Neither the English courts nor the National Health Service (NHS) have been immune to the modern mantra of patient choice. This article examines whether beneath the rhetoric any form of real choice is endorsed either in law or in NHS policy. I explore the case law on ‘consent’, look at choice within the NHS and highlight the dilemmas that a mismatch of language and practice poses for clinicians. Given the variance in interpretation and lack of consistency for the individual (...) patient I argue for a semantic change that obviates the use of ‘choice’, focussing instead on the options for treatment that are available and accessible, with due acknowledgement of individual patient preferences, without raising unfettered and false expectations. (shrink)

The culture of ‘culture’ in National Health Service policy implementationThe widespread reference to ‘culture’ in UK NHS policy and organisational literature suggests that culture has, in itself, become a cultural phenomenon. This article draws on anthropological thought to explore this trend, and finds it stems from the way that the term ‘culture’ has become analytically empty. Lack of rigour in the way that culture is conceptualised allows it to be used both to suggest an evolved consensus among the (...) workforce, and to validate the imposition of values and beliefs by management. Such manipulation of ‘culture’ is evident in recent NHS policy demanding cultural change to ensure a flexible, empowered and self‐regulating workforce — the type of workforce not only valued by health services, but pivotal to a post‐Fordist economy. The findings from an ethnographic study are drawn upon to consider the relationship between nurses’ cultural practices, corporate culture shaped by NHS policy, and the requirements of the economic domain. It is suggested that a commitment to post‐Fordist priorities of flexibility, empowerment and self‐regulation is not necessarily matched by any shift in the traditional location of power. The article concludes that greater analytical rigour is necessary to challenge the way in which ‘culture’ is manipulated by policy makers. (shrink)

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

The NHS in England is an organisation undergoing substantial change. The passage of the Health and Social Care Act 2012, consolidates and builds on previous health policies and introduces further ‘market-style’ reforms of the NHS. One of the main aspects of these reforms is to encourage private and third sector providers to deliver NHS services. The rationale for this is to foster a more competitive market in healthcare to encourage greater efficiency and innovation. This changing healthcare environment in the English (...) NHS sharpens the need for attention to be paid to the ethical operation of healthcare organisations. All healthcare organisations need to consider the ethical aspects of their operation, whether state or privately run. However, the changes in the type of organisations used to provide healthcare (such as commercial companies) can create new relationships and ethical tensions. This paper will chart the development of organisational ethics as a concern in applied ethics and how it arose in the USA largely owing to changes in the organisation of healthcare financing and provision. It will be argued that an analogous transition is happening in the NHS in England. The paper will conclude with suggestions for the development of organisational ethics programmes to address some of the possible ethical issues raised by this new healthcare environment that incorporates both private and public sector providers. (shrink)

The Varsity Medical Debate, between Oxford and Cambridge Universities, brings together practitioners and the public, professors, pupils and members of the polis, to facilitate discussion about ethics and policy within healthcare. The motion on privatizing the National Health Service (NHS) was specifically chosen to reflect the growing sentiment in the UK where further discourse upon models of healthcare was required. Time and again, the outcome of British elections pivots upon the topic of financial sustainability of the NHS. Having recently (...) celebrated its sixtieth anniversary, the NHS has become heavily politicized in recent months, especially in the aftermath of the devastating global recession. (shrink)

Values-based recruitment is used in England to select healthcare staff, trainees and students on the basis that their values align with those stated in the Constitution of the UK National Health Service. However, it is unclear whether the extensive body of existing literature within the field of moral philosophy was taken into account when developing these values. Although most values have a long historical tradition, a tendency to assume that they have just been invented, and to approach them uncritically, exists (...) within the healthcare sector. Reflection is necessary. We are of the opinion that selected virtue ethics writings, which are underpinned by historical literature as well as practical analysis of the healthcare professions, provide a helpful framework for evaluation of the NHS Constitution values, to determine whether gaps exist and improvements can be made. Based on this evaluation, we argue that the definitions of certain NHS Constitution values are ambiguous. In addition to this, we argue that ’integrity' and ’practical wisdom', two important concepts in the virtue ethics literature, are not sufficiently represented within the NHS Constitution values. We believe that the NHS Constitution values could be strengthened by providing clearer definitions, and by integrating ’integrity' and ’practical wisdom'. This will benefit values-based recruitment strategies. Should healthcare policy-makers in other countries wish to develop a similar values-based recruitment framework, we advise that they proceed reflectively, and take previously published virtue ethics literature into consideration. (shrink)

The inaugural southwest medical debate, between Exeter and Plymouth medical schools and respective health services, was held on the 3rd December 2014. Plymouth proposed the motion “This house believes the NHS should be privatised?” In an increasingly political climate, the National Health Service has become a constant topic for discussion in the media. On this occasion, all those debating were involved in the medical profession with roles encompassing clinical medicine, education, ethics, economics and policy. By allowing those with knowledge (...) of the NHS to speak, we hoped to spark novel discussions based on evidence and experience. (shrink)

