For well over 40 years, the United States has struggled to improve end-of-life care. This effort, heavily focused on living wills, hospice and improved doctor–patient communications and palliative care, has been a modest success only. Both doctors and patients are often unwilling to accept the fact that death is on the way – only 25% of Americans have an advance directive. Advances in medical technology have provided more ways of keeping dying patients alive, making the line between living and dying harder to discern. The way physicians are paid promotes the use of technology not for talking with patients. Underlying these practical problems is a culture of American medicine with deep historical roots: that medical progress should be unending and is a moral imperative, that death is the greatest enemy and that cure, not care, is the primary goal. A better balance between care and cure is needed.

Since 1990, market mechanisms have occurred in the predominantly hierarchical National Health Service (NHS). The Health and Social Care Act 2012 led to concerns that market principles had been irrevocably embedded in the NHS and that the regulators would acquire unwarranted power compared with politicians (known as ‘juridification’). To assess this concern, we analysed regulatory activity in the period from 2015 to 2018. We explored how economic regulation of the NHS had changed in light of the policy turn back to hierarchy in 2014 and the changes in the legislative framework under Public Contracts Regulations 2015. We found the continuing dominance of hierarchical modes of control was reflected in the relative dominance and behaviour of the sector economic regulator. But there had also been a limited degree of juridification involving the courts. Generally, the regulatory decisions were consistent with the 2014 policy shift away from market principles and with the enduring role of hierarchy in the NHS, but the existing legislative regime did allow the incursion of pro market regulatory decision making, and instances of such decisions were identified.

This paper maps key regulatory, governance and legal challenges associated with the UK's withdrawal from the European Union (EU) in terms of convergent and divergent pressures within the global pharmaceutical sector. These include (i) convergent regulatory pressures associated with the European framework for pre-market licensing; (ii) convergent and divergent industry pressures with regard to drug discovery and manufacturing; and (iii) divergent and convergent market pressures associated with the supply, pricing and assessment of medicines. The UK's sovereign ambitions risk a loss of influence over the licensing and surveillance of pharmaceuticals under convergent regulatory and industry pressures to engage in unilateral participation in the European regime. Further, they also risk a loss of influence over processes for pricing and assessing the effectiveness of new treatment regimens under divergent market pressures from larger pharmaceutical markets outside the EU, notably the United States.

Previous evidence suggests that members of the public value life saving services differently when they are for patients with a pre-existing permanent disability and when they are for patients who become disabled at the onset of treatment – for example, as a result of treatment that is not entirely effective. However, the valuation of services in these two cases has also been found to differ with the order in which they are presented in a population survey. This casts doubt upon the validity of the results and leaves unresolved the nature of the public’s true preferences. The study reported here had three main objectives: (i) to determine the considered, underlying preferences of a sample of the Australian public with respect to the treatment of the permanently disabled and chronically ill, (ii) to gain insight into the reasons for respondent’s distributive preferences and (iii) to eliminate or significantly reduce the order effect. Eight semi-structured, small-group discussions were held with 66 members of the public in Victoria, Australia. Order effects were effectively eliminated. The study found substantial support among participants for the equal treatment of the permanently disabled and chronically ill regardless of when the problem commenced.

Black medicine represents the most problematic configuration of informal payments for health care. According to the accepted economic explanations, we would not expect to find black medicine in a system with a developed private service. Using Israel as a case study, we suggest an alternative yet a complimentary explanation for the emergence of black medicine in public health care systems – even though citizens do have the formal option to use private channels. We claim that when regulation is weak and political culture is based on ‘do it yourself’ strategies, which meant to solve immediate problems, blurring the boundaries between public and private health care services may only reduce public trust and in turn, contribute to the emergence of black medicine. We used a combined quantitative and qualitative methodology to support our claim. Statistical analysis of the results suggested that the only variable significantly associated with the use of black medicine was trust in the health care system. The higher the respondents’ level of trust in the health care system, the lower the rate of the use of black medicine. Qualitatively, interviewee emphasized the relation between the blurred boundaries between public and private health care and the use of black medicine.

