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Citizens' opinions on new forms of euthanasia. A report from the Netherlands
Abstract
Euthanasia strictu sensu is about ending a patient's life at his or her explicit request. However, there are many cases of ending someone's life that are related to euthanasia in its classical form but do not neatly fit into the strict definition. Dutch citizens were asked to judge all kinds of 'euthanasia' and appeared to be able to do this in a highly balanced way. They do not use just one or two criteria to judge various cases of euthanasia, they seem to evaluate each new case on its own merits and they do so in a very thoughtful and sophisticated way, using a refined combination of criteria.
... Systematic reviews of quantitative studies from several countries, including Canada, show increasing support from these groups of stakeholders for MAiD in cases of competent terminally-ill patients experiencing severe pain who make an explicit request [10,11,[45][46][47]. Far fewer studies have investigated opinions of stakeholders on MAiD for patients with dementia [48][49][50][51][52][53][54][55][56][57][58]. None of these studies were conducted in Canada and only two have focused exclusively on this issue [53,56]. ...
... In our survey, sampled individuals have the option to complete a paper or online version of the questionnaire, which is a strategy shown to yield even higher response rates [82,83]. Second, earlier studies conducted abroad provide a solid basis for the design of high-quality clinical vignettes featuring incompetent patients, MAiD requests, and end-of-life practices [49][50][51][52][53][54][55][56][57][58]. Additionally, the practical problems and moral dilemmas created by advanced MAiD requests, and the arguments for and against MAiD for incompetent patients with dementia, have been thoroughly reviewed [34][35][36][37][38][39][40][41][42][43][44]. ...
Background:
Alzheimer's disease and related disorders affect a growing number of people worldwide. Quality of life is generally good in the early stages of these diseases. However, many individuals fear living through the advanced stages. Such fears are triggering requests for medical assistance in dying (MAiD) by patients with dementia. Legislation was recently passed in Canada and the province of Quebec allowing MAiD at the explicit request of a patient who meets a set of eligibility criteria, including competence. Some commentators have argued that MAiD should be accessible to incompetent patients as well, provided appropriate safeguards are in place. Governments of both Quebec and Canada are currently considering whether MAiD should be accessible through written requests made in advance of loss of capacity.
Objective:
Aimed at informing the societal debate on this sensitive issue, this study will compare stakeholders' attitudes towards expanding MAiD to incompetent patients with dementia, the beliefs underlying stakeholders' attitudes on this issue, and the value they attach to proposed safeguards. This paper describes the study protocol.
Methods:
Data will be collected via a questionnaire mailed to random samples of community-dwelling seniors, relatives of persons with dementia, physicians, and nurses, all residing in Quebec (targeted sample size of 385 per group). Participants will be recruited through the provincial health insurance database, Alzheimer Societies, and professional associations. Attitudes towards MAiD for incompetent patients with dementia will be elicited through clinical vignettes featuring a patient with Alzheimer's disease for whom MAiD is considered towards the end of the disease trajectory. Vignettes specify the source of the request (from the patient through an advance request or from the patient's substitute decision-maker), manifestations of suffering, and how close the patient is to death. Arguments for or against MAiD are used to elicit the beliefs underlying respondents' attitudes.
Results:
The survey was launched in September 2016 and is still ongoing. At the time of submission, over 850 respondents have returned the questionnaire, mostly via mail.
Conclusions:
This study will be the first in Canada to directly compare views on MAiD for incompetent patients with dementia across key stakeholder groups. Our findings will contribute valuable data upon which to base further debate about whether MAiD should be accessible to incompetent patients with dementia, and if so, under what conditions.
... Another variable that influences attitudes toward euthanasia is patient age. Studies show that there is greater legitimacy for euthanasia for elderly patients (Frileux et al., 2003;Van Holsteyn & Trappenburg, 1998). A study conducted in the Netherlands between 1984-1993 showed that the average age at which euthanasia was performed in men was 62 years (range 15 -94 years), with the decade of life in which euthanasia was most prevalent being 60-69. ...
This study aims to extend our knowledge regarding attitudes toward euthanasia. Specifically, the effect of patient's age and illness type. 123 participants were randomly assigned to 1 of 4 groups completed the Assessing Right to Die Attitudes (ARDA) questionnaire after reading a patients age (79 vs. 29 year old) and illness type (cancer vs. depression) description. Findings revealed more positive attitudes toward euthanasia when the patient was physically ill, as opposed to mentally ill. Participants' attitude towards euthanasia was more positive when the patient was elderly. Illness type as a function of the patient's age did not significantly influence attitudes towards euthanasia. The results of the current study reinforce the individual influence of illness type and of patient age on attitudes toward euthanasia, and suggest additional avenues for further research regarding their combined influence.
