Assisted dying is on nobody’s bucket list – but preventing it is deeply unjust
There are limits to how much you can infer from the 540 British people who have elected to die with the help of Dignitas since it opened in 1998: it’s hard to tell how many more people would make this choice if they had £10,000, which is how much it typically costs.
But one figure, which came out in this week’s House of Commons’ assisted dying investigation, tells its own story: Britons constitute more than one in seven of the people who end their lives in this way; roughly the same proportion are French; in the majority by far are Germans, at 40%. The German government overhauled the laws on assisted dying in 2020, and the French are in the process of doing so, recognition of a fact so obvious that it is astonishing anyone should have to say it out loud: most people don’t even want to go to a hospital to die, let alone travel to another country.
In 2011, Terry Pratchett made a documentary about Dignitas, having been diagnosed with posterior cortical atrophy, a form of Alzheimer’s, three years before; he said often that he wanted an elective suicide, although he died naturally in 2015. It was a stark, very memorable piece of film-making: one of its subjects, 42-year-old Andrew Colgan, after describing in unflinching detail just how unbearable he found it to live with multiple sclerosis, then fell in love with Zurich as he glimpsed it on his way to the clinic. It made you wish more than anything that he didn’t have MS; but it didn’t, if you were listening, make you want to overrule his decision.
Choosing to Die was controversial: disability campaigners protested outside the press screening, saying the film implicitly debased the value of a disabled life; reviewers sympathised with the plight of the loved ones left behind, and cast the choice as the height of individualism, which is to say, selfishness; commentators worried about the implications for terminally ill people who wanted to die naturally, but whose rapacious family might seek to hasten their end. It was one of those issues they call “emotive”, but the emotions seemed to come out asymmetrically, and be much more strident from opponents of assisted dying than supporters.
There is a code of silence among those who believe in the right to die. Medics don’t say it publicly, “for fear of repercussions”, Dignitas’s Silvan Luley told the Commons this week. The loved ones so often ventriloquised by the other side tend not to lobby for it, because their animating emotion is to wish the situation were otherwise, not to want to hurry it along. This leaves terminally ill people themselves stranded, to make the case while they’re dying – one of the saddest things about the UK law as it stands is that we only discuss it when someone like Debbie Purdy or Phil Newby is forced to see out their life beseeching one judge after another. No one has the court of appeal on their bucket list.
For all that the debate was lopsided, I assumed 10 years ago that the incremental march of reason would change the law on its own. As medicine advances, the range of diseases that can kill us naturally narrows; there surely has to be a countervailing advance of personal agency in the matter of our own deaths. The alternative is that we all have to live to be 104, in some obscure act of thanksgiving to whoever it was who discovered a blood test for cancer.
But a decade on, reason hasn’t marched anywhere and I’ve now seen a lot more of the realities of old age. My mother, battling terminal disease in all but one of her major organs, recently lost her sight completely, and it strikes her as a fresh outrage every day, not because she has any cognitive decline, just because of how much worse this has made her already quite grinding life. A friend’s mother just died having spent her final weeks with psychotic dementia, unreachable and in intense distress. Another friend’s mother has spent seven years in a state of such confusion that she can’t recognise or take comfort from anyone, yet still has enough awareness to be ambiently terrified, although she doesn’t know what In none of these cases would a change in the law make any difference – my mum could end her own life without assistance, but there’s still enough solace in it, and nobody is arguing to be able to assist in the death of someone not compos mentis. Yet many of us in the generation below are ardently hoping for the law to change, not for our relatives, but for ourselves: it’s not for wimps, the business of dying naturally. You might get lucky with what they call “compressed morbidity”, a very short period of illness before you die, but you probably won’t. You might, in the event, find the suffering less awful than it looks, in which case you will, of course, retain the right to die in your own time. But the prospect of an enforced period of suffering, of unknowable length, to satisfy the sensibilities of people who may be motivated by a faith you don’t share, or a fear of the law legitimising matricide, which you think unfounded, or some woo-woo sense that the universe must be left to move in its own mysterious way, is not so much unappealing as deeply unjust.
Eighty per cent of people who make inquiries to Dignitas never follow up. Some will have been put off by the confrontation with the reality of the process; for others, it will have been consolation enough to know the option exists. But if we want that option to exist in our own homes, we need to start fighting for it; the right to die won’t happen its own.
Zoe Williams is a Guardian columnist
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