Ethics consultation has become an integral part of the fabric of U.S. health care delivery. This article summarizes the second edition of the Core Competencies for Health Care Ethics Consultation report of the American Society for Bioethics and Humanities. The core knowledge and skills competencies identified in the first edition of Core Competencies have been adopted by various ethics consultation services and education programs, providing evidence of their endorsement as health care ethics consultation (HCEC) (...) standards. This revised report was prompted by thinking in the field that has evolved since the original report. Patients, family members, and health care providers who encounter ethical questions or concerns that ethics consultants could help address deserve access to efficient, effective, and accountable HCEC services. All individuals providing such services should be held to the standards of competence and quality described in the revised report. (shrink)

Physicians and institutional providers face expanding liability exposure today, in spite of state tort reform legislation and public awareness of the costs of malpractice for providers. Standards of practice are evolving rapidly; new medical technologies are being introduced at a rapid rate; information is proliferating as to treatment efficacy, patient risk, and diseases generally. Tort standards mirror this change. As medical standards of care evolve, they provide a benchmark against which to measure provider failure. The liability (...) exposure of physicians is affected by the generation of data, including outcomes data usable to profile physician practice, and statistical data that allows for predictions as to treatment efficacy, and patient prognosis; obligations to inform patients and third parties of risk created by contagious disease and other sources of harm; obligations of physicians to disclose risks that the provider creates for the patient; obligations to disclose conflicts of interest arising out of the practice setting; and duties arising from new epidemiological knowledge. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and BiomedicineCouncil of EuropePreambleThe Member States of the Council of Europe, the other States and the European Community signatories hereto,Bearing in mind the Universal Declaration of Human Rights proclaimed by the General Assembly of the United Nations on 10 December 1948;Bearing in mind the (...) Convention for the Protection of Human Rights and Fundamental Freedoms of 4 November 1950;Bearing in mind the European Social Charter of 18 October 1961;Bearing in mind the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights of 16 December 1966;Bearing in mind the Convention for the Protection of Individuals with Regard to Automatic Processing of Personal Data of 28 January 1981;Bearing also in mind the Convention on the Rights of the Child of 20 November 1989;Considering that the aim of the Council of Europe is the achievement of a greater unity between its members and that one of the methods by which that aim is to be pursued is the maintenance and further realisation of human rights and fundamental freedoms;Conscious of the accelerating developments in biology and medicine;Convinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being; [End Page 277]Conscious that the misuse of biology and medicine may lead to acts endangering human dignity;Affirming that progress in biology and medicine should be used for the benefit of present and future generations;Stressing the need for international co-operation so that all humanity may enjoy the benefits of biology and medicine;Recognising the importance of promoting a public debate on the questions posed by the application of biology and medicine and the responses to be given thereto;Wishing to remind all members of society of their rights and responsibilities;Taking account of the work of the Parliamentary Assembly in this field, including Recommendation 1160 (1991) on the preparation of a Convention on bioethics;Resolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine;Have agreed as follows:Chapter IGeneral provisionsArticle 1. (Purpose and object)Parties to this Convention shall protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.Each Party shall take in its internal law the necessary measures to give effect to the provisions of this Convention.Article 2. (Primacy of the human being)The interests and welfare of the human being shall prevail over the sole interest of society or science.Article 3. (Equitable access to health care)Parties, taking into account health needs and available resources, shall take appropriate measures with a view to providing, within their jurisdiction, equitable access to health care of appropriate quality. [End Page 278]Article 4. (Professional standards)Any intervention in the health field, including research, must be carried out in accordance with relevant professional obligations and standards.Chapter IIConsentArticle 5. (General rule)An intervention in the health field may only be carried out after the person concerned has given free and informed consent to it.This person shall beforehand be given appropriate information as to the purpose and nature of the intervention as well as on its consequences and risks.The person concerned may freely withdraw consent at any time.Article 6. (Protection of persons not able to consent)1. Subject to Articles 17 and 20 below, an intervention may only be carried out on a person who does not have the capacity to consent, for his or her direct benefit.2. Where, according to law, a minor does not have the capacity to consent to an intervention, the intervention may only be carried out with the authorisation of his or her representative or an authority or a person or... (shrink)

