As policy makers place great hope in health information technology as a means to lower costs and achieve improvements in health care quality, safety, and efficiency, organizations at the forefront of building health information exchange networks attempt to weave the concept and function of informed consent into an evolving information-driven health care system. The vast amount of information that will become available to both health professionals and patients in the new HIT-driven environment can reasonably be expected to affect the relationship (...) between them in many ways, particularly in the area of informed consent. During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent’s proper role in a heretofore unknown health care environment — one in which electronic information sharing holds primary importance. The central and largely unexamined question of whether and how the legal and ethical underpinnings of informed consent will fit into the context of HITenabled treatment is critical to both public policy and clinical practice. (shrink)

In their practice, nurses make daily decisions that are ethically informed. An ethical decision is the result of a complex reasoning process based on knowledge and experience and driven by ethical values. Especially in acute elderly care and more specifically decisions concerning the use of physical restraint require a thoughtful deliberation of the different values at stake. Qualitative evidence concerning nurses’ decision-making in cases of physical restraint provided important insights in the complexity of decision-making as a trajectory. However a nuanced (...) and refined understanding of the reasoning process in terms of ethical values is still lacking. A qualitative interview design, inspired by the Grounded Theory approach, was carried out to explore nurses’ reasoning process in terms of ethical values. We interviewed 21 acute geriatric nurses from 12 hospitals in different regions in Flanders, Belgium in the period October 2009–April 2011. The Qualitative Analysis Guide of Leuven was used to analyse interview data. Nurses’ decision-making is characterized as an ethical deliberation process where different values are identified and where the process of balancing these values forms the essence of ethical deliberation. Ethical decision-making in cases of physical restraint implies that nurses have to choose which values receive priority in the process, which entails that not all values can be respected to the same degree. As a result, decision making can be experienced as difficult, even as a dilemma. Driven by the overwhelming goal of protecting physical integrity, nurses took into account the values of dignity and justice more implicitly and less dominantly. (shrink)

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature (...) and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches––namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology––have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful “relational turn”, which has been partially initiated in contemporary bioethics but not yet achieved. (shrink)

BackgroundRespect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately (...) operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.MethodsUsing PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.ResultsFifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.ConclusionsThree main conclusions were reached. First, literature on relational autonomy tends to be more a ‘reaction against’ an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations. (shrink)

The author examines the motives for the behaviour and actions of Dr. Skreta, the main character of Kundera’s novel The Farewell Waltz. The starting point of the novel was the social and political situation in totalitarian Czechoslovakia at the turn of the 1960s and 1970s. He compares it to the situation in the developed western world and comes to a realization that there were many similarities in medicine; however, there were significant differences with regard to external factors. The health care (...) system in western democratic societies were placed in contrast with Czechoslovakia, where a doctor’s activities and the system of health care were subordinated to the political, ideological, and social intentions of totalitarian power. In this context, the author has come to the conclusion that Dr. Skreta’s motives for acting arose from his moral responsibility for the country’s future. Dr. Skreta waged a latent personal “moral war” against the totalitarian regime. This was also reflected in his opposition to the preferred morality of socialist health care professionals. Part of this was his eugenics project. According to the author, in the context of ethics of social consequences, Dr. Skreta was a responsible moral agent seeking a better future not only for the country and its people, but his personal selfish interests. (shrink)

Health care providers are expected both to relieve pain and to provide anticipatory guidance regarding how much a procedure is going to hurt. Fulfilling those expectations is complicated by the cognitive modulation of pain perception. Warning people to expect pain or setting expectations for pain relief not only influences their subjective experience, but it also alters how nociceptive stimuli are processed throughout the sensory and discriminative pathways in the brain. In light of this, I reconsider the characterization of placebo analgesia (...) as pharmacologically inert and the use of it as deceptive. I show that placebo analgesia exploits the same physical mechanisms as proven analgesics and argue that it should be utilized to relieve pain. Additionally, I describe factors to help identify situations in which clinicians have the obligation to disclose the potential for pain coupled with ways of mitigating the risk of high-intensity pain by setting positive expectations. (shrink)

This article examines the difficulties encountered in teaching professionalism to medical students in the current social and political climate where economic considerations take top priority in health care decision making. The conflict between the commitment to advocate at all times the interests of one’s patients over one’s own interests is discussed. With personal, institutional, tech industry, pharmaceutical industry, and third-party payer financial imperatives that stand between patients and the delivery of health care, this article investigates how medical ethics instructors are (...) to teach professionalism in a responsible way that does not avoid dealing with the principle of justice. (shrink)

