From "exceptional ethics" to public health ethics. Patients and proxies facing COVID-19. Ethics and public health during COVID-19 / D'une « éthique d'exception ¼ à une éthique de la santé publique. Patients et proches face à la COVID-19. Éthique et santé publique en temps de COVID-19.

The study aimed to elicit the perception and ethical considerations of patients and proxies with respect both to the individual medical decisions and public health decisions made during the COVID-19 crisis. It used a qualitative, multi-center study based on semi-directive interviews, conducted by an interdisciplinary team. The analysis was conducted using a thematic analysis approach and an ethical framework. Three themes emerged from the analysis: 1) patients, unlike proxies, did not complain about their diminished role in the decision-making process. Both highlighted the importance of "basic care" as opposed to a technical approach to treatment; 2) despite the transparency of the information process, a deep "crisis of trust" has developed between citizens and public authorities; 3) although both patients and proxies accepted the limitations of personal liberties imposed in the name of public health, they argued that these limitations should respect certain boundaries, both temporal and spacial. Above all, they should not affect basic affective human relationships, even if such boundaries are a factor in an increased risk of infection. The study showed that there is a need to reconsider the definition and the main principles of public health ethics, namely transparency and proportionality.

L'étude vise à analyser la perception que les patients et les proches de patients pris en charge pendant la crise de la COVID-19, ont pu avoir de leur prise en charge, et leurs réflexions éthiques sur la place et la définition de la santé publique. L'étude a utilisé une méthode qualitative et multicentrique. Les entretiens semi-directifs ont été conduits par une équipe pluridisciplinaire et analysés avec une approche thématique et une grille de lecture éthique à partir des principes de l'éthique biomédicale. Trois thèmes ont émergé : 1) Les patients ont exprimé peu de revendications de participer aux décisions médicales les concernant, contrairement aux proches qui se sont sentis exclus de leur rôle. Tous ont mis l'accent sur l'importance des soins de base par rapport aux soins techniques ; 2) La gestion de la crise n'est pas jugée sévèrement, mais une crise de confiance importante a été mise en évidence, malgré la « transparence ¼ affichée de l'information ; 3) les contraintes collectives ont été largement acceptées au nom de la solidarité, mais on a jugé qu'elles doivent avoir des limites (temporelle et spatiales). Surtout, elles ne doivent pas empêcher des relations humaines simples et essentielles. L'étude met en évidence qu'il est nécessaire de développer une réflexion nouvelle autour de l'éthique de la santé publique : il convient de questionner les principes de « transparence ¼ et de « proportionnalité ¼ et d'adopter une définition de « santé publique ¼ plus large que la minimisation du risque infectieux.

Euthanasia and End-of-Life Decisions: From the Empirical Turn to Moral Intuitionism.

Most medical learned societies have endorsed both "equivalence" between all forms of withholding or withdrawing treatment and the "discontinuity" between euthanasia and practices to withhold or withdraw treatment. While the latter are morally acceptable insofar as they consist in letting the patient die, the former constitutes an illegitimate act of actively interfering with a patient's life. The moral distinction between killing and letting die has been hotly debated both conceptually and empirically, most notably by experimental philosophers, with inconclusive results. This article employs a "revisionary" intuititionist perspective to discuss the results of a clinical ethics study about intensivists' perceptions of withhold or withdraw decisions. The results show that practitioners' moral experience is at odds with both the discontinuity and equivalence theses. This outcome allows us to revisit certain concepts, such as intention and causal relationship, that are prominent in the conceptual debate. Intensivists also regard end-of-life decisions as being on a scale from least to most active, and whether they regard active forms of end-of-life decisions as ethically acceptable depends on the overarching professional values they endorse: the patient's best chances of survival, or the patient's quality of life.

Team-family conflicts over end-of-life decisions in ICU: A survey of French physicians' beliefs.

