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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Starting Star Wars: How George Lucas came to create a galaxy

On the 40th anniversary of the release of the original Star Wars, George Lucas biographer James Cooray Smith shares the unlikely story of how the first film got made.

While making THX 1138 in 1970, writer/director George Lucas told composer Lalo Schifrin that he wanted to make a Flash Gordon picture, an updating of the 40s sci-fi serials that he’d enjoyed as a child. It would, however, be those serials not as they were, but how he remembered them as having been. When the rights to these proved unavailable, he began to work on original idea, hoping to create something similar, but which he would own himself.

In January 1973, after completing his 50s nostalgia picture American Graffiti but before its release, Lucas began his outline for this space adventure. The first line of this near-incomprehensible document was The Story of Mace Windu. Mace Windu, a revered Jedi-Bendu of Opuchi who was related to Usby CJ Thape, Padewaan learner to the famed Jedi.’

"Jedi" was a word Lucas had coined to describe a clan of warrior mystics who were essential to his story. A man whose fascination for Japanese cinema had become a general interest in Japanese cultural history, he’d named them after the branch of Japanese drama that drew moral and instructive lessons from stories set in the past – Jidai geki.

This version is set in the thirty-third century and features a teenage Princess, droids, an Evil Empire and a grizzled Jedi warrior, General Skywalker, whose plot role resembles Luke’s from the finished film, although his character is Obi-Wan Kenobi’s. It climaxes with a space dogfight and ends with a medal ceremony. Among the planets named are Alderaan (here the Imperial capital) and Yavin, at this point the Wookiee homeworld. Some characters from this draft (Valorum, Mace Windu) would eventually find a home in The Phantom Menace more than twenty years later.

By May Lucas had a 132 page script, The Adventure of Anikin Starkiller. Skywalker had acquired the forename Luke but was no longer the protagonist. This was Anikin (sic) Starkiller, one of the sons of General Skywalker’s old comrade, the partially mechanical renegade Kane Starkiller. Anikin had to protect a Princess, aided by two robots R2-D2 and C-3PO.

Lucas had worked backwards from Flash Gordon, looking to uncover the source of his appeal, hoping to transfer it to his own story. Once he’d worked his way through the comic strips of Gordon’s creator Alex Raymond, he tackled Edgar Rice Burroughs, Jules Verne and Edwin Arnold’s Gulliver on Mars. Conversations with his New Hollywood peers about the archetypes thrown up by his reading – and which he increasingly saw everywhere – brought him into contact with Joseph Campbell’s then newly published Myths to Live By (1972) an anthology of lectures and essays from a man who devoted his career to identifying the basic archetypal characters and situations which he felt underpinned all human mythologies.

"The book began to focus what I had already been doing intuitively" Lucas later said, an idea which seemed to him to itself reinforce Campbell’s contention that such archetypes and situations dwelled in a collective unconsciousness. Lucas expanded his reading to epics of all kinds, and began planning a visual style that would combine the vistas of Japanese master director Akira Kurosawa with the kind of static-camera realism which he’d used on American Graffiti.

Lucas wanted over-exposed colours and lots of shadows, but shot in a way that made them seem unremarkable. Seeing the Apollo missions return from the moon "littered with weightless candy bar wrappers and old Tang jars, no more exotic than the family station wagon" had illustrated to him the problem with every fantasy movie ever made. Their worlds never looked like people lived in them. His film would depict a "used future". Describing the aesthetic he’d sought to American Cinematographer he explained: "I wanted the seeming contradiction of…fantasy combined with the feel of a documentary."  To Lucas Star Wars wasn’t science fiction, it was "documentary fantasy".

There was only one studio executive Lucas thought had any hope of understanding what he was trying to do, Fox’s Alan Ladd Jr, son of the late actor. Like Lucas and his contemporaries in New Hollywood, Ladd was a man driven by a love of cinema. Lucas could communicate with him through a shared vocabulary, describe a planned scene as being like something from The Searchers (John Ford, 1956) or Fahrenheit 451 (Francois Truffaut, 1966) and be understood. Ten days after his presentation to Ladd, they signed a development deal. Fox agreed to pay Lucas $15,000 to develop a script, plus $50,000 to write the movie and another $100,000 to direct it, should it actually be made. American Graffiti associate producer Gary Kurtz was named as Producer for Star Wars, and received $50,000.

