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But now prayer has been replaced by chemotherapy, surgery and radiotherapy – and the hope for angels in heaven by the bleak reality of hospitals and care assistants in nursing homes.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

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Chuka Umunna calls for "solidarity" among Labour MPs, whoever is voted leader

The full text of shadow business secretary Chuka Umunna's speech to Policy Network on election-winning ideas for Labour's future, and the weaknesses of the New Labour project.

There has never been an easy time to be a social democrat (or “democratic socialist” as we sometimes call ourselves in Britain). Whereas the right can demonise the poor and extol the virtues of the market, and the hard left can demonise the market and extol the role of the state, our position of constraining the domination of markets and reforming the state is, by definition, more complex.

It is nonetheless the case that social democracy has a historic responsibility, in every generation, to renew democracy and preserve a civic culture. This is achieved not through soundbites and slogans, but through the hard-headed development of a progressive politics that reconciles liberty and democracy, new comers and locals to our communities, business and workers, in a common life that preserves security, prosperity and peace.  This historic mission is all the more urgent now and my determination that we succeed has grown not weakened since our election defeat last May.

But, in order to be heard, it is necessary to make balanced and reasonable argument that both animates and inspires our movement, and which is popular and plausible with the people.  The first is pre-requisite to the second; and there is no choice to be made between your party’s fundamental principles and electability. They are mutually dependent - you cannot do one without the other.

We are in the midst of choosing a new leader and it is clear to anyone who has watched the UK Labour Party leadership election this summer that amongst a significant number there is a profound rage against Third Way politics – as pursued by the likes of Bill Clinton, Tony Blair, Gerhard Schröder and others - as a rejection of our fundamental values.

In the UK there is a view that New Labour accepted an uncritical accommodation with global capital that widened inequality, weakened organised labour and we were too close to the US Republicans and too far from the European left.

I do not believe this is fair, not least because we rescued many of our public services from the scrap heap when we came to office in 1997 and there were very significant achievements  we should celebrate.  New Labour renewed our National Health Service in a fundamental way; we built new schools and improved existing ones; we set up new children’s centres all over the country; we brought in a National Minimum Wage; we worked with others to bring peace to Northern Ireland; we introduced civil partnerships.  Just some of our achievements.

However, though we may take issue with the critique, I do not think we can simply dismiss out of hand those who hold critical views of New Labour. Like any government, the New Labour administration made mistakes - it could and should have achieved more, and done more to challenge the Right’s assumptions about the world. In the end, it is not unreasonable to be ambitious for what your party in government can achieve in building greater equality, liberty, democracy and sustainability. It is far better we acknowledge, not reject, this ambition for a better world, as we seek to forge a new politics of the common good fit for the future.

Realising our values in office has been disrupted by globalisation and the surge of technological forces that are displacing and reshaping industry after industry.

Some argue that globalisation as an ideological construct of the right. But we must recognise that we live in an increasingly integrated world in which markets have led to an unprecedented participation of excluded people in prosperity, a rise in living standards for hundreds of millions  of people and a literacy unprecedented in human history – this is particularly so in emerging economies like my father’s native Nigeria. And the internet has led to a level of accountability that has disturbed elites.

Yet, this has been combined with a concentration of ownership that needs to be challenged, of a subordination of politics that requires creative rather than reactive thinking, and these global forces have exacerbated inequalities as well as helped reduce poverty.

So it is important that we understand the sheer scale and impact of new technologies. At the moment we are engaged in a debate about Uber and its threat to one of the last vestiges of vocational labour markets left in London, those of the black taxi cabs and their attainment of 'The Knowledge'. But the reality is that within the next decade there will be the emergence of driverless cars so we have to intensify our exploration of how to support people in a knowledge economy and the realities of lifelong learning, as well as lifelong teaching. As people live longer we will have to think about how to engage them constructively in work and teaching in new ways.

Once again, I'm addressing all of this, Social Democracy requires a balanced view that domesticates the destructive energy of capital while recognising its creative energy, that recognises the need for new skills rather than simply the protection of old ones. A Social Democracy that recognises that internationalism requires co-operation between states and not a zero sum game that protectionism would encourage.

Above all, Social Democratic politics must recognise the importance of place, of the resources to be found in the local through which the pressures of globalisation can be mediated and shaped. Our job is to shape the future and neither to accept it as a passive fate nor to indulge the fantasy that we can dominate it but to work with the grain of change in order to renew our tradition, recognising the creativity of the workforce, the benefits of democracy and the importance of building a common life.  Sources of value are to be found in local traditions and institutions.

This also requires a recognition that though demonstration and protest are important,; but relationships and conversations are a far more effective way of building a movement for political change.

One of the huge weaknesses of New Labour was in its reliance on mobilisation from the centre rather than organising. It therefore allowed itself to be characterised as an elite project with wide popular support but it did not build a base for its support within the party across the country, and it did not develop leaders from the communities it represented. It was strong on policy but weak on strengthening democratic politics, particularly Labour politics.

Over half a million people are now members, supporters or affiliated supporters of our party, with hundreds of thousands joining in the last few weeks. Some have joined in order to thwart the pursuit of Labour values but many more have joined to further the pursuit of those values, including lots of young people. At a time when so many are walking away from centre left parties across the Western world and many young people do not vote let alone join a party, this is surely something to celebrate.

So it is vital that we now embrace our new joiners and harness the energy they can bring to renewing Labour’s connection with the people. First, we must help as many them as possible to become doorstep activists for our politics. Second, I have long argued UK Labour should campaign and organise not only to win elections but to affect tangible change through local community campaigns. We brought Arnie Graf, the Chicago community organiser who mentored President Obama in his early years, over from the U.S. to help teach us how to community organise more effectively. We should bring Arnie back over to finish the job and help empower our new joiners to be the change they want to see in every community – we need to build on the links they have with local groups and organisations.

I mentioned at the beginning that in every generation Social Democracy is besieged from left and right but the achievements of each generation are defined by the strength of a complex political tradition that strengthens solidarity through protecting democracy and liberty, a role for the state and the market and seeks to shape the future through an inclusive politics. Solidarity is key which is why we must accept the result of our contest when it comes and support our new leader in developing an agenda that can return Labour to office.

Yes, these are troubled times for social democrats. All over Europe there is a sense among our traditional voters that we are remote and do not share their concerns or represent their interests or values.  There is surge of support for populist right wing parties from Denmark to France, of more left wing parties in Greece and Spain and in Britain too. There is renewal of imperial politics in Russia, the murderous and abhorrent regime of ISIL in the Middle East, volatility in the Chinese economy and in Europe a flow of immigration that causes fear and anxiety.

But, the task of Social Democracy in our time is to fashion a politics of hope that can bring together divided populations around justice, peace and prosperity so that we can govern ourselves democratically. We have seen worse than this and weathered the storm. I am looking forward, with great optimism to be being part of a generation that renews our relevance and popularity in the years to come.

Chuka Umunna is the shadow business secretary and the Labour MP for Streatham.