... They do not use just one or two criteria to judge various cases of euthanasia, they seem to evaluate each new case on its own merits and they do so in a very thoughtful and sophisticated way, using a refined combination of citeria. (Van Holsteyn/Trappenburg, 1998) Einleitung Derzeit besteht sowohl im deutschsprachigen als auch im internationalen Raum eine grosse, kaum mehrüberblickbare, Fülle von empirischen Studien zur Sterbehilfe und mit Sterbehilfe in einem Zusammenhang stehender Themen (Beihilfe zum Suizid, terminale Sedierung, etc.). Immer neue an jeweils unterschiedlichen Personengruppen durchgeführte Studien zu jeweils leicht nuancierten Fragestellungen werden publiziert, welche -so hat man den Eindruck -trotzdem nicht zu einem fundierten Verständnis darüber führen, wovon die Einstellungen, welche Leute gegenüber Sterbehilfe haben, abhängen, weil sie sich auf Details kaprizieren anstatt sich darum zu bemühen, Gesamtzusammenhänge aufzuzeigen. ...
... In addition, several recent studies indicate that an increasing number of Dutch people can imagine appreciating having a physician assist them in the dying process, even if they do not suffer from a serious disease (Buiting et al., 2012;Van Delden et al., 2011;Van Holsteyn and Trappenburg, 1998). Although in the Netherlands euthanasia and physician-assisted suicide are only permitted in cases of unbearable and hopeless suffering that stems from a medical condition, a growing minority of the general public supports physician-assisted suicide or euthanasia in cases of elderly people who do not suffer from a medical condition but who are tired of living (Raijmakers et al., 2013;Van Delden et al., 2011). ...
In the Netherlands, there has been much debate on the question whether elderly people over 70 who are tired of life and who consider their life to be completed, should have legal options to ask for assisted dying. So far there has been little research into the experiences of these elderly people. In order to develop deliberate policy and care that targets this group of elderly people, it is necessary to understand their lifeworld. The aim of this paper is to describe the phenomenon 'life is completed and no longer worth living' from a lifeworld perspective, as it is lived and experienced by elderly people. Between April to December 2013, we conducted 25 in-depth interviews. A reflective lifeworld research design, drawing on the phenomenological tradition, was used during the data gathering and data analysis. The essential meaning of the phenomenon is understood as 'a tangle of inability and unwillingness to connect to one's actual life', characterized by a permanently lived tension: daily experiences seem incompatible with people's expectations of life and their idea of whom they are. While feeling more and more disconnected to life, a yearning desire to end life is strengthened. The experience is further explicated in its five constituents: 1) a sense of aching loneliness; 2) the pain of not mattering; 3) the inability to express oneself; 4) multidimensional tiredness; and 5) a sense of aversion towards feared dependence. This article provides evocative and empathic lifeworld descriptions contributing to a deeper understanding of these elderly people and raises questions about a close association between death wishes and depression in this sample.
Copyright © 2015 Elsevier Ltd. All rights reserved.
... Three studies examining public ATE in severe dementia found that around 50% were in favour (van Holsteyn and Trappenburg, 1998;Ryynänen et al., 2002;Williams et al., 2007). However, two studies conducted in the Netherlands reported higher support (Rietjens et al., 2005;Kouvenhoven et al., 2013), with the most recent study by Kouvenhoven et al. (2013) finding 77% of the sample in favour. ...
Background
Assisted death and dementia is a controversial topic that, in recent years, has been subject to considerable clinical, ethical and political debate.Objective
This paper reviews the international literature on attitudes towards assisted dying in dementia and considers the factors associated with these.DesignA systematic literature search was conducted in Cumulative Index to Nursing and Allied Health Literature, Excerpta Medica Database, PsychINFO and Web of Science between 1992 and August 2013. Electronic and hand searches identified 118 potential relevant studies. Eighteen studies met the full inclusion criteria and were screened using a quality assessment tool.ResultsHealth professionals hold more restrictive views towards assisted dying, which appear less affected by their cultural background, than the public, patients and carers. However, opinions within each population vary according to dementia severity and issues of capacity, as well as differing according to factors such as age, ethnicity, gender and religion of those surveyed. There also appears to be a trend towards more accepting attitudes over time.Conclusions
Sociodemographic factors can influence attitudes towards assisted dying. The impact of these, however, may also differ according to the population surveyed. The findings from this review can contribute to current debates and inform clinical practice and future research in this area. Copyright © 2014 John Wiley & Sons, Ltd.
