Gerrit van der Wal

End-of-life decision-making in six European countries: descriptive study

BACKGROUND Empirical data about end-of-life decision-making practices are scarce. We aimed to investigate frequency and characteristics of end-of-life decision-making practices in six European countries: Belgium, Denmark, Italy, the Netherlands, Sweden, and Switzerland. METHODS In all participating countries, deaths reported to death registries were stratified for cause (apart from in Switzerland), and samples were drawn from every stratum. Reporting doctors received a mailed questionnaire about the medical decision-making that had preceded the death of the patient. The data-collection procedure precluded identification of any of the doctors or patients. All deaths arose between June, 2001, and February, 2002. We weighted data to correct for stratification and to make results representative for all deaths: results were presented as weighted percentages. FINDINGS The questionnaire response rate was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. Total number of deaths studied was 20480. Death happened suddenly and unexpectedly in about a third of cases in all countries. The proportion of deaths that were preceded by any end-of-life decision ranged between 23% (Italy) and 51% (Switzerland). Administration of drugs with the explicit intention of hastening death varied between countries: about 1% or less in Denmark, Italy, Sweden, and Switzerland, 1.82% in Belgium, and 3.40% in the Netherlands. Large variations were recorded in the extent to which decisions were discussed with patients, relatives, and other caregivers. INTERPRETATION Medical end-of-life decisions frequently precede dying in all participating countries. Patients and relatives are generally involved in decision-making in countries in which the frequency of making these decisions is high.

Psychosocial risk factors for neck pain: A systematic review

BACKGROUND Neck pain, which is assumed to be a multifactorial disease, is a major problem in modern society. METHODS To identify the most important psychosocial risk factors for neck pain, a systematic review of the literature was carried out. The methodological quality of all studies in the review was assessed. Four levels of evidence were defined to assess the strength of evidence for potential risk factors for neck pain (strong, moderate, some or inconclusive evidence). RESULTS Some evidence was found for a positive relationship between neck pain and high quantitative job demands, low social (coworker) support, low job control, high and low skill discretion and low job satisfaction. Inconclusive evidence was found for high job strain, low supervisor support, conflicts at work, low job security, and limited rest break opportunities. CONCLUSIONS The procedure of the assessment of the methodological quality and the rating system applied to distinguish between high- and low-score studies, had a considerable influence on the level of evidence, indicating that changes in this procedure may have a major impact on the overall conclusions of this review.

Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001

Empirical data on the rate of euthanasia, physician-assisted suicide, and other end-of-life decisions have greatly contributed to the debate about the role of such practices in modern health care. In the Netherlands, the continuing debate about whether and when physician-assisted dying is acceptable seems to be resulting in a gradual stabilisation of end-of-life practices. We replicated interview and death-certificate studies done in 1990 and 1995 to investigate whether end-of-life practices had altered between 1995 and 2001. Since 1995, the demand for physician-assisted death has not risen among patients and physicians, who seem to have become somewhat more reluctant in their attitude towards this practice.

