[What are the obstacles to drawing up a death certificate in a home setting ? A survey of doctors in Normandy]. / Quels freins à l'établissement du certificat de décès à domicile ? Enquête auprès de médecins sur le territoire de Normandie.

INTRODUCTION: Drafting a death certificate is an obligation for any physician called upon to note a death. It has a legal and epidemiological impact. The objective of this study is to highlight the obstacles encountered by professionals when this process takes place in a home setting. METHOD: A study was carried out by means of a questionnaire sent to doctors in the Normandy region. RESULTS: One fifth (20%) of the general practitioners (GPs), 25% of the SAMU practitioners (intervening in mobile emergency throughout the country), 27.3% of SOS doctors (intervening 24 hours a day in the deceased person's home in the absence of a GP) stated that they had at least once refused to establish a death certificate. Only 36.4% of SOS doctors, 62.5% of emergency physicians and 41% of GPs considered the drafting of a death certificate to be one of their mandatory missions. No less than 17% of GPs, 25% of SAMU doctors and 9% of SOS doctors stated that due to lack of time, they were occasionally unable to travel to fill out a death certificate, a factor causing delays that were detrimental, especially for the surviving relatives. We highlighted several other obstacles to the completion of death certificates: the difficulty of completing them accurately without knowledge of the deceased person's history, possible inability of professionals on tight schedules to deal with unforeseen requests and, more rarely, the issues raised by an absence of remuneration. CONCLUSION: Our study highlights major obstacles in the preparation of death certificates, obstacles that should be taken into consideration insofar as they affect the quality of the data collected, and entail ethical challenges.

[Breast cancer screening program in France: for optimization of the information]. / Dépistage organisé du cancer du sein en France : pour une optimisation de l'information.

BACKGROUND: Based on international and national recommendations, organized breast cancer screening in France raises questions of medical ethics built around the key concepts of individual autonomy and public health policy. Because of the evolving knowledge, professionals and institutions involved in the program must review the ethical values associated with this medical practice. METHODS: The ethical aspects of organized breast cancer screening were studied. In response to newly acquired knowledge highlighted by a review of texts governing this practice in France, proposals for changes resulting from reflections of a working group coordinated by the National Cancer Institute are presented. RESULTS: Ethical issues raised by screening must find expression in the general principles of the program's organization: acceptability of screening, efficiency, adverse effects, equity of access, free care…, but also at different stages of the procedure: information delivery, first and second invitations, refusal of further diagnostic investigation… CONCLUSION: A better match between breast cancer screening and recently developed knowledge requires optimal information delivery to women targeted by the program as well as a stronger role for the referring healthcare professional.

Fetal reduction of triplet pregnancy: one or two?

OBJECTIVE: To review outcomes following reductions in trichorionic triplet pregnancies at our institution. METHOD: Retrospective analysis of the outcome of trichorionic triamniotic triplets reduced to singletons (group I, n = 44) or twins (group II, n = 136) at 10 and 12 weeks of gestation. RESULTS: Reduction to one or two was based on parent's preference, hence unrelated to any specific obstetrical or maternal issue. Early fetal loss rate (e.g. <24 weeks) was 9.1% in group I versus 5.1% in group II (p = 0.83). In group I, the take-home baby rate was 86.4% versus 91.9% in group II (p = 0.8). In group I, 17.5% of the women gave birth between 33 and 36(+6) weeks of gestation versus 40.6% in group II (p = 0.026). Delivery beyond 37 weeks was 72.5% in group I and 46.9% in group II (p = 0.01). Intrauterine growth restriction rate was 27.0% in group I versus 45.0% in group II (p = 0.049). CONCLUSION: Reduction to one rather than two fetuses led to significantly higher term delivery rate without significant differences in fetal loss rate or take-home baby rate.

Post mortem scientific sampling and the search for causes of death in intensive care: what information should be given and what consent should be obtained?

PURPOSE: The search for cause of death is important to improve knowledge and provide answers for the relatives of the deceased. Medical autopsy following unexplained death in hospital is one way to identify cause of death but is difficult to carry out routinely. Post mortem sampling (PMS) of tissues via thin biopsy needle or 'mini incisions' in the skin may be a useful alternative. A study was undertaken to assess how this approach is perceived by intensive care doctors and also to evaluate how this practice is considered in ethical terms in France. METHODS: A study of PMS practices immediately after death in 10 intensive care departments was performed. The medical director of each centre was interviewed by telephone and asked to describe practices in their unit and to outline the questions raised by this practice. RESULTS: PMS is routinely performed in 70% of the units which responded, without systematically obtaining formal consent and without precise rules for communicating results. Approaches to PMS differed between centres, but all physicians felt that PMS is useful for the scientific information it gives and also for the information it provides for relatives. All physicians regret the lack of standards to structure PMS practices. CONCLUSION: Information from post mortem examinations is important for society to inform about causes of death, for doctors to improve practices and for decision-makers responsible for organising care. Debate persists regarding the balance between individual rights and community interests. It is suggested that an approach for identifying cause of death could easily be integrated into the relationship between carers and relatives, provided full transparency is maintained.

