What is quality of life?

The challenge of deciding how we should decide who deserves treatment from an NHS of finite resource

It cannot be an easy or pleasant job to inform terminally ill cancer patients they will be denied access to effective drugs that have the capacity to extend their lives by months or years.

Moreover, in a society with a publicly funded health service, it is particularly difficult to justify the denial of effective treatment to patients who have paid their taxes, over their working lifetimes, in expectation that they will have access to high quality medical treatment if they fall ill.

Just such an unpleasant, difficult and controversial task has just been carried out by Professor Peter Littlejohns, the clinical director of the National Institute for Health and Clinical Excellence (NICE).

Littlejohns has released a preliminary ruling, denying access to the drugs Sutent, Avastin, Nexavar and Torisel to patients with advanced metastatic kidney cancer. These patients will, on average, die months earlier than those with the same condition in other countries in Europe where such drugs are available.

How can NICE justify its refusal to allow these patients a few extra months of life? Its methodology looks at the cost-effectiveness of medical treatments in terms of cost per extra 'quality-adjusted life year' (QALY).

If a drug or other treatment delivers an extra QALY at roughly £20,000 or less, then the treatment is judged to be cost-effective, and hence recommended. If the sums come out less favourably, then NICE decides against making that drug or treatment available on the NHS.

Although the system has some room for other considerations and can be responsive to special cases, this procedure strikes many as frighteningly cold-hearted and mechanistic. In matters of life and death, these sorts of accountants' calculations can seem cruel and out-of-place.

But what could the alternatives be? The alternative of leaving decisions to the judgement of individual hospital trusts or medical teams has little to recommend it. Firstly, it is difficult to justify a policy that depends on subjective individual judgements. Unless there are explicit public guidelines, like those followed by NICE, it is impossible to see how decisions over health-rationing could possibly be justified to those affected.

Secondly, if such decisions are made locally rather than nationally, we are thrown into the familiar problems of the 'post-code lottery'. A patient in Nottingham may find herself denied treatment that is provided to someone in Newcastle. Allowing matters of life and death to depend on the good or bad luck of geographical location seems like the very opposite of finding justifiable policies.

Another alternative might simply be to fund all medically effective treatments. But this aim would be impossible to realise. One could, after all, always produce some small marginal gain in expected QALYs with a limitlessly expandable healthcare budget.

It may be that, even with the massive increases in the NHS budget over the last eleven years of Labour government, we still do not spend enough on health care. In the UK, we spend somewhere between nine to 10 per cent of our GDP, as against other advanced countries (for example, France and
Germany) which spend nearer to 11 per cent. (Whereas before 1997, Britain spent under seven per cent of its GDP on healthcare.) But no matter how large a proportion of GDP we spend, we would still face budgetary constraints.

Hard choices have to be made: funding certain treatments will always mean not funding others.

Perhaps NICE has found the least objectionable way of performing an unenviable task. But there are potential problems with its QALY-based methodology. First of all, there is the very idea of 'quality-adjusting' a year of life. The intuitive idea is that a year of pain-free, high-functioning life is better than a year of painful, highly limited living. This seems plausible enough, but it is notoriously difficult to make judgements of 'quality of life' in any kind of fine-grained way. Some patients may consider another year of life to be of enormous value, no matter what its pains or indignities.

The calculus of QALYs can also lead to some strange decisions. For example, giving an extra 10 years of healthy life to a 15 year old would be weighed identically to giving 10 years of life to a 65 year old. But, looking beyond QALYs, most people would think it right to favour the younger patient over the older. The QALY approach had no room for these ideas of a 'fair innings'.

It can also find no room for favouring those already suffering from other forms of disadvantage over those who are otherwise advantaged.

Indeed, the QALY-approach will favour a treatment that gives X additional years of life to a 30 year-old able-bodied person, rather than X additional years to a 30 year-old disabled person, which seems quite unjust. A more just system might also give more emphasis to the diseases of the poor over the diseases of the wealthy.

