Health Care Anal DOI 10.1007/s10728-014-0275-6 ORIGINAL ARTICLE

Fallacy or Functionality: Law and Policy of Patient Treatment Choice in the NHS Maria K. Sheppard

 Springer Science+Business Media New York 2014

Abstract It has been claimed that beneath the government rhetoric of patient choice, no real choice exists either in law or in National Health Service (NHS) policy (Whiteman in Health Care Anal 21:146–170, 2013). Thus, choice is considered to be a fallacy in that patients are not able to demand specific treatment, but are only able to express preferences amongst the available options. This article argues that, rather than considering choice only in terms of patient autonomy or consumer rights, choice ought to be seen as serving other functions: Choice serves as a mechanism of destabilisation, i.e., as a lever for change. This is apparent at the level of patient and doctor, and at the level of patient and health authority, but even more so, at the level of government. Patient choice, rather than benefiting the individual, can have effects on a wider scale. It encourages change and reform in healthcare practices and in the NHS institutions. Keywords Patient choice  National Health Service (NHS)  Fallacy  Functionality  Destabilisation

Introduction In her paper, ‘The fallacy of choice in the common law and National Health Service (NHS) policy’, Whiteman [107, p. 167] asserts that the language of patient choice in the NHS is ambiguous and that choice, as a term, ought to be abandoned. The definitions and interpretation of patient choice itself were confusingly linked with other concepts which themselves were open to interpretation, such as autonomy and consent. Although healthcare law generally safeguarded negative patient choice, subject to the assessment of capacity, it did not encompass positive choice or M. K. Sheppard (&) Department of Law, Queen Mary University of London, Mile End Road, London E1 4NS, UK e-mail: [email protected]

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demand. Because of judicial deference to the medical profession, patient choice was rarely taken into account in legal decisions [107, p. 147]. Likewise, patient choice, in NHS policy, was a recent development, which suggested that people should be offered a choice of treatments, rather than only a choice of where and when to be treated. However, despite increasing choice rhetoric, in reality, NHS practice did not permit patients to demand treatment or even improve access to care [107, p. 164]. The author therefore concludes that the existence of patient choice in law and practice was an illusion to be dispelled. Greater transparency required an acknowledgement that all that was open to patients was an expression of preferences in favour of reasonable and available treatment options [107, p. 164]. Although Whiteman’s reading of patient choice and its possible ambiguities has certainly much to commend it, this paper argues that considering choice only in terms of rights or liberal autonomy does not explain the different meanings that are attributable to choice at different levels of healthcare and does not explain the consequences of patient choice. While the interpretation of choice at the microlevel, i.e., at the level between doctor and patient, may well be explained in terms of autonomy and liberal rights, choice at the meso- and macro-levels is open to different interpretations. This paper suggests that, at the meso-level, choice can be viewed as market mimicking consumer choice, rather than as liberal choice and autonomy. At the macro-level, it is argued that choice is employed by policymakers as a strategy with specific political objectives. Linking choice at all levels of healthcare is the theme of destabilisation, which is developed further in this paper. According to the Oxford English Dictionary definition, destabilisation denotes upsetting the stability of or causing unrest in a system. The notion of destabilisation is borrowed from Sabel and Simon’s [93, p. 1020] concept of ‘destabilisation rights’ in public law and is defined as ‘claims to unsettle and open up public institutions that have chronically failed to meet their obligations and that are substantially insulated from the normal processes of political accountability’. Rather than referring to destabilisation rights, destabilisation is described as the possible ramifications on the status quo of the healthcare system of actual or threatened litigation by patients who have been refused their treatment choice, i.e., effects that extend beyond the immediate parties to the actual or intended action in tort law at the micro-level. At the meso-level, destabilisation is described as the disrupting effects of an actual or threatened judicial review challenge by a disgruntled patient against a public health authority. Lastly, at the macro-level, destabilisation is expressed as the intended effect of patient choice policies that encourage reform in the institutional architecture of the NHS, i.e., in the incumbent institutions [8, p. 251]. This paper is organised in seven sections. Following the introduction, the first section introduces choice in its historical context in the NHS and describes the evolution of choice from the choice of where and when to be treated to the choice of treatment. The next section discusses treatment choice as macro-level policy with reference to the concepts of the personalisation of healthcare and the responsibilisation of the patient. The third section considers treatment choice at the micro-level and its evolution in the common law, both in terms of claims for specific treatment under the law of tort and as an infringement of the right to respect for one’s private

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and family life under Article 8 of the European Convention of Human Rights (ECHR) [45] and claims under the law of negligence for medical failure to disclose treatment options. This section is followed by an explanation of the effects of patient treatment choice claims at common law with particular reference to the impact of legal claims on the professional guidance of the General Medical Council (GMC). The fourth section discusses patient treatment choice in public law at the meso-level, which is followed in the fifth section by a discussion of the impact of these claims on the actions of health authorities. The final section discusses the destabilising effect of treatment choice at the political or macro-level. This paper’s focus is primarily on domestic UK developments. It excludes a discussion of the Patient Mobility Directive [74], although the Directive serves as a poignant example of the effect of legal uncertainty on political actors and organisations that is caused by the risk of patients who claim unauthorised cross-border healthcare; such uncertainty led to the engagement of the UK government and the NHS and to the eventual drafting and adoption of the Directive [100].