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

Context Terminal sedation, the administration of sedating medications with cessation of nutrition and hydration, is an option for care of patients who are nearing death. However, little is known about physicians experience with terminal sedation. Contribution Of more than 400 physicians in the Netherlands who completed a survey about end-of-life care, just over half had ever used terminal sedation. Common reasons for using terminal sedation were relief of pain, agitation, or dyspnea. Hastening death was the primary intention in only 17% of reported cases. Caution Because attitudes and practices regarding terminal sedation vary geographically and culturally, it is unclear whether these results are generalizable outside of the Netherlands. The Editors Patients nearing death frequently have symptoms such as dyspnea, agitation, pain, and anxiety (1, 2). One of the most important goals of the medical care provided to these patients is the alleviation of these symptoms (3). If treatment with analgesic or anxiolytic agents is not effective, sedatives are sometimes used as an alternative to render patients unconscious and then oblivious to their symptoms (4, 5). Subsequently, if artificial nutrition and hydration are not given, death will follow soon. The ethical debate about this practice focuses on the extent to which it should be considered an end-of-life decision that possibly or certainly hastens death. Previous studies have explored the differences and similarities with other end-of-life decisions, such as euthanasia and physician-assisted suicide (6-19). However, little information exists on the medical practice of deep sedation with the forgoing of artificial nutrition or hydration in patients nearing death. Estimates about the frequency of deep sedation at the end of life vary from 15% to more than 60%, depending on the settings studied and the definitions used (4, 5, 20-26). The terminology used reflects these differences in definition of the practice of deep sedation at the end of life. Although terminal sedation is the most commonly used term, other frequently used terms, which demonstrate the different perspectives from which this practice is viewed, are sedation for intractable distress in the imminently dying, palliative sedation therapy, slow euthanasia, opioid coma, or anesthetic coma (6, 27-30). The present study describes the practice of terminal sedation in the Netherlands. This study was part of the evaluation of the notification procedure for physician-assisted death in the Netherlands, which was commissioned by the ministers of Health and Justice (31). Methods Respondent Characteristics We interviewed a nationwide sample of 410 physicians: 208 clinical specialists, 125 general practitioners, and 77 nursing home physicians. In the Netherlands, clinical specialists provide hospital care, general practitioners provide nonspecialized care outside the hospital, and nursing home physicians work in long-term care institutions mainly for elderly people. The proportions of deaths in these health care settings are approximately 35%, 42%, and 23%, respectively. The specialties involved in our study covered about 95% of all deaths in the Netherlands in 2001. The respondents were selected according to the following criteria: They were required to be in active practice at the time of the interview and to have actively practiced medicine within the registered specialty for the past 2 years in the same setting. All addresses were taken from the professional registries of the relevant specialties. To arrive at the desired number of 410 physicians, we sampled 482 physicians. Seventy-two physicians (15%) declined to take part in the study: 17% of clinical specialists, 18% of general practitioners, and 3% of nursing home physicians. Nonresponders did not differ in age from responders. Face-to-face interviews were conducted by experienced part-time working or recently retired physicians who were trained to administer the structured questionnaires. All interviews took place between March 2002 and October 2002. We applied strict rules to ensure the anonymity of all physicians and patients studied. Interview Process The interview schedule addressed experiences with end-of-life decision making (Appendix Figure [Questionnaire on Terminal Sedation]). Terminal sedation was defined as the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration. The respondents were first asked whether they had ever used terminal sedation and, subsequently, how often they had performed this practice in 2000 and 2001. Additional questions about the practice of terminal sedation concerned the physicians most recent patient to have received terminal sedation (n= 211). The physicians were asked about the patients characteristics; whether or not sedation or the forgoing of artificial nutrition or hydration had been discussed with the patient, family, or other health care professionals; the drugs used; the intention of the physician; the estimated life-shortening effect; and whether euthanasia was discussed during the decision process. Appendix Figure. Terminal sedation: frequencies and case characteristics. Statistical Analysis We calculated all estimates about the occurrence of terminal sedation in the Netherlands by weighting the estimates of individual physicians. Weighting factors were based on differences in sampling fractions and response rates for the different specialties. These sampling fractions were 125 of 7027 for general practitioners, 77 of 810 for nursing home physicians, 34 of 394 for cardiologists, 34 of 545 for neurologists, 69 of 1321 for specialists in internal medicine, 35 of 325 for pulmonologists, and 36 of 769 for surgeons. The probabilities used to determine sampling weights were 1 in 56 for general practitioners, 1 in 11 for nursing home physicians, 1 in 12 for cardiologists, 1 in 16 for neurologists, 1 in 19 for specialists in internal medicine, 1 in 9 for pulmonologists, and 1 in 21 for surgeons. Data on the 211 most recent patients seen by physicians were not weighted. All analyses were done by using SPSS software, version 10.0 (SPSS, Inc., Chicago, Illinois). Role of the Funding Sources The sponsors approved the study design but were not involved in the collection, analysis, or interpretation of the data or in the decision to submit the manuscript for publication. Results Most of the 410 physicians interviewed (76%) were men; 51% were clinical specialists, 30% were general practitioners, and 19% were nursing home physicians (Tables 1 and 2). Of all physicians, a weighted percentage of 52% (95% CI, 48% to 57%) had ever practiced terminal sedation. This percentage was 55% (CI, 49% to 62%) for clinical specialists, 48% (CI, 39% to 57%) for general practitioners, and 75% (CI, 64% to 83%) for nursing home physicians. We asked all interviewed physicians to estimate the total number of times they performed terminal sedation in 2000 and 2001. These numbers were extrapolated to the total number of 140377 deaths in 2001 by multiplying them with the weighting factor for each specialty and assuming that the numbers were similar for the 5% of deaths covered by hospital doctors from specialties other than the ones included in our study. This extrapolation suggests that physicians used terminal sedation in 10.0% (CI, 9.1% to 10.8%) of all deaths in that year. Of the 10.0% of deaths preceded by terminal sedation, 5.5% (CI, 5.0% to 6.1%) were attended by clinical specialists, 2.5% (CI, 1.9% to 3.2%) by general practitioners, and 2.0% (CI, 1.7% to 2.2%) by nursing home physicians. Table 1. Characteristics of Interviewed Physicians Table 2. Proportion of Deaths per Specialty Of all physicians who had ever used terminal sedation, 211 provided information about their most recent cases of terminal sedation (103 clinical specialists, 53 general practitioners, and 55 nursing home physicians). Of these most recent cases, 78% (CI, 72% to 83%) involved patients 65 years of age or older and 54% (CI, 47% to 60%) involved patients who had cancer (Table 3). Clinical specialists and nursing home physicians also frequently reported practicing terminal sedation in patients with cardiovascular diseases. The most frequently mentioned reasons for using terminal sedation were the alleviation of pain (51% [CI, 44% to 58%]), agitation (38% [CI, 32% to 45%]), dyspnea (38% [CI, 32% to 45%]), and anxiety (11% [CI, 8% to 16%]). Table 3. Characteristics of the Sample Consisting of Each Physicians Most Recent Case of Terminal Sedation In 59% (CI, 52% to 66%) of the most recent cases seen by physicians, the physician had discussed the sedation with the patient (Table 4); in 33% (CI, 27% to 39%) of the cases, the patient had requested deep sedation. The main reasons for not discussing deep sedation with the patient were the fact that the patient was incompetent or subcomatose (25% [CI, 20% to 31%]). The decision to forgo artificial nutrition or hydration was discussed less frequently with the patient; the respondents reported discussing this topic in 34% (CI, 28% to 41%) of their most recent cases and receiving a request from the patient to forgo artificial nutrition or hydration in 9% (CI, 6% to 13%). Next to patient incompetence (37% [CI, 31% to 44%]), another frequently mentioned reason for not discussing the decision to forgo artificial nutrition or hydration was that many physicians perceived this not as optional but rather as a given; they considered terminal sedation to preclude the concomitant use of artificial nutrition and hydration (23% [CI, 18% to 29%]) (data not shown). Table 4. Discussion about Deep Sedation and Forgoing Artificial Nutrition or Hydration in Each Physicians Most Recent Case of Terminal Sedation, by Physician Specialty The decision to use sedation was discussed with relatives of the patient in 93% (CI, 89% to 96%) of the most recent cases seen by physician

Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups

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.

High Quantitative Job Demands and Low Coworker Support As Risk Factors for Neck Pain : Results of a Prospective Cohort Study

Study Design. A 3-year prospective cohort study among 1334 workers was conducted. Objective. To determine whether the work-related psychosocial factors of quantitative job demands, conflicting job demands, skill discretion, decision authority, supervisor support, coworker support, and job security are risk factors for neck pain. Summary of Background Data. Among the various risk factors for neck pain, work-related psychosocial factors play a major role. Previous studies on risk factors for neck pain often had a cross-sectional design, and did not take both physical and psychosocial factors into account. Methods. At baseline, data on work-related psychosocial factors were collected by means of a questionnaire. During the 3-year follow-up period, data on the occurrence of neck pain were collected by means of postal questionnaires. Individuals without neck pain at baseline were selected for the analyses. Cox regression analysis was applied to examine the relation between the work-related psychosocial factors and the cumulative incidence of neck pain. Adjustments were made for various physical factors and individual characteristics. Results. The analysis included 977 patients. Altogether, 141 workers (14.4%) reported that they had experienced neck pain at least once during the 3-year follow-up period. The relation of neck pain to high quantitative job demands (relative risk [RR], 2.14; 95% confidence interval [CI], 1.28–3.58) and low coworker support (RR, 2.43; 95% CI, 1.11–5.29) was statistically significant. An increased risk was found for low decision authority in relation to neck pain (RR, 1.60; 95% CI, 0.74–3.45), but this relation was not statistically significant. Conclusions. High quantitative job demands and low coworker support are independent risk factors for neck pain. There are indications that another risk factor for neck pain is low decision authority.

Medical end-of-life decisions made for neonates and infants in the Netherlands

BACKGROUND Advances in neonatal intensive care have lowered the neonatal death rate. There are still some severely ill neonates and infants, however, for whom the application of all possible life-prolonging treatment modalities may be questioned. METHODS We did two studies in the Netherlands. In the first we sent questionnaires to physicians who had attended 338 consecutive deaths (August-November, 1995) within the first year of life (death-certificate study), and in the second we interviewed 31 neonatologists or paediatric intensive-care specialists and 35 general paediatricians. The response rates were 88% and 99%, respectively. FINDINGS In the death-certificate study, 57% of all deaths had been preceded by a decision to forgo life-sustaining treatment; this decision was accompanied by the administration of potentially life-shortening drugs to alleviate pain or other symptoms in 23%, and by the administration of drugs with the explicit aim of hastening death in 8%. A drug was given explicitly to hasten death to neonates not dependent on life-sustaining treatment in 1% of all death cases. No chance of survival was the main motive in 76% of all end-of-life decisions, and a poor prognosis was the main motive in 18%. The interview study showed that parents had been involved in making 79% of decisions. The physicians consulted colleagues about 88% of decisions. Most paediatricians favoured formal review of medical decisions by colleagues together with ethical or legal experts. INTERPRETATION Death among neonates and infants is commonly preceded by medical end-of-life decisions. Most Dutch paediatricians seem to find prospects for survival and prognostic factors relevant in such decisions. Public control by a committee of physicians, paediatricians, ethicists, and legal experts is widely endorsed by paediatricians.

