This chapter contains sections titled: Determinants of Health Who, If Anyone, Allocates Health Resources? Determining the Share of the Overall Budget To Be Devoted to Health Allocation Within the Budget for Health Health Needs and Benefits Ethical Issues in Measuring Health Benefits: Quantity and Quality of Life Ethical Issues in the Distribution of Health Benefits Other Principles of Allocation Allocation and Social Justice Democratic Choice Conclusion References Further reading.

Health care systems, irrespective of how they are financed, present the paradox that to some observers they appear as a major component of social benefits, while to other observers they seem both excessively costly and limited in their effectiveness. These differing perceptions may be explained in part by the diversity of the determinants of health and disease, only some of which are amenable to those preventive or therapeutic measures encompassed in a health care system--the majority (...) of determinants being genetic, societal, or else uninfluenced by those interventions at present available within a health service. The share of national resources which should be devoted to health care, and the method of raising resources, are primarily matters for political decision; but a national system has advantages both of economy and of comprehensiveness. But when it comes to allocation of resources within the established health budget, the knowledge and skills of health professionals are essential to informed decision-making. The possibilities depend critically on the 'state of the art' at a given time, as is illustrated by the radical changes over time in what could be done for patients with renal failure; and health professionals are likely to be most aware of current options, and of how to choose between them. More speculatively, they are also less likely to confuse the attitudes appropriate to providing a service with those required to run a business. (shrink)

Promoting clinicians’ knowledge sharing of appropriate health technology within the integrated care system is of great vitality in bridging the technological gap between member institutions. However, the role of social networks in knowledge sharing of health technology is still largely unknown. To address this issue, the study aims to clarify the influence of clinicians’ social networks on knowledge sharing of health technology within the ICS. A questionnaire survey was conducted among the clinicians in the Alliance of (...) Liver Disease Specialists in Fujian Province, China. Social network analysis was conducted using NetDraw and UCINET, and the quadratic assignment procedure multiple regression was used to analyze the influencing factors of knowledge sharing of health technology. The results showed that the ICS played an insufficient role in promoting overall knowledge sharing, especially inter-institutional knowledge sharing. Trust, emotional support, material support, and cognitive proximity positively influenced knowledge sharing of health technology, while the frequency of interaction and relationship importance had a negative impact on it. The finding extended the research scope of social network theory to the field of healthcare and will bridge the evidence gap in the influence of the clinicians’ social networks on their knowledge sharing within the ICS, providing new ideas to boost knowledge sharing and diffusion of appropriate health technology. (shrink)

This chapter explores two questions in detail: How should we determine the threshold for costs that individuals are asked to bear through insurance premiums or care-related out-of-pocket costs, including user fees and copayments? and What is an adequate relationship between costs and benefits? This chapter argues that preventing impoverishment is a morally more urgent priority than protecting households against income fluctuations, and that many health insurance plans may not adequately protect individuals from health care costs that (...) threaten to drop their financial status below a decent minimum. A design that places greater emphasis on preventing impoverishment and finances the achievement of that goal by reducing unnecessary subsidies to better-off households would better accord with a sufficientarian approach to health care. -/- . (shrink)

Objective: The COVID-19 epidemic has generated great stress throughout healthcare workers. The situation of HCWs should be fully and timely understood. The aim of this meta-analysis is to determine the psychological impact of COVID-19 pandemic on health care workers.Method: We searched the original literatures published from 1 Nov 2019 to 20 Sep 2020 in electronic databases of PUBMED, EMBASE and WEB OF SCIENCE. Forty-seven studies were included in the meta-analysis with a combined total of 81,277 participants.Results: The pooled (...) prevalence of anxiety is 37% from 44 studies. Depression is estimated in 39 studies, and the pooled prevalence of depression is 36%. There are 10 studies reported the prevalence of insomnia, and the overall prevalence of insomnia is 32%. The subgroup analysis showed a higher incidence of anxiety and depression among women and the frontline HCWs compared to men and non-frontline HCWs respectively.Conclusions: The COVID-19 pandemic has caused heavy psychological impact among healthcare professionals especially women and frontline workers. Timely psychological counseling and intervention ought to be implemented for HCWs in order to alleviate their anxiety and improve their general mental health. (shrink)

Background Increase in global health research undertaken in resource poor settings in the last decade though a positive development has raised ethical concerns relating to potential for exploitation. Some of the suggested strategies to address these concerns include calls for providing universal standards of care, reasonable availability of proven interventions and more recently, promoting the overall social value of research especially in clinical research. Promoting the social value of research has been closely associated with providing fair benefits (...) to various stakeholders involved in research. The debate over what constitutes fair benefits; whether those that addresses micro level issues of justice or those focusing on the key determinants of health at the macro level has continued. This debate has however not benefited from empirical work on what stakeholders consider fair benefits. This study explores practical experiences of stakeholders involved in global health research in Kenya, over what benefits are fair within a developing world context. Methods and results We conducted in-depth interviews with key informants drawn from within the broader health research system in Kenya including researchers from the mainstream health research institutions, networks and universities, teaching hospitals, policy makers, institutional review boards, civil society organisations and community representative groups. The range of benefits articulated by stakeholders addresses both micro and macro level concerns for justice by for instance, seeking to engage with interests of those facilitating research, and the broader systemic issues that make resource poor settings vulnerable to exploitation. We interpret these views to suggest a need for global health research to engage with current crises that face people in these settings as well as the broader systemic issues that produce them. Conclusion Global health research should provide benefits that address both the micro and macro level issues of justice in order to forestall exploitation. Embracing the two is however challenging in terms of how the various competing interests/needs should be balanced ethically, especially in the absence of structures to guide the process. This challenge should point to the need for greater dialogue to facilitate value clarification among stakeholders. (shrink)

