Rietjens, J.A.C.

Do guidelines on euthanasia and physician-assisted suicide in Dutch hospitals and nursing homes reflect the law? A content analysis (Article)

2012-01-01T00:00:00Z

To describe the content of practice guidelines on euthanasia and assisted suicide (EAS) and to compare differences between settings and guidelines developed before or after enactment of the euthanasia law in 2002 by means of a content analysis. Most guidelines stated that the attending physician is responsible for the decision to grant or refuse an EAS request. Due care criteria were described in the majority of guidelines, but aspects relevant for assessing these criteria were not always described. Half of the guidelines described the role of the nurse in the performance of euthanasia. Compared with hospital guidelines, nursing home guidelines were more often stricter than the law in excluding patients with dementia (30% vs 4%) and incompetent patients (25% vs 4%). As from 2002, the guidelines were less strict in categorically excluding patients groups (32% vs 64%) and in particular incompetent patients (10% vs 29%). Healthcare institutions should accurately state the boundaries of the law, also when they prefer to set stricter boundaries for their own institution. Only then can guidelines provide adequate support for physicians and nurses in the difficult EAS decision-making process.

Palliative sedation at home in the Netherlands: A nationwide survey among nurses (Article)

2011-08-01T00:00:00Z

Aim. This paper is a report of a nationwide study conducted to assess experiences of nurses involved in palliative sedation at home after introduction of a physicians' guideline for palliative sedation. Background. Most studies investigating the practice of palliative sedation focus on physicians' practices and attitudes. However, little is known about experiences and attitudes of nurses. Methods. A web-based structured questionnaire was offered to 387 nurses providing medical technical care in 2007, assessing their experiences concerning decision-making, treatment policy and communication, focussing on the last patient receiving palliative sedation. Results. The questionnaire was filled out by 201 nurses (response rate 52%). The majority of respondents agreed with the indication for palliative sedation. However, 21% reported to have refused carrying out a palliative sedation in the preceding year. The general practitioner was not present at the start of palliative sedation in a third of the cases, but was available when needed. The sedation was considered insufficiently effective by 42% of the respondents. According to a third of the respondents, the level of sedation was not related to the required level of symptom relief nor were changes in dosage based on the severity of symptoms. Conclusion. Although the guideline for palliative sedation appears to be followed adequately in the majority of cases with respect to indication for palliative sedation and reportage. The survey findings revealed shortcomings in medication policy, communication, medical control over the start and continued monitoring of palliative sedation. © 2011 The Authors. Journal of Advanced Nursing

Palliative sedation in flemish palliative care units (Article)

2011-06-01T00:00:00Z

The perspectives of clinical staff and bereaved informal care-givers on the use of continuous sedation until death for cancer patients: The study protocol of the UNBIASED study (Article)

2011-03-08T00:00:00Z

Background: A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: 'palliative sedation', 'terminal sedation', 'continuous deep sedation until death', 'proportionate sedation' or 'palliative sedation to unconsciousness'. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice. This protocol relates to the UNBIASED study (UK Netherlands Belgium International Sedation Study), which comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents' informal care-givers of the use of continuous sedation until death and their perceptions of its contribution to the dying process. The UNBIASED study is part of the European Association for Palliative Care Research Network. Methods/Design. To realize the study aims, a two-phase study has been designed. The study settings include: the domestic home, hospital and expert palliative care sites. Phase 1 consists of: a) focus groups with health care staff and bereaved informal care-givers; and b) a preliminary case notes review to study the range of sedation therapy provided at the end of life to cancer patients who died within a 12 week period. Phase 2 employs qualitative methods to develop 30 patient-centred case studies in each country. These involve interviews with staff and informal care-givers closely involved in the care of cancer patients who received continuous sedation until death. Discussion. To our knowledge, this is one of the few studies which seek to take a qualitative perspective on clinical decision making surrounding the use of continuous sedation until death and the only one which includes the perspectives of nurses, physicians, as well as bereaved informal care-givers. It has several potential strengths, weaknesses, opportunities and threats associated with the specific design of the study, as well as with the sensitive nature of the topic and the different frameworks for ethical review in the participating countries.

Judgment of unbearable suffering and willingness to grant a euthanasia request by Dutch general practitioners (Article)

2010-10-01T00:00:00Z

'Unbearable suffering' is a pivotal criterion for lawful euthanasia in the Netherlands. The due-care criterion is not defined in the law and could refer to conditions varying from physical pain to psychological forms of suffering. It is unknown, however, what doctors consider 'unbearable suffering' and for what kind of suffering they are willing to grant a euthanasia request. We conducted a vignette-study among Dutch general practitioners (n = 115, response 38%). We found high concordance between the classification of a patient's suffering as 'unbearable' and the willingness to grant a euthanasia request. Most doctors are only inclined to classify a patient's suffering as 'unbearable' when suffering is directly related to untreatable and actual pain or physical symptoms. Doctors' judgment of suffering varied strongly in cases in which physical symptoms are absent and a patient suffers from a combination of irreversible functional loss and 'existential' kinds of suffering. Although some doctors (17%) stick to the idea that physical symptoms are a necessary condition for 'unbearable suffering', a majority is willing to occasionally make an exception. When and for which case an individual doctor will make such an exception, is highly unpredictable. Various explanations for the findings are discussed.