... In view of this ongoing debate, it would be important to have insight into the attitudes and opinions of the general population and physicians with regard to these issues. However, almost no data are available (Holsteyn and van Trappenburg, 1998;van Trappenburg and Holsteyn, 2001). This study therefore aims to obtain insight in the attitudes and opinions of the general population and physicians with regard to EAS in the absence of a severe disease, and the availability of a 'suicide pill' for older people. ...
... Our aims were to extend the scope and methods of Cuperus-Bosma and colleagues 47 by looking at lay people and determining not only what factors are most important for them in judging the acceptability of physicians' interventions to end patients' lives, but also in what way these factors interact. We measured, to begin with, the impact of a broad spectrum of factors already shown to affect people's opinions: the patient's age; 46 the level of curability of the illness; 31 37 46 48 the degree of physical suffering; 37 46 the patient's mental status; 15 37 the kind of life ending procedure envisioned (euthanasia versus physician assisted suicide), 31 45 and the presence or absence of an explicit request. 47 We kept constant the type of suffering, which was identified as physical rather than mental, and life expectancy, which was set at one week to one month. ...
Our aim was to understand better how people judge the acceptability of physician-assisted suicide (PAS). We found that, for people in France of all ages and for elderly people with life-threatening illnesses, acceptability is an additive combination of the number of requests for PAS, the patient's age, the amount of physical suffering, and the degree of curability of the illness, not only when judging for hypothetical patients, but also for their spouses and for themselves. PAS can be highly acceptable to people even when the patient does not satisfy all the criteria of legislation about PAS.
... Our aims were to extend the scope and methods of Cuperus-Bosma and colleagues 47 by looking at lay people and determining not only what factors are most important for them in judging the acceptability of physicians' interventions to end patients' lives, but also in what way these factors interact. We measured, to begin with, the impact of a broad spectrum of factors already shown to affect people's opinions: the patient's age; 46 the level of curability of the illness; 31 37 46 48 the degree of physical suffering; 37 46 the patient's mental status; 15 37 the kind of life ending procedure envisioned (euthanasia versus physician assisted suicide), 31 45 and the presence or absence of an explicit request. 47 We kept constant the type of suffering, which was identified as physical rather than mental, and life expectancy, which was set at one week to one month. ...
To discover what factors affect lay people's judgments of the acceptability of physician assisted suicide and euthanasia and how these factors interact.
Participants rated the acceptability of either physician assisted suicide or euthanasia for 72 patient vignettes with a five factor design--that is, all combinations of patient's age (three levels); curability of illness (two levels); degree of suffering (two levels); patient's mental status (two levels), and extent of patient's requests for the procedure (three levels).
Convenience sample of 66 young adults, 62 middle aged adults, and 66 older adults living in western France.
In accordance with the functional theory of cognition of N H Anderson, main effects, and interactions among patient factors and participants' characteristics were investigated by means of both graphs and ANOVA.
Patient requests were the most potent determinant of acceptability. Euthanasia was generally less acceptable than physician assisted suicide, but this difference disappeared when requests were repetitive. As their own age increased, participants placed more weight on patient age as a criterion of acceptability.
People's judgments concur with legislation to require a repetition of patients' requests for a life ending act. Younger people, who frequently are decision makers for elderly relatives, place less emphasis on patient's age itself than do older people.
Background and Objectives
In 2027, Canadians whose only medical condition is an untreatable mental illness and who otherwise meet all eligibility criteria will be able to request Medical Assistance in Dying (MAiD). This study investigates the attitudes of undergraduate students towards widening the scope of MAiD for physical illness for certain psychiatric conditions. We were interested in understanding if age, information, and type of mental illness influenced undergraduates’ acceptance or rejection of MAiD for mental illness (MAiD-MI).
Method
413 undergraduate students participated in this study which examined the factors that correlate with the acceptance or rejection of MAiD-MI. Four scenarios were presented in which age (older or younger) and illness type (depression or schizophrenia) were manipulated. Demographic questions and measures assessing personality, religion, and attitudes towards euthanasia were administered. Questions assessing participants’ general understanding of MAiD and their life experiences with death and suicide were also asked.
Results
Most of the participants accepted MAiD-MI for both depression and schizophrenia. As hypothesized, support for MAiD-MI was higher for patients with schizophrenia than for depression. Also as hypothesized, support was higher for older patients than for younger patients. Variables such as religion, personality and political affiliation were also associated with acceptance or rejection of MAiD-MI. Finally, consistent with our hypotheses, participants’ understanding of MAiD and experiences with death and suicide was predictive of support for MAiD-MI.
