Still ill: Gawande says the sick and aged are victims of our refusal to accept the inexorability of our life cycle. Photo: Christopher Morris/VII Photo
Being Mortal: Illness, Medicine and What Matters in the End
Profile Books, 282pp, £15.99
Dying has never been easy but modern medicine has made it much more difficult. Our ancestors died quickly; few lived long enough to be faced by the progressive debility and dementia that most of us will now suffer. And when they fell ill all they could do was pray for either recovery or eternal life after death, as premodern medicine was largely ineffectual.
But now prayer has been replaced by chemotherapy, surgery and radiotherapy – and the hope for angels in heaven by the bleak reality of hospitals and care assistants in nursing homes. When we are diagnosed with cancer – and we are a thousand times more likely to develop cancer at the age of 70 than at the age of 20 – we face difficult, at times impossibly difficult medical choices, trying to weigh the risks and pain and toxicity of treatment against the chance of a slightly longer life. Besides, as I sometimes tell some of my patients, to cure one disease means to die from another one. We are all, after all, mortal.
Atul Gawande is a general surgeon in Massachusetts who writes for the New Yorker and will deliver this year’s BBC Reith Lectures in November on the future of medicine. He has already published three very successful books for the general public about the practice of medicine and surgery: Complications, Better and The Checklist Manifesto describe how medicine is an intrinsically dangerous business, prone to error in even the best of hands, and the means by which risk can be reduced. Although dealing with the weaknesses and fallibility of doctors, they are positive books, which express little doubt about the value of modern medicine. Gawande’s latest book, Being Mortal: Illness, Medicine and What Matters in the End, is written in the same polished style as its predecessors, with the precise detail and thoughtful analysis for which the New Yorker’s journalism is famed, but it strikes a different note. Mortality, writes Gawande, has been made “a medical experience . . . And the evidence is it is failing . . .”
By writing a book about death and dying, and the way in which modern medicine so often only makes the experience worse, he will, he concedes, be raising for some “the spectre of a society readying itself to sacrifice its sick and aged. But,” he asks, “what if the sick and aged are already being sacrificed – victims of our refusal to accept the inexorability of our life cycle? And what if there are better approaches, right in front of our eyes, waiting to be recognised?”
The book proceeds by telling a series of stories about some of Gawande’s patients and members of his own family, culminating in the death of his father – also a surgeon – from a rare and incurable tumour of the spinal cord. The first stories deal with the problem of ageing, of progressive debility and the loss of independence that comes with it. In the past, only a few people lived long enough to experience this and family ties were much stronger than in the modern age, so that elderly parents would be cared for in their own families. Now, however, many of us will spend our declining years in institutional care, in what is often the misery of a nursing home.
Gawande recounts the life of his Indian grandfather who “had the kind of traditional old age that, from a western perspective, seems idyllic”. Supported by his family, he was able to continue to run his own farm in rural India long beyond an age at which he would have been permitted any kind of independent life in contemporary America. He managed to die at the age of 110 without ever having gone near a nursing home. By contrast, Gawande tells the story of his wife’s grandmother, a fiercely independent woman living in Virginia, who slowly and inevitably declines, eventually ending her days unhappily in a well-run but soulless nursing home.
Gawande gives us an account of the theories of ageing. The message is depressing: “We just fall apart,” in the words of an eminent geriatrician whose own decline, and that of his wife, are recounted by Gawande. It makes for quite tough reading. He sits down for lunch with the 87-year-old doctor and his wife in their retirement home.
Both made a point of chewing slowly. She was the first to choke. It was the omelette. Her eyes watered. She began to cough . . . “As you get older the lordosis of your spine tips your head forward,” he said to me, “so when you look straight ahead it’s like looking up at the ceiling for anyone else. Try to swallow while looking up: you’ll choke once in a while. The problem is common in the elderly. Listen.” I realised that I could hear someone in the dining room choking on his food every minute or so . . . A couple of bites later, though, he himself was choking.
Gawande discusses the importance of joined-up care for the elderly, who are usually prescribed many drugs with many complex interactions, by different specialists, often with chaotic and damaging results. Small details such as trimming of toenails (an ability we lose as we stiffen with age) can come to have an important influence on whether people can get about or not, with all manner of knock-on effects. It seems that in America geriatrics as a specialty is in decline. A professor of geriatrics, his department about to be closed, tells Gawande that “it’s too late”.
The book moves on to the challenge of institutional care for the elderly. The author correctly observes that we do not like to think about our decrepit and declining future – and as a result most of us are unprepared for it. When we need help, he says, it’s too late to do much about it. The elderly geriatrician confesses that he only thinks about next week, which Gawande describes as “understandable. But it tends to backfire”: as though planning could somehow prevent the sad fate that awaits us all. (He does admit towards the end of the book that he is “leery” about the idea that “endings are controllable”.)
I once spent several months working as a psycho-geriatric nursing assistant. I am familiar with the soulless kind of care homes that Gawande encounters and, like most of us, I have a horror of ending my days in one. And he is entirely right to be so critical of them. He also tells uplifting stories of how some homes were transformed by a few inspired people – in one, parakeets, pets and a vegetable garden were introduced and the inmates given much greater autonomy, with hugely beneficial results – yet I fear that these remain rare exceptions.