In the majority of academic institutions nursing and medical students receive a traditional education, the content of which tends to be specific to their future roles as health care professionals. In essence, each curriculum design is independent of each course. Over the last decade, however, interest has been accumulating in relation to interprofessional and multiprofessional learning at student level. With the view that learning together during their student training would not only encourage and strengthen future collaboration in practice (...) settings but also enhance patient care, the University of Dundee decided to run a pilot study to explore shared teaching in ethics between medical and nursing students. This article presents a report on the reasons for selecting health care ethics as a precursor for shared teaching, the educational tool used for the sessions, and the results of student and facilitator evaluation of the short course. Overall, despite problems such as poor attendance by some students, and facilitation and timetable difficulties, most of the feedback from students and facilitators has been positive. In essence the ‘idea’ has gone from strength to strength and there are now three levels of shared teaching in ethics between nursing and medical students, with plans to include further sessions with students from other disciplines. Within the text, ‘health care ethics’ will be referred to as ‘ethics’; nursing students/nurses encompasses midwifery students/midwives. (shrink)

Against a backdrop of non-ideal political and legal conditions, this article examines the health capability paradigm and how its principles can help determine what aspects of health care might legitimately constitute positive health care rights—and if indeed human rights are even the best approach to equitable health care provision. This article addresses the long American preoccupation with negative rights rather than positive rights in health care. Positive health care rights (...) are an exception to the overall moral range and general thrust of U.S. legal doctrine. Some positive rights to health care have arisen from U.S. Constitutional Eighth Amendment cases and federal and state laws like Medicare, Medicaid, the State Children’s Health Insurance Program, the Emergency Medical Treatment and Active Labor Act, and the Patient Protection and Affordable Care Act. Finally, this article discusses some of the difficulties inherent in implementing a positive right to health care in the U.S. (shrink)

In the majority of academic institutions nursing and medical students receive a traditional education, the content of which tends to be specific to their future roles as health care professionals. In essence, each curriculum design is independent of each course. Over the last decade, however, interest has been accumulating in relation to interprofessional and multiprofessional learning at student level. With the view that learning together during their student training would not only encourage and strengthen future collaboration in practice (...) settings but also enhance patient care, the University of Dundee decided to run a pilot study to explore shared teaching in ethics between medical and nursing students. This article presents a report on the reasons for selecting health care ethics as a precursor for shared teaching, the educational tool used for the sessions, and the results of student and facilitator evaluation of the short course. Overall, despite problems such as poor attendance by some students, and facilitation and timetable difficulties, most of the feedback from students and facilitators has been positive. In essence the ‘idea’ has gone from strength to strength and there are now three levels of shared teaching in ethics between nursing and medical students, with plans to include further sessions with students from other disciplines. Within the text, ‘health care ethics’ will be referred to as ‘ethics’; nursing students/nurses encompasses midwifery students/midwives. (shrink)

How can researchers use race, as they do now, to conduct health-care studies when its very definition is in question? The belief that race is a social construct without “biological authenticity” though widely shared across disciplines in social science is not subscribed to by traditional science. Yet with an interdisciplinary approach, the two horns of the social construct/genetics dilemma of race are not mutually exclusive. We can use traditional science to provide a rigorous framework and use a social-science (...) approach so that “invisible” factors are used to adjust the design of studies on an as-needed basis. One approach is to first observe health-care outcomes and then categorize the outcomes, thus removing genetic differences as racial proxies from the design of the study. From the outcomes, we can then determine if there is a pattern of conceivable racial categories. If needed, we can apply dynamic notions of race to acknowledge bias without prejudice. We can use them constructively to improve outcomes and reduce racial disparities. Another approach is nearly identical but considers race not at all: While analyzing outcomes, we can determine if there are biological differences significant enough to identify classifications of humans. That is, we look for genetic patterns in the outcomes and classify only those patterns. There is no attempt to link those patterns to race. (shrink)

A serious moral weakness of reproductive ‘surrogacy’ is that it can be harmful to the children who are created. This article presents a proposal for mitigating this weakness. Currently, the practice of commercial ‘surrogacy’ operates only in the interests of the adults involved , not in the interests of the child who is created. Whether ‘surrogacy’ is seen as the purchase of a baby, the purchase of parental rights, or the purchase of reproductive labor, all three views share the (...) same significant flaws. They endorse the transfer, for a fee, of the infant from the woman who gestated it to those who commissioned it, but without justifying such a transfer; they fail to demonstrate that the commissioners have any entitlement to the infant, or, for that matter, suitability to be the infant's parents; and they fail to take any notice of the infant's needs, interests, and wellbeing. A mere genetic connection is not enough to establish that the commissioners are entitled to receive the baby or that they are competent to raise it. Their good intentions, however caring, are not enough. Therefore, just as in the practice of adoption, there should be a formal institutionalized system for screening and licensing the prospective social parents, which would make the infant's needs, interests, and wellbeing paramount. I reply to several potential objections to this proposal, including the objection that genetic parents who raise their own child are not screened and licensed. (shrink)

As a university professor, an environmentalist, and a world-traveller, Sue Hendler was thriving. Then she was diagnosed with metastatic breast cancer. She had to give up her job, make hard decisions about medical treatment, and drastically shorten her vision of the future. As her cancer spread, she ironically acquired a new identity as a cancer "survivor." Compelled to find meaning in her "new normal" of life with a fatal disease, she decided to write for a wider audience. In Dying in (...) Public: Living with Metastatic Breast Cancer, Hendler talks about her experiences of undergoing surgery, taking steroids, receiving chemotherapy, and enrolling in a clinical drug trial. As her condition worsens she remains committed to living fully. She struggles with writing a bucket list, discusses her "legacy," and talks about her feelings of anger and the importance of love. She also describes how she lived, towards the end, with the support of the members of her "Care Team," a group of over thirty friends, family, and health care workers who enabled her to remain at home until the day before her death. This honest, witty, and unsentimental depiction of "dying in public" is a profound tribute to a life well lived. (shrink)

