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Abstract: Abstract In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life. PubDate: 2023-01-18
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Abstract: Abstract The last decade has seen significant developments in UK health policy, with are largely claimed to be evidence based. However, such a characterisation ought, in many cases, to be questioned. Policies can be broadly understood as based primarily on either a logical or empirical case. In the absence of relevant empirical evidence, policymakers understandably appeal to logical cases. Once such evidence is available, however, it can inform policy and enable the logical case to be set aside. Such a linear policy process is not always the reality, and logical cases often continue to guide policy decisions in direct opposition to empirical evidence. In this paper, I discuss two recent examples of this disconnect between logical and empirical cases in UK health policy. The first—organ donation—illustrates an example of a significant policy change being made in opposition to the evidence. I refer to this as the improvidence approach. The second—abortion—provides an example of policymakers not making a change that has extensive supporting data. I refer to this using the more recognisable language of the precautionary approach. Ultimately, I argue that both the improvidence and precautionary approaches are examples of problematic public policy where policymakers provide no explicit justification for going against the evidence. PubDate: 2022-12-26
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Abstract: Abstract Person centered care (PCC) invites ideas of shared responsibility as a direct result of its shared decision making (SDM) process. The intersection of PCC and psychiatric contexts brings about what I refer to as the responsibility problem, which seemingly arises when SDM is applied in psychiatric settings due to (1) patients’ potentially diminished capacities for responsibility, (2) tension prompted by professional reasons for and against sharing responsibility with patients, as well as (3) the responsibility/blame dilemma. This paper aims to do away with the responsibility problem through arguing for a functional approach to mental illness, a blameless responsibility ascription to the person with mental illness, as well as a nuanced understanding of SDM as part of an emancipation-oriented PCC model. PubDate: 2022-12-03
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Abstract: Abstract Vaccination can protect vaccinated individuals and often also prevent them from spreading disease to other people. This opens up the possibility of getting vaccinated for the sake of others. In fact, altruistic vaccination has recently been conceptualized as a kind of vaccination that is undertaken primary for the benefit of others. In order to better understand the potential role of altruistic motives in people’s vaccination decisions, we conducted two focus group studies with a total of 37 participants. Study 1 included three focus groups on the subject of HPV vaccination for boys. Study 2 included three focus groups on the subject of pertussis and measles vaccination for childcare workers. We found substantial evidence of other-regarding motives across all focus groups, which suggests that altruistic motives could be an important factor when it comes to people’s vaccination decisions. We address the significance of these findings for vaccination policy surrounding HPV vaccination for boys and vaccination for childcare workers. We also extend the findings to normative work on vaccination for the sake of others more generally. PubDate: 2022-12-01
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Abstract: Abstract This study aims to develop a valid and reliable scale to assess whether a physician is inclined to take conscientious objection when asked to perform medical services that clash with his/her personal beliefs. The scale, named the Inclination toward Conscientious Objection Scale, was developed for physicians in Turkey. Face validity, content validity, criterion-related validity, and construct validity of the scale were evaluated in the development process. While measuring criterion-related validity, Student’s t-test was used to identify the groups that did and did not show inclination toward conscientious objection. There were 126 items in the initial item pool, which reduced to 42 after content validity evaluation by five experts. After necessary adjustments, the scale was administered to 224 participants. Both exploratory and confirmatory factor analyses were performed to investigate factor structure. The split-half method was employed to assess scale reliability, and the Spearman-Brown coefficient was calculated. Cronbach’s alpha reliability coefficient was used to estimate the internal consistency of the scale items. The distinctiveness of the items was evaluated using Student’s t-test. The lower and upper 27% groups were compared to assess the distinctiveness of the scale. The items were loaded on four factors that explained 85.46% of the variance: “Conscientious Objection – Medical Profession Relationship,” “Conscientious Objection in Medical Education and Medical Practice,” “Conscientious Objection with regard to the Concept of Rights” and “Conscientious Objection – Physician’s Professional Identity and Role.” The final scale has 40 items, and was found to be valid and reliable with high internal consistency. PubDate: 2022-12-01
