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1.  Nationwide survey to evaluate the decision-making process in euthanasia requests in Belgium: do specifically trained 2nd physicians improve quality of consultation? 
Background
Following the 2002 enactment of the Belgian law on euthanasia, which requires the consultation of an independent second physician before proceeding with euthanasia, the Life End Information Forum (LEIF) was founded which provides specifically trained physicians who can act as mandatory consultants in euthanasia requests. This study assesses quality of consultations in Flanders and Brussels and compares these between LEIF and non-LEIF consultants.
Methods
A questionnaire was sent in 2009 to a random sample of 3,006 physicians in Belgium from specialties likely involved in the care of dying patients. Several questions about the last euthanasia request of one of their patients were asked. As LEIF serves the Flemish speaking community (i.e. region of Flanders and the bilingual Brussels Capital Region) and no similar counterpart is present in Wallonia, analyses were limited to Flemish speaking physicians in Flanders and Brussels.
Results
Response was 34%. Of the 244 physicians who indicated having received a euthanasia request seventy percent consulted a second physician in their last request; in 30% this was with a LEIF physician. Compared to non-LEIF physicians, LEIF physicians were more often not a colleague (69% vs 42%) and not a co-attending physician (89% vs 66%). They tended to more often discuss the request with the attending physician (100% vs 95%) and with the family (76% vs 69%), and also more frequently helped the attending physician with performing euthanasia (44% vs 24%). No significant differences were found in the extent to which they talked to the patient (96% vs 93%) and examined the patient file (94% vs 97%).
Conclusion
In cases of explicit euthanasia requests in Belgium, the consultation procedure of another physician by the attending physician is not optimal and can be improved. Training and putting at disposal consultants through forums such as LEIF seems able to improve this situation. Adding stipulations in the law about the necessary competencies and tasks of consulting physicians may additionally incite improvement. Irrespective of whether euthanasia is a legal practice within a country, similar services may prove useful to also improve quality of consultations in various other difficult end-of-life decision-making situations.
doi:10.1186/1472-6963-14-307
PMCID: PMC4114442  PMID: 25030375
Euthanasia; Consultation; Referral practice; Terminal care
2.  Role and Involvement of Life End Information Forum Physicians in Euthanasia and Other End-of-Life Care Decisions in Flanders, Belgium 
Health Services Research  2009;44(6):2180-2192.
Objective
To describe role and involvement of Life End Information Forum (LEIF) physicians in end-of-life care decisions and euthanasia in Flanders.
Study Design
All 132 LEIF physicians in Belgium received a questionnaire inquiring about their activities in the past year, and their end-of-life care training and experience.
Principal Findings
Response rate was 75 percent. Most respondents followed substantive training in end-of-life care. In 1 year, LEIF physicians were contacted 612 times for consultations in end-of-life decisions, of which 355 concerned euthanasia requests eventually resulting in 221 euthanasia cases. LEIF physicians also gave information about various end-of-life issues (including palliative care) to patients and colleagues.
Conclusions
LEIF physicians provide a forum for information and advice for physicians and patients. A similar health service providing support to physicians for all end-of-life decisions could also be beneficial for countries without a euthanasia law.
doi:10.1111/j.1475-6773.2009.01042.x
PMCID: PMC2796321  PMID: 19780854
Consultation; euthanasia; end-of-life decisions
3.  Euthanasia in patients dying at home in Belgium: interview study on adherence to legal safeguards 
The British Journal of General Practice  2010;60(573):e163-e170.
Background
Euthanasia became legal in Belgium in 2002. Physicians must adhere to legal due care requirements when performing euthanasia; for example, consulting a second physician and reporting each euthanasia case to the Federal Review Committee.
Aim
To study the adherence and non-adherence of GPs to legal due care requirements for euthanasia among patients dying at home in Belgium and to explore possible reasons for non-adherence.
Design of study
Large scale, retrospective study.
Setting
General practice in Belgium.
Method
A retrospective mortality study was performed in 2005–2006 using the nationwide Belgian Sentinel Network of General Practitioners. Each week GPs reported medical end-of-life decisions taken in all non-sudden deaths of patients in their practice. GP interviews were conducted for each euthanasia case occurring at home.
