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.
Getty
Show Hide image

The French millennials marching behind Marine Le Pen

A Front National rally attracts former socialists with manicured beards, and a lesbian couple. 

“In 85 days, Marine will be President of the French Republic!” The 150-strong crowd cheered at the sound of the words. On stage, the speaker, the vice-president of the far-right Front National (FN), Florian Philippot, continued: “We will be told that it’s the apocalypse, by the same banks, media, politicians, who were telling the British that Brexit would be an immediate catastrophe.

"Well, they voted, and it’s not! The British are much better off than we are!” The applause grew louder and louder. 

I was in the medieval city of Metz, in a municipal hall near the banks of the Moselle River, a tributary of the Rhine from which the region takes its name. The German border lies 49km east; Luxembourg City is less than an hour’s drive away. This is the "Country of the Three Borders", equidistant from Strasbourg and Frankfurt, and French, German and French again after various wars. Yet for all that local history is deeply rooted in the wider European history, votes for the Front National rank among the highest nationally, and continue to rise at every poll. 

In rural Moselle, “Marine”, as the Front National leader Marine Le Pen is known, has an envoy. In 2014, the well-spoken, elite-educated Philippot, 35, ran for mayor in Forbach, a former miner’s town near the border. He lost to the Socialist candidate but has visited regularly since. Enough for the locals to call him “Florian".

I grew up in a small town, Saint-Avold, halfway between Metz and Forbach. When my grandfather was working in the then-prosperous coal mines, the Moselle region attracted many foreign workers. Many of my fellow schoolmates bore Italian and Polish surnames. But the last mine closed in 2004, and now, some of the immigrants’ grandchildren are voting for the National Front.

Returning, I can't help but wonder: How did my generation, born with the Maastricht treaty, end up turning to the Eurosceptic, hard right FN?

“We’ve seen what the other political parties do – it’s always the same. We must try something else," said Candice Bertrand, 23, She might not be part of the group asking Philippot for selfies, but she had voted FN at every election, and her family agreed. “My mum was a Communist, then voted for [Nicolas] Sarkozy, and now she votes FN. She’s come a long way.”  The way, it seemed, was political distrust.

Minutes earlier, Philippot had pleaded with the audience to talk to their relatives and neighbours. Bertrand had brought her girlfriend, Lola, whom she was trying to convince to vote FN.  Lola wouldn’t give her surname – her strongly left-wing family would “certainly not” like to know she was there. She herself had never voted.

This infuriated Bertrand. “Women have fought for the right to vote!” she declared. Daily chats with Bertrand and her family had warmed up Lola to voting Le Pen in the first round, although not yet in the second. “I’m scared of a major change,” she confided, looking lost. “It’s a bit too extreme.” Both were too young to remember 2002, when a presidential victory for the then-Front National leader Jean-Marie Le Pen, was only a few percentage points away.

Since then, under the leadership of his daughter, Marine, the FN has broken every record. But in this region, the FN’s success isn’t new. In 2002, when liberal France was shocked to see Le Pen reach the second round of the presidential election, the FN was already sailing in Moselle. Le Pen grabbed 23.7 per cent of the Moselle vote in the first round and 21.9 per cent in the second, compared to 16.9 per cent and 17.8 per cent nationally. 

The far-right vote in Moselle remained higher than the national average before skyrocketing in 2012. By then, the younger, softer-looking Marine had taken over the party. In that year, the FN won an astonishing 24.7 per cent of the Moselle vote, and 17.8 per cent nationwide.

For some people of my generation, the FN has already provided opportunities. With his manicured beard and chic suit, Emilien Noé still looks like the Young Socialist he was between 16 and 18 years old. But looks can be deceiving. “I have been disgusted by the internal politics at the Socialist Party, the lack of respect for the low-ranked campaigners," he told me. So instead, he stood as the FN’s youngest national candidate to become mayor in his village, Gosselming, in 2014. “I entered directly into action," he said. (He lost). Now, at just 21, Noé is the FN’s youth coordinator for Eastern France.

