In 1990 the landmark Americans with Disabilities Act (ADA) became federal law with the express purpose to “establish a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities."l The act includes separate titles prohibiting discrimination on the basis of disability in employment, public services, transportation and public accommodations. Since it prohibits discrimination on the basis of disability in both public and private services and programs, in health care “it applies to programs provided by (...) the government, benefits provided by employers, and services pro- ”2 vided by physicians.Moreover, the ADA defines disability broadly to include “any.. (shrink)

Rationing is the allocation of a good under conditions of scarcity, which necessarily implies that some who want and could be benefitted by that good will not receive it. One reflection of our ambivalence towards health care rationing is reflected in our resistance to having it distributed in a market like most other goods—most Americans reject ability to pay as the basis for distributing health care. They do not view health care as just another (...) commodity to be distributed by markets. Despite this widespread view, we are the only developed country without some form of universal health insurance, and so for the 46 million Americans without health insurance their access to health care often does depend on their ability to pay for it. Rationing largely remains a topic that the public, their elected leaders, and many health care professionals prefer to avoid. Ever-growing costs of health care will increasingly force the practice and issue of health care resource prioritization and rationing into the open for public, professional, and political attention. This paper explores some of the features of those practices and issues that make them especially ethically and politically difficult. Those issues will not be easily resolved, but avoiding them will not avoid the need or reality of rationing, it will only mean that it will go on covertly and unexamined. That will lead neither to better or more legitimate prioritization and rationing decisions. (shrink)

This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective. This account leads up to a number of theoretical as well as empirical and practice oriented issues (...) that, in view of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective. (shrink)

Elective surgery can be cancelled when resources are overwhelmed by emergency cases. We hypothesized that such cancellations, on psychological grounds, are followed also by inferior clinical results and we conducted a retrospective survey of patients following joint replacement surgery. Sixty patients having suffered from administrative cancellation prior to their operation during an 18-month period and with six months follow-up were identified and compared with another 60 matched patients after having the same type of surgery but without prior cancellation. All patients (...) received questionnaires on complications and on visual analogue scale (VAS) assessment on subjective wellbeing and quality of life (QoL) at follow-up. The study group reported 50 complications versus 33 for controls (P < 0.03). A borderline significant difference was found for myocardial infarction, 4 versus 0 (P < 0.05). There was no difference in VAS registration and QoL measurements did not quite reach statistical significance (P = 0.06). Cancellations (postponements) of elective surgery for administrative reasons may be followed by inferior clinical results, and this merits further prospective study. (shrink)

The principle that each individual is entitled to an equal opportunity to benefit from any public health care system, and that this entitlement is proportionate neither to the size of their chance of benefitting, nor to the quality of the benefit, nor to the length of lifetime remaining in which that benefit may be enjoyed, runs counter to most current thinking about the allocation of resources for health care. It is my contention that any system of (...) prioritisation of the resources available for healthcare or of rationing such resources must be governed by this principle. -/- This can have apparently paradoxical conclusions in that it can seem wasteful to give someone with a very slim chance of a lifesaving treatment the same priority as someone with a much better chance. In an important and thoughtful recent paper, Julian Savulescu has concentrated on this apparent weakness and has argued for a particular conception of the good or benefit to be achieved by a healthcare system which purports to demonstrate the inadequacies of an equal opportunities approach to prioritisation and to replace it with an altogether better account. This paper will show that a rational ‘reasons based consequentialism’ is more in line with the equal opportunities approach, which I defended some time ago in these pages, than with that of Savulescu. I shall then examine more closely the conception of equal opportunities in health care and show that if we give weight to an individual's reasons, and what is expected to be good for them, we will opt for exactly the equality based account of distributive justice that I have recommended. (shrink)

This paper sets out to discuss what precisely is meant by ‘‘benefit" when we talk of the requirement that the health care system concern itself with health gain or with maximizing beneficial health care. In particular I argue that in discharging the duty to do what is most beneficial we need to choose between rival conceptions of what is meant by beneficial. One is the patient's conception of benefit and the second is the provider's or (...) funder's conception of benefit. I argue that it is the patient's conception of benefit which is paramount and that if this is followed it commits us to a conception of patient care which must be blind to prognosis in so far as prognosis is thought to bear upon issues of prioritisation or resource allocation. (shrink)

Health care systems throughout the developed world face ‘crises’ of quality, financing and sustainability. These pressures have led governments to look for more efficient and equitable ways to allocate public resources. Prioritisation of health care services for public funding has been one of the strategies used by decision makers to reconcile growing health care demands with limited resources. Priority setting at the macro level has yet to demonstrate real successes. This paper describes international approaches (...) to explicit prioritisation at the macro-governmental level in the six experiences most published in the English literature; analyzes the ways in which values, principles and other normative concepts were presented in these international priority setting experiences; and identifies key elements of a more robust framework for ethical analysis which could promote meaningful and effective health priority setting. (shrink)