Development of Patient Choice in NHS Policy From a historical point of view patient choice played no role in the original NHS settlement. The essence of the founding values of the Health Service was outlined by Bevan at the time of the introduction of the National Health Service Bill in the House of Commons as follows: ‘[T]o divorce the ability to get the best health advice and treatment from the ability to pay and to provide the people of Great Britain, no matter where they may be, with the same level of service’ [61, 62, 51]. The leaflet, The New National Health Service, which was distributed to every household, confirmed Bevan’s vision: It [the Health Service] will provide you with all medical, dental, and nursing care. Everyone—rich or poor, man, woman or child—can use it or any part of it. There are no charges except for a few special items … But it is not a charity. You are all paying for it, mainly as taxpayers [106, p. 24]. Although the objectives of the NHS were further articulated by Royal Commissions [92] and were expanded by later government documents [15, 17, 21, 22, 95, 96] and the NHS Constitution [27], it is possible to condense the early documents to four settlement values: comprehensiveness, universality, equity of access, and free at the point of delivery. The opacity and ambiguity of these values, which have been apparent from the outset [106, p. 22], meant that they were able to command universal support [50, p. 22]. In more recent times, these settlement values have been linked with the new policies of ‘efficiency’ and ‘freedom of (treatment) choice’, and the role of patient choice has been understood as being entwined with the market reforms of the NHS that commenced under the Thatcher government [95]. It is, however, debatable whether these new policies command similar universal support. It is the development of these patient choice policies from 1989 onwards, under Thatcher’s Conservative government, which set in motion market reforms in the

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NHS. In the White Paper, Working for Patients [10], increases in choice for the patient and the provision of ‘greater choice [in the] services available’ were very limited. Apart from having a ‘real choice between GPs’, the only option patients had was to buy their healthcare outside the NHS, which took some of the pressure off the service [42, p. 315]. All the same, choice, as an instrumental aim by policymakers to achieve the values of the NHS, has been the legacy of the White Paper. This is despite the fact that, when New Labour won the general election in 1997, there was initially no mention of choice at all [42, p. 317]. New Labour’s terminology, rather than featuring choice, competition and the market [49, p. 195; 1, p. 271], stressed the values of equity and quality [11]. However, in 2000, with the introduction of the NHS Plan [12], patient choice also became an important theme for New Labour. Patients’ choices were to include the right to choose a GP based on information to be made available about GP practices [12], more options in accessing the NHS, with the choice to email or phone their GP practices for advice and to book appointments online [12, para. 1. 11], and the choice of hospital and the dates and times of hospital appointments [12, para. 10.20]. Although it rejected the emphasis on competition within the internal market and abolished GP fund holding, New Labour now accepted some quasi-market principles by retaining the purchaser/provider split in its creation of primary care trusts (PCTs) as the main purchasers of healthcare services [49, p. 209]. Rather than linking choice with market competition, New Labour claimed that patient choice enhanced equity and would lead to greater equality in the health service as well as a fairer distribution in the access to health services [1, p. 271]. Successive Department of Health Papers [14, 16, 18] confirmed New Labour’s vision of patient choice and equity by ensuring the free choice of any hospital for treatment, including private hospitals [16, paras 6–8], and by providing more choice in treatment options for patients with long-term conditions [19, para. 14]. Patient choice was again confirmed in the NHS Constitution of 2009 [20]. Market elements were, however, also present in New Labour’s policies, not only with respect to choice for consumers, but also in that money was to follow the patient; there was to be competition between a plurality of diverse providers and there was to be practicebased commissioning [49, p. 219]. In Equity and Excellence: Liberating the NHS [22], the White Paper published in 2010, the new coalition government in turn emphasised patient choice by enabling choice ‘through an information revolution’ [22, para. 4]. Specifically, patients were to have the choice of any qualified provider, the choice of a consultant-led team, the choice of GP practice, the choice in care for long-term conditions and the choice of treatment; to make these choices about their care, patients were to have access to the information they desired [22, para. 2.20]. Patient choice also became enshrined in the new edition of the NHS Constitution for England [27] and in the Health and Social Care Act 2012 [43]. The language of the coalition government is, however, more market-focused, with an increasing role for private sector providers in community, as well as hospital, care [43, s. 75; 2]; this shadows the policies that were in place at the time when choice first reared its head [24]. Recent political discourse, therefore, demonstrates enthusiasm for choice in the NHS. At the same time, patient choice is challenged as being in conflict with the

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traditional values of the NHS; it is critiqued as inducing inequality and as standing as a proxy for the policies of marketisation and privatisation, such as efficiency and competition [8, p. 250]. Pollock, for example, claims that the new ‘NHS plc’ has abandoned the founding principles of the NHS, such as comprehensiveness, universality and equity [77, pp. 78–79]. Likewise, Fotaki [32] and other authors [1, 73] suggest that the expansion of the market and the marketisation policies of choice, competition and efficiency are perceived as having a detrimental effect on the traditional values of the NHS. Yet other writers [29, 50, 52] argue that, despite these new policies, the English NHS is performing well when measured against its core values. In their view, the continuity between the old and the new NHS has been preserved [50, p. 19] as policy-makers of different political persuasions have endorsed the founding values of the NHS [17, 22, 23; 72, p. 576]. With these opposing views as its background, this paper disputes Whiteman’s assertion of the fallacy of choice in law and in NHS policy [107] and specifically considers the functions of patient treatment choice at the various levels of NHS healthcare.

Treatment Choice: Macro-Level Policy At the macro-level, choice of treatment has become one of the major policies for governments in recent years. This choice, for the patient, is linked with the notion of personalised healthcare in which patients receive more tailored services [67, p. 205; 17, 22, 23]. This can, for example, be illustrated by the introduction in the NHS of the concept of personal health budgets under New Labour in 2009 [21]. Personal health budgets have continued to receive support by the current coalition government [23, 28, 71]. Personalisation The concept of personalised healthcare was explained in Lord Darzi’s report, High Quality Care for All, which was written under New Labour [17]. The report states that people ‘expect not just services that are there when they need them, and treat them how they want them to, but that they can influence and shape for themselves’ [17, p. 26], and that they ‘want care that is personal to them’ [17, p. 33]; the report concludes that ‘a health service without freedom of choice is not personalised’ [17, p. 38]. Liberating the NHS: Greater Choice and Control, the White Paper of the current coalition government, similarly states that personalised care planning is ‘about engaging people in making choices about how they want to manage their care’; ‘about setting personal goals and receiving appropriate support to achieve those goals as equal partners with healthcare professionals’; and ‘about treating a person as a whole, recognising that there are other issues in addition to medical needs that can impact on a person’s total health and wellbeing’ [23, p. 17]. The personal health budgets, in turn, aimed to help ‘people to get the services they need to achieve their health outcomes, by letting them take as much control over how money is spent on their care as is appropriate for them’ [21, p. 9]. Foreshadowed in High Quality Care for All, which was written under New Labour,