Geographical variations are documented for a wide range of health care services. As many such variations cannot be explained by demographical or epidemiological differences, they are problematic with respect to distributive justice, quality of care, and health policy. Despite much attention, geographical variations prevail. One reason for this can be that the ethical issues of geographical variations are rarely addressed explicitly. Accordingly, the objective of this article is to analyse the ethical aspects of geographical variations (...) in the provision of health services. Applying a principlist approach the article identifies and addresses four specific ethical issues: injustice, harm, lack of beneficence, and paternalism. Then it investigates the normative leap from the description of geographical variations to the prescription of right care. Lastly, the article argues that professional approaches such as developing guidelines, checklists, appropriateness criteria, and standards of care are important measures when addressing geographical variations, but that such efforts should be accompanied and supported by ethical analysis. Hence, geographical variations are not only a healthcare provision, management, or a policy making problem, but an ethical one. Addressing the ethical issues with geographical variations is key for handling this crucial problem in the provision of health services. (shrink)

In alignment with stated social, health, and environmental values, hundreds of hospitals in the United States are purchasing local, organic, and other alternative foods. Due to the logistical and economic constraints associated with feeding hundreds to thousands of people every day, new food procurement initiatives in hospitals grapple with integrating conventional supply chain norms of efficiency, standardization, and affordability while meeting the diverse values driving them such as mutual benefit between supply chain members, environmental stewardship, and social equity. This (...) paper provides empirical data and analysis on emerging values-based supply chains in hospitals that attempt to meet both the scale-based requirements and values-based goals of alternative food procurement initiatives. In particular, it examines tensions among industrial, economic, and alternative agrifood values in relation to a particular set of hospital supply chain players called Group Purchasing Organizations. Hospital membership in GPOs in the United States is ubiquitous, and 80–90 % of a hospital’s foodservice procurement comes through GPO channels in keeping with contract terms. GPO-governed supply chains are deeply rooted in industrial and commercial norms, in other words, price competition, economic efficiency, and forces of standardization through adherence to technical and quality standards. The bulk of alternative food procurement initiatives in the health care sector currently occur outside of the GPO–hospital relationship, however, over 90 % of hospital foodservice directors interviewed for this research expressed a desire to increase sustainable food procurement through their GPO. This study finds that, if alternative agrifood efforts in the health care sector are to integrate with GPO-governed supply chains without losing the robustness of the original values and goals that brought them into being, concerns related to supply chain structure, transparency and traceability of alternative food attributes, and alignment of definitions of local and sustainable food between all supply chain members will need to be addressed. This study also details points of flexibility in health care food supply chains and the potential for hospitals to create purchasing and informational alliances around common food goals in order to create new, values-based supply chain relationships both within and beyond GPO procurement channels. (shrink)

Spiritual care is a profession in transformation. It is evolving from a denominationally bound profession into a specific kind of healthcare profession. In the Netherlands, as elsewhere, debates are going on about the introduction of standards in public services such as health care. Many spiritual counsellors oppose standardization of spiritual care. Most importantly, standards seem to conflict with their sanctuary position as well as with the ?theory of presence? that many spiritual counsellors adhere to. (...) A questionnaire was distributed among spiritual counsellors asking them about the nature and number of standards they work with and the positive and negative effects of these standards on their daily work. This exploratory study shows that only a few spiritual counsellors work with standards. It also reveals that those who work with standards are neutral to positive about the ways in which standards influence their work. In particular, spiritual counsellors working with standards state that doing so does not conflict with their sanctuary position, nor with their ?being present?. The responses suggest that it does not seem to be standards as such but rather the social setting within which the standards are used that determines the effects that standards have on the content and quality of spiritual care. The paper concludes with some recommendations and suggestions for further investigation. (shrink)

Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I suggest that quality with regard to diagnosis and treatment (...) is an inherent, morally normative requirement of health care, and argue that quality concerns in this sense may be balanced with privacy concerns. (shrink)

Edited by four leading members of the new generation of medical and healthcare ethicists working in the UK, respected worldwide for their work in medical ethics, Principles of Health Care Ethics, Second Edition_is a standard resource for students, professionals, and academics wishing to understand current and future issues in healthcare ethics. With a distinguished international panel of contributors working at the leading edge of academia, this volume presents a comprehensive guide to the field, with state of the art (...) introductions to the wide range of topics in modern healthcare ethics, from consent to human rights, from utilitarianism to feminism, from the doctor-patient relationship to xenotransplantation. This volume is the Second Edition of the highly successful work edited by Professor Raanan Gillon, Emeritus Professor of Medical Ethics at Imperial College London and former editor of the Journal of Medical Ethics, the leading journal in this field. Developments from the First Edition include:_ The focus on ‘Four Principles Method’ is relaxed to cover more different methods in health care ethics. More material on new medical technologies is included, the coverage of issues on the doctor/patient relationship is expanded, and material on ethics and public health is brought together into a new section. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect (...) patients as self-determining agents. In this paper I look at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

