You and I and everyone will die. There is no point in fearing the inevitable, but there is every reason to be terrified of exiting through the torture chamber. How we die matters for ourselves and for those who have to watch our ending.
“Peacefully in her bed,” the death notices say, politely saving friends from what may have been days, weeks or months of excruciating pain, horror and humiliation. On average, 17 people a day die in terrible pain that can’t be relieved by even the best palliative care.
Tomorrow is your last chance to give your opinion on the right to die with dignity in a survey for an inquiry into assisted dying and assisted suicide set up by the Commons health and social care select committee. It’s unsatisfactorily worded, but there’s a space to give your reasons – and it only takes a few minutes, so sign up here while there’s still time.
The arguments for the right to avoid unbearable suffering at the end of your life have been well rehearsed in private members’ bills, most recently from Lord Faulkner and then from Baroness Meacher, successfully blocked by a largely religious lobby in whose doctrines only God ordains how and when we die. For decades, the public has been outspokenly in favour of the right to die: current polling shows 84% in favour, including 80% of the religious and 86% of people living with disabilities.
Scotland, Jersey and the Isle of Man are on their way to passing assisted dying laws. New Zealand’s End of Life Choice Act is one of Jacinda Ardern’s progressive legacies, while 11 US and all six Australian states have assisted dying laws, along with Canada and Colombia, and six European countries. The French president, Emmanuel Macron, has set up a series of citizens’ assemblies, promising there will be a law by the end of this year, and Ireland’s Oireachtas is due to launch a special committee on the topic. Other countries are rapidly following.
That doesn’t make them right, of course. The case against includes the fear that the old and frail will feel prevailed on to end their lives to save their children the burden of caring or to save their inheritances, and the memory of Harold Shipman and Gosport hospital mass murder of the inconvenient elderly in their care. Doctors or judges assessing someone’s mental capacity may miss undiagnosed depression. Could this be a slippery slope to cost-saving euthanasia? No law can be 100% safe.
But consider what happens now: each year, up to an estimated 6,500 terminally ill people try to take their own lives in often horribly bungled ways, while dozens travel to Switzerland’s depressing Dignitas clinic, too expensive for most, too bleak for many. It means dying sooner, while still fit enough to travel.
Age UK reports that 28,890 older people died in 2020-21 without receiving the care they were waiting for, but those neglected deaths are greeted with the same public apathy as rising infant mortality and excess deaths due to poverty. Fear of the possibility of occasional wrongful death due to assisted dying seems disproportionate compared with the actual wrongful deaths happening now.
Palliative care in England is good, but the Office of Health Economics warns that about 92,000 a year who need it die without it. But here’s an even more brutal truth. Even if everyone had the very best palliative care, and the best healthcare up until that point, it doesn’t always work. The right to life lobby lies about this: here’s one MP, writing a standard anti-assisted dying letter to her constituent, claiming to want “high quality, compassionate palliative end-of-life care, accessible across the country so each person who is nearing the end of their life feels safe in the knowledge that they will receive the very best care and be supported to die peacefully and painlessly”. Well, that’s bogus reassurance.
The Inescapable Truth is a report describing how even the very best palliative care cannot save everyone, with evidence from the dying, their relatives and palliative care professionals. Warning: you need to be brave to read this.
Here is how some of us will die. “Some will retch at the stench of their own body rotting. Some will vomit their own faeces. Some will suffocate, slowly, inexorably, over several days, their last moments of life disfigured by terror. Any one of us might suffer such a fate.”
Case after case describes the worst deaths, unrelievable by the best care, estimated at about 17 a day enduring this agony, physical and mental. “He was left with a big open hole directly into his bladder. He was so ashamed and he would cry” in pain and “utter degradation … He was begging to have his life ended”.
A palliative care nurse tells of a dying woman saying “I don’t want to be here any more. I want this to stop.” Terrifying terminal haemorrhages happen to between 3% and 12% of patients with some advanced cancers of the head and neck.
A nurse describes a woman with “tumours in her abdomen. It was basically dying flesh and she was still with us. Her family’s memory of her was her decomposing while she was still alive.” A daughter describes her mother yelping in pain: “She was in a nappy and that would distress her. I mean she was 66 years of age. She was a businesswoman. I think she was under the illusion, as we were really, that she would just slip gently away. I always thought that there was some form of medication that would gently help her in her final days of life.”
That’s the myth behind some of those “peacefully in her sleep” reassurances. Many are lucky, but none of us knows what awaits or how much we ourselves could stand. Once the law allows that dignified choice, people can die in comfort knowing they could escape the torture chamber if they want. If that’s what you want, sign the survey today – and take back control of your death.
Polly Toynbee is a Guardian columnist
This article was amended on 20 January 2023 to specify that estimates cited for terminal haemorrhage are for patients with some head and neck cancers, rather than all advanced cancers.
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