Background Levels of care deemed as inappropriate generate moral distress among nurses and other intensive care professionals. Inappropriate levels of care and related moral distress are frequently broached as individual and psychological phenomena, reduced to how individuals feel and think about specific cases. However, this tends to obscure the complex context in which these situations occur, and on which healthcare professionals can act. There is thus a need for a more contextual and team-level lens on inappropriate levels of care. Research (...) objective This study aims to explore and understand the issue of inappropriate levels of care in an intensive care unit (ICU) through a contextual and team-level lens. Research design Semi-structured interviews were conducted with nurses, respiratory therapists, and intensivists. Thematic analysis focused on understanding the causes and consequences of inappropriate levels of care, as well as potential avenues for improvement. This study is part of a 5-phase participatory living lab project on inappropriate levels of care conducted in the ICU of a Montreal (Quebec, Canada) hospital. This paper relates the initial phases of the project, focusing on understanding the issue, with reported events spanning from June 2022 to May 2023. Ethical considerations Ethics approval was sought and granted by the Research Ethics Board of the CIUSSS de l’Est-de-l’Île-de-Montréal. Findings/Discussion Five broad themes intrinsically related to the phenomenon of inappropriate levels of care were explored with and by participants: (1) the process of determining levels of care, (2) the distinction between appropriate and inappropriate levels of care, (3) causes of inappropriate levels of care, (4) consequences of inappropriate levels of care and (5) potential avenues for improvement. Conclusion This research provides a comprehensive understanding of inappropriate levels of care in the ICU and emphasizes the relevance of team-level explorations of complex ethical issues. (shrink)

The concept of legitimacy is often used and emphasized in the context of setting limits in health care, but rarely described is what is actually meant by its use. Moreover, it is seldom explicitly stated how health-care workers can contribute to the matter, nor what weight should be apportioned to their viewpoints. Instead the discussion has focused on whether they should take on the role of the patients’ advocate or that of gatekeeper to the society’s resources. In this article, we (...) shed light on the role of health-care workers in limit setting and how their conferred legitimacy may support subordinators’ (i.e. citizens’) conferred legitimacy. We argue that health-care workers have an important role to play as both moral and political agents in limit setting, and delineate normative conditions that justify and facilitate health-care workers in conferring legitimacy on this kind of decision. Their role and potential impact on political limit setting does not—theoretically—affect the idea of democratic legitimacy negatively. Rather, as we suggest, by designing for limit-setting policymaking accordingly, health-care workers, as well as citizens, are more justified in conferring democratic legitimacy to health-care limit-setting decisions than if these concerns were not addressed. (shrink)

BackgroundWhen rationing health care, a commonly held view among ethicists is that there is no ethical difference between withdrawing or withholding medical treatments. In reality, this view does not generally seem to be supported by practicians nor in legislation practices, by for example adding a ‘grandfather clause’ when rejecting a new treatment for lacking cost-effectiveness. Due to this discrepancy, our objective was to explore physicians’ and patient organization representatives’ experiences- and perceptions of withdrawing and withholding treatments in rationing situations of (...) relative scarcity.MethodsFourteen semi-structured interviews were conducted in Sweden with physicians and patient organization representatives, thematic analysis was used.ResultsParticipants commonly express internally inconsistent views regarding if withdrawing or withholding medical treatments should be deemed as ethically equivalent. Participants express that in terms of patients’ need for treatment withholding and withdrawing should be deemed ethically equivalent. However, in terms of prognostic differences, and the patient-physician relation and communication, there is a clear discrepancy which carry a moral significance and ultimately makes withdrawing psychologically difficult for both physicians and patients, and politically difficult for policy makers.ConclusionsWe conclude that the distinction between withdrawing and withholding treatment as unified concepts is a simplification of a more complex situation, where different factors related differently to these two concepts. Following this, possible policy solutions are discussed for how to resolve this experienced moral difference by practitioners and ease withdrawing treatments due to health care rationing. Such solutions could be to have agreements between the physician and patient about potential future treatment withdrawals, to evaluate the treatment’s effect, and to provide guidelines on a national level. (shrink)