Results
Interviews were conducted for nine of the 11 identified euthanasia cases. Requirements concerning the patient's medical condition were met in all cases. Procedural requirements such as consultation of a second physician were sometimes ignored. Euthanasia cases were least often reported (n = 4) when the physician did not regard the decision as euthanasia, when only opioids were used to perform euthanasia, or when no second physician was consulted. Factors that may contribute to explaining non-adherence to the euthanasia law included: being unaware of which practices are considered to be euthanasia; insufficient knowledge of the euthanasia law; and the fact that certain procedures are deemed burdensome.
Conclusion
Substantive legal due care requirements for euthanasia concerning the patient's request for euthanasia and medical situation were almost always met by GPs in euthanasia cases. Procedural consultation and reporting requirements were not always met.
doi:10.3399/bjgp10X483940
PMCID: PMC2845507  PMID: 20353662
euthanasia; health policy; terminal care
4.  Reporting of euthanasia in medical practice in Flanders, Belgium: cross sectional analysis of reported and unreported cases 
Objectives To estimate the rate of reporting of euthanasia cases to the Federal Control and Evaluation Committee and to compare the characteristics of reported and unreported cases of euthanasia.
Design Cross sectional analysis.
Setting Flanders, Belgium.
Participants A stratified at random sample was drawn of people who died between 1 June 2007 and 30 November 2007. The certifying physician of each death was sent a questionnaire on end of life decision making in the death concerned.
Main outcome measures The rate of euthanasia cases reported to the Federal Control and Evaluation Committee; physicians’ reasons for not reporting cases of euthanasia; the relation between reporting and non-reporting and the characteristics of the physician and patient; the time by which life was shortened according to the physician; the labelling of the end of life decision by the physician involved; and differences in characteristics of due care between reported and unreported euthanasia cases.
Results The survey response rate was 58.4% (3623/6202 eligible cases). The estimated total number of cases of euthanasia in Flanders in 2007 was 1040 (95% CI 970 to 1109), thus the incidence of euthanasia was estimated as 1.9% of all deaths (95% CI 1.6% to 2.3%). Approximately half (549/1040 (52.8%, 95% CI 43.9% to 60.5%)) of all estimated cases of euthanasia were reported to the Federal Control and Evaluation Committee. Physicians who perceived their case as euthanasia reported it in 93.1% (67/72) of cases. Cases of euthanasia were reported less often when the time by which life was shortened was less than one week compared with when the perceived life shortening was greater (37.3% v 74.1%; P<0.001). Unreported cases were generally dealt with less carefully than reported cases: a written request for euthanasia was more often absent (87.7% v 17.6% verbal request only; P<0.001), other physicians and caregivers specialised in palliative care were consulted less often (54.6% v 97.5%; 33.0% v 63.9%; P<0.001 for both), the life ending act was more often performed with opioids or sedatives (92.1% v 4.4%; P<0.001), and the drugs were more often administered by a nurse (41.3% v 0.0%; P<0.001).
Conclusions One out of two euthanasia cases is reported to the Federal Control and Evaluation Committee. Most non-reporting physicians do not perceive their act as euthanasia. Countries debating legalisation of euthanasia should simultaneously consider developing a policy facilitating the due care and reporting obligations of physicians.
doi:10.1136/bmj.c5174
PMCID: PMC2950259  PMID: 20923842
5.  News media coverage of euthanasia: a content analysis of Dutch national newspapers 
BMC Medical Ethics  2013;14:11.
Background
The Netherlands is one of the few countries where euthanasia is legal under strict conditions. This study investigates whether Dutch newspaper articles use the term ‘euthanasia’ according to the legal definition and determines what arguments for and against euthanasia they contain.
Methods
We did an electronic search of seven Dutch national newspapers between January 2009 and May 2010 and conducted a content analysis.
Results
Of the 284 articles containing the term ‘euthanasia’, 24% referred to practices outside the scope of the law, mostly relating to the forgoing of life-prolonging treatments and assistance in suicide by others than physicians. Of the articles with euthanasia as the main topic, 36% described euthanasia in the context of a terminally ill patient, 24% for older persons, 16% for persons with dementia, and 9% for persons with a psychiatric disorder. The most frequent arguments for euthanasia included the importance of self-determination and the fact that euthanasia contributes to a good death. The most frequent arguments opposing euthanasia were that suffering should instead be alleviated by better care, that providing euthanasia can be disturbing, and that society should protect the vulnerable.
