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Growing old disgracefully: a deconstruction of death

Atul Gawande argues that medicine has skewed our attitude to mortality. The neurosurgeon Henry Marsh reviews.

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 
Atul Gawande
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But now prayer has been replaced by chemotherapy, surgery and radiotherapy – and the hope for angels in heaven by the bleak reality of hospitals and care assistants in nursing homes.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)

This article first appeared in the 15 October 2014 issue of the New Statesman, Isis can be beaten

Photo: Getty
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Ken Livingstone says publicly what many are saying privately: tomorrow belongs to John McDonnell

The Shadow Chancellor has emerged as a frontrunner should another Labour leadership election happen. 

“It would be John.” Ken Livingstone, one of Jeremy Corbyn’s most vocal allies in the media, has said publicly what many are saying privately: if something does happen to Corbyn, or should he choose to step down, place your bets on John McDonnell. Livingstone, speaking to Russia Today, said that if Corbyn were "pushed under a bus", John McDonnell, the shadow chancellor, would be the preferred candidate to replace him.

Even among the Labour leader’s allies, speculation is rife as to if the Islington North MP will lead the party into the 2020 election. Corbyn would be 71 in 2020 – the oldest candidate for Prime Minister since Clement Attlee lost the 1955 election aged 72.

While Corbyn is said to be enjoying the role at present, he still resents the intrusion of much of the press and dislikes many of the duties of the party leader. McDonnell, however, has impressed even some critics with his increasingly polished TV performances and has wowed a few sceptical donors. One big donor, who was thinking of pulling their money, confided that a one-on-one chat with the shadow chancellor had left them feeling much happier than a similar chat with Ed Miliband.

The issue of the succession is widely discussed on the left. For many, having waited decades to achieve a position of power, pinning their hopes on the health of one man would be unforgivably foolish. One historically-minded trade union official points out that Hugh Gaitskell, at 56, and John Smith, at 55, were 10 and 11 years younger than Corbyn when they died. In 1994, the right was ready and had two natural successors in the shape of Tony Blair and Gordon Brown in place. In 1963, the right was unprepared and lost the leadership to Harold Wilson, from the party's centre. "If something happens, or he just decides to call it a day, [we have to make sure] it will be '94 not '63," they observed.

While McDonnell is just two years younger than Corbyn, his closest ally in politics and a close personal friend, he is seen by some as considerably more vigorous. His increasingly frequent outings on television have seen him emerge as one of the most adept media performers from the Labour left, and he has won internal plaudits for his recent tussles with George Osborne over the tax bill.

The left’s hopes of securing a non-Corbyn candidate on the ballot have been boosted in recent weeks. The parliamentary Labour party’s successful attempt to boot Steve Rotheram off the party’s ruling NEC, while superficially a victory for the party’s Corbynsceptics, revealed that the numbers are still there for a candidate of the left to make the ballot. 30 MPs voted to keep Rotheram in place, with many MPs from the left of the party, including McDonnell, Corbyn, Diane Abbott and John Trickett, abstaining.

The ballot threshold has risen due to a little-noticed rule change, agreed over the summer, to give members of the European Parliament equal rights with members of the Westminster Parliament. However, Labour’s MEPs are more leftwing, on the whole, than the party in Westminster . In addition, party members vote on the order that Labour MEPs appear on the party list, increasing (or decreasing) their chances of being re-elected, making them more likely to be susceptible to an organised campaign to secure a place for a leftwinger on the ballot.

That makes it – in the views of many key players – incredibly likely that the necessary 51 nominations to secure a place on the ballot are well within reach for the left, particularly if by-election selections in Ogmore, where the sitting MP, is standing down to run for the Welsh Assembly, and Sheffield Brightside, where Harry Harpham has died, return candidates from the party’s left.

McDonnell’s rivals on the left of the party are believed to have fallen short for one reason or another. Clive Lewis, who many party activists believe could provide Corbynism without the historical baggage of the man himself, is unlikely to be able to secure the nominations necessary to make the ballot.

Any left candidate’s route to the ballot paper runs through the 2015 intake, who are on the whole more leftwing than their predecessors. But Lewis has alienated many of his potential allies, with his antics in the 2015 intake’s WhatsApp group a sore point for many. “He has brought too much politics into it,” complained one MP who is also on the left of the party. (The group is usually used for blowing off steam and arranging social events.)

Lisa Nandy, who is from the soft left rather than the left of the party, is widely believed to be in the running also, despite her ruling out any leadership ambitions in a recent interview with the New Statesman.However, she would represent a break from the Corbynite approach, albeit a more leftwing one than Dan Jarvis or Hilary Benn.

Local party chairs in no doubt that the shadow chancellor is profiling should another leadership election arise. One constituency chair noted to the New Statesman that: “you could tell who was going for it [last time], because they were desperate to speak [at events]”. Tom Watson, Caroline Flint, Chuka Umunna, Yvette Cooper, Andy Burnham and Liz Kendall all visited local parties across the country in preparation for their election bids in 2015.

Now, speaking to local party activists, four names are mentioned more than any other: Dan Jarvis, currently on the backbenches, but in whom the hopes – and the donations – of many who are disillusioned by the current leadership are invested, Gloria De Piero, who is touring the country as part of the party’s voter registration drive, her close ally Jon Ashworth, and John McDonnell.

Another close ally of Corbyn and McDonnell, who worked closely on the leadership election, is in no doubt that the shadow chancellor is gearing up for a run should the need arise.  “You remember when that nice Mr Watson went touring the country? Well, pay attention to John’s movements.”

As for his chances of success, McDonnell may well be even more popular among members than Corbyn himself. He is regularly at or near the top of LabourList's shadow cabinet rankings, and is frequently praised by members. Should he be able to secure the nominations to get on the ballot, an even bigger victory than that secured by Corbyn in September is not out of the question.

Stephen Bush is editor of the Staggers, the New Statesman’s political blog. He usually writes about politics.