Fourth evaluation of the law on the review of termination of life on request and assisted suicide (Euthanasia Act)

This fall, an extensive study will start to evaluate the Dutch Euthanasia Act. This law was enacted in 2002. According to this law, physicians must report cases of euthanasia and physician-assisted suicide. The cases are then judged by regional euthanasia review committees consisting of a lawyer, a physician and an ethicist. Only if they conclude that the case does not meet the requirements for prudent practice, it will be sent to the public prosecutor. The study will be focused on the practice of medical end-of-life decision-making, the functioning and effects of the Euthanasia Act, and opinions of physicians about the scope of the law and the demarcation between different end-of-life decisions. The study will comprise 4 sub-studies: a judicial evaluation, a death certificate study, a survey among physicians and a panel study among physicians, nurses, members of euthanasia review committees, lawyers and ethicists. This study is the fourth in a row of nationwide studies into end-of-life practices that have been performed since 1990. The previous studies contributed to the public debate about medical care at the end of life and to the development of policy in this field. It is expected that this study, by providing up-to-date information on and insight into end-of-life care in the Netherlands, will do the same.     

Attitudes on euthanasia, physician-assisted suicide and terminal sedation--a survey of the members of the German Association for Palliative Medicine

BACKGROUND: Due to recent legislations on euthanasia and its current practice in the Netherlands and Belgium, issues of end-of-life medicine have become very vital in many European countries. In 2002, the Ethics Working Group of the German Association for Palliative Medicine (DGP) has conducted a survey among its physician members in order to evaluate their attitudes towards different end-of-life medical practices, such as euthanasia (EUT), physician-assisted suicide (PAS), and terminal sedation (TS). METHODS: An anonymous questionnaire was sent to the 411 DGP physicians, consisting of 14 multiple choice questions on positions that might be adopted in different hypothetical scenarios on situations of "intolerable suffering" in end-of-life care. For the sake of clarification, several definitions and legal judgements of different terms used in the German debate on premature termination of life were included. For statistical analysis t-tests and Pearson-correlations were used. RESULTS: The response rate was 61% (n = 251). The proportions of the respondents who were opposed to legalizing different forms of premature termination of life were: 90% opposed to EUT, 75% to PAS, 94% to PAS for psychiatric patients. Terminal sedation was accepted by 94% of the members. The main decisional bases drawn on for the answers were personal ethical values, professional experience with palliative care, knowledge of alternative approaches, knowledge of ethical guidelines and of the national legal frame. CONCLUSIONS: In sharp contrast to similar surveys conducted in other countries, only a minority of 9.6% of the DGP physicians supported the legalization of EUT. The misuse of medical knowledge for inhumane killing in the Nazi period did not play a relevant role for the respondents' negative attitude towards EUT. Palliative care needs to be stronger established and promoted within the German health care system in order to improve the quality of end-of-life situations which subsequently is expected to lead to decreasing requests for EUT by terminally ill patients.     

Attitudes on euthanasia,physician-assisted suicide and terminal sedation -- A survey of the members of the German Association for Palliative Medicine

Background: Due to recent legislations on euthanasia and its current practice in the Netherlands and Belgium, issues of end-of-life medicine have become very vital in many European countries. In 2002, the Ethics Working Group of the German Association for Palliative Medicine (DGP) has conducted a survey among its physician members in order to evaluate their attitudes towards different end-of-life medical practices, such as euthanasia (EUT), physician-assisted suicide (PAS), and terminal sedation (TS). Methods: An anonymous questionnaire was sent to the 411 DGP physicians, consisting of 14 multiple choice questions on positions that might be adopted in different hypothetical scenarios on situations of “intolerable suffering” in end-of-life care. For the sake of clarification, several definitions and legal judgements of different terms used in the German debate on premature termination of life were included. For statistical analysis t-tests and Pearson-correlations were used. Results: The response rate was 61% (n=251). The proportions of the respondents who were opposed to legalizing different forms of premature termination of life were: 90% opposed to EUT, 75% to PAS, 94% to PAS for psychiatric patients. Terminal sedation was accepted by 94% of the members. The main decisional bases drawn on for the answers were personal ethical values, professional experience with palliative care, knowledge of alternative approaches, knowledge of ethical guidelines and of the national legal frame. Conclusions: In sharp contrast to similar surveys conducted in other countries, only a minority of 9.6% of the DGP physicians supported the legalization of EUT. The misuse of medical knowledge for inhumane killing in the Nazi period did not play a relevant role for the respondents’ negative attitude towards EUT. Palliative care needs to be stronger established and promoted within the German health care system in order to improve the quality of end-of-life situations which subsequently is expected to lead to decreasing requests for EUT by terminally ill patients.     

