[Refusal of transfusion: What is the right place for the principle of respect for autonomy?] / Refus de transfusion - quelle est la juste place du principe de respect de l'autonomie ?

Nineteen people refusing a blood transfusion in anticipation of thoracic surgery were met at the Clinical Ethics Center (AP-HP, Paris, France). The article reflects on the right place that respect for autonomy plays in medical decisions regarding (non)transfusion when medical practice would recommend it. Three patient profiles emerge: "categorical refusals", "refusals while affirming the need to live" and "refusals accompanied by doubt". Without neglecting the arguments relating to other principles of biomedical ethics (beneficence, non-maleficence, justice), the idea is to enable healthcare professionals to better assess the different situations they face and in particular those in which respect for autonomy seems essential. If the majority of people concerned by the issue are Jehovah's Witnesses, and although this religion is sometimes stigmatized, this work sheds light on the place of their wishes hold in medical decisions on (non)transfusion. Healthcare professionals could contact ethics units and ask them to carry out this same assessment in their own different.

[Can we remove a pacemaker in the name of unreasonable obstinacy? The story of Odette]. / Peut-on enlever un pacemaker au nom de l'obstination déraisonnable ? - L'histoire d'Odette.

Title: Peut-on enlever un pacemaker au nom de l'obstination déraisonnable ? - L'histoire d'Odette. Abstract: « Les humanités en santé : histoire de cas ¼ sont coor- données par Claire Crignon, professeure d'histoire et de philosophie des sciences à l'université de Lorraine, qui a créé le master « humanités biomédicales ¼ à Sorbonne université.

[Are advance directives useful for doctors and what for?]. / Quelle utilité des directives anticipées pour les médecins ?

OBJECTIVES: In France, the law has introduced the possibility to write advance directives since 2005. In this paper, we will present the results of a study designed for checking how much people over 75 years are interested by this new tool. METHODS: The inquiry consisted in deep qualitative interviews (around 45') to further understand what people included in the study have to say about advance directives, but also about the conditions of ageing and dying. The study sample was composed of 8 over 75 years subgroups, chosen for being illustrative of different health status and/or disabling status. Finally, a last subgroup was also included, called "referent", because composed of people, all members of the "Association pour le droit à mourir dans la dignité" (ADMD), and as such supposed to be pro-advance directives. Interviews content was analysed through qualitative analysis referent methods ("Analyse qualitative en sciences humaines et sociales", Paillé et Muschielli, "Grounded Theory", Glaser). POPULATION OF THE STUDY: One hundred and eighty-six patients were included (106 female, 80 male, mean age 82.7 ans), 167 in the general group and 19 in the "ADMD" group. RESULTS: Ninety percent in the general group said that they never heard about advance directives before the inquiry. After having been informed by us about what advance directives were for, 83% remained not interested they said, some because they felt they were not personally concerned, others expressed that the tool appears to them inefficient - "things never happen the way you planned it", not useful - "doctors will act as they will decide whatever will be written", or even more potentially dangerous - "writing advance directives might lead doctors not to be as much therapeutically aggressive as for other people". Only 28 persons in the general group (17%), together with the 19 of the ADMD group, said they were interested by advance directives. They all were quite similar according to their personal character: they were quite strong and voluntary people, claiming firmly about their autonomy, independently of any sociodemographic profile. Furthermore, the interest for advance directives appears to be completely independent from the health or disabling status. Another important result of the study is that patients generally express themselves as being very confident and trustful in their doctors. They do not fear to be over-treated and having to support any futile treatment. CONCLUSION: Around 20% of people are very much concerned by advance directives and do really expect that their wishes will be respected. The authors suggest that advance directives should be for them really respected, even if the French law let doctors free at this point to decide what the best interest of the patient actually is and if they should or not respect in this case what the patient wrote as advance directives. Around 30% of other people appear interested to speak with someone of the time they will still live. Their concern is more to express what is important for them in terms of still living and quality of life, than to express very clear advance directives about the way they would like to dye. The last learning of the study is that there is still a lot to do if we want more people precisely express something on the conditions of their dying. Doctors might have a fundamental pedagogic role in that respect: they should better inform patients about the limits of medicine and tell them more about the new complexity of medical decision-making at the end of life due to recent improvements in techniques.

Access to assisted reproductive technologies in France: the emergence of the patients' voice.

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.

Law, bioethics and practice in France: forging a new legislative pact.

In France, bioethics norms have emerged in close interaction with medical practices. The first bioethics laws were adopted in 1994, with provisions for updates in 2004 and most recently, in 2011. As in other countries, bioethics laws indirectly refer to certain fundamental values. The purpose of this paper is threefold. First, I shall briefly describe the construction of the French bioethics laws and the values they are meant to protect. Secondly, I will show that the practice of clinical ethics, as reported in a few studies on ART, living organ donation and PGD, challenge the role attributed to doctors as "gatekeepers" of those fundamental values. Thirdly, I will suggest that the quality of medical practices would improve if the law focused on strengthening the tacit pact between doctors and patients, rather than putting doctors in charge of enforcing societal values. Doctors, for their part, would limit their role to what they can do best: provide sufficient patient support and safe care. Against those who argue that we should dispense with bioethics laws altogether, I hold that the laws are useful in order to limit the development of abusive practices. However, a new legislative approach should be adopted which would a positive presumption in favor of patients' requests.