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personal health budgets, which are voluntary, were intended for patients with fairly stable and predictable conditions, such as patients with long-term chronic conditions [17, p. 42]. According to Personal Health Budgets: First Steps, personal health budgets are designed to allow patients to ‘buy’ packages of services in addition to the comprehensive primary medical services that are provided by GPs [21, p. 28]. Likewise, the current coalition government’s White Paper, Liberating the NHS: Greater Choice and Control, speaks of shared decision making as being central to the development of effective personalised care plans for people with long-term conditions; choice is characterised as playing an ‘important role in promoting equality and reducing inequalities’, but also in encouraging ‘healthcare providers to tailor their services to what people want and to improve their quality and efficiency’ [23, p. 4]. Personal health budgets play a big part in choice and in personalised care planning, and they are ‘an extension of personalised care planning’ that provides people with ‘more control over the money that is spent on their care’ [22, p. 55]. The justification for these treatment choice policies by both the New Labour and the coalition governments has been based on the original NHS settlement. Thus, Lord Darzi’s report stated that ‘providing personalised care should also help us to reduce health inequalities, as the households with the lowest incomes are most likely to contain a member with a long-term condition’ [17, p. 28; 19]. Likewise, New Labour’s personal health budget scheme expressly underlined that the key principles of the NHS, specifically, ‘equality and tackling inequalities’, are to be upheld [21, p. 28]. While the coalition government also explained these policies as linked to the value of equity, choice and the personalisation of healthcare cannot be separated from the issue of cost management in the NHS [22]. Efficiency, which is mentioned twenty-five times in the White Paper, Equity and Excellence, and costs, which are mentioned thirty times, are a central theme. Efficiency, in particular, is a major driver: Decision making by patients about their own health and care, and patient choice, are amongst the changes that are intended to bring about a ‘revolution in NHS efficiency’ [22, p. 45], while, at the same time, ‘[the] intention is to secure excellence as well as equity’[22, p. 8]. Clearly, policy-makers utilise equity to make their policies palatable to the public, i.e., to construct a convincing narrative regarding whether or not the value of equity can be satisfied [67]. However, the issue of cost management in the NHS is one of the central political concerns; the question of how the rising costs of the NHS are to be managed is still at the forefront of the political debate [104]. The NHS, which offers choice and personalised healthcare to patients, is a health service in which patients are expected to be more active and more involved in their own care [67]. To this end, choice and personalised care have increasingly been linked with the theme of ‘responsibilisation’, or individuals taking responsibility for their lifestyle choices in relation to health. Affording choice to patients, therefore, causes them to be unwitting tools in political manoeuvres for cost containment [104]. The shift towards patients taking more control over the management of their health and their healthcare reduces their dependence on the NHS; this has the potential benefit of reducing the costs of publicly funded healthcare [104, p. 320], while at the same time, deepening the commitment to the value of solidarity [67, p. 213].

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Responsibilisation High Quality Care for All speaks of patients as being enabled to self-care [17, p. 40], patients who are empowered by choice as being more likely to take responsibility [17, p. 33], and people as being encouraged to take responsibility for their own health throughout their lives [17, p. 39]. Similarly, in Personal Health Budgets: First Steps, references are made to ‘the individual’s own responsibility and accountability’ [21, p. 29], to people having independence and choice, but also responsibility [21, p. 38], to people exercising their choices around support for self-care [21, p. 30], a culture shift in care planning that starts from the assumption of self-care and control [21, p. 29], and support for self-care and self-management [21, p. 11]. The current government’s White Paper, Equity and Excellence: Liberating the NHS, and the consultation paper, Liberating the NHS: Greater Choice and Control, continue this theme of responsibilisation. Equity and Excellence: Liberating the NHS suggests that patients, in return for greater choice and control, should accept responsibility for the choices they make [22, p. 16] and the need to increase self-care [22, p. 46]. Liberating the NHS: Greater Choice and Control describes responsibilisation as patients taking more responsibility for their health and treatment choices [23, p. 23] and building ownership of, and a shared responsibility for, managing their conditions, especially when lifestyle changes may be needed [23, p. 4]. It also suggests that people who are living with long-term conditions should exercise choice with regard to the self-care support they receive, so that they can manage their conditions better and take more control over their health and wellbeing [23, p. 4]. Patients are therefore positioned, not only as conscious choosers of possible treatments, but also as choosers of their lifestyles, and they must therefore take greater responsibility for making healthy choices [42, p. 322]. This emphasis on the individual to assume responsibility for the management of her own health and healthcare and to make responsible choices is also encapsulated in the NHS Constitution: ‘You should recognise that you can make a significant contribution to your own, and your family’s good health and well-being and take some personal responsibility for it’ [27, p. 2]. Requiring patients to become more active and to take responsibility for their health and to reduce acute episodes and hospital admissions for patients with longterm chronic conditions, rather than being resource intensive, might lead to resource savings. In linking responsibilisation to the traditional values of the NHS, it is possible for policy-makers to interpret responsibilisation as a commitment to the value of solidarity by lessening the cost of publicly funded healthcare. These macro-level policy arguments, however, fail to take into account that, in practice, healthcare decisions are made at the micro-level, between patients and doctors, and at the meso-level, between patients and Clinical Commissioning Groups (CCGs).