Psychopathy is a disorder involving personality and behavioral features associated with a high rate of violent aggression and recidivism. This paper explores potential psychopharmacological therapies to modulate dysfunctional neural pathways in psychopaths and reduce the incidence of their harmful behavior, as well as the ethical and legal implications of offering these therapies as an alternative to incarceration. It also considers whether forced psychopharmacological intervention in adults and children with psychopathic traits manifesting in violent behavior can be justified. More generally, the (...) paper addresses the question of how to weigh the psychopath’s presumptive right to non-interference in his brain and mind against the public interest in avoiding harm. (shrink)

Background: Studies have demonstrated the extensive use of coercion in Norwegian nursing homes, which represents ethical, professional as well as legal challenges to the staff. We have, however, limited knowledge of the experiences and views of nursing home patients and their relatives. Objectives: The aim of this study is to explore the perspectives of nursing home patients and next of kin on the use of coercion; are there situations where the use of coercion can be defended, and if so, under (...) which circumstances? Methods: The data are based on individual interviews with 35 patients living in six nursing homes and seven focus group interviews with 60 relatives. Ethical considerations: Participation was based on written informed consent, and the study was approved by the Regional Committees for Medical and Health Research Ethics. Results: More than half of the patients and the majority of the relatives accepted the use of coercion, trusting the staff to act in the patient’s best interest. However, the acceptance of coercion is strongly related to the patients’ lack of understanding, to prevent health risks and to preserve the patient’s dignity. Conclusion: The majority of nursing home patients and relatives accepted the use of coercion in specific situations, while at the same time they emphasised the need to try alternative strategies first. There is still a need for good qualitative research on the use of coercion in nursing homes, especially with a closer focus on the perspectives and experiences of nursing home patients. (shrink)

Active shooter incidents have unfortunately become a common occurrence the world over. There is no country, city, or venue that is safe from these tragedies, and healthcare institutions are no exception. Healthcare facilities have been the targets of active shooters over the last several decades, with increasing incidents occurring over the last decade. People who work in healthcare have a professional and moral obligation to help patients. As concerns about the possibility of such incidents increase, how should healthcare institutions and (...) healthcare professionals understand their responsibilities in preparation for and during ASI? (shrink)

Many parents are hesitant about, or face motivational barriers to, vaccinating their children. In this paper, we propose a type of vaccination policy that could be implemented either in addition to coercive vaccination or as an alternative to it in order to increase paediatric vaccination uptake in a non-coercive way. We propose the use of vaccination nudges that exploit the very same decision biases that often undermine vaccination uptake. In particular, we propose a policy under which children would be vaccinated (...) at school or day-care by default, without requiring parental authorization, but with parents retaining the right to opt their children out of vaccination. We show that such a policy is likely to be effective, at least in cases in which non-vaccination is due to practical obstacles, rather than to strong beliefs about vaccines, ethically acceptable and less controversial than some alternatives because it is not coercive and affects individual autonomy only in a morally unproblematic way, and likely to receive support from the UK public, on the basis of original empirical research we have conducted on the lay public. (shrink)

Conflict of interests in medicine are typically taken to be financial in nature: it is often assumed that a COI occurs when a healthcare practitioner’s financial interest conflicts with patients’ interests, public health interests, or professional obligations more generally. Even when non-financial COIs are acknowledged, ethical concerns are almost exclusively reserved for financial COIs. However, the notion of “interests” cannot be reduced to its financial component. Individuals in general, and medical professionals in particular, have different types of interests, many of (...) which are non-financial in nature but can still conflict with professional obligations. The debate about healthcare delivery has largely overlooked this broader notion of interests. Here, we will focus on health practitioners’ moral or religious values as particular types of personal interests involved in healthcare delivery that can generate COIs and on conscientious objection in healthcare as the expression of a particular type of COI. We argue that, in the healthcare context, the COIs generated by interests of conscience can be as ethically problematic, and therefore should be treated in the same way, as financial COIs. (shrink)

Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is still very common in (...) clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment. (shrink)

When making moral judgments, people are typically guided by a plurality of moral rules. These rules owe their existence to human emotions but are not simply equivalent to those emotions. And people’s moral judgments ought to be guided by a plurality of emotion-based rules. The view just stated combines three positions on moral judgment: [1] moral sentimentalism, which holds that sentiments play an essential role in moral judgment,1 [2] descriptive moral pluralism, which holds that commonsense moral judgment is guided by (...) a plurality of moral rules2, and [3] prescriptive moral pluralism, which holds that moral judgment ought to be guided by a plurality of moral rules. In what follows, we will argue for all three positions. We will not present a comprehensive case for these positions nor address many of the arguments philosophers have developed against them. What we will try to show is that recent psychological work supports sentimentalist pluralism in both its descriptive and prescriptive forms. (shrink)