Every successful health care system should be based on some general humanistic ideals. However, the nationally organized health care systems of most European countries usually suffer from a deficiency in common ethical values based on universal human principles. When transitional societies, such as that of Bosnia-Herzegovina are concerned, health care organizational models are even more dysfunctional. The sources of a dysfunction in medical care system of Bosnia-Herzegovina are manifold and mutually controversial, including a (...) lack of shared principles, an inappropriate involvement of politicians in medical care and practice, administrative difficulties arising from superficial communication systems, as well as economic limits concerned with the financing of health care. The deficiency of a moral culture of medicine, which is correlated to a general collapse of morality is also responsible for many problems affecting various aspects of life including medical care. Hence, medical ethics from a virtue perspective is becoming an important ingredient of any improvement deigned to provide better-quality medical care.The aim of this paper is to underline the influence of humanism on the organization of health care systems and the ethics of medical interrelations in the society of Bosnia-Herzegovina. It is not intended to diagnose or resolve the problems, but to analyze them. It is also a critique of specific socio-political-economic influences on this health care system, inquiring if well-educated individuals in the virtues, which are involved in medical practice and education, would counteract them.In conclusion, humanism creates a universal ethical structure, which is based on human values such as fidelity, trust, benevolence, intellectual honesty, courage, compassion and truthfulness. These values should represent the standard around which medical care is organized. Since the health care system in Bosnia-Herzegovina is not entirely founded upon humanistic ideals, addressing the socio-political-economic conditions that constantly undermine those values is a prerequisite for any much-needed improvements of the medical care. (shrink)

Every successful health care system should be based on some general humanistic ideals. However, the nationally organized health care systems of most European countries usually suffer from a deficiency in common ethical values based on universal human principles. When transitional societies, such as that of Bosnia-Herzegovina are concerned, health care organizational models are even more dysfunctional. The sources of a dysfunction in medical care system of Bosnia-Herzegovina are manifold and mutually controversial, including a (...) lack of shared principles, an inappropriate involvement of politicians in medical care and practice, administrative difficulties arising from superficial communication systems, as well as economic limits concerned with the financing of health care. The deficiency of a moral culture of medicine, which is correlated to a general collapse of morality is also responsible for many problems affecting various aspects of life including medical care. Hence, medical ethics from a virtue perspective is becoming an important ingredient of any improvement deigned to provide better-quality medical care. The aim of this paper is to underline the influence of humanism on the organization of health care systems and the ethics of medical interrelations in the society of Bosnia-Herzegovina. It is not intended to diagnose or resolve the problems, but to analyze them. It is also a critique of specific socio-political-economic influences on this health care system, inquiring if well-educated individuals in the virtues, which are involved in medical practice and education, would counteract them. In conclusion, humanism creates a universal ethical structure, which is based on human values such as fidelity, trust, benevolence, intellectual honesty, courage, compassion and truthfulness. These values should represent the standard around which medical care is organized. Since the health care system in Bosnia-Herzegovina is not entirely founded upon humanistic ideals, addressing the socio-political-economic conditions that constantly undermine those values is a prerequisite for any much-needed improvements of the medical care. (shrink)

Failings in patient care and quality in NHS Trusts have become a recurring theme over the past few years. In this paper, we examine the Care Quality Commission’s Guidance about Compliance: Essential Standards of Quality and Safety and ask how NHS Trusts might be better supported in fulfilling the regulations specified therein. We argue that clinical ethics committees (CECs) have a role to play in this regard. We make this argument by attending to the (...) many ethical elements that are highlighted in the Commission’s Regulations and by providing practical examples of how CECs can (and in some case already do) provide ethics support to health professionals and trusts. Although CECs have been traditionally associated with case consultation, i.e., discrete problems caused by individual circumstances, in the previous 10 years the literature suggests that clinical ethics services have become more integrated into the life of the health care organization and are increasing construed as proactive agents of systematic change. We provide evidence from a recent survey of UK clinical ethics services that this trend is present in the UK. (shrink)

