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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But now prayer has been replaced by chemotherapy, surgery and radiotherapy – and the hope for angels in heaven by the bleak reality of hospitals and care assistants in nursing homes.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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We're racing towards another private debt crisis - so why did no one see it coming?

The Office for Budget Responsibility failed to foresee the rise in household debt. 

This is a call for a public inquiry on the current situation regarding private debt.

For almost a decade now, since 2007, we have been living a lie. And that lie is preparing to wreak havoc on our economy. If we do not create some kind of impartial forum to discuss what is actually happening, the results might well prove disastrous. 

The lie I am referring to is the idea that the financial crisis of 2008, and subsequent “Great Recession,” were caused by profligate government spending and subsequent public debt. The exact opposite is in fact the case. The crash happened because of dangerously high levels of private debt (a mortgage crisis specifically). And - this is the part we are not supposed to talk about—there is an inverse relation between public and private debt levels.

If the public sector reduces its debt, overall private sector debt goes up. That's what happened in the years leading up to 2008. Now austerity is making it happening again. And if we don't do something about it, the results will, inevitably, be another catastrophe.

The winners and losers of debt

These graphs show the relationship between public and private debt. They are both forecasts from the Office for Budget Responsibility, produced in 2015 and 2017. 

This is what the OBR was projecting what would happen around now back in 2015:

This year the OBR completely changed its forecast. This is how it now projects things are likely to turn out:

First, notice how both diagrams are symmetrical. What happens on top (that part of the economy that is in surplus) precisely mirrors what happens in the bottom (that part of the economy that is in deficit). This is called an “accounting identity.”

As in any ledger sheet, credits and debits have to match. The easiest way to understand this is to imagine there are just two actors, government, and the private sector. If the government borrows £100, and spends it, then the government has a debt of £100. But by spending, it has injected £100 more pounds into the private economy. In other words, -£100 for the government, +£100 for everyone else in the diagram. 

Similarly, if the government taxes someone for £100 , then the government is £100 richer but there’s £100 subtracted from the private economy (+£100 for government, -£100 for everybody else on the diagram).

So what implications does this kind of bookkeeping have for the overall economy? It means that if the government goes into surplus, then everyone else has to go into debt.

We tend to think of money as if it is a bunch of poker chips already lying around, but that’s not how it really works. Money has to be created. And money is created when banks make loans. Either the government borrows money and injects it into the economy, or private citizens borrow money from banks. Those banks don’t take the money from people’s savings or anywhere else, they just make it up. Anyone can write an IOU. But only banks are allowed to issue IOUs that the government will accept in payment for taxes. (In other words, there actually is a magic money tree. But only banks are allowed to use it.)

There are other factors. The UK has a huge trade deficit (blue), and that means the government (yellow) also has to run a deficit (print money, or more accurately, get banks to do it) to inject into the economy to pay for all those Chinese trainers, American iPads, and German cars. The total amount of money can also fluctuate. But the real point here is, the less the government is in debt, the more everyone else must be. Austerity measures will necessarily lead to rising levels of private debt. And this is exactly what has happened.

Now, if this seems to have very little to do with the way politicians talk about such matters, there's a simple reason: most politicians don’t actually know any of this. A recent survey showed 90 per cent of MPs don't even understand where money comes from (they think it's issued by the Royal Mint). In reality, debt is money. If no one owed anyone anything at all there would be no money and the economy would grind to a halt.

But of course debt has to be owed to someone. These charts show who owes what to whom.

The crisis in private debt

Bearing all this in mind, let's look at those diagrams again - keeping our eye particularly on the dark blue that represents household debt. In the first, 2015 version, the OBR duly noted that there was a substantial build-up of household debt in the years leading up to the crash of 2008. This is significant because it was the first time in British history that total household debts were higher than total household savings, and therefore the household sector itself was in deficit territory. (Corporations, at the same time, were raking in enormous profits.) But it also predicted this wouldn't happen again.

True, the OBR observed, austerity and the reduction of government deficits meant private debt levels would have to go up. However, the OBR economists insisted this wouldn't be a problem because the burden would fall not on households but on corporations. Business-friendly Tory policies would, they insisted, inspire a boom in corporate expansion, which would mean frenzied corporate borrowing (that huge red bulge below the line in the first diagram, which was supposed to eventually replace government deficits entirely). Ordinary households would have little or nothing to worry about.

This was total fantasy. No such frenzied boom took place.

In the second diagram, two years later, the OBR is forced to acknowledge this. Corporations are just raking in the profits and sitting on them. The household sector, on the other hand, is a rolling catastrophe. Austerity has meant falling wages, less government spending on social services (or anything else), and higher de facto taxes. This puts the squeeze on household budgets and people are forced to borrow. As a result, not only are households in overall deficit for the second time in British history, the situation is actually worse than it was in the years leading up to 2008.

And remember: it was a mortgage crisis that set off the 2008 crash, which almost destroyed the world economy and plunged millions into penury. Not a crisis in public debt. A crisis in private debt.

An inquiry

In 2015, around the time the original OBR predictions came out, I wrote an essay in the Guardian predicting that austerity and budget-balancing would create a disastrous crisis in private debt. Now it's so clearly, unmistakably, happening that even the OBR cannot deny it.

I believe the time has come for there be a public investigation - a formal public inquiry, in fact - into how this could be allowed to happen. After the 2008 crash, at least the economists in Treasury and the Bank of England could plausibly claim they hadn't completely understood the relation between private debt and financial instability. Now they simply have no excuse.

What on earth is an institution called the “Office for Budget Responsibility” credulously imagining corporate borrowing binges in order to suggest the government will balance the budget to no ill effects? How responsible is that? Even the second chart is extremely odd. Up to 2017, the top and bottom of the diagram are exact mirrors of one another, as they ought to be. However, in the projected future after 2017, the section below the line is much smaller than the section above, apparently seriously understating the amount both of future government, and future private, debt. In other words, the numbers don't add up.

The OBR told the New Statesman ​that it was not aware of any errors in its 2015 forecast for corporate sector net lending, and that the forecast was based on the available data. It said the forecast for business investment has been revised down because of the uncertainty created by Brexit. 

Still, if the “Office of Budget Responsibility” was true to its name, it should be sounding off the alarm bells right about now. So far all we've got is one mention of private debt and a mild warning about the rise of personal debt from the Bank of England, which did not however connect the problem to austerity, and one fairly strong statement from a maverick columnist in the Daily Mail. Otherwise, silence. 

The only plausible explanation is that institutions like the Treasury, OBR, and to a degree as well the Bank of England can't, by definition, warn against the dangers of austerity, however alarming the situation, because they have been set up the way they have in order to justify austerity. It's important to emphasise that most professional economists have never supported Conservative policies in this regard. The policy was adopted because it was convenient to politicians; institutions were set up in order to support it; economists were hired in order to come up with arguments for austerity, rather than to judge whether it would be a good idea. At present, this situation has led us to the brink of disaster.

The last time there was a financial crash, the Queen famously asked: why was no one able to foresee this? We now have the tools. Perhaps the most important task for a public inquiry will be to finally ask: what is the real purpose of the institutions that are supposed to foresee such matters, to what degree have they been politicised, and what would it take to turn them back into institutions that can at least inform us if we're staring into the lights of an oncoming train?