http://repub.eur.nl/res/aut/15850/ List of Publications en http://repub.eur.nl/static-eur/img/logo.png http://repub.eur.nl http://repub.eur.nl/res/pub/23727/ 2011-01-01T00:00:00Z Zoals ook elders in dit themanummer aan de orde komt, wordt informatie over de kwaliteit van zorginstellingen en zorgverleners in toenemende mate openbaar gemaakt. Onder andere maakt de Inspectie voor de Gezondheidszorg (IGZ) sinds enkele jaren de namen openbaar van instellingen die onder verscherpt toezicht zijn geplaatst. Komt dat de kwaliteit van de zorg ten goede? In deze opinierubriek legt prof. dr. Gerrit van der Wal, Inspecteur-generaal voor de Gezondheidszorg, uit waarom de IGZ de namen van instellingen met verscherpt toezicht publiceert en welke effecten de IGZ hiermee beoogt te realiseren. Dr. Judith van Erp, criminoloog bij de Erasmus School of Law en auteur van diverse publicaties over openbaarmaking in het toezicht, waaronder het boek Naming en shaming in het markttoezicht (Boom Juridische uitgevers 2009), waarschuwt voor onbedoelde neveneffecten. http://repub.eur.nl/res/pub/28008/ 2010-07-01T00:00:00Z Objective: To describe awareness, use and supportiveness for physicians of three practice guidelines on medical end-of-life decisions, and to identify factors associated with increased awareness of these guidelines. Methods: Questionnaires were sent to 793 physicians from 12 hospitals in 2005 (response 52%). Results: Most physicians were aware of the existence of the practice guidelines for euthanasia (75%) and do-not-resuscitate decisions (63%), and 35% were aware of the existence of the guidelines for palliative sedation. Physicians who had read the guidelines and had been in a situation in which they had to consider a euthanasia request, 88% had used the guidelines for euthanasia; corresponding figures are 92% for do-not-resuscitate and 100% for palliative sedation. When used, almost all physicians felt the guideline had been supportive. More positive attitudes towards guidelines and involvement in guideline development were associated with increased awareness of the presence of guidelines. Conclusion: It appears that practice guidelines on medical end-of-life decisions are useful for physicians: when they are aware of the presence of such guidelines in their institution, they gain support when using them. Practice implications: Health care institutions should be encouraged to disseminate guidelines among caregivers, and also involve them in the development of the guidelines. http://repub.eur.nl/res/pub/19887/ 2010-03-01T00:00:00Z Objectives: To describe how Dutch healthcare institutions develop and disseminate institutional practice guidelines on medical end-of-life decisions and policy statements on euthanasia and physician-assisted suicide (EAS) to relevant parties, and to describe supportiveness of EAS guidelines experienced by Dutch physicians. Methods: Questionnaires to all Dutch health care institutions in 2005. Questionnaire to sample of Dutch clinical specialists and nursing home physicians. Results: In most health care institutions, physicians (79%), ethics committees (79%), board of directors (64%) and nurses (61%) were involved in the development of guidelines. The Euthanasia Act and national guidelines were the most frequently reported sources for the development (73% and 71%, respectively). Not all institutions disseminated their written EAS policy statements and practice guidelines on medical end-of-life decisions to all relevant parties. Dutch physicians who reported the presence of a written guideline for EAS in their institution, felt supported by it in their decision-making after a patient's request for EAS. Conclusions: It is recommended that more health care institutions pay attention to the dissemination of their policy statements and practice guidelines to relevant parties. This will only lead to improvement in medical practice if this is accompanied by efforts to also stimulate the use of guidelines in practice. http://repub.eur.nl/res/pub/24376/ 2009-09-01T00:00:00Z Objectives: To describe the existence of policy statements on euthanasia and physician-assisted suicide (EAS) and practice guidelines for all medical end-of-life decisions in Dutch health care institutions in 2005, whether the existence of practice guidelines is related to characteristics of institutions, and to compare the existence of policies in 2005 and 1994. Methods: Questionnaires were sent to 566 institutions (all Dutch hospitals, nursing homes, general psychiatric hospitals, institutions for the mentally disabled, hospices) from October 2005 through March 2006. Results: Most institutions (70%) had a written policy statement concerning EAS. EAS was usually allowed under specific conditions (75%). Institutions mainly had practice guidelines for EAS and do-not-resuscitate decisions (62% and 63%). A minority had guidelines on palliative sedation (27%), alleviation of symptoms (27%) and withdrawing or withholding treatment (33%). In general, there were more practice guidelines in 2005 than in 1994. Larger institutions and institutions with an ethics committee more often had practice guidelines. Religious affiliation of an institution did not seem to be related to the existence of guidelines. Conclusions: Since many institutions still do not have practice guidelines for medical end-of-life decisions, they should be stimulated to introduce practice guidelines, being a first step in improving the quality of the care on institutional level. http://repub.eur.nl/res/pub/18325/ 2009-03-01T00:00:00Z This study investigated the impact of a visit from a consulting physician on the patient and