Home death for children dying in six European countries

Aim: Guidelines on pediatric palliative care underline that care at the end of life of chronically ill children should preferably be provided in the child’s home situation. Till present, no European data at population level are available for place of death of children. The aim of this study was to compare proportions of home death for children in six European countries and investigate relation between place of death and sociodemographic and clinical factors. Method: Data were collected from death certificates of all deceased children aged 1-17 in Belgium (BE), the Netherlands (NL), Norway (NO), England (E), Wales (W) (2003) and Italy (IT) (2002). Gender, cause (cancer, natural non-cancer and external) and place of death (home vs. outside home) and sociodemographic factors (socio-economic status (SES), degree of urbanization and number of hospital beds in the area) were included in the analyses. Data were analyzed using frequencies and multivariate logistic regression. Results: A total of 3.187 deaths were included in the analyses, 534 (16,8%) died from cancer. The proportion of home deaths was 19,6% (IT), 20,5% (E), 20,6% (W), 21,0% (NO), 23,8% (BE) and 28,6% (NL). Home death was more likely for children dying from cancer in BE, NL, E and W, for children with high SES in BE, in areas with low number of hospital beds in IT, and for boys in NL. Conclusion: The proportion of home deaths for children differs between studied countries. In most, but not all, countries children dying from cancer had better odds of dying at home than those not dying from cancer. Although acknowledging the influence of culture in the differences, studying care provisions in countries with higher proportions of home deaths, particularly in chronically ill children, can be helpful to identify factors facilitating terminally ill children to die at home. Early involvement of palliative care and equal access to these services can be important in this context. Funding: IWT-Flanders

A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders, Belgium: research protocol

Background: Reliable studies of the incidence and characteristics of medical end-of-life decisions with a certain or possible life shortening effect (ELDs) are indispensable for an evidence-based medical and societal debate on this issue. This article presents the protocol drafted for the 2007 ELD Study in Flanders, Belgium, and outlines how the main aims and challenges of the study (i.e. making reliable incidence estimates of end-of-life decisions, even rare ones, and describing their characteristics; allowing comparability with past ELD studies; guaranteeing strict anonymity given the sensitive nature of the research topic; and attaining a sufficient response rate) are addressed in a post-mortem survey using a representative sample of death certificates. Study design: Reliable incidence estimates are achievable by using large at random samples of death certificates of deceased persons in Flanders (aged one year or older). This entails the cooperation of the appropriate administrative authorities. To further ensure the reliability of the estimates and descriptions, especially of less prevalent end-of-life decisions (e.g. euthanasia), a stratified sample is drawn. A questionnaire is sent out to the certifying physician of each death sampled. The questionnaire, tested thoroughly and avoiding emotionally charged terms is based largely on questions that have been validated in previous national and European ELD studies. Anonymity of both patient and physician is guaranteed through a rigorous procedure, involving a lawyer as intermediary between responding physicians and researchers. To increase response we follow the Total Design Method (TDM) with a maximum of three follow-up mailings. Also, a non-response survey is conducted to gain insight into the reasons for lack of response. Discussion: The protocol of the 2007 ELD Study in Flanders, Belgium, is appropriate for achieving the objectives of the study; as past studies in Belgium, the Netherlands, and other European countries have shown, strictly anonymous and thorough surveys among physicians using a large, stratified, and representative death certificate sample are most suitable in nationwide studies of incidence and characteristics of end-of-life decisions. There are however also some limitations to the study design

Houding van Vlaamse leerlingen uit het secundair onderwijs ten opzichte van euthanasie en andere beslissingen aan het levenseinde bij minderjarigen

Kernwoorden: adolescenten, houding, besluitvorming, euthanasie, patiëntenparticipatie, onthouden van behandeling Achtergrond: De opzet van het onderzoek was na te gaan hoe leerlingen uit het secundair onderwijs staan tegenover de aanvaardbaarheid van verzoeken van minderjarigen om medische beslissingen aan het levenseinde (MBL’s), die een mogelijk levensverkortend effect hebben: niet-behandelbeslissingen, mogelijk levensverkortende pijn- en symptoomcontrole (PSC) en euthanasie. Methode: Een dwarsdoorsnedebevraging (cross-sectionele bevraging) werd uitgevoerd bij leerlingen van het tweede en vierde jaar in 20 secundaire scholen in Vlaanderen. Een anonieme gestructureerde vragenlijst werd gebruikt om de houding van de leerlingen te meten ten opzichte van de aanvaardbaarheid van verzoeken voor euthanasie en andere MBL’s; ten opzichte van het recht om geïnformeerd te worden over een terminale prognose en hun eigen wens hierover geïnformeerd te worden. Resultaten: In totaal deden 1769 leerlingen mee aan het onderzoek. In het geval van een terminale patiënt vond 61% een vraag om euthanasie aanvaardbaar, 60% vond een verzoek om PSC aanvaardbaar en 69% vond een verzoek om een niet-behandelbeslissing aanvaardbaar. Indien het om een niet-terminale patiënt ging, vond 18% een verzoek om euthanasie en 50% een verzoek om PSC aanvaardbaar. De aanvaarding was het grootst bij jongens, deelnemers ouder dan 14 jaar en deelnemers uit het algemeen secundair onderwijs (in vergelijking met deelnemers van het technisch en beroepsonderwijs). Zesenzestig procent vond dat het feit dat de mening van de ouders niet gevraagd was, een dokter ervan zou moeten weerhouden een dodelijk middel toe te dienen. Negentig procent van alle ondervraagden vond dat een minderjarige het recht heeft geïnformeerd te worden over de terminale prognose van een ziekte, terwijl 78% hierover zelf zou willen geïnformeerd worden. Besluit: De houding ten overstaan van MBL’s verschilde naargelang het geval, de kenmerken van de deelnemer en de soort MBL. De onderzochte adolescenten hebben een duidelijke wens om geïnformeerd te worden over terminale prognoses. Dokters en zorgverleners dienen adolescenten op een gepaste manier te betrekken bij de besluitvorming en informatie met betrekking tot de prognose dient te worden aangepast aan de noden en de graad van competentie van de adolescent

Medical end-of-life decisions in children in Flanders, Belgium

Objectives: To estimate the prevalence of end-of-life decisions and to describe their characteristics and the preceding decision-making process in minors in Belgium. Design: Population-based postmortem anonymous physician survey. Setting: Flanders, Belgium. Participants: All physicians signing the death certificates of all patients (N=250) aged 1 to 17 years who died between June 2007 and November 2008 in Flanders, Belgium. Outcome Measures: Prevalence and characteristics of end-of-life decisions and the preceding decisionmaking process. Results: For 165 of the 250 deaths, a physician questionnaire was returned (70.5%). In 36.4%, death was preceded by an end-of-life decision. Drugs were administered to alleviate pain and symptoms with a possible life-shortening effect in 18.2% of all deaths, nontreatment decisions were made in 10.3%, and lethal drugs without the patient’s explicit request were used in 7.9%. No cases of euthanasia, ie, the use of drugs with the explicit intention to hasten death at the patient’s explicit request, were reported. Poor clinical prospects (84.6%) and low quality of life expectations (61.5%) were important reasons for the physicians to engage in end-of-life decisions. Parents were involved in decision making in 85.2% of these decisions, patients in 15.4%. Conclusions: Medical end-of-life decisions are frequent in minors in Flanders, Belgium. Whereas parents were involved in most end-of-life decisions, the patients themselves were involved much less frequently, even when the ending of their lives was intended. At the time of decision making, patients were often comatose or the physicians deemed them incompetent or too young to be involved