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OBJECTIVES: To investigate why physicians label end-of-life 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. [ABSTRACT FROM AUTHOR]

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 lifeterminating 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 modem 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. [ABSTRACT FROM AUTHOR]

Objectives: To estimate the incidence of (compliance with) advance euthanasia directives of patients suffering from dementia in the Netherlands and to gain knowledge about the experiences of physicians.Design: Retrospective interview study.Setting: Physicians in the Netherlands.Participants: Four hundred ten physicians.Measurements: Physicians were interviewed about their demented patients who had an advance euthanasia directive. Nursing home physicians were interviewed more extensively.Results: Approximately 2,200 demented patients with an advance euthanasia directive die annually after being treated by a physician who knows about this directive. In 76% of such cases, compliance with the directive was discussed, but euthanasia was seldom performed. In two-thirds of the cases of demented nursing home patients with an advance euthanasia directive, the physician was able to identify during the course of the disease a situation for which the patient had intended the directive. One-quarter of the nursing home physicians thought that their most recent patient suffered unbearably to a (very) high degree, and half of them thought that the patient suffered hopelessly to a (very) high degree. In three-quarters of the cases, the relatives did not want the nursing home physician to comply with the directive, but they did want to respect the patient's wishes by forgoing life-prolonging treatment, which occurred in approximately 90% of cases.Conclusion: Most nursing home physicians think that the suffering of patients with dementia can be unbearable and hopeless as a consequence of dementia, but most physicians do not consider dementia to be grounds for euthanasia, unless perhaps the patient has an additional illness. [ABSTRACT FROM AUTHOR]

In the Netherlands there has been ongoing debate in the past 10 years about the availability of a hypothetical 'suicide pill', with which older people could end their life in a dignified way if they so wished. Data on attitudes to the suicide pill were collected in the Netherlands from 410 physicians, 1,379 members of the general population, and 87 relatives of patients who died after euthanasia or physician-assisted suicide. The general population and relatives were more in favor than physicians. Fifteen percent of the general population and 36% of the relatives thought a suicide pill should be made available. [ABSTRACT FROM AUTHOR]

OBJECTIVE: To determine how often requests are made for euthanasia and physician-assisted suicide (EAS) in the absence of severe disease and how such requests are dealt with in medical practice in The Netherlands. METHOD: Retrospective interview study. Participants: 125 general practitioners (GPs), 77 nursing home physicians (NHPs), and 208 clinical specialists. RESULTS: In The Netherlands, each year approximately 400 people request EAS, because they are 'weary of life'. Thirty per cent of all physicians have at some time received an explicit request for EAS in the absence of severe disease; 3% of all physicians had granted a request for EAS in such a case. Most requests for EAS to GPs in the absence of severe disease (n = 29) were made by single people aged 80 years and over. While their problems were most frequently of a social nature, 79% had one or more non-severe illnesses. Most GPs refused the request; half of them proposed an alternative treatment, which the patient often refused. Nineteen people who did not receive any treatment persisted in their wish to die; the request for EAS from 5 out of 10 patients who received one or more types of treatment was withdrawn or became less explicit. CONCLUSIONS: Most physicians in The Netherlands refuse requests for EAS in the absence of severe disease. Most patients persist in their request. In an ageing population more research is needed to provide physicians with practical interventions to prevent suicide and to make life bearable and satisfactory for elderly people who wish to die. [ABSTRACT FROM AUTHOR]

STUDY OBJECTIVE: To illustrate to what extent the cost-effectiveness of an evidence-based prevention programme may depend on evidence-based performance, by the example of screening for congenital heart disease in Dutch child health care. METHODS: A patient follow-up study on 290 children with congenital heart disease, of which 83 with significant disorders, diagnosed over two years, and born in the south west of the Netherlands. RESULTS: Adequate screening for congenital heart disease at Dutch child health centres, compared to inadequate screening, proves to be effective (OR: 0.18; 95% CI: 0.04-0.87). However only 15% of all patients with significant disorders in this study was adequately screened. Total health care costs involved over two years amount to over $3 million. Of these costs, 13% are to be attributed to screening tests; 8% to referrals resulting from screening. The costs for screening and referrals, as they were actually performed, are estimated at about $72.000 per patient benefiting from it. Were all children to be screened adequately this sum would be reduced to about $15.000. CONCLUSION: Not only should prevention programmes be evidence-based, but also outcome and quality, monitored by periodically establishing whether they are optimally performed. [ABSTRACT FROM AUTHOR]