Metz, Creative Commons licence credit Morgaine

Next to him stood Kevin Pfeiffer, 27. He told me he used to believe in the Socialist ideal, too - in 2007, as a 17-year-old, he backed Ségolène Royal against Sarkozy. But he is now a FN local councillor and acts as the party's general co-ordinator in the region. Both Noé and Pfeiffer radiated a quiet self-confidence, the sort that such swift rises induces. They shared a deep respect for the young-achiever-in-chief: Philippot. “We’re young and we know we can have perspectives in this party without being a graduate of l’ENA,” said another activist, Olivier Musci, 24. (The elite school Ecole Nationale d’Administration, or ENA, is considered something of a mandatory finishing school for politicians. It counts Francois Hollande and Jacques Chirac among its alumni. Ironically, Philippot is one, too.)

“Florian” likes to say that the FN scores the highest among the young. “Today’s youth have not grown up in a left-right divide”, he told me when I asked why. “The big topics, for them, were Maastricht, 9/11, the Chinese competition, and now Brexit. They have grown up in a political world structured around two poles: globalism versus patriotism.” Notably, half his speech was dedicated to ridiculing the FN's most probably rival, the maverick centrist Emmanuel Macron. “It is a time of the nations. Macron is the opposite of that," Philippot declared. 

At the rally, the blue, red and white flame, the FN’s historic logo, was nowhere to be seen. Even the words “Front National” had deserted the posters, which were instead plastered with “in the name of the people” slogans beneath Marine’s name and large smile. But everyone wears a blue rose at the buttonhole. “It’s the synthesis between the left’s rose and the right’s blue colour”, Pfeiffer said. “The symbol of the impossible becoming possible.” So, neither left nor right? I ask, echoing Macron’s campaign appeal. “Or both left and right”, Pfeiffer answered with a grin.

This nationwide rebranding follows years of efforts to polish the party’s jackass image, forged by decades of xenophobic, racist and anti-Semitic declarations by Le Pen Sr. His daughter evicted him from the party in 2015.

Still, Le Pen’s main pledges revolve around the same issue her father obsessed over - immigration. The resources spent on "dealing with migrants" will, Le Pen promises, be redirected to address the concerns of "the French people". Unemployment, which has been hovering at 10 per cent for years, is very much one of them. Moselle's damaged job market is a booster for the FN - between 10 and 12 per cent of young people are unemployed.

Yet the two phenomena cannot always rationally be linked. The female FN supporters I met candidly admitted they drove from France to Luxembourg every day for work and, like many locals, often went shopping in Germany. Yet they hoped to see the candidate of “Frexit” enter the Elysee palace in May. “We've never had problems to work in Luxembourg. Why would that change?” asked Bertrand. (Le Pen's “144 campaign pledges” promise frontier workers “special measures” to cross the border once out of the Schengen area, which sounds very much like the concept of the Schengen area itself.)

Grégoire Laloux, 21, studied history at the University of Metz. He didn't believe in the European Union. “Countries have their own interests. There are people, but no European people,” he said. “Marine is different because she defends patriotism, sovereignty, French greatness and French history.” He compared Le Pen to Richelieu, the cardinal who made Louis XIV's absolute monarchy possible:  “She, too, wants to build a modern state.”

French populists are quick to link the country's current problems to immigration, and these FN supporters were no exception. “With 7m poor and unemployed, we can't accept all the world's misery,” Olivier Musci, 24, a grandchild of Polish and Italian immigrants, told me. “Those we welcome must serve the country and be proud to be here.”

Lola echoed this call for more assimilation. “At our shopping centre, everyone speaks Arabic now," she said. "People have spat on us, thrown pebbles at us because we're lesbians. But I'm in my country and I have the right to do what I want.” When I asked if the people who attacked them were migrants, she was not so sure. “Let's say, they weren't white.”

Trump promised to “Make America Great Again”. To where would Le Pen's France return? Would it be sovereign again? White again? French again? Ruled by absolutism again? She has blurred enough lines to seduce voters her father never could – the young, the gay, the left-wingers. At the end of his speech, under the rebranded banners, Philippot invited the audience to sing La Marseillaise with him. And in one voice they did: “To arms citizens! Form your battalions! March, march, let impure blood, water our furrows...” The song is the same as the one I knew growing up. But it seemed to me, this time, a more sinister tune.