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

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). 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.

Older people dying with dementia: a nationwide study.

BACKGROUND: Large-scale nationwide data describing the end-of-life characteristics of older people with dementia are lacking. This paper describes the dying process and end-of-life care provided to elderly people with mild or severe dementia in Belgium. It compares with elderly people dying without dementia. METHODS: A nationwide retrospective mortality study was conducted, via representative network of general practitioners (GPs) in 2008 in Belgium, with weekly registration of all deaths (aged ≥ 65) using a standardized form. GPs reported on diagnosis and severity of dementia, aspects of end-of-life care and communication, and on the last week of life in terms of symptoms that caused distress as judged by the GP, and the patients' physical and cognitive abilities. RESULTS: Thirty-one percent of our sample (1,108 deaths) had dementia (43% mildly, 57% severely). Of those, 26% died suddenly, 59% in care home, and 74% received palliative treatment, versus 37%, 19%, and 55% in people without dementia. GP-patient conversations were less frequent among those with (45%) than those without (73%) dementia, and 11% of both groups had a proxy decision-maker. During the last week of life, physical and psychological distress was common in both groups. Of older people with dementia, 83% were incapable of decision-making and 83% were bedridden; both significantly higher percentages than found in the group without dementia (24% and 52%). CONCLUSIONS: Several areas of end-of-life care provision could be improved. Early communication and exploration of wishes and appointment of proxy decision-makers are important components of an early palliative care approach which appears to be initiated too infrequently.

Physician reports of medication use with explicit intention of hastening the end of life in the absence of explicit patient request in general practice in Belgium.

BACKGROUND: Although the incidence of the use of life-ending drugs without explicit patient request has been estimated in several studies, in-depth empirical research on this controversial practice is nonexistent. Based on face-to-face interviews with the clinicians involved in cases where patients died following such a decision in general practice in Belgium, we investigated the clinical characteristics of the patients, the decision-making process, and the way the practice was conducted. METHODS: Mortality follow-back study in 2005-2006 using the nationwide Sentinel Network of General Practitioners, a surveillance instrument representative of all GPs in Belgium. Standardised face-to-face interviews were conducted with all GPs who reported a non-sudden death in their practice, at home or in a care home, which was preceded by the use of a drug prescribed, supplied or administered by a physician without an explicit patient request. RESULTS: Of the 2690 deaths registered by the GPs, 17 were eligible to be included in the study. Thirteen interviews were conducted. GPs indicated that at the time of the decision all patients were without prospect of improvement, with persistent and unbearable suffering to a (very) high degree in nine cases. Twelve patients were judged to lack the competence to make decisions. GPs were unaware of their patient's end-of-life wishes in nine cases, but always discussed the practice with other caregivers and/or the patient's relatives. All but one patient received opioids to hasten death. All GPs believed that end-of-life quality had been "improved considerably". CONCLUSIONS: The practice of using life-ending drugs without explicit patient request in general practice in Belgium mainly involves non-competent patients experiencing persistent and unbearable suffering whose end-of-life wishes can no longer be ascertained. GPs do not act as isolated decision-makers and they believe they act in the best interests of the patient. Advance care planning could help to inform GPs about patients' wishes prior to their loss of competence.

Dealing with requests for euthanasia: interview study among general practitioners in Belgium.