Modern health care rhetoric promotes choice and individual patient rights as dominant values. Yet we also accept that in any regime constrained by finite resources, difficult choices between patients are inevitable. How can we balance rights to liberty, on the one hand, with equity in the allocation of scarce resources on the other? For example, the duty of health authorities to allocate resources is a duty owed to the community as a whole, rather than to specific individuals. (...) Macro-duties of this nature are founded on the notion of equity and fairness amongst individuals rather than personal liberty. They presume that if hard choices have to be made, they will be resolved according to fair and consistent principles which treat equal cases equally, and unequal cases unequally.In this paper, we argue for greater clarity and candour in the health care rights debate. With this in mind, we discuss (1) private and public rights, (2) negative and positive rights, (3) procedural and substantive rights, (4) sustainable health care rights and (5) the New Zealand booking system for prioritising access to elective services. This system aims to consider: individual need and ability to benefit alongside the resources made available to elective health services in an attempt to give the principles of equity practical effect. We describe a continuum on which the merits of those, sometimes competing, values—liberty and equity—can be evaluated and assessed. (shrink)

The amount allocated to publicly funded health care for 2005/06 in New Zealand, a small country of some four million people, is $NZ 9.68 billion, or 6.2% of GDP, an increase from the 5.7% of GDP in 2000/01. The Minister of Finance has recently signalled that spending in health and education has outpaced economic growth, and that the present rate of growth in health spending, which has grown at about 7% a year over the last decade, (...) is unsustainable. Despite these big funding increases in recent years, the perception of New Zealanders is that the extra spending has made little difference, at least to hospital services and to people’s ability to access treatment. In surveys, health emerges as a leading concern for New Zealanders. Their concern is apparently less about the quality of services, than about their ability to access treatment - whether they will be able to access timely health care when they or their family members need it. (shrink)

A just social arrangement must guarantee a right to health care for all. This right should be understood as a positive right to basic human functional capabilities. The present article aims to delineate the right to health care as part of an account of distributive justice in health care in terms of the sufficiency of basic human functional capabilities. According to the proposed account, every individual currently living beneath the sufficiency threshold or in jeopardy (...) of falling beneath the threshold has a legitimate claim to justice. People's entitlements to health care should not be determined on the basis of brute luck and their efforts to maintain healthy lifestyles. The prioritization of competing claim-rights of individuals is guided by two allocation principles: number and benefit-size weighted sufficiency (among people beneath the threshold) and need-weighted utilitarianism (among people above the threshold). (shrink)

This chapter examines whether an individual’s being worse off than others should be a relevant consideration in the allocation of limited medical resources. It reviews arguments pressed by proponents of different theories of justice about whether being worse off than others makes special demands on health care resource prioritization. Even if there is good reason to restrict the concern for the worse off to those with worse health in the prioritization and allocation of health (...) care resources, additional issues remain. One is how to determine who has worse health, and whether the worse off are those with the worse overall health or those with the most serious medical condition now in need of treatment. Another issue is whether only individuals’ present health, or instead their lifetime health, including past and expected future health, is relevant. (shrink)

The aim of this study was to describe the reasoning of people aged 60 years and over about prioritization in health care with regard to age and willingness to pay. Healthy people (n = 300) and people receiving continuous care and services (n = 146) who were between 60 and 101 years old were interviewed about their views on prioritization in health care. The transcribed interviews were analysed using manifest and latent qualitative content (...) analysis. The participants' reasoning on prioritization embraced eight categories: feeling secure and confident in the health care system; being old means low priority; prioritization causes worries; using underhand means in order to be prioritized; prioritization as a necessity; being averse to anyone having precedence over others; having doubts about the distribution of resources; and buying treatment requires wealth. (shrink)

Currently there is an inequity in transfer rates of uninsured patients versus their insured counterparts. While this may vary by hospital system, studies indicate that this is a national trend, especially in emergency situations, and represents a prioritisation of profits over ethical obligations. This creates a variety of ethical issues for patients and society that generates a concordance between deontological and utilitarian viewpoints, two generally opposed schools of thought. The prioritisation of profit maximisation in order to provide better care (...) for a select population is insufficient to justify deleterious health outcomes, stress and financial burden on patients. Current policy regarding patient transfers in the emergency department is insufficient to protect the uninsured and must be reevaluated. (shrink)

This article addresses some ambiguities and normative problems with the concept of mature care in professional relationships and in health care priorities. Mature care has recently been introduced in the literature on care ethics as an alternative to prevailing altruistic conceptions of care. The essence of mature care is an emphasis on reciprocity, where the mature agent has the ability to balance the concerns of self with those of others and act from a (...) principle of not causing harm. Our basic claim is that the prevailing concept of mature care does not capture the real nature of professional relationships and role obligations in health care. As the focus of attention in professional care is and must be the patient’s particular medical and care needs, such care must principally be altruistic. Furthermore, we argue that mature care cannot adequately address moral conflict in health care without accepting some more principle-based approaches and a richer notion of partiality. (shrink)

To study hospital physicians’ awareness and perceptions of the legal and financial regulations, and their impact on professional discretion regarding equity in access to treatment and quality of care. A sample of 637 physicians in the Norwegian specialist healthcare services selected from a survey conducted by the Institute for Studies of the Medical Profession. The paper investigates how legal and financial policy instruments affect the application of professional discretion regarding the prioritisation of specialist health services. Descriptive statistics and (...) regressions were conducted for the analyses. Compared with financial incentives, legal regulations (laws, priority rules and guidelines) were assessed to be less negative external interventions in the exercise of medical and professional judgement. The empirical analyses revealed a positive tendency in physicians’ assessments of the impact of legal regulations on treatment equity and healthcare quality, but negative attitudes towards financial instruments. The variations revealed are attributable to various structural and epistemic features of the legal–bureaucratic and economic models of administration in this area of the welfare state. Legal and financial regulations are imposed to achieve certain social goals and values. The findings of this study can provide further insight for the health authorities in other countries concerning implementation of such regulations in the specialist healthcare services. (shrink)

