OLDER DUTCH PEOPLE’S SELF-REPORTED ADVANCE EUTHANASIA DIRECTIVE COMPLETION BEFORE AND AFTER THE ENACTMENT OF THE EUTHANASIA LAW: A TIME TREND STUDY (1998–2011) (original) (raw)
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BMC Public Health, 2012
Background: A growing body of scientific research is suggesting that end-of-life care and decision making may differ between age groups and that elderly patients may be the most vulnerable to exclusion of due care at the end of life. This study investigates age-related disparities in the rate of end-of-life decisions with a possible or certain life shortening effect (ELDs) and in the preceding decision making process in Flanders, Belgium in 2007, where euthanasia was legalised in 2002. Comparing with data from an identical survey in 1998 we also study the plausibility of the 'slippery slope' hypothesis which predicts a rise in the rate of administration of life ending drugs without patient request, especially among elderly patients, in countries where euthanasia is legal. Method: We performed a post-mortem survey among physicians certifying a large representative sample (n = 6927) of death certificates in 2007, identical to a 1998 survey. Response rate was 58.4%. Results: While the rates of non-treatment decisions (NTD) and administration of life ending drugs without explicit request (LAWER) did not differ between age groups, the use of intensified alleviation of pain and symptoms (APS) and euthanasia/assisted suicide (EAS), as well as the proportion of euthanasia requests granted, was bivariately and negatively associated with patient age. Multivariate analysis showed no significant effects of age on ELD rates. Older patients were less often included in decision making for APS and more often deemed lacking in capacity than were younger patients. Comparison with 1998 showed a decrease in the rate of LAWER in all age groups except in the 80+ age group where the rate was stagnant. Conclusion: Age is not a determining factor in the rate of end-of-life decisions, but is in decision making as patient inclusion rates decrease with old age. Our results suggest there is a need to focus advance care planning initiatives on elderly patients. The slippery slope hypothesis cannot be confirmed either in general or among older people, as since the euthanasia law fewer LAWER cases were found.
Frequency and determinants of advance directives concerning end-of-life care in The Netherlands
Social science & medicine (1982), 2006
In the USA, the use of advance directives (ADs) has been studied extensively, in order to identify opportunities to increase their use. We investigated the prevalence of ADs and the factors associated with formulation of an AD in The Netherlands, using samples of three groups: the general population up to 60 years of age, the general population over 60 years of age, and the relatives of patients who died after euthanasia or assisted suicide. The associated factors were grouped into three components: predisposing factors (e.g. age, gender), enabling factors (e.g. education) and need factors (e.g. health-related factors). We found that living wills had been formulated by 3% of younger people, 10% of older people, and 23% of the relatives of a person who died after euthanasia or assisted suicide. Most living wills concerned a request for euthanasia. In all groups, 26-29% had authorized someone to make decisions if they were no longer able to do so themselves. Talking to a physician abo...
Euthanasia and other end-of-life decisions: a mortality follow-back study in Belgium
BMC Public Health, 2009
Background This study compares prevalence and types of medical end-of-life decisions between the Dutch-speaking and French-speaking communities of Belgium. This is the first nationwide study that can make these comparisons and the first measurement after implementation of the euthanasia law (2002). Methods We performed a mortality follow-back study in 2005–2006. Data were collected via the nationwide Sentinel Network of General Practitioners, an epidemiological surveillance system representative of all Belgian GPs. Weekly, all GPs reported the medical end-of-life decisions among all non-sudden deaths of patients in their practice. We compared the northern Dutch-speaking (60%) and southern French-speaking communities (40%) controlling for population differences. Results We analysed 1690 non-sudden deaths. An end-of-life decision with possible life-shortening effect was made in 50% of patients in the Dutch-speaking community and 41% of patients in the French-speaking community (OR 1.4; 95%CI, 1.2 to 1.8). Continuous deep sedation until death occurred in 8% and 15% respectively (OR 0.5; 95%CI, 0.4 to 0.7). Community differences regarding the prevalence of euthanasia or physician-assisted suicide were not significant. Community differences were more present among home/care home than among hospital deaths: non-treatment decisions with explicit life-shortening intention were made more often in the Dutch-speaking than in the French-speaking community settings (OR 2.2; 95%CI, 1.2 to 3.9); while continuous deep sedation occurred less often in the Dutch-speaking community settings (OR 0.5; 95%CI, 0.3 to 0.9). Conclusion Even though legal and general healthcare systems are the same for the whole country, there are considerable variations between the communities in type and prevalence of certain end-of-life decisions, even after controlling for population differences.
BMC Public Health, 2008
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.