We should also bear in mind that the costs of various drug treatments are not entirely fixed. Instead, those costs often depend on the price levels that profit-maximising pharmaceutical companies think they can get away with. Many pharmaceutical companies spend vast sums on the questionable practice of direct marketing to doctors, as well as funding partisan or self-serving forms of research, all of which push up the prices paid by the NHS.

Bob Essner, the CEO of Wyeth (which makes Torisel) took home $24.1 million in pay in 2007, while Jeff Kindler of Pfizer (makers of Sutent) made $12.6 million. The cost per-QALY of these drugs could no doubt be reduced if they didn't have to generate the obscene salaries of corporate fat cats like these.

NICE's QALY-based approach is a useful tool, creating the possibility of publicly justifiable decisions over healthcare rationing. But we should not lose sight of the broader regulatory context when considering how the NHS should apportion its spending on drugs. There is little doubt that a more responsible and better regulated pharmaceutical industry would mean NICE had fewer tough choices to make.

Perhaps the most interesting aspect of a QALY-based approach, though, is what it can tell us about broader issues of government policy and health outcomes. For, it turns out, what really makes a difference to the number of QALYs that individuals can look forward to depends more on factors like diet, exercise and early detection of disease, rather than the availability of expensive pharmaceuticals.

Following NICE's procedures to their full conclusion would suggest a massive move towards a pro-active rather than a reactive NHS, with more resources devoted to screening and public health measures, rather than to the treatment of those who are already nearing the end of their lives.

Moreover, as public health researchers like Sir Michael Marmot, Richard Wilkinson and Ichiro Kawachi have discovered, social inequalities have a massive impact on life-expectancy (and hence on QALYs).

More egalitarian societies, like Sweden, Denmark and Iceland, have higher average life-expectancies, even when controlling for all other factors, than do less just societies like the UK.

Indeed, as inequalities go on rising in the US, average life-expectancy is actually falling there for the very first time.

So, if NICE's approach has much to recommend it, it leads us to the conclusion that a concern with the health of our society leads us beyond thinking only about the NHS, but encompasses much broader policies for securing social justice.

Martin O’Neill is a political philosopher, based at the Centre for Political Theory in the Department of Politics at the University of Manchester. He has previously taught at Cambridge and Harvard, and is writing a book on Corporations and Social Justice.
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Fitter, dumber, more productive

How the craze for Apple Watches, Fitbits and other wearable tech devices revives the old and discredited science of behaviourism.

When Tim Cook unveiled the latest operating system for the Apple Watch in June, he described the product in a remarkable way. This is no longer just a wrist-mounted gadget for checking your email and social media notifications; it is now “the ultimate device for a healthy life”.

With the watch’s fitness-tracking and heart rate-sensor features to the fore, Cook explained how its Activity and Workout apps have been retooled to provide greater “motivation”. A new Breathe app encourages the user to take time out during the day for deep breathing sessions. Oh yes, this watch has an app that notifies you when it’s time to breathe. The paradox is that if you have zero motivation and don’t know when to breathe in the first place, you probably won’t survive long enough to buy an Apple Watch.

The watch and its marketing are emblematic of how the tech trend is moving beyond mere fitness tracking into what might one call quality-of-life tracking and algorithmic hacking of the quality of consciousness. A couple of years ago I road-tested a brainwave-sensing headband, called the Muse, which promises to help you quiet your mind and achieve “focus” by concentrating on your breathing as it provides aural feedback over earphones, in the form of the sound of wind at a beach. I found it turned me, for a while, into a kind of placid zombie with no useful “focus” at all.