Extending’ euthanasia to those ‘tired of living’ in the Netherlands could jeopardize a well-functioning practice of physicians’ assessment of a patient's request for death

The Dutch Euthanasia Act (EA) took effect in 2002 and regulates the ending of one’s life by a physician at the request of a patient who is suffering unbearably. According to the Dutch Supreme Court, unbearable suffering is a state for which the presence of a medical condition is a strict prerequisite. As a consequence, the Dutch EA has attributed the assessment of unbearable suffering to physicians who evaluate the presence of a medical classifiable disorder. Currently, a debate within the Netherlands questions whether older people, without a medical condition, who value their life as completed, should be granted euthanasia. To concede the autonomy of such a person, the Dutch government intends to create a separate legal framework that regulates this tired of living euthanasia request. This debate is crucial for policy-makers and an international audience because it discusses if a self-directed death of older people, should be implemented in (the current Dutch) euthanasia practice. However, this article argues that the current legal proposal that regulates the tired of living euthanasia request ignores crucial jurisprudence on physicians’ application of the unbearable suffering criterion in practice. Furthermore it points out that this proposal neglects physicians role in guaranteeing a euthanasia practice of due care and that its use of an ethic of absolute autonomy could jeopardize this well-established practice.     

European public acceptance of euthanasia: socio-demographic and cultural factors associated with the acceptance of euthanasia in 33 European countries

In many European countries, the last decade has been marked by an increasing debate about the acceptability and regulation of euthanasia and other end-of-life decisions in medical practice. Growing public sensibility to a 'right to die' for terminally ill patients has been one of the main constituents of these debates. Within this context, we sought to describe and compare acceptance of euthanasia among the general public in 33 European countries. We used the European Values Study data of 1999-2000 with a total of 41125 respondents (63% response rate) in 33 European countries. The main outcome measure concerned the acceptance of euthanasia (defined as 'terminating the life of the incurably sick', rated on a scale from 1 to 10). Results showed that the acceptance of euthanasia tended to be high in some countries (e.g. the Netherlands, Denmark, France, Sweden), while a markedly low acceptance was found in others (e.g. Romania, Malta and Turkey). A multivariate ordinal regression showed that weaker religious belief was the most important factor associated with a higher acceptance; however, there were also socio-demographic differences: younger cohorts, people from non-manual social classes, and people with a higher educational level tended to have a higher acceptance of euthanasia. While religious belief, socio-demographic factors, and also moral values (i.e. the belief in the right to self-determination) could largely explain the differences between countries, our findings suggest that perceptions regarding euthanasia are probably also influenced by national traditions and history (e.g. Germany). Thus, we demonstrated clear cross-national differences with regard to the acceptance of euthanasia, which can serve as an important basis for further debate and research in the specific countries.     

End‐of‐life decision‐making in Belgium,Denmark, Sweden and Switzerland: does place of death make a difference?

OBJECTIVE: To examine differences in end-of-life decision-making in patients dying at home, in a hospital or in a care home. DESIGN: A death certificate study: certifying physicians from representative samples of death certificates, taken between June 2001 and February 2002, were sent questionnaires on the end-of-life decision-making preceding the patient's death. SETTING: Four European countries: Belgium (Flanders), Denmark, Sweden, and Switzerland (German-speaking part). MAIN OUTCOME MEASURES: The incidence of and communication in different end-of-life decisions: physician-assisted death, alleviation of pain/symptoms with a possible life-shortening effect, and non-treatment decisions. RESULTS: Response rates ranged from 59% in Belgium to 69% in Switzerland. The total number of deaths studied was 12 492. Among all non-sudden deaths the incidence of several end-of-life decisions varied by place of death. Physician-assisted death occurred relatively more often at home (0.3-5.1%); non-treatment decisions generally occurred more often in hospitals (22.4-41.3%), although they were also frequently taken in care homes in Belgium (26.0%) and Switzerland (43.1%). Continuous deep sedation, in particular without the administration of food and fluids, was more likely to occur in hospitals. At home, end-of-life decisions were usually more often discussed with patients. The incidence of discussion with other caregivers was generally relatively low at home compared with in hospitals or care homes. CONCLUSION: The results suggest the possibility that end-of-life decision-making is related to the care setting where people die. The study results seem to call for the development of good end-of-life care options and end-of-life communication guidelines in all settings.     

