We need to talk about dying

The assisted dying debate has been filled with horror stories of miserable ends. But does this reflect the reality of ordinary death?

By Rachel Clarke

Is the deathbed in Britain today really, as Kit Malthouse claimed during the House of Commons’s assisted dying debate on 29 November, “a place of misery, torture and degradation, a rain of blood and vomit and tears” for far too many people? Anyone watching the debate would be forgiven for assuming that most deaths now involve immense, and often intractable, suffering. As a palliative care doctor who has cared for thousands of people with terminal illnesses in almost every conceivable setting – in hospices, in hospital wards, in care homes, in intensive care units and in patients’ own homes – I felt my heart sink when I heard his words. I don’t doubt their sincerity, but their accuracy is far off the mark. I know the succession of horror stories heard during the debate is likely to generate fear amongst the public that succumbing to a terminal illness must be a fate worse than any other death. But is it?

This is not a piece against assisted dying, a medical treatment I do not oppose on principle. If even one person suffers what Malthouse describes, that is one too many. But most of the 600,000 people who die in Britain each year have a terminal illness, and do not endure the excesses of pain and indignity we heard described over and over again in the Commons. Dying people do not typically, “suffocate” or “drown” in their own bodily fluids, they do not writhe in agony, they are not “tortured” or “degraded”. Often, the dying process is as gentle, banal, beautiful, heartbreaking or prosaic as any other part of life. Its nature is varied, individual and, for many people, significantly shaped by whether they can access high-quality medical, social and palliative care.

In my experience, it is rare for dying to involve no suffering of any kind – but it is equally rare for the suffering involved to be unendurably bad. If anything unites the patients for whom I’ve cared, it’s that the more they recoil in horror from the thought of death, the more graphically they imagine it to be. Usually, their worst fears prove infinitely more dreadful than the comfort and dignity in which they find they end their days.

For this reason, I am profoundly worried about the unintended harms of this debate. I fear that lurid stories of faecal vomiting or suffocating in bodily secretions may have set back, by decades, attempts to better acquaint the public with what dying ordinarily looks like – an aim I share with so many of my palliative care colleagues. This is no small task in a society in which the majority of deaths take place in institutional settings such as hospitals and care homes, despite most of us expressing a preference, when asked, to die at home. Death is sequestered away, behind closed doors, and is often heavily medicalised until the very end. Confronting death remains a deeply-entrenched modern taboo. As a result, we have lost the easy familiarity with the stages and patterns of dying which used to exist when deaths largely occurred in people’s own homes.

So called “ordinary dying” – a term deployed for decades by medical professionals to describe the typical deaths of people from illnesses such as cancer, heart disease or liver disease – begins with patients noticing a loss of strength and energy. Activities which they used to take in their stride now require physical and mental effort. They may need afternoon naps to get through the day, with the naps becoming steadily longer or more frequent. At some stage, they find they are asleep more than they are awake. As their organs and body systems continue inexorably to fail, other changes emerge. Their weight often drops as their appetite fades. Their sense of thirst wanes too, so that although the patient eats and drinks very little, they are not, usually, particularly hungry or thirsty. At some stage, their brain becomes so much less responsive that sleep slides into unconsciousness. As the breathing centres in the brain stem begin to shut down, a pattern may emerge of long pauses between breaths which alternate with deep, sighing breaths. This pattern, known as Cheyne-Stokes breathing, can greatly alarm those gathered at the bedside, who are convinced with each pause that their loved one has died. But when we explain what is happening, that anguish is at least in part assuaged.

Sometimes, very close to the end of life, a small amount of saliva collects at the top of a patient’s throat because they are too weak or deeply unconscious to swallow it. As breaths pass backwards and forwards through the saliva, a harsh “death rattle” is heard, causing considerable anxiety in families. Again, our explanations can be enormously helpful at alleviating some of the distress of family members. Finally, as the patient’s heart muscle begins to fail, their blood pressure falls and the hands and feet may become cold, blue or pale. Usually there aren’t any dramas or surprises. There is a final exhalation, breath turns into air, and only gradually does it dawn on those present that the moment of death has passed.

I am not the kind of doctor who sugarcoats reality. I always try to practice with as much candour as my patients wish. So I will not pretend that dying is always like this, nor that horrifically bad deaths do not occur. A crucial issue, I would suggest though, is disentangling “necessary” from “unnecessary” suffering at the end of life. When I meet a cancer patient screaming on a trolley in A&E because nobody has ever given them the pain relief they need – and I dispense the tiny, cheap, simple dose of morphine that causes their agony to melt away – I rage internally that today, in modern Britain, we apparently care so little about dying people that we permit them to suffer avoidably through failures of care. It is a national disgrace that two thirds of hospice care in Britain relies on charity because the government and NHS refuse to fund it. (Keir Starmer and Wes Streeting could fix this tomorrow: as long as they fail to do so, their inaction proves how very little they care about dying people.)

Irrespective of one’s views on assisted dying, we can surely all agree that we must ask how we can minimise the number of people in Britain who need it. No one should be driven into ending their life prematurely because we have failed to provide them with the care that might make life feel that it’s worth living. Assisted dying, in other words, should be an act of last resort, reserved for those whose suffering is truly intractable.

With this in mind, I encourage you all to consider – not flinch from – the matter of how we die. Because avoidance and denial usually exacerbate suffering. When I first meet a patient, they are often paralysed with fear. The most potent intervention I can offer is not a supersized dose of diamorphine but a simple question, asked with kindness and directness: “When you think about the future, what are you most afraid of?” I am giving them an open invitation to confide their bleakest fears. At best, we start an honest dialogue about what their death may look like and what matters most to them. Sometimes, tentatively, I may go a little further: “I’ve noticed that often patients feel unable to ask about the thing they’re most preoccupied with, which is what it’s actually going to be like when they die – and I wonder if this is something you’d like to talk about?” The relief, so often, is palpable. At last the anticipated horrors are out in the open. What I describe next invariably comes as a relief and a surprise. The future feels a little less daunting, the patient a little less alone. Looking at dying with our eyes wide open can help to eliminate future suffering. And I can genuinely say that for most patients, most of the time, dying really isn’t as bad as they fear.