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Abstract: Abstract As embryonic stem cell research is commercialized, the stem cell debate may shift focus from concerns about embryo destruction to concerns about exploitation of the women who donate eggs and embryos for research. Uncomfortable with the polarization of the embryo debate, this paper proposes a more “contemplative” approach than intellectual debate to concerns about exploitation. After examining pitfalls of rigid intellectual positions on exploitation, the paper investigates the possibility of a broader understanding of donation for research where patients are seen as the intended beneficiaries of the donation. Together with other actors, research is perceived as mediating altruistic gift relationships that extend from donors to patients. The paper explores how this broader perspective on “donation for research” can open up new possibilities of understanding donation and addressing risks of exploitation. PubDate: 2022-11-25
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Abstract: Abstract “Wicked” problems are characterized by intractable complexity, uncertainty, and conflict between individuals or institutions, and they inhabit almost every corner of medical ethics. Despite wide acceptance of the same ethical principles, we nevertheless disagree about how to formulate such problems, how to solve them, what would count as solving them, or even what the possible solutions are. That is, we don’t always know how best to implement ethical ideals in messy real-world contexts. I sketch an implementation framework for medical ethics that can help clarify wicked problems and organize further ethics research toward their resolutions. This framework describes the procedural variables that work alongside substantive ethical ideals to deliver ethical decisions in complex real-world situations. Using controversial GM mosquito research as an example, I illustrate how the generalizable relationships between the variables clarify emerging ethical guidelines of research governance and provide a pathway to extend these guidelines in a way consistent with our ethical intuitions across a wide range of research and public health ethics. PubDate: 2022-06-06 DOI: 10.1007/s10728-022-00445-5
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Abstract: Abstract Serious incident investigations—often conducted by means of Root Cause Analysis methodologies—are increasingly seen as platforms to learn from multiple perspectives and experiences: professionals, patients and their families alike. Underlying this principle of inclusiveness is the idea that healthcare staff and service users hold unique and valuable knowledge that can inform learning, as well as the notion that learning is a social process that involves people actively reflecting on shared knowledge. Despite initiatives to facilitate inclusiveness, research shows that embracing and learning from diverse perspectives is difficult. Using the concept of ‘epistemic injustice’, pointing at practices of someone’s knowledge being unjustly disqualified or devalued, we analyze the way incident investigations are organized and executed with the aim to understand why it is difficult to embrace and learn from the multiple perspectives voiced in incident investigations. We draw from 73 semi-structured interviews with healthcare leaders, managers, healthcare professionals, incident investigators and inspectors, document analyses and ethnographic observations. Our analysis identified several structures in the incident investigation process, that can promote or hinder an actor’s epistemic contribution in the process of incident investigations. Rather than repeat calls to ‘involve more’ and ‘listen better’, we encourage policy makers to be mindful of and address the structures that can cause epistemic injustice. This can improve the outcome of incident investigations and can help to do justice to the lived experiences of the involved actors in the aftermath of a serious incident. PubDate: 2022-05-31 DOI: 10.1007/s10728-022-00447-3
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Abstract: Abstract After many policy attempts to tackle the persistent rise in the costs of health care, physicians are increasingly seen as potentially effective resource stewards. Frameworks including the quadruple aim, value-based health care and choosing wisely underline the importance of positive engagement of the health care workforce in reinventing the system–paving the way to real affordability by defining the right care. Current programmes focus on educating future doctors to provide ‘high-value, cost-conscious care’ (HVCCC), which proponents believe is the future of sustainable medical practice. Such programmes, which aim to extend population-level allocation concerns to interactions between an individual doctor and patient, have generated lively debates about the ethics of expanding doctors’ professional accountability. To empirically ground this discussion, we conducted a qualitative interview study to examine what happens when resource stewardship responsibilities are extended to the consulting room. Attempts to deliver HVCCC were found to involve inevitable trade-offs between benefits to the individual patient and (social) costs, medical uncertainty and efficiency, and between resource stewardship and trust. Physicians reconcile this by justifying good-value care in terms of what is in the best interest of individual patients–redefining the currency of value from monetary costs to a patient’s quality of life, and cost-conscious care as reflective medical practice. Micro-level resource stewardship thus becomes a matter of working reflexively and reducing wasteful forms of care, rather than of making difficult choices about resource allocation. PubDate: 2022-05-13 DOI: 10.1007/s10728-022-00446-4
