Surveying End-of-Life Medical Decisions in France: Evaluation of an Innovative Mixed-Mode Data Collection Strategy.

BACKGROUND: Monitoring medical decisions at the end of life has become an important issue in many societies. Built on previous European experiences, the survey and project Fin de Vie en France ("End of Life in France," or EOLF) was conducted in 2010 to provide an overview of medical end-of-life decisions in France. OBJECTIVE: To describe the methodology of EOLF and evaluate the effects of design innovations on data quality. METHODS: EOLF used a mixed-mode data collection strategy (paper and Internet) along with follow-up campaigns that employed various contact modes (paper and telephone), all of which were gathered from various institutions (research team, hospital, and medical authorities at the regional level). A telephone nonresponse survey was also used. Through descriptive statistics and multivariate logistic regressions, these innovations were assessed in terms of their effects on the response rate, quality of the sample, and differences between Web-based and paper questionnaires. RESULTS: The participation rate was 40.0% (n=5217). The respondent sample was very close to the sampling frame. The Web-based questionnaires represented only 26.8% of the questionnaires, and the Web-based secured procedure led to limitations in data management. The follow-up campaigns had a strong effect on participation, especially for paper questionnaires. With higher participation rates (63.21% and 63.74%), the telephone follow-up and nonresponse surveys showed that only a very low proportion of physicians refused to participate because of the topic or the absence of financial incentive. A multivariate analysis showed that physicians who answered on the Internet reported less medication to hasten death, and that they more often took no medical decisions in the end-of-life process. CONCLUSIONS: Varying contact modes is a useful strategy. Using a mixed-mode design is interesting, but selection and measurement effects must be studied further in this sensitive field.

When Physicians Report Having Used Medical Drugs to Deliberately End a Patient's Life: Findings of the "End-of-Life in France" Survey.

CONTEXT: The debate on the decriminalization of active assistance in dying is still a topical issue in many countries where it is regarded as homicide. Despite the prohibition, some physicians say they have used drugs to intentionally end a patient's life. OBJECTIVES: To provide some empirical grounding for the ongoing debate. METHODS: Using data from the End-of-Life in France survey (a representative sample of 15,000 deaths that occurred in December 2009, questionnaires completed anonymously by the physicians who had certified the deaths), we selected all the cases where the physician had used one or more drugs to intentionally end a patient's life and compared the decisions and decision-making process with the conditions imposed by the French law for decisions to withhold or withdraw life-supporting treatments and by the Belgian law on euthanasia. RESULTS: Of the 36 cases analyzed, four situations seemed to be deliberate acts after explicit requests from the patients, and only two seemed to fulfill the eligibility and due care conditions of the Belgian euthanasia law. Decisions made without any discussion with patients were quite common, and we observed inadequate labeling, frequent signs of ambivalence (artificial feeding and hydration not withdrawn, types of drug used), and little interprofessional consultation. Where the patient had requested euthanasia, the emotional burden on the physician was heavy. CONCLUSION: These findings underscore the pressing need for a clarification of the concepts involved among health professionals, patients, and society at large, and better training and support for physicians.

[The places of death of people aged 80 and over in France]. / Les lieux de la fin de vie des personnes de 80 ans et plus en France.

While the places and causes of death are the subject of abundant literature, the circumstances surrounding the end of life, the ultimate phase of existence, remain largely not explored in France. The pathways through different living places taken by people aged 80 and over during the last month of existence and the factors associated with them are described thanks to the unique information and data collected by the "End of Life in France" survey.

A new scoring system in cancer genetics: application to criteria for BRCA1 and BRCA2 mutation screening.