The script development money gave Lucas enough to live on whilst he continued work on the screenplay. As he did so it changed again; a ‘Kiber Crystal’ was written in and then written out. Skywalker became Deak Starkiller’s overweight younger brother before becoming the farm boy familiar from the finished film. Characters swapped names and roles. A new character named Darth Vader – sometimes a rogue Jedi, sometimes a member of the rival ‘Knights of Sith’ – had his role expanded. Some drafts killed him during the explosion of the Death Star, others allowed him to survive; across subsequent drafts his role grew. Some previously major characters disappeared altogether, pushed into a "backstory", Lucas choosing to develop the practically realisable aspects of his story.

This is an important clarification to the idea that Star Wars was "always" a part of a larger saga, one later incarnated in its sequels and prequels. That’s true, but not in an absolutely literal way. Star Wars itself isn’t an excerpted chunk of a vast plotline, the rest of which was then made over the next few decades. It’s a distillation of as much of a vast, abstract, unfinished epic as could be pitched as a fairly cheap film to be shot using the technology of the mid 1970s. And even then much of the equipment used to make the film would be literally invented by Lucas and his crew during production.

In August 1973 Graffiti was released and became a box office sensation, not only did the profits make Lucas rich (he became, at 29, a millionaire literally overnight) its success meant that Lucas was able to renegotiate the terms of his Fox deal. Rather than making demands in the traditional arenas of salary and percentages Lucas wanted control of the music, sequel and merchandising rights to his creations. Fox conceded him 60 per cent of the merchandising, aware of its potential value to them, but eventually agreed that Lucas’s share would rise by 20 per cent a year for two years after the film’s release. Few films made money from spin-off products for a whole 24 months, and Star Wars would surely be no different. Lucas got the sequel rights as well, albeit with the proviso that any sequel had to be in production within two years of the film’s release or all rights would revert to Fox.

Most important amongst Lucas’ demands was that, if it went ahead, he wanted the film to be made by his own company, not by Fox. That way he could control the budget and ensure all charges and costs made to the production were legitimately spent on the film. The experience of watching Mackenna’s Gold being made while a student on placement a decade earlier had taught him just how much money a studio could waste, and on a film like Star Wars – which was both ambitious and would inevitably be under-budgeted – it was crucial that this did not happen. Control of the music rights also had a sound reason behind it. Universal were making a fortune out of an American Graffiti soundtrack that was simply a repackaging of old hits featured in the movie. Of the profits of this Lucas saw nothing despite having selected the tracks featured and fought long and hard for their inclusion in his film.

In March 1975, Ladd took Lucas’ draft to the Fox board. They passed it and budgeted the film at $8.5m. Characters bounced in and out of that script right up to the preparation of the shooting draft, dated 15 January 1976. This was tailored to be as close to the film’s proposed budget as possible, and contain as many of the ideas, characters and situations Lucas had spent the past few years developing as he considered feasible.

This draft is the first version of the script in which Kenobi dies fighting Vader. Previously he had been injured, but escaped with Luke’s party. Alec Guinness, who had already been cast, was initially unhappy with this change, but was persuaded by Lucas that a heroic death followed by appearances as a spectral voice would prove more memorable to audiences than his spending the last third of the film sitting on Yavin whilst the X-Wings went into battle.

Filming began on location in Tozeur, Tunisia on 22 March 1976. Before shooting Lucas sat his crew down and made them watch four films which he felt between them defined what he was after in Star Wars. Stanley Kubrick’s 2001 (1969), Douglas Trumbull’s 1975 Silent Running, Sergio Leone’s Once Upon a Time In the West and Fellini’s Satyricon (Both 1969). The Leone picture was full of the sun-blasted vistas Lucas wanted to evoke for Tatooine, and the Fellini film, with its aspects of travelogue and attempts to portray an entire society in a fly-on-the-wall manner gave an idea of the "documentary fantasy" approach the director was so keen on. All four films shared one vital element: they’re windows onto lived-in worlds remarkable to audiences but regarded as ordinary by the film’s characters.

The first scenes shot for Star Wars were those of Luke buying Artoo and Threepio from the Jawas outside his foster parents’ home. Producer Kurtz had allowed 11 days for the shoot, after that a borrowed army C130 Hercules was scheduled to pick up the cast and crew.

A few days into shooting, creature make-up man Stuart Freeborn was taken ill and had to be flown back to Britain where he was diagnosed with pneumonia. Other crew members contracted dysentery. On 26 March Tunisia experienced its first winter rainstorm for half a century, damaging equipment and exterior sets delaying filming of key scenes.