In this chapter, we explore the issue of assisted dying for individuals with dementia at the nexus of ethics and law. We set out the basic medical realities of dementia and the available data about the desire for the option of assisted dying in the face of dementia. We then describe law and practice with respect to voluntary euthanasia and assisted suicide in jurisdictions that permit at least some assisted dying. We conclude that, because of the peculiar ways in which some of the features of dementia interact with specific legislative provisions, less access to assisted dying for persons with dementia can be realized through the legislation than might have been intended or expected. We then describe draft assisted dying legislation that is before the federal Parliament of Canada. We conclude that, because of the peculiar ways in which some of the features of dementia interact with specific legislative provisions, more access to assisted dying for persons with dementia would be realized, if the legislation was passed as drafted, than might be intended or expected. This exercise reveals that very careful attention needs to be paid to the features of dementia if drafting assisted dying legislation in order to actually achieve the desired law reform effect (whatever that might be). The interplay of common ethical rationales for permitting assisted dying (e.g., autonomy and alleviation of suffering) with common features of dementia (e.g., loss of competence before the terminal phase of the illness, loss of the capacity to communicate before the loss of the capacity to suffer) raises challenges for translating one’s ethical position on assisted dying for individuals with dementia into law. NB: This chapter is current up to 2015.
Dementia is increasingly being recognised as a public health priority and poses one of the largest challenges we face as a society. At the same time, there is a growing awareness that the quest for a cure for Alzheimer's disease and other causes of dementia needs to be complemented by efforts to improve the lives of people with dementia. To gain a better understanding of dementia and of how to organize dementia care, there is a need to bring together insights from many different disciplines. Filling this knowledge gap, this book provides an integrated view on dementia resulting from extensive discussions between world experts from different fields, including medicine, social psychology, nursing, economics and literary studies. Working towards a development of integrative policies focused on social inclusion and quality of life, Dementia and Society reminds the reader that a better future for persons with dementia is a collective responsibility.
Hope is needed for persons confronting the limits of human life, antagonised by the threats of death. It is needed also for those health and medical professionals constrained by the institution of medicine, determined by market metaphors and instrumental reasoning. Yet, despair can masquerade as hope for such persons when functional hoping for particular outcomes or aims proves futile and aimless. The following will examine such masquerades, while giving attention to particular expressions of autonomy, which persist as fodder for despair in our late modern milieu. The late classical account of Hercules and his death, as well as contemporary reasons for soliciting medical assistance in dying, will focus on the diagnostics of despair, while a Christian account practicing presence, and of hope as a concrete posture enfleshed by habits of patience, among other virtues, will point toward counter-narratives that might sustain persons in times of crisis and enable persons’ flourishing as human beings, even unto death.
The Netherlands was the first democracy to tolerate euthanasia. The opening question was “Why the Netherlands?” Why does the Netherlands accept euthanasia de facto if not de jure? What are the significant factors that made the Dutch tradition and culture open to the euthanasia movement?
This essay raises the question why there is a difference between the way we treat animals and humans, when it comes to killing. The question is analysed with the help of two special cases. On the one hand, a non-autonomous patient whose suffering is immense and hopeless. On the other hand, an old dog that equally suffers badly. The differences and similarities are analysed and discussed from the perspective of ethical theory. The discussion includes an analysis of the taboo on killing humans and the possible biological explanation for this phenomenon. It is argued that overriding this taboo causes existential moral doubts. This burden can serve as a moral justification for operating (even) more cautiously in case of the human patient. The conclusion has an impact on both our dealings with animals and humans.
In this chapter, we explore the issue of assisted dying for individuals with dementia at the nexus of ethics and law. We set out the basic medical realities of dementia and the available data about the desire for the option of assisted dying in the face of dementia. We then describe law and practice with respect to voluntary euthanasia and assisted suicide in jurisdictions that permit at least some assisted dying. We conclude that, because of the peculiar ways in which some of the features of dementia interact with specific legislative provisions, less access to assisted dying for persons with dementia can be realized through the legislation than might have been intended or expected. We then describe draft assisted dying legislation that is before the federal Parliament of Canada. We conclude that, because of the peculiar ways in which some of the features of dementia interact with specific legislative provisions, more access to assisted dying for persons with dementia would be realized, if the legislation was passed as drafted, than might be intended or expected. This exercise reveals that very careful attention needs to be paid to the features of dementia if drafting assisted dying legislation in order to actually achieve the desired law reform effect (whatever that might be). The interplay of common ethical rationales for permitting assisted dying (e.g., autonomy and alleviation of suffering) with common features of dementia (e.g., loss of competence before the terminal phase of the illness, loss of the capacity to communicate before the loss of the capacity to suffer) raises challenges for translating one’s ethical position on assisted dying for individuals with dementia into law.
