Disenchantment and clinical ethics

In search of good care: the methodology of phenomenological, theory-oriented ‘N=N case studies’ in empirically grounded ethics of care Abstract This paper proposes a new perspective on the methodology of qualitative inquiry in (care) ethics, especially the interaction between empirical work and theory development, and introduces standards to evaluate the quality of this inquiry and its findings. The kind of qualitative inquiry the authors are proposing brings to light what participants in practices of care and welfare do and refrain from doing, and what they undergo, in order to offer ‘stepping stones’, political-ethical insights that originate in the practice studied and enable practitioners to deal with newly emerging moral issues. As the authors’ aim is to study real-life complexity of inevitably morally imprinted care processes, their empirical material typically consists of extensive and comprehensive descriptions of exemplary cases. For their research aim the number of cases is not decisive, as long as the rigorous analysis of the cases studied provides innovative theoretical insights into the practice studied. Another quality criterion of what they propose that should be called ‘N=N case studies’ is the approval the findings receive from the participants in the practice studied.

Just choice: a Danielsian analysis of the aims and scope of prenatal screening for fetal abnormalities Abstract Developments in Non-Invasive Prenatal Testing (NIPT) and cell-free fetal DNA analysis raise the possibility that antenatal services may soon be able to support couples in non-invasively testing for, and diagnosing, an unprecedented range of genetic disorders and traits coded within their unborn child’s genome. Inevitably, this has prompted debate within the bioethics literature about what screening options should be offered to couples for the purpose of reproductive choice. In relation to this problem, the European Society of Human Genetics (ESHG) and American Society of Human Genetics (ASHG) tentatively recommend that any expansion of this type of screening, as facilitated by NIPT, should be limited to serious congenital and childhood disorders. In support of this recommendation, the ESHG and ASHG cite considerations of distribution justice. Notably, however, an account of justice in the organization and provision of this type of screening which might substantiate this recommendation has yet to be developed. This paper attempts to redress this oversight through an investigation of Norman Daniels’ theory of Just health: meeting health needs fairly. In line with this aim, the paper examines what special moral importance (for Just health) screening for the purpose of reproductive choice might have where concerning serious congenital and childhood disorders in particular. The paper concludes that screening for reproductive choice where concerning serious congenital and childhood disorders may be important for providing women with fair opportunity to protect their health (by either having or not having an affected child).

Does clinical ethics need a Land Ethic? Abstract A clinical ethics fit for the Anthropocene—our current geological era in which human activity is the primary determinant of environmental change—needs to incorporate environmental ethics to be fit for clinical practice. Conservationist Aldo Leopold’s essay ‘The Land Ethic’ is probably the most widely-cited source in environmental philosophy; but Leopold’s work, and environmental ethics generally, has made little impression on clinical ethics. The Land Ethic holds that “A thing is right when it tends to preserve the integrity, stability, and beauty of the biotic community. It is wrong when it tends otherwise.” I argue that a Land Ethic helps to re-frame problems in clinical ethics that more common philosophical approaches struggle to handle, and that it can be incorporated into clinical ethics without succumbing to “environmental fascism”. I motivate viewing problems in clinical ethics from the perspective of the ‘integrity of the biotic community’, then illustrate how this perspective can offer guidance where more commonly-invoked theories—such as consequentialism and Kantian-inspired approaches—struggle, using antimicrobial resistance in nosocomial infection as a case study. The Land Ethic equips us to understand human values as arising within and inseparable from a social-ecological context, and by treating communities (both human and biotic) as valuable in themselves rather than just through the aggregate welfare of their individual participants, we can avoid problems with the ‘repugnant conclusion’ and utility monster that plague utilitarian accounts.

Falling on deaf ears: a qualitative study on clinical ethical committees in France Abstract The French medical context is characterized by institutionalization of the ethical reflection in health care facilities and an important disparity between spaces of ethical reflection. In theory, the healthcare professional may mobilise an arsenal of resources to help him in his ethical reflection. But what happens in practice? We conducted semi-structured interviews with 22 health-care professionals who did and did not have recourse to clinical ethical committees. We also implemented two focus groups with 18 professionals involved in various spaces of ethical reflection in order to let them debate about a better way to organize ethical reflection in their institutional contexts. The qualitative analysis allows to us to underline the coexistence of different conceptions of ethics among health care professionals. We also observed that the participants in our study shared the experience of ethically problematic situations as roadblocks in the process of communication and decision-making. We therefore report the factors which favour or inhibit the ethical course leading to the resolution or at the very least soothing of the situation at hand. Finally, we discuss methodological issues and underline the fact that while the patient is at the heart of the professional’s ethical preoccupations, this does not imply that they are actors in decisions that concern them.