Conclusions
Of the newspaper articles, 24% uses the term ‘euthanasia’ for practices that are outside the scope of the euthanasia law. Typically, the more unusual cases are discussed. This might lead to misunderstandings between citizens and physicians. Despite the Dutch legalisation of euthanasia, the debate about its acceptability and boundaries is ongoing and both sides of the debate are clearly represented.
doi:10.1186/1472-6939-14-11
PMCID: PMC3599791  PMID: 23497284
Euthanasia; Media; Content analysis
6.  Reporting of euthanasia and physician-assisted suicide in the Netherlands: descriptive study 
BMC Medical Ethics  2009;10:18.
Background
An important principle underlying the Dutch Euthanasia Act is physicians' responsibility to alleviate patients' suffering. The Dutch Act states that euthanasia and physician-assisted suicide are not punishable if the attending physician acts in accordance with criteria of due care. These criteria concern the patient's request, the patient's suffering (unbearable and hopeless), the information provided to the patient, the presence of reasonable alternatives, consultation of another physician and the applied method of ending life. To demonstrate their compliance, the Act requires physicians to report euthanasia to a review committee. We studied which arguments Dutch physicians use to substantiate their adherence to the criteria and which aspects attract review committees' attention.
Methods
We examined 158 files of reported euthanasia and physician-assisted suicide cases that were approved by the review committees. We studied the physicians' reports and the verdicts of the review committees by using a checklist.
Results
Physicians reported that the patient's request had been well-considered because the patient was clear-headed (65%) and/or had repeated the request several times (23%). Unbearable suffering was often substantiated with physical symptoms (62%), function loss (33%), dependency (28%) or deterioration (15%). In 35%, physicians reported that there had been alternatives to relieve patients' suffering which were refused by the majority. The nature of the relationship with the consultant was sometimes unclear: the consultant was reported to have been an unknown colleague (39%), a known colleague (21%), otherwise (25%), or not clearly specified in the report (24%). Review committees relatively often scrutinized the consultation (41%) and the patient's (unbearable) suffering (32%); they had few questions about possible alternatives (1%).
Conclusion
Dutch physicians substantiate their adherence to the criteria in a variable way with an emphasis on physical symptoms. The information they provide is in most cases sufficient to enable adequate review. Review committees' control seems to focus on (unbearable) suffering and on procedural issues.
doi:10.1186/1472-6939-10-18
PMCID: PMC2781018  PMID: 19860873
7.  Legalizing euthanasia or assisted suicide: the illusion of safeguards and controls 
Current Oncology  2011;18(2):e38-e45.
Euthanasia or assisted suicide—and sometimes both—have been legalized in a small number of countries and states. In all jurisdictions, laws and safeguards were put in place to prevent abuse and misuse of these practices. Prevention measures have included, among others, explicit consent by the person requesting euthanasia, mandatory reporting of all cases, administration only by physicians (with the exception of Switzerland), and consultation by a second physician.
The present paper provides evidence that these laws and safeguards are regularly ignored and transgressed in all the jurisdictions and that transgressions are not prosecuted. For example, about 900 people annually are administered lethal substances without having given explicit consent, and in one jurisdiction, almost 50% of cases of euthanasia are not reported. Increased tolerance of transgressions in societies with such laws represents a social “slippery slope,” as do changes to the laws and criteria that followed legalization. Although the initial intent was to limit euthanasia and assisted suicide to a last-resort option for a very small number of terminally ill people, some jurisdictions now extend the practice to newborns, children, and people with dementia. A terminal illness is no longer a prerequisite. In the Netherlands, euthanasia for anyone over the age of 70 who is “tired of living” is now being considered. Legalizing euthanasia and assisted suicide therefore places many people at risk, affects the values of society over time, and does not provide controls and safeguards.
PMCID: PMC3070710  PMID: 21505588
Euthanasia; physician-assisted suicide
8.  Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey 
BMC Public Health  2012;12:447.
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.
doi:10.1186/1471-2458-12-447
PMCID: PMC3489592  PMID: 22708727
Ageism; Age inequalities; End of life; End-of-life decisions; Slippery slope; Euthanasia; Palliative care; Belgium
9.  The role of nurses in physician-assisted deaths in Belgium 
Background
Belgium’s law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient’s explicit request (euthanasia) or without an explicit request. We also examined factors associated with these deaths.
Methods
In 2007, we surveyed 1678 nurses who, in an earlier survey, had reported caring for one or more patients who received a potential life-ending decision within the year before the survey. Eligible nurses were surveyed about their most recent case.
