Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. Participants and research context: One case (...) was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management. (shrink)

Narrative ethics taps into an inherent human need to tell our own stories centred on our own moral values and to have those stories heard and acknowledged. However, not everyone’s words are afforded equal power. The use of narrative ethics in bioethical decision-making is problematized by a disparity in whose stories are told, whose stories are heard, and whose stories are believed. Here, I conduct an analysis of narrative ethics through a critical theory lens to show how entrenched patterns of (...) narrative neglect in medicine are harming not only our capacity to make use of narrative ethics but also our capacity to deliver effective healthcare. To illustrate this point, I use three examples where the patient’s gender affects how their stories unfold: autism, weight, and pain management. From these, I argue that the use of narrative ethics without the application of a critical theory lens risks the exacerbation of what Miranda Fricker refers to as “testimonial injustice,” the prima facie harm experienced by individuals whose credibility is undermined by others’ prejudices. Finally, I suggest that narrative ethics can be a powerful tool for mitigating oppressive practices in medicine if we couple it with critical analysis that enables us to understand the power dynamics at play in storytelling. (shrink)

The aim of this paper is to analyze an Intensive Care Unit case that required ethics consultation at a University Hospital in Northern Italy. After the case was resolved, a retrospective ethical analysis was performed by four clinical ethicists who work in different healthcare contexts. Each ethicist used a different method to analyze the case; the four general approaches provide insight into how these ethicists conduct ethics consultations at their respective hospitals. Concluding remarks examine the similarities and differences among the (...) various approaches and offer a reflection concerning the possibility of a shared resolution to the case. The authors’ efforts to come to a tentative consensus may serve as an example for professionals working in medical contexts that reflect an increasing pluralism of values. This article aims to respond to some of these concerns by illustrating how different methods in clinical ethics would be used when considering a real case. The goal is not to establish the best model on a theoretical level, but to learn from actual practice in order to see if there are common elements in the different methods, and to validate their pertinence to clinical ethics consultation. (shrink)

To address the moral questions in patient care and medical practice, Danish hospitals are starting to solicit clinical ethics committees. As in other places around the world, CECs in Denmark is an interdisciplinary group that includes physicians, nurses, social workers, psychologists, lawyers, chaplains, and sometimes lay persons. Due to their distinct professional background, members are largely untrained in concepts, skills and the language of moral philosophy and ethical reasoning. The absence of appropriate competencies makes it challenging for members to identify, (...) analyze and resolve lingering moral quandaries. Thus, the creation of CECs in Denmark has raised the question of qualifications for those who serve on a committee. When the Danish Society of Clinical Ethics was formed in 2012, it was therefore at the forefront of its agenda to establish a training program that would offer valuable contributions to the ethical aspect of medical decision making and to serve as an important resource for health care providers, patients and their families. This article describes the history, development and preliminary results of the current training program as well as reflects on future ideas for ethics education for Danish CECs and health care providers at large. (shrink)

In this paper, for the benefit of reflection processes in clinical and in local, regional, and national priority-setting, we aim to develop an ethical theoretical framework that includes both ethical principles and medium-range narratives. We present our suggestion in the particular case of having to choose between treatment interventions for attention deficit hyperactivity disorder (ADHD) and treatment interventions for other conditions or diseases, under circumstances of scarcity. In order to arrive at our model, we compare two distinct ethical approaches: a (...) generalist (principles) approach and a particularist (narratives) approach. Our focus is on Sweden, because in Sweden prioritization in healthcare is uniquely governmentally regulated by the “ethics platform.” We will present a (fictional) scenario to analyse the strengths and weaknesses of the generalist principled perspective of the ethics platform and the particularist perspective of narrative ethics. We will suggest an alternative (moderately particularist) approach to prioritization, which we dub a “principles plus medium-range narratives” approach. Notwithstanding the undeniably central role of principles in distributive justice, we claim that medium-range narratives concerning individuals or groups who stand to benefit or lose from ADHD prioritization practices should also be read or listened to and taken into account at all levels of priority-setting. These narratives are expected to ethically optimize clinical priority-setting, as well as that undertaken at local, regional, and national levels. (shrink)

Background:Even in countries with an opt-out or presumed consent system, relatives have a considerable influence on the post-mortem organ harvesting decision. However, their reflection capacity may be compromised by grief, and they are, therefore, often prone to choose refusal as default option. Quite often, it results in late remorse and dissatisfaction. So, a high-quality reflection support seems critical to enable them to gain a stable position and a long-term peace of mind, and also avoid undue loss of potential grafts. In (...) practice, recent studies have shown that the ethical aspects of reflection are rarely and often poorly discussed with relatives and that no or incomplete guidance is offered. No review of the literature is available to date, although it could be of value to improve the quality of the daily practice.Objectives:The objective was to review and synthesize the main concepts and approaches, theories and practices of ethical reflection support of the relatives or surrogates of potential post-mortem organ donors.Research design:A narrative review was performed in the medical, psychological and ethical fields using PubMed, PsycArticles and Web of Science databases (1980–2020).Results:Out of 150 papers, 25 were finally retained. Four themes were drawn: the moral status of the potential post-mortem organ donor, the principlistic approach with its limits and critics, the narrative approach and the transcendental approach.Discussion:This review suggests an extension of psychological support towards ethical reflection support. The process of helping relatives in their ethical exploration of post-mortem organ donation is psychologically and morally characterized. The need for specialized professionals educated and experienced both in clinical psychology and in health ethics to carry out this task is discussed.Practical impact:This review could contribute to optimize the quality of the ethical reflection support by initiating an evolution from an empirical, partial and individual-dependent support to a more systematized, professionalized and exhaustive support. (shrink)