Background: This article describes the overall attitudes of children, their parents, and attending physicians toward including or excluding pediatric patients in medical communication and health care decision-making processes. Methods: Fifty-two interviews were carried out with pediatric patients (n = 17), their parents (n = 19), and attending oncologists (n = 16) in eight Swiss pediatric oncology centers. The interviews were analyzed using thematic coding. Results: Parenting styles, the child's personality, and maturity are factors that have a great (...) impact upon the inclusion of children in their health care processes. Children reported the desire to be heard and involved, but they did not want to dominate the decision-making process. Ensuring trust in the parent–child and physician–patient relationships and respecting the child as the affected person were important values determining children's involvement. These two considerations were closely connected with the concern that fantasies are often worse than reality. Seeking children's compliance with treatment was a practical but critical reason for informing them about their health care. The urge to protect them from upsetting news sometimes resulted in their (partial) exclusion. Conclusions: The ethical imperative for inclusion of children in their health care choices was not so much determined by the right for self-determination, but by the need to include them. If children are excluded, they imagine things, become more isolated, and are left alone with their fears. Nevertheless, the urge to protect children is innate, as adults often underestimate children's coping capacities. (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)

Partially because of the high cost of developing and maintaining cold chains, systems needed to keep heat-labile vaccines under adequate refrigeration from their points of manufacture to their administration in the field, the Joint WHO/FAO Expert Committee on Zoonoses (i.e., the approximately four fifths of all described human infections that people share with other vertebrate animals) recommended in 1982 operation of common cold chains by health and veterinary services in rural areas. Following this recommendation, a 1984 pilot level (...) initiative in medical-veterinary intersectoral cooperation should be regarded as a practical way to deliver human primary health care to currently neglected African pastoralists, and as a potential core program for development efforts overall within arid and semiarid areas of the African continent. (shrink)

Poland has faced two waves of migration: the first was of irregular asylum seekers, which led to the humanitarian crisis on the eastern EU–Belarusian border since 2021; the second was of Ukrainians fleeing the Russian invasion. Although there are noticeable differences between these situations, and between the different reactions of the Polish authorities, it is possible to juxtapose them in terms of the right to health. The normative content of refugee and human rights law is the starting point for (...) reconstructing the meaning of the terms ‘refugee’ and ‘right to health’. A refugee is a person who needs international protection because of a well-founded fear of harm, which is not limited to persecution as defined by the Refugee Convention but also includes situations of international and non-international armed conflict. The right to health, which includes, inter alia, entitlements to a ‘system of health protection’ and ‘underlying determinations of health’, is reconstructed on the basis of human rights law and refugee and migration law. There are no legal and moral grounds to grant the right to health differentially to different groups of refugees. Nondiscriminatory health policy requires that refugees have the same access to health care as nationals, although their specific health needs resulting from past experiences and refugee situation require special treatment, that is, an appropriate refugee health policy. The broad understanding of the underlying determinants of health demonstrates the importance of overall migration policy for refugees’ health, which can jeopardise the fragile good of refugee health. (shrink)

Health care reform is an important issue in the 2004 presidential elections and is receiving serious attention from the Democratic and Republican candidates. Changes in the economy that fuelled increased productivity and depressed job growth have also shifted more of the costs of medical care and insurance onto employees. The rising costs of insurance premiums and health care are far outpacing the general inflation rate and workers’ wages. Meanwhile, state governments reacted to widening budget deficits (...) from 2001 to 2003 by reducing Medicaid eligibility and benefits. These changes in employer-based health insurance and government policy have contributed to the largest rise in the share of Americans without health insurance in a decade. In 2002, the uninsured numbered 43.6 million and, according to the Congressional Budget Office, 57 to 59 million non-elderly people are uninsured at some point over the course of a year. (shrink)

Political philosophers often formulate the problem of distributive justice as the problem of how the government ought to distribute different types of goods—for example, income or health care—to its citizens. They therefore presuppose that the government is a unitary agent that governs its citizens directly. However, although a number of governments are unitary in this way, many are federations, exhibiting a division of sovereignty between two or more levels of government having independent grounds of authority. In contrast to (...) unitary states, therefore, within a federation, two or more levels of government directly govern their citizens and are directly accountable to them. Because of the way in which different levels of government in a federation can separately affect the distribution of goods in society, federations face resource allocation problems that are far more complex than those of unitary states. In addition to determining what a just distribution of goods is, federations must also determine (1) whether distributive justice is a shared responsibility amongst different levels of government, and, if so, (2) how this shared responsibility should be allocated between them. (shrink)

In all western countries health care budgets are under considerable constraint and therefore a reflection process has started on how to gain the most health benefit for the population within limited resource boundaries. The field of ethics of resource allocation has evolved only recently in order to bring some objectivity and rationality in the discussion. In this article it is argued that priority setting is the prerequisite of ethical resource allocation and that for purposes of operationalization, (...) instruments such as need assessment and health technology assessment (HTA) are essential worktools for making more rational decisions. Thresholds (deduced from the need assessment and HTA) are - within this context - guiding but not binding principles. -/- Discussion of theoretical concepts of not only priority setting, need assessment and HTA complemented by practical examples for showing the challenges and the need, but also the chances of a more explicit and transparent policy of resource allocation in health care. Results: Priority setting in health care is based on the values of equity, justice and solidarity. Health packages decisions are determined from medical need (the severity of the condition) and/or the appropriateness of medical interventions (their cost-effectiveness). With growing awareness that originally effective and cost-effective services and programmes are eventually provided inappropriately, the focus is shifting towards the organisational aspects of provision and application. Therefore, need assessment is based on the distinction of health care needs from demand, supply, or actual care. Additionally HTA provides the evidence on health care interventions in a way that it becomes obvious who benefits from an intervention and who definitely does not benefit, but eventually is harmed. -/- Health services research on effective and cost-effective interventions and research/monitoring of performance that the effective and cost-effective services are provided appropriately are of increasing importance for guiding the decision-making process on priority setting and need assessment. Effective healthcare for all is sustainable, if we start to put expenditures in perspective and focus health policies and research strategies on managing expectations through patient information and a more realistic notion of medical advancements and, on the other hand, on encouraging need-based and cost-effective innovations. (shrink)

