Desperately Seeking Solutions

Rationing Health Care

David J. Hunter

• Publisher: Routledge
• Year: 2018
• ISBN:
  9781317888376
• Edition: 1
• Topic: Economia
• Subtopic: Macroeconomia

Following the Governments health reforms in 1991 rationing has been put firmly on the agenda. This book identifies and clarifies the numerous political and ethical issues surrounding rationing in healthcare. Drawing upon international examples it offers a critical overview of the approaches to rationing and makes practical proposals for its management.
Desperately Seeking Solutions challenges the assumption that all health services are inherently subject to rationing as demand invariably outstrips supply and examines this within a comparative framework. The author critically evaluates the extent to which rationing has always existed and should exist within the NHS, although until recently it operated on an implicit rather than explicit basis and was bound up with clinical judgements rather than purely financial considerations. The author questions whether calls for explicit rationing are actually desirable and potentially feasible.

Part One
The Dilemma of Rationing Health Care: Origins and Definitions

Chapter 1
Introduction

When the case of Child B hit the headlines and came to national prominence in Britain in 1995, it dramatically put the issue of health-care rationing before the public and firmly on the political agenda (see Box 1.1). Whatever the rights and wrongs of the affair and the way it proceeded (Cambridge and Huntingdon Health Commission was praised by ministers for its sensitive but firm handling of the issue) it did achieve one thing: it exploded the myth that the National Health Service (NHS) was prepared to fund any treatment, especially one that was essentially untried and experimental. The Child B case was an example of decision-making that sought to be principled and informed by expert opinion and evidence which suggested that to proceed with treatment would neither be cost-effective nor enhance the patient's quality of life. The case, and the emotions it aroused, were a perfect demonstration of the complexities and dilemmas which abound in all such individual circumstances.

There are no right answers in such cases - only individuals both inside and outside the NHS groping for a defensible solution while, at the same time, desperate to find one. But this did not prevent many onlookers from insisting that there was a right answer. The problem is there were so many so-called 'right' answers ranging from the decision the health authority made at one extreme to the view that a better funded service would not have necessitated such a denial of treatment, regardless of its experimental and unproven nature, at the other extreme.

There will be many more cases like Child B. Whether they will be handled any differently will depend on the individual circumstances surrounding each case and on how rationing is viewed at the time by politicians, local practitioners and managers, and the public. Are such decisions to be left to individual health authorities, and their medical advisers, to resolve as they judge appropriate, as the previous (and probably also the present) government considered to be the correct way to proceed (Secretary of State for Health 1996)? Are they to occur within a nationally determined explicit framework or set of rules governing decision-making in such cases? Or will it be decreed that the NHS will only cover particular core services and will exclude a range of treatments and interventions which can only be obtained through private means? Each position has its pros and cons as well as its supporters and detractors. It is the purpose of this book to tease out, and explore systematically, all these matters to aid understanding of both

Box 1.1 The case of Child B

In March 1995, Child B – a 10-year-old girl suffering from leukaemia – became the subject of a legal action brought by her father against Cambridge Health Authority's (now Cambridge and Huntingdon Health Commission) decision to refuse to spend £75 000 on further treatment for the girl. The High Court of Appeal ruled that the health authority had acted rationally and fairly in reaching its decision.

The case is notable because it had all the ingredients of a classic example of health-care rationing. It was a matter of life and death and brought to public attention the daily decisions made by doctors about who to treat and how. Views were sharply polarized: some supported the health authority's decision while others (probably the majority) argued that Child B should receive whatever treatment was available regardless of cost and the unproven nature of the treatment.

The facts of the case are these. The girl - Jaymee Bowen - had been diagnosed as suffering from leukaemia in 1990. She was given two rounds of chemotherapy and a bone-marrow transplant was carried out in 1994. She suffered a relapse in January 1995. The possibility of further treatment - chemotherapy possibly followed by a second transplant – was discussed. But the doctor, supported by other specialists, judged that there was little to gain from subjecting Child B to further suffering when the prospects for success were so slight: probably no more than 10 per cent. The father did not accept this judgement. He found a private specialist prepared to treat Child B who put the chance of success at around 20 per cent. But the health authority refused to pay for the proposed treatment which prompted the father to appeal to the courts. Although the father lost, a private benefactor provided the cost of treatment. In the event, despite further treatment, Child B died in May 1996.

the rationing issue in health care and the attempts by governments of all political persuasions in the UK and overseas to find an appropriate policy response.

As events subsequently proved, this book was written during the final months of the Conservative government's term of office although this was not known for certain until 2 May 1997 when a new Labour government assumed office after the Conservative Party suffered a resounding defeat in the general election held on 1 May. For some 18 years, UK health policy had been shaped and reshaped by Conservative ideology and values. During this period, the NHS was reorganized on successive occasions and its management arrangements and systems strengthened.