The idea that deep brain stimulation (DBS) induces changes to personality, identity, agency, authenticity, autonomy and self (PIAAAS) is so deeply entrenched within neuroethics discourses that it has become an unchallenged narrative. In this article, we critically assess evidence about putative effects of DBS on PIAAAS. We conducted a literature review of more than 1535 articles to investigate the prevalence of scientific evidence regarding these potential DBS-induced changes. While we observed an increase in the number of publications in theoretical neuroethics (...) that mention putative DBS-induced changes to patients’ postoperative PIAAAS, we found a critical lack of primary empirical studies corroborating these claims. Our findings strongly suggest that the theoretical neuroethics debate on putative effects of DBS relies on very limited empirical evidence and is, instead, reliant on unsubstantiated speculative assumptions probablyin lieuof robust evidence. As such, this may reflect the likelihood of a speculative neuroethics bubble that may need to be deflated. Nevertheless, despite the low number of first-hand primary studies and large number of marginal and single case reports, potential postoperative DBS changes experienced by patients remain a critical ethical concern. We recommend further empirical research in order to enhance theoretical neuroethics work in the area. In particular, we call for the development of better instruments capable of capturing potential postoperative variations of PIAAAS. (shrink)

Owing to an oversight, we noted that the acknowledgement section was missing from the original published version of this paper.

The article Deflating the "DBS causes personality changes" bubble, written by Frederic Gilbert, J. N. M. Viaña and C. Ineichen, was originally published electronically on the publisher’s internet portal on 19 June 2018 without open access.

BackgroundFor children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a (...) life-limiting condition who is unable to participate in decision-making for his/herself.MethodsThis qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician.ResultsTwo key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: there is a spectrum of paediatricians’ roles and responsibilities in decision-making, and the specific influences on paediatricians’ choice of approach for end-of-life decisions. In relation to, analysis showed four distinct approaches: non-directed, joint, interpretative, and directed. In relation to, the common factors were: harm to the child, possible psychological harm to parents, parental preferences in decision-making, and resource allocation.ConclusionsDespite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians’ considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making.Trial registration: Not applicable. (shrink)

Cara sui (care of the self) is a guiding thread in Foucault's later writings on ethics. Following Foucault in that inquiry, we are urged beyond our fairly superficial conceptions of consequences, harms, benefits, and the rights of persons, and led to examine ourselves and try to articulate the sense of life that animates ethical reasoning. The result is a nuanced understanding with links to virtue ethics and post-modern approaches to ethics and subjectivity. The approach I have articulated draws on the (...) phenomenology of Levinas and Heidegger, the Virtue ethics of Baier, and the post-structuralist writing of Michel Foucault. The subject is seen as negotiable, embodied, provisional and able to be transformed in a way that denies essentialism about human beings, their moral status, and the idea of the good. The human being emerges as responsible because, properly, responsive to the context of discourse in which morality becomes articulated. When we import this style of thinking into bioethics we find that it reaches beyond issues of policy or right conduct and allows us to use the biomedical sciences and the clinical world to revise and interrogate our understanding of ourselves and the theoretical foundations of health care ethics. (shrink)

Im Zuge einer Änderung des Arzneimittelgesetzes im November 2016 hat der Deutsche Bundestag beschlossen, dass gruppennützige Arzneimittelforschung mit nicht-einwilligungsfähigen Erwachsenen unter bestimmten Bedingungen erlaubt sein soll. Das entsprechende Gesetz wird voraussichtlich im Jahr 2020 in Kraft treten. Das ethische Problem dieser Forschung besteht darin, dass Personen, die nicht in der Lage sind, ihre Einwilligung in die Forschung zu erteilen, nicht vom medizinischen Fortschritt ausgeschlossen werden sollen. Der Gesetzgeber hat versucht, diesen Konflikt zu lösen, indem er die Zulässigkeit der gruppennützigen Forschung (...) mit nicht-einwilligungsfähigen Erwachsenen an die Voraussetzung geknüpft hat, dass Studienteilnehmer ihre Einwilligung zuvor in einer Probandenverfügung erteilen. Der Beitrag hat das Ziel, die neue Regelung zur gruppennützigen Forschung mit nicht-einwilligungsfähigen Erwachsenen aus ethischer Sicht zu bewerten. Die Frage, ob die Gesetzesänderung weitere Forschung ermöglichen wird, hängt wesentlich davon ab, ob man mit Blick auf Studien, die sowohl eigennützige als auch gruppennützige Maßnahmen umfassen, eine Gesamtbetrachtung oder eine Einzelbetrachtung dieser Studien vorzieht. In unserem Beitrag argumentieren wir für eine Einzelbetrachtung. Es wird weiterhin die Auffassung vertreten, dass die im Gesetzgebungsverfahren vorgeschlagene Probandenverfügung die Selbstbestimmung der Patienten fördern kann, wenn sie mit Blick auf die mit der Teilnahme verbundenen Eingriffe ein Mindestmaß an Bestimmtheit erreicht.Zusammenfassend wird die Auffassung vertreten, dass gruppennützige Forschung mit nicht-einwilligungsfähigen Erwachsenen trotz der genannten Bedenken unter bestimmten Bedingungen ethisch zulässig sein kann. In der Gesamtabwägung erscheint dabei die eindeutige Definition und strenge Beachtung der Bedingungen der EU-Verordnung 536/2014 mit Blick auf einen ethisch gerechtfertigten Einbezug von nicht-einwilligungsfähigen Erwachsenen in gruppennützige Forschung als besonders bedeutsam. (shrink)

