There are commonalities in the prevalence of problems across cancer and non-cancer patients, highlighting the need for palliative care to be provided irrespective of diagnosis. The methodological heterogeneity across the studies and the lack of non-cancer studies need to be addressed in future research.

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Context. Advance care planning (ACP) is an important part of patient-centered palliative care. There have been few nationwide studies of ACP, especially in Europe.Objectives. To investigate the prevalence and characteristics of ACP in two European countries and identify the associated factors.Methods. A mortality follow-back study was undertaken in 2007 via representative nationwide Sentinel Networks of general practitioners (GPs) in Belgium and The Netherlands using similar standardized procedures. All GPs reported on each non-suddenly deceased patient in their practice. Our main outcome measure was whether or not ACP, that is, an agreement for medical treatment and/or medical decisions in the last phase of life in the case of the patient losing competence, was present.Results. Among 1072 non-sudden deaths, ACP was done with 34% of patients and most often related to the forgoing of potential life-prolonging treatments in general (24%). In 8% of cases, ACP was made in consultation with the patient and in writing. In 23% of cases, care was planned with the patient's family only. Multivariate analysis revealed that ACP was more often made with patients if they were capable of decision making during the last three days of life (odds ratio [OR] 3.86; 95% confidence interval [CI] 2.4e6.1), received treatment aimed at palliation in the last week (OR 2.57; 95% CI 1.6e4.2), had contact with a GP in the last week (OR 2.71; 95% CI 1.7e4.1), died of cancer (OR 1.46; 95% CI 1.1e2.0), or died at home (OR 2.16; 95% CI 1.5e3.0).

BackgroundAlthough 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.MethodsNationwide 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.ResultsA 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.ConclusionVia 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.