BackgroundDying at home and dying at the preferred place of death are advocated to be desirable outcomes of palliative care. More insight is needed in their usefulness as quality indicators. Our objective is to describe whether “the percentage of patients dying at home” and “the percentage of patients who died in their place of preference” are feasible and informative quality indicators.Methods and FindingsA mortality follow-back study was conducted, based on data recorded by representative GP networks regarding home-dwelling patients who died non-suddenly in Belgium (n = 1036), the Netherlands (n = 512), Italy (n = 1639) or Spain (n = 565). “The percentage of patients dying at home” ranged between 35.3% (Belgium) and 50.6% (the Netherlands) in the four countries, while “the percentage of patients dying at their preferred place of death” ranged between 67.8% (Italy) and 86.0% (Spain). Both indicators were strongly associated with palliative care provision by the GP (odds ratios of 1.55–13.23 and 2.30–6.63, respectively). The quality indicator concerning the preferred place of death offers a broader view than the indicator concerning home deaths, as it takes into account all preferences met in all locations. However, GPs did not know the preferences for place of death in 39.6% (the Netherlands) to 70.3% (Italy), whereas the actual place of death was known in almost all cases.ConclusionGPs know their patients’ actual place of death, making the percentage of home deaths a feasible indicator for collection by GPs. However, patients’ preferred place of death was often unknown to the GP. We therefore recommend using information from relatives as long as information from GPs on the preferred place of death is lacking. Timely communication about the place where patients want to be cared for at the end of life remains a challenge for GPs.

End-of-life transitions between health care settings are common across EU countries, in particular late hospitalizations for people residing at home. Frequency, type and reasons for terminal hospitalizations vary between countries.

BackgroundThis is an international study across four European countries (Belgium[BE], the Netherlands[NL], Italy[IT] and Spain[ES]) between 2009 and 2011, describing and comparing care and care setting transitions provided in the last three months of life of cancer patients, using representative GP networks.MethodsGeneral practitioners (GPs) of representative networks in each country reported weekly all non-sudden cancer deaths (+18y) within their practice. GPs reported medical end-of-life care, communication and circumstances of dying on a standardised questionnaire. Multivariate logistic regressions (BE as a reference category) were conducted to compare countries.ResultsOf 2,037 identified patients from four countries, four out of five lived at home or with family in their last year of life. Over 50% of patients had at least one transition in care settings in the last three months of life; one third of patients in BE, IT and ES had a last week hospital admission and died there. In the last week of life, a treatment goal was adopted for 80-95% of those having palliation/comfort as their treatment goal. Cross-country differences in end-of-life care provision included GPs in NL being more involved in palliative care (67%) than in other countries (35%-49%) (OR 1.9) and end-of-life topics less often discussed in IT or ES. Preference for place of death was less often expressed in IT and ES (32-34%) than in BE and NL (49-74%). Of all patients, 88-98% were estimated to have distress from at least one physical symptom in the final week of life.ConclusionAlthough palliative care was the main treatment goal for most cancer patients at the end of life in all four countries, frequent late hospital admissions and the symptom burden experienced in the last week of life indicates that further integration of palliative care into oncology care is required in many countries.

BackgroundThere is a paucity of cross-national population-based research on hospitalisations of people at the end of life. We aimed to compare, in four European countries, the frequency, time, length of and factors associated with hospitalisations in the last 3 months of life.MethodsPopulation-based mortality follow-back study via Sentinel Networks of general practitioners (GPs) in Belgium, the Netherlands, Italy and Spain. Using a standardised form, GPs recorded the care in the last 3 months of life of every deceased practice patient (≥18 years; 1 January 2009 to 31 December 2011). Sudden deaths were excluded.ResultsWe studied 4791 deaths that GPs described as non-sudden (66% of all registered deaths). Between 49% (the Netherlands) and 56% (Belgium) of patients were hospitalised at least once in the last 3 months of life. Readmissions were less frequent in the Netherlands (8%) than in the other countries (15–20%, p<0.001). Chances of being hospitalised increased over the last 10 days of life across countries but remained lowest in the Netherlands (Belgium: 21–37%, the Netherlands: 15–29%, Italy: 16–37%, Spain: 14–31%). Hospitalisations in the last week of life were more likely if patients resided at home rather than in a care home (ORs and 95% CIs Belgium: 1.94 (1.28 to 2.94); the Netherlands: 2.61 (1.10 to 6.18); Spain: 4.72 (1.64 to 13.57); non-significant in Italy) and less likely if the GP knew the patient's preferred place of death (ORs and 95% CIs Belgium: 0.52 (0.36 to 0.74); the Netherlands: 0.48 (0.25 to 0.91); Spain: 0.24 (0.13 to 0.44), non-significant in Italy).ConclusionsThe use of hospitals at the end-of-life increased over the last weeks of life of patients in all countries studied, but remained lowest in the Netherlands, as did the rate of readmissions. This may be due to gatekeeping by GPs who are trained and supported in preventing hospital readmissions at the end of life.

Backgroundmeasuring the quality of primary palliative care for older people with dementia in different countries is important to identify areas where improvements can be made.Objectiveusing quality indicators (QIs), we systematically investigated the overall quality of primary palliative care for older people with dementia in three different countries.Design/settinga mortality follow-back survey through nation- and region-wide representative Sentinel Networks of General Practitioners (GPs) in Belgium, Italy and Spain. GPs registered all patient deaths in their practice. We applied a set of nine QIs developed through literature review and expert consensus.Subjectspatients aged 65 or older, who died non-suddenly with mild or severe dementia as judged by GPs (n = 874).Resultsfindings showed significantly different QI scores between Belgium and Italy for regular pain measurement (mild dementia: BE = 44%, IT = 12%, SP = 50% | severe dementia: BE = 41%, IT = 9%, SP = 47%), acceptance of approaching death (mild: BE = 59%, IT = 48%, SP = 33% | severe: BE = 41%, IT = 21%, SP = 20%), patient–GP communication about illness (mild: BE = 42%, IT = 6%, SP = 20%) and involvement of specialised palliative services (mild: BE = 60%, IT = 20%, SP = 77%). The scores in Belgium differed from Italy and Spain for patient–GP communication about medical treatments (mild: BE = 34%, IT = 12%, SP = 4%) and repeated multidisciplinary consultations (mild: BE = 39%, IT = 5%, SP = 8% | severe: BE = 36%, IT = 10%, SP = 8%). The scores for relative-GP communication, patient death outside hospitals and bereavement counselling did not differ between countries.Conclusionwhile the countries studied differed considerably in the overall quality of primary palliative care, they have similarities in room for improvement, in particular, pain measurement and prevention of avoidable hospitalisations.