The relevance of the European Union (EU) for health has been widely recognised within the health community for some time, and is increasingly apparent to European policy-makers and publics. Despite being an area of policy that national governments would prefer to keep exclusive control of, and though in the past it has rarely been at the top of the agenda, many elements of health have been gradually ‘Europeanised’. This special issue marks the culmination of a British Academy-funded project – EU Health Law and Policy: Shaping a Future Research Agenda – which sought to build on the growing web of expertise in this field and reflect upon the future of health as an EU competence, at a time when it appeared to be under threat.

Whenever there are well-publicised pressures on acute care, there is a tendency for policy makers and the media to imply that a significant number of older people may be taking up hospital beds when they do not really need the services provided there. However, evidence to back up such claims is often lacking, and existing research tends to fail to engage meaningfully with older people themselves. In contrast, this research explores the emergency hospital admissions of older people in three English case study sites, drawing on the lived experience of older people and the practice wisdom of front-line staff to explore the appropriateness of each admission and scope for alternatives to hospital. Contrary to popular opinion, the study did not find evidence of large numbers of older people being admitted to hospital inappropriately. Indeed, some of the older people concerned delayed seeking help and only ended up at hospital as a very last resort, possibly due to concerns about being seen as a burden on scarce public resources. While older people and front-line staff identified a number of suggestions to improve services in future, there seemed few clear cut, easy answers to the longstanding dilemma of how best to reduce emergency admissions. Seeking to understand and potentially reduce emergency hospital admissions is complex, and it is important to consider the experiences and expertise of older people and front-line staff.

The 2012 Supreme Court decision in National Federation of Independent Business v Sebelius gave states the option to adopt the Medicaid expansion as part of the Affordable Care Act. Many states, especially those under Republican control, have since grappled with their decision to implement the expansion. We conduct a comparative analysis of how Republican governors framed their stance on the Medicaid expansion. We analyze public statements on the Medicaid expansion published in two major in-state newspapers from all Republican governors from June 2012 through June 2018. In total we collected, coded and analyzed 3277 statements from 66 newspapers. Several key themes emerge from our analysis. While every Republican governor used oppositional framing as part of their rhetorical response to the Medicaid expansion, the policy had a destabilizing effect on the previously unified opposition to health reform. We find that Republican framing split after the results of the 2012 election and that overall Republican governors shifted towards more supportive framing prior to the 2016 presidential election. Republican governors transformed how they framed their stance towards Medicaid expansion after Donald Trump was elected in 2016, with both supportive and oppositional moral-based framing of expansion increasing. These findings inform how policymakers use rhetoric to support their stance on controversial policies in a hyper-partisan and polarized political environment.

As more and more clinical trials are conducted in developing countries, concerns arise about non-trial medical care available to study participants. Recent work argues for ancillary care – medical care not part of the clinical trial per se – to be formally incorporated into these studies. Although the provision of ancillary care is often justified on ethical grounds, a number of crucial implementation issues remain unresolved, including its scope, duration and financing. Drawing on lessons from health insurance benefit design, we highlight two overlooked challenges for ancillary care adoption – adverse selection and moral hazard – and offer recommendations that could attenuate their consequences. Specifically, adverse selection and moral hazard could be reduced by offering a choice between ancillary medical care and monetary compensation or rewarding low ancillary care utilization. Alternatively, researchers’ financial risk due to ancillary care could be shifted to a third-party insurer. Recognizing participants’ behavioral responses to prospective offers of ancillary medical care would allow funders and research teams to forecast the demand for ancillary care more accurately and to prepare for its provision more adequately.

Different countries have adopted different strategies for tackling the challenge of allocating scarce health care resources fairly. Norway is one of the countries that has pioneered the effort to resolve priority setting by using a core set of priority-setting criteria. While the criteria themselves have been subject to extensive debate and numerous revisions, the question of how the criteria have been applied in practice has received less attention. In this paper, we examine how the criteria feature in the decisions and justifications of the Norwegian National Council for Priority Setting in Health Care, which has played an active role in deliberating about health care provision and coverage in Norway. We conducted a comprehensive document analysis, looking at the Council’s decisions about health care allocation as well as the reasons they had provided to justify their decisions. We found that although the Council often made use of the official priority-setting criteria, they did so in an unsystematic and inconsistent manner.