BMC Public Health, 2013
Background: Educational attainment has been shown to influence access to and quality of health care. However, the influence of educational attainment on decision-making at the end of life with possible or certain life-shortening effect (ELDs ie intensified pain and symptom alleviation, non-treatment decisions, euthanasia/physician-assisted suicide, and life-ending acts without explicit request) is scarcely studied. This paper examines differences between educational groups pertaining to prevalence of ELDs, the decision-making process and end-of-life treatment characteristics. Method: We performed a retrospective survey among physicians certifying a large representative sample of Belgian deaths in 2007. Differences between educational groups were adjusted for relevant confounders (age, sex, cause of death and marital status). Results: Intensified pain and symptom alleviation and non-treatment decisions are more likely to occur in higher educated than in lower educated patients. These decisions were less likely to be discussed with either patient or family, or with colleague physicians, in lower educated patients. A positive association between education and prevalence of euthanasia/assisted suicide (acts as well as requests) disappeared when adjusting for cause of death. No differences between educational groups were found in the treatment goal in the last week, but higher educated patients were more likely to receive opioids in the last day of life. Conclusion: There are some important differences and possible inequities between educational groups in end-of-life decision-making in Belgium. Future research should investigate whether the found differences reflect differences in knowledge of and adherence to patient preferences, and indicate a discrepancy in quality of the end of life.
Journal of Medical Ethics, 2013
Background The Dutch euthanasia law regulates physician assistance in dying for patients who are suffering unbearably from a medical condition. We studied the attitudes of the Dutch population to assistance in dying for older persons who have a wish to die without the presence of a serious medical condition. Methods A cross-sectional survey was conducted among a random sample of the Dutch public (response rate 78%, n=1960), using statements and vignettes about attitudes to assistance in dying for older persons who are tired of living. Results A minority of 26% agreed with a vignette in which a physician warrants the request for physicianassisted suicide of an older person who is tired of living without having a serious medical condition. Furthermore, 21% agreed with the statement 'In my opinion euthanasia should be allowed for persons who are tired of living without having a serious disease'. People supporting euthanasia for older persons who are tired of living were more likely than opponents to be highly educated (OR 1.6; 95% CI 1.1 to 2.3), to be nonreligious (OR 1.7; 95% CI 1.3 to 2.3), to have little trust in physicians (OR 1.6; 95% CI 1.2 to 2.2), and to prefer to make their own healthcare decisions (OR 1.7; 95% CI 1.3 to 2.3). Conclusions Although it is lower than the level of support for assistance in dying for patients whose suffering is rooted in a serious medical condition, our finding that a substantial minority of the general public supports physician assistance in dying for older people who are tired of living implies that this topic may need to be taken seriously in the debate about end-of-life decision-making.
Sozial-und Praventivmedizin, 2006
Objectives: To determine the direction and magnitude of participation bias in end-of-life research. Methods: Within the framework of a European survey on medical end-of-life decisions, a non-response study was conducted among physicians in Denmark, the Netherlands, Sweden and Switzerland. People were asked about their attitudes and experiences in the area of medial end-of-life decision. The response rates ranged from 12.8% (Netherlands) to 39.4% (Switzerland). The responders (n = 5 403) and the non-responders (n = 866) were compared regarding socio-demographic characteristics, experiences with terminal patients and agreement with attitudes towards “end-of-life decisions”. The reasons for non-participation to the study were analyzed. Results: Non-response did not cause socio-demographic distortion, but non-responders had statistically significantly fewer terminal patients than responders. Agreement rates were statistically significantly higher among responders than among non-responders for euthanasia, non-treatment decision and life-preserving statements. Neutral answers were statistically significantly more frequent among non-responders than among responders for life-preserving and euthanasia statements. The most commonly mentioned reason for non-participation was “lack of time”. Conclusion: Non-participation does cause an overestimation of proponents of life-shortening, as well as of life-preserving end-of-life decisions. Non-responders more often have ambiguous attitudes towards end-of-life decisions than responders. Antwortende und Nicht-Antwortende in einer Studie zu medizinischen Entscheidungen am Lebensende in Dänemark, Holland, Schweden und der Schweiz Fragestellung: Richtung und Ausmaß von Teilnahmeverzerrungen in