In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve “good palliative care”. The aim of this study has been to analyse how experts make sense of the development and the current state of palliative care. Departing from this aim, focus has been on identifying how personal experiences of ‘the self’ are intertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliative care. Twelve (...) qualitative interviews were conducted. Four scripts were identified after analysing the empirical material: 1. script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain definitions. The findings of this study illustrate how experts in complex ways intertwine experiences of ‘the self’ with meta-levels concepts in order to make sense of the field of palliative care. The participants did not endorse one “right way” of “good” deaths. Instead, palliative care was considered to be located in a complex state where the historical development, consisting of both desirable ideals, death denials and lack of guidelines, and more recent developments of strives towards universal concepts, “improvement” and increased bureaucracy altogether played a significant role for how palliative care has developed and is organised and conducted today. (shrink)

In recent years, there has been tension between farmers and the Dutch government regarding sustainability policy (in the efforts to reduce the harm caused by manure surplus) and how implementing this policy affects farmers (in the form of justice concerns). We interviewed Dutch farmers to uncover how they view manure policy. We identified four types of injustices: procedural, contributive, distributive, and intergenerational. We propose that a multi-tiered approach is required to overcome these kinds of ‘wicked problems’, avoid paralysis from lack (...) of action, and overcome the flaws by overestimating the effectiveness of top-down policy. (shrink)

This article reflects on the contribution that stakeholder involvement could give to circular bioeconomy transformation (CBE). By comparing argument for stakeholder involvement in literature as well as on our own experiences in six stakeholder involvement workshops, we argue that it is probably unrealistic to fully achieve both normative and co-design goals in a single workshop. Furthermore, stakeholder involvement can help to acquire insight into dependencies in the market and offer an opportunity to connect people to deal with them. Therefore we (...) propose for future stakeholder involvement initiatives for CBE to focus on (1) identify relationships of dependency which make it hard for players in the market to change, (2) develop strategies to change while mitigating the detrimental effects on already existing relationships and (3) gradually breaking down relationships and building new ones that support CBE. (shrink)

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. (shrink)

Every year medical researchers make contact with a large number of cancer survivors with the aim of evaluating cancer treatment. For this reason we decided to investigate how Swedish cancer survivors perceived their participation in research studies focusing on the long-term consequences of being a survivor of gynaecological or urinary bladder cancer. Data were collected by means of two study-specific postal questionnaires, both consisting of questions covering physical symptoms, well-being and the experience of being a cancer survivor. Both questionnaires also (...) included questions evaluating the participants’ experience of being research subjects. The questionnaires were developed in close co-operation with cancer survivors. The study population consisted of 1068 cancer survivors. Of these, 95% (n=1003) reported that they thought the study was valuable and 54% (n=559) that they had been positively affected by participating. Four per cent (n=39) expressed that they had been negatively affected by their participation in the study. The vast majority of the cancer survivors thought that participating in their particular study was valuable. (shrink)

Background Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses’ prioritizations in their work to achieve well-being and health for nursing home residents. Aim The aim of this study was to explore nursing home nurses’ priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic. Research design, participants, and research context We conducted a (...) qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. Ethical considerations Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649). Findings We identified an overarching theme—nursing home nurses struggling on multiple fronts, “just do it”—and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives’ expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing. Conclusions Nurses’ priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses’ priorities. Nursing home nurses need organizational and managerial support to prioritize. (shrink)

Several quantitative studies (e.g. Kidd & Castano, 2013a; Djikic et al., 2013) have shown a positive correlation between literary reading and empathy. However, the literary nature of the stimuli used in these studies has not been defined at a more detailed, stylistic level. In order to explore the stylistic underpinnings of the hypothesized link between literariness and empathy, we conducted a qualitative experiment in which the degree of stylistic foregrounding was manipulated. Subjects (N = 37) read versions of Katherine Mansfield's (...) 'The Fly', a short story rich in foregrounding, while marking striking and evocative passages of their choosing. Afterwards, they were asked to select three markings and elaborate on their experiences in writing. One group read the original story, while the other read a 'non-literary' version, produced by an established author of suspense fiction for young adults, where stylistic foregrounding was reduced. We found that the non-literary version elicited significantly more (p < 0.05) explicitly empathic responses than the original story. This finding stands in contradiction to widely accepted assumptions in recent research, but can be assimilated in alternative models of literariness and affect in literary reading (e.g. Cupchik et al., 1998). We present an analysis of the data with a view to offering more than one interpretation of the observed effects of stylistic foregrounding. (shrink)