This article deploys a well-established theoretical model from the accountability literature to the domain of bioethics. Specifically, homeopathy is identified as a controversial industry and the strategic action of advocates to secure moral legitimacy and attract public funding is explored. The Glasgow Homeopathic Hospital is used as the location to examine legitimizing strategies, from gaining legitimacy as a National Health Service hospital in 1948, followed by maintaining and repairing legitimacy in response to government enquires in 2000 and 2010. An analysis (...) of legitimizing strategies leads to the conclusion that advocates have been unsuccessful in maintaining and repairing moral legitimacy for homeopathy, thus threatening continued public funding for this unscientific medical modality. This is an encouraging development towards open and transparent NHS accountability for targeting limited public resources in pursuit of maximizing society's health and well-being. Policy implications and areas for future research are suggested. (shrink)

Migrant nurses form an increasing proportion of the nursing workforce, with the United Kingdom (UK) being the third most popular destination for overseas nurses in the world. The migrant nurse workforce is highly susceptible to policy changes at the macro or professional level of the donor and recipient countries. Freedom of information requests were issued to 19 National Health Service [NHS] Trusts in England to determine their involvement in overseas nurse recruitment activity from 1998 onwards. These indicate a notable (...) shift away from active European Union (EU) recruitment and towards overseas countries particularly the Philippines and India. Reasons given were as follows: diminishing returns from EU sources, high attrition among EU nurses and the introduction of English language tests for EU nurses in July 2016. This led to Trusts revisiting their recruitment strategies by increasing more direct/less resource‐intensive methods and expanding their focus outside of the EU. Trusts frequently utilised private recruitment companies for their recruitment drives, including consulting and influencing the Trusts’ workforce strategies. Policy adjustments have numerous influences on the composition of the overseas nursing workforce. While the NHS continues its efforts in expanding its international nursing workforce, this should not be at the expense of ethical and sustainable recruitment practices, which may be compromised indirectly as a result. (shrink)

Implementing The new NHS and the 1997 NHS (Primary Care) Act will gradually extend cash-limiting into primary health care, especially general practice. UK policy-makers have avoided providing clear, unambivalent direction about how to 'ration' NHS resources. The 'Child B' case became an epitome of public debate about NHS rationing. Among many other decision-making processes which occurred, Cambridge and Huntingdon Health Authority applied an ethical code to this rationing decision. Using new data this paper analyses the rationing criteria NHS managers (...) and clinicians used at local level in the Child B case; and the organisational structures which confronted them with such decisions. Primary Care Groups are likely to confront similar rationing decisions in respect of 'gate-kept' NHS services. However, such rationing processes are not so easily transposed to open-access services such as general practice. NHS rationing decisions, especially in PCGs, will require a much more specific ethical code than hitherto used. (shrink)

In this paper we want to briefly illustrate the ways in which technical, ethical and political judgements of various kinds are interwoven in the processes of healthcare decision-making in the UK. Drawing upon the research for the “Choices in Health Care” project we will borrow the notion of the hidden curriculum from education to illuminate the nature of resource allocation decision processes. In particular we will indicate some of the fundamental but largely hidden political factors in play in these processes (...) and the importance of the inchoate and implicit notion of “NHS values” in shaping UK resource allocation policies. We suggest that these more diffuse, holistic and system level value judgements are both central to understanding priority setting and at the same time difficult to reduce or abstract out into lists of single values/principles. (shrink)

We explore whether a Rawlsian approach might provide a guiding philosophy for the development of a healthcare system, in particular with regard to resolving tensions between different groups within it. We argue that an approach developed from some of Rawls’ principles – using his ‘veil of ignorance’ and both the ‘difference’ and ‘just savings’ principles which it generates – provides a compelling basis for policy making around certain areas of conflict. We ask what policies might be made if those (...) making them did not know if one was patient, doctor, nurse or manager – in this generation or the next. We first offer a brief summary of Rawls’ approach and how we intend to extrapolate from it. We examine how this adapted Rawlsian framework could be applied to specific examples of conflict within healthcare; we demonstrate how this framework can be used to develop a healthcare service which is both sustainable (in its training and treatment of staff, and in encouraging research and innovation) and open (to protect the powers and opportunities of those using the health service). We conclude that while Rawls’ approach has previously been rejected as a means to address specific healthcare decisions, an adapted veil of ignorance can be a useful tool for the consideration of how a just health service should be constructed and sustained. Turning the theoretical into the practical (and combining Rawls’ thought experiment with Scanlonian contractarianism), managers, doctors, patients, carers and nurses could come together and debate conflicting issues behind a hypothetical veil. (shrink)

