by David Boyle
Dr James Hillman, The Soul’s Code
Where is the wisdom we have lost in knowledge, and the knowledge we have lost in information?
Dr Richard Smith, paraphrasing T. S. Eliot, in a British Medical Journal editorial, 1991
I
The psychologist Lesley Fallowfield sat through the final illness of her friend, who died of leukaemia in her early thirties, then blasted the medical profession for their failure to look at people’s emotional needs. The therapy had been unsuccessful with unpleasant side effects, and to make matters worse, they could only communicate through a disconcerting plastic window. ‘Thus one of the most intelligent, sensitive, warm and generous-hearted people I have ever known spent some of her final weeks cut off from physical contact with most of her family and friends,’ she wrote. ‘I am still haunted by the last conversation we had, when she asked why I had not tried to dissuade her from a therapy with poor chances of survival, but a high chance of destroying the quality of whatever life she had left.’
Medicine and psychiatry are worlds where measurement has taken over more than most. Doctors will wire you up to machines, just as they used to read the charts at the end of your bed. You can hear them shouting out the figures on ER as they push the patients into hospital on their trolleys. Psychiatrists will often now use their own psychometric diagnoses, sometimes without even looking you in the eye while they tick the checklists. Single symptoms, blood counts, heart rates can be measured. But taken together, the figures will always miss something out.
The problem is that – despite the fact that emotions can have an enormous effect on our immune systems – some doctors ignore them, except as irritating disease-causing complications, just as economists do, because they do not fall under the list of things they find it easy to measure. Yet distressing emotions have a similar risk to health as smoking or eating butter and greasy chips stuffed with cholesterol. We are five times more likely to develop cancer if we are stressed, twice as likely to get colds if we are anxious, and five times more likely to die after a heart attack if we are depressed. That’s what the figures say, if we believe them.
Given that, asked an editorial in the Journal of the American Medical Association, don’t medical ethics mean that doctors should at least try to get a handle on emotions? Instead, Lesley Fallowfield’s search turned up what she called ‘ludicrously narrow’ definitions of quality of life in the medical profession. The Karnofsky Performance Index of 1947 developed a way of working out how many nurses you might need on a ward, which scores people’s health between 100 and 0. If you get 0, you’re dead. Breast cancer patients score 80, whether they are bouncing with enthusiasm or crippled with depressive illness.
There have been many more attempts since then, from the Functional Living Index to the Rotterdam Symptom Checklist. There are other methods of getting patients to sum up what they feel, from the ‘SF-36 General Health Questionnaire’ to the ‘McMaster Health Utilities Questionnaire’, but still doctors usually prefer to ‘do something’ rather than not – even if it might seriously undermine a patient’s remaining quality of life. But then, if you believe the figures, medical students are more scared of death than average. Whose preferences are these analyses really measuring: the patient’s, the doctor’s or the health economist’s?
If it’s the health economists, they use QALYs – the so-called quality adjusted life years – which modern health economists use to work out who their scarce resources should go towards treating. But when you look more closely at the basis for the research, you wonder whether these are actually the kinds of trade-offs people make in their own minds. People would often actually trade a shorter life for better health. QALYS also tend to be based on interviews with relatively few patients, who are asked to rank different states of illness and what they feel about having them. Small differences in the sample make big differences in the policy. And in any case, who ever heard of the Fire Brigade or the lifeboats checking up people’s QALYs before turning on the siren?
The counting obsession has caused the same crisis among doctors as it has everywhere else, as the supporters of ‘evidence-based medicine’ – cold hard measuring followed by logical diagnosis – slug it out with their critics. Trisha Greenhalgh, from the Royal Free Hospital Medical School in London, tells the story of ‘Dr Jenkins’ hunch’, breaking off his Monday morning surgery because a mother called to say her little girl had diarrhoea and was behaving ‘strangely’. He would never normally break off from a busy surgery. How could he know, using the available evidence, that the girl had meningitis? But she did. Maybe the word ‘strangely’ alerted him. Maybe he knew the family and they rarely complained. But it wasn’t the cold facts and risks that told him, it was the story.