Entry into the practice of medicine is heavily regulated through scope of practice and licensing laws that make it illegal for nonlicensed individuals to perform many medical services. As institutions are structured at the beginning of the twenty-first century, most regulation takes place at the state level, through state departments of health that establish criteria for performing different types of medical activities, and that restrict allowable activities for various types of health care professionals. The regulations over the (...) activities of physicians are more uniform across states than for other health care professionals because, although the regulation is done by individual state governments, the standards for physicians are set by the National Board of Medical Examiners, a group controlled by physicians themselves. The justification for this regulation is that it produces higher quality health care. Some would make an even stronger argument that regulation is necessary because patients do not have sufficient knowledge to distinguish effective practitioners from ineffective ones. (shrink)

Entry into the practice of medicine is heavily regulated through scope of practice and licensing laws that make it illegal for nonlicensed individuals to perform many medical services. As institutions are structured at the beginning of the twenty-first century, most regulation takes place at the state level, through state departments of health that establish criteria for performing different types of medical activities, and that restrict allowable activities for various types of health care professionals. The regulations over the (...) activities of physicians are more uniform across states than for other health care professionals because, although the regulation is done by individual state governments, the standards for physicians are set by the National Board of Medical Examiners, a group controlled by physicians themselves. The justification for this regulation is that it produces higher quality health care. Some would make an even stronger argument that regulation is necessary because patients do not have sufficient knowledge to distinguish effective practitioners from ineffective ones. (shrink)

As web instruction becomes more and more prevalent at universities across the country, instructors of ethics are being encouraged to develop online courses to meet the needs of a diverse array of students. Web instruction is often viewed as a cost-saving technique, where large numbers of students can be reached by distance education in an effort to conserve classroom and instructor resources. In practice, however, the reverse is often true: online courses require more of faculty time and effort than do (...) many traditional classes. Based on personal experience teaching an online course in health care ethics for students in the Allied Health Professions, it is evident that there are both benefits and challenges in teaching online courses, particularly in ethics. Examples of benefits are (1) the asynchronous nature of web instruction allows students to progress through the course at their own pace and at times that are convenient given their clinical responsibilities; (2) web courses allow for a standardization of content and quality of instruction over a diversity of programs; and (3) examples can be tailored to the differing experiences of students in the course. Some challenges to teaching online ethics courses include (1) the fact that online instruction benefits visual learners and disadvantages those lacking good reading comprehension or strong writing skills; (2) developing meaningful student-student and student-instructor interaction; and (3) teaching ethics involves teaching a process rather than a product. Allowing students to apply their knowledge to real-world cases in their disciplines and encouraging them to share experiences from clinical practice is an effective way to meet several of these challenges. Building an online community is another good way to increase the interaction of students and their engagement with the material. (shrink)

On February 2,2004,U.S. District Judge Federico Moreno issued the final order and judgment authorizing a settlement between the HMO CIGNA Healthcare and the physicians who treated patients covered by CIGNA, ending the companys involvement in the larger class action In re Managed Care Litigation, which stil includes eight other HMOs. The settlement, estimated by plaintiffs experts to be worth 1.3 billion, mandates changes in the companys business and disclosure practices, establishes a non-profit foundation dedicated to the promotion of high (...) quality health care, and guarantees at least 70 million in payments to the physicians. Similar in scope to the settlement approved between the physician class and Aetna Healthcare in October 2003,the settlement could potentially set a new standard for transparency and physician involvement in billing practices; however, much depends on the outcome of the remainder of the class action, which is set to go to trial later this year. (shrink)

The doctor-patient relationship is a crucial aspect of primary-care practice Research on associations between quality of care provision and burnout and empathy in a primary care setting could improve this relationship. Cross-sectional study of family physicians and nurses of twenty-two primary care centers in the health district of Lleida, Spain. Empathy and burnout were measured using the Jefferson Physician Empathy Scale and the Maslach Burnout Inventory, while quality of care delivery was evaluated (...) using Quality Standard Indicator scores. JPSE and MBI results were grouped into low, medium, and high scores to analyze associations with QSI scores and sociodemographic variables. The mean QSI score recorded for the family physicians and nurses was 665. Higher, albeit insignificant, QSI scores were observed for practitioners with high burnout. No differences were observed according to level of empathy. The differences with respect to sex, age, and area of practice were not significant. Practitioners with low empathy had higher QSI scores than those with high empathy while those with high burnout had higher scores than those with low burnout. Burnout and empathy did not significantly influence quality of care delivery scores in 22 primary care centers. More studies, however, are needed to investigate the unexpected trend observed that suggests that physicians and nurses with higher levels of burnout provide higher quality care. (shrink)