“I don’t need my patients’ opinion to withdraw treatment”: patient preferences at the end-of-life and physician attitudes towards advance directives in England and France

This paper presents the results of a qualitative interview study exploring English and French physicians’ moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the (potential) role of advance directives (ADs) in each context. The interviews focus on (1) problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; (2) decision-making procedures and the participation of proxies/relatives; (3) previous experience with ADs and views on their usefulness; and (4) perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice.     

Chinese seniors' perspectives on end-of-life decisions.

Making end-of-life decisions is a painful and difficult process; one that can be intensified by cultural differences between physicians and their patients. The objective of this study was to examine attitudes of Chinese seniors towards end-of-life decisions. We conducted a qualitative survey in a Chinese community centre in Toronto, Canada. Face-to-face interviews, in Cantonese, were conducted with 40 Chinese seniors 65 years of age or older. Respondents based their end-of-life decision making on the following factors: hope, suffering and burden, the future, emotional harmony, the life cycle, respect for doctors, and the family. Respondents rejected advance directives. Respondents' attitudes toward end-of-life decision making can be understood through the lens of values from Confucianist, Buddhist and Taoist traditions. Health care workers can best achieve quality end-of-life care--and address the cultural differences that may arise--by focusing primarily on understanding the perspectives of patients and their families, and by continually striving for balanced and open communication at all stages of the caregiving process.     

Attitudes towards euthanasia among physicians,nurses and the general public in Finland

The object of this study was to investigate the attitudes of physicians, nurses and the general public to physician-assisted suicide (PAS), active voluntary euthanasia (AVE) and passive euthanasia (PE) in Finland.Respondents received a postal questionnaire to evaluate the acceptability of euthanasia in five scenarios, which were imaginary patient cases. Age, severity of pain and prognosis of the disease were presented as background factors in these scenarios.This work was carried out in Finland in 1998.The respondents include a random selection of 814 physicians (506 responded, 62%), 800 nurses (582 responded, 68%) and 1000 representatives of the general public (587 responded, 59%).Thirty-four percent of the physicians, 46% of the nurses and 50% of the general public agreed that euthanasia would be acceptable in some situations. Of the scenarios, PE was most often considered acceptable in cases of severe dementia (physicians 88%, nurses 79% and general public 64%). In the same scenario, 8% of physicians, 23% of nurses and 48% of general public accepted AVE. In the scenario of an incurable cancer, 20% of the physicians, 34% of the nurses and 42% of the general public accepted PAS. All forms of euthanasia were generally more acceptable in older, than in younger, scenario patients.This paper conclude that PE was largely accepted among Finnish medical professionals and the general public. Only a minority favored AVE and PAS.     

Attitudes, sociodemographic characteristics, and actual end-of-life decisions of physicians in Flanders, Belgium.

AIM: To study the effect of sociodemographic and attitudinal determinants of physicians making end-of-life decisions (ELDs). METHODS: The physicians having signed 489 consecutive death certificates in the city of Hasselt (Belgium) were sent an anonymous questionnaire regarding their ELDs and another on their attitudes toward voluntary euthanasia (EUTH) and physician-assisted suicide (PAS). RESULTS: 55% response rate. Nontreatment decisions occurred in 16.7% of all death cases; in 16%, there was potentially life-shortening use of drugs to alleviate pain and symptoms; in 4.8% of cases, death was deliberately induced by lethal drugs, including EUTH, PAS, and life termination without explicit request by the patient. In their attitudes toward EUTH and PAS, the 92 responding physicians clustered into 3 groups: positive and rule oriented, positive rule-adverse, and opposed. Cluster group membership, commitment to life stance, years of professional experience, and gender were each associated with specific ELD-making patterns.     

