Clinical ethics has developed significantly in Europe over the past 15 years and remains an evolving process. While sharing our experiences in different European settings, we were surprised to discover marked differences in our practice, especially regarding the position and role of patients. In this paper, we describe these differences, such as patient access to and participation or representation in ethics consults. We propose reasons to explain these differences, hypothesizing that they relate to the historic and sociocultural context of implementation (...) of clinical ethics consultation services (Cecs), as well as the initial aims for which each structure was established. Then, we analyse those differences with common ethical arguments arising in patient involvement. We conclude that there is no unique model of best practice for patient involvement in clinical ethics, as far as Cecs reflect on how to deal with the challenging ethical issues raised by patient role and position. (shrink)

The Clinical ethics centre in Paris offers its services equally to doctors and patients/proxies. Its primary goal is to re-equilibrate doctor–patient roles through giving greater voice to patients individually in medical decisions. Patients are present at virtually all levels, initiating consults, providing their point of view and receiving feedback. The implications of patients' involvement are threefold. At an operational level, decision-making is facilitated by repositioning the debate on ethical grounds and introducing a dynamic of decisional partnership, although contact with patients (...) can make it difficult to deny their demands and set the limits of our role. Ethically, it reinforces patients' autonomy and grants them a place of veritable ethics ‘actors’, with the danger that this may become excessively autonomy oriented. Finally, at a collective level, the programme fulfils its political purpose in promoting patients' rights and the ideal of démocratie sanitaire, but complicates balancing individual demands with collective values. (shrink)

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. (shrink)

Advance directives 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. (shrink)

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. (shrink)

This piece outlines concrete cases of benefit sharing that occur in relation to the sharing of human (biological) samples. For example, it surveys Indonesia’s decision, in 2006, to stop sharing virus samples of H5N1 (avian influenza) with the WHO Global Influenza Surveillance Network (GISN). It also outlines some of the ethical issues that arise in these cases.

Withdrawing Artificial Nutrition and Hydration in the neonatal intensive care units 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 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. (shrink)

A pilot center for clinical ethics in France opened with the establishment of the “Centre d'éthique clinique” at Cochin Hospital in Paris, September 2002. Unlike the longer history in the United States of providing ethics consultation for ethical issues deriving from physician–patient interactions, this center marks a new development in bringing clinical ethics to Europe.

In the French language, it sounds very odd indeed to associate the word futility with serious things, and especially with medicine. The term is most often used to speak of “frivolities,” such as trinkets or any other bling-bling. “On parle à Paris et on ne pense guère, la journée se passe en futilités”, Voltaire wrote in a 1765 letter ; or “De cette indigne classe où nous rangent les hommes, de borner nos talents à des futilités”, said Molière in his (...) 1672 play, Les Femmes savantes. It looks as though the term... (shrink)

The aim of this article is to flesh out gender by drawing connections between the experience of pain and the experience of womanhood. The article builds upon two themes in feminist work (the constitution of woman through her effacement, and the inscription of gender on the body) and proposes to analyse `effacement' in terms of an embodied sense of being `gutted out', or made `immaterial'. I use this imagery of `gutting out' to suggest that effacement is experienced through the body, (...) and in terms of the presence of pain rather than merely in terms of lack or absence (of voice or subjectivity). Thus I share the view that gender is performed through inscriptions on the body, but I argue that this work of gendering involves hurting and injuring women's bodies; and it is this pain that I attend to in the article. I draw upon Scarry's analysis of the body in pain as a symbolic framework to discuss the pain of womanhood in terms of the annihilation of the self as it is engulfed in a mass of hurting flesh. (shrink)

Is there any ethical justification for limiting the reproductive autonomy and not make assisted reproductive technologies available to certain prospective parents? We present and discuss the results of an interdisciplinary clinical ethics study concerning access to assisted reproductive technologies (ART) in situations which are considered as ethically problematic in France (overage or sick parents, surrogate motherhood). The study focused on the arguments that people in these situations put forward when requesting access to ART. It shows that requester’s arguments are based (...) on sound ethical values, and that their legitimacy is at least as strong as that of those used by doctors to question access to ART. Results reveal that the three implicit normative arguments that founded the law in 1994, which are still in force after the bioethics law revision in July 2011—the welfare of the child, the illegitimacy of a “right to a child,” and the defense of the so called “social order”—are challenged on several grounds by requesters as reasons for limiting their reproductive autonomy. Although these results are limited to exceptional situations, they are of special interest insofar as they give voice to the requesters’ own ethical concerns in the ongoing political debate over access to ART. (shrink)

This paper will present and discuss our conclusions about the ethics of living donation for liver transplant (LDLT) after 8 year of collaboration between our clinical ethics consultation service and liver transplant teams, in the course of which we met with all donor-candidates. We will focus on the results of a follow-up study that was conducted in order to evaluate the long-term consequences for potential donors and to interview them on the ethical aspects of the screening process. This study was (...) conducted from April 2007 to November 2009 and consisted of interviews with donor-candidates, regardless of whether they underwent harvest surgery, at least 1 year after the recipient’s transplant. We explored their views about their own and the recipients’ physical and psychological condition, changes in family and career dynamics, their experience as potential or real donors, and their views about LDLT process in general. Results shed new light on the ethical grounds of LDLT and allow us to envisage new ways of improving the ethical soundness of current procedures and practices. In particular, we argue that the purpose of an ethics committee should be to provide follow-up support for the donors rather than merely to check the freedom of donors’ consent. We also suggest that the recipient’s consent deserves more attention than it currently receives. (shrink)

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. (shrink)