End-of-Life Surveys in the French Overseas Departments : Data Collection Protocol

Résumé 0

Background A number of changes regarding the end of life have occurred in recent decades, notably legislative changes. This stage of life, which usually comes at an advanced age, is now largely medicalised and institutionalised. This research project in the French overseas departments follows on from a study conducted in metropolitan France in 2010 on the circumstances in which people spend their last months of life. From the metropolitan France study, the researchers were able to assess the implementation of the 2005 Leonetti Law, improve understanding of residential transitions prior to death, the role of carers, and people’s wishes as to where they want to die. End-of-life circumstances in the overseas departments are not known. And yet the population is ageing fast, people commonly die at home, the organisation of family life is changing fast, the share of poverty is higher and there are fewer residential aged care facilities. These factors all shape end-of-life conditions in different ways, so it will be useful to acquire more data about the situation in these departments. Aims The purpose of this research is to give an overview of end-of-life conditions in the French overseas departments (Martinique, Guadeloupe, French Guiana and La Réunion). The aim is to see in what ways they differ from those pertaining in metropolitan France and document what public policy changes would be needed to meet these departments’ particular needs. The first research strand explores possible inequalities in medical care at this stage of life between the four overseas departments and metropolitan France: do the same individual or general situations receive the same medical care everywhere? A second strand focuses on implementation of the two laws that grant rights to end-of-life patients in France: the law of 22 April 2005 and that of 16 February 2016. It compares medical practice with the provisions of the legislation and describes how much patients and their families know about these laws and their application. The third strand considers the more sociological aspects regarding family and social context at this stage of life, how patient care and support is organised and who is involved. Patients’ families were asked about their perceptions and expectations, with a view to improving quality of life for caregivers and hence also for people in their last stage of life. Method The data had to be gathered, as there were none in existence. We conducted a quantitative survey among physicians, using the broad lines of the protocol designed for metropolitan France but adapting it to local particularities to achieve a proper measure of different indicators for all topics under study and in particular medical decisions at end-of-life. We also conducted a qualitative survey in La Réunion to shed light on the context for ageing in the overseas departments and the proportion of home deaths. This comprised a series of semi-directive interviews with decedents’ relatives and two focus groups, providing new information about (a) people’s knowledge of the law and (b) the strengths and weaknesses of end-of-life care at home. Prospects This project is the first to provide scientists, the health authorities and the public with objective data on end-of-life conditions in the French overseas departments. It shows the impact of the overseas departments’ sociodemographic and cultural particularities on end-of-life care and offers health professionals and the authorities some food for thought on end-of-life care policy.