Results
The response rate was 76%. Overall, 128 nurses reported having cared for a patient who received euthanasia and 120 for a patient who received life-ending drugs without his or her explicit request. Respectively, 64% (75/117) and 69% (81/118) of these nurses were involved in the physician’s decision-making process. More often this entailed an exchange of information on the patient’s condition or the patient’s or relatives’ wishes (45% [34/117] and 51% [41/118]) than sharing in the decision-making (24% [18/117] and 31% [25/118]). The life-ending drugs were administered by the nurse in 12% of the cases of euthanasia, as compared with 45% of the cases of assisted death without an explicit request. In both types of assisted death, the nurses acted on the physician’s orders but mostly in the physician’s absence. Factors significantly associated with a nurse administering the life-ending drugs included being a male nurse working in a hospital (odds ratio [OR] 40.07, 95% confidence interval [CI] 7.37–217.79) and the patient being over 80 years old (OR 5.57, 95% CI 1.98–15.70).
Interpretation
By administering the life-ending drugs in some of the cases of euthanasia, and in almost half of the cases without an explicit request from the patient, the nurses in our study operated beyond the legal margins of their profession.
doi:10.1503/cmaj.091881
PMCID: PMC2882450  PMID: 20479043
10.  Physician-assisted deaths under the euthanasia law in Belgium: a population-based survey 
Background
Legalization of euthanasia and physician-assisted suicide has been heavily debated in many countries. To help inform this debate, we describe the practices of euthanasia and assisted suicide, and the use of life-ending drugs without an explicit request from the patient, in Flanders, Belgium, where euthanasia is legal.
Methods
We mailed a questionnaire regarding the use of life-ending drugs with or without explicit patient request to physicians who certified a representative sample (n = 6927) of death certificates of patients who died in Flanders between June and November 2007.
Results
The response rate was 58.4%. Overall, 208 deaths involving the use of life-ending drugs were reported: 142 (weighted prevalence 2.0%) were with an explicit patient request (euthanasia or assisted suicide) and 66 (weighted prevalence 1.8%) were without an explicit request. Euthanasia and assisted suicide mostly involved patients less than 80 years of age, those with cancer and those dying at home. Use of life-ending drugs without an explicit request mostly involved patients 80 years of older, those with a disease other than cancer and those in hospital. Of the deaths without an explicit request, the decision was not discussed with the patient in 77.9% of cases. Compared with assisted deaths with the patient’s explicit request, those without an explicit request were more likely to have a shorter length of treatment of the terminal illness, to have cure as a goal of treatment in the last week, to have a shorter estimated time by which life was shortened and to involve the administration of opioids.
Interpretation
Physician-assisted deaths with an explicit patient request (euthanasia and assisted suicide) and without an explicit request occurred in different patient groups and under different circumstances. Cases without an explicit request often involved patients whose diseases had unpredictable end-of-life trajectories. Although opioids were used in most of these cases, misconceptions seem to persist about their actual life-shortening effects.
doi:10.1503/cmaj.091876
PMCID: PMC2882449  PMID: 20479044
11.  The ethical and legal aspects of palliative sedation in severely brain-injured patients: a French perspective 
To fulfill their crucial duty of relieving suffering in their patients, physicians may have to administer palliative sedation when they implement treatment-limitation decisions such as the withdrawal of life-supporting interventions in patients with poor prognosis chronic severe brain injury. The issue of palliative sedation deserves particular attention in adults with serious brain injuries and in neonates with severe and irreversible brain lesions, who are unable to express pain or to state their wishes. In France, treatment limitation decisions for these patients are left to the physicians. Treatment-limitation decisions are made collegially, based on the presence of irreversible brain lesions responsible for chronic severe disorders of consciousness. Before these decisions are implemented, they are communicated to the relatives. Because the presence and severity of pain cannot be assessed in these patients, palliative analgesia and/or sedation should be administered. However, palliative sedation is a complex strategy that requires safeguards to prevent a drift toward hastening death or performing covert euthanasia. In addition to the law on patients' rights at the end of life passed in France on April 22, 2005, a recent revision of Article 37 of the French code of medical ethics both acknowledges that treatment-limitation decisions and palliative sedation may be required in patients with severe brain injuries and provides legal and ethical safeguards against a shift towards euthanasia. This legislation may hold value as a model for other countries where euthanasia is illegal and for countries such as Belgium and Netherlands where euthanasia is legal but not allowed in patients incapable of asking for euthanasia but in whom a treatment limitation decision has been made.
doi:10.1186/1747-5341-6-4
PMCID: PMC3041748  PMID: 21303504
12.  Nurses' views on their involvement in euthanasia: a qualitative study in Flanders (Belgium) 
Journal of Medical Ethics  2006;32(4):187-192.