BACKGROUND: In hereditary forms of cancer due to mutations of genes such as BRCA1 and BRCA2, methods have been proposed to predict the presence of a mutation in a family. METHODS: Relying on carriage probability computation is the most predictive, but scores are a good proxy and avoid using computer software. An empirical method, the Manchester scoring system, has been elaborated for BRCA1 and BRCA2 mutation identification. We propose a general scoring system based on a transformation of the carriage probability. Up to an approximation, the transformed carriage probability becomes an additive score. We applied this new scoring system to the diagnosis of BRCA1-associated and BRCA2-associated breast-ovarian cancer predisposition. Using simulations, its performance was evaluated and compared with that of the Manchester scoring system and of the exact probability. Finally, the score system was used on a sample of 4563 families screened for BRCA1 and BRCA2 mutations. RESULTS: The performance of the new scoring system was superior to the Manchester scoring system, but the probability computation remained the most predictive. The better performance of the new scoring system was attributed to accounting for unaffected family members and for the degree of kinship of relatives with the proband. CONCLUSIONS: The new scoring system has a theoretical basis and may be applied to any cancer family syndrome and, more generally, to any disease with monogenic subentities, in which the causal gene mutations have been identified. It will be easily modified when additional predictive factors are found.

End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients' rights and end of life.

BACKGROUND: The "Patients' Rights and End of Life Care" Act came into force in France in 2005. It allows withholding/withdrawal of life-support treatment, and intensified use of medications that may hasten death through a double effect, as long as hastening death is not the purpose of the decision. It also specifies the requirements of the decision-making process. This study assesses the situation by examining the frequency of end-of-life decisions by patients' and physicians' characteristics, and describes the decision-making processes. METHODS: We conducted a nationwide retrospective study of a random sample of adult patients who died in December 2009. Questionnaires were mailed to the physicians who certified/attended these deaths. Cases were weighted to adjust for response rate bias. Bivariate analyses and logistic regressions were performed for each decision. RESULTS: Of all deaths, 16.9% were sudden deaths with no information about end of life, 12.2% followed a decision to do everything possible to prolong life, and 47.7% followed at least one medical decision that may certainly or probably hasten death: withholding (14.6%) or withdrawal (4.2%) of treatments, intensified use of opioids and/or benzodiazepines (28.1%), use of medications to deliberately hasten death (i.e. not legally authorized) (0.8%), at the patient's request (0.2%) or not (0.6%). All other variables held constant, cause of death, patient's age, doctor's age and specialty, and place of death, influenced the frequencies of decisions. When a decision was made, 20% of the persons concerned were considered to be competent. The decision was discussed with the patient if competent in 40% (everything done) to 86% (intensification of alleviation of symptoms) of cases. Legal requirements regarding decision-making for incompetent patients were frequently not complied with. CONCLUSIONS: This study shows that end-of-life medical decisions are common in France. Most are in compliance with the 2005 law (similar to some other European countries). Nonetheless, the study revealed cases where not all legal obligations were met or where the decision was totally illegal. There is still a lot to be done through medical education and population awareness-raising to ensure that the decision-making process is compatible with current legislation, the physician's duty of care and the patient's rights.

[A new scoring system for the diagnosis of BRCA1/2 associated breast-ovarian cancer predisposition]. / Nouveau système de score pour le diagnostic des prédispositions aux cancers du sein et de l'ovaire associées à BRCA1/2.

Criteria have been proposed for genetic testing of breast and ovarian cancer susceptibility genes BRCA1 and BRCA2. Using simulations, this study evaluates the efficiency (sensitivity, positive predictive value [PPV] and specificity) of the various criteria used in France. The efficiency of the criteria published in 1998, which are largely used, is not optimal. We show that some extensions of these criteria provide an increase in sensitivity with a low decrease in specificity and PPV. The study shows that scoring systems (Manchester, Eisinger) have similar efficiency that may be improved. In this aim, we propose a new scoring system that takes into account unaffected individuals and kinship coefficients between family members. This system increases sensitivity without affecting PPV and specificity. Finally, we propose a two-step procedure with a large screening by the physician for recommending genetic counselling, followed by a more stringent selection by the geneticist for prescribing genetic testing. This procedure would result in an increase of genetic counselling activity but would allow the identification of almost 80% of mutation carriers among affected individuals, with a mutation detection rate of 15% and a specificity of 88%.