Theranostics: is it really a revolution? Evaluating a new term in medicine Abstract Theranostics or theragnostics are new terms which start to appear occasionally in publications from 2001 onwards, with a marked increase in references from 2011. In the last few years more than 1100 articles using this term were published each year. In 2011 the journal Theranostics was founded. This paper addresses the question of whether this new term is appropriate. The etymology of the term is analysed. A literature search for definitions of “theranostics” is carried out and the definitions examined as to whether they give grounds for justifying the use of a new term. The differences between diagnostics and therapy are explored. A broad and a narrow definition are found. According to the broad definition theranostics provides a closer relationship between diagnostics and therapy. According to the narrow definition diagnostics and therapy become a single intervention. On closer examination it turns out that in the narrow definition the diagnostics capacities are limited to monitoring. Neither the broad nor the narrow definition actually demonstrate a new concept in medicine. Rather, they describe the well-known practice of medical decision making. In this respect, the new term cannot be justified. The level of diagnostics is new (molecular/nano) but not the relationship between diagnostics and therapy. The term theranostics is misleading as it obscures the existing differences between diagnostics and therapy and wrongly insinuates that steps between diagnostics and therapy could be omitted.

Clinical sympathy: the important role of affectivity in clinical practice Abstract Bioethics has begun to see the revaluation of affects in medical practice, but not all of them, and not necessarily in the sense of affects as we know them. Empathy has been accepted as important for good medical practice, but only in a way that strips it of its affectivity and thus prevents other affects, like sympathy, from being accepted. As part of a larger project that aims at revaluing the importance of affectivity in medical practice, the purpose of this paper is to develop a clinical sympathy that can serve as a trainable skill for medical professionals. While everyday sympathy may be problematic as a professional skill for physicians, this does not imply that sympathy should be entirely rejected. As a natural part of our moral psychology, sympathy is an intersubjective affect that aids in our interactions with others and our decision-making abilities. I present here a theory of clinical sympathy as an affective response to patients, in which physicians are both attuned to their affective response and understand how their affects are influencing their beliefs and judgments. In this way, clinical sympathy serves as a trainable skill that can aid physicians in their interactions with their patients.

Confucianism and organ donation: moral duties from xiao (filial piety) to ren (humaneness) Abstract There exists a serious shortage of organs for transplantation in China, more so than in most Western countries. Confucianism has been commonly used as the cultural and ethical reason to explain the reluctance of Chinese and other East-Asian people to donate organs for medical purposes. It is asserted that the Confucian emphasis on xiao (filial piety) requires individuals to ensure body intactness at death. However, based on the original texts of classical Confucianism and other primary materials, we refute this popular view. We base our position on the related Confucian norms of filial piety and ren (humaneness, humanity or benevolence), the tension between differentiated love and universal love, and belief in the goodness of human nature. In light of this, we argue that the Confucian ethical outlook actually calls for organ donation at an individual level, and supports an opt-out (presumed consent) system at the level of social policy. Furthermore, because the popular view is based on a number of dominant but misleading modes of thinking about cultural differences, our revisionist account of Confucian moral duties regarding organ donation has implications for developing a more adequate transcultural and global bioethics. These will be discussed and expanded upon.

Mobile health ethics and the expanding role of autonomy Abstract Mhealth technology is mushrooming world-wide and, in a variety of forms, reaches increasing numbers of users in ever-widening contexts and virtually independent from standard medical evidence assessment. Yet, debate on the broader societal impact including in particular mapping and classification of ethical issues raised has been limited. This article, as part of an ongoing empirically informed ethical research project, provides an overview of ethical issues of mhealth applications with a specific focus on implications on autonomy as a key notion in the debate. A multi-stage model of references to the potential of mhealth use for strengthening some or other form of self-determination will be proposed as a descriptive tool. It illustrates an assumed continuum of enhanced autonomy via mhealth broadly conceived: from patient to user autonomy, to improved health literacy, and finally to the vision of supra-individual empowerment and democratised, participatory health and medicine as a whole. On closer examination, however, these references are frequently ambivalent or vague, perpetuating the at times uncritical use of established autonomy concepts in medical ethics. The article suggests zooming in on the range of autonomy-related aspects against the backdrop of digital innovation and datafied health more generally, and on this basis add to existing frameworks for the ethical evaluation of mhealth more specifically.