Treatment Choice at the Micro-Level: The Common Law Turning to patient treatment choice at the micro-level, in most cases, there is no conflict between doctor and patient and the patient will receive her preferred

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treatment. In a less common situation, a conflict exists between a doctor and a patient, when the doctor deems the patient’s desired choice of treatment inappropriate or offers a range of treatments that do not include the patient’s preferred option. When a conflict arises, and the patient, relying on the political, macro-level discourse of NHS choice and her right to choose, rejects the treatment or treatments offered by the doctor and demands her preferred choice, medical law becomes involved, and associated with this involvement is a concept that is as open to interpretation as the rhetoric of policy-makers: the concept of patient autonomy. The rhetoric of autonomy that is employed by the courts in cases in which the patient chooses to refuse or to demand a specific treatment is, in many cases, of little benefit to the patient. In treatment refusal cases, which are conceptually based on the tort of battery and the lack of consent by the patient to bodily interference, the judicial conception of autonomy has tended towards a liberal interpretation in which it confers an absolute right to reject treatment. However, even in refusal cases, this rights discourse is not unlimited, but is constrained by a judicial determination of a patient’s deemed lack of capacity and inability to refuse consent [103, p. 82; 55, p. 211]. The language of autonomy and rights has been transferred to claims for a specific treatment based on the common law [79] and as an infringement of the right to respect for one’s private and family life under Article 8 of the European Convention on Human Rights (ECHR) [45]. The decisions in cases such as Burke [79, 80] and Glass [41] lead, however, to the conclusion that the judicial interpretation of patient choice is in conflict with the choice rhetoric of policy-makers at the macro-level and that patients cannot rely on the concept of autonomy, in its liberal sense, to justify a claim for a specific treatment. Although human rights law could be ‘a powerful tool in controlling medical power’, it would not be difficult to conclude that the ECHR, as interpreted by English courts, may be quite friendly to paternalistic medicine [65, p. 10]. English courts have been reluctant to make major changes, stressing the need for a restrained judicial role [103, p. 114; 65, p. 10]. Although Article 8 includes a right to autonomy, in its liberal sense, Maclean [53, p. 793] argues that judicial concern regarding clinical integrity (and also, resource allocation) underlies the caution of the courts in interpreting human rights provisions. The rights under the HRA 1998 are interpreted ‘to ensure that they are compatible with the common law rather than by adapting the common law to concord with those rights’ [80, para. 39; 53, p. 793]. Thus, Veitch [103, p. 122] concludes that deploying human rights to defend common law rules and principles necessarily diminishes the ability of the patient to use the human rights discourse as a means to criticise the content of the law. The rejection of a more proactive approach by the judiciary in favour of patients [103, p. 126], and the reassertion of a limited judicial function that was witnessed in the Court of Appeal in Burke, will leave treatment decisions that are litigated in the courts firmly in the hands of doctors. Patients who are unable to obtain redress when they are refused their choice of treatment by a doctor may try to seek redress in the court under the law of negligence for a medical failure to disclose treatment options. After all, information disclosure is recognised by the NHS Constitution as a right [27, p. 2]. The question is, however, whether tort law recognises the right of the patient to the medical

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disclosure of treatment information, which is often referred to as the doctrine of informed consent, as being covered by the tort of trespass or battery and the tort of negligence [89, pp. 104–105]. The definitional limitations of the tort of trespass, and the limitations of the tort of negligence regarding patients’ interests in information about treatment options and the attendant benefits and risks, point to a lack of concern with patients’ right to self-determination. Under the law of trespass [7; 6, p. 172], a patient has a right to a minimum of information that is necessary for real consent, whereas the requirement of more extensive information disclosure is encompassed by the law of negligence, which covers the disclosure of available treatment options [75, 99, 102]. However, the law of negligence, rather than being defined in terms of patients’ rights, is defined in terms of doctors’ duties [7; 101, p. 139]; any remaining illusion of patients’ informational rights is further destroyed in that the adequacy of the information provided is assessed in accordance with the professional standard that is underpinned by the Bolam test [5] or some modified version of the Bolam test [75]. Of course, the information to be disclosed concerns not only the benefits and risks of a treatment, but also alternative treatment options and their attendant benefits and risks. This question has, however, only occasionally been considered by English courts and little academic commentary has surfaced pertaining to this question [cf. 57, p. 94; 101, p. 148; 55, p. 203]. This is despite the fact that ‘knowledge of the alternatives may be as significant as knowledge of risks, since a patient may need information about alternative treatments, including the option of non-treatment, so as to compare the risks and benefits of those options with those of the recommended treatment’[57, p. 194]. Skegg [101, p. 148] argues that the reason for the negligible emphasis that is placed on the disclosure of alternatives by English case law and academic discussion is the greater emphasis that is placed on consent and informed consent, rather than on patient choice. The reason may also be the earlier strict application of the prudent doctor test to the disclosure duty. As Maclean points out: ‘[W]hat this means is that, if the treatment is not something that the professional would recommend, and it is reasonable under the Bolam test to take this stance, then there may be no duty to disclose the treatment even if another doctor would have recommended it’ [55, p. 203]. The only two English cases in which the duty to disclose alternatives were directly on point are Sem [97] and Birch [4]. In the former case, liability was admitted, so the case primarily turned on the issue of causation, whereas the latter case concerned the duty to disclose alternative diagnostic methods, rather than alternative treatments. Although the patient succeeded in Birch, because of the definitional limitations of both torts regarding patients’ rights to information and the additional rigorous application of the causation principles in the tort of negligence, patients have rarely been successful in informed consent claims [48, p. 123; 90, 91].

The Destabilising Effects of Patient (Treatment) Choice Claims in Common Law Micro-level patient treatment choice may thus appear to be a fallacy, with litigation between patients and doctors that involve claims to a specific treatment rarely

