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)

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)

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)