A newer product even aims to hack sleep – that productivity wasteland, which, according to the art historian and essayist Jonathan Crary’s book 24/7: Late Capitalism and the Ends of Sleep, is an affront to the foundations of capitalism. So buy an “intelligent sleep mask” called the Neuroon to analyse the quality of your sleep at night and help you perform more productively come morning. “Knowledge is power!” it promises. “Sleep analytics gathers your body’s sleep data and uses it to help you sleep smarter!” (But isn’t one of the great things about sleep that, while you’re asleep, you are perfectly stupid?)

The Neuroon will also help you enjoy technologically assisted “power naps” during the day to combat “lack of energy”, “fatigue”, “mental exhaustion” and “insomnia”. When it comes to quality of sleep, of course, numerous studies suggest that late-night smartphone use is very bad, but if you can’t stop yourself using your phone, at least you can now connect it to a sleep-enhancing gadget.

So comes a brand new wave of devices that encourage users to outsource not only their basic bodily functions but – as with the Apple Watch’s emphasis on providing “motivation” – their very willpower.  These are thrillingly innovative technologies and yet, in the way they encourage us to think about ourselves, they implicitly revive an old and discarded school of ­thinking in psychology. Are we all neo-­behaviourists now?

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The school of behaviourism arose in the early 20th century out of a virtuous scientific caution. Experimenters wished to avoid anthropomorphising animals such as rats and pigeons by attributing to them mental capacities for belief, reasoning, and so forth. This kind of description seemed woolly and impossible to verify.

The behaviourists discovered that the actions of laboratory animals could, in effect, be predicted and guided by careful “conditioning”, involving stimulus and reinforcement. They then applied Ockham’s razor: there was no reason, they argued, to believe in elaborate mental equipment in a small mammal or bird; at bottom, all behaviour was just a response to external stimulus. The idea that a rat had a complex mentality was an unnecessary hypothesis and so could be discarded. The psychologist John B Watson declared in 1913 that behaviour, and behaviour alone, should be the whole subject matter of psychology: to project “psychical” attributes on to animals, he and his followers thought, was not permissible.

The problem with Ockham’s razor, though, is that sometimes it is difficult to know when to stop cutting. And so more radical behaviourists sought to apply the same lesson to human beings. What you and I think of as thinking was, for radical behaviourists such as the Yale psychologist Clark L Hull, just another pattern of conditioned reflexes. A human being was merely a more complex knot of stimulus responses than a pigeon. Once perfected, some scientists believed, behaviourist science would supply a reliable method to “predict and control” the behaviour of human beings, and thus all social problems would be overcome.

It was a kind of optimistic, progressive version of Nineteen Eighty-Four. But it fell sharply from favour after the 1960s, and the subsequent “cognitive revolution” in psychology emphasised the causal role of conscious thinking. What became cognitive behavioural therapy, for instance, owed its impressive clinical success to focusing on a person’s cognition – the thoughts and the beliefs that radical behaviourism treated as mythical. As CBT’s name suggests, however, it mixes cognitive strategies (analyse one’s thoughts in order to break destructive patterns) with behavioural techniques (act a certain way so as to affect one’s feelings). And the deliberate conditioning of behaviour is still a valuable technique outside the therapy room.

The effective “behavioural modification programme” first publicised by Weight Watchers in the 1970s is based on reinforcement and support techniques suggested by the behaviourist school. Recent research suggests that clever conditioning – associating the taking of a medicine with a certain smell – can boost the body’s immune response later when a patient detects the smell, even without a dose of medicine.

Radical behaviourism that denies a subject’s consciousness and agency, however, is now completely dead as a science. Yet it is being smuggled back into the mainstream by the latest life-enhancing gadgets from Silicon Valley. The difference is that, now, we are encouraged to outsource the “prediction and control” of our own behaviour not to a benign team of psychological experts, but to algorithms.