Background: The actual yield from current screening for clinically significant congenital heart malformations in Dutch child health care is far from optimal. In this study factors that determine the effectiveness of this screening are identified and recommendations for the optimization of the screening programme are formulated.Methods: Eighty-two patients with a clinically significant congenital heart malformation were consecutively included in this study. Parents and child health centre physicians were interviewed in order to establish the screening, detection and referral history. Paediatric cardiologists established whether these patients were diagnosed 'in time' or 'too late'.Results: Incomplete performance of the screening examination has more influence on the occurrence of delayed diagnoses than failure by parents to adhere to the complete visit schedule. Adequate screening advances detection of congenital heart malformations. Severity, however, is the most predominant determinant of the age at referral and diagnosis, as well as of the risk of complications. In only 7 out of 39 patients diagnosed 'too late', could no avoidable cause for an adverse outcome be found. In 10 cases (25%) there was a prolonged interval between first referral and diagnosis.Conclusion: To optimize the yield of the screening programme, improvement in the performance of the child health centre physicians and the co-operation of other physicians involved in reducing the interval between referral and diagnosis are required. Thus a considerable improvement in the prevention of complications of congenital heart malformations can be obtained. [ABSTRACT FROM AUTHOR]

Background: Variations in 'avoidable' mortality may reflect variations in the quality of care, but they may also be due to variations in incidence or severity of diseases. We studied the association between regional variations in 'avoidable' mortality and variations in disease incidence. For a selection of conditions we also analysed whether the proportion of in-hospital deaths can explain the regional variations in incidence-adjusted mortality.Methods: Relative risks for mortality, incidence, incidence-adjusted mortality and in-hospital mortality (1984-1994) were calculated by log-linear regression. Linear regression was used to examine the relationship between mortality and incidence on the one hand, and between incidence-adjusted mortality and in-hospital mortality on the other.Results: Significant regional mortality variations were found for cervical cancer, cancer of the testis, hypertensive and cerebrovascular disease, influenza/pneumonia, cholecystitis/lithiasis, perinatal causes and congenital cardiovascular anomalies. Regional mortality differences in general were only partly accounted for by incidence variations. The only exception was cervical cancer, which no longer showed significant variations after adjustment for incidence. The contribution of inhospital mortality variations to total cause-specific mortality variations varied between conditions: the highest percentage of explained variance was found for mortality from CVA (60.1%) and appendicitis (29.2%).Conclusions: Incidence data are a worthy addition to studies on 'avoidable' mortality. It is to be expected that the incidence-adjusted mortality rates are more sensitive for quality-of-care variations than the 'crude' mortality variations. Nevertheless, further research at the individual level is needed to identify possible deficiencies in health care delivery. [ABSTRACT FROM AUTHOR]

Background: Although screening for congenital heart malformations is part of the child health care programme in several countries, there are very few published evaluations of these activities. This report is concerned with the evaluation of this screening at the Dutch Child Health Centres (CHC).Methods: All consecutive patients, aged between 32 days and 4 years, presented at the Sophia Children's Hospital Rotterdam throughout a period of 2 years, with a congenital heart malformation were included in this study. Paediatric cardiologists established whether or not these patients were diagnosed after haemodynamic complications had already developed (diagnosed 'too late'). Parents and CHC-physicians were interviewed in order to establish the screening and detection history. Test properties were established for all patients with a congenital heart malformation (n = 290), intended effects of screening were established in patients with clinically significant malformations (n = 82).Results: The sensitivity of the actual screening programme was 0.57 (95% CI : 0.51-0.62), the specificity 0.985 (95% CI : 0.981-0.990) and the predictive value of a positive test result 0.13 (95% CI: 0.10-0.19). Sensitivity in a subpopulation of patients adequately screened was 0.89 (95% CI: 0.74-0.96). Adequately screened patients were less likely to be diagnosed 'too late' than inadequately screened patients (odds ratio [OR] = 0.20, 95% CI: 0.04-1.05). The actual risk of being diagnosed 'too late' in the study-population (48%) was only slightly less than the estimated risk for patients not exposed to CHC-screening (58%, 95% CI: 43%-72%). Adequately screened patients however were at considerably less risk (17%, 95% CI: 4%-48%).Conclusion: Screening for congenital heart malformations in CHC contributes to the timely detection of these disorders. The actual yield, however, is far from optimal, and the screening programme should be improved. [ABSTRACT FROM AUTHOR]