We have investigated attitudes towards the use of health data among the Swedish population by analyzing data from a survey answered by 1645 persons. Health data are potentially useful for a variety of purposes. Yet information about health remains sensitive. A balance therefore has to be struck between these opposing considerations in a number of contexts. The attitudes among those whose data is concerned will influence the perceived legitimacy of policies regulating health data use. We aimed (...) to investigate what views are held by the general public, and what aspects matter for the willingness to let one’s data be used not only for one’s own care but also for other purposes. We found that while there is a broad willingness to let one’s data be used, the possibility to influence that use is considered important. The study also indicated that when respondents are required to balance different interests, priority is typically given to compulsory schemes ensuring that data are available where needed, rather than voluntary participation and data protection. The policy implications to be drawn from this are not self-evident, however, since the fact that a majority has a certain attitude does not by itself determine the most adequate policy. (shrink)

Many societies, and nearly all wealthy, developed countries, provide universal access to a broad range of public health and personal medical services. Is such access to health care a requirement of social justice, or is it simply a matter of social policy that some countries adopt and others do not? If it is a requirement of social justice, we should be clear about what kinds of care we owe people and how we determine what care (...) is owed if we cannot possibly meet every health need, as arguably no society can. We should be clear about what constitutes appropriate access to that care, given that there are diverse barriers to access. We must also be able to say why we owe these things as a matter of justice, and, of course, different accounts of social justice will bake and serve this cake in different ways. (shrink)

Proposals for health care cost containment emphasize high-value care as a way to control spending without compromising quality. When used in this context, ‘value’ refers to outcomes in relation to cost. To determine where health spending yields the most value, it is necessary to compare the benefits provided by different treatments. While many studies focus narrowly on health gains in assessing value, the notion of benefit is sometimes broadened to include overall quality of life. (...) This paper explores the implications of using subjective quality of life measures for value assessment. This approach is claimed to be more respectful of patients and better capture the perspectival nature of quality of life. Even if this is correct, though, subjective measurement also raises challenging issues of interpersonal comparability when used to study health outcomes. Because such measures do not readily distinguish benefits due to medical interventions from benefits due to personal or other factors, they are not easily applied to the assessment of treatment value. I argue that when the outcome of interest in value assessment is broadened to include quality of life, the cost side of these measures should also be broadened. I show how one philosophical theory of well-being, Jason Raibley’s “agential flourishing” theory, can be adapted for use in quality of life research to better fit the needs and aims of value assessment in health care. Finally, I briefly note some implications of this argument for debates about fairness in health care allocations. (shrink)

In this paper a case is used to demonstrate how ethical analysis enables health care professionals, patients and family members to make treatment decisions which ensure that medical technologies are used in the overall best interests of the patient. The claim is made and defended that ethical analysis can secure four beneficial outcomes when medical technologies are employed: (1) not allowing any medical technologies to be employed until the appropriate decision makers are identified and consulted; (2) insisting (...) that medical technologies be employed not merely to promote the medical interests of the patient but rather on the basis of their ability to contribute to the overall well-being of the patient; (3) challenging caregivers to reflect on the dynamic interplay between their conscious and unconscious values and consequent determinations of what is in the patient's best interests; and (4) providing a justification for selected interventions which makes possible rational dialogue between caregivers espousing different viewpoints about treatment options. (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)

The health care systems are fairly similar in theScandinavian countries. The exact details vary, but inall three countries the system is almost exclusivelypublicly funded through taxation, and most (or all)hospitals are also publicly owned and managed. Thecountries also have a fairly strong primary caresector (even though it varies between the countries),with family physicians to various degrees acting asgatekeepers to specialist services. In Denmark most ofthe GP services are free. For the patient in Norwayand Sweden there are out-of-pocket co-payments (...) for GPconsultations, with upper limits, but consultations forchildren are free. Hospital treatment is free inDenmark while the other countries use a system without-of-pocket co-payment. There is a very strongpublic commitment to access to high quality healthcare for all. Solidarity and equality form theideological basis for the Scandinavian welfare state.Means testing, for instance, has been widely rejectedin the Scandinavian countries on the grounds thatpublic services should not stigmatise any particulargroup. Solidarity also means devoting specialconsideration to the needs of those who have lesschance than others of making their voices heard orexercising their rights. Issues of limited access arenow, however, challenging the thinking about a healthcare system based on solidarity. (shrink)

American bioethics has served as a safety net for the rich and powerful, often failing to protect minorities and the economically disadvantaged. For example, minorities and the economically disadvantaged are often unduly influenced into participating in clinical trials that promise monetary gain or access to health care. This is a violation of the bioethical principle of “respect for persons,” which requires that informed consent for participation in clinical trials is voluntary and free of undue influence. Promises of access (...) to health care invalidate the voluntariness of informed consent not only because it unduly induces minorities and the economically disadvantaged to participate in clinical trials to obtain access to potentially life saving health care, but it is also manipulative because some times the clinical trial is conducted by the very institutions that are denying minorities and the economically disadvantaged access to health care. To measure whether consent is voluntary and free of undue influence, federal agencies should require researchers to use the Vulnerability and Equity Impact Assessment tool, which I have created based on the Health Equity Impact Assessment tool, to determine whether minorities and the economically disadvantaged are being unduly influenced into participating in clinical trials in violation of the “respect for persons” principle. (shrink)

This study describes the results of a retrospective review of patients' charts who had an advanced directive (AD) and who were hospitalized in a tertiary, acute care teaching hospital. The purpose of the review was to understand from clinical, sociological, ethical and legal perspectives the nature and utility of ADs. Findings and implications of the review are discussed in terms of: patient demographics; diagnoses; quality of ADs; influence of ADs on clinical decisions; and legal aspects of ADs.

