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.
André Carrilho
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"Jeremy knows he can't do the job." What now for Labour and Britain's opposition?

Senior figures from all parties discuss the way forward: a new Labour leader, a new party or something else?

In the week beginning 13 March 2017, the Scottish National Party demanded a second referendum on indepen­dence, the Chancellor tore up his Budget and George Osborne was announced as the next editor of the London Evening Standard. One fact united these seemingly disparate events: the weakness of Her Majesty’s Opposition.

When Scotland’s First Minister, Nicola Sturgeon, addressed journalists at Bute House, her Edinburgh residence, she observed that Labour’s collapse entailed an extended period of Conservative rule. Such was the apparent truth of this statement that it went unchallenged.

Twenty minutes before Prime Minister’s Questions on 15 March, the Conservatives announced the abandonment of their planned rise in National Insurance for the self-employed. Their expectation that Jeremy Corbyn would be unable to profit was fulfilled. “Faced with an open goal, Jeremy picked up a tennis racket,” one Labour MP lamented of his leader’s performance. Rather than a threat, the government regards PMQs as an opportunity.

Two days later, Osborne was announced as the next editor of the Standard. “Frankly @George_Osborne will provide more effective opposition to the government than the current Labour Party,” the paper’s co-proprietor Evgeny Lebedev tweeted. His decision to hand the post to a Conservative MP was another mark of Labour’s marginalisation. In more politically competitive times, owners are warier of overt partisanship.

The Tories have a parliamentary majority of just 15 – the smallest of any single-party government since 1974 – but they enjoy a dominance out of all proportion to this figure. Nick Clegg, the Liberal Democrat former deputy prime minister, told me: “The fundamental pendulum swing of democracy, namely that the people in power are always worried that the other lot are going to hoof them out, has stopped.”

Labour is hardly a stranger to opposition: the party governed for just 20 years of the 20th century. But never in postwar history has it appeared so feeble. By-elections are usually relished by oppositions and feared by governments. But in Copeland in the north-west of England, a seat that had not returned a Conservative since 1931, the Tories triumphed over Labour. In recent polling the governing party has led by as much as 19 points and on one occasion it was leading in every age group, every social class and every region.

Corbyn’s MPs fear that were he to lead Labour into a general election, the attack dossier assembled by the Conservatives would push support as low as 20 per cent.

When David Miliband recently said that Labour was “further from power than at any stage in my lifetime”, he was being far too generous. After the forthcoming boundary changes, it could be left with as few as 150 seats: its worst performance since 1935.

The party’s plight was both predictable and predicted – the inevitable consequence of electing a leader who, by his own admission, lacked the requisite skills. “Now we made to make sure I don’t win,” Corbyn told supporters after he made the ballot in 2015. The lifelong backbencher stood with the intention of leading debate, not leading the party.

Neil Kinnock, Labour’s leader from 1983 to 1992, told me: “From the outset, I said that Jeremy [Corbyn] just can’t do the job . . . Now I think he knows that. He’s been a member of parliament for 34 years and will have a sense of self-examination. Both he and the people who work around him know that he just can’t do the job.”

Morale in the leader’s office has seldom been lower. “They’ve got the yips,” a Lab­our aide told me. Shortly after the Tories’ Budget U-turn, Corbyn’s director of strategy and communications, Seumas Milne, asked journalists whether there would be an early general election. He produced no evidence of any hope that Labour could win it.

Yet Corbyn’s leadership alone does not explain the crisis. In the early 1980s, when Labour was similarly enfeebled (but still strong in Scotland, unlike today), the creation of the Social Democratic Party provided hope. But the mere 23 seats won by the SDP-Liberal Alliance in 1983 (on 25.4 per cent of the vote, against Labour’s 209 seats from 27.6 per cent) acts as a permanent warning to those tempted to split.

With only nine MPs, the Liberal Democrats are too weak to function as an alternative opposition, despite their accelerating recovery. The third-largest party in the House of Commons – the SNP – is an exclusively Scottish force. The hegemony of the Nats, which cost Labour 40 seats in Scotland in 2015, has encouraged forecasts of perpetual Tory rule. “I don’t think there’s any way the Labour Party in this day and age can beat the Conservatives south of the border,” Clegg said.

To many eyes, the UK is being transformed into two one-party states: an SNP-led Scotland and a Conservative-led England. “The right-wing press have coalesced around Brexit and have transformed themselves from competitors into, in effect, a political cabal, which has such a paralysing effect on the political debate,” Clegg said. “You have a consistent and homogeneous drumbeat from the Telegraph, the Express, the Mail, the Sun, and so on.”

In this new era, the greatest influence on the government is being exercised from within the Conservative Party. “Where’s the aggravation? Where’s the heat coming from? Eighty hardline Brexiteers,” Anna Soubry, the pro-European former Conservative minister, told me. “They’re a party within a party and they are calling the shots. So where else is [May’s] heat? Fifteen Conservatives – people like me and the rest of them now. So who’s winning out there?”

Soubry added: “The right wing of the party flex their muscle against the only lead Remainer in the cabinet, Philip Hammond, for no other reason than to see him off. And that’s what they’ll do. They’ll pick them off one by one. These people are ruthless, this is their life’s work, and nobody and nothing is going to get in their way.”

Theresa May’s decision to pursue a “hard Brexit” – withdrawal from the EU single market and the customs union – is partly a policy choice; there is probably no other means by which the UK can secure significant control over European immigration. But the Prime Minister’s course is also a political choice. She recognised that the Conservatives’ formidable pro-Leave faction, whose trust she had to earn, as a Remainer, would accept nothing less.