Background
Although nurses worldwide are confronted with euthanasia requests from patients, the views of palliative care nurses on their involvement in euthanasia remain unclear.
Objectives
In depth exploration of the views of palliative care nurses on their involvement in the entire care process surrounding euthanasia.
Design
A qualitative Grounded Theory strategy was used.
Setting and participants
In anticipation of new Belgian legislation on euthanasia, we conducted semistructured interviews with 12 nurses working in a palliative care setting in the province of Vlaams‐Brabant (Belgium).
Results
Palliative care nurses believed unanimously that they have an important role in the process of caring for a patient who requests euthanasia, a role that is not limited to assisting the physician when he is administering life terminating drugs. Nurses' involvement starts when the patient requests euthanasia and ends with supporting the patient's relatives and healthcare colleagues after the potential life terminating act. Nurses stressed the importance of having an open mind and of using palliative techniques, also offering a contextual understanding of the patient's request in the decision making process. Concerning the actual act of performing euthanasia, palliative care nurses saw their role primarily as assisting the patient, the patient's family, and the physician by being present, even if they could not reconcile themselves with actually performing euthanasia.
Conclusions
Based on their professional nursing expertise and unique relationship with the patient, nurses participating as full members of the interdisciplinary expert team are in a key position to provide valuable care to patients requesting euthanasia.
doi:10.1136/jme.2005.011783
PMCID: PMC2565778  PMID: 16574869
euthanasia; palliative care; nursing; qualitative research; Grounded Theory; ethics
13.  Questions and Answers on the Belgian Model of Integral End-of-Life Care: Experiment? Prototype? 
Journal of Bioethical Inquiry  2014;11:507-529.
This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.
doi:10.1007/s11673-014-9554-z
PMCID: PMC4263821  PMID: 25124983
Palliative care; Euthanasia; Death and dying; Belgium
14.  Euthanasia and other end-of-life decisions: a mortality follow-back study in Belgium 
BMC Public Health  2009;9:79.
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.
doi:10.1186/1471-2458-9-79
PMCID: PMC2660906  PMID: 19272153
15.  Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia 
BMC Medicine  2008;6:4.
Background
In this study we investigated (a) to what extent physicians have experience with performing a range of end-of-life decisions (ELDs), (b) if they have no experience with performing an ELD, would they be willing to do so under certain conditions and (c) which background characteristics are associated with having experience with/or being willing to make such ELDs.
Methods
An anonymous questionnaire was sent to 16,486 physicians from specialities in which death is common: Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland.
Results
The response rate differed between countries (39–68%). The experience of foregoing life-sustaining treatment ranged between 37% and 86%: intensifying the alleviation of pain or other symptoms while taking into account possible hastening of death between 57% and 95%, and experience with deep sedation until death between 12% and 46%. Receiving a request for hastening death differed between 34% and 71%, and intentionally hastening death on the explicit request of a patient between 1% and 56%.
Conclusion
There are differences between countries in experiences with ELDs, in willingness to perform ELDs and in receiving requests for euthanasia or physician-assisted suicide. Foregoing treatment and intensifying alleviation of pain and symptoms are practiced and accepted by most physicians in all countries. Physicians with training in palliative care are more inclined to perform ELDs, as are those who attend to higher numbers of terminal patients. Thus, this seems not to be only a matter of opportunity, but also a matter of attitude.
doi:10.1186/1741-7015-6-4
PMCID: PMC2277432  PMID: 18269735
16.  Involuntary euthanasia of severely ill newborns: is the Groningen Protocol really dangerous? 
Hippokratia  2014;18(3):193-203.