The aim of this article is to explore the practical complexity of accountability in health care by focusing on a particular crisis affecting one NHS trust in the UK, that of insufficient beds to meet demand. It is presented through the eyes of five middle managers with nursing backgrounds. Although the focus is on their words, their expressions of distress and their awareness of conflict, these lead to a commentary highlighting some of the relationships between theory and practice, policy (...) making and implementation, and, in the final analysis, compulsion and choice. The managers seemed to work within four main patterns of provider accountability: public, professional, pecuniary and personal. These four Ps of accountability created incompatibilities in the accountability process, but the conclusion attempts to draw the threads together to suggest a possible way forward. In order to protect confidentiality, pseudonyms are used for the NHS trust and the interviewees, and some personal details have been disguised. (shrink)

The nature and significance of equity and equality in relation to health and healthcare policy is discussed in the light of a recent article by Culyer. Culyer makes the following claims: the importance of equity in relation to the provision of health care derives from the human need for health in order to flourish; and for the sake of equity, equality of health among the members of particular political jurisdictions should be the aim of health policy. Both these (...) claims are challenged in this paper.The argument put forward is that it is only when needs arise and are met in particular contexts that need and equity are fused. The state and its agents and agencies should distribute what it distributes impartially, whatever it distributes. Whether or not equity applies to the distribution of healthcare services depends on how they are provided and not on their nature as “primary goods”. Contrary to what Culyer suggests, a policy of trying to produce the outcome of health equality would be inequitable. It would not be impartial and it would fail to treat persons as persons ought to be treated. (shrink)

Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such as guidance and deliberative ethics forums, developed primarily to manage issues arising within the clinic.We explore (...) what ethical issues are being experienced by clinical scientists, how they think such issues could be best analysed and managed, and whether their practice might be enhanced by more situated approaches to ethics deliberation and practice such as ethical preparedness. From thematic analysis of cases presented by clinical scientists at a specially convened meeting of the UK Genethics Forum, we derived three main ethical themes: (1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising.We argue that although standardisation is important for promoting shared understandings of good (including ethical) practice, supplementary approaches to enhance and sustain ethical preparedness will be important to help clinical scientists and others in the recently expanded genetic/genomic medicine environment foster quality ethical thinking. (shrink)

In their article, Sahan and colleagues have presented ethical dilemmas faced by clinical scientists working in genomics.1 This is a welcome development since thus far little has been published on the ethical issues faced by clinical scientists in general. In their article, the authors present the three themes which emerged from discussions with clinical scientists in respect to three case studies: ‘(1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty of (...) results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising’.1 One theme which appeared not to emerge is that of ethics education received by clinical scientists during their training, and this is the theme on which this commentary will focus. As noted elsewhere, ‘Clinical Scientists receive some lectures on clinical and research ethics as part of their training, but it amounts to only to a couple of hours of lectures (references omitted)’.2 The usual route to becoming a clinical scientist involves undertaking the 3-year postgraduate Scientist Training Programme (STP), though the ‘equivalence’ route is quite commonly taken by clinical scientists working in …. (shrink)

This article examines recent developments in the regulation of the medical profession in England, with particular reference to doctors working in the National Health Service (NHS). It is argued that the Health Act 1999 and associated government policies are bringing about a shift from a «light touch», self-regulatory paradigm to a government-driven, interventionist approach. It is suggested that the reason for the change is not simply a governmental concern with the quality and nature of care provided by doctors, but more (...) significantly, a concern with the cost of that care. The article offers a critique of the new regime, drawing on the socio-legal literature on regulation. Some aspects of the reforms ignore the need to persuade doctors to comply, and may therefore result in cheating or «creative compliance»; other aspects of the reforms provide doctors with opportunities to «neutralize» their impact. It concludes with an examination of the wider significance of the change in regulatory paradigm, and of the agenda for future research in this field. (shrink)

The 2015 Varsity Medical Ethics debate convened upon the motion: “This house believes nootropic drugs should be available under prescription”. This annual debate between students from the Universities of Oxford and Cambridge, now in its seventh year, provided the starting point for arguments on the subject. The present article brings together and extends many of the arguments put forward during the debate. We explore the current usage of nootropic drugs, their safety and whether it would be beneficial to individuals and (...) society as a whole for them to be available under prescription. The Varsity Medical Debate was first held in 2008 with the aim of allowing students to engage in discussion about ethics and policy within healthcare. The event is held annually and it is hoped that this will allow future leaders to voice a perspective on the arguments behind topics that will feature heavily in future healthcare and science policy. This year the Oxford University Medical Society at the Oxford Union hosted the debate. (shrink)