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Abstract: Abstract Patients with advanced dementia are less likely than those with other terminal illnesses to receive palliative care. Due to the nature and course of dementia, there may be a failure to recognize the terminal stage of the disease. A possible and under-investigated explanation for this healthcare disparity is the healthcare practitioner who plays a primary role in end-of-life decision-making. Two potential areas that might impact provider decision-making are cognitive biases and moral considerations. In this analysis, we demonstrate how the cognitive biases and moral considerations of practitioners related to clinical decision-making are inherent in clinical practice and may impact on providers’ accuracy related to diagnostic and treatment related decision-making associated with patients with advanced dementia. Anchoring, default, availability, representativeness and framing biases are cognitive biases based on the "Two System Model" that relate to decision-making in end-of-life care. In patients with advanced dementia, those biases may result in a tendency to adhere to traditional mandatory care, involving an aggressive approach to care, which values saving lives at all costs, without taking into account the possible suffering and long-term consequences. Aspects such as moral sensitivity and moral courage play an important role in ethical decision-making related to advanced dementia. Investigations of clinical decision-making that include the cognitive biases and ethical considerations of practitioners might advance the comprehensive understanding of the clinical decision-making process related to care of patients with advanced dementia and promote the quality of care given to this population. PubDate: 2022-03-01 DOI: 10.1007/s10728-021-00429-x
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Abstract: Abstract While the value of early detection of dementia is largely agreed upon, population-based screening as a means of early detection is controversial. This controversial status means that such screening is not recommended in most national dementia plans. Some current practices, however, resemble screening but are labelled “case-finding” or “detection of cognitive impairment”. Labelled as such, they may avoid the ethical scrutiny that population-based screening may be subject to. This article examines conceptualizations of screening and case-finding. It shows how the definitions and delimitations of the concepts (the what of screening) are drawn into the ethical, political, and practical dimensions that screening assessment criteria or principles are intended to clarify and control (the how of screening, how it is and how it should be performed). As a result, different conceptualizations of screening provide the opportunity to rethink what ethical assessments should take place: the conceptualizations have different ethico-political implications. The article argues that population-based systematic screening, population-based opportunistic screening, and case-finding should be clearly distinguished. PubDate: 2021-12-01 DOI: 10.1007/s10728-021-00431-3
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Abstract: Abstract Clinical ethics can be viewed as a practical discipline that provides a structured approach to assist healthcare practitioners in identifying, analysing and resolving ethical issues that arise in practice. Clinical ethics can therefore promote ethically sound clinical and organisational practices and decision-making, thereby contributing to health organisation and system quality improvement. In order to develop students’ decision-making skills, as well as prepare them for practice, we decided to introduce a clinical ethics strand within an undergraduate medical curriculum. We designed a programme of clinical ethics activities for teaching and assessment purposes that involved using ethical frameworks to analyse hypothetical and real-life cases in uni- and inter- professional groups. In this paper, we draw on medical student feedback collected over 6 years to illustrate the appeal to students of learning clinical ethics. We also outline the range of benefits for students, healthcare organisations, and the field of clinical ethics arising from tomorrow’s doctors experiencing clinical ethics early in their training. We conclude by briefly reflecting on how including clinical ethics within tomorrow’s doctors curricular can secure and continue future engagement in clinical ethics support services in the UK, alongside the dangers of preparing students for organisational cultures that might not (yet) exist. We anticipate the findings presented in the paper will contribute to wider debates examining the impact of ethics teaching, and its ability to inform future doctors’ practice. PubDate: 2021-12-01 DOI: 10.1007/s10728-020-00403-z
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Abstract: Abstract Pharmaceutical sales representatives (PSRs) are one of the most frequently used drug information sources for physicians in both the United States and China. During face-to-face interactions, PSRs use various promotional strategies to impact the prescribing behavior. In the United States, PSRs provide physicians small gifts, free drug samples, and “sincere friendships”, whereas in China, they played an indispensable role in medical corruption over the past three decades. To cope with the undue influence of PSRs, both these countries have taken positive but insufficient measures to eliminate the effect thus far. By comparing the strategies of American and Chinese PSRs, it was found that building a friendly personal relationship with physicians in a relatively closed private environment (such as physician’s office) is a key factor to exert an individualized influence on physicians, even in different social backgrounds and healthcare contexts. Therefore, this essay suggests that it is necessary to limit the establishment of personal relationships and maintain a more professional interaction to reduce the personalized psychological and emotional influences on physicians’ professional judgment. To achieve this goal, it is proposed to transfer the physician-PSR interaction to a professional public space as a supplement to current countermeasures and suggestions. The presence of others and the possibility of third party participation will stimulate more ethical and reputational concerns. It is hoped that the increased transparency of the interaction will promote participants to consider more professional norms and mitigate the undue influence of PSRs’ individualized strategies. PubDate: 2021-11-11 DOI: 10.1007/s10728-021-00438-w
