Ethics designates a structured process by which important human values and meanings of life are understood and tackled. Therein, the ability to discuss openly and reflect on (aka deliberation) understandings of moral problems, on solutions to these problems, and to explore what a meaningful resolution could amount to is highly valued. However, the indicators of what constitutes a high-quality ethical deliberation remain vague and unclear. This article proposes and develops a pragmatist approach to evaluate the quality of deliberation. Deliberation features (...) three important moments: (1) broadening and deepening the understanding of the situation, (2) envisioning action scenarios, (3) coming to a judgment based on the comparative evaluation of scenarios. In this paper, we propose seven criteria to evaluate ethical deliberations: (1) collaborative diversity, (2) experiential literacy, (3) organization of experiences, (4) reflective capacity to instrumentalize the experiences of others, (5) interactional creativity, (6) openness of agents, (7) quality of the reformulation of scenarios. These criteria are explained and applied to the three moments of deliberation. Based on these criteria, three kinds of outcomes for deliberations are identified and discussed: good ethical deliberations, partial ethical deliberations, bad ethical deliberations. Our proposal will guide researchers and practitioners interested in the evaluation of the quality of ethical deliberations. It provides a reference tool that allows them to identify the possible limitations of a deliberation and to implement actions aimed at correcting these limitations in order to achieve the desired qualitative objectives. (shrink)

Background Rare diseases are generally poorly understood from scientific and medical standpoints due, to their complexity and low prevalence. As a result, individuals living with rare diseases struggle to obtain timely diagnoses and suitable care. These clinical difficulties add to the physical and psychological impacts of living with chronic and often severe medical conditions. From the standpoint of pragmatist ethics, the morally problematic situations that adults living with rare diseases experience matter crucially. However, there is little known about these experiences.Methods (...) A survey study was conducted with 121 adults living with rare diseases in Québec, Canada, to identify morally problematic situations encountered in the healthcare system and everyday life as part of a participatory action research project. Morally problematic situations elicited internal tensions and constraints to agency.Results Adults living with rare diseases experienced morally problematic situations of stigmatization, disbelief, and sometimes abuse in the healthcare system. These situations were compounded by diagnostic delays, inadequate care, and suboptimal follow-up, and led some individuals to opt-out of medical care. In their personal lives, these individuals sometimes found themselves in situations of physical and financial dependency. They often also had to give up professional occupations, academic training, or life projects.Conclusions Adults living with rare diseases experience important morally problematic situations navigating the healthcare system and their everyday lives, some of which could be alleviated through interventions developed through future participatory action research. (shrink)

As a field, ethics is driven by the desire to help guide human life and human activities. Yet, what are the standards or guideposts indicating that a given policy or practice change actually contributes meaningfully to such desires and aspirations? In other words, how do we know if we have achieved meaningful ethical outcomes and enactment processes? Unfortunately, there are many examples of ethically oriented actions that were well intentioned but carried out in a way that undermined some of the (...) values they intended on promoting or led to unexpected undesirable outcomes. In this paper, building on an account of ethics as a pragmatist pursuit of deliberative wisdom, I identify and discuss four procedural guideposts which can help evaluate if a process of inquiry is an ethical one oriented toward human flourishing. First, situational awareness and continuity designates the need to keep in sight the nature of the situation at stake to ensure that the enactment process does not derail from a cardinal human flourishing orientation. Second, a meaningful ethical enactment should distribute opportunities for participation such that it is not only one’s autonomy (e.g., the ethicist) that is developed and exercised but that positive relationships are also fostered through the growth of others. Third, enactments must strive for more than simple avoidance of encroachment of wrongs but aim for the promotion of praiseworthy practices that pursue what is envisioned as being the better and most compelling vision. Fourth, an ethics process should be conducive of personal growth and mutual learning. (shrink)

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)

Ethics is often viewed as the elaboration of and compliance to norms, a.k.a. as the deductive model of ethics. This is well illustrated by the mainstream development of codes of ethics and ethics committees in the healthcare setting and beyond. Drawing upon a recent synthesis of pragmatist insights on the nature of ethics as well as contemporary scholarship on human flourishing, I explain how ethics is not primarily about the compliance of experience and agency to preset norms but about liberation (...) and empowerment within a process of existential meaning-making. This point is made in the context of two important tasks of ethics: (1) understanding moral problems and (2) providing guidance for solving such problems. (shrink)