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Objective: To examine trends in end-of-life communication with people with cancer in general practice., Methods: Mortality follow-back survey among general practitioners (GPs) in representative epidemiological surveillance networks in Belgium (BE), the Netherlands (NL) and Spain (ES) in 2009-2010 (ES: 2010-2011) and 2013-2014. Using a standardised form, GPs registered all deceased adult patients in their practice and reported for five end-of-life care topics whether they had been discussed with the patient. Non-sudden cancer deaths were included (n=2306; BE: 1233; NL: 729; ES: 344)., Results: A statistically significant increase was found between 2009/2010 and 2014 in the prevalence of communication about diagnosis (from 84% to 94%) and options for end-of-life care (from 73% to 90%) in BE, and in GPs' awareness of patients' preferences for medical treatment and a proxy decision-maker in BE (from 41% and 20% up to 53% and 28%) and the NL (from 62% and 32% up to 70% and 52%). Communication about options for end-of-life care and psychosocial problems decreased in the NL (from 88% and 91% down to 73%) and ES (from 76% and 77% down to 26% and 39%)., Conclusion: Considerable change in GP-patient communication seems possible in a relatively short time span, but communication cannot be assumed to increase over time. Increasing specialisation of care and task differentiation may lead to new roles in communication for healthcare providers in primary and secondary care. Improved information sharing between GPs and other healthcare providers may be necessary to ensure that patients have the chance to discuss important end-of-life topics., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Measuring the quality of palliative care in a systematic way using quality indicators can illuminate differences between patient groups., Aim: To investigate differences in the quality of palliative care in primary care between people who died of cancer and people who died of organ failure., Design: Mortality follow-back survey among general practitioners in Belgium, the Netherlands, and Spain (2013-2014), and Italy (2013-2015). A standardized registration form was used to construct quality indicators regarding regular pain measurement, acceptance of the approaching end of life, communication about disease-related topics with patient and next-of-kin; repeated multidisciplinary consultations; involvement of specialized palliative care; place of death; and bereavement counseling., Setting/participants: Patients (18+) who died non-suddenly of cancer, cardiovascular disease, or respiratory disease ( n = 2360)., Results: In all countries, people who died of cancer scored higher on the quality indicators than people who died of organ failure, particularly with regard to pain measurement (between 17 and 35 percentage-point difference in the different countries), the involvement of specialized palliative care (between 20 and 54 percentage points), and regular multidisciplinary meetings (between 12 and 24 percentage points). The differences between the patient groups varied by country, with Belgium showing most group differences (eight out of nine indicators) and Spain the fewest (two out of nine indicators)., Conclusion: People who died of organ failure are at risk of receiving lower quality palliative care than people who died of cancer, but the differences vary per country. Initiatives to improve palliative care should have different priorities depending on the healthcare and cultural context.