Background‘The Clinical Ethics Advisory Group’ (CEAG) is the clinical ethics support body for Newcastle upon Tyne Hospitals National Health Service Foundation Trust. A significant change in CEAG’s way of working occurred over the past 5 years as a result of Court decisions, increasing public expectations and an increase in CEAG’s paediatric case flow.PurposeReview historical data: (a) as a useful benchmark to look for the early impact of significant service changes and (b) to seek possible reference (‘sentinel’) cases for use with (...) a posited practical (casuistic) case-based reasoning model.MethodsAudit of the minutes of the first 22 years’ meetings was undertaken by the two chairs of CEAG over that period of time.Results223 matters discussed: 86 Trust policy issues; 117 clinical cases (84 adult (32 urgent), 33 child (8 urgent)); 12 CEAG procedural issues and 8 UK Clinical Ethics Network ‘round robin’ cases. The range of topic areas was wide. A broad range of ethical structures were deployed, principlism predominated. Quality was subjectively assessed by each reviewer, but different methods were used. This proved highly concordant between the two reviewers. 47% (105/223) of discussions were ‘excellent’ (*A4C4–A4C4) and 70% (156.5/223) ‘good’ or better (*A4C4–A3C3). By meeting the criteria of ‘excellent’ and ‘prospective’, 92/223 (41%) of matters were deemed potentially suitable as sentinel cases.ConclusionsThe audit provides a rich vein of information. There is demand for CEAG’s services, workload is becoming more complex. Formal funding for such services seems justified. (shrink)

This paper discusses the current initiatives on error and adverse events within healthcare, with a particular focus on the NHS, within the context of health policy. One of the key features of the paper is the proposal for an emergent taxonomy of the medical error literature, developed from the ideologies and rationales that underpin their approaches. This taxonomy provides details of three categories—empiricists, organisational rationalists and reformers of professional culture—and these act as an organising framework for the exploration of (...) the potential consequences of current policy on errors and adverse events. This discussion highlights the tension between optimising health outcomes for patients and managing the health system as effectively as possible. In particular, the inherent tension between explicit managerial formulations of risk and implicit risk management strategies associated with medical professionalism are considered. (shrink)

Drawing on Sir Ian Kennedy's extensive experience in healthcare law, ethics and public policy-making, this book explores vital issues in the law surrounding healthcare and regulation. The book contains a range of published and unpublished essays and speeches with the addition of notes and commentaries by the author that bring the pieces up to the present day. Those who want to understand developments, from transplants to confidentiality, from COVID-19 to public inquiries to regulation will find a rich seam of (...) rigorous, informed analysis. The author's unique range of experience allows him to share insights on a variety of issues; from the conduct of the disgraced breast surgeon, Ian Paterson, to research at Porton Down, to the economics of innovation in drug development at NICE. His abiding interest in the welfare of children informs his trenchant forensic examination of how children fare in the NHS. Those involved in or with an interest in law, moral philosophy, and public policy will find much food for thought. (shrink)

The UK’s National Institute for Health and Care Excellence is responsible for conducting health technology assessment on behalf of the National Health Service. In seeking to justify its recommendations to the NHS about which technologies to fund, NICE claims to adopt two complementary ethical frameworks, one procedural—accountability for reasonableness —and one substantive—an ‘ethics of opportunity costs’ that rests primarily on the notion of allocative efficiency. This study is the first to empirically examine normative changes to NICE’s approach and to analyse (...) whether these enhance or diminish the fairness of its decision-making, as judged against these frameworks. It finds that increasing formalisation of NICE’s approach and a weakening of the burden of proof laid on technologies undergoing HTA have together undermined its commitment to EOC. This implies a loss of allocative efficiency and a shift in the balance of how the interests of different NHS users are served, in favour of those who benefit directly from NICE’s recommendations. These changes also weaken NICE’s commitment to AfR by diminishing the publicity of its decision-making and by encouraging the adoption of rationales that cannot easily be shown to meet the relevance condition. This signals a need for either substantial reform of NICE’s approach, or more accurate communication of the ethical reasoning on which it is based. The study also highlights the need for further empirical work to explore the impact of these policy changes on NICE’s practice of HTA and to better understand how and why they have come about. (shrink)

Following the recent condemnation of the National Health Service charging regulations by medical colleges and the UK Faculty of Public Health, we demonstrate that through enactment of this policy, the medical profession is betraying its core ethical principles. Through dissection of the policy using Beauchamp and Childress’ framework, a disrespect for autonomy becomes evident in the operationalisation of the charging regulations, just as a disregard for confidentiality was apparent in the data sharing Memorandum of Understanding. Negative consequences of (...) the regulations are documented to highlight their importance for clinical decision makers under the principles of beneficence and non-maleficence. Exploration of the principle of justice illuminates the core differentiation between the border-bound duties of the State and borderless duties of the clinician, exposing a fundamental tension. (shrink)

With the UK government considering a ban on the prescription of homeopathic remedies on the NHS, John Worrall examines the rationale for such a proposal and suggests that the decision is not as simple as it might initially seem.