Medical students can write long learned essays about the risks and competing treatments for high blood pressure, but that’s not enough, says Greenhalgh. ‘When I ask my students a practical question such as “Mrs Jones has developed lightheadedness on these blood pressure tablets and she wants to stop all medication; what would you advise her to do?”, they are foxed. They sympathize with Mrs Jones’ predicament, but they cannot distill from their pages of close-written text the one thing that Mrs Jones needs to know.’ Who can blame them? Which of us can distill from the piles of research figures about health risks what we should embrace and what we should avoid?
There is a growing sense in medicine that you can’t treat patients as if they were average risks, in the same way you can treat cattle or buy stock. You can’t offset one risk with another: you have to listen to each patient as an individual, and get at the truth each time. Greenhalgh calls this listening to patients’ stories ‘narrative-based medicine’.
Of course doctors need to count. They need to confirm hunches and, of course, to make sure their drugs won’t have weird side effects – which is why the average new drug requires 100 research projects, takes between twelve and twenty-four years to bring to market and costs at least £350 million to develop. Though you should remember that one of the other peculiarities of the quantum effect is that what you look for in research, you tend to find. But then doctors have been running up against the same mismatch of measurements as the economists have. People might be rich and healthy, so there shouldn’t be anything wrong with them. But there was. They weren’t happy.
But then, how do you measure happiness, either as a doctor or an economist? For one thing, it’s so difficult to compare – especially when, according to one Danish study, ‘the life of the average Dane is to a large extent confused, stressful, alienated and isolated’. For Dane, read ‘most of us’ – though actually, the massive Eurobarometer project found that 55 per cent of Danes were ‘very satisfied’ with life, compared to 10 per cent of French and Italians (and around a third of Brits).
For another thing, physiologically anyway, happiness and misery are not opposites. They are dealt with by different parts of the brain and have to be measured in different ways.
There’s the problem of the Dutch proverb: ‘an ounce of illness is felt more than a hundredweight of health’. Happiness and unhappiness are qualities that are so paradoxical that they slip through your fingers every time you get out the ruler. Take the example of the writer and concentration camp survivor Primo Levi, who described how people found something to sustain them emotionally even in Auschwitz. Even at their lowest point, with nothing to look forward to, he says, they told themselves they could stop it raining just by running over to the electric fence. That sense of choice in the face of such devastating adversity was sometimes enough to keep them going. It made them feel a little better knowing they could end it all. But try measuring happiness in that kind of laboratory. You can’t. It’s too human.
Statistics prove we are getting our measurements wrong, yet we should be suspicious of too many numbers. Both assertions are true. It’s just that, even with these moral statistics sprinkled about, you have to keep your fingers crossed. The figures get worse the more we worry about them.
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br /> For example, what do we make of the statistics which say there are now five million Britons who will suffer from depression some time in their lives? Why, as Oliver James puts it, do ‘winners in society now feel like losers?’ Is it that depression is really increasing or is it that drug companies are looking for a market for antidepressants? The whole idea of antidepressants was nearly canned by marketing experts in the 1960s because depression was such a rare disorder. In those days, they were developing Valium to tackle anxiety instead. Now anxiety is unfashionable and we’re awash with Prozac.
It was the same with obsessive compulsive disorder. In 1980, the estimates were that people obsessively washing their hands or checking their front door accounted for less than 0.01 per cent of the UK population. Now it’s estimated at over one million people. Are these enormous shifts really to do with a tidal wave of misery? Or is it something to do with subtle marketing, journal supplements and conferences on the subject, sponsored by drug companies? Or is it because we have only just become sensitive enough to see what was always under our noses? Or is it again the peculiar effect, that what frightens society most tends to happen? Whatever it is, we would not necessarily learn anything from the statistics, but we can recognize an underlying sense of unease.