That the maximization of quality-adjusted life years violates concerns for fairness is well known. One approach to face this issue is to elicit fairness preferences of the public empirically and to incorporate the corresponding equity weights into cost-utility analysis (CUA). It is thereby sought to encounter the objections by means of an axiological modification while leaving the value-maximizing framework of CUA intact. Based on the work of Lübbe (2005, 2009a, 2009b, 2010, forthcoming), this paper questions this strategy and scrutinizes the (...) concomitant assumptions concerning the nature of prioritization decisions. Empirical studies indicate that these premises are in fact unwarranted. People chose a certain resource allocation because they perceive it as a fair way to treat the persons concerned, not because it maximizes something valuable, and it is questionable if prioritization decision can be represented as value-maximizing choices at all. This reflection on the fundamental distinction between deontological and consequentialist reasoning bears general implications for the scope of ‘economic imperialism.’. (shrink)

In order to create sustainable health systems, many countries are introducing ways to prioritize health services underpinned by a process of health technology assessment. While this approach requires technical judgments of clinical effectiveness and cost-effectiveness, these are embedded in a wider set of social (societal) value judgments, including fairness, responsiveness to need, non-discrimination and obligations of accountability and transparency. Implementing controversial decisions faces legal, political and public challenge. To help generate acceptance for the need for health (...) prioritization and the resulting decisions, the purpose of this paper is to develop a novel way of encouraging key stakeholders, especially patients and the public, to become involved in the prioritization process. (shrink)

Germany has just started a public debate on priority-setting, rationing and cost-effectiveness due to the cost explosion within the German health care system. To date, the costs for German health care run at 11,6 % of its Gross Domestic Product (GDP, 278,3 billion €) that represents a significant increase from the 5,9 % levels present in 1970. In response, the German Parliament has enacted several major and minor legal reforms over the last three decades for the (...) sake of cost containment and maintaining stability of the health care system. The Statutory Health Insurance—SHI (Gesetzliche Krankenversicherung—GKV) is based on the fundamental principle of solidarity and provides an ethical and legal framework for implementing equity, comprehensiveness and setting the principles and rules for financing and providing health care services and benefits. Within the SHI system, several major actors can be identified: the Federal Ministry of Health, the 16 state ministries of health, the Federal Joint Committee (G-BA), the physicians (with their associations) and the hospitals (with their organizations) on the provider side, and the sickness funds with their associations on the purchasers’ side. This article reviews the structure and complexities of the German health care system with its major players and participants. The focus will be put on relevant ethical, legal and economic aspects for prioritization, rationalization, rationing and cost-effectiveness of medical benefits and services. In conclusion, this article pleads for open discussion on the challenging subject of priority-setting instead of accepting the implicit and non-transparent rationing of medical services that currently occurs at many different levels within the health care system, as it stands today. (shrink)

The Scandinavian welfare states have public health care systems which have universal coverage and traditionally low influence of private insurance and private provision. Due to raises in costs, elaborate public control of health care, and a significant technological development in health care, priority setting came on the public agenda comparatively early in the Scandinavian countries. The development of health care priority setting has been partly homogeneous and appears to follow certain phases. This (...) can be of broader interest as it may shed light on alternative models and strategies in health care priority setting. Some general trends have been identified: from principles to procedures, from closed to open processes, and from experts to participation. Five general approaches have been recognized: The moral principles and values based approach, the moral principles and economic assessment approach, the procedural approach, the expert based practice defining approach, and the participatory practice defining approach. There are pros and cons with all of these approaches. For the time being the fifth approach appears attractive, but its lack of true participation and the lack of clear success criteria may pose significant challenges in the future. (shrink)

At the 5th International Conference on Priorities in Health Care in Wellington, New Zealand, 2004, one resonating theme was that for priority setting to be effective, it has to include clinicians in both decision making and the enforcement of those decisions. There was, however, a disturbing undertone to this theme, namely that doctors, in particular, were unjustifiably thwarting good systems of prioritising scarce healthcare resources. This undertone seems unfair precisely because doctors may, and in some cases do, feel (...) obligated by their professional ethics to remain uninvolved either in deciding priorities and in some cases in enforcing them. I will argue that the professional role of a doctor ought not be considered inconsistent with the role of a priority setter or enforcer, as long as one crucial element is in place, a rationally coherent and broadly justifiable regime for prioritising healthcare. Given this I conclude both that prioritisation and doctoring are not incompatible under certain conditions, and that the education of healthcare professionals ought to include material on distributive justice in healthcare. (shrink)

The transplant community has faced unprecedented challenges balancing risks of performing living donor transplants during the COVID-19 pandemic with harms of temporarily suspending these procedures. Decisions regarding postponement of living donation stem from its designation as an elective procedure, this despite that the Centers for Medicare and Medicaid Services categorise transplant procedures as tier 3b (high medical urgency—do not postpone). In times of severe resource constraints, health systems may be operating under crisis or contingency standards of care. In (...) this manuscript, the United Network for Organ Sharing Ethics Workgroup explores prioritisation of living donation where health systems operate under contingency standards of care and provide a framework with recommendations to the transplant community on how to approach living donation in these circumstances.To guide the transplant community in future decisions, this analysis suggests that: (1) living donor transplants represent an important option for individuals with end-stage liver and kidney disease and should not be suspended uniformly under contingency standards, (2) exposure risk to SARS-CoV-2 should be balanced with other risks, such as exposure risks at dialysis centres. Because many of these risks are not quantifiable, donors and recipients should be included in discussions on what constitutes acceptable risk, (3) transplant hospitals should strive to maintain a critical transplant workforce and avoid diverting expertise, which could negatively impact patient preparedness for transplant, (4) transplant hospitals should consider implementing protocols to ensure early detection of SARS-CoV-2 infections and discuss these measures with donors and recipients in a process of shared decision-making. (shrink)