Is the non-respect of ethical principles by health professionals during first-trimester sonographic Down syndrome screening damaging to patient autonomy?

OBJECTIVES: To evaluate the understanding of health professionals involved in first-trimester ultrasound screening of the ethical stakes involved by addressing three questions regarding: how much these professionals know about Down syndrome screening by nuchal translucency thickness measurement; their personal opinion with respect to this screening test; and their attitude with respect to their patients, in order to answer the question: 'Are ethical principles respected when women are proposed ultrasound screening during the first trimester of pregnancy?' METHODS: We studied the medical population in the east part of France by sending a questionnaire to each of 460 medical correspondents. This questionnaire attempted to evaluate the respondent's level of medical knowledge, their personal opinion with respect to first-trimester screening and their attitude towards their patients. We adapted the three-dimensional diagram designed by Marteau et al. to develop a measure of informed choice regarding screening. Only health professionals who were relatively well informed and adopted an autonomy-oriented approach were considered to be in a position to obtain true consent from their patients, respecting ethical principles in terms of competence and the autonomy of patients. RESULTS: We received 276 (60%) responses to the questionnaire. Only 31.9% of health professionals had an approach that facilitated obtaining true consent from their patients and respected the ethical principles of competence and patient autonomy; 46% were in favor of the screening test and adopted an autonomy-oriented approach but were poorly informed; and 15.4% had a directive-authoritarian approach combined with poor knowledge. Regression analysis showed that two independent factors (speciality (P = 0.031) and location of practice (P = 0.034)) affected the level of medical knowledge, and two independent factors (location of practice (P = 0.034) and the type of medical practice i.e. public or private (P < 0.05)) affected the opinion of health professionals about the screening test. Two independent factors (speciality (P < 0.001) and the age of the health professional (P = 0.02)) affected the attitudes of health professionals towards their patients. CONCLUSION: The answer to the question 'Are ethical principles respected when women are proposed ultrasound screening during the first trimester of pregnancy?' is clearly 'No'. Major effort is required to ensure that the decisions made by patients are based on a possibility of true choice.

Ethical issues arising from the requirement to sign a consent form in palliative care.

French healthcare networks aim to help healthcare workers to take care of patients by improving cooperation, coordination and the continuity of care. When applied to palliative care in the home, they facilitate overall care including medical, social and psychological aspects. French legislation in 2002 required that an information document explaining the functioning of the network should be given to patients when they enter a healthcare network. The law requires that this document be signed. Ethical issues arise from this legislation with regard to the validity of the signature of dying patients. Signature of the consent form by a guardian or trustee, a designated person--the Person of Trust--transforms the doctor-patient relationship into a triangular doctor-patient-third-party relationship.

[What become the decisions of limitation of treatments after discharge from the paediatric intensive care unit?]. / Que deviennent les décisions de limitation ou d'arrêt des traitements actifs à la sortie de réanimation pédiatrique ?

UNLABELLED: The fact that some children may survive despite a decision of limitation of treatments (DLT) is taken in Paediatric Intensive Care Unit (PICU) is a recent data. Although the French-speaking Group of Paediatric Intensive and Emergency Care (GFRUP) has published guidelines for limitation of treatments in PICU, outcome of these surviving children has not yet been studied. PURPOSES: To evaluate transmission of data concerning DLT in PICU toward teams in charge of children after the PICU stay and to evaluate perennility of these decisions. METHOD: Cohort study in children for whom DLT was discussed and who were discharged from PICU between 2002 and 2006. The study included an analysis of the medical files and discussions with the physicians in charge of children at the time of the study, including their responses to standardised scenarios concerning the outcome of their patients. RESULTS: Among the 96 children for whom DLT was discussed in PICU, 37 were discharged toward another unit. Only 1 discharge letter mentioned the DLT. At the time of the study, the Pediatric Overall Performance Category (POPC) score had increased in 16 children and was stable in 12. All the 6 children with a worsening POPC score died, without PICU readmission. The physicians in charge of children after the PICU stay did not remember any DLT. For 18 children (including 8 with previous DLT) PICU readmission would be proposed in case of life-threatening event. Their median POPC score at the time of study was lower than that of other children (3 versus 4; p=0.001). CONCLUSION: This study shows a lack of DLT data transmission, which is in contradiction with the GFRUP's guidelines. Correction of this lack is essential to improve cooperation between units in charge of these children.