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Abstract: Abstract Information is clearly vital to public health, but the acquisition and use of public health data elicit serious privacy concerns. One strategy for navigating this dilemma is to build 'trust' in institutions responsible for health information, thereby reducing privacy concerns and increasing willingness to contribute personal data. This strategy, as currently presented in public health literature, has serious shortcomings. But it can be augmented by appealing to the philosophical analysis of the concept of trust. Philosophers distinguish trust and trustworthiness from cognate attitudes, such as confident reliance. Central to this is value congruence: trust is grounded in the perception of shared values. So, the way to build trust in institutions responsible for health data is for those institutions to develop and display values shared by the public. We defend this approach from objections, such as that trust is an interpersonal attitude inappropriate to the way people relate to organisations. The paper then moves on to the practical application of our strategy. Trust and trustworthiness can reduce privacy concerns and increase willingness to share health data, notably, in the context of internal and external threats to data privacy. We end by appealing for the sort of empirical work our proposal requires. PubDate: 2021-11-09 DOI: 10.1007/s10728-021-00436-y
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Abstract: Abstract The National Institute for Health and Care Excellence (NICE) is the UK’s primary healthcare priority-setting body, responsible for advising the National Health Service in England on which technologies to fund and which to reject. Until recently, the normative approach underlying this advice was described in a 2008 document entitled ‘Social value judgements: Principles for the development of NICE guidance’ (SVJ). In January 2020, however, NICE replaced SVJ with a new articulation of its guiding principles. Given the significant evolution of NICE’s methods between 2008 and 2020, this study examines whether this new document (‘Principles’) offers a transparent account of NICE’s current normative approach. It finds that it does not, deriving much of its content directly from SVJ and failing to fully acknowledge or explain how and why NICE’s approach has since changed. In particular, Principles is found to offer a largely procedural account of NICE decision-making, despite evidence of the increasing reliance of NICE’s methods on substantive decision-rules and ‘modifiers’ that cannot be justified in purely procedural terms. Thus, while Principles tells NICE’s stakeholders much about how the organisation goes about the process of decision-making, it tells them little about the substantive grounds on which its decisions are now based. It is therefore argued that Principles does not offer a transparent account of NICE’s normative approach (either alone, or alongside other documents) and that, given NICE’s reliance on transparency as a requirement of procedural justice, NICE does not in this respect satisfy its own specification of a just decision-maker. PubDate: 2021-11-08 DOI: 10.1007/s10728-021-00444-y
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Abstract: Abstract A particularly strong reason to vaccinate against transmittable diseases, based on considerations of harm, is to contribute to the realization of population-level herd immunity. We argue, however, that herd immunity alone is insufficient for deriving a strong harm-based moral obligation to vaccinate in all circumstances, since the obligation significantly weakens well above and well below the herd immunity threshold. The paper offers two additional harm-based arguments that, together with the herd immunity argument, consolidates our moral obligation. First, we argue that individuals should themselves aim not to expose others to risk of harm, and that this consideration becomes stronger the more non-vaccinated people there are, i.e., the further we are below herd immunity. Second, we elaborate on two pragmatic reasons to vaccinate beyond the realization of herd immunity, pertaining to instability of vaccination rates and population heterogeneity, and argue that vaccinating above the threshold should serve as a precautionary measure for buttressing herd immunity. We also show that considerations of harm have normative primacy in establishing this obligation over considerations of fairness. Although perfectly sound, considerations of fairness are, at worst secondary, or at best complementary to considerations of harm. PubDate: 2021-11-05 DOI: 10.1007/s10728-021-00437-x
