An ageing population means the question of whether some patients have more right to treatment than others will increasingly cause financial and moral conflicts. So whose quality-adjusted life year is it anyway, asks Alison Moore
Imagine you are a health service commissioner. You have a choice: do you commission services for elderly people that could enable them to live on for several years in relatively good health, or do you pick health promotion for younger people who are at risk of premature death?
Even if they are rarely put so bluntly, such moral dilemmas are at the heart of NHS rationing decisions. But the principles behind them are unlikely to get aired in public, just as most criteria, such as "fairness" and "equality", rarely get much explanation.
NHS Confederation policy director Nigel Edwards describes the situation as "an elegant muddling through", while Faculty of Public Health president Alan Maryon-Davis points out many such decisions are made on a combination of historical precedent and pragmatism.
But with limited resources - and limited growth in resources over the next few years - choosing one option inevitably means neglecting another. There are a number of principles that can be used to decide where money is spent.
On one side is the utilitarian stance - which underlies the use of quality-adjusted life years - of using limited resources to provide the greatest health benefits for the greatest number of people.
More than a decade ago, health economist Alan Williams argued in the BMJ: "If we start with the proposition that the objective [of the NHS] should be to improve as much as possible the health of the nation as a whole then the people who should get priority are those who will benefit most from the resources available."
This would suggest money should be spent where it gets the greatest bang per buck in terms of cost per QALY. Traditionally, though, QALYs are neutral - it does not matter who gets the health benefits. Such reasoning works against expensive interventions that do relatively little to improve either quality or length of life, such as some end-of-life cancer drugs. It could, however, justify a shift in spending towards some public health interventions that are low cost but known to be effective. And it could favour treatments mainly used with younger people with more years to gain.
"In theory it would affect those interventions which are only marginally cost-effective and that are used for elderly patients rather than younger ones," says Aki Tsuchiya, reader in health economics at Sheffield University.
As Professor Williams added in his original article, "improving the health of the nation as a whole is likely in some circumstances to discriminate indirectly against old people".
He went on to argue that people who had enjoyed reasonable health and had had a "fair innings" should "exercise restraint" in the demands they put on the health service.
However, York University senior lecturer in social policy Richard Cookson says there is already a double whammy effect from QALYs for older people: their potential extended lifespan is less but the value of each year of life is also rated as less than for a younger person. Both raise the barrier for treatments targeted at older people.
Infringement of rights
On the other side are arguments that hinge on concepts of moral rights. In a response to Professor Williams' original article, Oxford University professor of clinical geratology John Grimley Evans argued: "It is unethical to use age as a criteria for depriving people of healthcare from which they could benefit." He argued the physiological condition of a patient should be considered, rather than depriving them of treatment on grounds of age.
Many in the NHS would feel comfortable with a concept of equal right of access to healthcare or equal consideration of entitlement regardless of personal characteristics, such as age or sex. Denying older people interventions on grounds of their age, rather than other factors such as co-morbidities, is one example where moral rights could be seen to be infringed.
"It means you penalise elderly people for getting old and instead say resources should be targeted at problems which relate more to income, education and lifestyle than access to NHS care," says Plymouth University professor of health policy Sheena Asthana. "Moreover, the fair innings argument penalises the very group of people who created the NHS and who have effectively paid for it over the past 60 years. I don't feel very comfortable about that."
Those working with older people point to discrimination which already exists. Age Concern England health policy manager Philip Hurst says many NHS preventive services, even those which can both improve quality of life and avoid costs in the acute sector, are not tailored to meet the needs of older people. "It is just as important to promote healthy lifestyles to older people as it is to younger people," he says.
Meanwhile the government is sending out mixed messages: age is likely to be included in the forthcoming Equality Bill, which would put duties on public bodies not to discriminate, but is not mentioned as a reason not to discriminate in the proposed NHS constitution.
But should we be neutral about whom a treatment benefits, whether the benefits are in the immediate future or, in the case of health promotion or prevention, where lives will be saved and health improved many years hence?
All the above arguments came out strongly at a recent National Institute for Health and Clinical Excellence meeting in Plymouth, where renal cancer sufferers argued that treatments that offered benefits now should be funded over public health initiatives, says NICE clinical and public health director Peter Littlejohns.
King's Fund chief economist John Appleby points out that it is possible to change QALY calculations to give more weight to those who are deemed more "deserving", something health minister Ben Bradshaw seemed to be suggesting when he told a Labour conference fringe meeting "maybe we could give greater value to those last weeks of life".
Distributing resources to enable everyone to have a reasonable chance of getting a fair innings would require significant investment in health promotion and prevention, while ensuring that those at risk of early death have good access to services if they do get ill. That does not explicitly divert resources from those who have already achieved a fair innings. That might be a side-effect in a cash-limited system. But there might be other potential spending patterns which would maximise QALYs.
"A significant goal of the NHS is to be fair," says Professor Appleby. "That has a cost - what cost are we willing to bear to be fair or equable? There will be some trade-off with efficiency."
A job for doctors
Manchester joint health unit senior research officer John Hacking says: "If you are trying to go beyond equal access it is inevitably redistribution or rationing. But if you are serious about it you have to try to get the least healthy people improving. At the moment, health inequalities are actually worsening. It would be wonderful if we could stabilise that, let alone start to improve it."
And many recent documents discussing the future of the NHS emphasise levelling up of services or access to reduce inequality rather than any redistribution of resources.
In its regional Darzi strategy, NHS East of England discussed targeting those most in need to "ensure that they, as well as everyone else who will benefit, get the health interventions they need as quickly as possible".