Background In 2001 a report on the provision of clinical ethics support in UK healthcare institutions identified 20 clinical ethics committees. Since then there has been no systematic evaluation or documentation of their work at a national level. Recent national surveys of clinical ethics services in other countries have identified wide variation in practice and scope of activities. Objective To describe the current provision of ethics support in the UK and its development since 2001. Method A postal/electronic questionnaire survey administered (...) to the chairs of all 82 clinical ethics services registered with the UK Clinical Ethics Network in July 2010. Results Response rate was 62% with the majority of responding services situated in acute trusts. All services included a clinical ethics committee with one service also having a clinical ethicist. Lay members were present in 72% of responding committees. Individual case consultation has increased since 2001 with 29% of chairs spending more than 50% of their time on this. Access to and involvement in the process of case consultation is less for patients and families than for clinical staff. There is wide variation in committee processes and levels of institutional support. Over half of the responding committees undertook some form of evaluation. Conclusion Clinical ethics services in the UK are increasing as is their involvement in case consultation. However, the significant variation in committee processes suggests that further qualitative research is needed to understand how these committees function and the role they play in their institution. (shrink)

In spite op compulsory voting, the number of non-voters increased at the last general elections in Belgium to 7.3 per cent. This evolution can largely be explained by demographic factors. The number of blank or invalid voters reaches nearly the same level. Concerning this form of political non-participation, we noticed considerable differences occur between the types of elections due to factors such as the importance and the proximity of the proper institution, the social distance between candidate and citizen and the (...) main issue of the elections.The analysis of both phenomena over time at the level of the individual voters based on surveys shows that electoral absenteeism is rather accidental, white blanc and invalid voting is more permanent. From the analysis of absenteeism and blanc and invalid voting emerge on the one hand socio-economic factors which jeopardize electoral participation in a direct or indirect way, and on the other hand, attitudes and behaviour reflecting political indifference, alienation and hostility. (shrink)

This study focuses on how moral aspects of purpose shape collaborative processes. It does so by analyzing the unfolding of 21 relationships between four nonprofits and their funders using a framework based on French pragmatist sociology to help uncover the deeply held, ideological and moral beliefs that underscore assumptions about what the overarching purpose of a collaborative effort is or should be. This study contributes to the literature on single and cross-sectoral collaboration by showing that the way partners handle and (...) reconcile differences about purpose is related to the forms of agreement likely to be achieved. It also suggests that certain forms of agreement are inherently more enduring than others. Taken as a whole, this study provides some plausible explanations as to why so many collaborations fail despite their seeming benefits for all the parties involved. (shrink)

While justifications are used frequently by young children in their everyday interactions, their use has not been examined to any great extent. This article examines the interactional phenomenon of justification used by young children as they manage social organization of their peer group in an early childhood classroom. The methodological approaches of conversation analysis and membership categorization analysis were used to analyse video-recorded and transcribed interactions of young children in a preparatory classroom in a primary school in Australia. The focus (...) is an episode that occurred within the play area of the classroom and involved a dispute of ownership relating to a small, wooden plank. Justifications were frequent occurrences as the young participants drew upon justificatory devices to support their stances. The justifications related to the concepts of ownership and were used by those engaged in the particular dispute to support their positions and provide reasons for their actions. Four types of justificatory responses using child-constructed rules are highlighted. They are: justification based on the rule of transferred ownership; the rule of first possession; rules associated with custodianship; and the rule of third-party verification. The justifications are practices that work to build and reinforce individual children's status within the group, which in turn contributes to the social order of the classroom. (shrink)

Despite its profound importance for individuals and populations, children’s mental health remains under-appreciated as a public policy priority, to a degree that violates children’s rights. Using a working definition of policymaking as collective ethical decision-making for the one and the many, we elaborate by describing an individual child’s story and reviewing the pertinent population health research evidence. We then outline three central public health ethical challenges: addressing the high prevalence and impact of childhood mental disorders; addressing the avoidable social adversities (...) that underlie many childhood mental disorders; and addressing stark shortfalls in prevention and treatment services for children. We end with discussing opportunities for progress, including addressing the attendant children’s rights issues. (shrink)

This paper advances the conception of social entrepreneurs as caring entrepreneurs. We argue that the care ethics of social entrepreneurs, implying the pursuit of caring goals through caring processes, can be challenged when they engage in the process of scaling up their ventures. We propose that social entrepreneurs can sustain their care ethics as the essential dimension of their venture only if they are able to build a caring enterprise. Organizational care designates the set of organizing principles that facilitate the (...) embedding of care ethics at an organizational level, beyond the imprinting induced by social entrepreneurs’ personal ethics. (shrink)