Background and AimsEnd-of-life discussions can be difficult for seriously ill adolescents and young adults. Researchers aimed to determine whether completing Voicing My CHOiCES —a research-informed advance care planning guide—increased communication with family, friends, or health care providers, and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation (...) quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family and friends reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience, difficult experience, appreciated a guide to facilitate discussion, provided relief, and created worry/anxiety. Only 1 HCP noted a treatment change. Family, friends, and HCP did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult. (shrink)

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities (...) that underlie treatment offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically “non-actionable,” we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients’ comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient’s situation and the underlying considerations shaping health care professionals’ choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person. (shrink)

One generally considered plausible way to allocate resources in health care is according to people’s needs. In this paper I focus on a somewhat overlooked issue, that is the conceptual structure of health care needs. It is argued that what conceptual understanding of needs one has is decisive in the assessment of what qualifies as a health care need and what does not. The aim for this paper is a clarification of the concept of (...) health care need with a starting point in the general philosophical discussion about needs. I outline three approaches to the concept of need and argue that they all share the same conceptual underpinnings. The concept of need is then analyzed in terms of a subject x needing some object y in order to achieve some goal z. I then discuss the relevant features of the object y and the goal z which make a given need qualify as a health care need and not just a need for anything. (shrink)

Political theorists generally defend the moral importance of health care by appealing to its purported importance in promoting good health and saving lives. Recent research on the social determinants of health demonstrates, however, that health care actually does relatively little to promote good health or save lives in comparison with other social and environmental factors. This article assesses the implications of the social determinants of health literature for existing theories of health (...) care justice, and outlines a new approach that can justify publicly subsidized comprehensive health care despite its limited contribution to good health. Even if health care plays a relatively limited role in promoting good health, it remains morally important because of the care it provides to individuals. As such, it can be justified in terms of care ethics. When health care is justified primarily in terms of care rather than health, however, the goals of a just health-care system shift. The measure of a just health-care system is no longer strictly its ability to generate good health outcomes but also its ability to provide individuals with accessible, good quality daily care. This different focus has important consequences for the way we think about the institutions of a just health-care system as well as for the delivery and allocation of medical goods and services. (shrink)

is a review of 5 ethically based healthcare funding models discussed in the literature that are currently used to justify funding choices. If healthcare professionals and managers are better informed about the ethical reasoning behind funding choices, they could better determine which resource allocation alternatives to support. But where should we spend our resources? Although healthcare professionals have a duty to advocate for all healthcare recipients to receive a fair share of resources, the author concludes that our greater duty (...) as a profession is to the good of society as a whole. Balancing allocation decisions by considering all of the competing healthcare funding models and the ethical bases for them is suggested rather than to advocate too strongly for favored models.... (shrink)

During the last decades, shared decision making (SDM) has become a very popular model for the physician-patient relationship. SDM can refer to a process (making a decision in a shared way) and a product (making a shared decision). In the literature, by far most attention is devoted to the process. In this paper, I investigate the product, wondering what is involved by a medical decision being shared. I argue that the degree to which a decision to implement a medical (...) alternative is shared should be determined by taking into account six considerations: (i) how the physician and the patient rank that alternative, (ii) the individual preference scores the physician and the patient (would) assign to that alternative, (iii) the similarity of the preference scores, (iv) the similarity of the rankings, (v) the total concession size, and (vi) the similarity of the concession sizes. I explain why shared medical decisions are valuable, and sketch implications of the analysis for the physician-patient relationship. (shrink)

The U.S. 2010 Patient Protection and Affordable Care Act exempts members of health care sharing ministries from the individual mandate to have minimum essential insurance coverage. Little is generally known about these religious organizations and even less critical attention has been brought to bear on them and their ACA exemption. Both deserve close scrutiny due to the exemption’s less than clear legislative justification, their potential influence on the ACA’s policy and ethical success, and their salience to current (...) religious liberty debates surrounding the expansion of religious exemptions from ACA responsibilities for both individuals and corporations. Analyzing documents of the United States’ three largest health care sharing ministries and related material, I examine these organizations and their ACA exemption with particular consideration of their ethical dimensions. Here a thick description of the nature and workings of health care sharing ministries precedes a similar account of the ACA exemption. From these empirical analyses, five ethical and policy concerns emerge: the charity versus insurance status of these ministries; the conflation of two ACA religious exemptions; the tension between the values of religious liberty and of justice; the potential undermining of ACA policy goals; and the questionable compliance of health care sharing ministries with ACA exemption requirements. An accurate and informed understanding of HCSMs is required for policymakers and others to justify the ACA exemption of health care sharing ministry members. A sufficient justification would address at least the five ethical and policy concerns raised here. (shrink)