It begins with measurement and analysis of bodily data using wearable instruments such as Fitbit wristbands, the first wave of which came under the rubric of the “quantified self”. (The Victorian polymath and founder of eugenics, Francis Galton, asked: “When shall we have anthropometric laboratories, where a man may, when he pleases, get himself and his children weighed, measured, and rightly photographed, and have their bodily faculties tested by the best methods known to modern science?” He has his answer: one may now wear such laboratories about one’s person.) But simply recording and hoarding data is of limited use. To adapt what Marx said about philosophers: the sensors only interpret the body, in various ways; the point is to change it.

And the new technology offers to help with precisely that, offering such externally applied “motivation” as the Apple Watch. So the reasoning, striving mind is vacated (perhaps with the help of a mindfulness app) and usurped by a cybernetic system to optimise the organism’s functioning. Electronic stimulus produces a physiological response, as in the behaviourist laboratory. The human being herself just needs to get out of the way. The customer of such devices is merely an opaquely functioning machine to be tinkered with. The desired outputs can be invoked by the correct inputs from a technological prosthesis. Our physical behaviour and even our moods are manipulated by algorithmic number-crunching in corporate data farms, and, as a result, we may dream of becoming fitter, happier and more productive.

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The broad current of behaviourism was not homogeneous in its theories, and nor are its modern technological avatars. The physiologist Ivan Pavlov induced dogs to salivate at the sound of a bell, which they had learned to associate with food. Here, stimulus (the bell) produces an involuntary response (salivation). This is called “classical conditioning”, and it is advertised as the scientific mechanism behind a new device called the Pavlok, a wristband that delivers mild electric shocks to the user in order, so it promises, to help break bad habits such as overeating or smoking.

The explicit behaviourist-revival sell here is interesting, though it is arguably predicated on the wrong kind of conditioning. In classical conditioning, the stimulus evokes the response; but the Pavlok’s painful electric shock is a stimulus that comes after a (voluntary) action. This is what the psychologist who became the best-known behaviourist theoretician, B F Skinner, called “operant conditioning”.

By associating certain actions with positive or negative reinforcement, an animal is led to change its behaviour. The user of a Pavlok treats herself, too, just like an animal, helplessly suffering the gadget’s painful negative reinforcement. “Pavlok associates a mild zap with your bad habit,” its marketing material promises, “training your brain to stop liking the habit.” The use of the word “brain” instead of “mind” here is revealing. The Pavlok user is encouraged to bypass her reflective faculties and perform pain-led conditioning directly on her grey matter, in order to get from it the behaviour that she prefers. And so modern behaviourist technologies act as though the cognitive revolution in psychology never happened, encouraging us to believe that thinking just gets in the way.

Technologically assisted attempts to defeat weakness of will or concentration are not new. In 1925 the inventor Hugo Gernsback announced, in the pages of his magazine Science and Invention, an invention called the Isolator. It was a metal, full-face hood, somewhat like a diving helmet, connected by a rubber hose to an oxygen tank. The Isolator, too, was designed to defeat distractions and assist mental focus.

The problem with modern life, Gernsback wrote, was that the ringing of a telephone or a doorbell “is sufficient, in nearly all cases, to stop the flow of thoughts”. Inside the Isolator, however, sounds are muffled, and the small eyeholes prevent you from seeing anything except what is directly in front of you. Gernsback provided a salutary photograph of himself wearing the Isolator while sitting at his desk, looking like one of the Cybermen from Doctor Who. “The author at work in his private study aided by the Isolator,” the caption reads. “Outside noises being eliminated, the worker can concentrate with ease upon the subject at hand.”

Modern anti-distraction tools such as computer software that disables your internet connection, or word processors that imitate an old-fashioned DOS screen, with nothing but green text on a black background, as well as the brain-measuring Muse headband – these are just the latest versions of what seems an age-old desire for technologically imposed calm. But what do we lose if we come to rely on such gadgets, unable to impose calm on ourselves? What do we become when we need machines to motivate us?