Explicit forms of rationing have already been implemented in some countries, and many of these prioritization systems resort to Norman Daniels’ “accountability for reasonableness” methodology. However, a question still remains: is “accountability for reasonableness” not only legitimate but also fair? The objective of this paper is to try to adjust “accountability for reasonableness” to the World Health Organization’s holistic view of health and propose an evolutionary perspective in relation to the “normal” functioning standard proposed by Norman Daniels. (...) To accomplish this purpose the authors depart from the “normal” functioning standard to a model that promotes effective opportunity for everyone in health care access, because even within the “normal” functioning criteria some treatments and medical interventions should have priority upon others. Equal opportunity function is a mathematical function that helps to hierarchize moral relevant necessities in health care according to this point of view. It is concluded, first, that accountability for reasonableness is an extremely valuable tool to address the issue of setting limits in health care; second, that what is called in this paper “equal opportunity function” might reflect how accountability for reasonableness results in fair limit-setting decisions; and third, that this methodology must be further specified to best achieve fair limit-setting decisions. Indeed, when resources are especially scarce the methodology suggested in this paper might allow not only prioritizing in an “all or nothing” basis but can contribute to a hierarchy system of priorities in health care. (shrink)

Abstract:This paper utilizes a qualitative case study of the health care industry and a recent legal case to demonstrate that stakeholder theory’s focus on ethics, without recognition of the effects of incentives, severely limits the theory’s ability to provide managerial direction and explain managerial behavior. While ethics provide a basis for stakeholder prioritization, incentives influence whether managerial action is consistent with that prioritization. Our health care examples highlight this and other limitations of stakeholder theory (...) and demonstrate the explanatory and directive power added by the inclusion of the interactive effects of ethics and incentives in stakeholder ordering. (shrink)

The concept of need is often proposed as providing an additional or alternative criterion to cost-effectiveness in making allocation decisions in health care. If it is to be of practical value it must be sufficiently precisely characterized to be useful to decision makers. This will require both an account of how degree of need for an intervention is to be determined and a prioritization rule that clarifies how degree of need and the cost of the intervention interact (...) in determining the relative priority of the intervention. Three common features of health care interventions must be accommodated in a comprehensive theory of need: the probabilistic nature of prognosis (with and without the intervention); the time course of effects; and the fact that the most effective treatments often combine more than one intervention. These common features are problematic for the concept of need. We outline various approaches to prioritization on the basis of need and argue that some approaches are more promising than others. (shrink)

has a wide range of options in choosing a health care system. Rational choice of a system depends on analysis and prioritization of the basis moral goals of equitable access to all citizens, the just sharing of financial costs between well and ill, respect for the values and choices of subscribers and patients, and efficiency in the delivery of costworthy care. These moral goals themselves, however, tell us little about what health care system the (...) United States should have. Equitable access does not demand a level and scope of care for the poor equal to that rationally chosen by the middle class, and there are ways within mixed systems, though not easy ways, to achieve a fair distribution of costs between well and ill. Despite pluralistic systems' apparent advantage in allowing subscribers to choose their own forms of rationing, problems in translating serious long-term subscriber choices into actual medical practice may be greater in pluralistic than in unitary systems. Final choice of a system hinges primarily on peculiar historical facts about U.S. political culture, not on moral principle. Keywords: access to health care, autonomy, efficiency, equality, experience rating, national health insurance CiteULike Connotea Del.icio.us What's this? (shrink)

Lifestyle-induced diseases are becoming a burden on healthcare, actualizing the discussion on health responsibilities. Using data from the National Association for Heart and Lung Diseases ’s 2015 Health Survey, this study examined the public’s attitudes towards personal and social health responsibility in a Norwegian population. The questionnaires covered self-reported health and lifestyle, attitudes towards personal responsibility and the authorities’ responsibility for promoting health, resource-prioritisation and socio-demographic characteristics. Block-wise multiple linear regression assessed the association between attitudes (...) towards health responsibilities and individual lifestyle, political orientation and health condition. We found a moderate support for social responsibility across political views. Respondents reporting unhealthier eating habits, smokers and physically inactive were less supportive of health promotion policies. The idea that individuals are responsible for taking care of their health was widely accepted as an abstract ideal. Yet, only a third of the respondents agreed with introducing higher co-payments for treatment of ‘self-inflicted’ conditions and levels of support were patterned by health-related behaviour and left-right political orientation. Our study suggests that a significant support for social responsibility does not exclude a strong support for personal health responsibility. However, conditional access to healthcare based on personal lifestyle is still controversial. (shrink)