American adults currently enjoy a widely accepted and legally well-settled right to refuse health care, including life sustaining treatment. Joel Feinberg provides a moral foundation for this right in liberal political theory. Feinberg's theory grounds the right to refuse in a broad right to self-determination, and it implements the right through a variable conception of voluntariness. This theory provides a plausible account that comports with the widely accepted right to refuse, commonsense, and ordinary practice. -/- Allen Buchanan and (...) Dan Brock contend, however, that Feinberg's priority for the right to self-determination is inconsistent with his variable scale of voluntariness. Although Feinberg presents his theory as one that grants categorical priority to self-determination over individual well-being, Buchanan and Brock argue that Feinberg's variable scale of voluntariness involves a balancing of self-determination and well-being. This balancing approach, which Buchanan and Brock endorse, seems to undermine the competent patient's right to refuse care because it allows concern for the patient's well-being to override that person's right to self-determination in some circumstances. Taken together, these arguments seem to suggest that we must give up either the competent patient's right to refuse treatment or the intuitively sensible variable scale. -/- In this paper, I argue that one can reconcile a categorical priority for self-determination with legal rules that incorporate a variable scale of competence. This integration requires careful examination of the practical and expressive functions of legal rules as well as of the manner in which these rules embody moral priorities. This analysis pursues specific and general projects. Specifically, it addresses the moral foundations of the legal right to refuse treatment, identifying a substantive difference between the balancing approach and the priority for self-determination that characterizes Feinberg's liberalism. Generally, it examines the types of priorities embodied by legal rules as practical decision guides and as expressions of the conventional morality represented by the law. This general project extends beyond the right to refuse treatment to the analysis of the manner in which legal rules express and apply moral priorities. (shrink)

The objective of the paper is to explore the issue that despite the absence of adequate formal and systematic ways for the poor and disadvantaged people to get access to health benefit like in a rich liberal society, there are active social customs, feelings and individual and collective responsibilities among the people that help the disadvantaged and poor people to have access to the minimum health care facility in both liberal and non-liberal poor countries. In order to (...) explain the importance and functional contribution of the social norms in this respect, some examples will be illustrated from Bangladesh which is a poor liberal country. There will be two sections of the paper. In the first section, it will be exhibited how the naturally and socially disadvantaged people in a liberal society get benefit following Rawls‟ theory of distributive justice. In the second section, it will be showed that in a poor country where there are less resources of the government to provide enough services to the poor and disadvantaged people, the communal feelings and the informal social institutions play a vital role that helps the disadvantaged and poor people to get access to the health benefit. The traditional social norms impose indirect sanction on its people to come forward to help the worse off people of the country. It is depicted that Rawlsian theory of distribution does not work properly in these countries, rather the communitarian feelings is more welcomed for the benefit of the overall welfare of the society and this will be shown in the conclusion of the paper. (shrink)

Do people who cause themselves to be ill (e.g. by smoking) forfeit some of their rights to healthcare? This paper examines one argument for the view that they do, the restoration argument. It goes as follows. Smokers need more health‐resources than non‐smokers. Given limited budgets, we must choose between treating everyone equally (according to need) or reducing smokers' entitlements. If we choose the former, non‐smokers will be harmed by others' smoking, because there will be less resources available for (...) them than if no‐one smoked. This is unfair: why should non‐smokers suffer because of others' unhealthy lifestyle choices? We should therefore choose the latter and reduce smokers' entitlements. This paper criticises the restoration argument on the following grounds. In order to avoid generating unpalatable conclusions elsewhere, it must be combined with a principle according to which activities which are sufficiently ‘socially valuable’ (e.g. parenting) are immune from restoration claims. This however means that what was supposed to be one of the argument's most attractive features, its compatibility with ‘liberal neutrality’ with respect to the value of different lifestyles, doesn't really exist. Hence, the restoration argument is nowhere near as attractive as it at first appears to be. (shrink)

People across cultures consider everyday choices in the context of perceived various external life-determining forces: such as fate and gods (two teleological forces) and such notions as luck and chance (two non-teleological forces). There is little cross-cultural evidence (except for a belief in gods) showing how people relate these salient notions of life-determining forces to prosociality and a sense of well-being. The current paper provides preliminary cross-cultural data to address this gap. Results indicate that choice is the most (...) important life-determining factor. Regression analyses indicate that choice and belief in gods and fate emerged as significant predictors of prosociality towards strangers. Moreover, luck was a significant predictor of decreased prosociality. A relation between life-determining forces and life satisfaction followed the same pattern: choice, gods, and fate emerged as significant predictors of greater life satisfaction, whereas luck was associated with decreased life satisfaction. The overall pattern of results indicates that participants across different cultures might sense being bounded to share or not to care depending on the perceived intentional agency and meaning in the external forces. (shrink)

This book proposes an alternative to the consent model which is currently at the heart of patient self-determination and which is shown here to have fundamental flaws that constrain its effectiveness. The proposed model is a property model in which the patient’s bodily integrity is protected from unauthorised invasion, and their legitimate expectation to be provided with the relevant information to make an informed decision is taken to be a proprietary right. This model enables the courts to overcome the requirement (...) to prove causation in consent cases and offers a complementary approach to patient self-determination. (shrink)

While it is true that health care costs are straining personal and governmental budgets, it does appear to be a manageable problem. There are tools available to moderate costs, efforts are already underway to control costs by modifying the financing of health care. Whether or not these will be effective remains to be seen. There also are efforts to control costs by modifying unhealthy habits. These efforts are showing notable success. Moreover, there are efforts underway (...) to reduce health care costs by altering the overall context of people's lives. This latter effort—to improve the health of whole communities—holds the greatest promise. (shrink)