End-of-life disputes in Ontario are currently overwhelmingly assessed through the singular lens of patient autonomy. The current dispute resolution mechanism does not adequately consider evidence-based medical guidelines, standards of care, the patient’s best interests, expert opinion, or distributive justice. We discuss two cases adjudicated by the Consent and Capacity board of Ontario that demonstrate the over emphasis on patient autonomy. Current health care policy and the Health Care Consent Act also place emphasis on patient (...) autonomy without considering other ethically defensible factors. We argue that current policy and legislation require amendment, and unless there are measures undertaken to modify them, both the quality of care provided and the long-term capabilities of the health care system to remain publicly-funded, comprehensive and equitable, are at stake. (shrink)

During the past three decades, there has been an ongoing debate on the quality of health care. Defining quality is an important part of it. This paper offers a review of definitions and a conceptual analysis in order to understand and explain the differences between them. The analysis results in a semantic rule, expressing the meaning of quality as an optimal balance between possibilities realised and a framework of norms and values. This rule is postulated (...) as a formal criterion of meaning, e.g. when (correctly) applied people understand each other. The rule suits the abstract nature of the term quality. Quality doesn't exist as such. It is constructed in an interaction between people. This interaction is guided by rules in order to transfer information, e.g. communicate on quality. The rule improves our ability to discuss the debate on quality and to develop a theory grounding actions such as quality assurance or quality improvement. (shrink)

The availability of free health care to all citizens has been regarded as a great achievement of the Soviet society. In recent decades, however, decreased funding of the state-run health care system has led to a deterioration in the quality and quantity of available medical equipment and services. More than 50 percent of the Russian population is dissatisfied with the health care system and the attitudes and moral standards of their health (...) care providers. This article discusses the degree, nature, and some of the causes of the public's dissatisfaction and concludes with a preliminary look toward the future of the Russian health care system. (shrink)

Wearable devices are increasingly present in the health context, as tools for biomedical research and clinical care. In this context, wearables are considered key tools for a more digital, personalised, preventive medicine. At the same time, wearables have also been associated with issues and risks, such as those connected to privacy and data sharing. Yet, discussions in the literature have mostly focused on either technical or ethical considerations, framing these as largely separate areas of discussion, and the contribution (...) of wearables to the collection, development, application of biomedical knowledge has only partially been discussed. To fill in these gaps, in this article we provide an epistemic (knowledgerelated) overview of the main functions of wearable technology for health: monitoring, screening, detection, and prediction. On this basis, we identify 4 areas of concern in the application of wearables for these functions: data quality, balanced estimations, health equity, and fairness. To move the field forward in an effective and beneficial direction, we present recommendations for the 4 areas: local standards of quality, interoperability, access, and representativity. (shrink)

The “learning health care system” is being heralded as offering great potential for improving the quality and cost-worthiness of medical care by closely integrating the care of patients with the accumulation of aggregate data that can guide evidence-based medicine. By using electronic medical records, routine patient care and administrative data will be available for systematic observational studies. With the aid of these electronic medical records, quality-improvement studies of institutional practices and pragmatic, comparative effectiveness (...) randomized trials of individual treatments could become standard features of the medical care environment in the LHS. In this.. (shrink)

The growing prevalence of health care ethics consultation (HCEC) services in the U.S. has been accompanied by an increase in calls for accountability and quality assurance, and for the debates surrounding why and how HCEC is evaluated. The objective of this study was to evaluate the effectiveness of HCEC as indicated by several novel outcome measurements in East Asian medical encounters.

Context is a pivotal concept for social scientists in their attempt to weave singularities or universals to moral codes and political orders. However, in this, social scientists might be neglecting the ways in which individuals or groups who are excluded from the collective production of knowledge want to politicize their concerns also by claiming their uniqueness and singularity. In this article, drawing on the public controversy about access to dementia drugs on the U.K. National Health Service and on the (...) work of pioneering sociologist Helen McGill Hughes on “human interest stories,” the author argues that the “politics of singularities” can be articulated in two related ways within technical controversies. First, it expresses the unraveling of sociotechnical ties caused by institutional failure to take concerns into account. Second, it expresses the concrete uniqueness of persons caught by standardized, “universal” and impersonal implements and/or policies. Both these effects are underpinned by resourcing to allegorical expression, a literary form that while fostering political imagination in technological democracies might weaken Science and Technology Studies' ambitions to influence decision making. (shrink)