Background: Population-based screening for prostate cancer is currently being evaluated in randomized clinical trials in the United States and in Europe. Side effects arising from the process of screening and from the earlier treatment of screen-detected prostate cancer may be important factors in the evaluation. To examine health-related quality of life (or health status) among men screened for prostate cancer, we conducted a longitudinal study of 626 attenders to the Rotterdam (The Netherlands) prostate cancer screening program and of 500 nonparticipants.Methods: Attenders of the screening program and nonparticipants completed self-assessment questionnaires (SF-36 [i.e., Medical Outcomes Study 36-Item Short-Form Health Survey] and EQ-5D [i.e., EuroQol measure for health-related quality of life] health surveys) to measure generic health status, as well as an additional questionnaire for anxiety and items relating to prostate cancer screening.Results: Physical discomfort during digital rectal examination and during transrectal ultrasound was reported by 181 (37%) of 491 men and by 139 (29%) of 487 men, respectively; discomfort during prostate biopsy was reported by 64 (55%) of 116 men. Mean scores for health status and anxiety indicated that the participants did not experience relevant changes in physical, psychological, and social functioning during the screening procedure. However, high levels of anxiety were observed throughout the screening process among men with a high predisposition to anxiety. Similar scores for anxiety predisposition were observed among attenders and nonparticipants.Conclusions: At the group level, we did not find evidence that prostate cancer screening induced important short-term health-status effects, despite the short-lasting side effects related to the biopsy procedure. However, subgroups may experience high levels of anxiety. The implication is that unfavorable health-status effects of prostate cancer screening occur mainly in the treatment phase. [ABSTRACT FROM AUTHOR]

Background: Results from five Swedish randomized trials may provide the most conclusive evidence on the effect of mammographic screening and have been used to forecast the expected reduction in breast cancer mortality in other programs. However, those trials demonstrated different degrees of reduction. The interpretation of observed mortality reduction after long follow-up for women aged 40-49 years at trial entry is both important and controversial.Purpose: We estimated what percentage of the observed mortality reduction for women aged 40-49 years at entry into the five Swedish screening trials might be attributable to screening these women at 50 years of age or older. Moreover, we calculated the most likely percentage mortality reduction for specific screening programs if the Swedish results were generalized and analyzed whether characteristics of each trial might at least partly explain the observed differences in reductions among the trials.Methods: Each Swedish trial was simulated with one underlying computer simulation model (MISCAN--MIcrosimulation SCreening ANalysis) of the natural history of the disease and the performance of screening, taking into account nine important trial characteristics. Improvement in prognosis for screen-detected case patients was estimated with age-specific reduction for all trials and each trial design as a reference.Results: An expected 7% reduction in breast cancer mortality for women aged 40-49 years at trial entry (relative risk [RR] = 0.93) was determined by computer modeling, assuming no improvement in prognosis for cancers that are screen detected before 50 years of age. This result indicates that, of the overall 10% observed reduction (RR = 0.90) in the five Swedish trials analyzed, most (70%) of this reduction might be attributable to screening these women in later rounds after their 50th birthday. Using additional trial information, predictions of breast cancer mortality reduction in women 50 years or older might be 11% larger than previously expected, assuming that high-quality mammographic screening can be achieved in nationwide programs. For women aged 50-69 years at trial entry, the differences in expected versus observed mortality reduction among the trials are estimated to be relatively small. (Expected mortality reductions range from 24% to 32%).Conclusions: Results from the Swedish randomized breast cancer-screening trials should be seen as more favorable regarding the effect of mammographic screening in reducing breast cancer mortality for women aged 50-69 years than was estimated earlier. Our analyses also suggest that the improvement in prognosis due to screening for women aged 40-49 years is much smaller than that for women aged 50 years or older. Approximately, 70% of the 10% observed reduction in breast cancer mortality (i.e., 7%) for women aged 40-49 years at trial entry might be attributable to a reduction due to screening these women after they reach age 50.Implications: Detailed screening data for the 40- to 49-year age group of all Swedish trials should be analyzed to specifically estimate the natural history and performance of screening in this age group. [ABSTRACT FROM AUTHOR]

Background: Although guidelines advise titration of palliative sedation at the end of life, in practice the depth of sedation can range from mild to deep. We investigated physicians' considerations about the depth of continuous sedation.Methods: We performed a qualitative study in which 54 physicians underwent semistructured interviewing about the last patient for whom they had been responsible for providing continuous palliative sedation. We also asked about their practices and general attitudes toward sedation.Results: We found two approaches toward the depth of continuous sedation: starting with mild sedation and only increasing the depth if necessary, and deep sedation right from the start. Physicians described similar determinants for both approaches, including titration of sedatives to the relief of refractory symptoms, patient preferences, wishes of relatives, expert advice and esthetic consequences of the sedation. However, physicians who preferred starting with mild sedation emphasized being guided by the patient's condition and response, and physicians who preferred starting with deep sedation emphasized ensuring that relief of suffering would be maintained. Physicians who preferred each approach also expressed different perspectives about whether patient communication was important and whether waking up after sedation is started was problematic.Interpretation: Physicians who choose either mild or deep sedation appear to be guided by the same objective of delivering sedation in proportion to the relief of refractory symptoms, as well as other needs of patients and their families. This suggests that proportionality should be seen as a multidimensional notion that can result in different approaches toward the depth of sedation. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