Our aim was to understand better how people judge the acceptability of physician-assisted suicide (PAS). We found that, for people in France of all ages and for elderly people with life-threatening illnesses, acceptability is an additive combination of the number of requests for PAS, the patient's age, the amount of physical suffering, and the degree of curability of the illness, not only when judging for hypothetical patients, but also for their spouses and for themselves. PAS can be highly acceptable to people even when the patient does not satisfy all the criteria of legislation about PAS.
Meinungsbefragungen der deutschen Bevölkerung zum Thema aktive Sterbehilfe bei unheilbar Kranken ergaben bisher sowohl hohe Ablehnungs-als auch hohe Zustimmungsraten. Nach einer kritischen Diskussion der methodischen Konzepte solcher Unter-suchungen werden die Ergebnisse einer Repräsentativerhebung an 1957 Personen (Altersspanne 14 ± 96 Jahre) des Meinungsfor-schungsinstituts USUMA im Februar 2001 im soziodemografi-schen Vergleich dargestellt. In das verwendete alternative Frage-konzept wurden die passive, die aktive und die indirekte ärztli-che Sterbehilfe sowie die ärztliche Beihilfe zum Suizid einbezo-gen. Eine mögliche Zustimmung war an die Bedingungen ¹erklär-ter Wille und unerträgliche Schmerzenª, ¹erklärter Willeª, ¹mut-maûlicher Willeª und ¹in alleiniger Verantwortung des Arztesª gebunden. Auûerdem wurde nach dem persönlichen Wunsch im Fall einer unheilbaren Erkrankung gefragt. Die ermittelten Häufigkeitsverteilungen werten die Bedingung ¹erklärter Willeª unabhängig von dem Zusatzkriterium Schmerz und die legalen Formen ärztlicher Sterbehilfe (passive und indirekte) auf. Die Rangfolge der hypothetischen persönlichen Inanspruchnahme lautet: passive Sterbehilfe 26,1 %, aktive Sterbehilfe 21,1 %, indi-rekte Sterbehilfe 13,1 % und Beihilfe zum Suizid 6,2 %. Die bekun-dete Inanspruchnahme ist bei jeder Form der ärztlichen Sterbe-hilfe deutlich geringer als die Zustimmung zur allgemeinen Frei-gabe für die Gesellschaft. Das lässt auf eine Zurückhaltung der Bevölkerung gegenüber der konkreten Realisierung von Sterbe-hilfe schlieûen. Bei Personen über 60 Jahre nimmt die Zustim-mung bei jeder Form der ärztlichen Sterbehilfe im Vergleich zu jüngeren Personen signifikant ab. Personen mit subjektiv schlechtem Gesundheitszustand plädieren stärker für die alleini-Abstract
The birth of the Dutch law Euthanasia has been recently legalized in the Netherlands (since April 1, 2002). In this article, we present the various cultural and historical factors that contributed to the law, the guidelines for the procedure and the resulting controversy.
The intervening factors Internationally, the attitude concerning end of life care are heterogenic and also directly depend on religious and cultural factors. In the Netherlands, the health system promotes the maintenance at home of the terminally ill. However, the financial aspects (private health insurance) interact with the management of these patients. The rules for euthanasia are very strict and a declaration must be registered. Dedicated commissions are organised to control that the rules are applied.
The current debate concerns the pertinence of the regulations, the attitude towards handicapped people and children, and the need to develop palliative care. The latter have only recently been developed in the country. The priority is focusing on old peoples’ homes. The Netherlands is slow in this regard, but a new draft law is soon to be presented to the authorities, and will most probably enable the gaps to be bridged.
Euthanasia was recently legalized in The Netherlands. In the present article, we present the different cultural and historical factors which contributed to this legislation and discuss the regulatory procedures to follow as well as the resulting controversies.
Attitudes concerning the end of life vary greatly worldwide and depend directly on cultural and religious factors. In The Netherlands, the health care system favors maintaining terminal patients in their home, but economic necessities inherent in the privately managed organization have had considerable impact on practical implementation. Euthanasia is authorized but must abide by very strict regulations and must be reported. Control commissions verify compliance. The current debate centers on the pertinence of these criteria, euthanasia of handicapped persons and children, and the need for improving palliative care which has only recently become developed in the country. The Netherlands has only one devoted palliative care unit. Priority has been placed on the recognized deficiency of nursing homes. A proposed law designed to fill the gaps is to be presented to the legislative body.
