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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A nervous breakdown in the body politic

Are we too complacent in thinking that the toxic brew of paranoia and populism that brought Hitler to power will never be repeated?

The conventional wisdom holds that “all that is necessary for the triumph of evil is that good men do nothing”, in Edmund Burke’s familiar phrase; but this is at best a half-truth. Studying the biography of a moral monster triumphantly unleashed on the political and international stage points us to another perspective, no less important. What is necessary for the triumph of evil is that the ground should have been thoroughly prepared by countless small or not-so-small acts of petty malice, unthinking prejudice and collusion. Burke’s axiom, though it represents a powerful challenge to apathy, risks crediting evil with too much of a life of its own: out there, there are evil agencies, hostile to “us”, and we (good men and women) must mobilise to resist.

No doubt; but mobilising intelligently demands being willing to ask what habits and assumptions, as well as what chances and conditions, have made possible the risk of evil triumphing. And that leads us into deep waters, to a recognition of how what we tolerate or ignore or underestimate opens the way for disaster, the ways in which we are at least half-consciously complicit. If this is not to be the silly we-are-all-guilty response that has rightly been so much mocked, nor an absolution for the direct agents of great horrors, it needs a careful and unsparing scrutiny of the processes by which cultures become corruptible, vulnerable to the agendas of damaged and obsessional individuals.

This can be uncomfortable. It raises the awkward issue of what philosophers have learned to call “moral luck” – the fact that some people with immense potential for evil don’t actualise it, because the circumstances don’t present them with the chance, and that some others who might have spent their lives in blameless normality end up supervising transports to Auschwitz. Or, to take a sharply contemporary example, that one Muslim youth from a disturbed or challenging background becomes a suicide bomber but another from exactly the same background doesn’t. It is as though there were a sort of diabolical mirror image for the biblical Parable of the Sower: some seeds grow and some don’t, depending on the ground they fall on, or what chance external stimulus touches them at critical moments.

If what interests us is simply how to assign individuals rapidly and definitively to the categories of sheep and goats, saved and damned, this is offensively frustrating. But if we recognise that evil is in important respects a shared enterprise, we may be prompted to look harder at those patterns of behaviour and interaction that – in the worst cases – give permission to those who are most capable of extreme destructiveness, and to examine our personal, political and social life in the light of this.

***

It would be possible to argue that the anti-Semitism of a lot of German culture – as of European Christian culture overall – was never (at least in the modern period) genocidal and obsessed with absolute racial purity; limited but real possibilities of integration were taken for granted, converts to Christianity were not disadvantaged merely because of their race, and so on. Yet the truth is that this cultural hinterland offered a foothold to the mania of Adolf Hitler; that it gave him just enough of the permission he needed to identify his society’s problems with this clearly definable “alien” presence. In his new book, Hitler: the Ascent, Volker Ullrich compellingly tells us once again that no one could have been under any illusion about Hitler’s general intentions towards the Jews from his very first appearance as a political figure, even if the detailed planning of genocide (lucidly traced in the late David Cesarani’s recent, encyclopaedic Final Solution) took some time to solidify. Yet so much of the German public heard Hitler’s language as the slightly exaggerated version of a familiar trope and felt able to treat it as at worst an embarrassing overstatement of a common, even a common-sense, view. One of the most disturbing things about this story is the failure of so many (inside and outside Germany) to grasp that Hitler meant what he said; and this failure in turn reinforced the delusion of those who thought they could use and then sideline Hitler.

To say that Hitler “meant what he said”, however, can be misleading. It is one of the repeated and focal themes in Ullrich’s book that Hitler was a brazen, almost compulsive liar – or, perhaps better, a compulsive and inventive actor, devising a huge range of dramatic roles for himself: frustrated artist, creative patron, philosopher-king (there is a fine chapter on the intellectual and artistic circle he assembled frequently at his Berchtesgaden residence), workers’ friend, martyr for his people (he constantly insinuated that he believed himself doomed to a tragic and premature death), military or economic messiah and a good deal else besides. His notorious outbursts of hysterical rage seem to have been skilfully orchestrated as instruments of intimidation (though this did not exactly indicate that he was otherwise predictable). Ullrich devotes a fair measure of attention to the literal staging of National Socialism, the architectural gigantism of Albert Speer which gave the Führer the sophisticated theatre he craved. In all sorts of ways, Hitler’s regime was a profoundly theatrical exercise, from the great public displays at Nuremberg and the replanning of Berlin to the various private fantasies enacted by him and his close associates (Göring above all), and from the emotional roller coaster he created for his circle to the dangerously accelerated rate of military-industrial expansion with which he concealed the void at the centre of the German economy.

