Assessment model for the justification of intrusive lifestyle interventions: literature study, reasoning and empirical testing.

BACKGROUND: In many countries health insurers, employers and especially governments are increasingly using pressure and coercion to enhance healthier lifestyles. For example by ever higher taxes on cigarettes and alcoholic beverages, and ever stricter smoke-free policies. Such interventions can enhance healthier behaviour, but when they become too intrusive, an unfree society can emerge. Which lifestyle interventions that use pressure or coercion are justifiable and which are not? We tried to develop an assessment model that can be used for answering this question, on a generally acceptable way, for all sorts of lifestyle interventions. METHODS: The intended assessment model was developed in three phases. In the first phase the model was theoretically developed on the basis of literature study and reasoning. In the second phase the model was empirically tested by assessing two detailed cases from everyday practice using the model. The model was improved again and again. In the third phase (publication phase) the 10(th) version of the model was developed while writing this article. RESULTS: An assessment model for the justification of intrusive lifestyle interventions. It comprises three components: (1) 12 assessment criteria (necessity, causality, responsibility, appropriate design, effectiveness, intrusiveness, burdens-benefits-ratio, fairness, support, complementary policies, verifiability, implementation capacity); (2) an assessment structure with three filters (design logic, effects and side effects, implementation); (3) a way of assessing (based on reasonableness and transparency). CONCLUSIONS: We have developed an assessment model for the justification of lifestyle interventions that use pressure or coercion to promote health. The correctness, completeness and practicality of the model are likely. Important principles for the justification are the logic and completeness of the underlying argumentation and the proper use of the available scientific information. Parties for and against a particular intervention could use the model to test and strengthen their argumentation and to improve the quality of the intervention.

Euthanasia and physician-assisted suicide in amyotrophic lateral sclerosis: a prospective study.

The objective of this study is to determine if quality of care, symptoms of depression, disease characteristics and quality of life of patients with amyotrophic lateral sclerosis (ALS) are related to requesting euthanasia or physician-assisted suicide (EAS) and dying due to EAS. Therefore, 102 ALS patients filled out structured questionnaires every 3 months until death and the results were correlated with EAS. Thirty-one percent of the patients requested EAS, 69% of whom eventually died as a result of EAS (22% of all patients). Ten percent died during continuous deep sedation; only one of them had explicitly requested death to be hastened. Of the patients who requested EAS, 86% considered the health care to be good or excellent, 16% felt depressed, 45% experienced loss of dignity and 42% feared choking. These percentages do not differ from the number of patients who did not explicitly request EAS. The frequency of consultations of professional caregivers and availability of appliances was similar in both groups. Our findings do not support continuous deep sedation being used as a substitute for EAS. In this prospective study, no evidence was found for a relation between EAS and the quality and quantity of care received, quality of life and symptoms of depression in patients with ALS. Our study does not support the notion that unmet palliative care needs are related to EAS.

Unbearable suffering and requests for euthanasia prospectively studied in end-of-life cancer patients in primary care.

BACKGROUND: An international discussion about whether or not to legally permit euthanasia and (or) physician assisted suicide (EAS) is ongoing. Unbearable suffering in patients may result in a request for EAS. In the Netherlands EAS is legally permitted, and unbearable suffering is one of the central compulsory criteria. The majority of EAS is performed in cancer patients in the primary care practice. In around one in every seven end-of-life cancer patients dying in the primary care setting EAS is performed. The prevalence of unbearable symptoms and overall unbearable suffering in relationship to explicit requests for EAS was studied in a cohort of end-of-life cancer patients in primary care. METHODS: A prospective study in primary care cancer patients estimated to die within six months was performed. Every two months suffering was assessed with the State-of-Suffering V (SOS-V). The SOS-V is a comprehensive instrument for quantitative and qualitative assessment of unbearable suffering related to 69 physical, psychological and social symptoms in five domains. RESULTS: Out of 148 patients who were asked to participate 76 (51%) entered the study. The studied population were 64 patients who were followed up until death; 27% explicitly requested EAS, which was performed in 8% of the patients. The final interview per patient was analyzed; in four patients the SOS-V was missing. Unbearable symptoms were present in 94% of patients with an explicit request for EAS and in 87% of patients without an explicit request. No differences were found in the prevalence of unbearable suffering for physical, psychological, social and existential symptoms, nor for overall unbearable suffering, between patients who did or who did not explicitly request EAS. CONCLUSIONS: In a population of end-of-life cancer patients cared for in primary care no differences in unbearable suffering were found between patients with and without explicit requests for EAS. The study raises the question whether unbearable suffering is the dominant motive to request for EAS. Most patients suffered from unbearable symptoms, indicating that the compulsory criterion of unbearable suffering may be met a priori in most end-of-life cancer patients dying at home, whether they request EAS or not.