Lucas wanted the stormtroopers to ride ‘dewbacks’, dinosaur-like domesticated beasts that allowed the troops to move across the desert. One dewback was built, out of foam rubber stretched over a wire frame. It could only be used in the background and no one was ever seen riding one. The other live animal Lucas wanted to portray was a Bantha, a huge horned, shaggy beast reminiscent of a prehistoric mammoth. It was to be the mode of transport for the Tusken Raiders, faintly Bedouin, vaguely mechanically-enhanced humanoids who attacked Luke in the Jundland wastes. In the end, creating the beasts proved impossible, and while they were referred to in dialogue in scenes that were shot (‘bantha tracks…’) none of their sequences were lensed.

As hard as the shoot was on Lucas, he at least had an idea of what he was trying to do and how it would all fit together. The actors, suffering stomach troubles, sunburn and long days, were less clear. Anthony Daniels trapped inside an almost immovable fibreglass body suit suffered the worst. Twenty five years later he would give credit for helping him to get through the Tunisia filming to Alec Guinness. "He was incredibly kind to me…I firmly believe that I wouldn’t have completed that arduous task of shooting without him."

Once the Tunisian shoot was over, the cast moved to EMI Elstree Studios in Borehamwood, outside of London. Star Wars was being made in the UK because it wasn’t possible to shoot the film in Hollywood at that time, not that Lucas – with his lifelong disdain of LA itself – wanted to anyway. Star Wars required nine stages simultaneously, something that no Hollywood studio complex could guarantee at anything like sufficient notice. In March 1975 producer Kurtz had flown to Italy to look at studio space, but found nothing suitable. He then caught a plane to London, where Lucas joined him.

Together they scouted UK film studios. Pinewood was a possibility, but management insisted Lucasfilm hire their technicians, a condition which became a deal-breaker. Neither Shepperton nor Twickenham had enough sound stages (although the giant Stage H at Shepperton  - bigger than any stage at Elstree – would ultimately house one scene of the film) which left only EMI Elstree. Then losing £1 million a year, Elstree was being kept open more or less on the insistence of Harold Wilson’s government, whose allies in the Trades Union movement considered the closing of the facility unconscionable. Elstree had no staff, and anyone who wished to rent it had to supply their own technicians and much of their own equipment. Off-putting to many, it sealed the deal for Lucas and Kurtz, who wanted to move their own people in. They hired the facility for seventeen weeks starting at the beginning of March 1976.

To design and build the sets needed to turn to Elstree into a realisation of Lucas’s screenplay they hired John Barry, a British designer who had worked under Ken Adam on Barry Lyndon (Stanley Kubrick, 1975) a film Lucas admired enough to hire its costumier John Rollo as well.

Elstree’s two largest stages were given over to Mos Eisley Spaceport and the interior of the Death Star. Both the Mos Eisley hangar bay and the one inside the Death Star which replaced it on the same stage were constructed around the full size Millennium Falcon set created by John Barry’s protege Norman Reynolds. Built by Naval engineers at Pembroke Dock, Wales it was 65 feet in diameter, 16 feet high and 80 feet long. It weighed 23 tonnes.

The absence of Stuart Freeborn, still recovering from Tunisia, meant that most of the aliens seen in the Mos Eisley cantina sequence were completed by assistants and lacked any articulation at all. Unhappy with the scenes as shot, Lucas resolved to do to re-shoots back in the USA.

The last scenes to be shot were for the opening battle, as Vader and his stormtroopers boarded the blockade runner. With little time Lucas used six cameras, manning one himself (Kurtz manned another) and shot the sequence in two takes. The six cameras produced so many different perspectives on the action that even the duplicated events that are in the film are unnoticeable. The finished sequence, chaotic though the creation of it was, is amongst the best put together moments in the movie, a superb evocation of Lucas’ documentary fantasy approach, and the cameras dart in and out of the action like reporters shooting newsreel footage. Virtually the first live action seen in the picture, its style later went a long way towards convincing audiences that what they were seeing was somehow real.

Principal photography completed on 16 July 1976, although some re-shoots and pick up shots for the Tatooine sequences were undertaken in Yuma, Arizona in early 1977. Amongst those scenes shot were those featuring the Banthas. Lucas borrowed a trained elephant from Marine World, and had it dressed to resemble a more hirsute, fearsome pachyderm. Mark Hamill was unavailable to participate. He’d crashed his car of the Antelope Freeway in LA shortly before and was undergoing painful facial reconstructive surgery. Although Hamill should have been involved in the re-shoot, in scenes of Luke’s landspeeder moving across the desert, Lucas had no choice but to film them without him; he took a double to the shoot, dressed him in Luke’s costume and put Threepio in the foreground. Also re-shot, over two days in La Brea, California, were portions of the cantina sequence. New cutaways and background shots were filmed to be inserted into the Elstree footage in order to eliminate as of the unsatisfactory masks as possible.