Theatre both presupposes and creates a public. In the anxiety and despair of post-Versailles Germany, there was a ready audience for the high drama of Nazism, including its scapegoating of demonic enemies within and without. And in turn, the shrill pitch of Hitler’s quasi-liturgies normalised a whole set of bizarre and fantastic constructions of reality. A N Wilson’s challenging novel Winnie and Wolf, a fantasia on Hitler’s relations with Winifred Wagner, culminates in a scene at the end of the war where refugees and destitute citizens in Bayreuth raid the wardrobe of the opera house and wander the streets dressed in moth-eaten costumes; it is an unforgettable metaphor for one of the effects of Hitlerian theatre. Ullrich leaves his readers contemplating the picture of a vast collective drama centred on a personality that was not – as some biographers have suggested – something of a cipher, but that of a fantasist on a grand scale, endowed with a huge literal and metaphorical budget for staging his work.

All of this prompts questions about how it is that apparently sophisticated political systems succumb to corporate nervous breakdowns. It is anything but an academic question in a contemporary world where theatrical politics, tribal scapegoating and variegated confusions about the rule of law are increasingly in evidence. On this last point, it is still shocking to realise how rapidly post-Versailles Germany came to regard violent public conflict between heavily armed militias as almost routine, and this is an important background to the embittered negotiations later on around the relation between Hitler’s Sturmabteilung and the official organs of state coercion. Ullrich’s insightful account of a de facto civil war in Bavaria in the early 1920s makes it mercilessly plain that any pretensions to a state monopoly of coercion in Germany in this period were empty.

Yet the idea of such a state monopoly is in fact essential to anything that could be called a legitimate democracy. In effect, the polity of the Third Reich “privatised” coer­cion: again and again in Ullrich’s book, in the struggles for power before 1933, we see Nazi politicians successfully bidding for control of the mechanisms of public order in the German regions, and more or less franchising public order to their own agencies. A classical democratic political philosophy would argue that the state alone has the right to use force because the state is the guarantor of every community’s and every individual’s access to redress for injury or injustice. If state coercion becomes a tool for any one element in the social complex, it loses legitimacy. It is bound up with the rule of law, which is about something more than mere majority consent. One way of reading the rise of Hitler and National Socialism is as the steady and consistent normalising of illegitimate or partisan force, undermining any concept of an independent guarantee of lawfulness in society. It is the deliberate dissolution of the idea of a Rechtsstaat, a law-governed state order that can be recognised by citizens as organised for their common and individual good. Rule by decree, the common pattern of Nazi governmental practice, worked in harness with law enforcement by a force that was essentially a toxic hybrid, combining what was left of an independent police operation with a highly organised party militia system.

So, one of the general imperatives with which Hitler’s story might leave us is the need to keep a clear sense of what the proper work of the state involves. Arguments about the ideal “size” of the state are often spectacularly indifferent to the basic question of what the irreducible functions of state authority are – and so to the question of what cannot be franchised or delegated to non-state actors (it is extraordinary that we have in the UK apparently accepted without much debate the idea that prison security can be sold off to private interests). This is not the same as saying that privatisation in general leads to fascism; the issues around the limits to state direction of an economy are complex. However, a refusal to ask some fundamental questions about the limits of “franchising” corrodes the idea of real democratic legitimacy – the legitimacy that arises from an assurance to every citizen that, whatever their convictions or their purchasing power, the state is there to secure their access to justice. And, connected with this, there are issues about how we legislate: what are the proper processes of scrutiny for legislation, and how is populist and short-view legislation avoided? The Third Reich offers a masterclass in executive tyranny, and we need not only robust and intelligent counter-models, but a clear political theory to make sense of and defend those models.

***

Theatre has always been an aspect of the political. But there are different kinds of theatre. In ancient Athens, the annual Dionysia festival included the performance of tragedies that forced members of the audience to acknowledge the fragility of the political order and encouraged them to meditate on the divine interventions that set a boundary to vendetta and strife. Classical tragedy is, as political theatre, the exact opposite of Hitlerian drama, which repeatedly asserted the solid power of the Reich, the overcoming of weakness and division by the sheer, innate force of popular will as expressed through the Führer.