Symptoms, unbearability and the nature of suffering in terminal cancer patients dying at home: a prospective primary care study.

BACKGROUND: Primary care physicians provide palliative home care. In cancer patients dying at home in the Netherlands (45% of all cancer patients) euthanasia in about one out of every seven patients indicates unbearable suffering. Symptom prevalence, relationship between intensity of symptoms and unbearable suffering, evolvement of symptoms and unbearability over time and quality of unbearable suffering were studied in end-of-life cancer patients in primary care. METHODS: 44 general practitioners during three years recruited cancer patients estimated to die within six months. Every two months patients quantified intensity as well as unbearability of 69 symptoms with the State-of-Suffering-V (SOS-V). Also overall unbearable suffering was quantified. The five-point rating scale ranged from 1 (not at all) to 5 (hardly can be worse). For symptoms assessed to be unbearable the nature of the suffering was additionally investigated with open-ended questions. The final interviews were analyzed; for longitudinal evolvement also the pre-final interviews were analyzed. Symptom intensity scores 4 and 5 were defined to indicate high intensity. Symptom unbearability scores 4 and 5 were defined to indicate unbearable suffering. Two raters categorized the qualitative descriptions of unbearable suffering. RESULTS: Out of 148 requested patients 51% participated; 64 patients were followed up until death. The SOS-V was administered at least once in 60 patients (on average 30 days before death) and at least twice in 33 patients. Weakness was the most frequent unbearable symptom (57%). Pain was unbearable in 25%. Pain, loss of control over one's life and fear of future suffering frequently were unbearable (89-92%) when symptom intensity was high. Loss of control over one's life, vomiting and not being able to do important things frequently were unbearable (52-80%) when symptom intensity was low. Unbearable weakness significantly increased between pre-final and final interview. Physical suffering, loss of meaning, loss of autonomy, experiencing to be a burden, fear of future suffering and worrying more frequently occurred in patients suffering unbearably overall. CONCLUSIONS: Weakness was the most prevalent unbearable symptom in an end-of-life primary care cancer population. Physical suffering, loss of meaning and loss of autonomy more frequently occurred in patients who suffered unbearably overall.

The role of patient safety culture in the causation of unintended events in hospitals.

AIMS AND OBJECTIVES: To examine whether the relationship between specialty and patient safety is mediated by safety culture. BACKGROUND: Research has shown that patient safety in hospitals varies by specialty. The safety culture among healthcare professionals in hospital units is believed to influence safety performance. If there is a mediation effect of safety culture in the relationship between specialty and safety, then safety culture could explain why units vary in performance. DESIGN: Cross-sectional observational study in 28 units of 20 hospitals in the Netherlands. Units were of three specialties: emergency medicine, surgery and internal medicine. METHODS: Safety culture was measured with the Dutch version of the Hospital Survey on Patient Safety Culture with 11 culture dimensions (n = 542; response 56%). Safety outcomes were types of unintended events (six types). Unintended events were collected through staff reporting (n = 1885 events). Data were examined using multilevel regression analysis. RESULTS: The overall safety culture in the units did not mediate the relationship between specialty and the safety outcomes (event types), but three of the 11 dimensions showed significant mediation on one or more event types: non-punitive response to error, hospital management support and willingness to report. CONCLUSIONS: Only a few safety culture dimensions mediated the relationship between specialty and some of the outcomes, with 'willingness to report' as the most important mediating factor. Our study did not give strong evidence that specialties differ in performance because of their safety cultures. More research into the causes of variation in patient safety between hospital units is needed. RELEVANCE TO CLINICAL PRACTICE: Our study could not give support for the claim that safety culture is a key factor affecting patient safety.

The broad spectrum of unbearable suffering in end-of-life cancer studied in dutch primary care.