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Abstract: Abstract Mobile phone-based applications (apps) can promote faster targeted actions to control COVID-19. However, digital contact tracing systems raise concerns about data security, system effectiveness, and their potential to normalise privacy-invasive surveillance technologies. In the absence of mandates, public uptake depends on the acceptability and perceived legitimacy of using technologies that log interactions between individuals to build public health capacity. We report on six online deliberative workshops convened in New South Wales to consider the appropriateness of using the COVIDSafe app to enhance Australian contact tracing systems. All groups took the position (by majority) that the protections enacted in the app design and supporting legislation were appropriate. This support is contingent on several system attributes including: the voluntariness of the COVIDSafe app; that the system relies on proximity rather than location tracking; and, that data access is restricted to local public health practitioners undertaking contact tracing. Despite sustained scepticism in media coverage, there was an underlying willingness to trust Australian governing institutions such that in principle acceptance of the new contact tracing technology was easy to obtain. However, tensions between the need to prove system effectiveness through operational transparency and requirements for privacy protections could be limiting public uptake. Our study shows that informed citizens are willing to trade their privacy for common goods such as COVID-19 suppression. But low case numbers and cautionary public discourses can make trustworthiness difficult to establish because some will only do so when it can be demonstrated that the benefits justify the costs to individuals. PubDate: 2021-10-26 DOI: 10.1007/s10728-021-00441-1
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Abstract: Abstract This article provides a critical comparative analysis of the substantive and procedural values and ethical concepts articulated in guidelines for allocating scarce resources in the COVID-19 pandemic. We identified 21 local and national guidelines written in English, Spanish, German and French; applicable to specific and identifiable jurisdictions; and providing guidance to clinicians for decision making when allocating critical care resources during the COVID-19 pandemic. US guidelines were not included, as these had recently been reviewed elsewhere. Information was extracted from each guideline on: 1) the development process; 2) the presence and nature of ethical, medical and social criteria for allocating critical care resources; and 3) the membership of and decision-making procedure of any triage committees. Results of our analysis show the majority appealed primarily to consequentialist reasoning in making allocation decisions, tempered by a largely pluralistic approach to other substantive and procedural values and ethical concepts. Medical and social criteria included medical need, co-morbidities, prognosis, age, disability and other factors, with a focus on seemingly objective medical criteria. There was little or no guidance on how to reconcile competing criteria, and little attention to internal contradictions within individual guidelines. Our analysis reveals the challenges in developing sound ethical guidance for allocating scarce medical resources, highlighting problems in operationalising ethical concepts and principles, divergence between guidelines, unresolved contradictions within the same guideline, and use of naïve objectivism in employing widely used medical criteria for allocating ICU resources. PubDate: 2021-10-26 DOI: 10.1007/s10728-021-00442-0
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Abstract: Abstract Current and past pandemics have several aspects in common. It is expected that all members of society contribute to beat it. But it is also clear that the risks associated with the pandemic are different for different groups. This makes that appeals to solidarity based on technocratic risk calculations are only partially successful. Objective ‘risks of transmission’ may, for example, be trumped by risks of letting down people in need of help or by missing out certain opportunities in life. In this paper we argue that a rapprochement of the insights of standpoint epistemology with pandemic science and pandemic policy making may be an important step toward making pandemic science more accurate and pandemic calls for solidarity more effective. PubDate: 2021-10-25 DOI: 10.1007/s10728-021-00443-z
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Abstract: Abstract Access to abortion care has been hugely affected by the COVID-19 pandemic. This has prompted several governments to permit the use of telemedicine for fully remote care pathways, thereby ensuring pregnant people are still able to access services. One such government is that of England, where these new care pathways have been publicly scrutinised. Those opposed to telemedical early medical abortion care have raised myriad concerns, though they largely centre on matters of patient safeguarding. It is argued that healthcare professionals cannot adequately carry out their safeguarding duties if the patient is not in the room with them. These concerns lack empirical support. Emerging evidence suggests that safeguarding processes may, in fact, be more effective within telemedical abortion care pathways. In this article, we address two specific safeguarding concerns: (1) that a remote consultation prevents a healthcare professional from identifying instances of abuse, and (2) that healthcare professionals cannot reliably confirm the absence of coercion during a remote consultation. We demonstrate that such concerns are misplaced, and that safeguarding may actually be improved in telemedical care pathways as victims of abuse may find it easier to engage with services. It is inevitable that some individuals will fall through the net, but this is unavoidable even with in-person care and thus does not constitute a strong critique of the use of telemedicine in abortion care. These safeguarding concerns set aside, then, we argue that the current approval that enables telemedical early medical abortion should be afforded permanence. PubDate: 2021-10-23 DOI: 10.1007/s10728-021-00439-9
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