the relatives during the euthanasia procedure in The Netherlands. Data on experiences with the consultant's visit were collected from 86 relatives and 3,614 general practitioners, who described their most recent request for euthanasia or physician-assisted suicide. More than three-quarters of the patients experienced the visit as they had expected, or became more positive. Although about 1 out of 5 patients had negative experiences, this study indicates that, in general, a visit from a consulting physician is not perceived to be burdensome for patients. http://repub.eur.nl/res/pub/33120/ 2008-02-12T00:00:00Z 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. http://repub.eur.nl/res/pub/36024/ 2007-10-01T00:00:00Z 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. http://repub.eur.nl/res/pub/36275/ 2007-06-01T00:00:00Z Aim: We compared the results of two recent studies on end-of-life decisions (ELDs) for neonates and infants in Belgium (Flanders) and the Netherlands. Methods: Questionnaires were sent to physicians who reported the death of a child under the age of 1 (Belgium: n = 292, response 87%; Netherlands: n = 249, response 84%). The questionnaires included structured questions about whether death had been preceded by ELDs, and about the decision-making process. Results: In both countries, in about 25% of all deaths a life-sustaining treatment was withheld, and in about 40% pain or other symptoms were alleviated taking into account that death might be hastened. In Belgium, a life-sustaining treatment was less often withdrawn than in the Netherlands (32% vs. 50%, respectively). Drugs were administered with the explicit intention of hastening death in similar percentages of all deaths (Belgium: 7%; Netherlands: 9%). Dutch physicians more often than Belgian physicians discussed ELDs with parents (96% vs. 81%, respectively), and with colleague physicians (94% vs. 80%, respectively). Conclusions: End-of-life decision making in severely ill neonates seems to be rather similar in Belgium and the Netherlands. Differences are that Dutch physicians more often withdraw life-sustaining treatment. Furthermore, parents and colleague physicians are more often involved in the decision making in the Netherlands. http://repub.eur.nl/res/pub/35419/ 2007-05-10T00:00:00Z BACKGROUND: In 2002, an act regulating the ending of life by a physician at the request of a patient with unbearable suffering came into effect in the Netherlands. In 2005, we performed a follow-up study of euthanasia, physician-assisted suicide, and other end-of-life practices. METHODS: We mailed questionnaires to physicians attending 6860 deaths that were identified from death certificates. The response rate was 77.8%. RESULTS: In 2005, of all deaths in the Netherlands, 1.7% were the result of euthanasia and 0.1% were the result of physician-assisted suicide. These percentages were significantly lower than those in 2001, when 2.6% of all deaths resulted from euthanasia and 0.2% from assisted suicide. Of all deaths, 0.4% were the result of the ending of life without an explicit request by the patient. Continuous deep sedation was used in conjunction with possible hastening of death in 7.1% of all deaths in 2005, significantly increased from 5.6% in 2001. In 73.9% of all cases of euthanasia or assisted suicide in 2005, life was ended with the use of neuromuscular relaxants or barbiturates; opioids were used in 16.2% of cases. In 2005, 80.2% of all cases of euthanasia or assisted suicide were reported. Physicians were most likely to report their end-of-life practices if they considered them to be an act of euthanasia or assisted suicide, which was rarely true when opioids were used. CONCLUSIONS: The Dutch Euthanasia Act was followed by a modest decrease in the rates of euthanasia and physician-assisted suicide. The decrease may have resulted from the increased application of other end-of-life care interventions, such as palliative sedation. Copyright http://repub.eur.nl/res/pub/36219/ 2007-03-01T00:00:00Z A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001, questionnaires were mailed to physicians that addressed the decision making that preceded their patient's death. Cases of ending life without an explicit request of the patient were compared with similar cases from 1995 and with cases from Belgium, Denmark, and Switzerland. In the Netherlands in 2001, patients receiving life-ending drugs without their explicit request were most often 80+ years old and had cancer. Most of them were incompetent patients nearing death. Characteristics of this practice in 1995 were quite comparable, as were characteristics of this practice in Belgium, Denmark, and Switzerland. The use of drugs with the intention to hasten death without an explicit request of the patient is part of medical end-of-life practice in the studied countries, regardless of their legal framework, and it occurs in similar fashion. Copyright http://repub.eur.nl/res/pub/36227/ 2007-01-01T00:00:00Z This study used retrospective interviews with 87 relatives to describe the experiences of patients who died by euthanasia or physician-assisted suicide (EAS) in the Netherlands. Most of the patients suffered from cancer (85%). The relatives were most often a partner (63%) or a child (28%) of the patient. Before explicitly requesting EAS most patients (79%) had spoken about their wishes concerning medical end-of-life decisions to be made at a later date. Hopeless suffering, loss of dignity, and no prospect of recovery were the most prevalent reasons for explicitly requesting EAS. According to the relative, in 92% of patients EAS had contributed favourably