BACKGROUND: Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients cared for in primary care. METHODS: Forty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering were quantitatively assessed (5-point scale) through patient interviews every two months with a comprehensive instrument. Scores of 4 (serious) or 5 (hardly can be worse) were defined unbearable. The last interviews before death were analyzed. Sources providing strength to bear suffering were identified through additional open-ended questions. RESULTS: Seventy six out of 148 patients (51%) requested to participate consented; the attrition rate was 8%, while 8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in patients with serious (score 4) overall unbearable suffering. Overall, half of the unbearable aspects involved the domain of traditional medical symptoms. The most frequent unbearable aspects were weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%). The other half of the unbearable aspects involved the domains of function, personhood, environment, and nature and prognosis of disease. The most frequent unbearable aspects were impaired activities, feeling dependent, help needed with housekeeping, not being able to do important things, trouble accepting the situation, being bedridden and loss of control (27%-55%). The combination of love and support was the most frequent source (67%) providing strength to bear suffering. CONCLUSIONS: Overall unbearable suffering occurred in one in every four end-of-life cancer patients. Half of the unbearable aspects involved medical symptoms, the other half concerned psychological, social and existential dimensions. Physicians need to comprehensively assess suffering and provide psychosocial interventions alongside physical symptom management.

Does public disclosure of quality indicators influence hospitals' inclination to enhance results?

OBJECTIVE: The national guideline on oesophageal carcinoma's recommendation of a minimum number of 10 resections per year and the intervention of the Dutch Health Care Inspectorate have highlighted hospitals' 'need to score' on the public quality indicator for the annual number of oesophageal resections. To determine whether low-volume hospitals are inclined to adjust their numbers, we studied the difference between the reported and actual numbers of oesophageal resections in 2005 and 2006. DESIGN: A retrospective cohort study. Hospitals were asked to submit all operative reports on resections from 2005 to 2006. Two pairs of evaluators independently labelled all anonymous operative reports from the selected hospitals as resection or non-resection. SETTING: Hospitals in the Netherlands. PARTICIPANTS: Ten hospitals that reported 10 or 11 resections in 2006, or an average of fewer than 10 resections per year in the period 2003-2006. INTERVENTIONS: None. MAIN OUTCOME MEASURE(S): Difference between the reported and actual numbers of oesophageal resections in 2005 and 2006. RESULTS: Oesophageal resection criteria were not met in 7% of the 179 operative reports from the 10 selected hospitals. The difference between the reported and actual numbers of resections in 2005 was not significant, while in 2006 it was. Of the hospitals studied, 70% actually performed fewer resections than they reported. CONCLUSION: Our results support the assumption that low-volume hospitals are inclined to adjust their numbers when, because outcomes are public, pressure to report a sufficient number is high. So, external verification of data is essential when this 'need to score' is high.

Relating faults in diagnostic reasoning with diagnostic errors and patient harm.

PURPOSE: The relationship between faults in diagnostic reasoning, diagnostic errors, and patient harm has hardly been studied. This study examined suboptimal cognitive acts (SCAs; i.e., faults in diagnostic reasoning), related them to the occurrence of diagnostic errors and patient harm, and studied the causes. METHOD: Four expert internists reviewed patient records of 247 dyspnea patients, using a specially developed questionnaire to detect SCAs. The patients were treated by 72 physicians between May 2007 and February 2008 in five Dutch hospitals. The findings of the record review were discussed with the treating physicians, and the causes of SCAs were classified using Reason's taxonomy of unsafe acts. Statistical analyses were performed with descriptive statistics and independent t tests to compare groups. Furthermore, a reliability study was conducted to assess the interrater reliability. RESULTS: SCAs occurred in 163 of 247 cases reviewed (66%). In 34 (13.8%) of all cases, a diagnostic error occurred, and in 28 (11.3%) cases, the patient was harmed. Cases with diagnostic errors or patient harm had more SCAs. However, in 10 (4.0%) of the cases, diagnostic errors or patient harm occurred, though there were no SCAs. The causes of SCAs were mostly mistakes (i.e., the planned action was incorrect). CONCLUSIONS: In cases with more SCAs, diagnostic errors and patient harm occurred more often, suggesting that the number of SCAs per case was predictive of the occurrence of these events. The most common causes were mistakes, meaning that physicians did not realize their actions were incorrect.

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

BACKGROUND: We 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. METHODS: A 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. RESULTS: Surgical 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. CONCLUSIONS: Surgical 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.

To what extent are adverse events found in patient records reported by patients and healthcare professionals via complaints, claims and incident reports?