INTRODUCTION: Conflicts between relatives and physicians may arise when decisions are being made about limiting life-sustaining therapies (LST). The aim of this study was to describe the motives for, and management of team-family conflicts surrounding LST limitation decisions in French adult ICUs. METHODS: Between June and October 2021, French ICU physicians were invited to answer a questionnaire. The development of the questionnaire followed a validated methodology with the collaboration of consultants in clinical ethics, a sociologist, a statistician and ICU clinicians. RESULTS: Among 186 physicians contacted, 160 (86%) answered all the questions. Conflicts over LST limitation decisions were mainly related to requests by relatives to continue treatments considered to be unreasonably obstinate by ICU physicians. The absence of advance directives, a lack of communication, a multitude of relatives, and religious or cultural issues were frequently mentioned as factors contributing to conflicts. Iterative interviews with relatives and proposal of psychological support were the most widely used tools in attempting to resolve conflict, while the intervention of a palliative care team, a local ethics resource or the hospital mediator were rarely solicited. In most cases, the decision was suspended at least temporarily. Possible consequences include stress and psychological exhaustion among caregivers. Improving communication and anticipation by knowing the patient's wishes would help avoid these conflicts. CONCLUSION: Team-family conflicts during LST limitation decisions are mainly related to requests from relatives to continue treatments deemed unreasonable by physicians. Reflection on the role of relatives in the decision-making process seems essential for the future.

The "Commitment Model" of Clinical Ethics Consultation: Revisiting the Meaning of Expertise and Professionalization.

While in Europe the debate over clinical ethics consultants' expertise and professionalization is ongoing, in France it remains rather marginal. In this article, we illustrate how the "commitment model" adopted by the Clinical Ethics Center of the Greater Paris University Hospitals situates itself in such a debate. We first present the commitment model by drawing upon an emblematic case of consultation, and then describe, in turn, its understandings of democratic expertise and of the professionalization of clinical ethics consultation. Accordingly, the commitment model advocates against individual consultants' certification, but it does not rule out the need for training nor a certain form of professionalization of clinical ethics consultation services.

Empirical research in clinical ethics: The 'committed researcher' approach.

After the 'empirical turn' in bioethics, few specific approaches have been developed for doing clinical ethics research in close connection with clinical decision-making on a daily basis. In this paper we describe the 'committed researcher' approach to research in clinical ethics that we have developed over the years. After comparing it to two similar research methodological approaches, the 'embedded researcher' and 'deliberative engagement', we highlight its main features: it is patient-oriented, it is implemented by collegial and multidisciplinary teams, it uses an ethical grid to build the interview guide, and it is geared towards bringing the results to bear on the public debate surrounding the issue at stake. Finally, we position our methodological approach with respect to the 'is vs. ought' distinction. We argue that our 'commitment researcher' approach to clinical ethics research takes concerned people's life-building values as the main data, and compares them to the larger normative framework underlying the medical practice at stake.

Humanity and "Ordinary Abuse": Learning from Hospital Patients' Letters of Complaint.

The prevention of abuse is a crucial issue in medical ethics. At the very least, the hospital setting should respect basic human rights, including dignity and life. In this respect, the normative reference to the concept of humanity plays a crucial role. However, the public as well as health-care professionals need to be aware of a more subtle and invisible form of abuse, "ordinary abuse." It can be defined as the undue suspension of the implicit rules of ordinary interactions, whose importance has been stressed by Erving Goffman and Harold Garfinkel. Moreover, the respect of "ordinary humanity" has an important ethical value, both in promoting "considerateness" and in sustaining a world of experience common to all human beings. Excerpts from a few letters of complaint from hospitalized patients will serve as an illustration of this important phenomenon and its ethical relevance.

Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views.

Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' experience is, and whether they consider it ethically appropriate. In order to contribute to the debate, we initiated a study in 2009 to evaluate parental and health care professionals (HCP) perspectives, after they experienced WAHN for a newborn. The study included 25 cases from 5 different clinical neonatology departments. We interviewed both the parents and some of the HCP who cared for the baby, at least 6 months after this latter deceased. We proceeded through in-depth individual qualitative interviews. Content was analyzed for themes and patterns that emerged from the data. Some parents expressed that WANH offered an opportunity to the family to spend a few demedicalized days with the baby before she dies, without any tubes and machines, and to be well supported by the HCP during this palliative stage. But others evaluated the practice in retrospect as a terrible ordeal. All said that, at least, the time of waiting for death to ensue should not last too long. After a few days, it becomes unbearable because of the transformation of the baby's appearance and because they, as parents, began to wonder if she was not dying from starvation rather than from her initial disease. An important proportion of HCP also expressed some kind of ethical unease. This was due to the psychological violence involved in the decision for a human being to stop feeding a little one, and also to the difficulty to deal with the fundamental intention behind the decision of WANH: indeed, could it be claim that it does not presuppose the intention of provoking the infant's death? The discussion focuses on the point to know if WANH can be considered as a source of progress from an ethical point of view, particularly in comparison with earlier practices-that in France could involve active euthanasia by lethal injection. We argue that when HCP are merely focused on avoiding that WAHN could be construed as a way of intending to hasten the baby's death, the practice is at risk to be implemented in a way that becomes ethically counterproductive. Focusing on this intention easily distract the clinical teams from what should be their ultimate concern, namely the baby's comfort during the dying process, as well as the support owned to her parents. To conclude, we suggest that the ethical priorities, when WANH is decided, should be the support due to the patient and her family on the one hand, and, on the other hand to implement it in such a way that at least the baby seems to have died of her initial disease and never of starvation. This means that HCP have a duty to control the timing of death, even though this might be incompatible with the worry to avoid the intention of hastening the baby's death.

The near-failure of advance directives: why they should not be abandoned altogether, but their role radically reconsidered.

Advance directives (ADs) have been hailed for two decades as the best way to safeguard patients' autonomy when they are totally or partially incompetent. In many national contexts they are written into law and they are mostly associated with end-of-life decisions. Although advocates and critics of ADs exchange relevant empirical and theoretical arguments, the debate is inconclusive. We argue that this is so for good reasons: the ADs' project is fraught with tensions, and this is the reason why they are both important and deeply problematic. We outline six such tensions, and conclude with some positive suggestions about how to better promote patients' autonomy in end-of-life decision. We argue that ADs should continue to be an option but they cannot be the panacea that they are expected to be.

When Patients' Values Challenge Professional Integrity: Which Way Out?

Patients' values and choices sometimes conflict with health-care providers' professional integrity. Increasingly, health-care teams face requests for care they deem inappropriate, particularly around decisions near the end of life. Professional standards are useful in some ways, but are insufficient from an ethical point of view. Indeed, it can be important to remember that patients' values do not necessarily lose their legitimacy when they conflict with physicians' professional integrity. By examining a paradigmatic clinical ethics consultation case, this essay explores a possible way to address situations in which doctors' integrity and patients' values clash. In order for professional integrity to play a constructive rather than adversary role in decision making, it should be understood in an inclusive way, as a combination of interconnected values in play: professional, contextual, and personal.

The French bioethics public consultation and the anonymity doctrine: empirical ethics and normative assumptions.