ABSTRACTThe concept of need is often proposed as providing an additional or alternative criterion to cost‐effectiveness in making allocation decisions in health care. If it is to be of practical value it must be sufficiently precisely characterized to be useful to decision makers. This will require both an account of how degree of need for an intervention is to be determined and a prioritization rule that clarifies how degree of need and the cost of the intervention interact (...) in determining the relative priority of the intervention. Three common features of health care interventions must be accommodated in a comprehensive theory of need: the probabilistic nature of prognosis ; the time course of effects; and the fact that the most effective treatments often combine more than one intervention. These common features are problematic for the concept of need. We outline various approaches to prioritization on the basis of need and argue that some approaches are more promising than others. (shrink)

Thirty years of debate have passed since the term “Rule of Rescue” has been introduced into medical ethics. Its main focus was on whether or why medical treatment for acute conditions should have priority over preventive measures irrespective of opportunity costs. Recent contributions, taking account of the widespread reluctance to accept purely efficiency-oriented prioritization approaches, advance another objection: Prioritizing treatment, they hold, discriminates against statistical lives. The reference to opportunity costs has also been renewed in a distinctly ethical fashion: (...) It has been stipulated that favoring help for identifiable lives amounts to a lack of benevolence for one’s fellow creatures. The present article argues against both objections. It suggests that the debate’s focus on consequences should be reoriented by asking which aspects of such states of affairs are actually attributable to a decision maker who judges within a specific situation of choice. (shrink)

Enormous gaps between HIV burden and health care availability in low-income countries raise severe ethical problems. This article analyzes four HIV-priority dilemmas with interest across contexts and health systems. We explore principled distributive conflicts and use the Atkinson index to make explicit trade-offs between health maximization and equality in health. We find that societies need a relatively low aversion to inequality to favor treatment for children, even with large weights assigned to extending the lives of (...) adults: higher inequality aversion is needed to share resources equally between high-cost and low-cost treatment; higher inequality aversion is needed to favor treatment rather than prevention, and the highest inequality aversion is needed to favor sharing treatment between urban and rural regions rather than urban provision of treatment. This type of ethical sensitivity analysis may clarify the ethics of health policy choice. (shrink)

In times of ongoing resource shortages, appropriate evaluation criteria are crucial for the ethical prioritization of medical care. While the use of scoring models as tools for prioritization is widespread, they are barely discussed in the medical-ethical discourse in the context of the COVID-19 pandemic. During this time, the challenge of providing care for patients in need has promoted consequentialist reasoning. In this light, we advocate for the integration of time- and context-sensitive scoring (TCsS) models in (...) prioritization policies that foster treatment opportunities for patients with subacute and chronic conditions. We argue, first, that TCsSs enable a more efficient use of resources, reducing avoidable harm to patients by preventing arbitrary postponement of necessary but nonurgent interventions. Second, we contend that on an interrelational level, TCsSs render decision-making pathways more transparent, which promotes the information requirement of patient autonomy and raises confidence in the resulting prioritization decision. Third, we claim that TCsS contributes to distributive justice by reallocating available resources to the benefit of elective patients. We conclude that TCsSs promote anticipatory measures that extend the timeframe for responsible action into the future. This strengthens patients' ability to exercise their right to healthcare—primarily during times of crisis, but ultimately in the longer term too. (shrink)

The intensive care unit, with its structural complexity and the exposure of critically ill patients to various disparities, presents a significant setting for health disparities. This critical ethnographic study sought to uncover cultural knowledge and ethical practices for reducing health disparities in providing care services within the intensive care unit. The focus was on understanding how ethical considerations and cultural competence can address and mitigate these disparities effectively. This critical ethnographic study was conducted in 2022–2023 (...) at intensive care units in western Iran. Three interrelated phases were used to collect and analyze the data. More than 300 h of observation were done during the first phase. A horizon analysis was carried out in the next phase. To further enhance the dataset, 18 informants participated in semi-structured interviews and informal conversations. Following that, the analysis procedure was conducted to identify a culture of health disparities and factors that reduce it, as it had been in the prior stage. Trustworthiness data collection methods were implemented to ensure the validity and reliability of the study. Two key themes emerged from the study: (A) Improved cultural competence, which encompassed empathy towards patients and their families, effective communication, prioritization of continuous learning, appropriate knowledge and awareness, sensitivity to cultural and religious beliefs, staff attitude and personality, and the delivery of customized care tailored to each patient’s needs. (B) Supporting role and compensating for disparities involved recommendations for upholding ethical standards, compensatory actions, maintaining professional behavior despite external factors, addressing gaps and deficiencies, and actively defending and supporting patients. The findings indicate that staff with high cultural competence can ethically mitigate health disparities through their supportive roles. Managers and health policymakers should create barriers to health disparity by improving staff cultural competence and knowledge about health disparities. (shrink)

During a pandemic, demand for intensive care often exceeds availability. Experts agree that allocation should maximize benefits and must not be based on whether patients could have taken preventive measures. However, intensive care units are often overburdened by individuals with severe COVID-19 who have chosen not to be vaccinated to prevent the disease. This article reports an experiment that investigated the German public's prioritization preferences during the fourth wave of the coronavirus pandemic. In a series of scenarios, (...) participants were asked to decide on ICU admission for patients who differed in terms of health condition, expected treatment benefits, and vaccination status. The results reveal an in-group bias, as vaccinated individuals preferred to allocate more resources to the vaccinated than to the unvaccinated. Participants also favored admitting a heart attack patient rather than a COVID-19 patient with the same likelihood of benefiting from ICU admission, indicating a preference for maintaining regular ICU services rather than treating those with severe COVID-19. Finally, participants were more likely to admit a patient to intensive care when this meant withholding rather than withdrawing care from another patient. The results indicate that lay prioritizations violate established allocation principles, presaging potential conflicts between those in need of intensive care and those who provide and allocate it. It is therefore recommended that allocation principles should be explained to enhance public understanding. Additionally, vaccination rates should be increased to relieve ICUs and reduce the need for such triage decisions. (shrink)