Advances in medicine can reduce active euthanasia of newborns with severe anomalies or unusual prematurity, but they cannot eliminate it. In the Netherlands, voluntary active euthanasia among adults and adolescents has been allowed since 2002, when the so-called Groningen Protocol (GP) was formulated as an extension of the law on extremely premature and severely ill newborns. It is maintained that, at bioethical level, it serves the principle of beneficence. Other European countries do not accept the GP, including Belgium. Admissibility of active euthanasia is a necessary, though inadequate, condition for acceptance of the GP. Greece generally prohibits euthanasia, although the legal doctrine considers some of the forms of euthanasia permissible, but not active or involuntary euthanasia. The wide acceptance of passive newborns euthanasia, especially when the gestational age of the newborns is 22-25 weeks ("grey zone"), admissibility of practices within the limits between active and passive euthanasia (e.g., withholding/withdrawing), of "indirect active euthanasia" and abortion of the late fetus, the tendency to accept after-birth-abortion (infanticide) in the bioethical theory, the lower threshold for application of withdrawing in neonatal intensive care units compared with pediatric intensive care units, all the above advocate wider acceptance of the GP. However, the GP paves the way for a wide application of involuntary (or pseudo-voluntary) euthanasia (slippery slope) and contains some ambiguous concepts and requirements (e.g., "unbearable suffering"). It is suggested that the approach to the sensitive and controversial ethical dilemmas concerning the severely ill newborns is done not through the GP, but rather, through a combination of virtue bioethics (especially in the countries of the so-called "Mediterranean bioethical zone") and of the principles of principlism which is enriched, however, with the "principle of mutuality" (enhancement of all values and principles, especially with the principles of "beneficence" and "justice"), in order to achieve the "maximal" bioethical approach, along with the establishment of circumstances and alternatives that minimize or eliminate the relevant bioethical dilemmas and conflicts between the fundamental principles. Thus, the most appropriate/fairest choices are made (by trained parents and physicians), considering all interests involved as much as possible. Hippokratia 2014; 18 (3): 196-203.
PMCID: PMC4309136
Active euthanasia; newborn; neonatal; Groningen Protocol; bioethics; virtue ethics; principlism; beneficence; withholding; withdrawing
17.  Using continuous sedation until death for cancer patients: A qualitative interview study of physicians’ and nurses’ practice in three European countries 
Palliative Medicine  2015;29(1):48-59.
Background:
Extensive debate surrounds the practice of continuous sedation until death to control refractory symptoms in terminal cancer care. We examined reported practice of United Kingdom, Belgian and Dutch physicians and nurses.
Methods:
Qualitative case studies using interviews.
Setting:
Hospitals, the domestic home and hospices or palliative care units.
Participants:
In all, 57 Physicians and 73 nurses involved in the care of 84 cancer patients.
Results:
UK respondents reported a continuum of practice from the provision of low doses of sedatives to control terminal restlessness to rarely encountered deep sedation. In contrast, Belgian respondents predominantly described the use of deep sedation, emphasizing the importance of responding to the patient’s request. Dutch respondents emphasized making an official medical decision informed by the patient’s wish and establishing that a refractory symptom was present. Respondents employed rationales that showed different stances towards four key issues: the preservation of consciousness, concerns about the potential hastening of death, whether they perceived continuous sedation until death as an ‘alternative’ to euthanasia and whether they sought to follow guidelines or frameworks for practice.
Conclusion:
This qualitative analysis suggests that there is systematic variation in end-of-life care sedation practice and its conceptualization in the United Kingdom, Belgium and the Netherlands.
doi:10.1177/0269216314543319
PMCID: PMC4266692  PMID: 25062816
Refractory symptoms; continuous sedation until death; qualitative research; palliative care; palliative sedation; end-of-life care
18.  Voluntary euthanasia in Northern Ireland: general practitioners' beliefs, experiences, and actions. 
BACKGROUND: There has been much recent interest in the press and among the profession on the subject of euthanasia and physician-assisted suicide. The BMA recently conducted a 'consensus conference' over the internet to collect views on physician-assisted suicide. Any surveys to date have addressed a variety of specialties; however, no recent surveys have looked at general practitioner (GP) attitudes and experiences. AIM: To explore the attitudes of GPs in Northern Ireland towards the issue of patient requests for euthanasia, their nature, and doctors' experiences of such requests. METHOD: An anonymous, confidential postal survey of all (1053) GP principals in Northern Ireland. RESULTS: Seventy per cent of responders believe that passive euthanasia is both morally and ethically acceptable. Fewer (49%) would be prepared to take part in passive euthanasia. However, over 70% of physicians responding consider physician-assisted suicide and voluntary active euthanasia to be wrong. Thirty per cent of responders have received requests from patients for euthanasia in the past five years. One hundred and seven doctors gave information about these requests. Thirty-nine out of 54 patient requests for passive euthanasia had been complied with, as had one of 19 requests for physician-assisted suicide and four out of 38 patient requests for active euthanasia. Doctors perceived the main reasons why patients sought euthanasia was because of fear of loss of dignity and fear of being a burden to others. CONCLUSIONS: While the majority of GPs support passive euthanasia, they, in common with those who approve of assisted suicide and active euthanasia, often express a reluctance to take part in such actions. This may reflect the moral, legal, and emotional dilemmas doctors encounter when facing end-of-life decisions.