Contemporary political theatre is not – outside the more nakedly totalitarian states – a matter of Albert Speer-like spectacle and affirmation of a quasi-divine leader; but it is increasingly the product of a populist-oriented market, the parading of celebrities for popular approval, with limited possibilities for deep public discussion of policies advanced, and an assumption that politicians will be, above all, performers. It is not – to warn once again against cliché and exaggeration – that celebrity culture in politics is a short route to fascism. But a political theatre that never deals with the fragility of the context in which law and civility operate, that never admits the internal flaws and conflicts of a society, and never allows some corporate opening-up to the possibilities of reconciliation and reparation, is one that exploits, rather than resolves our anxieties. And, as such, it makes us politically weaker, more confused and fragmented.

The extraordinary mixture of farce and menace in Donald Trump’s campaign is a potent distillation of all this: a political theatre, divorced from realism, patience and human solidarity, bringing to the surface the buried poisons of a whole system and threatening its entire viability and rationality. But it is an extreme version of the way in which modern technology-and-image-driven communication intensifies the risks that beset the ideals of legitimate democracy.

And – think of Trump once again – one of the most seductively available tricks of such a theatre is the rhetoric of what could be called triumphant victimhood: we are menaced by such and such a group (Jews, mig­rants, Muslims, Freemasons, international business, Zionism, Marxism . . .), which has exerted its vast but covert influence to destroy us; but our native strength has brought us through and, given clear leadership, will soon, once and for all, guarantee our safety from these nightmare aliens.

***

This is a rhetoric that depends on ideas of collective guilt or collective malignity: plots ascribed to the agency of some dangerous minority are brandished in order to tarnish the name of entire communities. The dark legacy of much popular Christian language about collective Jewish guilt for the death of Jesus could be translated without much difficulty into talk about the responsibility of Jews for the violence and poverty afflicting Germans in the 1920s. (Shadows of the same myths still affect the way in which – as recent reports suggest – sinister, vague talk about Zionism and assumptions of a collective Jewish guilt for the actions of various Israeli politicians can become part of a climate that condones anti-Semitic bullying, or text messages saying “Hitler had a point”, on university campuses.)

Granted that there is no shortage of other candidates for demonic otherness in Europe and the United States (witness Trump’s language about Muslims and Mexicans), the specific and abiding lesson of Nazi anti-Semitism is the twofold recognition of the ease with which actually disadvantaged communities can be cast in the role of all-powerful subverters, and the way in which the path to violent exclusion of one kind or another can be prepared by cultures of casual bigotry and collective anxiety or self-pity, dramatised by high-temperature styles of media communication.

Marie Luise Knott’s recent short book Unlearning With Hannah Arendt (2014) revisits the controversy over Arendt’s notorious characterisation of the mindset of Nazism as “the banality of evil”, and brilliantly shows how her point is to do with the erosion in Hitlerian Germany of the capacity to think, to understand one’s agency as answerable to more than public pressure and fashion, to hold to notions of honour and dignity independent of status, convention or influence – but also, ultimately, the erosion of a sense of the ridiculous. The victory of public cliché and stereotype is, in Arendt’s terms, a protection against reality, “against the claim on our thinking attention that all events and facts make by virtue of their existence”, as she memorably wrote in The Life of the Mind. Hitler was committed to the destruction of anything that challenged the simple self-identity and self-justification of the race and the nation; hence, as Ullrich shows in an acutely argued chapter of Hitler: a Biography, the Führer’s venom against the churches, despite their (generally) embarrassingly lukewarm resistance to the horrors of the Reich. The problem was that the churches’ rationale entailed just that accountability to more than power and political self-identity that Nazi philosophy treated as absolute. They had grounds for thinking Nazism not only evil, but absurd. Perhaps, then, one of the more unexpected questions we are left with by a study of political nightmare such as Ullrich’s excellent book is how we find the resources for identifying the absurd as well as for clarifying the grounds of law and honour.

The threats now faced by “developed” democracy are not those of the 1920s and 1930s; whatever rough beasts are on their way are unlikely to have the exact features of Hitler’s distinctive blend of criminality and melodrama. But this does not mean that we shouldn’t be looking as hard as we can at the lessons to be learned from the collapse of political legality, the collective panics and myths, the acceptance of delusional and violent public theatre that characterised Hitler’s Germany. For evil to triumph, what is necessary is for societies to stop thinking, to stop developing an eye for the absurd as well as the corrupt in language and action, public or private.

Hitler: a Biography – Volume I: Ascent by Volker Ullrich is published by the Bodley Head

Rowan Williams is an Anglican prelate, theologian and poet, who was Archbishop of Canterbury from 2002 to 2012. He writes on books for the New Statesman

This article first appeared in the 28 April 2016 issue of the New Statesman, The new fascism