Fair allocation of scarce healthcare resources has been much studied within philosophy and bioethics, but analysis has focused on a narrow range of cases. The Covid-19 pandemic provided significant new challenges, making powerfully visible the extent to which health systems can be fragile, and how scarcities within crucial elements of interlinked care pathways can lead to cascading failures. Health system resilience, while previously a key topic in global health, can now be seen to be a vital (...) concern in high-income countries too. Unfortunately, mainstream philosophical approaches to the ethics of rationing and prioritisation provide little guidance for these new problems of scarcity. Indeed, the cascading failures were arguably exacerbated by earlier attempts to make health systems leaner and more efficient. This paper argues that health systems should move from simple and atomistic approaches to measuring effectiveness to approaches that are holistic both in focusing on performance at the level of the health system as a whole, and also in incorporating a wider range of ethical concerns in thinking about what makes a health system good. (shrink)

BackgroundHumanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care—a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance (...) was available. In 2018, the WHO released a guide on‘Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises’—the first guidance on the topic by an international body.AimsThis paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances.ImplicationsIn parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance. (shrink)

In 2006, a WHO survey found evidence of a substantial increase in patient-led litigation against health authorities and funders over access to medicines around the world. New Zealanders have seldom litigated denials of access to health care. Part of the explanation lies in the fact that New Zealand has a legislated patients' "bill of rights", with enforcement through a complaints mechanism. Although the separate regime does not afford patients substantive legal protection in respect of complaints about lack (...) of access to care, this form of alternative, low-level resolution of health care disputes does condition disgruntled patients not to turn to the courts for legal redress in relation to their rights. But given the increasing need for prioritization arising from serious concern about the sustainability of the public health system, as well as a trend towards greater explicitness when it occurs, increased disappointment on behalf of patients and the public when care is denied or limited seems inevitable. This may well translate into increased patient-led litigation against health boards and funders. Part 1 provides an overview of the New Zealand health system, with a focus on the points at which resource allocation decisions are made, the identity of the decision-maker, and the methods by which priority-setting occurs. Part 1.1 describes inequalities between population groups in New Zealand, both in health outcomes and in access to health care. Part 2 describes the legal framework surrounding the health and disability sector, and discusses the lack of legislated rights to health and the limited right of access to health care in legislation, despite the existence of a legally enforceable Code of Health and Disability Services Consumers' Rights. (shrink)

Gils-Schmidt and Salloch recognise that human and climate health are inextricably linked, and that mitigating healthcare-associated climate harms is essential for protecting human health.1 They argue that physicians have a duty to consider how their own practices contribute to climate change, including during their interactions with patients. Acknowledging the potential for conflicts between this duty and the provision of individual patient care, they propose the application of Korsgaard’s neo-Kantian account of practical identities to help navigate such scenarios. (...) In this commentary, we argue that by focusing attention on this physician–patient level, the authors overlook the complexity of climate change, both within the healthcare sector and beyond. We recognise the importance of individual agency in tackling this issue, and we also recognise that the authors do briefly acknowledge the importance of considering these broader complexities; however, we emphasise the need for climate and health discussions/action to be situated in a wider framework of systemic change. Our concern is that overemphasis on patient-level interactions risks normalising the prioritisation of individual-level approaches to addressing climate change, detracting from such a broader approach. Physician training emphasises the need for trust, confidentiality and shared decision-making in the doctor–patient relationship. …. (shrink)

The Oregon Health Plan gained national attention by changing the focus of health care from who is covered to what is covered. This change was facilitated by insurance reforms in the areas of small market, employer mandates, high risk pooling and Medicaid. Most controversial of the reforms is the use by the legislature of a prioritized list of health services to determine benefit levels for the insurance programs. Significant debate has occured over whether the use of (...) such a list is rationing or reasoning. The Oregon Health Plan represents a thoughtful and deliberate blending of fact with public value for the purpose of responsible health policy. It is that unique blending of public values developed through community participation with fact that focused the attention of the world on Oregon. Keywords: community participation, employer mandates, health care reform, prioritization, rationing, small market insurance reform CiteULike Connotea Del.icio.us What's this? (shrink)

The COVID-19 pandemic brought about at least two normative challenges on unprecedented scale for liberal democracies. One concerned prioritization decisions when health care resources were constrained. The other, which arguably led to lasting damage to social cohesion and citizens’ trust in government and government public health institutions, concerned policies introduced with the aim of reducing the spread of SARS-CoV2, some of which turned out to be mistaken. I discuss in this essay a few examples of misguided, (...) liberty-limiting public health policies and describe how public health and public health ethics principlism provided cover for such policies. Citizens had reasons to be concerned about the duration of such liberty-infringing policies, the absence of predictable government policies, and the absence of transparent justifications for the policies that were implemented. (shrink)