[Analysis of the ethical issues raised by a ten-year epidemiology program in French Guiana: limitations of the current legal framework and solutions adopted]. / Analyse des enjeux éthiques soulevés au cours d'un programme de recherche épidémiologique de dix années en Guyane française : limites de l'encadrement actuel et solutions adoptées.

BACKGROUND: This paper discusses the ethical aspects of a large research program in virology, conducted since 1994 and which has evolved in parallel with the elaboration of bioethics laws in France. This research, which involved the collection of a considerable amount of epidemiological data in the field, focused on epidemiological determinants (mother to child transmission, genetic susceptibility/resistance) of the human oncogenic retrovirus human T cell lymphotropic virus type 1 (HTLV-1). Data were collected from a specific population (Noirs Marrons) living in remote areas in French Guiana (South America). This ethnic group of African descent is highly endemic for HTLV-1 and associated adult T cell leukemia/lymphoma. The population has lived for two centuries on either side of the Maroni river, which constitutes the frontier between French Guiana and Surinam. The low socioeconomic and education levels of a large part of this population are mainly explained by a recent housing/residence fixation on the French side of the Maroni river. It is also linked to significant immigration from Surinam due to the civil war, which lasted for five years in the late 1990s, in this country. Conducting epidemiological surveys in this peculiar context illustrates the limitations of the available current legal framework in France for such studies. Indeed, several important ethical issues arose concerning not only individual and population benefits, but also specificities of the given information and of the informed consent. Another question concerns individual information feed-back in such a context of persistent viral infection, with a very low disease incidence, in a population with a relatively low education level. The goal of this work was mainly to report several of the ethical issues encountered and to discuss possible ways of achieving better information deliver and consent procedures in such a context. Indeed, these procedures should include new ideas and regulations promoting a real partnership, in order to conduct long-term epidemiological studies in populations with a low education level.

Concerning mistreatment of older people: clinical and ethical thoughts based on a study of known cases.

Following a report by the Health Ministry recommending a greater implication of general practitioners (GP) in the diagnosis and care of mistreated older people, we wanted to evaluate what was actually their role in this matter. A study was made of files of mistreated older persons referred to the social services in a Parisian suburb. For each file, we noted who raised the first suspicions of mistreatment, who diagnosed it, what happened next, and what precisely the GP's role was. Out of 600 files, we found 12 cases, concerning 14 persons (two couples). Although all the patients had health problems requiring frequent consultations with their GP, none of these situations were diagnosed by the GP. In all cases, the GP played only a secondary role, if at all. The following points are discussed: The link between family problems and history cannot be ignored in the follow up of such situations. The GP's role is discussed regarding clinical knowledge of mistreatment and the legal rules they have to deal with. Our results bring to light how the balance between the person's autonomy and the necessary direct action is especially delicate in this field.

The international criminal tribunal for the former Yugoslavia (ICTY) and the forensic pathologist: ethical considerations.

Since 1991, war crimes in the former Yugoslavia have been the subject of several international medico-legal investigations of mass graves within the framework of inquiries led by the International Criminal Tribunal for the former Yugoslavia (ICTY). Forensic pathologists involved in the ICTY missions could be subjected to ethical tensions due to the difficulties of the missions, the emergent conflicts between forensic scientists of the investigating teams and the original nature of the ICTY proceedings. In order to study the nature of such ethical tensions, we sent a questionnaire to 65 forensic pathologists who have been involved in the ICTY missions. The rate of response was 38%. The majority of forensic pathologists questioned (n=18) did not know how the medico-legal data was exploited by the ICTY. Three of them have been subjected to pressures. Three of them were aware of mass grave sites knowingly not investigated by the ICTY. Fifteen considered that the ICTY respected the elementary rules of the law and four of them questioned the impartiality of the justice led by the ICTY. Two conflicting types of ethics can be drawn from these results: conviction ethics, which are shared by most of the forensic pathologists questioned, and responsibility ethics. In the former, the forensic pathologist completely agrees with the need for an international war crimes tribunal, even if such justice can be challenged regarding the respect of human rights and impartiality. In the latter, he or she needs to conduct him or herself in ways that do not infringe impartiality. As medical deontology duty requires impartiality ethics, discursive ethics are needed to ease ethical tensions and to suggest ethical guidelines. Alternatives to international justice, through a truth and reconciliation commission and by way of humanitarian missions combining victims' identification with forensic investigations for historical purposes, could be considered.

