Those narratives are to some degree up to the individual, but significantly influenced by society's standards too. And standards can change. Our ancestors put up with things the modern self would typically find impossible to bear. It is said that soldiers at Waterloo got back in the saddle immediately after limb amputation. In the United States in 2018, people were trying to bring emotional support peacocks onto planes. This is not to make light of contemporary experiences of agony -- we are where we are, and can't get out of there by stern self-talk or wishing -- but only to put it in some context.
With this in mind, it is myopic to think that a law legalising euthanasia won't itself eventually have a narrowing effect on what kinds of distress are considered tolerable. Indeed, a quick look at current internet trends contains useful intelligence for writers of dystopian fictions set in the near future.
People who treat chronic illness as an identity of sorts are a huge social media ecosystem: finding each other with hashtags such as #spoonie, #fibromyalgia, #chronicillness and #PoTS, documenting their daily symptoms, and offering each other public support. Most of them are women, and many feel the medical profession offers them nothing but scepticism and contempt. Whether or not these people are indeed incurably ill, the more important point for current purposes is that a lot of them clearly believe they are, and find their own suffering unbearable. Locked in apparently interminable physical dysfunction and with no agreed cure in sight, one doesn't have to work too hard to imagine a world where assisted dying seems to them the only exit available, with added opportunities to record the whole thing on TikTok channels.
Do we really know for sure that relevant institutions, weak as they have already been shown to be, would be able to see off impassioned appeals from such a cohort for kindness in helping to relieve them from the burden of living? If we Brits look with horror on Dutch doctors legally euthanising a 29-year-old woman on grounds of "chronic depression, anxiety, trauma and unspecified personality disorder", it is perhaps only because our own old-fashioned ethical standards have yet to catch up.
Grasping for certainty, we might assume that what counts as a disease or an illness, at least, is purely physically determined -- but here, too, things are not so clear-cut. The late philosopher Ian Hacking wrote perspicuously about the way that some illnesses are "interactive kinds" showing "looping effects" -- meaning that the public's grasp on the existence of a particular illness, and what count as medically accepted conditions for its diagnosis, can influence the acknowledged prevalence of the illness in question. This in turn imperceptibly shifts the diagnostic criteria over time. For both reasons, the pool of patients can suddenly markedly expand, and especially where there is no easily ascertained underlying physical cause.
As people begin to apply a set of diagnostic criteria to their own lives, and interpret their physical experiences within that frame, hundreds of thousands of people can come to count as patients of a given syndrome, whereas at one point only a few did. Hacking's prescient examples included multiple personality disorder (now known as dissociative identity disorder) and autism. There's every sign that chronic disorders such as fibromyalgia and postural tachycardia syndrome (PoTS) are going the same way, with added internet rocket fuel.
There is a way of reading this argument that implies many or even most such self-diagnoses are bogus. Once again, though, this is too simple-minded an approach. Clichéd as it has become to say it, the mind and the body are connected. The habitual framing of a particular bodily sensation as having pathological origins can have knock-on physical effects, building up a prison of real and distressing symptoms over time. Only hubristic doctors feel able these days to pronounce with certainty about whether a given symptom is "purely psychological" or not. From a distance, most of us can see the shape of the problem at scale -- the strong effect of transitory cultural influences upon bodily and mental resilience across a population -- but at the micro level, treating individual patients, it is usually therapeutically irrelevant information.
Given these treacherously shifting sands, might we at least collectively fight off the idea that a diseased or suffering life has only whatever subjective worth the individual patient places upon it -- and that if the answer is "none", it is time to put an end to things? It seems we have a big job on our hands. One problem is that, perhaps subconsciously craving some kind of hero's journey in a boringly meaningless world, many of us have turned the quest for physical optimisation into a public identity, with an accompanying sense of failure once inevitable decrepitude sets in.
Broadsheets now tell you how to reduce your "metabolic age" through exercise and changes to diet; dedicated watches track every vital function, spawning thousands of everyday acts of neurotic checking for signs of imminently waning powers; ageing actresses' faces are cut up and remoulded to hide signs of cellular decay. There is even a "Don't Die" movement, whose exponents actually hope to achieve immortality through things such as fasting and temperature-controlled mattresses. Though nobody ever explains what all this frenetic body-hacking is for, exactly, Gen Z have obviously received the memo, drinking less and exercising more than previous generations but without much added happiness to show for it. When they too eventually arrive at old age and disease, it will be hard to convince them that the failure of their bodies is not a personal disaster after a lifetime spent hearing the opposite.
In effect, this is the bastardised version of "dignity" we seem to have inherited: one where you only count as having it if all your bodily functions are currently under control. Dignity in dying is a concept we hear a lot about -- indeed it's the name of one of the most prominent organisations campaigning for a change in legislation -- and yet dignity is also a culturally porous entity, changing its shape according to prevailing norms and ideals. The Enlightenment philosopher most famous for representing dignity as a universal human value was Immanuel Kant, but he would be horrified at the idea that its possession -- or not -- somehow depended on your contingent physical state. Yet when a cross-party group of MPs dramatically complains that, under present legal conditions, "so many are forced to die without dignity", it seems likely this is exactly what they mean.
Nobody relishes the prospect of the opposite. I once worked in a nursing home and a lot of my time there was spent dealing with incontinence: not much fun, either for the resident or the carer. Still, in the right sort of setting, both become accustomed and can look past it to more important things. The venerable Kantian-inspired ideal is that in periods of frailty, you can retain dignity in spite of what is happening to you physically; and this is recognised when carers look after you in non-instrumental, respectful ways that acknowledge your intrinsic human worth.
From this angle, the legalisation of euthanasia does nothing to increase dignity but provides new ways to undermine it, and especially in the present non-ideal context where social care is already underfunded and overstretched. If by "people should be allowed to die with dignity" politicians really mean "people should be put out of their misery" -- and where that misery is a direct function of inadequate and demeaning care standards -- they should say as much, explicitly, and not hide behind sentimental language designed to make them sound like moral heroes.
This week it was reported that 38 Labour MPs, including 13 in government roles, are already backing demands for the scope of the forthcoming bill to be extended; to cover not just the terminally ill, but the more vaguely construed "incurably suffering" as well. It seems that despite all the denials, a slope beckons after all; though those concerned still seem to think they are in control of the descent. It is ironic that, for a set of people so apparently keen on the value of personal autonomy, politicians defending the legalisation of euthanasia display a naïve trust that the world will always collude with them to maintain sufficient defences against unethical slippage or abuses of power.
They talk as if medics will always make consistent decisions about whether stated legal conditions have been met, and patient pressure groups or ideological movements will never form to distort their judgements; as if subsequent language users are bound to understand vague concepts like "unbearable" or "incurable" in just the same way as we do now; as if distressing illnesses presently affecting a relative few can't metastasise in future. They are happy to talk simplistically of kindness and cruelty as if they are in primary school, while outsourcing responsibility for maintaining adequate guardrails to more grown-up sounding people and things: doctors, bioethicists, legal definitions, forms signed in triplicate.
In short, although with their babyish words politicians imply that a personal choice about whether and when to die is disconnected from the decisions and actions of other people, it is not, and it never will be. A big clue is in the term "assisted". If we had any sense as a society, we would decline the invitation to set foot on their big shiny playground slide, but I won't be holding my breath.