Vezzoni brengt als eerste de praktijk van schriftelijke wilsverklaringen in kaart. Zijn onderzoek bestond onder meer uit telefonische interviews met verpleeghuisartsen, huisartsen en notarissen. De onbekendheid met het fenomeen blijkt alleen al uit verwarring over de terminologie. Vaak hoorde de promovendus spreken over euthanasieverklaringen . Maar deze vallen onder een andere wet en zijn bovendien niet bindend. Zelfs notarissen blijken verrassend genoeg lang niet altijd goed op de hoogte. Gebrek aan informatie Van de Nederlandse bevolking beschikt nog geen één procent over een schriftelijke behandelweigering. Zelfs onder specifieke groepen als ouderen of terminaal zieken ligt het aantal onder een op de tien mensen. Vooral het gebrek aan informatie houdt de frequentie van deze documenten laag. Ter vergelijking: in de Verenigde Staten beschikt een op de drie verpleeghuisbewoners over een schriftelijke wilsverklaring. Dat komt mede omdat door de overheid gefinancierde zorginstellingen verplicht zijn alle inkomende patiënten te informeren over dit recht. Eigen oordeel Vezzoni constateert dat de negatieve en passieve houding van artsen ook niet bijdraagt aan het vergroten van de bekendheid. Nederlandse artsen zeggen het principe van zelfbeschikking te ondersteunen, maar als het er op aankomt geven ze er de voorkeur aan om de besluitvorming over wilsonbekwame patiënten te baseren op hun eigen medisch oordeel. Artsen verstrekken bovendien geen informatie aan de patiënt over de mogelijkheid een schriftelijke wilsverklaring op te stellen en tonen weinig betrokkenheid bij het opstellen van schriftelijke wilsverklaringen. Al met al heeft de onbekendheid tot gevolg dat de kwaliteit van schriftelijke wilsverklaringen doorgaans laag is. Afdwingbaar De vage en algemene formuleringen in de huidige behandelweigeringen geven artsen een vrijbrief om naar hun eigen opvattingen te handelen. Ze voelen weinig voor de bindende kracht, maar het niet naleven van een verklaring is wel degelijk juridisch afdwingbaar. De promovendus spreekt de wens uit dat er namens een patiënt eens een aanklacht wordt ingediend. Een rechterlijke uitspraak zou de bekendheid en daarmee de effectiviteit van de wet volgens hem ten goede komen. Voorwaarden voor succes Vezzoni vindt dat de wet onder voorwaarden zeker een succes zou kunnen worden. Het zal helpen wanneer elke schriftelijke wilsverklaring een vertegenwoordiger aanwijst die deelneemt aan de interpretatie van de wilsverklaring en toeziet op de juiste uitvoering. Een vertegenwoordiger kan twijfels over formuleringen wegnemen en blijkt voor artsen moeilijker te negeren dan een schriftelijk document. Verder is een groter gebruik en betere kwaliteit van de documenten mogelijk wanneer potentiële gebruikers geïnformeerd zijn over hun rechten. Meer betrokkenheid artsen Een andere mogelijk effectieve maatregel is het bevorderen van een meer actieve betrokkenheid van doktoren in het adviseren van patiënten die een schriftelijke wilsverklaring willen opstellen. Dit zou ook een positieve invloed kunnen hebben op hun houding ten opzichte van het nut en het belang van deze documenten. Ten slotte zou de overheid een model-verklaring kunnen opstellen en daar ruime bekendheid aan geven. Momenteel is het enig goed doordachte model (gebruikt onder meer door notarissen) dat van de Nederlandse Vereniging voor een Vrijwillige Levenseinde (NVVE). Maar daarvoor moet je lid zijn van een belangenorganisatie die euthanasie propageert, terwijl veel potentiële gebruikers van een schriftelijke wilsverklaring van euthanasie juist niets moeten hebben. Bron KNAW onderzoekinformatie
Euthanasia is an increasingly debated subject among specialized professionals and also among lay people, even in countries such as Brazil where it is not authorized. It is questionable, however, if the concept of euthanasia is well known by these persons.
The goal of this study was to investigate knowledge about the definition of euthanasia by family caregivers of patients with dementia and by specialized physicians and also to investigate their personal opinion on this topic.
We prospectively interviewed 30 physicians from three different medical specialties and 40 family caregivers of patients with Alzheimer's disease using a structured questionnaire. Two clinical vignettes were also presented to the physicians in order to ascertain their personal opinion about euthanasia.
Among the caregivers, 10 (25.0%) knew the correct definition of euthanasia. Regarding their personal view, nine (22.5%) were in favor, while 20 (50.0%) were against. The remaining 11 (27.5%) caregivers were unable to define their position. Among the physicians, 19 (63.3%) gave a coherent answer regarding the definition of euthanasia. When they were presented with the clinical vignettes, less than 50% of them were in favor of euthanasia.