With the new Labour government just over a month old (at the time of writing), its health policy remains unclear and is still evolving. Apart from a wish to end the NHS internal market and commitments to honour the previous government's expenditure plans, reduce management costs and reduce waiting lists, the government's promises are few and imprecise. On many issues - notably the development of a primary care-led NHS – the new government's position is little different from its predecessor. On issues like rationing, the government has yet to adopt or declare its position. It will need to do so at some stage soon because pressures on resources are intensifying. Unless new money is to be found or imaginative ways of using existing resources identified, the government will find itself being heavily lobbied by professional bodies and others to define what the NHS will and will not cover. Although the Labour government could adopt the position maintained by the former Conservative government, which was to resist repeated calls to lead a national debate on rationing and not to have an explicit national policy on the subject, it might find such a stance uncomfortable and in conflict with its commitment to a National Health Service in which notions of equity and social justice are uppermost as central principles to be enshrined in health policy and defended in its implementation. However, for reasons explored in this book, and despite its quite different principles and values, it may well prove to be the case that Labour will not adopt a markedly different stance from its predecessor on the subject of health-care rationing. Of course, a dramatic new departure cannot be ruled out in the case of a government which has already demonstrated its capacity to surprise and do the unexpected. But the NHS and Labour are bound up in all kinds of ways and while that can, paradoxically, create the circumstances to be radical and bold, it also makes for caution and a reluctance to do anything that might smack of a betrayal of the NHS's founding principles to provide comprehensive care to all those in need of it. As this book argues, even if it were to be a credible, legitimate and ethical position to adopt there is little to be gained politically by a government seeking to be rational and explicit about rationing.

Rationing: the health policy challenge

Health care systems everywhere are experiencing a series of policy dilemmas. None of these is especially new, even if packaged and presented as such, but governments continue to wrestle with them in an attempt to find a 'right' answer as if it were axiomatic that one existed somewhere waiting to be discovered. It is conceivable, and probably the case, that no 'right' answer or lasting solution exists and that the challenge facing governments is not to conduct a futile, and ultimately illusory, search for one but rather to seek an acceptable accommodation between various competing pressures and to ensure that the means exist to allow such an outcome to occur. In fact, in Simon's words, policymakers generally 'satisfice' and adopt an approach based on 'bounded rationality' despite the pretence that they act and behave optimally (Simon 1957). In plain language, they do not seek perfection, which is unattainable, but are in practice content to settle for less imperfection.

A difficulty confronting policy-makers is that they rarely wish to acknowledge publicly any limitations on their ability to act decisively or rationally even if, privately, 'satisficing' describes precisely how they behave and conduct their business. They are, therefore, forever put in the position of desperately seeking (rational) solutions to the 'possibly unwinnable dilemmas of social policy' (Heclo 1975: 152).

Rationing health care, it will be argued, is par excellence one of those unwinnable dilemmas, transcending the different funding and structural arrangements which countries have adopted and adapted for their respective health-care systems. Whatever the terminology employed to describe the activity – and less pejorative alternatives to rationing are 'priority-setting' and 'making choices' – its implications are clear enough. There are, it is asserted, simply not enough resources (financial and human) to meet all the demands placed upon them and there are never likely to be. If no controls or boundaries are placed on the public's seemingly voracious appetite for health care then a country's whole GNP could be consumed by health care with one half of the population looking after the other half. The dilemma is that more is unlikely to mean better and is neatly summed up in Wildavsky's phrase: 'doing better and feeling worse' (Wildavsky 1979). No matter what resources are allocated to health care, and regardless of the increased activity obtained from these, they are never likely to be sufficient to keep pace with growing needs and demands. Resources are finite, it is alleged, whereas needs, and certainly demands and wants, are infinite.

Need versus demand

There are fierce divisions of opinion on this issue which will be explored later in the book. But the line-up of contestants looks something like this: first, there are those who distinguish between need and demand, arguing that need is finite while conceding that demand is probably infinite and that the job of a public health-care system is to concentrate on need, not demand; and then there are those who believe that the present level of funding on health care may be sufficient to meet legitimate claims on them or even too generous, rather than deficient, as various vested interests and the media would have us believe, and that before considering demands for new resources for health-care services there is a prior need to be sure that such investment will demonstrably improve health status. For this second group, which also happens to come closest to the British government's position, explicit, hard-nosed rationing is seen to be a desperate act: an admission of failure to manage resources wisely by, inter alia, failing to concentrate existing and new investment on effective medical interventions and to disinvest in those shown to be ineffective. Evidence-based medicine (EBM) represents the 'new rationality' for this group. To talk of rationing in advance of rooting out as far as possible all known ineffective practices is defeatist, premature and unethical. Critics of this somewhat Utopian view of the place of, and prospects for, EBM call for a more cautious approach and an acknowledgement of the complexities and limitations of EBM (Hunter 1995b; Tanenbaum 1995; Klein 1996; Charlton 1997). Quite apart from the difficulties confronting researchers in terms of acquiring sound data and information, there are major barriers to be overcome about how the evidence is then applied in practice. In the NHS's Research and Development strategy, from which EBM has sprung, the 'D' is as important as the 'R'. These issues are taken up inChapter 4.