The National Health Service (NHS) was the first healthcare system globally to declare ambitions to become net carbon zero. To achieve this, a shift away from metered-dose inhalers which contain powerful greenhouse gases is necessary. Many patients can use dry powder inhalers which do not contain greenhouse gases and are equally effective at managing respiratory disease. This paper discusses the ethical issues that arise as the NHS attempts to mitigate climate change. Two ethical issues that pose a barrier to moving (...) away from metered-dose inhalers are considered: patients who decline an inhaler with a smaller carbon footprint and increased cost. I argue that while a patient is not morally justified in refusing a more environmentally sustainable inhaler due to the expected harms, a doctor may still prescribe a metered-dose inhaler if they believe that switching without consent might undermine trust or substantially worsen the patient’s health. Turning to cost, I argue that the imperative to combat climate change means the NHS should accept small increased financial costs for lower carbon inhalers, even though this provides no additional direct benefit for the patient. I then go on to consider the implications of the preceding analysis for policy and practice. I argue for a policy that minimises the impact of inhalers on the climate by advocating for a principle of environmental prescribing and explore decision-making in practice. While the arguments here pertain primarily to inhalers, the discussion has broader implications for debates around healthcare’s responsibility to be environmentally sustainable. (shrink)

NHS Blood and Transplant is responsible for the procurement and allocation of human organs in the United Kingdom. Its main role is to “ensure that organs donated for transplant are matched and allocated to patients in a fair and unbiased way.” NHSBT’s liver allocation policies are underpinned by the National Liver Transplant Standards, a document published by the Department of Health in 2005 to oversee patient care, patient assessment, liver allocation and transplantation, education and training, and research and development. NHSBT (...) has developed its own liver allocation protocols under the powers assigned to it by the Department of Health, which include a “super-urgent” liver allocation policy, a Liver Allocation Sequence, and pediatric candidate liver allocation protocols. (shrink)

In the United Kingdom (and elsewhere), there are moves to extend formal ethical review of research involving human subjects beyond the traditional oversight by NHS local or multi-centre research ethics committees of medical or clinical research, to also encompass all ‘non-clinical’ research involving human subjects. This paper describes and analyses the development and implementation of a model for ethical review within the university sector. At Cardiff University, a devolved or two-tiered system of ethics review has been created in which a (...) top-level university research ethics committee provides policy advice to and oversight of school-based research ethics committees that engage in formal ethics review of research conducted in their respective schools. We describe the system and reflect on the challenges and benefits of implementing such a coordinated and comprehensive university-wide system of ethics review. (shrink)

Since 1994, health policy in the UK has focused explicitly on making the NHS ‘primary care-led’. However, the meaning of primary is contested by different health professions and by policy-makers. This paper charts the major points of debate since the 1960s and suggests that there are limitations as to what general practice can be expected to deliver in respect of primary care.

Current health policy, high‐profile failures and increased media scrutiny have led to a significant focus on patient experience in Britain's National Health Service (NHS). Patient experience data is typically gathered through surveys of satisfaction. The study aimed to support a better understanding of the patient experience and patients' expression of it through consideration of the aspects of the patient experience on NHS wards which are by their nature impossible to capture through patient satisfaction surveys. Existential phenomenology was used to (...) develop an in‐depth exploratory narrative, expressed through the voices of the participants. Data collection involved in‐depth face‐to‐face interviews with 12 purposively sampled participants, with analysis by means of hermeneutics. Though the individuality of each experience was apparent and cannot be overemphasised, common factors emerging from the data included uncertainty and unexpectedness, suffering and finitude, the futility of feedback and bureaucracy and absurdity. Overall, participants demonstrated how their individual personalities and expectations affected their response both to illness or injury and to their hospital admissions, highlighting feelings of vulnerability and voicelessness as a response to hospitalisation. The findings of this study provide useful insight into the patient experience on British hospital wards, and the value of an existential–phenomenological approach is demonstrated. (shrink)

The analysis of data from electronic health records aspires to facilitate healthcare efficiencies and biomedical innovation. There are also ethical, legal and social implications from the handling of sensitive patient information. The paper explores the concerns, expectations and implications of the National Health Service England care.data programme: a national data sharing initiative of linked electronic health records for healthcare and other research purposes. Using Nissenbaum’s contextual integrity of privacy framework through a critical Science and Technology Studies lens, it examines the (...) way technologies and policies are developed to promote sustainability, governance and economic growth as the de facto social values, while reducing privacy to an individualistic preference. The state, acting as a new, central data broker reappropriates public ownership rights and establishes those information flows and transmission principles that facilitate the assetisation of NHS datasets for the knowledge economy. Various actors and processes from other contexts attempt to erode the public healthcare sector and privilege new information recipients. However, such data sharing initiatives in healthcare will be resisted if we continue to focus only on the monetary and scientific values of these datasets and keep ignoring their equally important social and ethical values. (shrink)