Hospice and primary care physicians: attitudes,knowledge, and barriers

Underuse of hospice services is a significant problem in the United States. Primary care physicians constitute an increasing referral base and have been hypothesized to be important barriers to increased use. We conducted a mail survey of 131 primary care physicians (overall response rate of 72 percent), examining their attitudes toward, knowledge about, and perceived benefits and barriers to hospice care. Physicians demonstrated very favorable attitudes towards hospice. They had correct knowledge about most aspects of hospice, and, where they did not, they were far more likely to be uncertain than erroneous. Primary care physicians perceived many benefits to hospice care and identified patient and family readiness as the major barrier to earlier hospice referrals. A significant subgroup had concerns about problems in interacting with hospices. There were very few differences between family practitioners and general internists. These findings have many implications for directing collaborative efforts between primary care physicians and hospices to improve end-of-life care.     

How the mass media report social statistics: A case study concerning research on end-of-life decisions

The issue of whether it is right to be concerned about the accuracy with which mass media report social scientific research is explored through a detailed case study of media reporting of two surveys of UK doctors’ end-of-life decision-making. Data include press releases, emails and field notes taken during periods of media interest supplemented by a collection of print and broadcast media reports. The case study contributes to existing knowledge about the ways in which mass media establish, exaggerate and otherwise distort the meaning of statistical findings. Journalists ignored findings that did not fit into existing media interest in the ‘assisted dying’ story and were subject to pressure from interest groups concerned to promote their own interpretations and viewpoints. Rogue statistics mutated as they were set loose from their original research report context and were ‘laundered’ as they passed from one media report to another. Yet media accounts of the research, fuelling an already heated public debate about ethical issues in end-of-life care, arguably acted as a conduit for introducing new considerations into this debate, such as the role played by sedation at the end of life, the extent to which euthanasia is practiced outside the law, and the extent of medical opposition to the legalisation of assisted dying. The expectation that accuracy and comprehensiveness should be the sole criteria for judging journalists’ reports is, finally, considered to be unrealistic and it is argued that social scientists need to understand and adapted to the conditions under which mass media reporting operates if they are to succeed in introducing the findings of social research into public debates.     

New research on the practice, reporting and reviewing of euthanasia and other medical end-of-life decisions, 2001/2002

In the second half of 2001, an extensive study will start which will evaluate the review procedure for euthanasia in the Netherlands. Since the end of 1998, euthanasia has to be reviewed by regional review committees, which include a physician and an ethicist, in addition to a legal expert. The aim of this study is to examine whether the reporting procedure meets the aim and whether there are any points which require improvement. This study follows on from those carried out in 1990/1991 and 1995/1996, which investigated euthanasia and other medical end-of-life decisions (assisted suicide, termination of life without the patient's explicit request, treatment of pain and symptoms with a possible life-shortening effect, and forgoing potentially life-prolonging treatment). The study consists of an analysis of cases of death (in which the numbers and nature of various medical end-of-life decisions will be established), physician interviews (to gain insight into the context in which medical end-of-life decisions are made), a study of reported cases (to give an overview of doctors' experiences with the review committees), and a study carried out amongst the general public (around 1,500 Dutch adults will be given a written questionnaire about their opinions concerning medical end-of-life decisions and the reporting procedure). In addition to this Dutch study, a European study subsidized by the European Commission is being carried out which will examine attitudes and experiences regarding medical end-of-life decisions in six European countries (Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland). This will, for the first time, enable a true comparison to be made between the Netherlands and other countries in terms of euthanasia and other medical end-of-life decisions.     

Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey

ABSTRACT: 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.     

Insight into end-of-life decisions in newborns in Flanders, Belgium

In the Netherlands, as in many other European countries, the majority of deaths in newborns are preceded by end-of-life decisions. In most cases, these decisions concern the withholding or withdrawing of treatment. Drugs with a potential life-shortening effect are often prescribed in the terminal phase of treatment of newborns to alleviate their suffering. The use of lethal drugs in order to deliberately end the life of newborns with a very poor prognosis and intractable severe suffering has been reported by Dutch paediatricians. Recently published data about end-of-life decisions in newborns in Flanders have shown that paediatricians in Flanders also consider the deliberate ending of life in newborns and young infants to be an acceptable option in exceptional circumstances. Real insight into the existing practice remains limited because the deliberate ending of life legally qualifies as murder in both countries. Few cases are reported because of the physician's fear of prosecution. Physicians in Flanders and in the Netherlands have pleaded for a different system of control of the deliberate ending of life in newborns. The Dutch government has recently announced the instalment of a multidisciplinary committee of experts to whom all cases must be reported. The advice of the committee to the prosecuting authorities will be crucial. It is expected that this change will increase the willingness to report cases.     

