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But now prayer has been replaced by chemotherapy, surgery and radiotherapy – and the hope for angels in heaven by the bleak reality of hospitals and care assistants in nursing homes.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

Is the charismatic Canadian Prime Minister modelling the party of the future?

Six months after Canadian election day, Justin Trudeau’s Liberal party continues to bask in the glow of victory. With 44 per cent of support in the polls, the Liberals are the most popular party amongst every single demographic – men and women, young and old, and people of all educational backgrounds. 

While most European mainstream parties only dream of such approval, this is actually a small dip for the Liberals. They were enjoying almost 50 per cent support in the polls up until budget day on 21 March. Even after announcing $29.4 billion in deficit spending, Canadians overall viewed the budget favourably – only 34 per cent said they would vote to defeat it.

Progressives around the world are suddenly intrigued by Canadian politics. Why is Justin Trudeau so successful?

Of course it helps that the new Prime Minister is young, handsome and loves pandas (who doesn’t?) But it’s also true that he was leader of the Liberals for a year and half before the election. He brought with him an initial surge in support for the party. But he also oversaw its steady decline in the lead up to last year’s election – leadership is important, but clearly it isn’t the only factor behind the Liberals’ success today.

Context matters

As disappointing as it is for Europeans seeking to unpack Canadian secrets, the truth is that a large part of the Liberals’ success was also down to the former Prime Minister Stephen Harper’s extreme unpopularity by election time.

Throughout almost ten years in power, Harper shifted Canada markedly to the right. His Conservative government did not just alter policies; it started changing the rules of the democratic game. While centre-right governments in Europe may be implementing policies that progressives dislike, they are nonetheless operating within the constraints of democratic systems (for the most part; Hungary and Poland are exceptions).

Which is why the first weeks of the election campaign were dominated by an ‘Anybody But Harper’ sentiment, benefitting both the Liberals and the left-wing New Democratic Party (NDP). The NDP was even leading the polls for a while, inviting pundits to consider the possibility of a hung parliament.

But eight days before election day, the Liberals began to pull ahead.

The most important reason – and why they continue to be so popular today – is that they were able to own the mantle of ‘change’. They were the only party to promise running a (small) deficit and invest heavily in infrastructure. Notably absent was abstract discourse about tackling inequality. Trudeau’s plan was about fairness for the middle class, promoting social justice and economic growth.

Democratic reform was also a core feature of the Liberal campaign, which the party has maintained in government – Trudeau appointed a new Minister of Democratic Institutions and promised a change in the voting system before the next election.

The change has also been in style, however. Justin Trudeau is rebranding Canada as an open, progressive, plural society. Even though this was Canada’s reputation pre-Harper, it is not as simple as turning back the clock.

In a world increasingly taken by populist rhetoric on immigration – not just by politicians like Donald Trump, Nigel Farage, Marine Le Pen and other right-wingers, but also increasingly by mainstream politicians of right and left – Justin Trudeau has been unashamedly proclaiming the benefits of living in a diverse, plural society. He repeatedly calls himself a feminist, in the hope that one day “it is met with a shrug” rather than a social media explosion. Live-streamed Global Town Halls are one part of a renewed openness with the media. Progressive politicians in Europe would do well to take note.

Questioning the role of political parties today

Another interesting development is that the Liberal party is implicitly questioning the point of parties today. It recently abolished fee-paying, card-carrying party members. While this has been met with some criticism regarding the party’s structure and integrity, with commentators worried that “it’s the equivalent of turning your party into one giant Facebook page: Click ‘Like’ and you’re in the club,” it seems this is the point.

Colin Horgan, one of Trudeau’s former speechwriters, explains that Facebook is “literally a treasure trove for political parties”. All kinds of information becomes available – for free; supporters become easier to contact.

It was something the Liberals were already hinting at two years ago when they introduced a ‘supporters’ category to make the party appear more open. Liberal president Anna Gainey also used the word “movement” to describe what the Liberals hope to be.

And yes, they are trying to win over millennials. Which proved to be a good strategy, as a new study shows that Canadians aged 18-25 were a key reason why the Liberals won a majority. Young voter turnout was up by 12 per cent from the last election in 2011; among this age group, 45 per cent voted for the Liberals.

Some interesting questions for European progressives to consider. Of course, some of the newer political parties in Europe have already been experimenting with looser membership structures and less hierarchical ways of engaging, like Podemos’ ‘circles’ in Spain and the Five Star Movement’s ‘liquid democracy’ in Italy.

The British centre-left may be hesitant after its recent fiasco. Labour opened up its leadership primary to ‘supporters’ and ended up with a polarising leader who is extremely popular amongst members, but unpopular amongst the British public. But it would be wrong to assume that the process was to blame.

The better comparison is perhaps to Emmanuel Macron, France’s young economy minister who recently launched his own movement ‘En Marche !’ Moving beyond the traditional party structure, he is attempting to unite ‘right’ and ‘left’ by inspiring French people with an optimistic vision of the future. Time will tell whether this works to engage people in the longer term, or at least until next year’s presidential election.

In any case, European parties could start by asking themselves: What kind of political parties are they? What is the point of them?

Most importantly: What do they want people to think is the point of them?

Ultimately, the Canadian Liberals’ model of success rests on three main pillars:

  1. They unambiguously promote and defend a progressive, open, plural vision of society.
  2. They have a coherent economic plan focused on social justice and economic growth which, most importantly, they are trusted to deliver.
  3. They understand that society has changed – people are more interconnected than ever, relationships are less hierarchical and networks exist online – and they are adapting a once rigid party structure into a looser, open movement to reflect that.

*And as a bonus, a young, charismatic leader doesn’t hurt either.

Claudia Chwalisz is a Senior Policy Researcher at Policy Network, a Crook Public Service Fellow at the University of Sheffield and author of The Populist Signal: Why Politics and Democracy Need to Change