In India, the private healthcare sector is rapidly growing. The focus on profit and curative treatment in this sector carries the danger of overtreatment and lack of attention to types of care where the margin of profit is limited, such as palliative care. Since further expansion of the private healthcare sector is unavoidable and even necessary due to limited government spending on healthcare in India, ways to promote palliative care awareness in such an environment need to be found. An important (...) step towards this goal is the development of healthcare ethics education with a focus on those ethical theories which are most appropriate from a socio-cultural perspective. Principlism, the dominant model in Western healthcare ethics which applies the principles autonomy, beneficence, nonmaleficence and justice to ethical cases, may not be most suited to the Indian context. Principlism very strongly focuses on individualistic autonomy. Although autonomy can obviously not be neglected in Indian healthcare, ethical theories which pay more attention to relational aspects may be more appropriate. In this context, Care Ethics appears as a valuable ethical theory. Moreover, the focus on caring relationships in Care Ethics clearly points to the need of palliative care. Development of socio-culturally appropriate healthcare ethics education can inculcate ethical sensitivity which will benefit palliative care in India. (shrink)

While it is acknowledged that there is a need for more qualitative research on suicide, it is also clear that the ethics of undertaking such research need to be addressed. This article uses the case study of the authors’ experience of gaining ethics approval for a research project that asks people what it is like to feel suicidal to (a) analyse the limits of confidentiality and anonymity and (b) consider the ways in which the process of ethics review can shape (...) and constrain suicide research. This leads to a discussion of the ways in which ethics committees assess and monitor qualitative research more generally and some preliminary suggestions for how this might be improved. (shrink)

Discussions of patient-centred care and patient autonomy in bioethics have tended to focus on the decision-making context and the process of obtaining informed consent, leaving open the question of how patients ought to be counselled in the daily maintenance of their health and management of chronic disease. Patient activation is an increasingly prominent counselling approach and measurement tool that aims to improve patients’ confidence and skills in managing their own health conditions. The strategy, which has received little conceptual or ethical (...) analysis, raises important questions about how clinicians ought to foster confidence and a sense of control in their patients without exposing them to blame, stigma and other harms. In this paper, we describe patient activation, discuss its relationship to personal responsibility, autonomy and health disparities, and make recommendations regarding its use and measurement. (shrink)

Prior to their announcement of the birth of gene-edited twins in China, Dr. He Jiankui and colleagues published a set of draft ethical principles for discussing the legal, social, and ethical aspects of heritable genome interventions. Within this document, He and colleagues made it clear that their goal with these principles was to “clarify for the public the clinical future of early-in-life genetic surgeries” or heritable genome editing. In light of He’s widely criticized gene editing experiments it is of interest (...) to place these draft principles in the larger ethical debate surrounding heritable genome editing. Here we examine the principles proposed by He and colleagues through the lens of Beauchamp and Childress’ Principles of Biomedical Ethics. We also analyze the stated goal that the “clinical future” of heritable genome editing was clarified by He and colleagues’ proposed principles. Finally, we highlight what might be done to help prevent individual actors from pushing forward ahead of broad societal consensus on heritable genome editing. (shrink)

Eine patientengerechte Versorgung ist ein hohes Ziel. Unangemessene Behandlung wie Unter- oder Überversorgung zu erkennen und zu vermeiden, stellt Ärztinnen/Ärzte und Pflegende am Krankenbett vor schwierige Entscheidungen. Hier ist die Entwicklung von praxistauglichen Orientierungshilfen angezeigt, die wissenschaftlichen Kriterien genügen und nicht allein auf Konsens beruhen. Die vorliegende Arbeit versucht, zentrale Normen zur Vermeidung von Über- und Unterversorgung zu formulieren und theoretisch zu fundieren. Dafür wird auf Basis einer Interessen-basierten Ethik eine Graduierung der Autonomie vorgenommen, indem zwischen schwacher und starker Autonomie (...) unterschieden wird. (shrink)