Consumer-directed health care (CDHC) is one of the basic ideas that has emerged in recent years as a way of bringing greater efficiency and cost control into health care. Its principal aims are to give patients greater control over their care, economically as well as medically, and to improve competition among providers to increase the range of patient control. Its roots are American, bespeaking a cultural suspicion of government, a worry about rising costs, and an appeal to the popularity of choice in almost all matters, now including health care. CDHC also bespeaks the ideology of market ideology, drawing on both market concepts in economics and a push by American conservatives (particularly President George W. Bush) to privatize as much of American health care as possible). It draws particularly on the business community as a source of ideas and inspiration, assuming that if choice and competition work well in the commercial sector, it will work equally well in health care. A fundamental question, however, is not simply how well business models might work, but also whether thinking of the patient as a savvy consumer could ever make full sense in the face of complicated, emotionally charged illnesses and complex decision-making situations. Skepticism is in order.

Health misinformation, most visibly following the COVID-19 infodemic, is an urgent threat that hinders the success of public health policies. It likely contributed, and will continue to contribute, to avoidable deaths. Policymakers around the world are being pushed to tackle this problem. Legislative acts have been rolled out or announced in many countries and at the European Union level. The goal of this paper is not to review particular legislative initiatives, or to assess the impact and efficacy of measures implemented by digital intermediaries, but to reflect on the high constitutional and ethical stakes involved in tackling health misinformation through speech regulation. Our findings suggest that solutions focused on regulating speech are likely to encounter significant constraints, as policymakers grasp with the limitations imposed by freedom of expression and ethical considerations. Solutions focused on empowering individuals – such as media literacy initiatives, fact-checking or credibility labels – are one way to avoid such hurdles.

The influence of European Union (EU) law on private health insurance has not received as much attention as its impact on other parts of the health system (Hervey, 2007). Now is a good time to redress this relative neglect, as growing interest in private health insurance – in particular, its potential to relieve pressure on public budgets and enhance choice – raises questions about how best to create or expand and shape markets to achieve specific aims. There are no easy answers to these questions, but one thing seems clear: if policy makers intend to use private health insurance to achieve a particular objective, they must be able to direct market behaviour appropriately. Otherwise, the type of market most likely to emerge is one that simply provides access to acute care in the private sector for wealthier people. However, in newer markets lack of regulatory capacity often presents a barrier to effective policy direction (Thomson et al., 2007 forthcoming). In the established markets of the EU, many of the constraints facing policy makers come from single market legislation. Here we use the case of the Third Non-Life Insurance Directive to illustrate some of these constraints and to show how they can undermine the achievement of health policy goals such as financial protection, equity of access to health care and quality or efficiency in the organization, administration, and delivery of health services.

Explanations of the state of ‘crisis’ in the English National Health Service (NHS) generally focus on the overall level of health care funding rather than the way in which funding is distributed. Describing systematic patterns in the way different areas are experiencing crisis, this paper suggests that NHS organisations in older, rural and particularly coastal areas are more likely to be ‘failing’ and that this is due to the historic underfunding of such areas. This partly reflects methodological and technical shortcomings in NHS resource allocation formulae. It is also the outcome of a philosophical shift from horizontal (equal access for equal needs) to vertical (unequal access to equalise health outcomes) principles of equity. Insofar as health inequalities are determined by factors well beyond health care, we argue that this is an ineffective approach to addressing health inequalities. Moreover, it sacrifices equity in access to health care by failing to adequately fund the health care needs of older populations. The prioritisation of vertical over horizontal equity also conflicts with public perspectives on the NHS. Against this background, we ask whether the time has come to reassert the moral and philosophical case for the principle of equal access for equal health care need.

The success of performance management in health care depends crucially on the response of health care professionals to the various instruments of performance management (PM). Yet we know little about how those professionals think and work. They may ignore PM for three reasons: ignorance of the relevant performance information; lack of faith in the credibility of the information; or inability to take relevant action. Furthermore, there is a risk that PM comes into fundamental conflict with the idea of professional autonomy and personalization of care. In order to create more effective PM policies, we need to know much more about professional motivations and constraints.