Physicians' and nurses' experiences with continuous palliative sedation in the Netherlands (Article)

2010-07-26T00:00:00Z

Physicians' labelling of end-of-life practices: A hypothetical case study (Article)

2010-01-01T00:00:00Z

Objectives: To investigate why physicians label end-oflife acts as either 'euthanasia/ending of life' or 'alleviation of symptoms/palliative or terminal sedation', and to study the association of such labelling with intended reporting of these acts. Methods: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three 'standard' cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician's intention, (3) type of patient request, (4) patient's life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician's labelling, with multilevel multivariable logistic regression. Results: The characteristics that contributed most to labelling cases as 'euthanasia/ending of life' were the administration of muscle relaxants (99% of these cases were labelled as 'euthanasia/ending of life') or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as 'euthanasia' (87%) or 'ending of life' (56%) than other cases. Conclusions: Similar cases are not uniformly labelled. However, a physicians' label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.

Discussing prognosis with terminally ill cancer patients and relatives: A survey of physicians' intentions in seven countries (Article)

2009-12-01T00:00:00Z

Objective: To determine the extent to which physicians in different countries intend to inform terminal patients and relatives about prognosis, and to identify physician characteristics associated with an active approach to such discussions. Methods: In the context of a European research project, a study on disclosing prognosis was conducted in seven countries. A written questionnaire with questions regarding hypothetical cases and actual practices was sent to physicians from specialties involved in the care of dying patients. Results: 10,139 questionnaires were studied. The response rate was greater than 50% in all countries except Italy (39%). The percentage of physicians who indicated that they would actively inform competent patients of their prognosis varied between countries from 52% in Italy to 99% in Sweden. For informing relatives of incompetent patients, rates were higher, ranging from 86% in Denmark to 98% in Australia. Younger physician age and training in palliative care were associated with an active intention to discuss prognosis. Conclusion: Physicians' intentions to discuss prognosis with patients and families vary largely across countries. Physician age and training in palliative care may also affect intentions. Practice implications: Continuing training should focus on improving physicians' ability to communicate responsibly about prognosis with patients and families.

Reporting of euthanasia and physician-assisted suicide in the Netherlands: Descriptive study (Article)

2009-12-01T00:00:00Z

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.

End of life decisions. Doctors can be trusted. (Article)

2009-09-28T00:00:00Z

Exploration of Concerns of Relatives During Continuous Palliative Sedation of Their Family Members with Cancer (Article)

2009-09-01T00:00:00Z

Data on the experiences of relatives during continuous palliative sedation are scarce. Because these relatives may be the ones most closely involved with the patient, it is important to evaluate the possible burdens that they experience. We aimed to explore and evaluate concerns of relatives during continuous palliative sedation of their family members admitted to an acute palliative care unit. Through retrospective multidisciplinary record research, we obtained data on concerns of the relatives during the period that continuous palliative sedation took place. From October 2001 to October 2004, 45 patients died after starting continuous palliative sedation. In 51% of the cases, the relatives expressed concerns after starting the therapy. Concerns could be distinguished into three main themes: concerns about the aim of continuous palliative sedation (27%), concerns related to the well-being of the patient (29%), and concerns related to the well-being of relatives themselves (18%). Patient and sedation characteristics did not differ significantly between sedations in which relatives did and did not express concerns, except for the duration of the sedation. The median duration of the continuous palliative sedation when concerns were expressed was 46 hours, compared with 19.5 hours when this was not the case (P < 0.05). Both the nature and extent of the concerns suggest that relatives are in need of continuous information and professional guidance during continuous palliative sedation of their family members. Availability of caregiver guidance and clear process documentation are crucial and indispensable in providing this.

Two decades of research on euthanasia from the Netherlands. What have we learnt and what questions remain? (Article)

2009-08-01T00:00:00Z

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.