Background: General practitioners (GPs) use gut feelings to diagnose cancer in an early stage, but little is known about its impact., Method: Prospective cohort study of patients in 44 general practices throughout the Netherlands, from January 2010 until December 2013. GPs completed a questionnaire regarding gut feelings, patient and GP characteristics, if they noticed a cancer-related gut feeling during patient consultation. Follow-up questionnaires were sent 3 months later requesting information about the patient's diagnosis. χ(2), univariate and multivariate logistic regression and multilevel analyses were performed., Results: A gut feeling (N=366) is most often triggered by weight loss (24%, N=85) and rare GP visits (22%, N=76), but all triggers were not predictive of cancer in a multivariate analysis. Most GPs (95%) acted immediately on the gut feeling, either referring to a specialist or by performing additional medical tests. The average positive predictive value of cancer-related gut feeling was 35%, and it increased with 2% for every year a patient becomes older, and with 3% for every year a GP becomes older., Conclusions: GP's gut feeling for cancer proves to be a useful tool in diagnosing cancer and its relative high predicting value increases if the GP is older or more experienced and when the patient is older. How can younger GPs be trained to increase the predictive value of their gut feeling?, (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Background: The number of cancer survivors is steadily increasing and these patients often experience long-lasting health problems. To make care for cancer survivors sustainable for the future, it would be relevant to put the effects of cancer in this phase into perspective. Therefore, the authors compared health-related quality of life (HRQOL) and health care use among cancer survivors with that of patients with chronic diseases., Methods: Patients diagnosed at age >18 years with a cancer with a 5-year survival rate > 20% and no distant metastases at the time of diagnosis and patients aged >18 years with physician-diagnosed somatic chronic diseases without cancer were sent a questionnaire. HRQOL was measured with the RAND-36, a measure of HRQOL. Self-reported health care use was measured for general practitioner care, specialist care, rehabilitative care, physical therapy, ambulatory mental health care, and occupational health care., Results: A total of 601 cancer survivors and 1052 patients with chronic diseases without cancer were included in the current study. Multimorbidity was observed in 63% of the cancer survivors and 61% of the patients with chronic diseases. The HRQOL of the cancer survivors was significantly better than that of patients with chronic diseases after adjustment for age and sex. For the mental functioning subscale, no significant differences were found between the 2 groups. Cancer survivors were found to be less likely to have visited a general practitioner or cardiologist compared with patients with chronic diseases., Conclusions: When considering physical HRQOL and health care use, cancer survivors appear to fare better than the average patient with chronic diseases. No difference in mental functioning was observed in the current study., (© 2016 American Cancer Society.)

Background: Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse., Objectives: To compare cancer patients with and without additional support from a case manager on: 1) the patients' general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes., Methods: This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013., Results: The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care., Conclusions: Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is 'only' advisory and he or she does not provide hands-on care or prescribe medication.

Background: This 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., Methods: General 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., Results: Of 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., Conclusion: Although 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.

Background: Repeated and long hospitalizations of cancer patients at the end of life have been suggested as indicators of low quality of palliative care. Comparing the care delivered between different countries with the help of these quality indicators may identify opportunities to improve practice. Our objective is twofold: firstly, to describe the scores for the existing quality indicators "the percentage of time spent in hospital" and "the proportion of adult patients with more than one hospitalization in the last 30 days of life" in populations of cancer patients in four European countries and to see whether these countries met previously defined performance standards; secondly, to assess whether these scores are related to receiving palliative care from their GP., Methods: A mortality follow-back study was conducted, based on data recorded by representative GP networks for samples of cancer patients living at home who died non-suddenly in Belgium (n = 500), the Netherlands (n = 310), Italy (n = 764), and Spain (n = 224)., Results: The quality indicator score for "the percentage of time spent in hospital" in the last month of life was 14.1% in the Netherlands, 17.7% in Spain, 22.2% in Italy, and 24.6% in Belgium, which means that none of the countries met the performance standard of <10%. For the "proportion of patients with more than one hospitalization in the last 30 days of life", two countries met the performance standard of <4%: the Netherlands (0.6%) and Italy (3.1%). Spain had a score of 4.0% and Belgium scored 5.4%. When patients received palliative care from their GP, significantly less time was spent in hospital in the last month and fewer hospitalizations took place., Conclusions: European countries differ regarding the frequency and duration of hospitalizations of cancer patients in the last month of life. This reflects country-specific differences in the organization of palliative care and highlights the important role of the GP in palliative care provision.

Aim: This study aimed to explore clinical and care-related factors associated with fulfilling cancer patients' preference for home death across four countries: Belgium (BE), The Netherlands (NL), Italy (IT), and Spain (ES)., Methods: A mortality follow-back study was undertaken from 2009 to 2011 via representative networks of general practitioners (GPs). The study included all patients aged 18 and over who had died of cancer and whose home death preference and place of death were known by the GP. Factors associated with meeting home death preference were tested using multivariable logistic regressions., Results: Among 2,048 deceased patients, preferred and actual place of death was known in 42.6 percent of cases. Home death preference met ranged from 65.5 to 90.9 percent. Country-specific factors included older age in BE, and decision-making capacity and being female in the NL. GPs' provision of palliative care was positively associated with meeting home death preference. Odds ratios (ORs) were: BE: 9.9 (95 percent confidence interval [CI] 3.7-26.6); NL: 9.7 (2.4-39.9); and IT: 2.6 (1.2-5.5). ORs for Spain are not shown because a multivariate model was not performed., Conclusion: Those who develop policy to facilitate home death need to examine available resources for primary end-of-life care.