BACKGROUND: Patient record review is believed to be the most useful method for estimating the rate of adverse events among hospitalised patients. However, the method has some practical and financial disadvantages. Some of these disadvantages might be overcome by using existing reporting systems in which patient safety issues are already reported, such as incidents reported by healthcare professionals and complaints and medico-legal claims filled by patients or their relatives. The aim of the study is to examine to what extent the hospital reporting systems cover the adverse events identified by patient record review. METHODS: We conducted a retrospective study using a database from a record review study of 5375 patient records in 14 hospitals in the Netherlands. Trained nurses and physicians using a method based on the protocol of The Harvard Medical Practice Study previously reviewed the records. Four reporting systems were linked with the database of reviewed records: 1) informal and 2) formal complaints by patients/relatives, 3) medico-legal claims by patients/relatives and 4) incident reports by healthcare professionals. For each adverse event identified in patient records the equivalent was sought in these reporting systems by comparing dates and descriptions of the events. The study focussed on the number of adverse event matches, overlap of adverse events detected by different sources, preventability and severity of consequences of reported and non-reported events and sensitivity and specificity of reports. RESULTS: In the sample of 5375 patient records, 498 adverse events were identified. Only 18 of the 498 (3.6%) adverse events identified by record review were found in one or more of the four reporting systems. There was some overlap: one adverse event had an equivalent in both a complaint and incident report and in three cases a patient/relative used two or three systems to complain about an adverse event. Healthcare professionals reported relatively more preventable adverse events than patients.Reports are not sensitive for adverse events nor do reports have a positive predictive value. CONCLUSIONS: In order to detect the same adverse events as identified by patient record review, one cannot rely on the existing reporting systems within hospitals.

Quality of patient record keeping: an indicator of the quality of care?

BACKGROUND: Patient record review of hospitalised patients is by far the most applied method to assess adverse events (AEs) in hospitals. The diligence with which information is recorded may influence the visibility of AEs. On the other hand, poor quality of the information in patient records may be a cause or a consequence of poor quality of care and may thus be associated with higher rates of AEs. The objective of this study was to assess the relation between the quality of patient records and the occurrence of AEs. METHODS: In this study, 7926 hospital admissions of 21 Dutch hospitals were analysed with a structured record review method. The occurrence of AEs, the presence of patient information and the quality of the present information (completeness, readability and adequacy) were assessed. Their association was analysed using multilevel logistic regression analyses. RESULTS: The absence of record components was associated with lower rates of AEs, suggesting that missing record components lead to an underassessment of AEs in record-review studies. In contrast, poor quality of the information present in patient records was associated with higher rates of AEs, implying that the quality of the present patient information is a predictor of the quality of care. CONCLUSIONS: Evidence-based standards and a (electronic) format for record keeping are necessary for standardisation of recording patient information. This will improve the completeness, readability, accessibility, accuracy and exchange of patient information between healthcare providers and institutions. Better registration of patient information will benefit the quality of the healthcare process and will reduce the risk of AEs.

Variation in the rates of adverse events between hospitals and hospital departments.

OBJECTIVE: The objective of this study was to analyze the variation in the rates of adverse events (AEs), and preventable AEs, between hospitals and hospital departments in order to investigate the room for improvement in reducing AEs at both levels. In addition, we explored the extent to which patient, department and hospital characteristics explain differences in the rates of AEs. DESIGN: Structured retrospective patient record review of hospital admissions. SETTING: Twenty-one Dutch hospitals. Population A representative random sample of 7113 hospital admissions in 2004. MAIN OUTCOME MEASURES: Variation in AEs, and preventable AEs, between hospitals and hospital departments and the explanatory factors of the variation. RESULTS: The rates of AEs varied between hospitals (P = 0.05) and hospital departments (P < 0.05). The rates of preventable AEs only varied significantly between hospital departments. The clustering of preventable AEs in hospital departments was more than twice that found in hospitals (ICC 9.5 versus 3.5%). The type of hospital explained 35% of the inter-hospital variance in AEs. Patient and department characteristics explained 23% of the inter-department variance in preventable AEs. CONCLUSIONS: In addition to interventions to improve the overall patient safety within a hospital, interventions tailored for specific departments are necessary to reduce their patient safety risks. Monitoring and comparing the performance of hospitals should not be limited to the hospital level, but should be extended to the individual department since there can be significant differences in the rates of preventable AEs between different departments within the same hospital.

Nature, occurrence and consequences of medication-related adverse events during hospitalization: a retrospective chart review in the Netherlands.

