Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe

Lieve Van den Block, Bregje Onwuteaka-Philipsen, Koen Meeussen, Gé Donker, Francesco Giusti, Guido Miccinesi, Viviane Van Casteren, Tomas Vega Alonso, Oscar Zurriaga, Luc Deliens

BACKGROUND: Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology. METHODS: Nationwide representative Networks of General Practitioners (GPs) -- ie epidemiological surveillance systems representative of all GPs in a country or large region of a country -- in Belgium, the Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009--2010).All GPs were asked to identify patients who had died "non-suddenly". The last three months of these patients' lives was surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality. RESULTS: A total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in the Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries. CONCLUSION: Via the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries, measuring across setting and diseases. The data can serve as baseline measurement to compare and monitor end-of-life care over time. The use of representative GP networks for end-of-life care monitoring has huge potential in Europe where several of these networks are operational.