This paper firstly distinguishes between principles of “global justice” that apply the same anywhere and everywhere – Tännsjö’s utilitarianism, egalitarianism, prioritarianism and such like – and principles of “local justice” that apply within the specific sphere of health-care. Sometimes the latter might just be a special case of the former – but not always. Secondly, it discusses reasons, many psychological in nature, why physicians might devote excessive resources to prolonging life pointlessly, showing once again that those reasons might (...) themselves be morally significant. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Working on the Clinton Administration's Health Care Reform Task ForceNancy Neveloff Dubler (bio)This narrative is based on my understanding of the elements of the Health Security Act that may have ethical implications. I have reconstructed these elements from my experience on the Health Care Reform Task Force and they are part of the health care plan that the President presented to Congress. (...) (At the time this article went to press, the actual legislation, which should answer my remaining specific questions more clearly, had not yet been released.) I perceive the most important features of the plan to be:• The legislation will create a "right" to health care for all citizens—access to care will be universal;• The plan will involve some form of managed competition in which groups of providers (called Approved or Accredited Health Plans (AHPs)) will offer comparable benefit packages at slightly (or widely) different costs;• The AHPs will negotiate with the Health Alliance (HA) to determine the price that they will charge their consumer-patients;• There will be open enrollment with no barriers to coverage, such as exclusions for pre-existing conditions;• Community rating will be in effect in different localities and enrolled persons in any AHP will pay the same premium;• The coverage for any enrolled person will be portable;• The overall structure will be a cooperative federal/state enterprise in which the states will have quite extensive abilities to fashion variations of the basic plan to meet their particular needs;• Primary care will be encouraged and incentives for physicians to train in primary care specialties provided;• Non-physician providers will be central to the functioning of the health care plans;• Efforts will be made to develop a "person power" pool so that people with an abstract "right" to health care will have real access to providers, in their localities, who can fulfill the promise that the right creates; [End Page 421]• The goal of cost containment will be central to the organization and regulation of the system;• Administrative simplicity and quality protections will be central.Co-chairing the Bioethics Working Group (BWG) of the White House Task Force on Health Care Reform was a unique experience. Approximately 40 Task Force working groups were established by Hillary Rodham Clinton, the President, and the senior Task Force staff. Various members of the President's office and other knowledgeable members of the Executive Branch selected the participants. In our group, appointments were made largely on the recommendations of the co-chairs. The BWG, among the last of the groups formed, carried the official name "The Working Group on the Ethical Foundations of the New System" and was jointly led by me and Marion Gray Secundy, a Professor of Bioethics at Howard University. The fact that the leadership of the Task Force saw fit to establish such a group, thereby confirming that bioethics is a player in the arena of health care policy, was in itself significant and was made no less so by the lack of clarity regarding the group's aims and goals.The working groups of the Task Force were organized into clusters, determined by the relatedness of the somewhat distinct, but always overlapping, content of their investigations. Separate clusters and working groups, for example, looked at mental health, long term care, and the benefit package and coverage for low-income and non-working families. On this last issue there was also a working group that explored health policy initiatives for underserved populations. This multiple focus on related issues proved to be an excellent method for ensuring that the complexity of these topics was sufficiently explored. There was a published schedule for when these groups met together, and members of other groups who had similar or overlapping concerns were invited to attend and to participate.Every week or so, all of the working groups reported to the Task Force leadership, under the direction of Ira Magaziner, in a process called a "tollgate." Prior to the tollgate, the working groups were required to submit formal written analyses of the problems they had most recently been considering. Copies of these documents were placed in a special room so that those who were interested could review... (shrink)

The aim of this study is to describe how hermeneutic photography and one application of hermeneutic photography in particular, namely the photo-instrument, can be used as a health care intervention that fosters meaning (re-)construction of mental illness experiences. Studies into the ways how patients construct meaning in illness narratives indicate that aesthetic expressions of experiences may play an important role in meaning making and sharing. The study is part of a larger research project devoted to understanding the (...) photostories that result from groups of psychiatric patients using the photo-instrument. Within a focused ethnography approach we employed a qualitative design of a single case study. Text analysis of photostories was combined with observational data. Data were analyzed using hermeneutic theory. Participant observations were used for triangulation and complementarity. The interaction and collaboration between health care professionals and patients in the context of a photo group emerged as core concept that underlies the photo-instrument. The interaction triggered a reframing of meaning in the patient’s illness narrative that offered new perspectives on positive identity growth. The role of visualizing meaning in images was found to lend a dynamic power to the process and triggered a dialectic between real life circumstances and imagination played out in the context of situated action. The findings suggest that a positive reframing of meaning in illness narratives is facilitated by the photo-instrument. (shrink)

One widely accepted way of justifying universal access to health care is to argue that access to health care is necessary to ensure health, which is necessary to provide equality of opportunity. But the evidence on the social determinants of health undermines this argument.