to the quality of the end of life, mainly by preventing or ending suffering. Copyright http://repub.eur.nl/res/pub/36340/ 2007-01-01T00:00:00Z Aim: In 2002, the Dutch Euthanasia Act came into effect, which made euthanasia available to individuals from the age of 12 and above. The objective of our study was to gain insight into how Dutch paediatricians and other physicians treating children feel about the regulation of physician-assisted dying. Methods: We interviewed 63 paediatricians, 125 general practitioners and 208 clinical specialists about their views on physician-assisted dying and the Euthanasia Act. Results: Of the paediatricians, 44% agreed with the age limit of 12 years, and 52% agreed with the requirement that parents be involved. Somewhat more than half thought the Act could contribute to the disclosure of end-of-life practices (52%), the quality of the review procedure (61%), careful decision making (54%) and the reporting rate (65%). These percentages were comparable for other physicians. A minority of the physicians in all groups indicated that, with this Act in place, they would be more willing to report such practices. The most optimistic in this respect were the paediatricians, of whom 39% expected such an effect. Conclusions: About half of Dutch paediatricians support the Euthanasia Act and expect it to achieve its aims, which is the same percentage as was found for other clinical specialists and general practitioners. However, most physicians do not foresee an increase in willingness to report cases of physician-assisted dying. http://repub.eur.nl/res/pub/14462/ 2006-01-01T00:00:00Z Objectives - To evaluate the possible determinants of euthanasia and assisted suicide, presenting data on symptoms and their treatment, and end-of-life care in two groups of patients, i.e those who request euthanasia and those who did not request euthanasia. Design - Qualitative methods with interviews. Setting - Department of Public and Occupational Health. VU Medical Centre, Amsterdam and University of Medical Centre, Rotterdam, The Netherlands. Method - Data on terminally ill cancer patients who died after their request was granted and euthanasia had been performed were compared with those of terminally ill cancer patients who did not request euthanasia. Results - The results show that the prevalence and severity of symptoms e.g., pain, feeling unwell, nausea, was higher in patients who died after their request was granted and euthanasia had been performed. No differences concerning the treatment of symptoms or the care provided were found between the two groups. Conclusion - The results suggest that the practice of euthanasia is mainly related to the patient's suffering. http://repub.eur.nl/res/pub/13906/ 2005-09-01T00:00:00Z BACKGROUND: Most end-of-life decision-making studies have, until now, involved either the general population or newborn infants. OBJECTIVE: To assess the frequency of end-of-life decisions preceding child death and the characteristics of the decision-making process in the Netherlands. METHODS: Two studies were performed. The first was a death certificate study in which all 129 physicians reporting the death of a child aged between 1 and 17 years in the period August to December 2001 received a written questionnaire; the second was an interview study in which face-to-face interviews were held with 63 physicians working in pediatric hospital departments. RESULTS: Some 36% of all deaths of children between the ages of 1 and 17 years during the relevant period were preceded by an end-of-life decision: 12% by a decision to refrain from potentially life-prolonging treatment; 21% by the alleviation of pain or symptoms with a possible life-shortening effect; and 2.7% by the use of drugs with the explicit intention of hastening death. The latter decision was made at the child's request in 0.7% and at the request of the family in 2% of cases. The interview study examined 76 cases of end-of-life decision making. End-of-life decisions were discussed with all 9 competent and 3 partly competent children, with the parents in all cases, with other physicians in 75 cases, and with nurses in 66 cases. CONCLUSIONS: While not inconsiderable, the percentage of end-of-life decisions was lower for children than for adults and newborn infants. Most children are not considered to be able to participate in the decision-making process. Decisions are generally discussed with parents and other caregivers and, if possible, with the child. http://repub.eur.nl/res/pub/10355/ 2004-01-01T00:00:00Z BACKGROUND: Terminal sedation in patients nearing death is an important issue related to end-of-life care. OBJECTIVE: To describe the practice of terminal sedation in the Netherlands. DESIGN: Face-to-face interviews. SETTING: The Netherlands. PARTICIPANTS: Nationwide stratified sample of 482 physicians; 410 responded and 211 of these reported characteristics of their most recent terminal sedation case. MEASUREMENTS: Physician reports of frequency of terminal sedation (defined as the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration), characteristics of the decision-making process, drugs used, the estimated life-shortening effect, and frequency of euthanasia discussions. RESULTS: Of respondents, 52% (95% CI, 48% to 57%) had ever used terminal sedation. Of the 211 most recent cases, physicians used terminal sedation to alleviate severe pain in 51% of patients (CI, 44% to 58%), agitation in 38% (CI, 32% to 45%), and dyspnea in 38% (CI, 32% to 45%). Physicians reported discussing with patients the decision to use deep sedation in 59% of the 211 most recent cases (CI, 52% to 