BACKGROUND: Medication-related adverse events (MRAEs) form a large proportion of all adverse events in hospitalized patients and are associated with considerable preventable harm. Detailed information on harm related to drugs administered during hospitalization is scarce. Knowledge of the nature and preventability of MRAEs is needed to prioritize and improve medication-related patient safety. OBJECTIVE: To provide information on the nature, consequences and preventability of MRAEs occurring during hospitalization in the Netherlands. STUDY DESIGN: Analysis of MRAEs identified in a retrospective chart review of patients hospitalized during 2004. METHODS: The records of 7889 patients admitted to 21 hospitals in 2004 were reviewed by trained nurses and physicians using a three-stage process. For each hospital, patient records of 200 discharged and 200 deceased patients were randomly selected and reviewed. For each patient record, characteristics of the patient and the admission were collected. After identification of an MRAE the physician reviewers determined the type, severity, preventability, drug category and excess length of stay associated with the MRAE. Data on additional interventions or procedures related to MRAEs were obtained by linking our data to the national hospital registration database. The excess length of stay and the additional medical procedures were multiplied by unit costs to estimate the total excess direct medical costs associated with the MRAE. RESULTS: In total, 148 MRAEs occurred in 140 hospital admissions. The incidence of MRAEs was 0.9% (95% CI 0.7, 1.2) and the incidence of preventable MRAEs was 0.2% (95% CI 0.1, 0.4) per hospital admission. The majority of non-preventable MRAEs were adverse drug reactions caused by cancer chemotherapy. Preventable MRAEs were most often found in relation to anticoagulant treatment administered in combination with NSAIDs. Both non-preventable and preventable MRAEs resulted in considerable excess length of hospital stay and costs. On average, MRAEs resulted in an excess length of stay of 6.2 days (95% CI 3.6, 8.8) and average additional costs of &U20AC;2507 (95% CI 1520, 3773). CONCLUSIONS: This study was the first to provide detailed information on MRAEs during hospital admissions in the Netherlands, which were associated with both considerable patient harm and additional medical costs. To increase patient safety, interventions need to be developed that reduce the burden of MRAEs. These interventions should target the areas with the highest risk of MRAEs, notably antibacterials, cancer treatment, anticoagulant treatment and drug therapy in elderly patients.

Patient record review of the incidence, consequences, and causes of diagnostic adverse events.

BACKGROUND: Diagnostic errors often result in patient harm. Previous studies have shown that there is large variability in results in different medical specialties. The present study explored diagnostic adverse events (DAEs) across all medical specialties to determine their incidence and to gain insight into their causes and consequences by comparing them with other AE types. METHODS: A structured review study of 7926 patient records was conducted. Randomly selected records were reviewed by trained physicians in 21 hospitals across the Netherlands. The method used in this study was based on the well-known protocol developed by the Harvard Medical Practice Study. All AEs with diagnostic error as the main category were selected for analysis and were compared with other AE types. RESULTS: Diagnostic AEs occurred in 0.4% of hospital admissions and represented 6.4% of all AEs. Of the DAEs, 83.3% were judged to be preventable. Human failure was identified as the main cause (96.3%), although organizational- and patient-related factors also contributed (25.0% and 30.0%, respectively). The consequences of DAEs were more severe (higher mortality rate) than for other AEs (29.1% vs 7.4%). CONCLUSIONS: Diagnostic AEs represent an important error type, and the consequences of DAEs are severe. The causes of DAEs were mostly human, with the main causes being knowledge-based mistakes and information transfer problems. Prevention strategies should focus on training physicians and on the organization of knowledge and information transfer.

Requests for euthanasia: origin of suffering in ALS, heart failure, and cancer patients.

In The Netherlands, relatively more patients (20%) with amyotrophic lateral sclerosis (ALS) die due to euthanasia or physician-assisted suicide (EAS) compared with patients with cancer (5%) or heart failure (0.5%). We wanted to gain insight into the reasons for ALS patients requesting EAS and compare these with the reasons of cancer and heart failure patients. Knowing disease-specific reasons for requesting EAS may improve palliative care in these vulnerable patients. The data used in the present study were derived from the Support and Consultation in Euthanasia in The Netherlands (SCEN) evaluation study. This study provided consultation reports and questionnaires filled out by the attending physicians from 3,337 consultations conducted by SCEN physicians in situations where a patient requested EAS. For this study we selected data on all ALS patients (n = 51), all heart failure patients (n = 61), and a random sample of 73 cancer patients. The most frequently reported reasons for unbearable suffering were: fear of suffocation (45%) and dependency (29%) in ALS patients, pain (46%) and fatigue (28%) in cancer patients, and dyspnea (52%) and dependency (37%) in heart failure patients. Somatic complaints were reported more frequently as a reason for EAS by cancer patients [odds ratio (OR) 0.20, 95% confidence interval (CI) 0.09-0.46] and heart failure patients [OR 0.16, 95% CI 0.05-0.46] than by ALS patients. ALS patients should be helped in a timely fashion to cope with psychosocial symptoms, e.g., by informing them about the low risk of suffocation in the terminal phase and the possible means of preventing this.

