‘Begin at the beginning,’ advised the King in Alice in Wonderland gravely, ‘and go on till you come to the end: then stop.’1 Death is a grave place to start with instead but doing so comes naturally. For a quarter of a century death has been my day job.
I started in hospitals in the 1990s. For a long time that date seemed almost embarrassingly close at hand. Subtly it has moved away until now it seems almost from another age. That’s what happens as we get older – we notice that the most profound changes happen slowly. Or at least we partly notice. Even in my first year of work I spotted that when you matched people’s stories to their written notes, the discrepancy veered in one direction. If a patient recalled they’d been taking a pill for three years it was probably five. The freshness of our memory betrays us. For most of us, the gift of recall inspires a mild but persistent state of overoptimism. It’s what we react to when we’re reminded of our error and exclaim over how long ago something turns out to have been. Most of the time it still seems like yesterday. I am still perplexed that I am not more often still mistaken for a junior doctor. In truth, it hasn’t happened for five years – which, regrettably, probably means ten.
The first time I was called in an emergency, because someone had become catastrophically unwell, I remember running from the hospital accommodation where I was sleeping, across a wide lawn by a car park, and seeing the daisies in the summer night make the grass look full of stars. The memory was fixed in my head by the terror that followed, of rushing into a side room and seeing something hard to make sense of. In a bed an old woman was sitting up, her eyes open but unfocused, taking deep, odd breaths. A nurse was there, trying to put an oxygen mask on the woman’s face, but the woman’s bony hands were moving about and pushing it away. Then she stopped pushing but carried on with her deep, odd, gasping breaths. I don’t remember much about what happened or what I did in the short space of time before a more experienced doctor arrived, I only remember the deep relief when he came and how exceedingly, unmistakably and disturbingly wrong the woman looked. ‘Well,’ said my senior to the nurse and to me, taking a glance and shrugging, ‘she’s dying, isn’t she?’
At the time I heard his words as having a question mark. I was wrong. Having seen it before, many times, the situation was obvious to him. My panic did not totally resolve, and as we walked away I kept wondering if, despite the other doctor’s assurance, there was something we should have been doing. It took the experience of many more deaths – until almost the end of that first month – to understand what the other doctor had seen. Once you recognise death you can, to a huge extent, relax. Much of the terror comes from the uncertainty over whether there is some desperate action it would be calamitous to miss. Explain to a panicking family that their relative is dying and their reaction can sometimes be relief. Death is often expected; panic comes from anxiety over whether something needs to be done. Making sure someone is comfortable as they die is important but usually straightforward. Another recent book about the future of mankind, Yuval Noah Harari’s Homo Deus, wrote about the extent to which we ‘have become used to thinking about death as a technical problem’ rather than as our natural end. ‘When a woman goes to her physician and asks, “Doctor, what is wrong with me?” the doctor is likely to say, “Well, you have the flu,” or “You have tuberculosis,” or “You have cancer.” But the doctor will never say, ”You have death.”’2 I can report that not only do they often say just that, but it is something people can be relieved to hear. To know the dissolution is real, to give it a name, to know that there is nothing one needs to be frantically doing to ward it off, these things matter. They are normally done well. See them done badly once and you never forget.
I speak of death that comes towards the end of life, towards the end of a long life, because most of the time that is when it happens. It’s what modernity has given us. Death, for most people, is a fading out, with no last words and little awareness (often none at all) of the final experience. One breaks the news of it to the family; the person themselves may not be interested. Their interest has already faded – read Tolstoy’s account in War and Peace of the death of Prince Andrei. (Not many people die with Andrei’s lucidity but then not many live with it.) I say it took only weeks to recognise the final approach of death; I should add that it took years to sense its looming shadow. Sometime around 2007 I remember we bought Christmas presents for our patients. It was straightforward: being Christmas the hospital was so quiet we had few people to buy for and time to send a member of the team shopping. One old man liked whisky and we got him a bottle of malt. He was obviously pleased, despite being mostly withdrawn and absent. Over the following week he drank a couple of thimblefuls. The bottle remained by his bed while he spent his time sitting, or lying, without books and without complaint. He was waiting while his family (who did not visit him) made plans and our social workers made theirs. The plans were never completed. One morning someone else was in his bed and the bottle was gone.
Death in old age is predictably unpredictable. Frailty, the profound frailty of age, was there in his lack of impatience. It was unmistakeable except I had not learnt that yet. Most of my patients – the vast, vast majority – fade and are gone. Sometimes an infection gives warning of the final event, sometimes not. To be able to recognise where someone is in life’s trajectory is essential. The world’s oldest medical textbook, the Egyptian Ebers papyrus, which dates back to around 1,600 years before Christ but is almost certainly based on Sumerian teachings of millennia before, divides up the conditions that a doctor sees. It divides them into those of which he says ‘I shall treat’ and ‘I shall not treat’. Managing expectations and not overselling yourself mattered then as now, and so did knowing your power and acting appropriately. When someone is dying, treatments whose only impact can be to give them a less pleasant death are not good medicine. They are not medicine at all.