The French bioethics laws of 1994 contain the principles of the anonymity and non commodification of all donations of body parts and products including gametes in medically assisted reproduction. The two revisions of the law, in 2004 and 2011 have upheld the rule. In view of the latest revision process, the French government organized a large public consultation in 2009 ("Etats généraux de la bioéthique"). Within the event a "consensus conference" was held in Rennes about different aspects of assisted reproduction (access, anonymity, gratuity and surrogacy). In what follows we shall first describe the anonymity clause for gamete donations in the French law and the debates surrounding it. We shall then analyse the procedure used for the 2009 public consultation and the related consensus conference, as well as its upshot concerning the anonymity doctrine. In this respect we shall compare the citizens' own recommendations on the gamete anonymity issue and its translation in the consultation's final report drafted by a philosopher mandated by the organizing committee. Whereas the final report cited some fundamental ethical arguments as reason for upholding the provisions of the law-most notably the refusal of the 'all biological' approach to reproductive issues-citizens were more careful and tentative in their position although they also concluded that for pragmatic reasons the anonymity rule should continue to hold. We shall argue that the conservative upshot of the public consultation is due to some main underlying presuppositions concerning the citizens' role and expertise as well as to the specific design of the consensus conference. Our conclusion will be that public consultations and consensus conferences can only serve as an empirical support for devising suitable bioethics norms by using second-order normative assumptions.

The "Commitment Model" for Clinical Ethics Consultations: Society's Involvement in the Solution of Individual Cases.

Several approaches to clinical ethics consultation (CEC) exist in medical practice and are widely discussed in the clinical ethics literature; different models of CECs are classified according to their methods, goals, and consultant's attitude. Although the "facilitation" model has been endorsed by the American Society for Bioethics and Humanities (ASBH) and is described in an influential manual, alternative approaches, such as advocacy, moral expertise, mediation, and engagement are practiced and defended in the clinical ethics field. Our Clinical Ethics Center in Paris was founded in 2002 in the wake of the Patients' Rights Act, and to date it is the largest center that provides consultation services in France. In this article we shall describe and defend our own approach to clinical ethics consultation, which we call the "Commitment Model," in comparison with other existing models. Indeed commitment implies, among other meanings, continuity through time, a series of coherent actions, and the realization of important social goals. By drawing on a recent consultation case, we shall describe the main steps of our consultation procedure: interviews with major stakeholders, including patients and proxies; case conferences; and follow up. We shall show why we have chosen the term "commitment" to represent our approach at three different but interrelated levels: commitment towards patients, within the case conference group, and towards society as a whole.

Personal identity as a form of freedom.

A commentary on "The Ethics of Anonymous Gamete Donation: Is There a Right to Know One's Genetic Origins?" by Inmaculada de Melo-Martín, in the March-April 2014 issue.

The French bioethics debate: norms, values and practices.

In 1994, France passed bioethics laws regulating assisted reproductive technologies, organ donations and prenatal diagnosis. These laws were based upon a few principles considered as fundamental: the anonymity and gratuity of all donations concerning the elements of the human body, free and informed consent, and the interdiction of all commercial transactions on the human body. These laws have been the object of heated debates which continue to this day. On the basis on a few clinical ethics studies conducted by the Center for clinical ethics at the Cochin Hospital in Paris, the articles presented in this special issues explore several aspects of the bioethics debate, and relate it to the more general question of the complex relationship between norms, practices and values.

Clinical ethics and values: how do norms evolve from practice?

Bioethics laws in France have just undergone a revision process. The bioethics debate is often cast in terms of ethical principles and norms resisting emerging social and technological practices. This leads to the expression of confrontational attitudes based on widely differing interpretations of the same principles and values, and ultimately results in a deadlock. In this paper I would like to argue that focusing on values, as opposed to norms and principles, provides an interesting perspective on the evolution of norms. As Joseph Raz has convincingly argued, "life-building" values and practices are closely intertwined. Precisely because values have a more indeterminate meaning than norms, they can be cited as reasons for action by concerned stakeholders, and thus can help us understand how controversial practices, e.g. surrogate motherhood, can be justified. Finally, norms evolve when the interpretations of the relevant values shift and cause a change in the presumptions implicit in the norms. Thus, norms are not a prerequisite of the ethical solution of practical dilemmas, but rather the outcome of the decision-making process itself. Struggling to reach the right decision in controversial clinical ethics situations indirectly causes social and moral values to change and principles to be understood differently.