What are end-of-life conditions like in French overseas departments?

This survey follows on from an initial major investigation by the Institut national d'études démographiques (INED) into the end of life in metropolitan France, the results of which were published in 2012-2015. In particular, these sought to better understand the reality of decisions made by doctors in end-of-life situations. Tracing the course of these people in the month preceding their death, with the possible successions of hospitalizations and returns home, has enabled us to better understand why home care, although desired by most of them, ultimately does not take place. Indeed, our society tends to medicalize the end of life, and many situations are considered unmanageable at home.

This first survey did not, however, take into account the French overseas departments. After several years of preparation, a second investigation has now been launched. "It's possible that the overseas departments present certain specificities compared with metropolitan France: more deaths are counted at home, and the structures dedicated to end-of-life support are not quite the same: there are fewer EHPADs overall, for example, and some overseas departments have no palliative care units. Conducting a separate survey allows us to have a larger sample and therefore to analyze things more finely", explains Sophie Pennec, researcher at INED.

While many studies focus on a single end-of-life location, such as emergency departments, this work by INED has the advantage of taking into consideration all forms of end-of-life, at home, in hospital or in retirement homes. This panorama provides a better understanding of the conditions for implementing laws on patients' rights and the end of life (the law of April 22, 2005, known as the "Léonetti Law", and the law of February 2, 2016, known as the "Claeys-Léonetti Law").

The survey targets doctors who have issued death certificates over a given period. They receive a paper questionnaire comprising some forty items. They are asked about the wishes expressed by patients and their families. They are asked whether these wishes were respected, whether family members were involved in discussions about medical decisions at the end of life, and whether patients had designated a trusted support person or written advance directives¹. Questions were also asked about the nature of medical decisions at the end of life: was treatment stopped? Was it continued? Was it unnecessary? Was care limited? Was sedation used? All options are considered, including those that are not legal, hence the importance of guaranteeing respondents' anonymity.

In this survey, confidentiality and medical secrecy are fully respected. The researchers have set up a postal voting system, with a double envelope, for the return of responses: a trusted third party retrieves and enters the information without knowing the identity of the respondents. INED, for its part, obtains the list of doctors who have responded to the questionnaire, enabling it to manage reminders, but without knowing what each respondent has answered individually. The analysis can then be carried out on totally anonymous global data.
A first wave of data collection has already taken place in La Réunion. The second will begin at the end of January 2021, at the same time as a first wave in the French West Indies and French Guiana. This fieldwork will continue until the end of the year. We look forward to analyzing the results.

For more information:
See the profile of Sophie PENNEC in our researchers directory.
See the survey on the INED website:
https://fdv.site.ined.fr/fr/

1. The insufficient use of advance directives is one of the major findings of the survey carried out in metropolitan France.