Design of a retrospective patient record study on the occurrence of adverse events among patients in Dutch hospitals.

BackgroundVarious international studies have shown that a substantial number of patients suffer from injuries or even die as a result of care delivered in hospitals. The occurrence of injuries among patients caused by health care management in Dutch hospitals has never been studied systematically. Therefore, an epidemiological study was initiated to determine the incidence, type and impact of adverse events among discharged and deceased patients in Dutch hospitals.Methods/DesignThree stage retrospective patient record review study in 21 hospitals of 8400 patient records of discharged or deceased patients in 2004. The records were reviewed by trained nurses and physicians between August 2005 and October 2006. In addition to the determination of presence, the degree of preventability, and causes of adverse events, also location, timing, classification, and most responsible specialty of the adverse events were measured. Moreover, patient and admission characteristics and the quality of the patient records were recorded.DiscussionIn this paper we report on the design of the retrospective patient record study on the occurrence of adverse events in Dutch hospitals. Attention is paid to the strengths and limitations of the study design. Furthermore, alterations made in the original research protocol in comparison with former international studies are described in detail.

Direct medical costs of adverse events in Dutch hospitals

BackgroundUp to now, costs attributable to adverse events (AEs) and preventable AEs in the Netherlands were unknown. We assessed the total direct medical costs associated with AEs and preventable AEs in Dutch hospitals to gain insight in opportunities for cost savings.MethodsTrained nurses and physicians retrospectively reviewed 7926 patient records in 21 hospitals. Additional patient information of 7889 patients was received from the Dutch registration of hospital information. Direct medical costs attributable to AEs were assessed by measuring excess length of stay and additional medical procedures after an AE occurred. Costs were valued using Dutch standardized cost prices.ResultsThe annual direct medical costs in Dutch hospitals were estimated at a total of euro 355 million for all AEs and euro 161 million for preventable AEs in 2004. The total number of hospital admissions in which a preventable AE occurred was 30,000 (2.3% of all admissions) and more than 300,000 (over 3% of all bed days) bed days were attributable to preventable AEs in 2004. Multilevel analysis showed that variance in direct medical costs was not determined by differences between hospitals or hospital departments.ConclusionThe estimates of the total preventable direct medical costs of AEs indicate that they form a substantial part (1%) of the expenses of the national health care budget and are of importance to hospital management. The cost driver of the direct medical costs is the excess length of stay (including readmissions) in a hospital. Insight in which determinants are associated with high preventable costs will offer useful information for policymakers and hospital management to determine starting points for interventions to reduce the costs of preventable AEs.

The incidence, root-causes, and outcomes of adverse events in surgical units: implication for potential prevention strategies

BackgroundWe need to know the scale and underlying causes of surgical adverse events (AEs) in order to improve the safety of care in surgical units. However, there is little recent data. Previous record review studies that reported on surgical AEs in detail are now more than ten years old. Since then surgical technology and quality assurance have changed rapidly. The objective of this study was to provide more recent data on the incidence, consequences, preventability, causes and potential strategies to prevent AEs among hospitalized patients in surgical units.MethodsA structured record review study of 7,926 patient records was carried out by trained nurses and medical specialist reviewers in 21 Dutch hospitals. The aim was to determine the presence of AEs during hospitalizations in 2004 and to consider how far they could be prevented. Of all AEs, the consequences, responsible medical specialty, causes and potential prevention strategies were identified. Surgical AEs were defined as AEs attributable to surgical treatment and care processes and were selected for analysis in detail.ResultsSurgical AEs occurred in 3.6% of hospital admissions and represented 65% of all AEs. Forty-one percent of the surgical AEs was considered to be preventable. The consequences of surgical AEs were more severe than for other types of AEs, resulting in more permanent disability, extra treatment, prolonged hospital stay, unplanned readmissions and extra outpatient visits. Almost 40% of the surgical AEs were infections, 23% bleeding, and 22% injury by mechanical, physical or chemical cause. Human factors were involved in the causation of 65% of surgical AEs and were considered to be preventable through quality assurance and training.ConclusionsSurgical AEs occur more often than other types of AEs, are more often preventable and their consequences are more severe. Therefore, surgical AEs have a major impact on the burden of AEs during hospitalizations. These findings concur with the results from previous studies. However, evidence-based solutions to reduce surgical AEs are increasingly available. Interventions directed at human causes are recommended to improve the safety of surgical care. Examples are team training and the surgical safety checklist. In addition, specific strategies are needed to improve appropriate use of antibiotic prophylaxis and sustainable implementation of hygiene guidelines to reduce infections.