The allocation of critical care resources and triaging patients garnered a great deal of attention during the COVID-19 pandemic, but there is a paucity of guidance regarding the ethical aspects of resource allocation and patient prioritization in ‘normal’ circumstances for Canadian healthcare systems. One context where allocation and prioritization decisions are required are surgical waitlists, which have been globally exacerbated due to the COVID-19 pandemic. In this paper, we detail the process used to develop an ethics framework (...) to support prioritization for elective surgery at The Hospital for Sick Children, Toronto, a tertiary pediatric hospital. Our goal was to provide guidance for the more value-laden aspects of prioritization, particularly when clinical urgency alone is insufficient to dictate priority. With this goal in mind, we worked to capture familial, relational, and equity considerations. As part of our institution’s concerted efforts to ethically and effectively address our surgical backlog, an ethics working group was formed comprising clinicians from surgery, anesthesiology, intensive care, a hospital bioethicist, a parent advisor, and an academic bioethics researcher. A reflective equilibrium process was used to develop an ethics framework. To this end, the same methodology was used to create a support for patient prioritization that identifies clinically and morally relevant factors for prioritization among medically similar surgical cases, with a substantive goal being to identify and redress health inequities in surgical prioritization, inasmuch as this is possible. While further steps are needed to validate several aspects of the framework, our research suggests that an ethics framework grounded in the practical realities of hospital operations provides consistency, transparency, and needed support for decisions that are often left to individual clinicians, as well as an opportunity to reflect upon the presence of health inequities in all domains of healthcare delivery. (shrink)

The dominant methodology in health policy for prioritizing and rationing health care resources is cost-effectiveness analysis, typically using quality adjusted life years (QALYs) or disability adjusted life years (DALYs) to measure health outcomes. The construction of these measures involves a number of moral or value choices, including: How should states of health and disability be evaluated, and whose preferences (e.g., the disabled or non-disabled) should be used? How should these evaluations reflect that prioritization will (...) involve tradeoffs between health benefits for different persons or groups? Do all QALYs count equally, no matter what age at which they are received? Should discount rates be applied to health benefits? I will show the nature of the moral issues at stake in answering these questions, and briefly argue how they should be answered. (shrink)

ObjectivesDuring the COVID-19 pandemic, healthcare resources including staff were diverted from paediatric services to support COVID-positive adult patients. Hospital visiting restrictions and reductions in face-to-face paediatric care were also enforced. We investigated the impact of service changes during the first wave of the pandemic on children and young people (CYP), to inform recommendations for maintaining their care during future pandemics.DesignA multi-centre service evaluation was performed through a survey of consultant paediatricians working within the North Thames Paediatric Network, a (...) group of paediatric services in London. We investigated six areas: redeployment, visiting restrictions, patient safety, vulnerable children, virtual care and ethical issues.ResultsSurvey responses were received from 47 paediatricians across six National Health Service Trusts. Children's right to health was largely believed to be compromised by the prioritisation of adults during the pandemic (81%; n = 33). Sub-optimal paediatric care due to redeployment (61%; n = 28) and the impact of visiting restrictions on CYP's mental health (79%; n = 37) were reported. Decreased hospital attendances of CYP were associated with parental fear of COVID-19 infection-risks (96%; n = 45) and government ‘stay at home’ advice (89%; n = 42). Reductions in face-to-face care were noted to have disadvantaged those with complex needs, disabilities and safeguarding concerns.ConclusionConsultant paediatricians perceived that paediatric care was compromised during the first wave of the pandemic, resulting in harm to children. This harm must be minimised in subsequent pandemics. Recommendations for future practice which were developed from our findings are provided, including maintaining face-to-face care for vulnerable children. (shrink)

Although considerable attention has been devoted to the concepts of “visible” and “invisible” victims in general medical practice, especially in relation to resource allocation, far less consideration has been devoted to these concepts in behavioral health. Distinctive features of mental health care in the United States help explain this gap. This essay explores three specific ways in which the American mental health care system protects potentially “visible” individuals at the expense of “invisible victims” and otherwise (...) fails to meet the needs of great numbers of people with serious psychiatric conditions: prioritization of the wrong patients, incentivization of excessive caution among providers, and a narrow definition of psychiatry's purview. While each of these practices has been discussed elsewhere in the literature, they are rarely considered as part of an interrelated and systemic problem. Reconceptualizing these three issues as aspects of the larger conflict between the interests of “visible” and “invisible” victims may prove a path toward reform. (shrink)

The COVID-19 pandemic has helped to clarify the fair and equitable allocation of scarce medical resources, both within and among countries. The ethical allocation of such resources entails a three-step process: (1) elucidating the fundamental ethical values for allocation, (2) using these values to delineate priority tiers for scarce resources, and (3) implementing the prioritisation to faithfully realise the fundamental values. Myriad reports and assessments have elucidated five core substantive values for ethical allocation: maximising benefits and minimising harms, mitigating unfair (...) disadvantage, equal moral concern, reciprocity, and instrumental value. These values are universal. None of the values are sufficient alone, and their relative weight and application will vary by context. In addition, there are procedural principles such as transparency, engagement, and evidence-responsiveness. Prioritising instrumental value and minimising harms during the COVID-19 pandemic led to widespread agreement on priority tiers to include health-care workers, first responders, people living in congregate housing, and people with an increased risk of death, such as older adults and individuals with medical conditions. However, the pandemic also revealed problems with the implementation of these values and priority tiers, such as allocation on the basis of population rather than COVID-19 burden, and passive allocation that exacerbated disparities by requiring recipients to spend time booking and travelling to appointments. This ethical framework should be the starting point for the allocation of scarce medical resources in future pandemics and other public health conditions. For instance, allocation of the new malaria vaccine among sub-Saharan African countries should be based not on reciprocity to countries that participated in research, but on maximally reducing serious illness and deaths, especially among infants and children. (shrink)