Education on end-of-life care in the medical curriculum: students' opinions and knowledge.

OBJECTIVES: The aims of this study were to investigate: (1) opinions of medical students regarding quantity and content of education on end-of-life care in the curriculum, (2) medical students' knowledge of different aspects of the euthanasia act, and (3) factors associated with positive opinions about the quantity and content of education on end-of-life care in the curriculum. METHODS: A total of 204 medical students received a questionnaire; 176 completed it (response rate, 86%). RESULTS: Approximately half of the students (55%) considered the quantity of end-of-life care education in the curriculum moderate; 35% rated it as good. Half of the students rated the content of end-of-life care education as moderate (50%); 47% rated it as good. Fourteen percent of the students gave correct answers to 6 or 7 of the 8 questions about the euthanasia act. Students who took the elective course "Terminal and Palliative Care," students who had experience with a patient requesting euthanasia and physician-assisted suicide in their personal lives, and students with more knowledge of the euthanasia act were more positive about the quantity of end-of-life care education. Students who completed fewer clerkships and totally agreed with the statement, "Everyone has the right to decide about their own life and death" were more positive about the content on end-of-life care education. CONCLUSIONS: The data of this study suggest that more attention can and should be paid to education on end-of-life care in the medical curriculum, so students are well prepared to provide adequate end-of-life care.

Awareness and use of practice guidelines on medical end-of-life decisions in Dutch hospitals.

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.

Development and dissemination of institutional practice guidelines on medical end-of-life decisions in Dutch health care institutions.

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.

The inter-rater agreement of retrospective assessments of adverse events does not improve with two reviewers per patient record.

OBJECTIVE: To evaluate the inter-rater agreement of the record review process of the Dutch Adverse Event study, which we aimed to improve by the involvement of two independent physician reviewers per record instead of one including a consensus procedure in case of disagreement. METHODS: The inter-rater agreement within pairs of physicians (independent review between physician A+B) and between pairs of physicians (independent review between physician A+B and C+D) was measured to evaluate the record review process with two physicians including a consensus procedure, with 4,272 and 119 records, respectively. RESULTS: The inter-rater agreement within pairs of physicians was substantial for the determination of adverse events (AEs) with a kappa of 0.64 (95% confidence interval [CI]: 0.61, 0.68). The inter-rater agreement between pairs of physicians was fair for the determination of AEs with a kappa of 0.25 (95% CI: 0.05, 0.45). CONCLUSION: A record review process with two physicians per record including a consensus procedure to assess AEs is not more reliable than a record review process with one physician. Retrospective estimates of incidence of AEs from record review studies should be interpreted with caution. Improvement of the method is necessary for monitoring incidence of AEs over time at a national level.

Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V.

BACKGROUND: Unbearable suffering is an important issue in end-of-life decisions. However, there has been no systematic, prospective, patient-oriented research which has focused on unbearable suffering, nor is there a suitable measurement instrument. This article describes the methodological development of a quantitative instrument to measure the nature and intensity of unbearable suffering, practical aspects of its use in end-stage cancer patients in general practice, and studies content validity and psychometric properties. METHODS: Recognizing the conceptual difference between unbearability of suffering and extent or intensity of suffering, we developed an instrument. The compilation of aspects considered to be of importance was based on a literature search. Psychometric properties were determined on results of the first interviews with 64 end-stage cancer patients that participated in a longitudinal study in the Netherlands. RESULTS: The instrument measures five domains: medical signs and symptoms, loss of function, personal aspects, aspects of environment, and nature and prognosis of the disease. Sixty nine aspects were investigated, and an overall score was asked. In 64 end-stage cancer patients the instrument was used in total 153 times with an average interview time varying from 20-40 minutes. Cronbachs alpha's of the subscales were in majority above 0.7. The sum scores of (sub)scales were correlated strongly to overall measures on suffering. CONCLUSION: The SOS-V is an instrument for measuring the unbearability of suffering in end-stage cancer patients with good content validity and psychometric properties, which is feasible to be used in practice. This structured instrument makes it possible to identify and study unbearable suffering in a quantitative and patient-oriented way.