der Sterbehilfeforschung sollen bestimmt werden. Methoden: Im Rahmen eines europäischen Forschungsprojektes zu medizinischen Entscheidungen am Lebensende wurde bei ärztinnen und ärzten in Dänemark, Holland, Schweden und in der Schweiz eine Non-response Studie durchgeführt. Die Personen wurden nach ihren Einstellungen zu und Erfahrungen mit medizinischen Entscheidungen am Lebensende befragt. Der Rücklauf reichte von 12.8% in Holland bis zu 39.4% in der Schweiz. Antwortende (n = 5 403) und Nichtantwortende (n = 866) wurden hinsichtlich soziodemographischer Merkmale, Erfahrungen mit sterbenden Patientinnen und Patienten und der Zustimmung zu Einstellungen gegenüber Entscheidungen am Lebensende verglichen. Im Weiteren wurden die Gründe für die Nicht-Teilnahme an der Hauptbefragung untersucht. Ergebnisse: Nicht-Teilnahme führt zu keinen soziodemographischen Verzerrungen, jedoch betreuten die Nichtantwortenden in Holland, der Schweiz und allen vier Ländern zusammen signifikant weniger sterbende Patientinnen und Patienten als die Antwortenden. Die Zustimmung zu den Statements über aktive Sterbehilfe und über passive Sterbehilfe wie auch zum Statement zur Lebenserhaltung unter allen Umständen fiel unter den Antwortenden signifikant höher aus als unter den Nichtantwortenden. Hinsichtlich der Lebenserhaltung unter allen Umständen sowie der aktiven Sterbehilfe waren neutrale Antworten unter den Nichtantwortenden signifikant häufiger als bei den Antwortenden. Als häufigster Grund für die Nicht-Teilnahme wurde “Zeitmangel” genannt. Schlussfolgerung: Die Nicht-Teilnahme führt zu einer überrepräsentation der Befürwortenden sowohl von lebensverkürzenden als auch von lebenserhaltenden Entscheidungen. Nichtantwortende haben häufiger unklare Einstellungen gegenüber Entscheidungen am Lebensende als Antwortende. Répondants et non-répondants dans une étude sur les décisions médicales en fin de vie au Danemark, aux Pays-Bas, en Suède et en Suisse Objectifs: Déterminer la nature et l’importance de biais de participation dans la recherche sur l’euthanasie. Méthode: Dans le cadre d’une recherche européenne sur les décisions médicales euthanasiques, une étude des non-réponses a été réalisée auprès de médecins au Danemark, aux Pays-bas, en Suède et en Suisse. Les questions abordaient les attitudes et l’expérience des médecins face à des décisions euthanasiques. Les taux de réponses varient de 12.8 (Pays-Bas) à 39.4% (Suisse). Les répondants (n = 5 403) et les non-répondants (n = 866) ont été comparés selon leurs caractéristiques socio-démographiques, leurs expériences avec des patients en phase terminale et leurs attitudes face à l’euthanasie. Les raisons d’une non-participation à l’étude ont été analysées. Résultats: Les non-réponses n’ont pas causé de déformation socio-démographique, cependant la catégorie des non-répondants compte de manière statistiquement significative moins de patients en phase terminale que la catégorie des répondants aux Pay-bas, en Suisse et dans l’ensemble des quatre pays. Le taux d’approbation d’affirmations sur le thème de l’euthanasie active et passive et du maintien de la vie était significativement plus élevé parmi les répondants que parmi les non-répondants. Les réponses neutres sur le thème du maintien de la vie et de l’euthanasie étaient plus souvent apportées par les non-répondants. Le «manque de temps» a été la cause de non-participation la plus souvent invoquée. Conclusion: La non-participation induit une surestimation des partisans de l’euthanasie, aussi bien que des partisans du maintien de la vie. Plus souvent que les répondants, les nonrépondants ont des points de vue ambigus envers les décisions d’euthanasie.
The authors question whether or not age plays a role in the honouring or rejection of euthanasia requests in The Netherlands, where euthanasia was legalised in 2002. They argue that qualitative case studies suggest that the current application of legal requirements of due care with regard to euthanasia (incurable and unbearable suffering, competence, and consistency of request) leads to discrimination against older people who ask for euthanasia. The authors plead for systematic research on this problem.
Trends in Medical End-of-Life Decision Making in Flanders, Belgium 1998–2001–2007
Medical Decision Making, 2010
In 2002, Belgium saw the enactment of 3 laws concerning euthanasia, palliative care, and patient rights that are likely to affect end-of-life decision making. This report examines trends in the occurrence and decision-making process of end-of-life practices in different patient groups since these legal changes. A large-scale retrospective survey in Flanders, Belgium, previously conducted in 1998 and 2001, was repeated in 2007. Questionnaires regarding end-of-life practices and the preceding decision-making process were mailed to physicians who certified a representative sample (N = 6927) of death certificates. The 2007 response rate was 58.4%. In patient groups in which the prevalence of life-ending drug use without explicit patient request has dropped, performance of euthanasia and assisted suicide has increased. The consistent increase in intensified pain and symptom alleviation was found in all patient groups except cancer patients. In 2007, competent patients were slightly more ...