The care of patients should be professional, human and humane. This is an ethical issue. The words human (inhimillinen) and humane (ihmisläheinen) have different meanings in the Finnish language. At Kuopio University Hospital (1200 beds), in Finland, it was decided to provide patients with professional and humane caring. Ethical values differ for different groups of people. Therefore humane caring was assessed by questioning both hospital patients (n = 160) and staff (n = 196). The data were subjected to content (...) analysis. The result was that the values obtained for both patients and staff were similar. Five descriptive categories of humane caring emerged. To discover what kind of caring was provided for patients, the categories were operationalized into 66 criteria and a questionnaire was drawn up on the basis of these criteria. The data for evaluation of the quality of caring were collected from patients (n = 1708). The data were analysed using cross-tabulations and the chi-squared test; sum variables were calculated for the five standards. The results suggest that special attention should be paid to vulnerable patient groups (e.g. the elderly and the young). One means of ethical management is to support our staff to care more humanely by discussing with them the results of this study, setting standards and criteria for humane caring and what this means in practice. It is hoped our caring will therefore be more humane. (shrink)

BackgroundIn the last 2 weeks of January 2021, Portugal was the worst country in the world in incidence of infections and deaths due to COVID-19. As a result, the pressure on the healthcare system increased exponentially, exceeding its capacities and leaving hospitals in near collapse. This scenario caused multiple constraints, particularly for hospital medical staff. Previous studies conducted at different moments during the pandemic reported that COVID-19 has had significant negative impacts on healthcare workers’ psychological health, including stress, anxiety, (...) depression, burnout, post-traumatic stress symptoms, and sleep disturbances. However, there are many uncertainties regarding the professional quality of life of hospital nurses and physicians. To address gaps in previous research on secondary traumatic stress, we focused on healthcare workers working in hospitals affected by a major traumatic event: the third wave of COVID-19.ObjectivesThe aim of the present study was to identify the contribution of personal and work-related contextual variables on professional quality of life of healthcare workers.MethodsCross-sectional study with a web-based questionnaire given to physicians and nurses working in a hospital setting. A total of 853 healthcare professionals participated in the survey assessing professional quality of life compassion satisfaction, secondary traumatic stress, and burnout. Factors of professional quality of life were assessed using regression analysis.ResultsMost of the participants showed moderate or high levels of compassion satisfaction, whereas the majority of them experienced moderate levels of burnout and secondary traumatic stress. The analyzed variables demonstrated no differences between professionals who were directly or not involved in the care of COVID-19 patients. Parental status was found to be a significant factor in compassion satisfaction. Female gender was significantly associated with more susceptibility to secondary traumatization. Factors that may potentially contribute to burnout include years of professional experience and the number of work hours per week.ConclusionThe COVID-19 pandemic has created a new challenge for the healthcare system. Burnout and secondary traumatic stress can lead to medical errors and impact standards of patient care, particularly compromising compassionate care. It is therefore recommended that hospitals develop psychoeducational initiatives to support professionals in dealing with barriers to compassion. (shrink)

Using interviews with activists and Lisa Sowle Cahill's concept of participatory discourse, this article examines how the Greater Boston Interfaith Organization (GBIO) built solidarity for the 2006 Massachusetts health care reform law. The analysis explores the morally formative connections between GBIO's activist strategies and its public liturgy for reform. The solidarity generated through this interfaith coalition's activities and religious arguments contrasts with two standard types of policy discourse, economics and liberalism. Arguments for health care reform based (...) on economic efficiency or positive rights are hampered by the lack of solidarity in U.S. political culture. GBIO's congregation-based organizing offers a performative model of public argumentation for religious groups committed to achieving affordable, quality health care for all Americans. (shrink)