In this article, we conceptualize the under investigated and under theorized relationship between intimate partner violence (IPV) and business responsibility. As an urgent social issue, IPV—understood as abuse of power within the context of an intimate partner relationship, mainly perpetrated by men and involving a pattern of behavior—has been studied for decades in many disciplines. A less common yet vital research perspective is to examine IPV as it relates to the business and to ask how organizations should engage with IPV. (...) In response to this question, we contribute a framework drawing from two distinctions in the business responsibility scholarship: the assumed role of the organization (responsibility to the firm/market; responsibility to the broader socio-political-economic environment); and the second focused on the approach to conceptualizing ethics (justice/fairness; ethics of care). Thus, we explicate four approaches to business responsibility and IPV, which serve the purposes of mapping three selected contributions, identifying limitations of these approaches, and opening up future research opportunities. (shrink)

Introduction : kith, kin, and family / Sally Haslanger and Charlotte Witt Adoption and its progeny : rethinking family law, gender, and sexual difference / Drucilla Cornell Open adoption is not for everyone / Anita L. Allen Methods of adoption : eliminating genetic privilege / Jacqueline Stevens Several steps behind : gay and lesbian adoption / Sarah Tobias A child of one’s own : property, progeny, and adoption / Janet Farrell Smith Family resemblances : adoption, personal identity, and genetic (...) essentialism / Charlotte Witt Being adopted and being a philosopher : exploring identity and the "desire to know" differently / Kimberly Leighton Real othering : the metaphysics of maternity in children’s literature / Shelley Park Accidents and contingencies of love / Songsuk Hahn ; comments by Harry Frankfurt Abuse and neglect, foster drift, and the adoption alternative / Elizabeth Bartholet Feminism, race, and adoption policy / Dorothy Roberts Racial randomization / Hawley Fogg-Davis You Mixed?: racial identity without racial biology / Sally Haslanger. (shrink)

The provision of informed consent is a prerequisite for inclusion of a patient in a clinical research project. In some countries, the legislation on clinical research authorizes a third person to provide informed consent if the patient is unable to do so directly . This is the case during acute stroke, when the symptoms may prevent the patient from providing informed consent and thus require a third party to be approached. Identification of factors associated with the medical team’s decision to (...) resort to surrogate consent may help the care team during the inclusion process and enable the patient’s family circle to be better informed about providing surrogate consent. (shrink)

Ongoing changes in many Western countries have resulted in more healthcare services being transferred to municipalities and taking place in patients’ homes. This greatly impacts nurses’ work in home care, making their work increasingly diverse and demanding. In this study, we explore home‐care nursing through a critical discourse analysis of focus group interviews with home‐care nurses. Drawing on insights from positioning theory, we discuss the content and delineation of their work and the interweaving of contextual changes. Nurses hold a crucial (...) position in home healthcare, particularly in ensuring care for sicker patients with complex needs. Assessing health needs, performing advanced care, and at the same time, providing customized solutions in various homes were identified as distinctive for home‐care nurses’ work. Changes have made nurses’ work become driven by comprehensive tasks and acute medical needs that require much of their competence and time. Urgent care seems to take precedence in nurses’ work, leaving less time and attention for other tasks such as conversations and support for coping with everyday life. This underlines the need to investigate and discuss the content and scope of nurses’ work to help shape the further development of home‐care nursing. (shrink)

This article analyzes the published testimonies of French shipwreck survivors to trace the emergence of a settler colonial ideal in nineteenth-century France. Emerging from the encounters of French survivors with the men of the Anglo-World, this ideal encouraged compassionate, paternalist authority as a solution to the ongoing conflict of paternal despotism and disorderly fraternal freedom in France. The community of sentiment imagined in shipwreck testimonies was gendered and racialized, cultivating white compassion across colonial empires. These transimperial affective ties allowed the (...) settler colonial ideal to persist in the early twentieth century, despite the abandonment of further projects for French settlement. (shrink)