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favouring the patient. However, tort litigation does not simply operate as a mechanism of dispute resolution [93, p. 1057]. The precedential dimensions of common law adjudication extend beyond the parties to the action; they also shape the backdrop of the general rules that regulate social interaction [93, p. 1057]. Thus, in areas such as tort law, as Sabel and Simon [93, p. 1057] argue, the common law has a tendency ‘to destabilise congealed social practices’. In the healthcare arena, private law litigation regarding a patient’s right to demand a specific treatment similarly has potentially destabilising effects on healthcare regulation and practices. These effects extend to the guidance provided by the regulatory body of the medical profession, the General Medical Council (GMC). This guidance has undergone frequent revisions and, despite the outcome of the decision in Burke [80], has generally been a step ahead of the common law requirements regarding patient treatment choice [64, p. 106; 48, p. 130; 47, pp. 212–214]. Not only can professional guidance be more specific, but doctors are also more likely to be influenced by professional guidance than by case law that has emerged from the courts [48, p. 106; 59, p. 95]. Doctors, rather than looking to the law, will look to the GMC for guidance on managing patients’ expectations regarding their choice of treatment. In turn, the GMC’s role as the regulator of the medical profession includes the power to advise its members on standards of professional performance and medical ethics [60, s. 35]. Although it is not legally binding, GMC guidance functions as a benchmark in considering doctors’ fitness to practise and as a basis for the appraisal of NHS doctors [60, part IIIA; 63, pp. 5–6]. In this light, in response to the destabilising effects of common law litigation, the GMC has encouraged a model of patient-centred care that prioritises patients’ wishes concerning their treatment over and above what the common law demands. Patients and Doctors Making Decisions Together [38], the guidance on consent that was published after the decision in Burke, appears to restrict the patient’s role in treatment decision making, when there is conflict with the doctor, to the role that was endorsed by the Court of Appeal in Burke [80, paras. 50–51], namely, to that of having veto power only. Thus, if patients ask for treatments that doctors believe would not be of overall benefit to them, the doctors should discuss the issues and explore the reason for the patient’s requests, but doctors are not required to provide the treatment. A doctor should explain any other options that are available, including the option to seek a second opinion [38, para. 5d]. The guidance, a revision of Seeking Patients’ Consent [36], seems clear in its interpretation of the Court of Appeal’s judgement in Burke: For the purposes of this guidance, the key point is the Court of Appeal’s opinion that doctors are under no legal or ethical obligation to agree to the patient’s request for treatment if they consider the treatment is not in the patient’s best interests [36, para. 39]. Likewise, the GMC’s Treatment and Care Towards the End of Life [39], which replaced the 2002 guidance, Withholding and Withdrawing Life-Prolonging Treatment [37], which was the subject matter of Burke, similarly repeats that the doctor does not have to provide the treatment requested by the patient if he considers the treatment clinically inappropriate [39, para. 14d]. The endorsement of

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the Court of Appeal’s judgement in Burke leaves the GMC open to a charge of endorsing medical paternalism, as it does not appear to change the legal position regarding treatment requests. Although it is a reaffirmation of the limits to patients’ rights, the GMC guidance does place emphasis on the decision-making process [56, p. 127]. Thus, the emphasis in Consent: Patients and Doctors Making Decisions Together is on joint decision making [38]. Although much of the guidance involves the provision of information, the principles stated at the beginning of the guidance require doctors to listen to patients and respect their views and to discuss with patients what their diagnosis, prognosis, treatment and care involves [38, paras. 2a–2b; 64, p. 106]. The key principle in Part 1 of the guidance is partnership, which is emphasised in Part 2 by the reference to the exchange of information between doctor and patient as central to good decision making [64, p. 106; 47, p. 213]. As Miola stresses, the guidance and the requirement to engage with the patient generally goes beyond what English law demands of doctors [64, p. 106]. It also goes further than the earlier Seeking Patients’ Consent guidance, which placed greater reliance on the patient’s trust in the achievement of a successful doctor-patient relationship [36, p. 1; 64, p. 106]. Even if the patient’s rights do not extend to being able to demand a specific treatment, the current guidance places a greater onus on the doctor in the decision-making process, in that it focuses on whether the doctor has engaged the patient in a partnership approach to decision making. Thus: ‘[W]hatever the context in which medical decisions are made, you must work in partnership with your patients to ensure good care. In doing so, you must … respect patients’ decisions’ [38, para. 2e]. Similarly, Treatment and Care Towards the End of Life places considerable weight on the involvement of patients and their families and caregivers in treatment decisions that may arise at the end of life, which were the very issues that were addressed in Burke [39]. While the guidance reiterates its interpretation of the legal position that a doctor need not provide ‘clinically inappropriate’ treatment to the patient [39, para. 14d], the guidance, overall, is more nuanced, giving prominence to the decision-making process and to joint discussions between the doctor and patient and the patient’s family and caregivers. The most recent Good Medical Practice [40] similarly stresses that the duties of a doctor are: to listen to and respond to patients’ concerns and preferences, to work in partnership with patients, to respect patients’ right to reach decisions with the doctor about their treatment and care and to support patients in caring for themselves to improve and maintain their health. In the context of acute or life-threatening situations in which patients are reliant on the expertise of the doctor who is providing the therapy options, it makes sense for patients to have only veto power in healthcare decisions. In situations in which patients can claim superior knowledge and expertise, such as patients with long-term chronic illnesses, this makes much less sense, as the patient’s right to reach decisions with the doctor is more important. As Holm suggests, the ‘expert patient’ movement has shown that patients with chronic diseases can become experts in the management of their own particular illnesses and can be key decision-makers in the treatment process [44, p. 206]. These patients often know more about the corner of healthcare that is relevant to