66%) and the decision to forgo artificial nutrition or hydration in 34% (CI, 28% to 41%). Hastening death was partly the intention of the physician in 47% (CI, 41% to 54%) of cases and the explicit intention in 17% (CI, 13% to 22%) of cases. LIMITATIONS: The generalizability of physician reports about their most recent cases to all terminal sedation cases is uncertain. In addition, the findings are subject to recall bias and may not apply to other geographic settings. CONCLUSIONS: Terminal sedation precedes a substantial number of deaths in the Netherlands. In about two thirds of most recently reported cases, physicians indicated that in addition to alleviating symptoms, they intended to hasten death. http://repub.eur.nl/res/pub/9262/ 2000-01-01T00:00:00Z BACKGROUND AND METHODS: The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The Netherlands (one conducted in 1990 and 1991 and the other in 1995 and 1996), with a total of 649 cases. We categorized clinical problems as technical problems, such as difficulty inserting an intravenous line; complications, such as myoclonus or vomiting; or problems with completion, such as a longer-than-expected interval between the administration of medications and death. RESULTS: In 114 cases, the physician's intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5). CONCLUSIONS: There may be clinical problems with the performance of euthanasia and physician-assisted suicide. In The Netherlands, physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves because of the patient's inability to take the medication or because of problems with the completion of physician-assisted suicide. http://repub.eur.nl/res/pub/8779/ 1998-01-01T00:00:00Z OBJECTIVE: End-of-life decisions for newborn infants are usually made with the consent of parents as well as physicians, but may occasionally involve disagreement about which decision is in the best interest of the child. Our study was aimed at providing an empirical background for the ethical discussion on the parent's versus the physician's role in decision-making. METHODS: We conducted face-to-face interviews with a stratified sample of pediatricians. The response rate was 99%. The most recent decisions in newborn infants to hasten death or not prolong life and the most recent cases in which such decisions were not made because either the parents or the physician objected were comprehensively discussed. RESULTS: Decisions to hasten death or not prolong life were usually made after discussing it with parents and did not occur while parents were known to disagree. Situations in which an end-of-life decision was not made because parents did not consent predominantly involved infants with complications of prematurity (24%) or perinatal asphyxia (40%), whereas situations in which parents requested an end-of-life decision that was not acceded to by the pediatrician involved Down syndrome as the main diagnosis in 43% and as a concurrent diagnosis in 21%. Pediatricians afterwards often expressed feelings of discontent about situations in which there had been disagreement with parents. CONCLUSIONS: The opinion of parents about which medical decision is in the best interest of their child is for pediatricians only decisive in case it invokes the continuation of treatment. The principle of preserving life is abandoned only when the physician feels sufficiently sure that the parents agree that such a course of action is in the best interest of the child. http://repub.eur.nl/res/pub/8699/ 1997-01-01T00:00:00Z BACKGROUND: In 1994 the Dutch Supreme Court ruled that in exceptional instances, physician-assisted suicide might be justifiable for patients with unbearable mental suffering but no physical illness. We studied physician-assisted suicide and euthanasia in psychiatric practice in the Netherlands. METHODS: In 1996, we sent questionnaires to 673 Dutch psychiatrists - about half of all such specialists in the country - and received 552 responses from the 667 who met the study criteria (response rate, 83 percent). We estimated the annual frequencies of requests for physician-assisted suicide by psychiatrists and actual instances of assistance. RESULTS: Of the respondents, 205 (37 percent) had at least once received an explicit, persistent request for physician-assisted suicide and 12 had complied. We estimate there are 320 requests a year in psychiatric practice and 2 to 5 assisted suicides. Excluding those who had ever assisted, 345 of the respondents (64 percent) thought physician-assisted suicide because of a mental disorder could be acceptable, including 241 who said they could conceive of instances in which they themselves would be willing to assist. The most frequent reasons for refusing were the belief that the patient had a treatable mental disorder, opposition to assisted suicide in principle, and doubt that the suffering was unbearable or hopeless. Most, but not all, patients who had been assisted by their psychiatrists in suicide had both a mental disorder and a serious physical illness, often in a terminal phase. Thirty percent of the respondents had been consulted at least once by a physician in another specialty about a patient's request for assisted death. The annual number of such consultations was estimated at 310, about 3 percent of the estimated 9700 requests for euthanasia or physician-assisted suicide in medical practice. CONCLUSIONS: Explicit requests for physician-assisted suicide are not uncommon in psychiatric practice in the Netherlands, but these requests are rarely granted. Psychiatric consultation for medical patients who request physician-assisted death is relatively rare.