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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The age of loneliness

Profound changes in technology, work and community are transforming our ultrasocial species into a population of loners.

Our dominant ideology is based on a lie. A series of lies, in fact, but I’ll focus on just one. This is the claim that we are, above all else, self-interested – that we seek to enhance our own wealth and power with little regard for the impact on others.

Some economists use a term to describe this presumed state of being – Homo economicus, or self-maximising man. The concept was formulated, by J S Mill and others, as a thought experiment. Soon it became a modelling tool. Then it became an ideal. Then it evolved into a description of who we really are.

It could not be further from the truth. To study human behaviour is to become aware of how weird we are. Many species will go to great lengths to help and protect their close kin. One or two will show occasional altruism towards unrelated members of their kind. But no species possesses a capacity for general altruism that is anywhere close to our own.

With the possible exception of naked mole-rats, we have the most social minds of all mammals. These minds evolved as an essential means of survival. Slow, weak, armed with rounded teeth and flimsy nails in a world of fangs and claws and horns and tusks, we survived through co-operation, reciprocity and mutual defence, all of which developed to a remarkable degree.

A review paper in the journal Frontiers in Psychology observes that Homo economicus  might be a reasonable description of chimpanzees. “Outsiders . . . would not expect to receive offers of food or solicitude; rather, they would be fiercely attacked . . . food is shared only under harassment; even mothers will not voluntarily offer novel foods to their own infants unless the infants beg for them.” But it is an unreasonable description of human beings.

How many of your friends, colleagues and neighbours behave like chimpanzees? A few, perhaps. If so, are they respected or reviled? Some people do appear to act as if they have no interests but their own – Philip Green and Mike Ashley strike me as possible examples – but their behaviour ­attracts general revulsion. The news is filled with spectacular instances of human viciousness: although psychopaths are rare, their deeds fill the papers. Daily acts of kindness are seldom reported, because they are everywhere.

Every day, I see people helping others with luggage, offering to cede their place in a queue, giving money to the homeless, setting aside time for others, volunteering for causes that offer no material reward. Alongside these quotidian instances are extreme and stunning cases. I think of my Dutch mother-in-law, whose family took in a six-year-old Jewish boy – a stranger – and hid him in their house for two years during the German occupation of the Netherlands. Had he been discovered, they would all have been sent to a concentration camp.

Studies suggest that altruistic tendencies are innate: from the age of 14 months, children try to help each other, attempting to hand over objects another child can’t reach. At the age of two, they start to share valued possessions. By the time they are three, they begin to protest against other people’s violation of moral norms.

Perhaps because we are told by the media, think tanks and politicians that competition and self-interest are the defining norms of human life, we disastrously mischaracterise the way in which other people behave. A survey commissioned by the Common Cause Foundation reported that 78 per cent of respondents believe others to be more selfish than they really are.

I do not wish to suggest that this mythology of selfishness is the sole or even principal cause of the epidemic of loneliness now sweeping the world. But it is likely to contribute to the plague by breeding suspicion and a sense of threat. It also appears to provide a doctrine of justification for those afflicted by isolation, a doctrine that sees individualism as a higher state of existence than community. Perhaps it is hardly surprising that Britain, the European nation in which neoliberalism is most advanced, is, according to government figures, the loneliness capital of Europe.

There are several possible reasons for the atomisation now suffered by the supremely social mammal. Work, which used to bring us together, now disperses us: many people have neither fixed workplaces nor regular colleagues and regular hours. Our leisure time has undergone a similar transformation: cinema replaced by television, sport by computer games, time with friends by time on Facebook.

Social media seems to cut both ways: it brings us together and sets us apart. It helps us to stay in touch, but also cultivates a tendency that surely enhances other people’s sense of isolation: a determination to persuade your followers that you’re having a great time. FOMO – fear of missing out – seems, at least in my mind, to be closely ­associated with loneliness.

Children’s lives in particular have been transformed: since the 1970s, their unaccompanied home range (in other words, the area they roam without adult supervision) has declined in Britain by almost 90 per cent. Not only does this remove them from contact with the natural world, but it limits their contact with other children. When kids played out on the street or in the woods, they quickly formed their own tribes, learning the social skills that would see them through life.

An ageing population, family and community breakdown, the decline of institutions such as churches and trade unions, the switch from public transport to private, inequality, an alienating ethic of consumerism, the loss of common purpose: all these are likely to contribute to one of the most dangerous epidemics of our time.