Throughout my professional life, I have had to tell people that their life was coming to an end. I have often struggled to find a balance between giving people hope, if only of a short life, and casting them into despair for whatever time they have left. I have sometimes bitterly regretted being too optimistic but it is very difficult to tell somebody to go away and die.
My juniors often ring me at night by about emergency cases, patients with head injuries and haemorrhages. A quick decision is needed on whether to operate and possibly save the patient’s life – though if the patient survives he or she will be left profoundly disabled – or to let the patient die. If I tell them to operate I get back to sleep, but if I tell them to let the patient die usually I lie in bed awake for a long time, as few things in medicine are ever certain, and worry that I have made the wrong decision. It is so much easier to treat than not to treat.
Life without hope is hopelessly difficult but at the end hope can make hopeless fools of us all. Gawande’s father died slowly, and treatment, first with surgery and then with radiotherapy, made little difference. Doctors sometimes joke that you should never give an oncologist a screwdriver because he (or she) will try to open the coffin and carry on treating the patient but, in truth, it is an immensely difficult job and I certainly could not do it myself. Gawande is deeply critical of some of the doctors who treated his father. They apparently made “foolish predictions”, and he ends up “spitting mad” with the oncologist who suggested that chemotherapy might get his father, who was slowly becoming paralysed from the neck down, back on the tennis court. In the event, his father declined any chemotherapy and died peacefully at home with what sounds like excellent community care.
Towards the end of Being Mortal, the author describes the satisfaction of helping one of his patients to a good death rather than inflicting what doctors call “aggressive” treatment, with only a small chance of significantly prolonging the patient’s life. Most surgeons, as they get older, learn that knowing when not to operate is just as important as knowing how to operate, and is a more difficult skill to acquire.
Gawande concludes: “Our reluctance to honestly examine the experience of ageing and dying has increased the harm we inflict on people . . . we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers.” It is impossible not to agree with this.
He suggests that overtreatment of people with cancer and poor-quality institutional care for the elderly are problems not confined to the United States but, indeed, are universal. I do not doubt this, but the US health-care system is commercial, competitive and immensely expensive compared to the rest of the world, and this leads to what many European doctors would consider extravagant and sometimes grotesque overtreatment. Americans take in optimism with the tap water. I suspect the explanation for the problems Gawande depicts so graphically in this book lies as much with American patients having unrealistic expectations as with the doctors who fear to disabuse them of these, but who also make a great deal of money in the process.
The solution, Gawande argues, is that doctors must take into account the balance of their patients’ hopes for a longer life and their fears of the risks of treatment. He says he used to think the problem of deciding whether to undergo potentially dangerous treatment was just one of uncertainty. He invokes – mistakenly, in my opinion – the psychologist Daniel Kahneman’s “peak end/duration neglect rule”: the surprising fact that our recollections of painful medical procedures are determined by an average of the intensity of the pain at the end of the experience and the most painful moment during it. Oddly, the duration of the experience does not influence our rating of the pain; a long and painful procedure will not be remembered as painful if it ended relatively painlessly. Gawande applies this to our anticipation of future risk and pain, which is, surely, an entirely different affair.
In simpler terms, his argument is really the age-old plea that doctors should negotiate and not dictate the options for treatment with patients, carefully explaining the balance of risk and benefit. Yet it is interesting that he provides little, if any, explanation for why this so often fails to happen. It is a plea for doctors to strive to be good doctors, because their role should be not just to “ensure health and survival . . . but . . . to enable well-being. And well-being is about the reasons one wishes to be alive.” We go to doctors wanting hope and honesty, but often the two things are in conflict. The central problem, I think, remains one of uncertainty: some patients show remarkable responses to chemotherapy but some show none; some experience terrible side effects, others do not. It is this uncertainty that prompts doctors, for reasons good and bad, to promote, and patients to accept, treatments that at times have little chance of success and a high risk of making things worse.
In the last chapter he discusses the question of euthanasia for the terminally ill, with which, a little hesitantly, he says he agrees. He fears that if it becomes too easily available it will hinder the development of hospice care and observes that this has already happened in the Netherlands (though I believe the reverse has occurred in Oregon). Contrary to what he says, euthanasia is available in the Netherlands, and in Belgium and Switzerland, on the grounds of hopeless and unbearable suffering alone; a terminal diagnosis is not necessary. He does not discuss the possibility that Dutch culture is such that many people may prefer to die at home cared for by their family, rather than by strangers in a hospice.
We cannot be certain what we will decide when we, too, face these terrible decisions. I would like to think that if one day I have the choice between dying quickly in my bed at home as opposed to dying in a hospice, or a longer life in a nursing home, even if it had pets and parakeets, I would choose my own bed. But you never can tell.
Henry Marsh’s “Do No Harm: Stories of Life, Death and Brain Surgery” is newly published in paperback (Phoenix, £8.99)