This article focuses on examining the situation of organ trafficking in Africa from the aspect of pragmatist ethics. In the mainstream thought, the broader ethical dilemma of organ trafficking is viewed within the moral contestation of altruism as a rule for organ procurement and the resulting worldwide organ shortage. The incapability of altruistic transplant orthodoxy to serve as an applicable foundation for a public policy is considered as a reason for organ trafficking. In fact, to battle organ trafficking, utilitarian-inclined studies (...) suggest organ selling, compensated donations, and non-directed paid donations as practical alternatives. However, when investigating the context of organ trafficking in Africa, the issue goes beyond the mere moral dilemma of altruism and organ shortage. In the region, organ trafficking is rooted within more systemic, structural, socio-economic, and political problems, grounded in the abuse of transplantation, and connected to transplant tourism and migration, which needs a pragmatic multimodal solutions than the earlier mainstream pathways. In pragmatist ethics, the moral assessment and solutions to the underlying problems depend on the context wherein the moral problem arises. Pragmatist ethics does not stick to absolute moral theories; instead, it focuses on the relevant assessment of the felt moral problem in a given context and aims at seeking solutions afresh. Thus, in the subsequent sections, this article looks at the context of organ trafficking in Africa and reassesses it by incorporating it into the ethical debates of transplantation and organ procurements and trading. The final part of this article reflects on solutions with the reconsideration of the context of transplantation and organ trafficking in the region. (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)

In this article, we explore alternative conflict resolution strategies to assist families and clinicians in cases of intractable dissent in paediatric health care decision-making. We focus on the ethical and legal landscape using cases from the Australian jurisdiction in New South Wales, while referencing some global sentinel cases. We highlight a range of alternative means of addressing conflict, including clinical ethics support, and contrast and contextualise facilitative or interest-based mediation, concluding that legal intervention via the courts can be protracted and (...) distressing and should be a ‘last resort’. We acknowledge many might view this as the current status quo, but we go further to recommend strategies optimal for all parties to recognise early signs of conflict and prevent its harmful escalation. While more empirical research is needed, we contend that interest-based mediation may be a valuable adjunctive method of conflict resolution. If judiciously distinguished from and utilised with clinical ethical support, it can be an effective tool to address dissent and its negative sequelae in paediatric healthcare decision-making. (shrink)

Volume 19, Issue 11, November 2019, Page 71-73.

Moral distress forms a major threat to the well-being of healthcare professionals, and is argued to negatively impact patient care. It is associated with emotions such as anger, frustration, guilt, and anxiety. In order to effectively deal with moral distress, the concept of moral resilience is introduced as the positive capacity of an individual to sustain or restore their integrity in response to moral adversity. Interventions are needed that foster moral resilience among healthcare professionals. Ethics consultation has been proposed as (...) such an intervention. In this paper, we add to this proposition by discussing Moral Case Deliberation (MCD) as a specific form of clinical ethics support that promotes moral resilience. We argue that MCD in general may contribute to the moral resilience of healthcare professionals as it promotes moral agency. In addition, we focus on three specific MCD reflection methods: the Dilemma Method, the Aristotelian moral inquiry into emotions, and CURA, a method consisting of four main steps: Concentrate, Unrush, Reflect, and Act. In practice, all three methods are used by nurse ethicists or by nurses who received training to facilitate reflection sessions with these methods. We maintain that these methods also have specific elements that promote moral resilience. However, the Dilemma Method fosters dealing well with tragedy, the latter two promote moral resilience by including attention to emotions as part of the reflection process. We will end with discussing the importance of future empirical research on the impact of MCD on moral resilience, and of comparing MCD with other interventions that seek to mitigate moral distress and promote moral resilience. (shrink)

Background Increasing social pluralism adds to the already existing variety of heterogeneous moral perspectives on good care, health, and quality of life. Pluralism in social identities is also connected to health and care disparities for minoritized patient (i.e. care receiver) populations, and to specific diversity-related moral challenges of healthcare professionals and organizations that aim to deliver diversity-responsive care in an inclusive work environment. Clinical ethics support (CES) services and instruments may help with adequately responding to these diversity-related moral challenges. However, (...) although various CES instruments exist to support healthcare professionals with dealing well with morally challenging situations in healthcare, current tools do not address challenges specifically related to moral pluralism and intersectional aspects of diversity and social justice issues. This article describes the content and developmental process of a novel CES instrument called the Diversity Compass. This instrument was designed with and for healthcare professionals to dialogically address and reflect on moral challenges related to intersectional aspects of diversity and social justice issues that they experience in daily practice. Methods We used a participatory development design to develop the Diversity Compass at a large long-term care organization in a major city in the Netherlands. Over a period of thirteen months, we conducted seven focus groups with healthcare professionals and peer-experts, carried out five expert interviews, and facilitated four meetings with a community of practice consisting of various healthcare professionals who developed and tested preliminary versions of the instrument throughout three cycles of iterative co-creation. Results The Diversity Compass is a practical, dialogical CES instrument that is designed as a small booklet and includes an eight-step deliberation method, as well as a guideline with seven recommendations to support professionals with engaging in dialogue when they are confronted with diversity-related moral challenges. The seven recommendations are key components in working toward creating an inclusive and safe space for dialogue to occur. Conclusions The Diversity Compass seeks to support healthcare professionals and organizations in their efforts to facilitate awareness, moral learning and joint reflection on moral challenges related to diversity and social justice issues. It is the first dialogical CES instrument that specifically acknowledges the role of social location in shaping moral perspectives or experiences with systemic injustices. However, to make healthcare more just, an instrument like the Diversity Compass is not enough on its own. In addition to the Diversity Compass, a systemic and structural approach to social justice issues in healthcare organizations is needed in order to foster a more inclusive, safe and diversity-responsive care and work environment in health care organizations. (shrink)