II
Happiness isn’t just a problem for medical figures; it’s a problem for politicians and economists. I heard this once in an unexpected cri de coeur from a British Home Office minister. Virginia Bottomley explained that up to 93 per cent of the British population now had colour televisions, washing machines and freezers. That covered people of all classes, paying their own way and on welfare. It was an extraordinary achievement, she said – adding suddenly and off-message: ‘Why on earth isn’t everybody happy?’
I noted it down on the back of an envelope. It seemed to go to the heart of the unease at the time, because the usual measurements of success, for politicians in particular, had let them down so disastrously. People were having two foreign holidays a year, their house prices were rising fast, but people just weren’t happy. The political press dubbed what was missing as the ‘feelgood factor’.
This elusive, unmeasurable, indefinable factor became one of the key issues of the early years of John Major’s premiership in Britain. Commentators discovered, as if for the first time, the terrifying figures of feelbad. There were 10,000 calls a day to the child advice phone service Childline, rising divorce and male suicide rates – three out of four bodies fished out of the River Thames are men, and five men in the UK attempt suicide every day. Academics were also stalking the pages of the broadsheets talking about a crisis of parenting. ‘Governments must encourage parenthood of the highest quality,’ wrote the respected social scientist A. H. Halsey after the 1990 riots. But how? And how could it be measured?
People seemed to be so angry. It wasn’t just stories like Marlene Lenick, who shot her husband with a .38 because he wanted to watch the Philadelphia Eagles match when she wanted to watch the news. People were also needy. Bookshelves bulged with the weight of self-help titles like Feel the Fear and Do it Anyway. And when the marriage guidance organization Relate opened an office in a GP’s surgery in the middle of London’s commuter belt, at South Woodham Ferrers in Essex in 1991, there was a sudden enormous demand for free 45-minute sessions with a psychologist for stress or loneliness. Within two months, the office had been so overwhelmed that it had to close altogether.
Maybe it was always thus. Maybe nobody had noticed before. But the emotional toll on the richest people in the world seemed to be landing most heavily on children, and that felt new. Suddenly one in 20 British children was suffering from depression or anxiety so badly they needed professional help – including one in 50 in primary schools. Between 1 and 2 per cent of all British schoolchildren had anorexia. As many as half the long-term absences of schoolchildren from school were because they feel inexplicably tired all the time.
Then there were the diets. Suddenly girls of just eight or nine were worrying about their weight. The British Association for the Advancement of Science was told in 1996 that the girls most aware of diets also had the lowest self-esteem. Leeds University’s Dr Andrew Hill blamed Sindy dolls and their ultra-thin bodies. ‘Why pick on Sindy?’ said a spokesman for the manufacturers Hasbro. ‘An eleven and a half inch piece of plastic is not responsible for the ills of today’s society.’
But who was? Step forward the three main contenders – school pressures, rising divorce rates and the consumer society.
Describing her affluent town in Connecticut as a place that expects children to do well, columnist Anne-Marie Sapsted went on to outline a school system which puts enormous pressures on children from an early age. This is a place where eight-year-olds have an hour’s homework every night and formal tests in each area of school work every week – and where they have such busy diaries filled with CV-building after-school activities that ‘windows’ for play are often a week or so apart.
Which brings us to the second contender. A recent survey at Leicester University showed that up to 40 per cent of the students were suffering from depression. One counsellor said it was probably something to do with family breakdown. Many of them had absolutely nowhere of their own to go at the end of term.
The Divorce Reform Act 1969 ushered in a whole new era of relatively easy separations, and the number of divorces in the UK doubled over the next decade. In the USA, the chances of divorce for married couples was 67 per cent by 1990. A decade later, it now only takes 20 minutes to produce the papers needed for a divorce through the US QuickCourt interactive computer system. Divorce can have a devastating effect on children. Children of divorced parents are more likely to get into trouble, perform badly in school, get stress-related illness and get divorced themselves. When the novelist Joanna Trollope researched her novel Other People’s Children, she said she had never come across so much hidden pain.