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them than the healthcare professionals, and they can acquire the knowledge and skills to make decisions independently [44, p. 206; 105, p. 13]. The doctor will still know more about medicine than the patient, but in a concrete situation, this is often irrelevant. It is the patient who is the most expert regarding her own condition in a specific context, and it is the patient who manages her illness on a daily basis and can make the general claim that the decision is about her life [44, p. 207]. In Teff’s [102, p. 123] words, non-medical dimensions of ill health can be vital to an assessment of what constitutes good medical treatment in a particular case, and only the patient can be fully aware of the impact that an illness is having on her life. Thus, the optimum choice of treatment is not necessarily the one that is deemed by the doctor to be the most appropriate or in the patient’s best interests. The Good Medical Practice guidance takes cognisance of this and of the large patient group that is affected by long-term chronic conditions, which was estimated by the Department of Health in 2000 to be 17.5 million people in the United Kingdom [13, p. 15]. Clearly, in most cases, patients and their doctors will agree on treatment. As Biggs [3, p. 238] points out, the vast majority of medical decisions are reached by mutual agreement between a doctor and a patient, even when there is initial disagreement. Informed Choice Informed consent litigation, which, as mentioned above, is rarely successful for the patient because of the definitional limitations of the torts of negligence and trespass [48, p. 123], has similarly had a considerable destabilising effect on healthcare practices [93, p. 1016]. This is evidenced by the frequent revisions to the professional guidance with regard to this issue by the GMC [34–36, 38]. GMC guidance expects a much higher standard of information disclosure from doctors than does tort law, and rather than being guided by the minimal requirements of the law, doctors look to the standards set by the GMC regarding the exchange of information with their patients [46, p. 286; 48, p. 133; 63, pp. 79–82]. Litigation in the area of informed consent has also had an effect on medical practice and regulation. Medical informed consent and the subsequent adjudication of litigation, although of little benefit to most of the patients who are immediately involved, has provided a stimulus to the debate about the nature of the doctorpatient relationship generally [48, p. 130]. Doctors have become more sensitive to the risk of litigation and now pay increased attention to the question of obtaining patients’ consent and ensuring that they are adequately informed [48, p. 124]. As Jones pointed out over a decade ago, in the UK, leaders in the medical profession have begun to respond to demands for greater openness and information disclosure through the issuing of detailed guidance by the GMC [48, p. 130]. Although its guidance is not legally enforceable, as Jackson states, ‘doctors wanting to know what they should disclose to [a] patient will usually consult professional guidance, rather than the law reports and so in practice the inadequacies of tort law may have little practical impact upon the provision of information to patients’ [46, p. 286]. As argued, professional guidance goes beyond the common law regarding the

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information that a doctor must provide to a patient [63, p. 83; 48, pp. 130–133; 54, p. 412; 59, pp. 95–96]. The first specific guidance on consent, Seeking Patients’ Consent [36], published by the GMC in 1998, placed much more onerous duties on doctors regarding the provision of information than those required by the common law. Before this specific guidance, the issue of ‘informed consent’ had not been spelt out in any great detail by the GMC. Rather, consent had only been dealt with in the form of general bullet points as generic guidance in the GMC’s core guidance, Good Medical Practice [33, p. 494]. Seeking Patients’ Consent dealt with detailed issues of informed consent, including the disclosure of treatment options and the need to explain, for each option, the likely benefits and the probabilities of success [36, para. 5]. However, more importantly, it emphasised the importance of effective communication and open, helpful dialogue to strengthen the doctor/patient relationship and to provide a framework within which the doctor can respond effectively to the individual needs of the patient [36, para. 3]. The doctor must do her best to find out about patients’ individual needs and priorities, including their ‘beliefs, culture, occupation or other factors which may have a bearing on the information they need to reach a decision’ [36, para. 6]. Doctors should not make assumptions about patients’ views. They should also provide patients with appropriate information, including explanations of any risk to which patients may attach particular significance [36, para. 6]. In addition, and contrary to the common law position, the guidance also spoke of the patient’s right to make informed decisions as a right protected in law [36, para. 2]. Tort law does not provide the patient with the right to be given sufficient information, but restricts the duty of the doctor, under the law of negligence, to provide information according to a standard that lies somewhere between that of the reasonable doctor and the reasonable patient [75] and further requires proof of causation to establish liability. The 1998 guidance, on the other hand, described a disclosure standard that comes close to that of the subjective patient and imposed a duty on doctors to tailor their disclosures to their patients’ priorities [47, p. 190]. While a subjective test may be impractical as a test to ground legal liability in negligence [47, p. 190], increased informed consent litigation since the early 1980s has clearly motivated the GMC to adopt this more stringent test in its guidance, whether or not its authors erroneously believed that case law backs the patient’s right to information [48, p. 130]. The current guidance on consent, Consent: Patients and Doctors Making Decisions Together [38], published in 2008, is even more detailed regarding the exchange of information between doctor and patient than the previous guidance. It emphasises that the approach to discussion about treatment will vary between patients, with individual patients wanting more or less information than others [38, para. 4]. It stresses that discussions about treatment must include information about treatment options and their potential benefits, risks and burdens and the likelihood of success [38, para. 9]. Like the 1998 guidance, the current guidance also adopts a higher disclosure standard than the common law and adopts an approach that approximates a subjective standard of disclosure. Thus, doctors should tailor the exchange of information with their patients according to their patients’ needs and

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wishes, their level of knowledge about, and understanding of, their condition, prognosis and the treatment options, the nature of their condition and the complexity of treatment [38, para. 7]. Doctors should not make assumptions about the information that patients might want or need and the clinical or other factors that patients might consider significant [38, para. 8]. Doctors should do their best to understand their patients’ views and preferences about any proposed investigation or treatment, and the adverse outcomes about which patients are most concerned [38, para. 31]. While the 1998 guidance emphasised the link between the provision of information with patient autonomy and patient rights and viewed them as prerequisites for patient cooperation with treatment, the 2008 guidance emphasises the need for partnership between doctors and patients when making decisions about treatment and care [38, part 1; 64, p. 106]. With its continuing trend towards a disclosure standard that is more respectful of patients’ informational requirements than that required by the common law, and read together with the GMC’s core guidance Good Medical Practice [40], the involvement of the patient in treatment decisions is encouraged. Thus, while tort law may provide little comfort to the uninformed patient, its destabilising effects have led to a change in professional guidance regarding information disclosure that encourages more detailed disclosure by doctors with a disclosure standard that fulfils the requirements of patient autonomy in its liberal sense and leads to some redress in the power imbalance between patient and doctor.

