Sophie Pennec

In 2010, we conducted a survey on the end of life in metropolitan France using a representative sample related to deaths that occurred in December 2009. On that occasion we obtained approximately 5,200 responses, enabling us to produce our first ever quantitative results on end-of-life medical decisions in metropolitan France, while showing how few people used or knew they could indicate their own legally binding advance directives (“living will”) on the matter. 

The overseas departments were not included in that first survey because the sampling rate was too low to do analyses at the relatively fine département level. A specific survey was needed, and just as there are overseas department variants of the VIRAGE survey (Violence and Gender Relations) and a survey grouping together several surveys of metropolitan France—MFV (Migration, Family, and Aging) and MFV2—so our End-of-Life in the Overseas Departments survey (FDVDOM: Fin-de-Vie dans les Départements d’Outre-Mer) is part of a survey dynamic developed at INED to obtain better knowledge and furnish statistics on the overseas departments in connection with topics affecting that population.

Like the end-of-life survey of metropolitan France, FDVDOM, conducted from 2019 to 2022 in France’s four overseas departments (Martinique, Guadeloupe, French Guiana, Reunion), aims to provide a panoramic view of end-of-life conditions. By extending the survey to those departments, we wanted to collect previously unknown information on their specific geographic areas and learn to what degree their singular demographic, social, historical, cultural, and religious worship characteristics resulted in different end-of-life processes than in metropolitan France. For example, mortality conditions are worse at younger ages in the DOMs, and many more people die at home there.

In the FDVDOM survey we also took account of recent legal changes and included questions on the provisions of the February 2016 Claeys-Leonetti end-of-life patients’ rights bill and continuous deep sedation until death. 

Alongside the survey of physicians in the overseas departments, for which we received 1,812 responses, we conducted approximately forty semi-directive interviews with close family members of persons recently deceased (six months to a year earlier) to learn more about care and accompaniment of the dying. Given that people often die at home in those departments, family members play a particularly large and important role at the end of life. 

Because in recent decades, several important demographic and legal changes pertaining to the subject have occurred in France. To begin with, high numbers of older and even extremely old persons are dying at around the same time due to population aging. And people are increasingly likely to die of chronic diseases that require long-term treatment and care. Moreover, whereas the surveys indicate that French people prefer to die at home, in reality 50% of them die in hospital and 20% in institutions as death becomes more “medicalized.” It is therefore interesting and instructive to understand these developments and their effects. 

Furthermore, end-of-life issues have been legislated on several times in France in the last decades. The first bill, in 1999, concerned palliative care. It was followed by the Loi Kouchner of March 4, 2002, which established patients’ rights to palliative care, pain relief, respect of patient dignity and patient choices, while specifying the role of patient’s “person of trust” (or health care proxy). 

Then came the Loi Leonetti, dated April 22, 2005, and containing three essential provisions: the notion of treatment proportionality and non-maleficence (prohibiting excessive or unreasonable life-prolonging measures); the obligation to provide palliative care and ensure care continuity; and reinforcement of the principle of patient autonomy. And the Loi Claeys-Leonetti of February 2, 2016, which strengthened patients’ rights to palliative treatment by legally requiring physicians to follow patients’ advance directives while clarifying certain situations, particularly the right to continuous deep sedation until death in cases where it has been medically determined that the patient has little time left to live. 

All these questions—place of death, palliative care, decisions to end or limit active treatment, family roles, requests for euthanasia—are a focus of much societal attention at this time, and the purpose of our research is to provide objective information on these them. 

On this point we offer several guarantees.

First, at the institutional level, a steering committee has been established made up of representatives of the Health Ministry, the ethics section of the National Council of Physicians’ Association (Conseil National de l’Ordre des Médecins), and researchers at INSERM (National Institute of Health and Medical Research). Moreover, survey protocols and research projects have generally been approved beforehand by the CESREES (Expert committee for health research and research evaluation) and France’s data protection agency, the CNIL, which is particularly attentive to guarantees of anonymity.

Then there is the questionnaire itself. Questionnaire design requires patient and physician characteristics to be defined in broad enough terms that respondents cannot be identified. Some of the questions in the End-of-Life survey of the overseas departments were designed with fewer response options to guarantee absolute anonymity. 

Last, there’s our data collection method. The point is to ensure that no connection can be made between the name of a physician respondent and his or her responses. We used a method similar to voting by correspondence, involving intervention by a trusted third party and a confidentiality obligation.