NHS West Midlands has done some research into public attitudes on the issue. Strategy director Peter Spilsbury says there is evidence the public feels the NHS is failing to head off health problems and that more could be done in terms of upstream interventions. He adds that the public also seems to recognise there is a trade-off involved. But the extent to which the SHA's own thinking is currently underpinned by a coherent set of principles is less clear.
"We think we are fairly rational but I wish I could say we had a fantastic philosophical basis [for our decisions]," he says.
The trouble with translating any concept of fairness or equality into practice is that there are effectively several levels of resource allocation operating in the NHS. At a national level there is a top-down system, involving primary care trust allocations and NICE decisions, which are made on fairly clear criteria. At the patient level, meanwhile, some individual decisions will be made by clinicians according to circumstance.
And the two systems seem to be rubbing together like tectonic plates at PCT exception committees, where clinicians call for patients to get treatments which may not have been approved by NICE or have been ruled against locally.
"Governments do not want to get into a decision on whether Mrs B gets another drug and lives for another two months," says Professor Appleby. "The implicit deal is that that is a job for doctors, who often find ways of talking to patients and their family about decisions. I think when things end up in court it is often because that [process] has gone wrong."
There is little research into reasons behind local decisions. But an article in the Journal of Medical Ethics in January asked people involved in priority-setting at PCT level about the principles behind their decisions. Age of patient came up in a number of cases, but views ranged from those who thought children should receive priority treatment because they had their whole lives in front of them to others who argued the elderly should be prioritised because of their previous contribution to society. There were also disagreements about the priority that should be given to interventions with deferred benefits that might cost the NHS now but deliver benefits in the future.
Investing in health promotion among those at risk of a lifetime of poor health to save money in the future and reduce the burden on the NHS when many of us will need it most is another consideration. A generation of unhealthy young people will coincide with a generation of baby boomers needing considerable NHS resources as they reach their seventies. So diverting resources now could be justified by future savings but this would rely on effective health promotion.
But Professor Asthana argues that the evidence base for such action is not that strong and that many of the determinants of ill-health, such as poor housing, are outside NHS control.
Undermining support Taking action now to reduce future burdens on the NHS could increase its stability and the level of support for the service. Conversely, if the NHS has to cope with the full burden of unhealthy lifestyles and preventable disease, it may not be able to provide a high standard, comprehensive service. The middle class could "top up" with insurance or become self-payers, reducing the NHS to a safety net service for those who cannot afford something better.
This in turn could undermine public support among the middle class - why pay taxes for something you do not use? - and threaten its very existence. And not providing adequate services for older people who have contributed to the NHS all their lives could have a similar effect.
"It is not just about morals and values, there's a whole lot of questions about where the NHS is going," says Professor Asthana.
What do the public think?
It is hard to be certain what the underlying principles are for the public when they think about resource allocation in the NHS.
The academic literature on the issue is often contradictory and public responses can be influenced by the phrasing of the questions.
"My feeling is there is pretty strong broad public support for an allocation of resources to reduce inequalities in health, compared with an alternative allocation that might improve overall health more, but would not reduce or maybe even increase existing health inequalities," says Aki Tsuchiya of Sheffield University.
Recent research on "equity weighting" (how to decide where resources should be allocated) by Imperial College London's Paul Dolan, based on surveys of the public and NHS workers, suggested there is a general aversion to inequality and greater value given to the health of children, but that people who were responsible for their own ill-health were given a lower priority.
Severity of ill-health was also important.
Work by NHS West Midlands on public priorities as part of its regional Darzi review used focus groups and a wider telephone survey.
The work showed support for spending money on health prevention in principle, but this faded when participants were asked where extra money on the NHS should be spent, with 59 per cent saying they wanted it to go to treat people who are unwell, against 24 per cent saying that it should go on helping people to stay healthy.
But there is the potential for public consultation to lead to some unsavoury decisions. Would the public, for example, want to discriminate against those deemed to have damaged their own health? The introduction of such moral judgements into resource allocation decisions would make many managers shudder.
The closed world of open decision making
Making decisions that deny some people treatment or could be seen as distributing resources unfairly is always a fraught business and one that frequently leaves NHS organisations open to criticism.
The National Institute for Health and Clinical Excellence is acutely aware of this and has written the concept of "procedural justice" into the way it works.
"This focuses on ensuring the processes by which healthcare decisions are reached are transparent and that the reasons for the decision are explicit," says its guidance on "social value judgements".
The body says the way it does this is by making decisions in public, only looking at relevant grounds for a decision and building in opportunities for challenge and revision.
But this standard of decision making is not replicated throughout the NHS. Finding out what decisions PCTs are making on new drugs - and who makes these decisions - can be a challenge. And the ongoing furore over patients being denied life-extending drugs in some areas while they are available in others has partly centred on the obliqueness of decision making.
Some do have explicit criteria on assessing investments and requests to exception committees. Enfield PCT, for example, has a weighted scoring system, reflecting both cost and clinical effectiveness and "equity considerations", which it uses to assess priorities.
Other PCTs admit to using both utilitarian and equity arguments but are less specific about what weighting should be given to each of these, or what would be an acceptable trade-off between them. Some also reject the argument - adopted by NICE - that treatments which are the only ones available for certain conditions should be given a higher weighting.
"PCTs have been driven by their exception committees and universally they have not put in a robust system, while they are also very vulnerable to judicial review," says NICE's Peter Littlejohns.
"I think there will always be the need for some local decision making but there should be national standards for it."
And he points out that having a more robust process does not necessarily mean more spending; Oxfordshire PCT is considered to have a particularly strong process yet in a recent survey was one of the PCTs least likely to agree to fund drugs for rare cancers.
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