In pluralist societies, stakeholders in healthcare may have different experiences of and moral perspectives on health, well-being, and good care. Increasing cultural, religious, sexual, and gender diversity among both patients and healthcare professionals requires healthcare organizations to address these differences. Addressing diversity, however, comes with inherent moral challenges; for example, regarding how to deal with healthcare disparities between minoritized and majoritized patients or how to accommodate different healthcare needs and values. Diversity statements are an important strategy for healthcare organizations to (...) define their normative ideas with respect to diversity and to establish a point of departure for concrete diversity approaches. We argue that healthcare organizations ought to develop diversity statements in a participatory and inclusive way in order to promote social justice. Furthermore, we maintain that clinical ethicists can support healthcare organizations in developing diversity statements in a more participatory way by fostering reflective dialogues through clinical ethics support. We will use a case example from our own practice to explore what such a developmental process may look like. We will critically reflect on the procedural strengths and challenges as well as on the role of the clinical ethicist in this example. (shrink)

Teaching responsible conduct of research (RCR) to PhD students is crucial for fostering responsible research practice. In this paper, we show how the use of Moral Case Deliberation—a case reflection method used in the Amsterdam UMC RCR PhD course—is particularity valuable to address three goals of RCR education: (1) making students aware of, and internalize, RCR principles and values, (2) supporting reflection on good conduct in personal daily practice, and (3) developing students’ dialogical attitude and skills so that they can (...) deliberate on RCR issues when they arise. What makes this method relevant for RCR education is the focus on values and personal motivations, the structured reflection on real experiences and dilemmas and the cultivation of participants’ dialogical skills. During these structured conversations, students reflect on the personal motives that drive them to adhere to the principles of good science, thereby building connections between those principles and their personal values and motives. Moreover, by exploring personal questions and dilemmas related to RCR, they learn how to address these with colleagues and supervisors. The reflection on personal experiences with RCR issues and questions combined with the study of relevant normative frameworks, support students to act responsibly and to pursue RCR in their day-to-day research practice in spite of difficulties and external constraints. (shrink)

BackgroundClinical ethics support aims to support health care professionals in dealing with ethical issues in clinical practice. Although the prevalence of CES is increasing, it does meet challenges and pressing questions regarding implementation and organization. In this paper we present a specific way of organizing CES, which we have called integrative CES, and argue that this approach meets some of the challenges regarding implementation and organization.MethodsThis integrative approach was developed in an iterative process, combining actual experiences in a case study (...) in which we offered CES to a team that provides transgender health care and reflecting on the theoretical underpinnings of our work stemming from pragmatism, hermeneutics and organizational and educational sciences.ResultsIn this paper we describe five key characteristics of an integrative approach to CES; 1. Positioning CES more within care practices, 2. Involving new perspectives, 3. Creating co-ownership of CES, 4. Paying attention to follow up, and 5. Developing innovative CES activities through an emerging design.ConclusionsIn the discussion we compare this approach to the integrated approach to CES developed in the US and the hub and spokes strategy developed in Canada. Furthermore, we reflect on how an integrative approach to CES can help to handle some of the challenges of current CES. (shrink)

The prevalence of Clinical ethics support services is increasing. Yet, questions about what quality of CES entails and how to foster the quality of CES remain. This paper describes the development of a national network, which aimed to conceptualize and foster the quality of CES in the Netherlands simultaneously. Our methodology was inspired by a responsive evaluation approach which shares some of our key theoretical presuppositions of CES. A responsive evaluation methodology engages stakeholders in developing quality standards of a certain (...) practice, instead of evaluating a practice by predefined standards. In this paper, we describe the relationship between our theoretical viewpoint on CES and a responsive evaluation methodology. Then we describe the development of the network and focus on three activities that exemplify our approach. In the discussion, we reflect on the similarities and differences between our approach and other international initiatives focusing on the quality of CES. (shrink)

Evaluation of clinical ethical case consultations has been discussed as an important research task in recent decades. A rigid framework of evaluation is essential to improve quality of consultations and, thus, quality of patient care. Different approaches to evaluate those services appropriately and to determine adequate empirical endpoints have been proposed. A key challenge is to provide an answer to the question as to which empirical endpoints—and for what reasons—should be considered when evaluating the quality of a service. In this (...) paper, we argue for an approach that adopts the role of ethics consultants as its point of departure. In a first step, we describe empirical and ethical characteristics of evaluating clinical ethical case. We show that the mode of action and the explicit normative character of the interventions constitute two characteristics which pose challenges to the selection of appropriate quality criteria and require special attention. In a second step, we outline the way in which an analysis of the role of ethics consultants in the context of a clinical ethical case consultation services can account for the existing challenges by linking empirically measurable endpoints with normative theory. Finally, we discuss practical implications of our model for evaluation research. (shrink)