CONTEXT: In many countries, physicians are confronted with requests for euthanasia. Notwithstanding that euthanasia is legally permitted in Belgium, it remains the subject of intense debate. OBJECTIVES: To gather in-depth empirical data on how general practitioners (GPs) deal with these requests in Belgium. METHODS: Mortality follow-back study in 2005-2006 via the nationwide Sentinel Network of General Practitioners. Standardized face-to-face interviews were conducted with GPs for all the reported patients who did not die suddenly or totally unexpectedly at home, as judged by the GP. RESULTS: We conducted 205 interviews. Of these, 27 patients had at some point expressed a wish to receive a drug administered by a physician with the explicit intention to end life, that is, euthanasia. Thirteen of these formulated their requests explicitly and repeatedly, according to their GP. Compared with patients who expressed a wish but not an explicit/repeated request for euthanasia, those patients' requests were more often documented (8 of 13 vs. 2 of 14; P=0.01), and reiterated until their final days of life (6 of 13 vs. 0 of 14; P=0.02). Five patients received euthanasia. For the other 22 patients, GPs gave different reasons for not acceding to the request, often related to criteria stipulated in the Belgian law on euthanasia, and sometimes related to personal reasons. CONCLUSION: It is not uncommon for patients to ask their GP for euthanasia, although explicit requests remain relatively rare. Requests tend to vary widely in form and content, and far more are expressed than complied with. For many GPs, the Belgian law on euthanasia serves as a guiding principle in this decision-making process, although in a minority of the cases, a GP's personal opinion toward euthanasia seems to be decisive.

Is individual educational level related to end-of-life care use? Results from a nationwide retrospective cohort study in Belgium.

BACKGROUND: Educational level has repeatedly been identified as an important determinant of access to health care, but little is known about its influence on end-of-life care use. OBJECTIVES: To examine the relationship between individual educational attainment and end-of-life care use and to assess the importance of individual educational attainment in explaining differential end-of-life care use. RESEARCH DESIGN: A retrospective cohort study via a nationwide sentinel network of general practitioners (GPs; SENTI-MELC Study) provided data on end-of-life care utilization. Multilevel analysis was used to model the association between educational level and health care use, adjusting for individual and contextual confounders based upon Andersen's behavioral model of health services use. SUBJECTS: A Belgian nationwide representative sample of people who died not suddenly in 2005-2007. RESULTS: In comparison to their less educated counterparts, higher educated people equally often had a palliative treatment goal but more often used multidisciplinary palliative care services (odds ratios [OR] for lower secondary education 1.28 [1.04-1.59] and for higher [secondary] education: 1.31 [1.02-1.68]), moved between care settings more frequently (OR: 1.68 [1.13-2.48] for lower secondary education and 1.51 [0.93-2.48] for higher [secondary] education) and had more contacts with the GP in the final 3 months of life. CONCLUSIONS: Less well-educated people appear to be disadvantaged in terms of access to specialist palliative care services, and GP contacts at the end of life, suggesting a need for empowerment of less well-educated terminally ill people regarding specialist palliative and general end-of-life care use.

Use of palliative care services and general practitioner visits at the end of life in The Netherlands and Belgium.

CONTEXT: At the end of life, some personalized and specialized care is required. The way that general practitioner (GP) visits and palliative care services at the end of life are organized in different countries may impact the frequency of care provision. However, nationwide data on the prevalence of these interventions and comparisons among countries are scarce. OBJECTIVES: To compare the frequency of GP visits and use of palliative care services at the end of life in two European countries and identify the associated factors. METHODS: In 2007, two mortality follow-back studies were conducted simultaneously in The Netherlands and Belgium, using existing Sentinel GP networks and similar standardized procedures. Within the one-year period, all registered patients who died at home or in a care home were selected. RESULTS: From the data of 543 registered patients, GP visits were more frequent at the end of life in The Netherlands than in Belgium: the mean number of GP visits in the last week of life was 5.1 vs. 3.2 (home) and 4.4 vs. 2.3 (care home). Conversely, palliative care services in the last three months of life were used more frequently in Belgium than in The Netherlands: 78% vs. 41% (home) and 39% vs. 5% (care homes). The differences between countries remained consistent despite correcting for possible confounders. Having more frequent GP visits at home was associated with cancer-related deaths both in The Netherlands and Belgium. CONCLUSION: Independent of the differences in patient populations (at home and care home) between countries, there are more frequent GP visits at the end of life in The Netherlands and greater use of palliative care services in Belgium.

Advance care planning in Belgium and The Netherlands: a nationwide retrospective study via sentinel networks of general practitioners.