Judgement of suffering in the case of a euthanasia request in the Netherlands (Article)

2009-08-01T00:00:00Z

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a "standard case" of a patient with physical suffering and limited life expectancy, the descriptions included cases in which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. Results: The cases were recognisable for almost all respondents. For the "standard case" nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2-49%) than consultants (25-79%) and members of the euthanasia review committees (24-88%). In each group, the suffering of patients with early dementia and patients who were "tired of living" was least often considered to be unbearable. Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient's suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia. Copyright

Re: Palliative sedation: the need for a descriptive definition (Article)

2009-07-31T00:00:00Z

A comparison of physicians' end-of-life decision making for non-western migrants and Dutch natives in the Netherlands (Article)

2008-12-01T00:00:00Z

Background: Non-western migrants have a different cultural background that influences their attitudes towards healthcare. As the first wave of this relatively young group is growing older, we investigated, for the first time, whether end-of-life decision-making practices for non-western migrants differ from Dutch natives. Methods: In 2005, we sent questionnaires to physicians who attended deaths identified from the central death registry of Statistics Netherlands (n = 9651; non-western migrants: n = 627, total response: 78%). We performed multivariate logistic regression analyses adjusted for age, sex and cause of death. Results: Of all deaths of non-western origin, 54% were non-sudden, whereas 67% of all deaths with a Dutch origin were non-sudden (P = 0.00). A relatively large number of non-suddenly deceased persons of non-western origin had died under the age of 65 (53%) as compared to Dutch natives (15%). Euthanasia was performed in 2.4% of all non-suddenly deceased persons in the non-western migrant group as compared to 2.7% in the native Dutch group (adjusted odds ratio = 0.82, P = 0.63). Alleviation of symptoms with a potential life-shortening effect was somewhat lower for non-western migrants (30% vs. 38%; adjusted odds ratio = 0.78, P = 0.07). Physicians decided to forgo potentially life-prolonging treatment in comparable rates (26% vs. 23%; adjusted odds ratio = 1.1, P = 0.73). Yet, the type of treatments forgone and underlying reasons differed. Conclusion: Euthanasia was not less common among non-suddenly deceased non-western migrants as compared to Dutch natives. However, intensive symptom alleviation was used less frequently and forgoing potentially life-prolonging treatment involved different characteristics. These findings suggest that cultural factors may affect end-of-life decision making.

Continuous deep sedation for patients nearing death in the Netherlands: descriptive study (Article)

2008-10-31T00:00:00Z

Objectives To study the practice of continuous deep sedation in 2005 in the Netherlands and compare it with findings from 2001. Design Questionnaire study about random samples of deaths reported to a central death registry in 2005 and 2001. Setting Nationwide physician study in the Netherlands. Participants Reporting physicians received a questionnaire about the medical decisions that preceded the patient’s death; 78% (n=6860) responded in 2005 and 74% (n=5617) in 2001. Main outcome measures Characteristics of continuous deep sedation (attending physician, types of patients, drugs used, duration, estimated effect on shortening life, palliative consultation). Requests for euthanasia. Results The use of continuous deep sedation increased from 5.6% (95% confidence interval 5.0% to 6.2%) of deaths in 2001 to 7.1% (6.5% to 7.6%) in 2005, mostly in patients treated by general practitioners and in those with cancer (in 2005, 47% of sedated patients had cancer v 33% in 2001). In 83% of cases sedation was induced by benzodiazepines, and in 94% patients were sedated for periods of less than one week until death. Nine per cent of those who received continuous deep sedation had previously requested euthanasia but their requests were not granted. Nine per cent of the physicians had consulted a palliative expert. Conclusions The increased use of continuous deep sedation for patients nearing death in the Netherlands and the limited use of palliative consultation suggests that this practice is increasingly considered as part of regular medical practice.

Dutch criteria of due care for physician-assisted dying in medical practice: A physician perspective (Article)

2008-09-01T00:00:00Z

Introduction: The Dutch Euthanasia Act (2002) states that euthanasia is not punishable if the attending physician acts in accordance with the statutory due care criteria. These criteria hold that: there should be a voluntary and well-considered request, the patient's suffering should be unbearable and hopeless, the patient should be informed about their situation, there are no reasonable alternatives, an independent physician should be consulted, and the method should be medically and technically appropriate. This study investigates whether physicians experience problems with these criteria in medical practice. Methods: In 2006, questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response rate: 56%). Physicians were asked about problems in their decision-making related to requests for euthanasia or assisted suicide after enforcement of the 2002 Euthanasia Act. Results: Of all physicians who had received a request for euthanasia or assisted suicide (75%), 25% had experienced problems in the decision-making with regard to at least one of the criteria of due care. Physicians who had experienced problems mostly indicated to have had problems related to evaluating whether or not the patient's suffering was unbearable and hopeless (79%) and whether or not the patient's request was voluntary or well considered (58%). Discussion: Physicians in The Netherlands most frequently reported problems related to aspects in which they have to evaluate the patient's subjective perspective(s). However, it can be questioned whether placing emphasis on these subjective aspects is an adequate fulfilment of the duties imposed on physicians, as laid down in the Dutch Euthanasia Act.