Background: Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care., Methods: Cross-national retrospective study. Over two years (2009-2010), GPs belonging to representative epidemiological surveillance networks in Belgium, the Netherlands, Italy, and Spain registered weekly all deaths of patients (≥ 18 years) in their practices and the care they received in the last three months of life using a standardized form. Sudden deaths were excluded., Results: We studied 4,466 deaths. GPs perceived to have delivered palliative care to 50% of patients in Belgium, 55% in Italy, 62% in the Netherlands, and 65% in Spain (p<.001). Palliative care specialists attended to 29% of patients in the Netherlands, 39% in Italy, 45% in Spain, and 47% in Belgium (p<.001). Specialist palliative care lasted a median (inter-quartile range) of 15 (23) days in Belgium to 30 (70) days in Italy (p<.001). Cancer patients were more likely than non-cancer patients to receive palliative care in all countries as were younger patients in Italy and Spain with regard to specialist palliative care., Conclusions: Although palliative care is established in the countries studied, there are considerable differences in its provision. Two potentially underserved groups emerge non-cancer patients in all countries and older people in Italy and Spain. Future research should examine how differences in palliative care use relate to both patient characteristics and existing national health care policies.

Background: General Practitioners (GPs) are at the first level of contact in many European healthcare systems and they supposedly have a role in supporting cancer patients in achieving their desired place of death. A four-country (Belgium, the Netherlands, Italy and Spain) study was carried out exploring current practices., Patients and Methods: EURO SENTI-MELC adopted a retrospective study design and data for this study were collected in 2010 through representative GPs' networks in four countries. In the current study all non-sudden cancer deaths were included with weekly GP registrations., Results: The main study sample included 930 deceased cancer patients: preference for place of death was known by GPs for only 377. GP awareness on the preferred place of death varied across countries, 27% in Italy, 36% in Spain, 45% in Belgium and 72% in the Netherlands (p<0.01). The general level of preferences met was high, from 68% (Italy) to 92% (Spain)., Conclusions: Despite the importance of being able to die in a preferred location, GPs were often unaware about patient preferences, especially in Italy and Spain. If GPs were informed, the preference was often met in all countries, indicating room for improvement in end-of-life care., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Background: Little is known about treatment aims during the last 3 months of life., Aim: To investigate important treatment aims in the last 3 months of patients' lives in cases of non-sudden death., Design and Setting: Mortality follow-back study in The Netherlands., Method: Data were collected retrospectively in 2009 within the representative Sentinel Network of GPs in The Netherlands. GPs completed a standardised registration form., Results: Data for 279 patients were studied. Of these, 55% died of cancer and 45% of another disease. Treatment was aimed at palliation for 73% of the patients in months 2 and 3 before death, and for 95% of the patients in the last week of life. Seven per cent received treatment aimed at cure in the last week of life. In a minority of patients, cure/life prolongation and palliation were simultaneously important treatment aims. In the last week of life and in the 2-4 weeks before death, cure was more frequently reported as an important treatment aim in patients with a non-cancer disease than in patients with cancer. In the 2-4 weeks before death, palliation was an important treatment aim for a larger proportion of patients with cancer than patients with other diseases., Conclusion: Registration by GPs show that, in the last weeks and days of life, cure was more frequently reported as an important treatment aim in patients with a non-cancer disease than in patients with cancer. For a small number of patients, palliation and cure/life prolongation were simultaneously important treatment aims.