Only very rarely have I had patients dying with full, bright consciousness. I remember two, both brilliant. One was a woman whose lungs were filling with fluid as her heart failed. She remained alert not because we were unwilling or unable to treat her sensation of drowning but because she chose alertness over comfort. There was nothing masochistic about her bravery, it was simply her choice. Another I cared for because his own team (not on duty that weekend) had asked me to check on him. Knocking on his door and entering, I was startled by his immediate enquiry of ‘Am I dying?’ His enquiry was not panicked, merely imperious. If he had had any time for fools before, he had none now. I replied that I understood that he was and he seemed satisfied. The next day he died, surrounded by his family.
Most of my patients fade out. They have begun fading years before. A friend noted his own decline. He reported finding himself of less interest, to himself and others, than he had before. In his ninth decade he told me he did not want to die too slowly nor too quickly. So many of those he had loved, he pointed out, had already died. He did not want his death to be drawn out but he wanted time to see what it was like.
My patients are usually old. The hospices, which have done so much good for so many, are not for them. Hospices provide privacy and peace and relative luxury. They tend to be for the middle-aged, for those dying before their time of diseases discrete enough to be predictable. The old and the frail, those for whom the precise timing and events of their decline and fall can be less well prophesied, do not get to hospices. Most of us, when elderly, die in acute hospital beds like the ones I tend, where wards are noisy and lacking in privacy, dignity or space.3 My partisan resentment of the hospice movement is eased by how seldom my patients notice what they lack, or complain of dying on chaotic wards packed with open bays of the sick and demented. This is not the same as saying that they do not deserve better.
While most of my patients are old, I am not a geriatrician. I am a general physician. If you arrive at hospital with a complaint which cannot be sorted out by the emergency department, and particularly if you have problems with more than one organ system, I am likely to be looking after you. I see young people but almost invariably I can get them rapidly home. The ones who stay are those who are frail, those in whom there is more than one problem afflicting them. Medicine is so good – the state of normal human life has become so good – that, by and large, these people are all elderly. Even including rare diseases, or common diseases that have taken an unusually bad turn, most people who are young or middle-aged can be turned around at pace and discharged. It is worth celebrating that the majority of hospital inpatients are now the elderly.
This book is about what has changed and what will change in human lives. Some things, though, remain the same. We are born, we live, we die. It is my experience that those in old age who are terrified to die are those who sense they never properly lived. The people who were waiting for something to start, which never did, can find their death unbearable. ‘Older people who are reasonable, good-tempered and gracious bear ageing well’, wrote Cicero. ‘Those who are mean-spirited and irritable will be unhappy at every stage of their lives.’4 My friend told me he regretted the thought of not seeing his wife’s face again, but that he did not resent dying. This was the man who had noted that the decline of his mind with age had made his thoughts and conversation less interesting. He was right, but these had been at such a level that even the remnants sparkled. ‘There is something pleasant’, he said towards the end, ‘about handing back your badge.’
‘Due to an uncompromising humanist belief in the sanctity of human life,’ wrote Harari, ‘we keep people alive till they reach such a pitiful state that we are forced to ask, “What exactly is so sacred here?”’5 In fact what we offer is kindness, intelligently applied, and neither doctors nor their patients are usually so frightened by death as to become phobic about it. The rise in senescence has not happened through fear of mortality. The extension of old age, and the continued survival of those in the greatest states of frailty, is a side effect, an ineluctable consequence of preventing people from dying young. In recent wars casualties have survived with injuries that would have been fatal in any conflict before. They have not survived chiefly because of specific efforts to help those with the most extreme injuries. They have survived because combat care of the wounded has improved in every way, and when the outcomes improve for the average they also get better at the extremes.
An eminent twentieth-century physician and epidemiologist named Richard Doll remarked that death in the old was inevitable but death before old age was not. Old age has grown more common because we have been so successful in stopping the premature deaths that pinch us off before we reach it.
In Fig. 1 the area under the curve represents life and the area above it holds more than death. The area above the curve – so dominant in 1860, so slimmed down today – is the domain of heartbreak, grief and lost opportunity, agonisingly palpable to the survivors. Anyone wishing to bemoan modernity would be right to say that the graph is made of numbers. They would be lost to reason if they forgot what those numbers meant. The coffins on the upper left side of the graph are small ones. The fact we need so few of them today is part of the reason so many of us will experience decay.
Fig. 1. Percentage survival at period rates for males in England and Wales. Reproduced by permission of the Clinical Trial Service Unit, University of Oxford. Data taken from the reports of the Registrar-General for England and Wales and the Human Mortality Database.