PMCID: PMC1313819  PMID: 11127168
19.  A protocol for consultation of another physician in cases of euthanasia and assisted suicide 
Journal of Medical Ethics  2001;27(5):331-337.
Objective—Consultation of another physician is an important method of review of the practice of euthanasia. For the project "support and consultation in euthanasia in Amsterdam" which is aimed at professionalising consultation, a protocol for consultation was developed to support the general practitioners who were going to work as consultants and to ensure uniformity.
Participants—Ten experts (including general practitioners who were experienced in euthanasia and consultation, a psychiatrist, a social geriatrician, a professor in health law and a public prosecutor) and the general practitioners who were going to use the protocol.
Evidence—There is limited literature on consultation: discursive articles and empirical studies describing the practice of euthanasia.
Consensus—An initial draft on the basis of the literature was commented on by the experts and general practitioners in two rounds. Finally, the protocol was amended after it had been used during the training of consultants.
Conclusions—The protocol differentiates between steps that are necessary in a consultation and steps that are recommended. Guidelines about four important aspects of consultation were given: independence, expertise, tasks and judgment of the consultant. In 97% of 109 consultations in which the protocol was used the consultant considered the protocol to be useful to a greater or lesser extent. Although this protocol was developed locally, it also employs universal principles. Therefore it can be of use in the development of consultation elsewhere.
Key Words: Euthanasia • assisted suicide • consultation • quality assurance • protocol
doi:10.1136/jme.27.5.331
PMCID: PMC1733456  PMID: 11579191
20.  Should euthanasia be legal? An international survey of neonatal intensive care units staff 
Objective: To present the views of a representative sample of neonatal doctors and nurses in 10 European countries on the moral acceptability of active euthanasia and its legal regulation.
Design: A total of 142 neonatal intensive care units were recruited by census (in the Netherlands, Sweden, Hungary, and the Baltic countries) or random sampling (in France, Germany, Italy, Spain, and the United Kingdom); 1391 doctors and 3410 nurses completed an anonymous questionnaire (response rates 89% and 86% respectively).
Main outcome measure: The staff opinion that the law in their country should be changed to allow active euthanasia "more than now".
Results: Active euthanasia appeared to be both acceptable and practiced in the Netherlands, France, and to a lesser extent Lithuania, and less acceptable in Sweden, Hungary, Italy, and Spain. More then half (53%) of the doctors in the Netherlands, but only a quarter (24%) in France felt that the law should be changed to allow active euthanasia "more than now". For 40% of French doctors, end of life issues should not be regulated by law. Being male, regular involvement in research, less than six years professional experience, and having ever participated in a decision of active euthanasia were positively associated with an opinion favouring relaxation of legal constraints. Having had children, religiousness, and believing in the absolute value of human life showed a negative association. Nurses were slightly more likely to consider active euthanasia acceptable in selected circumstances, and to feel that the law should be changed to allow it more than now.
Conclusions: Opinions of health professionals vary widely between countries, and, even where neonatal euthanasia is already practiced, do not uniformly support its legalisation.
doi:10.1136/fn.89.1.F19
PMCID: PMC1721640  PMID: 14711848
21.  Euthanasia in family practice in The Netherlands. Toward a better understanding. 
Canadian Family Physician  1997;43:231-237.