Whatever the outcome of the debate over whether or not need and/ or demand are finite or infinite, the present orthodoxy or conventional wisdom in all political systems is that difficult choices have to be taken about who to include and treat, and who to exclude and not treat. Few, other than those who challenge the very premises on which the debate is founded, deny that this is the case. Debate, often heated, is confined to who should take these decisions and how in terms of the procedures and processes governing them.

On the who question, should it be politicians, managers, doctors, the public or some combination of these groups who should be responsible for taking decisions about who to offer care to and whom to deny it? And, if so, how should they be engaged in the process and held to account for their actions? How explicit should the process be in contrast to the emphasis on implicit, by which is usually (and misleadingly) meant covert, decision-making? What information or evidence should be available to decision-makers - whoever they are - and how, if at all, will they be equipped to interpret it? Moreover, does it exist anyway given that a substantial amount of clinical care has not been evaluated for its impact on health? These and other questions lead to the second big question: how to ration health care. The how question gives rise to a number of issues: in particular, and depending on the outcome to the first question, what procedures should be followed to ensure that decisions are taken responsibly and transparently, and at what level in the hierarchy of decision-making should they operate: macro (national), meso (local) or micro (doctor-patient) levels or at a mix of levels?

Should rationing be explicit or implicit?

The book is primarily concerned with these types of question in the context of the British NHS, especially in its post-1991 reform phase when rationing took on a whole new meaning as a result of the introduction of a purchaser-provider relationship and the related notions of an internal market operating according to competitive principles. Whereas the former, i.e. pre-1991, integrated structure of planning and provision allowed rationing decisions to be made implicitly by health authorities and clinicians acting beyond the public gaze, the market-style changes with their emphasis on separating purchasing and providing responsibilities on the one hand, and on giving an active voice to users on the other, have resulted in rationing being regarded as an activity which is much more explicit and open to scrutiny. In a democracy, it is argued, this must be a desirable development and wholly in keeping with the approach to participatory democracy favoured by many political reformers who see the former implicit system as deficient in every way but especially in its perpetuation of an outmoded, elitist and paternalistic system of decision-making in which users were to remain passive recipients of whatever the professionals thought was best for them.

A key theme of the book is the debate between those who subscribe to the view that rationing should be explicit, and given a national lead by the government, and those who take a rather more subtle and less naive view of how health care is practised and who believe that implicit rationing is the best policy option – bearing in mind that however the subject is viewed there is no perfect or right answer.

This author has already nailed his colours to the mast and declared his position as a firm believer in implicit rationing (Hunter 1993a; 1995a). The position is based on pragmatism and realpolitik. While explicit rationing may be intellectually irrefutable, and the rational response to adopt in a perfect world, the reality is not conducive to the serious adoption of such a stance. The position will be elaborated as the book unfolds. Least it be thought that those who remain wedded to implicit rationing are an élitist band of diehard reactionaries who possess a somewhat romanticized and paternalistic view of doctors and medical power on the one hand, and a dismissive view of patient power or consumerism on the other, nothing could be further from the truth. The issue is not whether change is required in current practice - it is - but rather on the kind of change and where and how it is needed and should be implemented. This is a very difficult set of issues – much more so than calling (naïvely and simplistically in my view) for a national, explicit response which might take the form of either a menu or list of those procedures which are to be included in the NHS and those which are not, or a set of guiding principles for decision-makers to use which are likely to be so general and non-specific as to be virtually meaningless. Hence the term adopted to describe the approach I favour - 'muddling through elegantly' (Hunter 1993a) - which will be unpacked in Chapter 6. The 'elegantly' is important because it signals that merely muddling through is not sufficient but is in need of modification and improvement. However, it also acknowledges and accepts that some decisions are so difficult, and 'unwinnable' in Heclo's (1975) term, that muddling through is not only the most likely option to be adopted in practice but also the most realistic and pragmatic. Rather than be rejected it should be positively embraced.

It needs to be emphasized that while rationing clearly raises many political and ethical issues with which politicians, managers and practitioners are almost daily struggling to come to terms, if we are honest and realistic then some of these issues will simply not be confronted because they cannot be. In the cut and thrust of politics they will quite simply be fudged. There may be a pretence cunningly fashioned to suggest that they are being, or have been, addressed but this will only mislead by deception and connivance. Yet a policy response based on fudge may be considered, and prove to be, a perfectly reasonable, even rational, response if policy stasis or gridlock is not to occur.

A central theme of this book is that the currently fashionable managerialist notions of user empowerment, explicitness and transparency, and the desire for constantly probing, tinkering with, and subjecting to bureaucr...

Table of contents

• Cover
• Half Title
• Title
• Copyright
• Dedication
• Contents
• Preface
• Acknowledgements
• PART ONE The Dilemma of Rationing Health Care: Origins and Definitions
• PART TWO The Health-Care Rationing Debate in the UK: a Review
• PART THREE Health-Care Rationing: Lesson-learning and Future Prospects
• References
• Index