The definition of euthanasia was unknown by most of the lay individuals and also by one third of the physicians. Although it is not officially approved in Brazil, a small proportion of family caregivers and also of specialized physicians would be in favor of the practice of euthanasia.
This article provides a critical analysis of Dutch euthanasia policy and practice. The research benefited from twenty-eight interviews conducted in the Netherlands during the summer of 1999 with some of the leading figures who dictate the decision-making process and take an active part in the debates. The discussion begins with a review of the two major Dutch reports on euthanasia and the conflicting views and interpretations offered by the literature. Next, I provide some data about the interviews, and then analysis indicating that the Dutch Guidelines on the policy and practice of euthanasia do not provide ample mechanisms against abuse. I argue that the Dutch Guidelines are insufficient, do not provide adequate control over the practice of euthanasia, and that the entire policy should be revised and made more coherent and more comprehensive.
The Dutch experience has influenced the debate on euthanasia and death with dignity around the globe, especially with regard to whether physician-assisted suicide and euthanasia should be legitimized or legalized. Review of the literature reveals complex and often contradictory views about the Dutch experience. Some claim that the Netherlands offers a model for the world to follow; others believe that the Netherlands represents danger, rather than promise, and that the Dutch experience is the definitive answer regarding why we should not make active euthanasia and physician-assisted suicide part of our lives.
Having investigated the Dutch experience for a number of years, in the summer of 1999 I went to the Netherlands to visit the major centers of medical ethics as well as some research hospitals, and to speak with leading figures in euthanasia policy and practice. This essay commences by providing some background information on the practice of euthanasia and on the legal framework, and then reports the main answers to my first question: Why the Netherlands?
THE BIRTH OF THE DUTCH LAW: Euthanasia has been recently legalized in the Netherlands (since April 1, 2002). In this Article, we present the various cultural and historical factors that contributed to the law, the guidelines for the procedure and the resulting controversy. THE INTERVENING FACTORS: Internationally, the attitude concerning end of life care are heterogenic and also directly depend on religious and cultural factors. In the Netherlands, the health system promotes the maintenance at home of the terminally ill. However, the financial aspects (private health insurance) interact with the management of these patients. The rules for euthanasia are very strict and a declaration must be registered. Dedicated commissions are organised to control that the rules are applied. The current debate concerns the pertinence of the regulations, the attitude towards handicapped people and children, and the need to develop palliative care. The latter have only recently been developed in the country. The priority is focusing on old peoples' homes. The Netherlands is slow in this regard, but a new draft law is soon to be presented to the Authorities, and will most probably enable the gaps to be bridged.
In The Netherlands, there has been a continuing public debate about the acceptability and regulatory system for medical decision-making concerning the end of life. We studied attitudes of the Dutch general public towards different types of end-of-life decisions in various situations and compared them to attitudes of physicians. Questionnaires were mailed to 1777 members of the Dutch general public (response: 78%). A total of 391 Dutch physicians, including general practitioners, nursing home physicians and clinical specialists, were interviewed in person (response: 81%). In both the survey and physician interviews, questions were asked about attitudes towards active ending of life, terminal sedation, and increasing morphine with premature death as a likely consequence, using hypothetical cases of different patients. By logistic regression analysis, the differences between public and physicians' attitudes were assessed, as well as the associations between attitudes of the general public and their personal characteristics. Acceptance of active ending of life at the request of a terminally ill cancer patient was higher among the general public (85%) than among physicians (64%). For physicians, acceptance decreased to 36% for an incompetent adult, 11% for a patient without a serious disease, and 6% for a patient with dementia. For the general public, these percentages were 63%, 37%, and 62%, respectively. Between both groups, no differences were found in acceptance of terminal sedation and increasing morphine. For the general public, determinants of support for active ending of life were being non-religious, lower education, and having a single household. Acknowledging the observed differences in appreciation of end-of-life decision-making between the general public and physicians is important in doctor-patient communication and in public debate and policymaking. Continued monitoring of practices and informing the general public and policymakers about the clinical and ethical consequences of different types of end-of-life decisions is important.
In the Netherlands there has been ongoing debate in the past 10 years about the availability of a hypothetical "suicide pill", with which older people could end their life in a dignified way if they so wished. Data on attitudes to the suicide pill were collected in the Netherlands from 410 physicians, 1,379 members of the general population, and 87 relatives of patients who died after euthanasia or physician-assisted suicide. The general population and relatives were more in favor than physicians. Fifteen percent of the general population and 36% of the relatives thought a suicide pill should be made available.