Internationally, primary health care has in recent years gained a more central position in political priorities to ensure sustainable health care for the population. Thus, more people receive health care locally and in their own homes, where home‐care nursing plays a large role. In this article, we investigate how home‐care nursing is articulated and made visible in contemporary Norwegian policy documents. The study is a Fairclough‐inspired critical discourse analysis seeking to uncover the position of nursing in the prevailing political ideologies (...) on current primary health care. In the documents, we identified several complementary and conflicting understandings about home‐care nursing. Home‐care nursing is presented as a basic part of a municipality's health services, but at the same time, its content and contribution are unclear and almost invisible. We argue that the absence of nursing leads to significant perspectives being left out and tie this to the fact that some patient groups and tasks seem to be disadvantaged. The political placement of home‐care nursing in the health‐care landscape is thus not just about nursing as a professional practice but also concerns fundamental care values in our society in relation to disadvantaged groups and work tasks. (shrink)

Over the last two decades, we have begun to gain traction on the neural systems that support creative cognition. Specifically, a converging body of evidence from various domains has demonstrated that creativity arises from the interaction of two large-scale systems in the brain: Whereas the default network (DN) is involved in internally-oriented generation of novel concepts, the executive control network (ECN) exerts top-down control over that generative process to select task-appropriate output. In addition, the salience network (SN) regulates switching between (...) those networks in the course of creative cognition. In contrast, we know much less about the workings of these large-scale systems in support of creativity under extreme conditions, although that is beginning to change. Specifically, there is growing evidence from systems neuroscience to demonstrate that the functioning and connectivity of DN, ECN and SN are influenced by stress—findings that can be used to improve our understanding of the behavioural effects of stress on creativity. Toward that end, we review findings from the neuroscience of creativity, behavioural research on the impact of stress on creativity, and the systems-level view of the brain under stress to suggest ways in which creativity might be affected under extreme conditions. Although our focus is largely on acute stress, we also touch on the possible impact of chronic stress on creative cognition. (shrink)

Working memory is the system responsible for maintaining and manipulating information, in the face of ongoing distraction. In turn, WM span is perceived to be an individual-differences construct reflecting the limited capacity of this system. Recently, however, there has been some evidence to suggest that WM capacity can increase through training, raising the possibility that training can functionally alter the neural structures supporting WM. To address the hypothesis that the neural substrates underlying WM are targeted by training, we conducted a (...) meta-analysis of functional magnetic resonance imaging studies of WM training using Activation Likelihood Estimation. Our results demonstrate that WM training is associated exclusively with decreases in blood oxygenation level-dependent responses in clusters within the fronto-parietal system that underlie WM, including the bilateral inferior parietal lobule, middle and superior frontal gyri, and medial frontal gyrus bordering on the cingulate gyrus. We discuss the various psychological and physiological mechanisms that could be responsible for the observed reductions in the BOLD signal in relation to WM training, and consider their implications for the construct of WM span as a limited resource. (shrink)

This paper explores ethical concerns arising in healthcare integration. We argue that integration is necessary imperative for meeting contemporary and future healthcare challenges, a far stronger evidence base for the conditions of its effectiveness is required. In particular, given the increasing emphasis at the policy level for the entire healthcare infrastructure to become better integrated, our analysis of the ethical challenges that follow from the logic of integration itself is timely and important and has hitherto received insufficient attention. We evaluated (...) an educational intervention which aims to improve child health outcomes by making transitions between primary to secondary care more efficient, ensuring children and parents are better supported throughout. The programme provided skills for trainee paediatricians and general practitioners (GPs) in co-designing integrated clinical services. The key ethical challenges of integrated care that arose from a clinical perspective are: professional identity and autonomy in an integrated working environment; the concomitant extent of professional responsibility in such an environment; and the urgent need for more evidence to be produced on which strategies for integrating at scale can be based. From our analysis we suggest a tentative way forward, viewed from a normative position broadly situated at the intersection of deontology and care ethics. We adopt this position because the primary clinical ethical issues in the context of integrated care concern: how to ensure that all duties of care to individual patients are met in a newly orientated working environment where clinical responsibility may be ambiguous; and the need to orientate care around the patient by foregrounding their autonomous preferences and ensuring good patient clinician relationships in clinical decision-making. (shrink)

This paper reports on an ongoing ARC Discovery Project that is conducting design research into learning in collaborative virtual worlds (CVW).The paper will describe three design components of the project: (a) pedagogical design, (b)technical and graphics design, and (c) learning research design. The perspectives of each design team will be discussed and how the three teams worked together to produce the CVW. The development of productive failure learning activities for the CVW will be discussed and there will be an interactive (...) demonstration of the project's CVW. (shrink)