In lieu of an abstract, here is a brief excerpt of the content:The Patient Self-Determination ActElizabeth Leibold McCloskey (bio)What are the ethics of extending the length of life? We know that we cannot artificially end life (Thou Shalt not Kill), but how about artificially extending life? Is that always good, sometimes good?... In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?... What does basic religious ethics say about this?(John C. Danforth, letter to (...) the author, 19 August 1989)The Patient Self-Determination Act, signed into law as part of the Omnibus Budget Reconciliation Act of 1990 (OBRA '90) last November, marks the first time that Congress has passed legislation concerning the ethics of life-sustaining medical treatment. The bill was spearheaded by Senator John C. Danforth (RMO), who has a special interest in this area. An Episcopal priest, Danforth was formerly an assistant chaplain at New York's Memorial Sloan-Kettering Cancer Center and now sits as a senior member of the Senate Finance Committee, which oversees Medicare and Medicaid. Although Senator Danforth's legislative initiative was not a result of the Cruzan case, it was in his state of Missouri that the U.S. Supreme Court case involving removal of Nancy Cruzan's feeding tube arose (Cruzan v. Director of Missouri Department of Health, U.S. Supreme Court, 58 LW 4916, 26 June 1990). From his unique vantage point, he felt it was time to craft a legislative response to some of the difficult issues surrounding prolongation of life.The short answer to Senator Danforth's questions about when to artificially extend life is simple enough: people must be free to determine that for themselves. Common law and common sense dictate such a conclusion; living will and health care proxy statutes, enacted in almost every state, codify that right. The Catholic moral tradition teaches that one is not morally obligated to use extraordinary means to prolong life, a tradition shared both by the mainline Protestant and the reform and conservative Jewish community. Yet most people are unaware of their fundamental legal right to make such decisions, and as court cases from Quinlan (In re Quinlin, 137 N.J. Super. 227, 1975) to Cruzan demonstrate, few know [End Page 163] how to make arrangements for this right to be exercised if they become incapacitated.Meanwhile, health care practices are often driven by a denial of death. When Senator Danforth and Senator Daniel Patrick Moynihan (D-NY) introduced the bill on October 17, 1989, Senator Danforth said:More and more it is arguable that we play God by subjecting people to unwanted and sometimes unnecessary treatment, treatment that unnaturally prolongs the dying process. Our health care system has become obsessed with extending life, at times neglecting the caring component of medicine and trampling on the rights of patients.(Congressional Record 1989, 135:5.13566)The American Hospital Association estimates that 70 percent of deaths now occur after a determination to withhold or withdraw medical treatment. Many of those decisions are made without the benefit of an incapacitated patient's views, yet a Harvard study revealed that 95 percent of the population would like to prepare in advance for such decisions. Only 4 percent of hospitals have a systematic method of asking patients if they have an advance directive. Family members confront painful choices in the face of uncertainty about their loved one's wishes and it can be even more painful when a family knows the patient's desires but providers and the courts act otherwise because clear evidence is lacking.The Patient Self-Determination Act is rooted in the belief that people should be given information that enables them to specify the extent of medical treatment they wish to receive should they become incapacitated. The public should be educated about applicable state laws that protect the individual's right to make such choices through the use of an advance directive.The Act moves toward that goal by promoting knowledge of state laws. It requires every hospital, nursing home, home health agency, hospice, and health maintenance organization that participates in Medicaid or Medicare to routinely give all adult patients information about advance directives. Patients will also be given information on the... (shrink)

Background Few empirical studies have been found that explore ethical challenges among persons in high public positions that are responsible for elder care. The aim of this paper was to illuminate the meaning of being in ethically difficult situations related to elder care as experienced by high level decision-makers. Methods A phenomenological-hermeneutic method was used to analyse the eighteen interviews conducted with political and civil servant high level decision-makers at the municipality and county council level from two counties (...) in Sweden. The participants worked at a planning and control as well as executive level and had both budget and quality of elder care responsibilities. Results Both ethical dilemmas and the meaning of being in ethically difficult situations related to elder care were revealed. No differences were seen between the politicians and the civil servants. The ethical dilemmas mostly concerned dealings with extensive care needs and working with a limited budget. The dilemmas were associated with a lack of good care and a lack of agreement concerning care such as vulnerable patients in inappropriate care settings, weaknesses in medical support, dissimilar focuses between the caring systems, justness in the distribution of care and deficient information. Being in ethically difficult situations was challenging. Associated with them were experiences of being exposed, having to be strategic and living with feelings such as aloneness and loneliness, uncertainty, lack of confirmation, the risk of being threatened or becoming a scapegoat and difficult decision avoidance. Conclusion Our paper provides further insight into the ethical dilemmas and ethical challenges met by high level decision-makers', which is important since the overall responsibility for elder care that is also ethically defensible rests with them. They have power and their decisions affect many stakeholders in elder care. Our results can be used to stimulate discussions between high level decision-makers and health care professionals concerning ways of dealing with ethical issues and the necessity of structures that facilitate dealing with them. Even if the high level decision-makers have learned to live with the ethical challenges that confronted them, it was obvious that they were not free from feelings of uncertainty, frustration and loneliness. Vulnerability was revealed regarding themselves and others. Their feelings of failure indicated that they felt something was at stake for the older adults in elder care and for themselves as well, in that there was the risk that important needs would go unmet. (shrink)

In this paper we explore the relation between health-care needs and patients’ desires within shared decision-making in a context of priority setting in health care. We begin by outlining some general characteristics of the concept of health-care need as well as the notions of SDM and desire. Secondly we will discuss how to distinguish between needs and desires for health care. Thirdly we present three cases which all aim to bring out and (...) discuss a number of queries which seem to arise due to the double focus on a patient’s need and what that patient desires. These queries regard the following themes: the objectivity and moral force of needs, the prediction about what kind of patients which will appear on a micro level, implications for ranking in priority setting, difficulties regarding assessing and comparing benefits, and implications for evidence-based medicine. (shrink)

In this paper we explore the intersection of three topics which have historically been singled out for ethical consideration in advertising and marketing: the use of fear appeals, marketing to the elderly, and the marketing of health care services and products. Issues relevant to using fear appeals in promoting health care issues to the elderly are explored with a consumer psychologist's theoretical view of fear appeals. Next the assumption of the elderly market's vulnerability and indicants of (...) social or psychological function which would differentiate the elderly recipients of marketing communications are examined both in terms of function and ethical concerns.Overall, our review of the theoretical underpinnings of fear-based communication and the psychological characteristics does not indicate that the elderly of today are particularlyvulnerable. While the elderly are probably somewhat more dogmatic than younger consumers and perhaps view outcomes from the perspective of their age, there are no indications that their psychological responses to fear-based appeals differ significantly from those of younger consumers. (shrink)

In thinking about how to expand insurance coverage, the issue that matters is whether insurance enables sick and high-risk people to get medical care. Over the course of three decades, market-oriented insurance reforms have shifted more costs of illness onto people who need and use medical care. By making the users of care pay for it , cost-sharing discourages sick people from getting care, even if they have insurance, and for people with low-incomes and tight (...) class='Hi'>budgets, cost-sharing can effectively deny them access to care. Thus, covering or not covering sick people is the core issue of health insurance reform, both as a determinant of support and opposition to proposals, and as the proper yardstick for evaluating reform ideas. (shrink)