While supervising editing of the film Lucas experienced chest pains, and was rushed to hospital where he was treated for a suspected heart attack. He was later diagnosed with hypertension and exhaustion, both exacerbated by his diabetes.

Fox were by now trying to book Star Wars into cinemas, and had picked a release date in May, long before the 4th July public holiday, long regarded as the opening weekend of summer. Fox wanted $10m in advance bookings for Star Wars, desperate to recoup an investment that internal studio sources had now decided was foolish. They secured less than $2m, and achieved that only by implying to theatres that they wouldn’t be offered Charles Jarrot’s much-anticipated The Other Side of Midnight if they didn’t sign up for Star Wars too. Before its release several exhibitors complained at this "block booking" and filed suits; Fox was later fined $25,000 for the practice, punished for forcing cinemas to agree to show something which was, by the time they paid the fine, the most financially successful movie ever made.

In early 1977 Lucas screened Star Wars for a group of friends, it was nearly finished – although the opening crawl was longer and many of the special effects shots were absent, represented instead by sequences from World War II films and real combat footage shot by the USAF. Among those present were Brian De Palma, Alan Ladd Jnr, Steven Spielberg and Jay Cocks. Martin Scorsese had been invited but troubles editing his own New York, New York meant he didn’t turn up.

De Palma hated Star Wars, and spent the post-screening dinner rubbishing it to anyone who would listen. Others present were unsurprised, De Palma had behaved in the same way during the group screening of Scorsese’s’ Taxi Driver; laughing loudly through Cybill Shepherd’s conversations with Robert de Niro, and at one point shouting "Shit!" halfway through a tense scene. Only Spielberg seemed impressed, and told Lucas that he thought Star Wars would take $100m. Lucas pointed out that nothing took $100m, and countered that Spielberg’s Close Encounters of the Third Kind would do better at the box office. The two directors wrote what they considered realistic estimations of what each other’s film would make in its first six months of release on the inside of matchbooks, which they then traded. By the time Lucas got round to opening Spielberg’s matchbook and saw the figure $33m in his friend’s scrawling hand Star Wars had already made ten times that.

Odd as it seems now, when every blockbuster is prefaced by months of breathless, unrelenting media "enthusiasm", Star Wars wasn’t released on a wave of hype or accompanied by an extensive marketing campaign. It was released (on 25 May 1977) to thirty-two screens, after a barely publicised premiere at Mann’s Chinese Theatre in Hollywood. It made $2.8m in its opening week, but didn’t receive a nationwide release for two months. Despite almost unprecedented success in preview screenings, Fox were still unsure of what to do with Lucas’ bizarre children’s film. Indeed it, only got a Hollywood opening at all because William Friedkin’s Sorcerer – which had been intended for this slot at Mann’s – wasn’t finished.

So negative had advance feeling about Star Wars been that Lucas left the country; he was still in LA on opening day, finishing the sound edit (he was unhappy with the copy playing downtown, and unknowingly embarking on a lifetime of revising his movie) but the next day he and his wife (and Star Wars film editor) Marcia flew to Hawaii, where they were joined by friends, including Spielberg and Amy Irving. It was an attempt to escape what Lucas felt would be the inevitable terrible reviews and wrath of the studio. Even when Ladd called him to share his excitement over the movie’s colossal opening weekend, Lucas was unmoved; all movies labelled science fiction did well in their first few days due to the business attracted by the neglected fanbase for such things. It was only when the film continued to do outstanding business and was expanded to more and more theatres that Lucas considered returning early from his holiday, and began to realise that the film he’d just delivered had changed his life.

As "Star Wars" expanded into more cinemas, and people began to queue round the block to see it, shares in Fox climbed from well under $10.00 to $11.50 each; over the next three months the value rose to $24.62, nearly trebling in price, such was the film’s value to the embattled studio. It was a magnificent vindication for Alan Ladd Jr, who had more than once had to intervene to stop colleagues closing down the film’s production completely. He had never lost faith in Lucas and his bizarre idea, but he was virtually the only person employed by Fox itself who hadn’t.

Just a few weeks before, as the end of the financial year approached, Fox had tried, and failed, to sell its investment in Star Wars to a German merchant bank as an emergency pre-tax write off.

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