Yes, I do mean dangerous. The stress response triggered by loneliness raises blood pressure and impairs the immune system. Loneliness enhances the risk of depression, paranoia, addiction, cognitive decline, dem­entia, heart disease, stroke, viral infection, accidents and suicide. It is as potent a cause of early death as smoking 15 cigarettes a day, and can be twice as deadly as obesity.

Perhaps because we are in thrall to the ideology that helps to cause the problem, we turn to the market to try to solve it. Over the past few weeks, the discovery of a new American profession, the people-walker (taking human beings for walks), has caused a small sensation in the media. In Japan there is a fully fledged market for friendship: you can hire friends by the hour with whom to chat and eat and watch TV; or, more disturbingly, to pose for pictures that you can post on social media. They are rented as mourners at funerals and guests at weddings. A recent article describes how a fake friend was used to replace a sister with whom the bride had fallen out. What would the bride’s mother make of it? No problem: she had been rented, too. In September we learned that similar customs have been followed in Britain for some time: an early foray into business for the Home Secretary, Amber Rudd, involved offering to lease her posh friends to underpopulated weddings.



My own experience fits the current pattern: the high incidence of loneliness suffered by people between the ages of 18 and 34. I have sometimes been lonely before and after that period, but it was during those years that I was most afflicted. The worst episode struck when I returned to Britain after six years working in West Papua, Brazil and East Africa. In those parts I sometimes felt like a ghost, drifting through societies to which I did not belong. I was often socially isolated, but I seldom felt lonely, perhaps because the issues I was investigating were so absorbing and the work so frightening that I was swept along by adrenalin and a sense of purpose.

When I came home, however, I fell into a mineshaft. My university friends, with their proper jobs, expensive mortgages and settled, prematurely aged lives, had become incomprehensible to me, and the life I had been leading seemed incomprehensible to everyone. Though feeling like a ghost abroad was in some ways liberating – a psychic decluttering that permitted an intense process of discovery – feeling like a ghost at home was terrifying. I existed, people acknowledged me, greeted me cordially, but I just could not connect. Wherever I went, I heard my own voice bouncing back at me.

Eventually I made new friends. But I still feel scarred by that time, and fearful that such desolation may recur, particularly in old age. These days, my loneliest moments come immediately after I’ve given a talk, when I’m surrounded by people congratulating me or asking questions. I often experience a falling sensation: their voices seem to recede above my head. I think it arises from the nature of the contact: because I can’t speak to anyone for more than a few seconds, it feels like social media brought to life.

The word “sullen” evolved from the Old French solain, which means “lonely”. Loneliness is associated with an enhanced perception of social threat, so one of its paradoxical consequences is a tendency to shut yourself off from strangers. When I was lonely, I felt like lashing out at the society from which I perceived myself excluded, as if the problem lay with other people. To read any comment thread is, I feel, to witness this tendency: you find people who are plainly making efforts to connect, but who do so by insulting and abusing, alienating the rest of the thread with their evident misanthropy. Perhaps some people really are rugged individualists. But others – especially online – appear to use that persona as a rationale for involuntary isolation.

Whatever the reasons might be, it is as if a spell had been cast on us, transforming this ultrasocial species into a population of loners. Like a parasite enhancing the conditions for its own survival, loneliness impedes its own cure by breeding shame and shyness. The work of groups such as Age UK, Mind, Positive Ageing and the Campaign to End Loneliness is life-saving.

When I first wrote about this subject, and the article went viral, several publishers urged me to write a book on the theme. Three years sitting at my desk, studying isolation: what’s the second prize? But I found another way of working on the issue, a way that engages me with others, rather than removing me. With the brilliant musician Ewan McLennan, I have written a concept album (I wrote the first draft of the lyrics; he refined them and wrote the music). Our aim is to use it to help break the spell, with performances of both music and the spoken word designed to bring people together –which, we hope, will end with a party at the nearest pub.

By itself, our work can make only a tiny contribution to addressing the epidemic. But I hope that, both by helping people to acknowledge it and by using the power of music to create common sentiment, we can at least begin to identify the barriers that separate us from others, and to remember that we are not the selfish, ruthless beings we are told we are.

“Breaking the Spell of Loneliness” by Ewan McLennan and George Monbiot is out now. For a full list of forthcoming gigs visit: monbiot.com/music/

This article first appeared in the 20 October 2016 issue of the New Statesman, Brothers in blood