When it comes to using patient data from the National Health Service for research, we are often told that it is a matter of trust: we need to trust, we need to build trust, we need to restore trust. Various policy papers and reports articulate and develop these ideas and make very important contributions to public dialogue on the trustworthiness of our research institutions. But these documents and policies are apparently constructed with little sustained reflection on the nature of (...) trust and trustworthiness, and therefore are missing important features that matter for how we manage concerns related to trust. We suggest that what we mean by ‘trust’ and ‘trustworthiness’ matters and should affect the policies and guidance that govern data sharing in the NHS. We offer a number of initial, general reflections on the way in which some of these features might affect our approach to principles, policies and strategies that are related to sharing patient data for research. This paper is the outcome of a ‘public ethics’ coproduction activity which involved members of the public and two academic ethicists. Our task was to consider collectively the accounts of trust developed by philosophers as they applied in the context of the NHS and to coproduce an argumentative position relevant to this context. (shrink)

The rise of managerialism within healthcare systems has been noted globally. This paper uses the findings of a scoping study to investigate the management of poor performance among nurses and midwives in the United Kingdom within this context. The management of poor performance among clinicians in the NHS has been seen as a significant policy problem. There has been a profound shift in the distribution of power between professional and managerial groups in many health systems globally. We examined literature (...) published between 2000 and 10 to explore aspects of poor performance and its management. We used Web of Science, CINAHL, MEDLINE, British Nursing Index, HMIC, Cochrane Library and PubMed. Empirical data are limited but indicate that nurses and midwives are the clinical groups most likely to be suspended and that poor performance is often represented as an individual deficit. A focus on the individual as a source of trouble can serve as a distraction from more complex systematic problems. (shrink)

The article deals with the issue of solidarity in health care,with particular reference to the Italian context. It presents thedifficulties of the Italian NHS and assesses the current proposalto counter the crisis of the Welfare State by giving upinstitutional arrangements, in order to favour the so-called`social private'. Moreover, it addresses the question ofprioritisation and targeting in the context of health care,arguing for the insufficiency of the standard approach of neutralliberalism, and showing how the concept of solidarity might helpto develop a (...) different account. Lastly, it discusses the case oforgan transplantion in Italy, as an example ofsolidarity-inspired health care policy. (shrink)

In December 2007 it was revealed that the British government is considering the exclusion of certain groups of migrants—those considered to be present “illegally”—from primary health care provided by the National Health Service. At present, practitioners have discretion to accept any individual for NHS treatment regardless of their status. A joint Home Office and Department of Health review is examining this access for foreign nationals, and the likely outcome is the restriction of access to irregular migrants, which would, according to (...) the Institute of Public Policy Research, affect around 390,000 people. In 2004 such groups were excluded from NHS secondary care, most controversially from treatment for HIV, and so the present proposal would bar them from all but emergency health treatment. (shrink)

Decision-making capacity is a vital concept in law, ethics, and clinical practice. Two legal cases where capacity literally had life and death significance are NHS Trust v Ms T [2004] and Kings College Hospital v C [2015]. These cases share another feature: unusual beliefs. This essay will critically assess the concept of capacity, particularly in relation to the unusual beliefs in these cases. Firstly, the interface between capacity and unusual beliefs will be examined. This will show that the “using and (...) weighing of information” is the pivotal element in assessment. Next, this essay will explore the relationship between capacity assessment and a decision’s “rationality.” Then, in light of these findings, the essay will appraise the judgments in NHS v T and Kings v C, and consider these judgments’ implications. More broadly, this essay asks: Does capacity assessment examine only the decision-making process, or is it also influenced by a decision’s rationality? If influenced by rationality, capacity assessment has the potential to become “a search and disable policy aimed at those who are differently orientated in the human life-world”. In contentious cases like these, this potential deserves attention. (shrink)

It is clearly unethical for the NHS to tell people that they will die sooner unless they pay for private treatment, and then to tell them that if they pay for private treatment they will have to pay the NHS for its insufficient service. This is all the more true if people in other parts of the country are receiving all the drugs they need for the same condition on the NHS. Patients who discover that the NHS care that they (...) have paid for will not keep them alive should be able to supplement their care privately if they can afford it, without the added burden and insult of being told their independently inadequate NHS care will cease unless they pay for it too. Mired in self-contradiction as it is, the NHS’ "anti-two-tier" policy must change. (shrink)