Palliative Sedation in a Specialized Unit for Acute Palliative Care in a Cancer Hospital: Comparing Patients Dying With and Without Palliative Sedation (Article)

2008-09-01T00:00:00Z

Palliative sedation is undergoing extensive debate. The aims of this study were to describe the practice of palliative sedation at a specialized acute palliative care unit and to study whether patients who received palliative sedation differed from patients who did not. We performed a systematic retrospective analysis of the medical and nursing records of all 157 cancer patients who died at the acute palliative care unit between 2001 and 2005. Palliative sedation, defined as continuous deep sedation prior to death, was used for 43% of all deceased patients. In 87% of the sedated patients, it was started in the last two days before death. Sedated and nonsedated patients did not differ in survival after admission (eight days vs. seven days, P = 0.12). Sedated patients were younger (55 years vs. 59 years, P = 0.04) and more often had malignancies of the digestive tract (P < 0.01). In both groups, common symptoms at admission were pain (79% vs. 87%, P = 0.23), constipation, (40% vs. 48%, P = 0.46), and dyspnea (32% vs. 29%, P = 0.77). On the day that palliative sedation was started, sedated patients more often suffered from dyspnea and delirium than nonsedated patients at a comparable day before death. The most important indications for palliative sedation were terminal restlessness (60%) and dyspnea (46%). We conclude that at the studied acute palliative care unit, patients who ultimately received palliative sedation did not have symptoms different than nonsedated patients at admission, but on the day at which the sedation was started, they suffered more often from delirium and dyspnea.

Having a difficult time leaving: Experiences and attitudes of nurses with palliative sedation (Article)

2007-11-26T00:00:00Z

Background: Palliative sedation is an important topic of medical and ethical debates. Although nurses often participate in its use, little is known about their attitudes and experiences. Methods: In a qualitative study, we explored nurses' attitudes and experiences with palliative sedation. In semi-structured interviews with 16 nurses, we collected data about their most memorable cases of palliative sedation. Interviews were transcribed, coded and analysed using constant comparative analysis. Results: In all of the described cases, palliative sedation was used primarily to address physical suffering in severely ill patients. Concomitant reasons for the use of palliative sedation were nonphysical suffering, the patient's wish and the family's distress about the patient's suffering. The use of palliative sedation for the patient's nonphysical suffering was often difficult for many of the nurses. Nurses had different perspectives on whether palliative sedation may have had a life-shortening effect on the patient. Some thought that it had not accelerated death; others thought that it may have accelerated death but that this was justified when there was no other way of relieving discomfort. A third group thought that palliative sedation was close to the practice of euthanasia and they often found it difficult to be involved in its use. Nevertheless, palliative sedation was considered by all the nurses to positively contribute to the patient's quality of dying in all discussed cases. Conclusions: The struggles that nurses in this study cohort experienced indicate the need for further study and may suggest the need for more nursing education and discussion about ethical aspects of palliative sedation.

Forgoing Artificial Nutrition or Hydration in Patients Nearing Death in Six European Countries (Article)

2007-09-01T00:00:00Z

Whether or not artificial nutrition or hydration (ANH) may be forgone in terminally ill patients has been the subject of medical and ethical discussions. Information about the frequency and background characteristics of making decisions to forgo ANH is generally limited to specific clinical settings. The aim of this study was to compare the practice of forgoing ANH in six European countries: Belgium, Denmark, Italy, The Netherlands, Sweden, and Switzerland. In each country, random samples were drawn from death registries. Subsequently, the reporting physician received a questionnaire about the medical decisions that preceded the patient's death. The total number of deaths studied was 20,480. The percentage of all deaths that were preceded by a decision to forgo ANH varied from 2.6% in Italy to 10.9% in The Netherlands. In most countries, decisions to forgo ANH were more frequently made for female patients, patients aged 80 years or older, and for patients who died of a malignancy or disease of the nervous system (including dementia). Of patients in whom ANH was forgone, 67%-93% were incompetent. Patients in whom ANH was forgone did not receive more potentially life-shortening drugs to relieve symptoms than other patients for whom other end-of-life decisions had been made. Decisions to forgo ANH are made in a substantial percentage of terminally ill patients. Providing all patients who are in the terminal stage of a lethal disease with ANH does not seem to be a widely accepted standard among physicians in Western Europe.

End-of-life practices in the Netherlands under the Euthanasia Act (Article)

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

Using drugs to end life without an explicit request of the patient (Article)

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

Medical Decision-Making at the End of Life: Experiences and attitudes of physicians and the general public (Doctoral Thesis)

2006-02-01T00:00:00Z

Medical end-of-life decisions for children in the Netherlands. (Article)

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.

Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands (Article)

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.