[Quality of anonymous delivery procedures: analysis of practices and ethical issues]. / Accouchement sous X et qualité de l'anonymat des dossiers: analyse des pratiques et des enjeux éthiques.

OBJECTIVES: The purpose of this study was to assess implementation of procedures for anonymous delivery and also to determine the awareness of the medical team. MATERIAL AND METHOD: We reviewed retrospectively all deliveries performed in a Paris maternity ward during the years 2000-2003 where the mother requested application of the anonymous procedure. A questionnaire was also addressed to all physicians and midwives in the same institution in order to evaluate their knowledge of the procedures available and their point of view. RESULTS: Among the seventeen deliveries examined, the anonymous procedure was not completely fulfilled for 11 since the name of the mother could be identified. The quality of the files depended on the date at which the decision to use the anonymous procedure was made: delivery was more anonymous when the decision was made at the first consultation, less so when made later. The questionnaires revealed that professionals lacked information and were insufficiently aware of the procedures available. CONCLUSION: It appears useful to establish a standard procedure in order to better protect the parturient's wishes and comply with French law (4 March 2002). This point is particularly important since at the infant's majority, he/she may request access to personal information contained in the medical file.

[Theoretical risk management and legitimacy of the precautionary principle in medicine. Look back at HIV contamination through blood transfusion in France, twenty years ago]. / La gestion d'un risque potentiel et la légitimité du principe de précaution en médecine. Regard vingt ans après sur la contamination transfusionnelle par le VIH en France.

The precautionary principle first appeared in France during the health crisis following the contamination of patients with HIV via blood transfusion. This study analyses whether the risk associated with blood transfusion was taken into account early enough considering the context of scientific uncertainty between 1982 and 1985. The aim was to evaluate whether a precautionary principle was applied and whether it was relevant. First, we investigated the context of scientific uncertainty and controversies prevailing between 1982 and 1985. Then we analysed the attitude and decisions of the French authorities in this situation to determine whether a principle of precaution was applied. Finally, we explored the reasons at the origin of the delay in controlling the risk. Despite the scientific uncertainties associated with the potential risk of HIV contamination by transfusion in 1983, we found that a list of recommendations aiming to reduce this risk was published in June of that year. In the prevailing climate of uncertainty, these measures could be seen as precautionary. However, the recommended measures were not widely applied. Cultural, structural and economic factors hindered their implementation. Our analysis provides insight into the use of precautionary principle in the domain of blood transfusion and, more generally, medicine. It also sheds light on the expectations that health professionals should have of this principle. The aim of the precautionary principle is to manage rather than to reduce scientific uncertainty. The principle is not a futile search for zero risk. Rather, it is a principle for action allowing precautionary measures to be taken. However, we show that these measures must appear legitimate to be applied. This legitimacy requires an adapted decision-making process, involving all those concerned in the management of collective risks.

[A difficult transition from childhood to adult healthcare: the case of epilepsy]. / Le difficile passage à l'âge adulte en matière de soins : l'exemple de l'épilepsie.

OBJECTIVE: The purpose of this study was to analyze modalities of the transition from pediatric to adult epilepsy care and patients' acquisition of autonomy. METHOD: This study was conducted using semidirected interviews composed of three major parts: the patient's criteria of transition toward adult healthcare (factors taken into account, anticipation, the patient's opinion, etc.), conditions (teamwork with the neurologists, transmission of the medical record, continuity of health care, etc.), and the role played by social workers and psychologists. We interviewed 10 doctors belonging to six major Parisian hospital units involved in the monitoring of children and adolescents with epilepsy and working in Pediatric Neurology Departments of the Île-de-France region. RESULTS: For most of the doctors, reaching 18 years of age was the major argument taken into account to consider transition to adult care. According to the doctors interviewed, parents are generally worried when their child has to find another doctor (7/10). According to eight out of 10 doctors, the neurologist is selected to take over. The doctors recognize the importance of psychologists and social workers even if they are not always included. The process by which the patient gains autonomy depends a great deal on the role played by the pediatricians and parents, although some parents are very protective. This behavior weakens the patient's capacity for autonomy and it varies according to the degree of his or her physical and/or neurological disabilities. Furthermore, developing autonomy requires interdisciplinary work that is not yet fully in place. CONCLUSION: The lack of structures well-adapted to the uniqueness of each patient and the lack of coordination between the various institutions do not favor the acquisition of autonomy. A network that could efficiently respond to the needs of epileptic patients as well as medical care tailored to adolescents would be the answer to this dilemma.