Treatment Choice at the Meso-Level: English Public Law Turning to the meso-level of healthcare, patients are also often frustrated in their claims against a health authority for a specific treatment. Despite the claim of comprehensiveness in the NHS Constitution [27, p. 1], financial constraints require limits to be placed on healthcare so that it will be affordable. The health authorities or CCGs [prior to April 2013, primary care trusts (PCTs)] are entrusted to make resource allocation decisions from their fixed yearly budgets [66, s. 230; 43, s. 223i]. For this purpose, quite a number of treatments are not generally available, either because the CCG has placed them on a list of so-called low-priority treatments [85; 68, p. 307] or, as in the case of novel cancer drugs, they have not been approved or are pending approval by the National Institute for Health and Clinical Excellence (NICE) [30]. However, a patient can make an individual funding request (IFR) to the CCG, supported by her GP, to obtain such a drug or treatment on the basis of her exceptional circumstances and, if her request is refused, she may look to the courts for judicial review of the decision. The role of the court is to oversee the legitimacy, procedural propriety and reasonableness of the decision, rather than to assess the merits of the patient’s claim [9, p. 410]. The lack of success by patients who have claimed a specific low-priority treatment from a health authority would again appear to suggest that patient choice in the NHS is a fallacy. However, this would interpret the function of patient choice too narrowly.

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In reaching its decision in a judicial review case, the court rules on the appropriateness of the criteria that are considered by the CCG in determining a case to be exceptional. The definition of exceptionality and the exceptionality criteria that have emerged from judicial review case law are very general and sometimes ambiguous [30; 58, p. 26], and therefore, they have led to uncertainty for patients, as well as health authorities. Health authorities will be driven by values such as the consistency, fairness and equity of decision making, and most CCGs will have general decision-frameworks to this effect [83; para. 8; 82, para. 3]. They will attempt to reconcile the tensions between the needs of the many and the claims of the individual, while also being concerned with fidelity to the law [76, i247]. In its decision regarding the funding of any low-priority treatment on an exceptional case basis, the factors a CCG will take into account will necessarily depend on the individual situation of the patient. According to the case law, only clinical factors or social factors with clinical implications need to be assessed by the CCG in the determination of a patient’s exceptionality [81]. Still, many of the clinical factors that emerge from case law and that are appropriate to judge a case as exceptional [30] are, because of their generality, difficult to interpret. For example, a health authority needs to consider factors such as whether the patient demonstrates an overriding clinical need [85, 86], whether the patient has exhausted conventional treatments [84], whether she has previously benefited from the particular therapy [84, para. 20; cf. 82], and whether she is likely to benefit from treatment more than others [78, para. 54; cf. 82, para. 39]. To take these factors in turn: Does clinical need depend on the severity of the condition or on the length of the patient’s expected survival? Is the exhaustion of conventional treatments a relevant factor for patients who seek low-priority treatments or only for patients who require novel cancer drugs? Does previous benefit from a treatment include any prolongation of survival by a cancer patient with a very short life expectancy? Can the likelihood that a patient will benefit ever be defined objectively? Because of the considerable variation in the definition of exceptionality policies amongst the then PCTs, many tried to surmount the problem by adopting the formulation publicised by the NHS Confederation [58, p. 25; 70]. With this formulation, which in turn, was based on case law, the NHS Confederation admitted that ‘the law is not yet clear as to the exact nature’ of exceptionality and that the very nature of exceptionality makes it ‘impossible to anticipate every exceptional case’ [69]. The ambiguity of the criteria to judge a claim as exceptional, along with the support for the individual’s choice, inevitably encourages increased litigation by patients and puts pressure on the limited resources of the health authorities.

The Destabilising Effects of Patient (Treatment) Choice Claims in Public Law Viewing patient choice in the light of patient rights at the meso-level, therefore, does not make sense of the overall picture. Choice ought to be seen as having specific functions in healthcare and it plays a role as a destabilising mechanism at all levels of healthcare. Thus, the threat of or an actual judicial review challenge by a

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patient whose treatment choice has been refused by a health authority disrupts the status quo at the meso-level. In order to reduce the threat of judicial review, CCGs must be able to explain coherently why they have refused an application. Avoiding litigation and its collateral costs may be unsettling for CCGs in light of the rather ambiguous criteria that have developed by the courts to judge exceptionality. However, from the point of view of the health authority, judicial review litigation that turns on the definition of ambiguous exceptionality criteria involves considerable expenditures in terms of finances and staff time devoted to such cases [87, p. 63; 30, p. 9]. The threat of judicial review may therefore encourage authorities to do what they can to avoid the risk of litigation [58, p. 25; 30, p. 25]. CCGs, like the previous PCTs, may therefore prefer to approve a large percentage of IFRs to avoid being challenged in the courts [58, p. 25; 30, p. 25]. The threat of judicial review challenges may lead CCGs to arrive at new policies and budgeting priorities. They therefore have a destabilising impact on a health authority’s efforts to resolve the tension between individual demands and the needs of the local population in a consistent, fair and equitable manner. While a judicial review challenge in which the case does not reach judgement carries no legal weight, the adjudication of judicial review litigation will have an even greater impact on health authorities. A judgement provides an authoritative decision in a particular case, has a significant impact on the parties involved and creates legal precedent. Thus, in the context of judicial review challenges of local authority decisions by individual claimants, Platt et al. [76, i252] found that local authorities were often willing to reconsider their decisions and settle challenges early in the judicial review process to avoid having to respond to the outcome of the litigation. However, even after a case has been adjudicated, judicial pronouncements on exceptionality criteria do not seem to provide clarity. Authorities that invest resources in response to the perceived interpretation in one decision may find that other interpretations or decisions lead to a different conclusion [76, p. i251; 30, pp. 26–27]. In addition, responding to a judgement may be costly and unsettling and it may entail revisiting policies or budgeting priorities that have been carefully established [76, i251]. Even if there is no ambiguity, judgements are in the public domain and are likely to encourage more potential claims by individual patients who want to access low-priority treatments. The destabilising effects of judicial review litigation, however, may have even more far-reaching effects, effects beyond the immediate parties to the case, health authorities generally and potential future individual litigants. Thus, according to Sabel and Simon [93, p. 1016], public law litigation destabilises the status quo generally and leads to public engagement, deliberation and negotiation, with consequences not only for the defendant institution, but also, for other institutions and practices. The need for transparency by the health authority, the need to account for its rationing decisions in public, and the media involvement in such cases, opens the system to broader interests and voices [30, p. 14 fn. 56]. For Sheldrick [98, pp. 155–156], judicial review litigation is a vehicle by which individuals and groups can bring pressure to bear on state institutions. The ‘institutional leverage’ provided by the courts may help ‘in securing rights to participate in decision making or

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altering/expanding the parameters governing the implementation of a policy’ [98, p. 156]. This meso-level destabilisation may in turn have a bottom-up effect on government policies regarding personalised healthcare and patient choice.