The aim was to synthesize the findings of empirical research about the unmet nursing care needs of older people, mainly from their point of view, from all settings, focusing on (1) methodological approaches, (2) relevant concepts and terminology and (3) type, nature and ethical issues raised in the investigations. A scoping review after Arksey and O’Malley. Two electronic databases, MEDLINE/PubMed and CINAHL (from earliest to December 2019) were used. Systematic search protocol was developed using several terms for unmet (...) class='Hi'>care needs and missed care. Using a three-step retrieval process, peer-reviewed, empirical studies concerning the unmet care needs of older people in care settings, published in English were included. An inductive content analysis was used to analyse the results of the included studies (n = 53). The most frequently used investigation method was the questionnaire survey seeking the opinions of older people, informal caregivers or healthcare professionals. The unmet care needs identified using the World Health Organization classification were categorized as physical, psychosocial and spiritual, and mostly described individuals’ experiences, though some discussed unmet care needs at an organizational level. The ethical issues raised related to the clinical prioritization of tasks associated with failing to carry out nursing care activities needed. The unmet care needs highlighted in this review are related to poor patient outcomes. The needs of institutionalized older patients remain under-diagnosed and thus, untreated. Negative care outcomes generate a range of serious practical issues for older people in care institutions, which, in turn, raises ethical issues that need to be addressed. Unmet care needs may lead to marginalization, discrimination and inequality in care and service delivery. Further studies are required about patients’ expectations when they are admitted to hospital settings, or training of nurses in terms of understanding the complex needs of older persons. (shrink)

Background The emerging working conditions triggered by the COVID-19 pandemic have imposed numerous ethical challenges on the nurses, which, in turn, can negatively impact the nurses’ physical and mental health, and thus their work performance through intensifying negative emotions and psychological pressures. Aim The purpose of this study was to highlight the nurses’ perceptions of the ethical challenges that they faced regarding their self-care during the COVID-19 pandemic. Research design A qualitative, descriptive study with a content analysis approach. (...) Participants and research context The data were collected through semi-structured interviews with 19 nurses working in the COVID-19 wards of two university-affiliated hospitals. These nurses were selected using a purposive sampling method and the data were analyzed using a content analysis approach. Ethical considerations The study was approved by the TUMS Research Council Ethics Committee under the code: IR.TUMS.VCR.REC.1399.594. In addition, it is based on the participants’ informed consent and confidentiality. Findings Two themes and five sub-themes were identified, including ethical conflicts (the conflict between self-care and comprehensive patient care, prioritization of life, and inadequate care) and inequalities (intra- and inter-professional inequalities). Conclusion The findings demonstrated that the nurses’ care is a prerequisite for the patients’ care. Considering that the ethical challenges faced by nurses are related to unacceptable working conditions, organizational support, and lack of access to facilities such as personal protective equipment, it seems essential to support nurses and provide adequate working conditions to provide patients with quality care. (shrink)

The Social Value Judgments consultation document reveals NICE’s failure to understand its role in healthcare prioritisationThe National Institute for Health and Clinical Excellence has published a draft guideline, Social Value Judgments: Guidelines for the Institute and its Advisory Bodies , which outlines the ethical framework that will guide its decision making in the future.1 NICE guidance has a profound effect upon the delivery of health care within the National Health Service so it is crucial that an (...) overarching guideline such as this is suited to the task that it needs to perform. In this paper we argue that NICE has misunderstood the way in which its advice fits into prioritisation decisions. This misunderstanding is amplified by its views about the ethical principles that should apply to prioritisation and, in particular, its failure to appreciate the role of fair processes in prioritisation.The national and international standing of NICE means that the definitive version of Social Value Judgments: Guidelines for the Institute and its Advisory Bodies is likely to have influence beyond the institute itself. There is much to welcome about the document, not least the acknowledgement that there are important ethical dimensions to NICE’s decision making. Indeed, the significance of the document lies in the fact that NICE is attempting to create an explicit ethical framework for funding decisions.There is, however, much that is of concern. Although John Harris has made some important points about the NICE position on age and sex,2 there are other important problems that need to be discussed. First, there appears to be confusion over the nature of the funding decisions taken by NICE and, as a result, the role of its guideline. It is of vital importance that professionals and public alike understand the precise nature of …. (shrink)

The prioritisation of scarce resources has a particular urgency within the context of the COVID‐19 pandemic crisis. This paper sets out a hypothetical case of Patient X (who is a nurse) and Patient Y (who is a non‐health care worker). They are both in need of a ventilator due to COVID‐19 with the same clinical situation and expected outcomes. However, there is only one ventilator available. In addressing the question of who should get priority, the proposal is made (...) that the answer may lie in how the pandemic is metaphorically described using military terms. If nursing is understood to take place at the ‘frontline’ in the ‘battle’ against COVID‐19, a principle of military medical ethics—namely the principle of salvage—can offer guidance on how to prioritise access to a life‐saving resource in such a situation. This principle of salvage purports a moral direction to return wounded soldiers back to duty on the battlefield. Applying this principle to the hypothetical case, this paper proposes that Patient X (who is a nurse) should get priority of access to the ventilator so that he/she can return to the ‘frontline’ in the fight against COVID‐19. (shrink)