[Factors of risk perception and risk acceptability: a contribution for the knowledge of the perception of the risk associated with blood transfusion]. / Les facteurs de perception et d'acceptabilité du risque: un apport pour la connaissance des représentations du risque transfusionnel.

The concept of risk cannot be limited to simply knowing the probability of occurrence and the seriousness of the damages caused. It's a matter of social construction and numerous elements contribute towards its perception and acceptability. These elements have been studied for 20 years or so. Some of these elements influence risk perception such as awfulness, unfamiliarity, the number of people exposed to it, other elements influence its acceptance such as individual perceptions, social factors, ethics and equity. Their knowledge allows a better understanding of the evolution of perception and of the risk acceptability in general and transfusion risk in particular.

[Legal obligation to inform the patient on the theoretical risk of CJD transmission by blood]. / L'obligation d'informer le patient sur le risque potentiel de transmission de la MCJ par voie sanguine.

Legal obligation to inform the patient does not include theoretical risks. However, due to the very sensitive situation of blood transfusion in France, following the tainted-blood affair, a circular was issued to extend this obligation (1998) to inform the theoretical risk of CJD transmission by blood. Ethically speaking, this raises three questions: Is it beneficial to the patient to be informed on theoretical risk? Is the use of a "circular", less legally binding, appropriate? Finally, what is the situation in other countries? The evolution of the law tends to be more positive in that it no longer involves any theoretical risk.

[The responsibility of the physician prescriber of blood products]. / La responsabilité du médecin prescripteur de produits sanguins labiles.

Blood transfusion presents mainly virological, bacteriological, immunohaematological and volemic risks; with the latter two particularly concerning health establishment employees. This article tackles the physician's responsibility in blood transfusion. Taking into account the regulations that surround the activity, prescribing physicians must know and put into action the relative requirements in their practises in order to avoid taking on its responsibility, or that of the health establishment in which they work, as any lack of respect for the rules and regulations could result in being held liable for any side affects suffered by the patient. The article has the objective of identifying the main regulation requirements in order to control them despite a difficult environment, from the point of view of patients' rights regarding the benefits and the consequences of transfusion. These requirements focus mainly on information and patient consent, the prescription of blood products as well post transfusion information and the follow-up care. Proof of respect for these rule requirements must be available for each of these aspects.

[The precautionary principle applied to blood transfusion. What is its impact on practices and risk management?]. / Le principe de précaution appliqué à la transfusion sanguine: quel impact sur les pratiques et la gestion des risques?

The precautionary principle has boomed in the French public health sector through blood transfusion. There has been, however, no perambulatory reflection on the definition, objectives, methods of application or consequences of this principle. The question of the pertinence of its application remains unanswered. This study, based on interviews with blood transfusion practitioners, aims to establish their perceptions of the precautionary principle's application in this specific field and of its consequences in terms of risk management and patients' rights. The pros and cons of this application are analysed based on these perceptions. According to our analysis, the precautionary principle seems to be born of confusion. It is seen more as a way to protect decision makers than patients and, if taken to extremes, could prejudice medical logic. Nevertheless, it also brings measures which renew and encourage evolution in transfusion risk management.

[Parent's information and prenatal diagnosis of cerebral malformation with an uncertain prognosis]. / Information des couples et diagnostic prénatal d'une malformation cérébrale à pronostic incertain: analyse des pratiques.

UNLABELLED: Fetal ultrasounds examinations allow identification of brain malformations; announce of diagnosis and information about prognosis may be difficult when malformation is rare and prognosis uncertain. OBJECTIVES: In this study we tried to analyze how fetal imaging for prenatal screening was organized and how couples were managed and supported. METHODS: We focused on the procedures used to inform couples: content, method of delivery and consequences. A referent physician in each large multidisciplinary center for prenatal diagnosis in Paris area was questioned by semi-directed interview. RESULTS: Our study showed that it is difficult to standardize the way in which information is supplied before and after fetal ultrasounds examination; uncertainty about prognosis led more often to abortion. CONCLUSION: Thus, couples should have clear and complete information provided by a multidisciplinary team including specialists particularly concerned by the malformation (neuropediatrician and/or neurosurgeon)--moreover when prognosis is uncertain, in order to support them, and to accompany their decision concerning pregnancy.