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It was B F Skinner who supplied what became the paradigmatic image of ­behaviourist science with his “Skinner Box”, formally known as an “operant conditioning chamber”. Skinner Boxes come in different flavours but a classic example is a box with an electrified floor and two levers. A rat is trapped in the box and must press the correct lever when a certain light comes on. If the rat gets it right, food is delivered. If the rat presses the wrong lever, it receives a painful electric shock through the booby-trapped floor. The rat soon learns to press the right lever all the time. But if the levers’ functions are changed unpredictably by the experimenters, the rat becomes confused, withdrawn and depressed.

Skinner Boxes have been used with success not only on rats but on birds and primates, too. So what, after all, are we doing if we sign up to technologically enhanced self-improvement through gadgets and apps? As we manipulate our screens for ­reassurance and encouragement, or wince at a painful failure to be better today than we were yesterday, we are treating ourselves similarly as objects to be improved through operant conditioning. We are climbing willingly into a virtual Skinner Box.

As Carl Cederström and André Spicer point out in their book The Wellness Syndrome, published last year: “Surrendering to an authoritarian agency, which is not just telling you what to do, but also handing out rewards and punishments to shape your behaviour more effectively, seems like undermining your own agency and autonomy.” What’s worse is that, increasingly, we will have no choice in the matter anyway. Gernsback’s Isolator was explicitly designed to improve the concentration of the “worker”, and so are its digital-age descendants. Corporate employee “wellness” programmes increasingly encourage or even mandate the use of fitness trackers and other behavioural gadgets in order to ensure an ideally efficient and compliant workforce.

There are many political reasons to resist the pitiless transfer of responsibility for well-being on to the individual in this way. And, in such cases, it is important to point out that the new idea is a repackaging of a controversial old idea, because that challenges its proponents to defend it explicitly. The Apple Watch and its cousins promise an utterly novel form of technologically enhanced self-mastery. But it is also merely the latest way in which modernity invites us to perform operant conditioning on ourselves, to cleanse away anxiety and dissatisfaction and become more streamlined citizen-consumers. Perhaps we will decide, after all, that tech-powered behaviourism is good. But we should know what we are arguing about. The rethinking should take place out in the open.

In 1987, three years before he died, B F Skinner published a scholarly paper entitled Whatever Happened to Psychology as the Science of Behaviour?, reiterating his now-unfashionable arguments against psychological talk about states of mind. For him, the “prediction and control” of behaviour was not merely a theoretical preference; it was a necessity for global social justice. “To feed the hungry and clothe the naked are ­remedial acts,” he wrote. “We can easily see what is wrong and what needs to be done. It is much harder to see and do something about the fact that world agriculture must feed and clothe billions of people, most of them yet unborn. It is not enough to advise people how to behave in ways that will make a future possible; they must be given effective reasons for behaving in those ways, and that means effective contingencies of reinforcement now.” In other words, mere arguments won’t equip the world to support an increasing population; strategies of behavioural control must be designed for the good of all.

Arguably, this authoritarian strand of behaviourist thinking is what morphed into the subtly reinforcing “choice architecture” of nudge politics, which seeks gently to compel citizens to do the right thing (eat healthy foods, sign up for pension plans) by altering the ways in which such alternatives are presented.

By contrast, the Apple Watch, the Pavlok and their ilk revive a behaviourism evacuated of all social concern and designed solely to optimise the individual customer. By ­using such devices, we voluntarily offer ourselves up to a denial of our voluntary selves, becoming atomised lab rats, to be manipulated electronically through the corporate cloud. It is perhaps no surprise that when the founder of American behaviourism, John B Watson, left academia in 1920, he went into a field that would come to profit very handsomely indeed from his skills of manipulation – advertising. Today’s neo-behaviourist technologies promise to usher in a world that is one giant Skinner Box in its own right: a world where thinking just gets in the way, and we all mechanically press levers for food pellets.

This article first appeared in the 18 August 2016 issue of the New Statesman, Corbyn’s revenge