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] 2.4-6.1), received treatment aimed at palliation in the last week (OR 2.57; 95% CI 1.6-4.2), had contact with a GP in the last week (OR 2.71; 95% CI 1.7-4.1), died of cancer (OR 1.46; 95% CI 1.1-2.0), or died at home (OR 2.16; 95% CI 1.5-3.0). CONCLUSION: In these countries, ACP is done with approximately one-third of the studied terminally ill patient population. Most agreements are made only verbally, and care also is often planned with family only. ACP relates strongly both to patient factors and to health care measures performed at the very end of life.

End-of-life care and circumstances of death in patients dying as a result of cancer in Belgium and the Netherlands: a retrospective comparative study.

PURPOSE: To examine and compare end-of-life care in patients with cancer dying in Belgium and the Netherlands. PATIENTS AND METHODS: A mortality follow-back study was undertaken in 2008 via representative nationwide sentinel networks of general practitioners (GPs) in Belgium and the Netherlands. By using similar standardized procedures, GPs reported on aspects of end-of-life care and the circumstances of nonsudden death of patients with cancer in their practice. RESULTS: Of the 422 reported patients with cancer, most resided at home during the last year of life (Belgium, 91%; the Netherlands, 95%). Death occurred at home in 34% (Belgium) and 61% (the Netherlands) and in the hospital in 29% (Belgium) and 19% (the Netherlands). In the last month of life, end-of-life issues were more often discussed in the Netherlands (88%) than in Belgium (68%). In both countries, physical problems were discussed most often (Belgium, 49%; the Netherlands, 78%) and spiritual issues least often (Belgium, 20%; the Netherlands, 32%). Certain end-of-life treatment preferences were known for 43% (Belgium) and 67% (the Netherlands) of patients. In the last week of life, treatment was most often focused on palliation (Belgium, 94%; the Netherlands, 91%). Physical distress was reported in 84% (Belgium) and 76% (the Netherlands) of patients and psychological distress in 59% and 36%. Most distressing was lack of energy (Belgium, 73%; the Netherlands, 71%) and lack of appetite (Belgium, 61%; the Netherlands, 53%). Two thirds of patients were bedridden (Belgium, 67%; the Netherlands, 69%). CONCLUSION: Although place of death and communication about end-of-life issues differ substantially, a palliative treatment goal is adopted for the vast majority of patients in both countries. However, GPs reported that the majority of patients experienced symptom distress at the end of life, which suggests important challenges remain for improving end-of-life care.

GPs' awareness of patients' preference for place of death.

BACKGROUND: Being able to die in one's place of choice is an indicator of the quality of end-of-life care. GPs may play a key role in exploring and honouring patients' preferences for place of death. AIM: To examine how often GPs are informed about patients' preferred place of death, by whom and for which patients, and to study the expressed preferred place of death and how often patients die at their preferred place. DESIGN OF STUDY: One-year nationwide mortality retrospective study. SETTING: Sentinel Network of GPs in Belgium, 2006. METHOD: GPs' weekly registration of all deaths (patients aged =1 year). RESULTS: A total of 798 non-sudden deaths were reported. GPs were informed of patients' preferred place of death in 46% of cases. GPs obtained this information directly from patients in 63%. GP awareness was positively associated with patients not being hospitalised in the last 3 months of life (odds ratio [OR] = 3.9; 95% confidence interval [CI] = 2.8 to 5.6), involvement of informal caregivers (OR = 3.3; 95% CI = 1.8 to 6.1), use of a multidisciplinary palliative care team (OR = 2.5; 95% CI = 1.8 to 3.5), and with presence of more than seven contacts between GP and patient or family in the last 3 months of life (OR = 3.0; 95% CI = 2.2 to 4.3). In instances where GPs were informed, more than half of patients (58%) preferred to die at home. Overall, 80% of patients died at their preferred place. CONCLUSION: GPs are often unaware of their patients' preference for place of death. However, if GPs are informed, patients often die at their preferred location. Several healthcare characteristics might contribute to this and to a higher level of GP awareness.