Since its inception in 1948, the National Health Service has been a core element of life in the UK. Described as the closest thing to a national religion by former UK chancellor Nigel Lawson as well as several in the media, it is a hugely cherished and valuable social enterprise both in its scope and in the core principles which have held true since its earliest days.
Famously, the key element of the NHS is that its services are ‘free at the point of use’ regardless of your own status or wealth. It is often considered a great source of national pride that there exists a system with such a vast scope, so much so that it was prominently represented in the London 2012 Olympics opening ceremony as an exemplar of life in the UK.
However, as you may well be aware, the NHS has started to come under increasing pressure as of late owing to several factors, ranging from an aging population to huge leaps in medical science that have resulted in a much more varied ability to treat conditions that we could not in the past. However, while these are both great triumphs of science and social policy, it inevitably means that evermore pressure is being exerted on the NHS which operates from a limited taxpayer funding base. This ultimately means that as demands upon the NHS increase, there must be detailed consideration of which services must be priorities and how best to serve everyone with limited resources – rationing.
Although our guiding principle must always be doing what is best for the patient, as you progress through your medical training, these challenges will become clear as you must consider how to provide the best and most appropriate care in a cost-effective yet ethical manner. At the time of writing, some estimates of the NHS shortfall in funding have been quoted to be in the range of £20 billion by 2020 and while the Government has pledged to increase funding, it is likely that funding constraints and the discussions surrounding the best allocation of limited resources will become increasingly important.
Identifying areas of need
- Clinical Commissioning Groups
Following the coalition governments reorganisation of the NHS in the previous parliament, funding decisions are now taken by GP led Clinical Commissioning Groups across England, replacing the Primary Care Trusts. They are responsible for selecting which providers to choose for services in their area –for example blood testing as well as the priority given to funding in certain areas (for example tackling heart disease versus diabetes prevention). Naturally this gives rise to questions surrounding fairness of resource allocation as well as responding to needs of the individual versus those of the population. The perspective taken here is broader and examines the best way to deal with general trends of disease in healthcare.
- Ethics Committees
These are bodies that deal with patients on an individual or local hospital level. These are often referred to as priorities forums and existed as a subset of the aforementioned PCTs. There may also be committees or panels that examine requests for unusual or exceptional patient treatments that are not covered by the normal range of services provided. A typical priorities forum will form its own ethical framework when examining difficult issues. One example is that established by the Oxfordshire Area Health Authority 1, which is structured around 3 elements:
a. Equity – a non-discriminatory approach that aims to treat everyone equally and fairly
b. Patient choice – if there are multiple approaches of similar efficacy, the patient should be able to decide which to use in their treatment
c. Effectiveness and value of treatment – how valuable the impact of the treatment will be versus the value of other treatments
The need for ethical frameworks is not just a practical one but also now a legal requirement, following a decision by the Court of Appeal. These frameworks must be applied in such a way that takes account of the nature of the disease, evaluate the efficacy of the different therapies available and draft its policy in a way that reflects the evaluations made when applied to the individual.
There is also an argument that the European Convention on Human Rights (part of UK law following the Human Rights Act 1998) provides a right to medical treatment primarily under Article 2 (the right to life). Although this must be respected by authorities, given that resources in any healthcare system are finite, this must be balanced against a pragmatic approach to healthcare management. While the government cannot provide infinite resources, it must take a reasonable approach to resource allocation.
This also forms the basis of the reason why the courts have accepted that although the NHS has a statutory duty to provide medical cover, this does not translate into a duty to provide any and all treatment possible. As long as due regard is paid to the duty of providing medical cover for all, the limits placed on resources can be taken into account when deciding how to allocate treatments.
This argument has been used to deny funding for operations such as gender reassignment surgery where although it would undoubtedly improve the patient’s quality of life, the Court of Appeal has held that “precise allocation and weighting of priorities is clearly a matter of judgment for each Authority, keeping well in mind its statutory obligations to meet the reasonable requirements of all those within its area for which it is responsible.” 2
This however does not preclude local authorities from deviating from established policy and making exceptions in the case of overriding clinical need, given that there is an awareness that in each individual case there may be an extraordinary clinical need necessitating the consideration of treatment not routinely sanctioned.
- The Professional View
The GMC exhorts that above all else, the care of the patient must be every doctors concern. However, as stated before, in a realistic and pragmatic approach to healthcare management, consideration must be given to the doctor’s duty to other patients and the wider community, and these two competing interests must be balanced. The GMC has issued guidance in the form of ‘Priorities and Choices’ which may be of value to review for further reading on this topic.
In terms of dealing with ethical challenges on a case by case basis, there are several domains that must be evaluated when deciding on the best course of action
- Maximising Benefit
When evaluating the “best” allocation of resources, the decision can no longer just be taken on the basis of the individuals needs alone, it must also encompass those of the wider population. The notion of taking the decision that provides the maximum overall benefit in the perspective of wider over society is rooted in the notion of utilitarianism – a concept advocated famously by Jeremy Bentham in the 1800s. His fundamental view was the principle that the measure of right and wrong was rooted in the greatest happiness of the greatest number.