Which leaves us with the pressures of a consumer society. By the time they are seven, the average American child will be seeing 20,000 advertisements a year on television. By the time they are 12 they will have an entry in the massive marketing databases used by companies. And as corporations realize the spending power of children, so the efforts to get at their money increase. Advertising to children increased by 50 per cent between 1993 and 1996, with movies, sneakers and hamburger wrappers all linked together as part of the elaborate child marketing system. By 1997, partly thanks to Batman, Hercules and Star Wars, up to half the spending on toys went on those licensed from TV or films.
According to the poet Robert Bly, children have to develop such a powerful critical sense to resist all this wanting that they eventually turn it on themselves. No wonder they are miserable. The awful thing is that the different measures of success actually contradict each other on this. Society is ‘successful’ if you use the conventional measure – money. But there is more money around because of the break-up of family life. A Ford UK executive recently admitted that divorce boosts car sales. Broken families also need two houses instead of one, so it pushes up house prices. And the toy trade certainly benefits: many children need duplicate toys – one for each home. Some measures of success hide other kinds of failure.
The communitarian Amitai Etzioni tells the story of American truck driver Rod Grimm, delivering his lorry-loads from Los Angeles to Maine. His work keeps him on the road 340 days a year, so his wife moved into the cab with him, their friendships have been reduced to occasional encounters and their relationship with the daughter to a cellphone link. Yet the economic measures see all the money he’s earning and register this as a success.
Despite all the measures of success which are dashing off the scale, showing that our children are richer, smarter and healthier than any generation before them, the present generation in the West is also more lonely, angry, miserable, aggressive and depressed. We demonstrate that mismatch with the use of figures – of depression, suicide and alienation – without which we would carry on, on our own sweet
way regardless. When you break away from one solitary measure of success, you do get closer to the truth.
Maybe the number-crunchers will one day prove exactly where the problem lies, but I doubt it. Real problems about real people don’t usually have one single root. And even if they do, you can measure the causes next to the effects – as we’ve seen – but it’s extremely hard to disentangle them enough to see which is which. Not without falling back on good old-fashioned common sense and intuition.
The point is that fundamental problems like unhappiness can’t be measured. They just have to be experienced. Or as the French novelist and aviator Antoine de Saint-Exupéry wrote in The Little Prince: ‘It is with the heart that one sees rightly. What is essential is invisible to the eye.’
III
John Vasconcellos is one of the first to take the feelgood debate somewhere political, taking it a little further than the usual cliches about ‘family values’ – pioneering an attempt to measure what’s really important. If lack of self-esteem lies behind a range of intractable social issues, he reasoned, how can we hammer out a political programme to do something about it? Nobody had asked the question before. Coinciding with the angst on both sides of the Atlantic about why people were wealthier but more disturbed, Vasconcellos’ initiative has fed into a whole new way of thinking about how institutions like schools and prisons succeed; and how we can measure whether they do.
Vasconcellos is difficult to categorize. Some dismiss him as a refugee from the 60s – though he is also the elected representative of Santa Clara, including Silicon Valley, which makes him bang up to date. They dismiss him as a shaggy branch of the new age movement too, but as chairman of California’s Ways and Means Committee (responsible for balancing the state’s budget) he has also had to be pretty down to earth. The local media has always gone heavy on his appearance, more like a cross between a rock star and a drug smuggler, according to one magazine. ‘I mean worn loafers,’ wrote one interviewer about his shoes – this is a nation where politicians wear hairpieces and not a piece is out of place. ‘I mean, I got a higher shine on my worn loafers than he’s got on his loafers and the last time my loafers shined, the Village People were still going strong.’