Eine patientengerechte Versorgung ist ein hohes Ziel. Unangemessene Behandlung wie Unter- oder Überversorgung zu erkennen und zu vermeiden, stellt Ärztinnen/Ärzte und Pflegende am Krankenbett vor schwierige Entscheidungen. Hier ist die Entwicklung von praxistauglichen Orientierungshilfen angezeigt, die wissenschaftlichen Kriterien genügen und nicht allein auf Konsens beruhen. Die vorliegende Arbeit versucht, zentrale Normen zur Vermeidung von Über- und Unterversorgung zu formulieren und theoretisch zu fundieren. Dafür wird auf Basis einer Interessen-basierten Ethik eine Graduierung der Autonomie vorgenommen, indem zwischen schwacher und starker Autonomie (...) unterschieden wird. (shrink)

Moral sensitivity and moral reasoning are essential competencies biomedical researchers have to develop to make ethical decisions in their daily practices. Previous research has shown that these competencies can be developed through ethics education. However, it is unclear which underlying mechanisms best support the development of these competencies. In this article we argue that the development of moral sensitivity and moral reasoning can be fostered through teaching strategies that tap into students’ moral imagination. We describe how moral imagination can stimulate (...) the development of these competencies through three different merits of moral imagination. Moral imagination can help students to 1) transfer and apply abstract moral concepts to concrete situations and contexts, 2) explore the perspective of others, 3) explore and foresee the moral consequences of different decisions and actions. We explain these three merits of moral imagination in the context of biomedical research and present a theoretical model for how these merits can be used to stimulate the development of moral sensitivity and moral reasoning. Furthermore, we describe multiple teaching strategies for biomedical curricula that tap into the three merits of moral imagination. These teaching strategies can inspire teachers to design ethics education that activates students’ moral imagination for the development of moral sensitivity and moral reasoning. (shrink)

Zusammenfassung In deutschen Privathaushalten sind derzeit schätzungsweise 100.000 bis 500.000 in Pendelmigration lebende Live-in-Hilfen tätig, viele von ihnen in der Versorgung von Menschen mit Demenz. Dabei deutet die primär sozialwissenschaftlich ausgerichtete Forschung zu Live-in-Versorgung auf vielfältige strukturell bedingte Missstände hin. Allerdings fehlt bislang eine eingehendere ethische Analyse und Erörterung mit Blick auf das Mikrosetting der betreffenden Versorgungsarrangements selbst. Der vorliegende Artikel geht der Frage nach, welche moralischen Probleme und Konflikte im Mikrosetting häuslicher Live-in-Versorgung von Menschen mit Demenz auftreten und wie (...) diese ethisch einzuschätzen sind. Zu diesem Zweck werden im Zuge einer qualitativen Inhaltsanalyse von 182 Beiträgen aus drei deutschsprachigen Onlineforen die Ansprüche betroffener Angehöriger von Menschen mit Demenz gegenüber Live-in-Hilfen herausgearbeitet und ethisch eingeordnet. Wie sich zeigt, werden diese als Dienstleistungserbringer:in, Pflegekraft, moralische:r Akteur:in und Familienmitglied adressiert. In den vielfältigen und häufig enttäuschten Erwartungen der Angehörigen treten teils problematische und widersprüchliche Ansprüche gegenüber Live-in-Hilfen zu Tage. Eine ethische Analyse ihrer Legitimität und Kohärenz kann zur Verbesserung der individuellen Planung und Gestaltung, der institutionellen Organisation sowie der gesellschaftlichen Verständigung und rechtlichen Regulierung von Live-in-Versorgung beitragen. (shrink)

Problem An estimated 100,000–500,000 migrant care workers provide live-in care in German households, many of them caring for older people with dementia. Social research has identified a wide range of structural social problems associated with live-in care. However, a systematic ethical analysis and discussion is still missing. Arguments This article explores the moral conflicts that arise in the microsetting of live-in arrangements for people with dementia. For this purpose, we conduct an ethical analysis of the expectations of relatives towards live-in (...) care for people with dementia based on a qualitative content analysis of 182 contributions from three German-language online forums. These expectations address live-ins as service providers, professional nurses, moral agents, and family members. Conclusion The diverse and often disappointed expectations of relatives are an expression of problematic and partly contradictory claims regarding live-in care for people with dementia. An ethical analysis of their legitimacy and coherence can help to improve the individual arrangement, the institutional organisation, and the moral framing and legal regulation of live-in care. (shrink)