Questionnaires were mailed to 1777 members of the Dutch public (response: 78%), measuring to what extent respondents appreciate life-prolonging treatment, even if it would seriously impair their quality of life. The association between these attitudes and personal characteristics and initiatives to engage in advance care planning was analyzed. About one third of the respondents prefers quality of life at the expense of survival, another third prefers length of life regardless of impaired quality, whereas the remaining third did not express a clear attitude towards quality or length of life. People who were younger, male, having children, having religious beliefs, and without a history of serious illness were more likely to strive for length, whereas the reverse associations were found for striving for quality. The latter was related to undertaking initiatives to engage in advance care planning. Awareness of differences in attitudes towards life-prolonging treatment within the public may improve communication about appropriate end-of-life care.
In 1991 a new procedure for reporting physician-assisted deaths was introduced in the Netherlands that led to a tripling in the number of reported cases. In 1995, as part of an evaluation of this procedure, a nationwide study of euthanasia and other medical practices concerning the end of life was begun that was identical to a study conducted in 1990.
We conducted two studies, the first involving interviews with 405 physicians (general practitioners, nursing home physicians, and clinical specialists) and the second involving questionnaires mailed to the physicians attending 6060 deaths that were identified from death certificates. The response rates were 89 percent and 77 percent, respectively.
Among the deaths studied, 2.3 percent of those in the interview study and 2.4 percent of those in the death-certificate study were estimated to have resulted from euthanasia, and 0.4 percent and 0.2 percent, respectively, resulted from physician-assisted suicide. In 0.7 percent of cases, life was ended without the explicit, concurrent request of the patient. Pain and symptoms were alleviated with doses of opioids that may have shortened life in 14.7 to 19.1 percent of cases, and decisions to withhold or withdraw life-prolonging treatment were made in 20.2 percent. Euthanasia seems to have increased in incidence since 1990, and ending of life without the patient's explicit request to have decreased slightly. For each type of medical decision except those in which life-prolonging treatment was withheld or withdrawn, cancer was the most frequently reported diagnosis.
Since the notification procedure was introduced, end-of-life decision making in the Netherlands has changed only slightly, in an anticipated direction. Close monitoring of such decisions is possible, and we found no signs of an unacceptable increase in the number of decisions or of less careful decision making.
After a rather uneventful election campaign, the results of the May 1986 Dutch parliamentary election were a surprise to virtually all involved. Since the introduction of regular opinion polling in the 1960s, no election has taken place when the polls were ‘wrong’. However, in 1986 last minute shifts that were stronger than had ever occurred in the Netherlands produced results that differed significantly from the predictions based upon the polls published immediately prior to the election.
Analysis of Ordinal Categorical Data Alan Agresti Statistical Science Now has its first coordinated manual of methods for analyzing ordered categorical data. This book discusses specialized models that, unlike standard methods underlying nominal categorical data, efficiently use the information on ordering. It begins with an introduction to basic descriptive and inferential methods for categorical data, and then gives thorough coverage of the most current developments, such as loglinear and logit models for ordinal data. Special emphasis is placed on interpretation and application of methods and contains an integrated comparison of the available strategies for analyzing ordinal data. This is a case study work with illuminating examples taken from across the wide spectrum of ordinal categorical applications. 1984 (0 471-89055-3) 287 pp. Regression Diagnostics Identifying Influential Data and Sources of Collinearity David A. Belsley, Edwin Kuh and Roy E. Welsch This book provides the practicing statistician and econometrician with new tools for assessing the quality and reliability of regression estimates. Diagnostic techniques are developed that aid in the systematic location of data points that are either unusual or inordinately influential; measure the presence and intensity of collinear relations among the regression data and help to identify the variables involved in each; and pinpoint the estimated coefficients that are potentially most adversely affected. The primary emphasis of these contributions is on diagnostics, but suggestions for remedial action are given and illustrated. 1980 (0 471-05856-4) 292 pp. Applied Regression Analysis Second Edition Norman Draper and Harry Smith Featuring a significant expansion of material reflecting recent advances, here is a complete and up-to-date introduction to the fundamentals of regression analysis, focusing on understanding the latest concepts and applications of these methods. The authors thoroughly explore the fitting and checking of both linear and nonlinear regression models, using small or large data sets and pocket or high-speed computing equipment. Features added to this Second Edition include the practical implications of linear regression; the Durbin-Watson test for serial correlation; families of transformations; inverse, ridge, latent root and robust regression; and nonlinear growth models. Includes many new exercises and worked examples.
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