Destabilisation of Treatment Choice at the Macro-Level At the same time, at the macro-level, the policies of treatment choice, personalisation and responsibilisation ought to be viewed as allowing interpretations in terms of their functionality. Thus policy-makers may be using these policies as strategies of destabilisation to stir up the entrenched institutional architecture of the NHS and to encourage reform [8, p. 249; 94, p. 1]. These destabilisation strategies will be motivated, to a large extent, by the need for fiscal austerity [94, p. 8; 88]. However, the motivation is likely to be more complex and may include other intentions, such as quality improvement, greater efficiency and responsiveness, and administrative modernisation of the NHS [94, pp. 7–9]. They may, of course, also have a populist motivation that is based on increasing consumer satisfaction for reasons of electoral politics [94, pp. 7–9]. It is suggested that patients who demand choice may be the unwitting tools of these governmental strategies. Choice as ‘a proxy for instability as a dynamic of system reform’ is the explanation for patient treatment choice and personalisation that is presented in New Labour’s policy documents [8, p. 250]. From a textual analysis of these documents, Needham [67, p. 210], for example, concludes that personalisation is a narrative of disruption in response to organisational failure and is depicted in many texts as ‘a ‘‘radical agenda’’ which will shake up the health service’. As Needham states, a destabilisation agenda can be detected in the development of the personal health budgets, which are, in her view, a move away from the concept of risk-pooling or the founding value of universality or solidarity [67, p. 210]. In addition, she identifies that New Labour had a further ‘clear agenda to encourage destabilisation’ by the encouragement of a diverse range of providers that was likely to lead to volatility caused by an ‘exit’ by commissioners and also patients [67, p. 212]. The current government’s patient treatment choice policies can likewise be regarded as a strategy of destabilisation, albeit with a pronounced link to marketisation and privatisation mechanisms. The personal health budgets, as part of the agenda for the personalisation of healthcare, are clearly a major system-level reform that affects the use of a wide range of services and support that are provided by the NHS [31, p. 124]. The Health and Social Care Act 2012 enshrines the most extensive reorganisation of the structure of the English NHS to date by extending the primary care provision to include ‘any qualified provider’ [25] with the intention of encouraging ‘fair and effective competition … [as] a means to give greater choice and control to patients to access high quality care’ [26]. Any commissioning of services that are currently outside the scope of NHS provision is likely to encourage a reorganisation of the primary care sector and to lead to changed practices within the NHS.

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Conclusions Contrary to Whiteman’s [107] narrow argument in favour of the fallacy of patient choice in the NHS, this paper has suggested that choice carries different meanings in different contexts and that these different meanings are also employed at different levels of the healthcare system. The interpretation of choice that is used at the micro-level is that of choice as a liberal value, whereas, at the meso-level, it could be argued to be that of quasi-consumer choice in a market-mimicking healthcare system. At the micro-level, patient choice is linked with the concept of the right or freedom to choose as a liberal value, which is also circumscribed by the concept of autonomy. The claim for a specific treatment, if based on a liberal understanding of autonomy, would be linked with the right to self-determination, but it has never been interpreted by the courts as an obligation that requires doctors to satisfy such claims. The judicial conception of autonomy, therefore, rarely puts the patient in control. A doctor can legitimately decide that certain treatments are not in the best interests of a patient and need not be made available. It is the doctor who decides whether a treatment is clinically indicated. In the same vein, as regards the right of the patient to be informed about treatment alternatives, English law has little concern for patients’ interests in arriving at an autonomous treatment choice. At the meso-level, when the patient, with the support of her GP, disputes the lack of availability of a ‘low-priority’ treatment from the health authority on exceptionality grounds, the choice involved is not a liberal choice, as a conception of autonomy, but can be interpreted as a choice of a quasi-consumer in a market-mimicking public healthcare system that is constrained by limited resources. The limitation of patient treatment choice in the NHS in this manner might indeed lead to Whiteman’s conclusion that patient choice does not exist and that, at most, patients can express a preference. At the macro-level, the use by policy-makers of patient choice is open to still different interpretations. Patient choice can be viewed as a strategy with specific political objectives, either as a technique to reduce costs in the NHS by linking the personalisation of healthcare with the responsibilisation of the patient, or as a proxy for competition, efficiency and marketisation. It can also be seen as a mechanism by government to encourage the destabilisation of the institutions of the NHS and to encourage reform. It is the theme of destabilisation that links the interpretation of choice at the micro- and meso-levels with the macro-level interpretation as a policy mechanism. At the micro-level, private law litigation or threatened litigation by patients against doctors, while rarely realising the desired choice, has other effects. The common law does not operate solely as a system of dispute resolution with precedential effects; rather, it also has wider potential ramifications. An action at common law is not a self-contained action between the immediate parties; it has the effect of destabilising the status quo with a bottom-up effect on healthcare practices and regulations. Similarly, at the meso-level, actual or threatened judicial review causes uncertainty for health authorities because of the ambiguities of the case law. CCGs may not only concede an IFR, particularly if the treatment costs are not high, simply to avoid the expense of court proceedings, but they may also change their policies

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on patient choice. Government policies on personalised healthcare and marketisation are likely to add pressure in this respect. In addition, the domestic effect of the Patient Mobility Directive [74] on patient choice remains to be seen, as patients may well be able to satisfy their treatment choices domestically from the new CCGs instead of threatening to obtain the treatment across borders. Acknowledgments I would like to thank the two anonymous reviewers for their invaluable suggestions.

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Fallacy or Functionality: Law and Policy of Patient Treatment Choice in the NHS.

It has been claimed that beneath the government rhetoric of patient choice, no real choice exists either in law or in National Health Service (NHS) po...
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