CONTEXT: Palliative care is often focused on cancer patients. Palliative sedation at the end of life is an intervention to address severe suffering in the last stage of life. OBJECTIVES: To study the practice of continuous palliative sedation for both cancer and noncancer patients. METHODS: In 2008, a structured questionnaire was sent to 1580 physicians regarding their last patient receiving continuous sedation until death. RESULTS: A total of 606 physicians (38%) filled out the questionnaire, of whom 370 (61%) reported on their last case of continuous sedation (cancer patients: n=282 [76%] and noncancer patients: n=88 [24%]). More often, noncancer patients were older, female, and not fully competent. Dyspnea (odds ratio [OR]=2.13; 95% confidence interval [CI]: 1.22, 3.72) and psychological exhaustion (OR=2.64; 95% CI: 1.26, 5.55) were more often a decisive indication for continuous sedation for these patients. A palliative care team was consulted less often for noncancer patients (OR=0.45; 95% CI: 0.21, 0.96). Also, preceding sedation, euthanasia was discussed less often with noncancer patients (OR=0.42; 95% CI: 0.24, 0.73), whereas their relatives more often initiated discussion about euthanasia than relatives of cancer patients (OR=3.75; 95% CI: 1.26, 11.20). CONCLUSION: The practice of continuous palliative sedation in patients dying of cancer differs from patients dying of other diseases. These differences seem to be related to the less predictable course of noncancer diseases, which may reduce physicians' awareness of the imminence of death. Increased attention to noncancer diseases in palliative care practice and research is, therefore, crucial as is more attention to the potential benefits of palliative care consultation.Copyright © 2012 by Elsevier Inc. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Palliative sedation is a medical intervention aimed at relieving symptoms that can no longer be controlled by conventional treatment. Ample knowledge is available regarding the nature of such symptoms, but there is no in-depth information regarding how health care workers decide about palliative sedation., Objective: The study objective was to investigate considerations concerning the indications for continuous palliative sedation (CPS) and issues that influence these considerations., Design: The study consisted of qualitative interviews regarding patients who had recently received CPS., Setting/subjects: The study involved physicians and nurses working in general practice, nursing homes, and hospitals., Measurement: Analyses by a multidisciplinary research team used the constant comparative method., Results: Together with physical symptoms, psychological and existential suffering may combine to produce a refractory state for which other treatment options than CPS were not available or considered inappropriate. A limited life expectancy was by many considered crucial (e.g., to avoid hastening death) and by some less important (e.g., because the patient's suffering was considered to be key). Issues influencing the decision to use CPS related to patient preferences (e.g., dignity, not wanting to experience further suffering) or family issues (impact of suffering on family, family requesting CPS)., Conclusions: The indication for CPS typically originates from physical symptoms and nonphysical problems producing a refractory state in which a patient suffers unbearably. In such states, preferences of patients and families and the life expectancy criterion are weighed against the severity of refractory symptoms. Therefore the use of CPS is not only a response to the physical suffering of patients in the dying phase.

Background: The quality of care of patients dying in the hospital is often judged as insufficient. This article describes the protocol of a study to assess the quality of care of the dying patient and the contribution of an intervention targeted on staff nurses of inpatient wards of a large university hospital in the Netherlands., Methods/design: We designed a controlled before and after study. The intervention is the establishment of a network for palliative care nurse champions, aiming to improve the quality of hospital end-of-life care. Assessments are performed among bereaved relatives, nurses and physicians on seven wards before and after introduction of the intervention and on 11 control wards where the intervention is not applied. We focus on care provided during the last three days of life, covered in global ratings of the quality of life in the last three days of life and the quality of dying, and various secondary endpoints of treatment and care affecting quality of life and dying., Discussion: With this study we aim to improve the understanding of and attention for patients' needs, and the quality of care in the dying phase in the hospital and measure the impact of a quality improvement intervention targeted at nurses.

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.

Differences in the general focus of care among hospitals, nursing homes, and homes may affect the adequacy of end-of-life decision making for the dying. We studied end-of-life decision-making practices for cancer patients who died in each of these settings and assessed the impact of the Liverpool Care Pathway for the Dying Patient (LCP), a template for care in the dying phase. Physicians and relatives of 311 deceased cancer patients completed questionnaires. The LCP was introduced halfway through the study period. During the last three months of life, patients who died in hospital received anticancer therapy and medication to relieve symptoms more often than those in both other settings. During the last three days of life, patients who died in the hospital or nursing home received more medication than those who died at home. The LCP reduced the extent to which physicians used medication that might have hastened death. Relatives of patients who died in the hospital tended to be least positive about the patient's and their own participation in the decision making. We conclude that cancer patients who die in the hospital are more intensively treated during the last phase of life than those who die elsewhere. The LCP has an impact on the use of potentially life-shortening medication during the dying phase. Communication about medical decision making tends to be better in the nursing home and at home., (Copyright 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)