Over the past decades, great strides have been made to professionalize and increase access to transgender medicine. As the evidence base grows and conceptualizations regarding gender dysphoria/gender incongruence evolve, so too do ideas regarding what constitutes good treatment and decision-making in transgender healthcare. Against this background, differing care models arose, including the ‘Standards of Care’ and the so-called ‘Informed Consent Model’. In these care models, ethical notions and principles such as ‘decision-making’ and ‘autonomy’ are often referred to, but left unsubstantiated. (...) This not only transpires into the consultation room where stakeholders are confronted with many different ethical challenges in decision-making, but also hampers a more explicit discussion of what good decision-making in transgender medicine should be comprised of. The aim of this paper is to make explicit the conceptual and normative assumptions regarding decision-making and client autonomy underpinning the ‘Standards of Care’ and ‘Informed Consent Model’ currently used in transgender care. Furthermore, we illustrate how this elucidation aids in better understanding stakeholders’ ethical challenges related to decision-making. Our ethical analysis lays bare how distinct normative ambiguities in both care models influence decision-making in practice and how foregrounding one normative model for decision-making is no moral panacea. We suggest that the first steps towards good decision-making in gender-affirming medical care are the acknowledgement of its inherent normative and moral dimensions and a shared, dialogical approach towards the decision-making process. (shrink)

This article is a review of the literature on the subject of how nurses who provide palliative care are affected by ethical issues. Few publications focus directly on the moral experience of palliative care nurses, so the review was expanded to include the moral problems experienced by nurses in the care of the terminally ill patients. The concepts are first defined, and then the moral attitudes of nurses, the threats to their moral integrity, the moral problems that are perceived by (...) nurses, and the emotional consequences of these moral problems are considered in turn. The results show that the moral behaviour of nurses, which is theoretically grounded in commitment to care and to the patient, appears to be shaped by specific processes that lead to engagement or to mental and behavioural disengagement in morally difficult situations. Nurses often appear to fail to recognize the moral dimensions of the problems they experience and also to lack the skills they need to resolve moral problems adequately. Although the findings show that several elements that are beyond the control of nurses, owing to their lack of autonomy and authority, influence their moral experience, intrinsic factors such as feelings of insecurity and powerlessness have a profound effect on nurses’ perceptions and attitudes in the face of moral problems. The moral problems perceived by these nurses are related to end-of-life issues, communication with patients, the suffering of patients, and the appropriateness of the medical treatment. (shrink)

Although the principle of respect for personal autonomy has been the subject of debate for almost 40 years, the conversation has often suffered from lack of clarity regarding the philosophical traditions underlying this principle. In this article, I trace a genealogy of autonomy, first contrasting Kant’s autonomy as moral obligation and Mill’s teleological political liberty. I then show development from Mill’s concept to Beauchamp and Childress’ principle and to Julian Savulescu’s non-teleological autonomy sketch. I argue that, although the reach for (...) a new principle to guide choices in physician–patient relationships can rightfully be seen as important, the notion that is now called autonomy within bioethics has corollaries that undermine critical aspects of medical care. As such, there is need for a richer account of the interplay between the free choice of patients and the informed recommendations of doctors. (shrink)

The nocebo effect, a phenomenon whereby learning about the possible side effects of a medical treatment increases the likelihood that one will suffer these side effects, continues to challenge physicians and ethicists. If a physician fully informs her patient as to the potential side effects of a medicine that may produce nocebogenic effects, which is usually conceived of as being a requirement associated with the duty to respect autonomy, she risks increasing the likelihood that her patient will experience these side (...) effects and therefore suffer (unnecessary) harm, a violation of the duty of nonmaleficence. If, on the other hand, she intentionally withholds side effect information in an effort to protect her patient from suffering unnecessary harm from side effects, which is consistent with the duty of nonmaleficence, she violates the duty to respect patient autonomy. In this paper, the author discusses several previous attempts to deal with the nocebo effect and explains their weaknesses. He then proposes a means of managing the nocebo effect and argues that it does not share the weaknesses found in previous approaches. He concludes with a discussion of a simple, yet practical tool that might help clinicians manage the tension resulting from the nocebo effect. (shrink)

Rapid Ethical Assessment is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. Qualitative study employing rapid ethnographic approach was conducted from May–July, 2017, at the Tikur (...) Anbessa Specialized Referral Hospital. In-depth and key informants’ interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient’s time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term “cancer” was associated with fear and anxiety. Alternatively, uses of phrases like “breast or cervical illness/disease” were suggested during patient interviews. Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients. (shrink)

BackgroundVulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this (...) gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept.MethodsUsing PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, Embase®, Web of Science™, and Philosopher’s Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology.ResultsThirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults’ vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults’ vulnerability: understanding older adults’ vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures.ConclusionsThe way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human. (shrink)

In the seventh and most recent edition of their classic book, Principles of Biomedical Ethics, Tom Beauchamp and James Childress define a virtue as a character trait that is “socially valuable and reliably present” and a moral virtue as such a trait that is also both “dispositional” and “morally valuable”. The virtues that they single out as “focal” within biomedical ethics are compassion, discernment, trustworthiness, integrity, and conscientiousness. Not all is well in their treatment of virtue. Beauchamp and Childress seem (...) to worry that an ethical theory in which virtues are fundamental will neglect duties, rights, and societal needs. Further, they insist that there is no reason to think that, within ethical theory, one family of ethical concepts is the most important, nor that one theoretical approach is correct, or even superior to others. I will try to show, that there are strong reasons to see language, concepts, and matters of virtue as fundamental within normative ethical theory, both generally and in such specialized subareas as medical ethics. These reasons reveal themselves when we analyze concepts at the core of the alternative approaches to theorizing ethics that Beauchamp and Childress identify. (shrink)

Guidelines orient best practices in medicine, yet, in health care, many real world constraints limit their optimal realization. Since guideline implementation problems are not systematically anticipated, they will be discovered only post facto, in a learning curve period, while the already implemented guideline is tweaked, debugged and adapted. This learning process comes with costs to human health and quality of life. Despite such predictable hazard, the study and modeling of medical guideline implementation is still seldom pursued. In this article we (...) argue that to systematically identify, predict and prevent medical guideline implementation errors is both an epistemic responsibility and an ethical imperative in health care, in order to properly provide beneficence, minimize or avoid harm, show respect for persons, and administer justice. Furthermore, we suggest that implementation knowledge is best achieved technically by providing simulation modeling studies to anticipate the realization of medical guidelines, in multiple contexts, with system and scenario analysis, in its alignment with the emerging field of implementation science and in recognition of learning health systems. It follows from both claims that it is an ethical imperative and an epistemic responsibility to simulate medical guidelines in context to minimize harm in health care, before guideline implementation. (shrink)

Objective: To present a narrative review of the history of bioethics in Latin America and of scientific output in this interdisciplinary field. Methods: This was a mixed-methods study. Results: A total of 1458 records were retrieved, of which 1167 met the inclusion criteria. According to the Web of Science classification, the predominant topics of study were medical ethics, social sciences and medicine, and environmental and public health topics. Four themes of bioethics output in the Latin American literature have emerged: issues (...) involving the beginning and end of life, ethics in human research, patient–provider relationships, and ethics training for health professionals. Conclusion: Although bioethics is a growing interdisciplinary field in Latin America, its academic impact is still very low, and programmes are highly concentrated in large urban centres in a few countries. Challenges includes the regional and international impact of local scientific output. (shrink)

Clinicians have good moral and professional reasons to contribute to pragmatic clinical trials (PCTs). We argue that clinicians have a defeasible duty to participate in this research that takes place in usual care settings and does not involve substantive deviation from their ordinary care practices. However, a variety of countervailing reasons may excuse clinicians from this duty in particular cases. Yet because there is a moral default in favor of participating, clinicians who wish to opt out of this research must (...) justify their refusal. Reasons to refuse include that the trial is badly designed in some way, that the trial activities will violate the clinician’s conscience, or that the trial will impose excessive burdens on the clinician. (shrink)

ABSTRACT Through an interdisciplinary literature review, this propositional paper explores the emergence and unfolding of professionals’ moral identity conflicts involving important but contrasting values. Building on the exemplary case of physicians’ professional-religious dilemmas in End-of-Life circumstances, we develop a multilevel model of professional-personal identity conflict dynamics in ethically-charged situations in which we integrate individual-level mechanisms with organizational-level boundary conditions, namely peer social support and ethical climate, in relation to psychological well-being. Our conceptual model contributes to the ethics, identity and human (...) behavior literature by advancing suggestions of how professionals may prevent or/and resolve moral conflicts concerning also other identities and contexts. (shrink)