In the United Kingdom, a number of National Health Service Clinical Commissioning Groups have proposed controversial measures to restrict elective surgery for patients who either smoke or are obese. Whilst the nature of these measures varies between NHS authorities, typically, patients above a certain Body Mass Index and smokers are required to lose weight and quit smoking prior to being considered eligible for elective surgery. Patients will be supported and monitored throughout this mandatory period to ensure their clinical needs are (...) appropriately met. Controversy regarding such measures has primarily centred on the perceived unfairness of targeting certain health states and lifestyle choices to save public money. Concerns have also been raised in response to rhetoric from certain NHS authorities, which may be taken to imply that such measures punitively hold people responsible for behaviours affecting their health states, or simply for being in a particular health state. In this paper, we examine the various elective surgery rationing measures presented by NHS authorities. We argue that, where obesity and smoking have significant implications for elective surgical outcomes, bearing on effectiveness, the rationing of this surgery can be justified on prognostic grounds. It is permissible to aim to maximise the benefit provided by limited resources, especially for interventions that are not urgently required. However, we identify gaps in the empirical evidence needed to conclusively demonstrate these prognostic grounds, particularly for obese patients. Furthermore, we argue that appeals to personal responsibility, both in the prospective and retrospective sense, are insufficient in justifying this particular policy. Given the strength of an alternative justification grounded in clinical effectiveness, rhetoric from NHS authorities should avoid explicit statements, which suggest that personal responsibility is the key justificatory basis of proposed rationing measures. (shrink)

Compassionate care is a foundation of the National Health Service. However, several high-profile inquiries into healthcare failures in the NHS suggest compassion is often absent in our hospitals. Ensuing policies mandate healthcare professionals to ‘show more compassion’ but, as the psychological evidence-base indicates, this instruction neglects the complexity of this social emotion. This paper applies the psychological research on compassion to modern healthcare settings with the aim of creating a better understanding of the pathways leading to uncompassionate care. A review (...) of the empirical evidence suggests a range of psychological factors modulate compassion. In particular, the psychological literature indicates the human compassion system is adaptive, highly attuned to its environment. As such, a healthcare professional’s ability to experience and display compassionate behaviour will be, in part, determined by the environment in which they practise; that is, aspects of the organisational environment will either facilitate or inhibit compassion. This paper argues that the typical organisational set-up of a modern healthcare setting seriously undermines compassionate care. Organisational features frequently associated with uncompassionate care include the understaffing of hospital wards, excessive working shift patterns and the dogged focus on achieving service efficiencies—each has been identified as contributing to the alarming breakdown of compassionate care at the centre of several healthcare failings. Policies focusing on culture change in the NHS neglect the growing psychological evidence base on compassion, but by applying a psychological understanding of compassion to healthcare settings, we can begin to adequately understand and address the real causes of uncompassionate care. (shrink)

The Royal Liverpool Children’s Inquiry investigated the circumstances leading to the removal, retention, and disposal of human tissue, including children’s organs, at the Royal Liverpool Children’s NHS Trust . It recommended changes to procedures for obtaining consent for postmortems and retaining organs and tissues for research or education. However, the report contains five areas of confusion. Firstly, it allowed the cultural and historical traditions of horror over the use and misuse of body parts to suffuse the logical analysis of past (...) wrongs and future rights. Secondly, it makes an inappropriate conflation between seeking redress for past wrongs and shaping future policy. Thirdly, the report takes a muddled stance over the value of bodily integrity at burial. Fourthly, the report is inconsistent over the justification for future organ and tissue collections. Fifthly, the notion of “respect” is used with troublesome looseness. The extent to which subsequent policy work has furthered the search for greater ethical clarity over these difficult issues is discussed, together with reflection on three particular improvements that could be made to the process of such an inquiry. (shrink)

To address longstanding workforce shortages, increase efficiency and control the costs associated with the modern health-care provision, there has been a worldwide policy to promote increased flexibility within the health-care workforce. This is being done primarily by extending the ‘scope of practice’ of existing occupational roles into what is referred to as ‘advanced’ practice. The development of the advanced practice nurse (APN) has occurred within the context of a shortage of medical staff, and the need to control cost. However, (...) the means by which substantially repurposed occupational groups such as these, are incorporated into complex, hierarchical organisations such as the UK national health service (NHS) remains poorly understood. Using modern sociological theory, the development of the APN role has been examined in terms of power, control, professional identity and gender relations. Each of the theoretical approaches used adds to the quality of the discussion, although none provide a comprehensive picture. However, when synthesised, they do provide an enhanced insight into the evolution of the role. It is argued here that by critically examining the development of the APN role, this will enable both a better understanding of, and the means to influence, its future direction of travel. (shrink)

In November 2008 Professor Mike Richards issued his much awaited review of the British Department of Health's policy on out-of-pocket payments for drugs not approved as cost effective by the National Institute for Health and Clinical Excellence. The policy stated, or had been construed as stating, that those who top up thereby became ineligible for further National Health Service treatment for the condition targeted by the drug. For instance, if a lung cancer sufferer bought Avastin, which is not (...) NICE approved, she could no longer receive free treatment for her cancer on the NHS's tab. Richards, the National Cancer Director, recommended that the policy be repealed. From an ethical point of view, this change should be enthusiastically welcomed. (shrink)