OBJECTIVE: To describe the incidence of euthanasia and assisted suicide in family practice in the Netherlands, the reasons for its practice, and the characteristics of patients and physicians involved. DESIGN: Cross-sectional survey of a random sample of Dutch family physicians. SETTING: General practices in The Netherlands. PARTICIPANTS: An anonymous questionnaire was mailed to 1042 general practitioners. Of the 996 eligible physicians, 667 (67%) completed the questionnaire. MAIN OUTCOME MEASURES: Reported practices and beliefs concerning euthanasia and assisted suicide. RESULTS: In the course of an average year, 24% of Dutch family physicians had practised euthanasia or assisted suicide. Most deaths took place at home in the presence of others. According to the physicians, the most important reasons for the request were futile suffering, fear or avoidance of loss of dignity, and unbearable suffering. Euthanasia or assisted suicide was mostly (85%) administered to patients with malignant neoplasms. Physicians were more opposed to euthanasia and assisted suicide if they had never practised it, if they had a religious affiliation, and if they were older. CONCLUSIONS: This study presents empiric data about euthanasia and assisted suicide in the context of a permissive euthanasia policy. Understanding Dutch practices could be helpful for Canadians. However, each country needs to resolve these issues in its own way.
PMCID: PMC2255221  PMID: 9040910
22.  Legal physician‐assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups 
Journal of Medical Ethics  2007;33(10):591-597.
Background
Debates over legalisation of physician‐assisted suicide (PAS) or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician‐assisted dying is legal and data have been collected over a substantial period.
Methods
The data from Oregon (where PAS, now called death under the Oregon Death with Dignity Act, is legal) comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands (where both PAS and euthanasia are now legal) comprised all four government‐commissioned nationwide studies of end‐of‐life decision making (1990, 1995, 2001 and 2005) and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought.
Results
Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups.
Conclusions
Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician‐assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges.
doi:10.1136/jme.2007.022335
PMCID: PMC2652799  PMID: 17906058
physician‐assisted dying; physician‐assisted suicide; vulnerable patients; Oregon Death with Dignity Act; Netherlands
23.  Facing requests for euthanasia: a clinical practice guideline 
Journal of Medical Ethics  2004;30(2):212-217.
On 23 September 2002, the Belgian law on euthanasia came into force. This makes Belgium the second country in the world (after the Netherlands) to have an Act on euthanasia. Even though there is currently legal regulation of euthanasia in Belgium, very little is known about how this legal regulation could be translated into care for patients who request euthanasia.
doi:10.1136/jme.2003.005082
PMCID: PMC1733828  PMID: 15082821
24.  Two Decades of Research on Euthanasia from the Netherlands. What Have We Learnt and What Questions Remain? 
Journal of Bioethical Inquiry  2009;6(3):271-283.
Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.
doi:10.1007/s11673-009-9172-3
PMCID: PMC2733179  PMID: 19718271
Euthanasia; The Netherlands
25.  Requests for euthanasia in general practice before and after implementation of the Dutch Euthanasia Act 
Background
The Netherlands was the first country in the world to implement a Euthanasia Act in 2002. It is unknown whether legalising euthanasia under strict conditions influences the number and nature of euthanasia requests.
Aim
To investigate changes in the number of, and reasons for, requests for euthanasia in Dutch general practice after implementation of the Euthanasia Act.
Design of study
Retrospective dynamic cohort study comparing 5 years before (1998–2002) and 5 years after (2003–2007) implementation of the Act.
Method
Standardised registration forms were used to collect data on requests for euthanasia via the Dutch Sentinel Practice Network. This network of 45 general practices is nationally representative by age, sex, geographic distribution, and population density.
Results
The mean annual incidence of requests before implementation amounted to 3.1/10 000 and thereafter to 2.8/10 000 patients. However, trends differed by sex. The number of requests by males decreased significantly from 3.7/10 000 to 2.6/10 000 (P = 0.008); the requests by females increased non-significantly from 2.6/10 000 to 3.1/10 000. Before and after implementation, cancer remained the major underlying disease for requesting euthanasia: 82% versus 77% for men; 73% versus 75% for females. Pain was a major reason for a request, increasing in the period before implementation (mean 27%), but declining in the period thereafter (mean 22%). Loss of dignity became a less important reason after implementation (from 18% to 10%, P = 0.04), predominantly due to a marked decrease in the number of females citing it as a reason (from 17% to 6%, P = 0.02).
Conclusion
There was no increase in demand for euthanasia after implementation of the Euthanasia Act. Pain as a reason for requesting euthanasia showed an increasing trend before implementation, but declined thereafter. Loss of dignity as a reason declined, especially in females.
doi:10.3399/bjgp10X483931
PMCID: PMC2845488  PMID: 20353671
death; epidemiology; euthanasia; euthanasia Act; family practice; legislation; palliative care

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