The use of quality of life (QOL) outcomes in clinical trials is increasing as a number of practical, ethical, methodological, and regulatory reasons for their use have become apparent. It is important, then, that QOL measurements and differences between QOL scores be readily interpretable. We study interpretation in two contexts: when determining QOL and when basing decisions on QOL differences. We consider both clinical situations involving individual patients and research contexts, e.g., randomized clinical trials, involving groups of patients. We (...) note the ethical importance of such understanding: proper interpretation and communication facilitate health care decision making. Communication that facilitates interpretation is of moral significance since better communication can attenuate ethical problems and inform choices. Much of what is communication worthy about QOL assessments is determined by the particular QOL instrument used in the assessment and how it is administered. In practice, these choices will be driven by the purpose of the assessment, but, it is argued, to maximize understanding, we should combine the information garnered from traditional standardized QOL instruments, from individualized QOL assessments, and from a recently proposed dialogic paradigm, where QOL is determined by shared conversation regarding the interpretation of texts. And, while some studies can surely succeed using abbreviated methods of administration (e.g., postal surveys may suffice for certain purposes), we will focus on methods of administration involving interviewer–respondent interaction. We suggest that during the QOL elicitation process, interviewer and respondent should engage in a two-way conversation in order to achieve a shared understanding of the “answers” to QOL “questions” and, finally, to reach a shared interpretation of the individual’s QOL. (shrink)

Against the backdrop of cultural and political ideals, this article highlights both the significance of mental health nursing in meeting population needs and the regulatory barriers that may be impeding its ability to adequately do so. Specifically, we consider how ambiguous notions of ‘proficiency’ in nurse education—prescribed by the regulator—impact the development of future mental health nurses and their mental health nursing identity. A key tension in mental health practice is the ethical‐legal challenges posed by sanctioned (...) powers to restrict patients' freedom at the same time as the desire (and obligation) to promote patients' self‐determined recovery. The genericism of the UK's Future Nurse Standards do little to prepare mental health nurses to navigate the tensions that ensue. This has consequences for nurses and patients alike, as both risk experiencing the distress and dissonance that attends giving or receiving poor care. We argue that more needs to be done to enable mental health nurses to define and articulate the nuances of the profession as part of becoming critical, thoughtful and confident practitioners. Educators can contribute to this mission by aligning curriculum, pedagogy and assessment to create meaningful opportunities for mental health nursing students to engage with the complexities of mental health nursing practice. Without this, the credibility of the profession will continue to be questioned; its future uncertain. (shrink)

There is a curious asymmetry in cases where the use of religious language involves a breakdown in communication and leads to a seemingly intractable dispute. Why does the use of religious language in such cases almost always arise on the side of patients and their families, rather than on the side of clinicians or others who work in healthcare settings? I suggest that the intractable disputes arise when patients and their families use religious language to frame their problem and the (...) possibilities of solution. Unlike clinicians, they are not bilingual and thus lack the capacity to understand and negotiate differences in terms that are responsive to those who work in healthcare settings. After considering a representative case, I explore whether an ethics consultant or chaplain can function as a translator and suggest that, at best, such efforts at mediation depend on contingent aspects of a case and will only be partially successful. To appreciate limits on the role for bilingual translators, I consider a futility dispute where a parent using religious language demands that everything be done for a permanently unconscious child. I challenge the traditional interpretation that says the parent values “mere duration of biological life irrespective of quality.” From a religious perspective, human life is never “merely biological.” This effort to slot the dispute into standard philosophical schemas misses what is crucial in the dispute. I suggest that a better interpretation views the dispute at a meta-level as one about whether withholding and withdrawing care is morally distinguishable from killing. Curiously, this interpretation makes the advocate of futile care into an ally of those “quality of life” advocates who also challenge this distinction. The crux of their dispute now rests on the normative ethics of killing. While I think my interpretation comes much closer to the views of many who demand ‘futile care,’ I suggest that it still falls short because of the way it reconstructs the religious concerns in nonreligious terms. I close by considering an analogy between the language of suffering and the language of faith, suggesting that both require a much richer understanding of the narratives that orient the lives of patients and their families. (shrink)

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails (...) a commitment to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

This paper critically engages ethical issues in the allocation of novel, and potentially costly, health care resources to patients with disorders of consciousness. First, we review potential benefits of novel health care resources for patients and their families and outline preliminary considerations to address concerns about cost. We then address two problems regarding the allocation of health care resources to patients with disorders of consciousness: (1) the problem of uncertain moral status; and (2) the (...) problem of accurately measuring the welfare burdens these resources would relieve. We conclude by suggesting that opportunity-based frameworks might complement standard approaches for justifying resources allocation to patients with disorders of consciousness. (shrink)