A new Clinical Ethics Advisory Group was created to contribute to NHS Trust policies and guidelines in response to ethical issues arising from the COVID-19 pandemic. An ethical analysis framework used in medical education, the CoRE-Values Compass and Grid, was adapted to form a step-wise ‘ABC’ decision-making process. CEAG members found the framework simple to understand and use and the model facilitated time-efficient decisions that were explicitly justifiable on moral, ethical, professional and legal grounds. The adapted CoRE-Values framework might help (...) facilitate decision-making processes for similar new clinical ethics advisory or support committees. (shrink)

Ethical guidance for genomic research is increasingly sought and perceived to be necessary. Although there are pressing ethical issues in genomic research – concerning for example the recruitment of patients/participants; the process of taking consent; data sharing; and returning results to patients/participants – there is still limited useful guidance available for researchers/clinicians or for the research ethics committees who review such projects. This report outlines the ethical principles and guidance for genomic research co-produced with stakeholders during two workshops which took (...) place in the UK between November 2016 and May 2017. The stakeholders involved in these workshops included: healthcare professionals, genomic research teams, academics, patients, biobank managers, and representatives from the Health Research Authority, NHS Research Ethics Committees, patient support groups, pharmaceutical industry, and health policy think tanks. The co-produced principles and guidance are specifical... (shrink)

The pandemic significantly raised the stakes for the translation of bioethics insights into policy. The novelty, range and sheer quantity of the ethical problems that needed to be addressed urgently within public policy were unprecedented and required high‐bandwidth two‐way transfer of insights between academic bioethics and policy. Countries such as the United Kingdom, which do not have a National Ethics Committee, faced particular challenges in how to facilitate this. This paper takes as a case study the brief (...) career of the Ethics Advisory Board (EAB) for the NHS Covid‐19 App, which shows both the difficulty and the political complexity of policy‐relevant bioethics in a pandemic and how this was exacerbated by the transience and informality of the structures through which ethics advice was delivered. It analyses how and why, after EAB's demise, the Westminster government increasingly sought to either take its ethics advice in private or to evade ethical scrutiny of its policies altogether. In reflecting on EAB, and these later ethics advice contexts, the article provides a novel framework for analysing ethics advice within democracies, defining four idealised stances: the pure ethicist, the advocate, the ethics arbiter and the critical friend. (shrink)

The articles in this issue explore a number of difficult choices in medical care and research. They investigate ethical complexity in a range of decisions faced by policymakers and clinicians, and offer new evidence or normative approaches for navigating this complexity. In this issue’s feature article, Ford and colleagues engage with an ethical challenge faced by policymakers in relation to health research: should free text data contained in medical records be shared for research purposes?1 While some types of data from (...) electronic medical records are used widely in health research, privacy concerns have limited the use of free text data specifically. Ford and colleagues highlight the richness of the clinical information in free text and its centrality to some areas of healthcare such as mental health and primary care. In their view, while text analytic technology is developing rapidly, ‘policy makers routinely judge that the risk of re-identifying patients from text data is too high for these data uses’. Their citizens’ jury study in the UK found that participants were largely in favour of medical free text data being shared outside the NHS for research using an opt-out model: ‘the majority of jurors believed the benefits of sharing data for research outweighed the privacy risks’. In their commentary on this research, Largent and Morain raise some important issues about policymakers’ use of empirical findings …. (shrink)

In this issue of the JME, age-old questions around how to balance the interests of mother and fetus are revisited in two separate contexts: alcohol consumption during pregnancy, and maternal request caesarean sections. Both have been the subject of recent controversy in the UK, with March 2022 seeing the introduction of new National Institute for Clinical Excellence Quality Standards on combatting foetal alcohol spectrum disorder 1; and the publication of the long-awaited Ockenden Review into a series of failures in NHS (...) maternity care.2 Both raise important questions about the role of healthcare professionals in policing women’s choices during pregnancy and childbirth, and of the importance of deference to and trust in those choices. In this issue’s Feature Article, Rebecca Bennett and Catherine Bowden explore recent proposals to enhance the screening of pregnant women in order to prevent instances of fetal alcohol spectrum disorder through more accurately determining the true prevalence of alcohol consumption during pregnancy.3 Public Health England has suggested research into tools such as blood biomarkers and meconium testing,4 which could better identify those women who are consuming alcohol ‘covertly’ and so make FASD diagnoses more straightforward. As Bennett and Bowden rightly suggest, such a move is unlikely to realise the kind of public health or welfare gains which would justify this level of interference with the women’s autonomy, and may even result in more harm through discouraging engagement with antenatal care. However even absent these very intrusive methods of surveillance, the precautionary principle which underpins such policies — namely that in the absence of evidence that any alcohol is safe, women should be instructed to avoid it altogether — is itself difficult to justify. The evidence on alcohol consumption during pregnancy is mixed. While it is widely accepted that heavy …. (shrink)