balance, against legalising assisted dying (for reasons to be explored in later posts and in the forthcoming Theos report, The Meaning of Dignity). However, after having listened to such stories, I seriously teeter on the brink of changing my mind. Do I really want to be one of those people responsible for others dying in this way? 

The problem with reaching the decision this way, however – dragged over to one side by the power of heart strings tugged – is that different stories, equally tragic, equally lurid, can easily drag you back to the other.  

Take the story of the 71–year–old man from Canada who was told he was terminally ill with end–stage Chronic Obstructive Pulmonary Disease (COPD), offered Medical Assistance in Dying (MAiD), and euthanized within 48 hours of his first assessment but who, it was discovered on autopsy, did not in fact have COPD. Or the story of the 29–year–old Dutch woman who was granted euthanasia on the grounds of unbearable mental suffering, despite being in good physical health. Or the story of the Canadian man in his 40s with inflammatory bowel disease, socially isolated and addicted to opioids and alcohol, who was told about MAiD during a psychiatric assessment and driven to the location where he received an assisted death, without his family being consulted. If one set of awful stories pull you on to one side, another set will pull you back. 

There are responses to such stories. For example, those in favour of assisted dying will say, yes, there are tragic and upsetting stories, but we can build in safeguards against such slippage. We don’t have to end up like Canada.  

On the other side, those against it will say, yes, there are tragic and upsetting stories, but palliative medicine is good despite being chronically underfunded. Just think what palliative care might achieve if only we, as a society, decided seriously to invest in it. That was more or less the substance of Health Secretary Wes Streeting’s recent intervention against the bill.  

And then there are responses to these responses. You probably already know them. More to the point, you can probably already guess the point I’m trying to make herе. 

Tragic, upsetting stories are relevant to this discussion. They are part of the ‘legitimate evidence base’, if that isn’t too cold a term. We should not, we cannot, “look away from the horror story of the situation” as Kit Malthouse rightly said. 

But nor should we allow such stories to make up our minds, as he was implying. Just as we cannot ignore the practical “evidence” – whether that is people dying in despair or being euthanised for being depressed or (not actually) ill – nor can we ignore the principles through which such evidence is interpreted. Questions of dignity, autonomy, responsibility and the like may seem, to some, unnecessarily abstract, but they are an essential part of the debate. 

All this may seem obvious, but I fear it needs saying. It is precisely because personal tragedy makes such good journalistic copy, that there is a real and present danger that the debate will be decided by those who can tug at the heart strings most successfully. That, in itself, would be a tragedy. We owe it to ourselves to think about this issue, as well as just to feel it.

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