The Danish health care sector currently undergoes changes that imply a gradual transition from an evidence‐based activity model to a value‐based quality model centered on patient involvement and value‐based governance. The patient naturally occupies a central position in health care, and the transition therefore raises important questions about health care quality and how successive national health quality strategies value quality and ascribe roles and agency to patients. To explore the (...) complexity of these quality strategies, we analyze and discuss how political discourse moments influence the contents of the national health quality strategies and how variation in the construal of patient roles and agency indicates discursive struggle in Danish national health care policy. Underlying theoretical concepts are informed by New Public Management, the welfare state, health communication, and discourse theory. Our analytical approach is inspired by Critical Discourse Analysis and combines content analysis with linguistic analysis. (shrink)

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on (...) class='Hi'>health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics. (shrink)

This paper proposes a new perspective on the methodology of qualitative inquiry in ethics, especially the interaction between empirical work and theory development, and introduces standards to evaluate the quality of this inquiry and its findings. The kind of qualitative inquiry the authors are proposing brings to light what participants in practices of care and welfare do and refrain from doing, and what they undergo, in order to offer ‘stepping stones’, political-ethical insights that originate in the practice (...) studied and enable practitioners to deal with newly emerging moral issues. As the authors’ aim is to study real-life complexity of inevitably morally imprinted care processes, their empirical material typically consists of extensive and comprehensive descriptions of exemplary cases. For their research aim the number of cases is not decisive, as long as the rigorous analysis of the cases studied provides innovative theoretical insights into the practice studied. Another quality criterion of what they propose that should be called ‘N=N case studies’ is the approval the findings receive from the participants in the practice studied. (shrink)

In response to the COVID-19 pandemic, large-scale research and pharmaceutical regulatory processes have proceeded at a dramatically increased pace with new and effective, evidence-based COVID-19 interventions rapidly making their way into the clinic. However, the swift generation of high-quality evidence and the efficient processing of regulatory authorisation have given rise to more specific and complex versions of well-known research ethics issues. In this paper, we identify three such issues by focusing on the authorisation of Molnupiravir, a novel antiviral medicine (...) aimed at reducing the ability of SARS-CoV-2 to multiply in the body, for clinical use by the National Health Service in England and the concomitant testing of Molnupiravir through the large-scale PANORAMIC randomised control trial. By analysing the ways in which the authorisation and clinical use of Molnupiravir complicate standard approaches to clinical equipoise, standard of care, and participant consent in the PANORAMIC randomised control trial we will explain some of ethical implications for clinical trials that aim to study the efficacy and safety of new COVID-19 and other therapeutics when conditional authorisation has already been granted and when such treatments have already been made available to patients by national health providers. (shrink)

BackgroundHIV prevention research in resource-limited countries is associated with a variety of ethical dilemmas. Key amongst these is the question of what constitutes an appropriate standard of health care (SoC) for participants in HIV prevention trials. This paper describes a community-focused approach to develop a locally-appropriate SoC in the context of a phase III vaginal microbicide trial in Mwanza City, northwest Tanzania.MethodsA mobile community-based sexual and reproductive health service for women working as informal food vendors or in (...) traditional and modern bars, restaurants, hotels and guesthouses has been established in 10 city wards. Wards were divided into geographical clusters and community representatives elected at cluster and ward level. A city-level Community Advisory Committee (CAC) with representatives from each ward has been established. Workshops and community meetings at ward and city-level have explored project-related concerns using tools adapted from participatory learning and action techniques e.g. chapati diagrams, pair-wise ranking. Secondary stakeholders representing local public-sector and non-governmental health and social care providers have formed a trial Stakeholders' Advisory Group (SAG), which includes two CAC representatives.ResultsKey recommendations from participatory community workshops, CAC and SAG meetings conducted in the first year of the trial relate to the quality and range of clinic services provided at study clinics as well as broader standard of care issues. Recommendations have included streamlining clinic services to reduce waiting times, expanding services to include the children and spouses of participants and providing care for common local conditions such as malaria. Participants, community representatives and stakeholders felt there was an ethical obligation to ensure effective access to antiretroviral drugs and to provide supportive community-based care for women identified as HIV positive during the trial. This obligation includes ensuring sustainable, post-trial access to these services. Post-trial access to an effective vaginal microbicide was also felt to be a moral imperative.ConclusionParticipatory methodologies enabled effective partnerships between researchers, participant representatives and community stakeholders to be developed and facilitated local dialogue and consensus on what constitutes a locally-appropriate standard of care in the context of a vaginal microbicide trial in this setting.Trial registrationCurrent Controlled Trials ISRCTN64716212. (shrink)