This perspective would argue for the limited pool of funds to be applied to the broadest range of inexpensive treatments that could be widely available to all or to interventions that have the biggest impact on disease processes. It is these principles which lead to the widespread adoption of statins – a cholesterol lowering agent in patients considered to be at risk of ischaemic heart disease. Some argue for even more widespread use, a source of controversy in recent years given debate over the side effect profile of such drugs.
The NHS does subscribe to this principle in some ways, namely the use of Quality Adjusted Life Years (QALYs). A neat summary of this concept has been produced by Alan Williams 3:
“The essence of a QALY is that it takes a year of healthy life expectancy to be worth 1, but regards a year of unhealthy life expectancy as worth less than 1. Its precise value is lower the worse the quality of life of the unhealthy person.”
While this may be used to make the judgement in the typically imagined scenario where one must debate whom to save in a crisis (choosing those who are younger for example as they have more QALYs to live), there are also several criticisms to taking such an approach. QALYs are a useful measure in extreme circumstances where the decision may seem obvious, but many decisions in reality are between treatments where direct comparisons are unfair and trying to directly compare the usefulness of a heart operation versus that on the brain seems absurd.
Furthermore, QALYs as they are used in the NHS are based on broad demographic analysis and fail to take into account individual agency and choice, a key part of being a responsible practitioner of medicine. Ultimately though, perhaps the greatest argument against such quality of life assessments are that they are potentially discriminatory, discriminating against the elderly on the basis of having limited high quality life years left and discriminating against the disabled on the basis that their quality of life is less than someone who is fully able. At it’s most extreme, the argument could almost entirely deprive this demographic of care in favour of saving more QALYs in those who are younger and free of disability, so a balance must be struck.
- Distributive Justice
This principle dates back to the Grecian era and Aristotle, who initially set out the notion of distributive justice in his “formal principle of equality” stating that equals should be treated equally and unequals treated unequally in proportion to their relevant inequality. This contrasts with utilitarianism which would treat unequals equally without taking any notice of their needs or the factors making them unequal. While Aristotle’s initial formulation was centred around the notion of merit, this was further developed by John Rawls in his “Theory of Justice” basing it around need.
Rawls interpretation of a fair system was one where resources were directed to those in society who were most disadvantaged, treating unequals unequally, but understanding their disadvantages and compensating for this. However, this is open to debate in terms of its true fairness, given that some groups will be deprived of resources and that judgements of disadvantage can be widely varying.
Further muddying the water is the notion of personal responsibility. Inequality in supplying healthcare on the basis of race or sex would be unthinkable in any modern society but debates often rage over whether resources should be allocated to those who are seen to have brought it on themselves. Topical issues include whether to provide joint replacements to obese patients, and this has even been subject to local variation within the NHS. The debate over whether to provide such patients with weight loss surgery has been another hot topic. From the utilitarian perspective, this scientifically proven intervention to improve patients wellbeing could ultimately save the NHS large amounts of money and time, given the reduction in rates of Type 2 Diabetes and Heart disease (which ultimately necessitate long term management and costly stays in hospital). However, the notion of providing “free” weight loss surgery to those perceived to have caused their own ill health rankles with some and does not fit into their notion of distributive justice.
Making a Decision
Ultimately given the divergent approaches taken to how best to allocate limited NHS resources, it would seem impossible to make a decision that is perceived as fair. Indeed, there is a certain degree of variation within the NHS of what treatment is available where (often described as the postcode lottery) further reinforcing the sense of unfairness when decisions are made not in the patient’s favour. This also remains a politically sensitive issue, with well publicized cases of drugs being unavailable due to the very principle of resource allocation in mind, which nevertheless engage public opinion and garner much sympathy for the sufferers (an example in recent years would be that of Herceptin in treating breast cancer – a drug that increases duration of survival and was famously the subject of several appeals and reviews.)
To both be fair and give the appearance of being fair, there must be a process that acknowledges and recognised the varying ethical principles involved. Research by Norman Daniels at Goldthwaite 4 has suggested that any such process must include the following elements:
a. Publicity – the decision made and the reason for the decision must be in the public domain
b. Reasonableness – the decision must be based on a set of principles that are acceptable to the people involved in the process
c. Appeal process
d. Enforcement – whether this be a public or voluntary process
- Rationing is an inevitable element of any finite system
- Decisions are taken by Clinical Commissioning Groups and Ethics Committee who have a legal basis to ration healthcare or make exceptional decisions outside of policy
- The principle of utilitarianism must be weighed against that of distributive justice
- Decision making must be public, reasonable and enforceable, with a mechanism for appeal if the outcome is disputed
1 T.Hope, N. Hicks, D.J.M. Reynolds, R. Crisp, S. Griffiths, Rationing and the health authority, British Medical Journal, Oct 17, 1998.
2 R v North West Lancashire Health Authority ex p A and others 2000 1 WLR 977
3 A. Williams, ‘The Value of QALYs’, Health and Social Service Journal July (1985), 3.
4 Daniels, N (2000) “Accountability for reasonableness”, British Medical Journal 321, 1300-1301