A child is a developing person with evolving capacities that include autonomy, mental capacity and capacity to assume responsibility. Hence, children are entitled to participatory rights in South Africa as observed in the Children’s Act 38 of 2005. According to section 129 of the Act a child may consent to his or her own medical treatment provided that he or she is over the age of 12 years and is of sufficient maturity and decisional capacity to understand the various implications (...) of the treatment including the risks and benefits thereof. However, the Act does not provide a definition for what qualifies as ‘sufficient maturity’ nor does it stipulate how health professionals ought to assess the decisional capacity of a child. In addition, South Africa is a culturally diverse country. The Western liberal notion of autonomy may not necessarily find equal prominence in the mores of people with a different worldview. Hence we demonstrate a few salient comparisons between legal liberal moral theory and African communitarianism as pertinent to the autonomy of the child. Children are rights-holders by virtue of their humanity. Their dignity as individual human persons affords them the entitlement to human rights as contemplated under the Constitution of the Republic of South Africa. However, contrary to the traditional Western notion of individual autonomous persons African societies hold a communalistic notion of person hence there is less regard for individual autonomy and rights with more emphasis on the communal good and maintaining the continuity of relationships and interdependencies shared within a community. A child considered in this view is not regarded as a full person. This implies that decisions concerning the child, including consent to medical treatment are discussed and determined by the community to which the child belongs. Lastly, in this article, we draw on the notion of capacity for responsibility to produce a pragmatic definition of sufficient maturity. It seems reasonable to suggest a move away from a general legal age of consent for medical treatment toward more individualised, context-specific approaches in determining the maturity of a child patient to consent to medical treatment. Perhaps, decision-making with respect to consent to the medical treatment of a child belonging to a traditional African community where the notion of a person is embedded in communitarianism ought to involve the child’s parents/guardians/caregivers where possible provided that the best interests of the child are awarded priority. (shrink)

A key question has been underexplored in the literature on conscientious objection: if a physician is required to perform ‘medical activities,’ what is a medical activity? This paper explores the question by employing a teleological evaluation of medicine and examining the analogy of military conscripts, commonly cited in the conscientious objection debate. It argues that physicians (and other healthcare professionals) can only be expected to perform and support medical acts – acts directed towards their patients’ health. That is, physicians cannot (...) be forced to provide or support services that are not medical in nature, even if such activities support other socially desirable pursuits. This does not necessarily mean that medical professionals cannot or should not provide non-medical services, but only that they are under no obligation to provide them. (shrink)

The implementation of pre-exposure prophylaxis (PrEP) as a new tool for prevention against HIV raised particular ethical concerns regarding the individuals’ and the collective's best interests in France. It was questioned whether the beneficence of taking or prescribing PrEP regarding its high efficacy to protect people from HIV is always more important than the maleficence represented by the risks involved, such as healthy people taking a pill with side effects, the growth of sexually transmitted infections or the potential generalization of (...) risk-taking sexual behaviour. The main objective of this study was to explore patients’ and health professionals’ ethical questioning on PrEP. Sixty-nine qualitative interviews were conducted with 45 users and 24 healthcare professionals. Overall, this study shows that those primarily concerned by PrEP tend to dismiss ethical questions regarding PrEP itself in the name of its efficacy and the empowerment it allows, but they would rather stress the impact PrEP can have on individuals’ sexual behaviour and how it can affect their autonomy if it is prescribed blindly without taking into consideration the specific living context and life history of each PrEP user. (shrink)

The rare case of the patient unwilling to disclose genetic data to his or her family provides an opportunity to expand the atomistic conception of the autonomous individual in medical decision-making. Medical practitioners naturally avoid violating patient autonomy and privacy. However, unwilling disclosure can damage the health of people other than the patient. In this situation, professionals must weigh the principle of autonomy against the nature of relationships, duties, and confidentialities between patient, professional, and family. The paradigm case studied is (...) that of a patient with a potentially dangerous heart condition, Long QT Syndrome 3. Patients with Long QT 3 are at high risk for dying of ventricular tachycardia during rest, especially from ages 40–60. Once familial genetic testing was completed, the proband's mother, who was positive for the mutation, chose not to inform her estranged sister of the diagnosis. This paper examines the ethical duties of the physician to inform a patient's extended family of a serious genetic diagnosis, with a focus on the emotional and psychological effects of genetic testing. The need to adapt the process of violating confidentiality around considerations for the patient's emotional state and narrative will be addressed. This approach considers the patient’s narrative, standpoint, and relationships as a way to develop a support plan and will present a guideline for cases where the probability of significant harm to others supersedes the patient’s preference of non-disclosure as well as the physician’s respect of confidentiality. The paper seeks to expand the conversation on genetic testing and autonomy beyond principles by considering all parties involved and emphasizes the use of the varied resources available to medical practitioners, especially to provide the best help possible without overburdening physicians with duties. (shrink)