tells us about the Fin de Vie en France [End-of-life in France] survey
A demographer at INED and associate researcher at the Australian National University, Sophie Pennec co-directs the "Fin de Vie en France" survey with Alain Monnier.
(Interview conducted in February 2013)
Why should we be in interested in the end of life?
Several major demographic and legislative changes related to dying have occurred in the last decades. Massive numbers of old and very old persons are dying as a result of population ageing. In France today 85% of deaths occur at over 60 years and 50% over 80. People are increasingly dying of long chronic diseases, and most deaths now occur in hospital (50%) or institutions (20%).
France’s Act of April 22, 2005, contains three essential specifications: the notion of therapeutic proportionality and non-malfeasance (which prohibits unreasonable obstinacy and futile medical care); the obligation to provide palliative care and the duty to ensure continuity of care and accompaniment of the dying person; a reinforced autonomy principle.
End-of-life questions-where to die, palliative care, decisions
to withdraw or withhold active medical treatment, staffing needs,
the role of the family in accompanying the dying person, requests
for euthanasia-are at the heart of our current concerns, and this
study aims to contribute objective information on these
How do you interview people on such a sensitive subject, and ask questions about practices that in some cases are not legal?
Three levels of guarantee have been established:
Institutional oversight. The survey has a steering committee that includes representatives of the Ministry of Health and the ethics section of the Conseil National de l’Ordre des Médecins [national board of physicians] as well as INSERM researchers. It has been approved by the Comité Consultatif National d’Ethique and been authorized by the CNIL [Commission Nationale de l’Informatique et les Libertés, personal data protection commission], which was particularly careful in checking anonymisation and anonymity guarantees.
Questionnaire design: Patient and physician characteristics are defined in a broad enough way to make identification impossible.
Data collection mode: Regardless of whether a physician answers by internet or printed questionnaire, there is no way that his/her answers can be linked to his/her name. Anonymity is ensured by trusted third parties who are bound by confidentiality. They anonymise questionnaires by removing the identifiers used to keep track of physicians’ participation and send them reminders if necessary.
Is France very different from other European countries when it comes to end-of-life care?
Compared to the results of the "European End-of-Life Decisions" survey (Eureld) and surveys recently conducted in Belgium and the Netherlands, the proportion of deaths in France involving a decision that possibly or certainly hastened the moment of death (48% in France in 2010) is within the average for European countries. It is higher than the figure for Italy (29% in 2001) but lower than in the Netherlands (57% in 2010); it is close to the figures for Switzerland (51% in 2001) and Belgium (48% in 2007). The practice of intensifying pain relief treatment is comparable in France to what was observed in Belgium in 2007 but higher than in most countries surveyed in 2001 by the Eureld. Lastly, decisions to limit or withdraw treatment are as frequent in France as in Belgium and the Netherlands. France is among countries with a low percentage of assisted deaths (physician-administered drugs explicitly intended to end life), and it is far below countries that have legalized euthanasia such as Belgium and the Netherlands. No medically assisted suicides were reported in this survey, and cases of euthanasia (requested by patients) are rare.