Pressure during decision making of continuous sedation in end-of-life situations in Dutch general practice

ABSTRACT: BACKGROUND: Little is known about pressure from patients or relatives on physician's decision making of continuous palliative sedation. We aim to describe experienced pressure by general practitioners (GPs) in cases of continuous sedation after the introduction of the Dutch practice guideline, using a questionnaire survey. METHODS: A sample of 918 Dutch GPs were invited to fill out a questionnaire about their last patient under continuous sedation. Cases in which GPs experienced pressure from the patient, relatives or other persons were compared to those without pressure. RESULTS: 399 of 918 invite GPs (43%) returned the questionnaire and 250 provided detailed information about their most recent case of continuous sedation. Forty-one GPs (16%) indicated to have experienced pressure from the patient, relatives or colleagues. In GPs younger than 50, guideline knowledge was not related to experienced pressure, whereas in older GPs, 15% with and 36% without guideline knowledge reported pressure. GPs experienced pressure more often when patients had psychological symptoms (compared to physical symptoms only) and when patients had a longer estimated life expectancy. A euthanasia request of the patient coincided with a higher prevalence of pressure for GPs without, but not for GPs with previous experience with euthanasia. GPs who experienced pressure had consulted a palliative consultation team more often than GPs who did not experience pressure. CONCLUSION: One in six GPs felt pressure from patients or relatives to start sedation. This pressure was related to guideline knowledge, especially in older GPs, longer life expectancy and the presence of a euthanasia request, especially for GPs without previous experience of euthanasia.     

Terminal sedation: consultation with a second physician as is the case in euthanasia and assisted suicide

In terminally-ill patients in the Netherlands deep sedation by means of a continuous subcutaneous infusion with midazolam occurs more frequently than euthanasia and assisted suicide. Deep terminal sedation is applied to relieve symptoms during the phase of dying, but in contrast to euthanasia and assisted suicide, does not hasten death. In three terminally-ill patients, a 65-year-old man suffering from pulmonary carcinoma, a 94-year-old woman with general malaise, nausea and anorexia, and a 79-year-old woman in the final stage of ovarian carcinoma, a general-practitioner advisor was consulted about an end-of-life decision--deep terminal sedation versus euthanasia or assisted suicide. The first two patients were given deep sedation until death, in both cases a day and a half later. The third patient's request for euthanasia was considered to meet the legal criteria for euthanasia. Compliance with the Dutch statutory criteria for due care in euthanasia and assisted suicide might also be helpful when deciding about terminal deep sedation, but the role and responsibility of the attending physician may differ. However, the radical effects of sedation on the terminally-ill patient and the rapid changes in the clinical situation of the patient when the decision to sedate is taken, both emphasize the need for consultation with another physician.     

Une mort tres douce

Summary This study considers the range of thinking about end-of-life decisions (ELD) in France from a Dutch point of view, taking a small number of interviews with important French opinion-leaders as a basis. Until today, end-of-life care in France has been clouded with uncertainty pending the enactment of more specific definitions and regulations. French physicians could face a dilemma in treating a dying patient, caught between an official ban on ELD and a professional obligation to treat cases individually. The practical consequence of this climate is a lack of accountability of the French physician towards colleagues and patients. Rationalistic, paternalistic, and religious traditions have been obstructive to the adoption of regulatory reforms. In November 2004, Parliament accepted a law proposal by which the practice of the withholding and withdrawal of life-saving therapies would become more transparent, which would diminish the physician’s fear of legal persecution. This proposal was then converted into law by the Senate. In the Netherlands, euthanasia – the active termination of life – is legal and regulated according to specific criteria. The Dutch approach has been shaped by an Anglo-Saxon emphasis on individual autonomy, and conforms to a broad preference in Dutch society to disclose and regulate controversial activities rather than to tolerate them sub rosa. As the Dutch regulations have been enacted, reporting rates – but not euthanasia cases – have risen. Compliance with the criteria and doctor–patient communication have been high. The French vigilance of professional autonomy provides a valuable example to the Dutch. The Dutch, in return, offer the French concrete examples for ELD policy. J.J.M. van Delden is Professor of Medical Ethics at the University Medical Center in Utrecht, the Netherlands.