Camille Hervé

The Inforare project aims to set up a system for the sharing of clinical and familial data, in order to study how genes are related to the severity of sickle cell disease. While the computerisation of clinical records represents a valuable research goal, an ethical framework is necessary to guarantee patients' protection and their rights in this developing field. Issues relating to patient information during the Inforare study were analysed by the steering committee. Several major concerns were discussed by the committee and formalised in the patients' information letter: educating patients to aid the recruitment of family members, rules of confidentiality and the disclosure of aggregate, individual and unexpected research results. This paper presents the main issues addressed

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

Several studies have explored differences between North American and European doctor patient relationships. They have focused primarily on differences in philosophical traditions and historic and socioeconomic factors between these two regions that might lead to differences in behaviour, as well as divergent concepts in and justifications of medical practice. However, few empirical intercultural studies have been carried out to identify in practice these cultural differences. This lack of standard comparative empirical studies led us to compare differences between France and the USA regarding end-of-life decision-making. We tested certain assertions put forward by bioethicists concerning the impact of culture on the acceptance of advance directives in such decisions. In particular, we compared North American and French intensive care professional's attitudes toward: (1) advance directives, and (2) the role of the family in decisions to withhold or withdraw life-support

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

Background and objective: Assuming the hypothesis that the general practitioner can and should be a key player in making end-of-life decisions for hospitalised patients, perceptions of GPs’ role assigned to them by hospital doctors in making withdrawal decisions for such patients were surveyed.Design: Questionnaire survey.Setting: Urban and rural areas.Participants: GPs.Results: The response rate was 32.2% , and it was observed that 70.8% of respondents believed that their participation in withdrawal decisions for their hospitalised patients was essential, whereas 42.1% believed that the hospital doctors were sufficiently skilled to make withdrawal decisions without input from the GPs. Most respondents were found to believe that they had the necessary skills and enough time to participate in withdrawal decisions. The last case of treatment withdrawal in hospital for one of their patients was described by 40% of respondents, of whom only 40.0% believed that they had participated actively in the decision process. The major factors in the multivariate analysis were the GP’s strong belief that his or her participation was essential , information on admission of the patient given to the GP by the hospital department , rural practice , visit to the patient dying in hospital and a request by the family to be kept informed about the patient .Conclusion: Strong interest was evinced among GPs regarding end-of-life issues, as well as considerable experience of patients dying at home. As GPs are more closely corrected to patients’ families, they may be a good choice for third-party intervention in making end-of-life decisions for hospitalised patients