***

The UK is entering the most complex negotiations it has undertaken since the end of the Second World War with the weakest opposition in living memory. Though some Tories relish an era of prolonged one-party rule, others are troubled by the democratic implications. Neil Carmichael MP, the chair of the Conservative Group for Europe, cited Disraeli’s warning: “No government can be long secure without a formidable opposition.” It was in Margaret Thatcher’s and Tony Blair’s pomp that calamitous decisions such as the poll tax and the invasion of Iraq were made. Governments that do not fear defeat frequently become their own worst enemy and, in turn, the public’s. The UK, with its unwritten constitution, its unelected upper chamber and its majoritarian voting system, is permanently vulnerable to elective dictatorships.

As they gasp at Labour’s self-destruction, politicians are assailed by Lenin’s question: “What is to be done?” Despite the baleful precedent of the SDP, some advocate a new split. In favour of following this path, they cite an increasingly promiscuous electorate, a pool of willing donors and “the 48 per cent” who voted Remain. Emmanuel Macron – the favourite to be elected president of France in May, who founded his own political movement, En Marche! – is another inspiration.

A week after the EU referendum, the Liberal Democrat leader, Tim Farron, was taken by surprise when a close ally of George Osborne approached him and suggested the creation of a new centrist party called “the Democrats” (the then chancellor had already pitched the idea to Labour MPs). “I’m all ears and I’m very positive about working with people in other parties,” Farron told me. But he said that the “most effective thing” he could do was to rebuild the Liberal Democrats.

When we spoke, Nick Clegg emphasised that “you’ve got to start with the ideas” but, strikingly, he did not dismiss the possibility of a new party. “You can have all sorts of endless, as I say, political parlour game discussions about whether you have different constellations or otherwise.”

Anna Soubry was still more positive about a new party, arguing: “If it could somehow be the voice of a moderate, sensible, forward-thinking, visionary middle way, with open minds – actually things which I’ve believed in all my life – better get on with it.”

However, Labour MPs have no desire to accept that the left’s supremacy is irreversible. But neither do they wish to challenge Corbyn. An MP distilled the new approach: “There is a strategy to give Jeremy [Corbyn] enough rope to hang himself. So it has not been about popping up in the media and criticising him in the way that colleagues did a year or so ago.” By giving him the space to fail on his own terms, rather than triggering another leadership contest, MPs hope that members will ultimately accept a change of direction.

Corbyn’s opponents acknowledge the risks of this approach.

“People are incredibly mindful of the fact that our brand is toxifying,” one told me. “As each day goes by, our plight worsens. Our position in the polls gets worse and the road back gets longer.”

Shadow cabinet ministers believe that Corbyn’s allies will never permit his departure until there is a viable successor. An increasingly influential figure is Karie Murphy, the director of the leader’s office and a close friend of Unite’s general secretary, Len McCluskey. “She’s holding Jeremy in place,” I was told.

Leadership candidates require nominations from 15 per cent of Labour MPs and MEPs, a threshold that the left aims to reduce to just 5 per cent through the “McDonnell amendment” (named after the shadow chancellor, who failed to make ballot when he stood in 2007 and 2010).

Should the rule change pass at this year’s party conference – an unlikely result – the next leadership contest could feature as many as 19 candidates. Labour has no shortage of aspirant leaders: Yvette Cooper, Dan Jarvis, Clive Lewis, Lisa Nandy, Keir Starmer, Emily Thornberry, Chuka Umunna. (Rebecca Long-Bailey, the shadow business secretary and Corbynite choice, is said to believe she is “not ready” for the job.)

All are clear-sighted enough to recognise that Labour’s problems would not end with Corbyn’s departure (nor did they begin with his election as leader). The party must restore its economic credibility, recover in Scotland, or perform far better in England, and bridge the divide between liberal Remainers and conservative Leavers.

Lisa Nandy, one of those who has thought most deeply about Labour’s predicament, told me: “I do think that, for many people, not being able to have time with their families and feel secure about where the next wage packet is coming from, and hope that life is going to get better for their kids, is really pressing as a political priority now. They will vote for the political party that offers real solutions to those things.

“That’s why power is such an important unifying agenda for the Labour Party – not just through redistribution of wealth, which I think we all agree about, but actually the redistribution of power as well: giving people the tools that they need to exert control over the things that matter in their own lives,” she says.

But some Labour MPs suggest even more drastic remedial action is required. “In order to convince the public that you’ve moved on, you have to have a Clause Four-type moment,” one member told me. “Which would probably involve kicking John McDonnell out of the Labour Party or something like that.

“You have a purge. Ken Livingstone gone, maybe even Jeremy [Corbyn] gone. That’s the only way that you can persuade the public that you’re not like that.”

Political commentators often mistake cyclical developments for structural changes. After Labour’s 1992 election defeat it was sometimes said that the party would never govern again. It went on to win three successive terms for the first time in its history. In March 2005 Geoffrey Wheatcroft published his book The Strange Death of Tory England. Less than nine months later, the Conservatives elected David Cameron as leader and returned to winning ways. As the US political journalist Sean Trende has archly observed, if even the Democrats recovered “rather quickly from losing the Civil War” few defeats are unsurvivable.

From despair may spring opportunity. “It is amazing how this Brexit-Trump phase has really mobilised interest in politics,” Nick Clegg said. “It’s galvanised a lot of people . . . That will lead somewhere. If in a democracy there is a lot of energy about, it will find an outlet.”

Editor’s Note, 30 March 2017: Len McCluskey of Unite wishes to point out that Karie Murphy is his close friend not his partner as the piece originally said. The text has been amended accordingly.

George Eaton is political editor of the New Statesman.

This article first appeared in the 30 March 2017 issue of the New Statesman, Wanted: an opposition