Recruiting end-of-life cancer patients in the Netherlands for a study on suffering and euthanasia requests.

BACKGROUND: In the Netherlands, GPs performed euthanasia or physician-assisted suicide (EAS) in ∼1 of 10 end-of-life cancer patients in their care. Of all explicit requests for EAS directed at GPs, ∼44% resulted in EAS. However, the suffering of patients who do and do not request EAS has never been studied. An important barrier for such research is the low prevalence of end-of-life cancer patients per practice (on average two/year). We studied whether it is possible to recruit end-of-life cancer patients, following-up for requests for EAS (if any), in an interview study in general practice, whether selection occurred and which were the threats and opportunities to recruitment. Our target was to recruit at least 50 patients. METHODS: Characteristics of all eligible patients were monitored. RESULTS: One in every three eligible patients were recruited by 44 GPs in a 3-year inclusion period, resulting in 64 patients in the interview study with follow-up until death. The prevalence of explicit requests for EAS was higher (27%; P = 0.026) in the interview sample, and the presence of a depressed mood according to the GP was lower (5%; P = 0.013) than in the sample with eligible but not participating patients. CONCLUSIONS: Recruitment of slightly more than the minimal target number of end-of-life cancer patients in this study in general practice was realized. Monitoring of all eligible patients permitted to evaluate the selection which occurred. Recruitment through GPs who were direct professional colleagues of one of the researchers was a positive recruitment factor.

Depression and explicit requests for euthanasia in end-of-life cancer patients in primary care in the Netherlands: a longitudinal, prospective study.

BACKGROUND: In the Netherlands, many (45%) cancer patients die at home, in the care of GPs. About 1 out of 10 end-of-life cancer deaths is hastened by GPs through euthanasia or physician-assisted suicide. However, the relationship between depression and requests for euthanasia has never been prospectively studied directly in primary care. OBJECTIVE: This study aimed to assess the prevalence of depression in end-of-life cancer patients requesting euthanasia in primary care, as well as to assess the relationship between depression and requesting euthanasia. METHODS: Primary care patients with incurable cancer and an estimated life expectancy of half a year or shorter were interviewed every 2 months, using standardized psychometric instruments. Also, non-recruited eligible patients were monitored. RESULTS: Out of 258 eligible patients, 76 patients were recruited, of whom 64 patients were followed up until death. Of these, 27% (n = 17) explicitly requested euthanasia. One patient suffered from major depression. According to the depression subscale of the Hospital Anxiety and Depression Scale, 47% of the patients who explicitly requested euthanasia versus 28% of those without an euthanasia request suffered from a depressed mood at inclusion; the difference was not significant (P = 0.2). Corresponding figures for the last interview before death were 40% and 41% (P = 0.6). CONCLUSIONS: Major depression was not a major factor in explicit requests for euthanasia in end-of-life cancer patients in primary care. Further depressed mood was not associated with explicitly requesting euthanasia in this patient group, although statistical underpower cannot be ruled out in this small sample.

Exploring the causes of adverse events in hospitals and potential prevention strategies.

OBJECTIVES: To examine the causes of adverse events (AEs) and potential prevention strategies to minimise the occurrence of AEs in hospitalised patients. METHODS: For the 744 AEs identified in the patient record review study in 21 Dutch hospitals, trained reviewers were asked to select all causal factors that contributed to the AE. The results were analysed together with data on preventability and consequences of AEs. In addition, the reviewers selected one or more prevention strategies for each preventable AE. The recommended prevention strategies were analysed together with four general causal categories: technical, human, organisational and patient-related factors. RESULTS: Human causes were predominantly involved in the causation of AEs (in 61% of the AEs), 61% of those being preventable and 13% leading to permanent disability. In 39% of the AEs, patient-related factors were involved, in 14% organisational factors and in 4% technical factors. Organisational causes contributed relatively often to preventable AEs (93%) and AEs resulting in permanent disability (20%). Recommended strategies to prevent AEs were quality assurance/peer review, evaluation of safety behaviour, training and procedures. For the AEs with human and patient-related causes, reviewers predominantly recommended quality assurance/peer review. AEs caused by organisational factors were considered preventable by improving procedures. DISCUSSION: Healthcare interventions directed at human causes are recommended because these play a large role in AE causation. In addition, it seems worthwhile to direct interventions on organisational causes because the AEs they cause are nearly always believed to be preventable. Organisational factors are thus relatively easy to tackle. Future research designs should allow researchers to interview healthcare providers that were involved in the event, as an additional source of information on contributing factors.

Trends and determinants of end-of-life practices in ALS in the Netherlands.

BACKGROUND: In the Netherlands, the proportion of patients with amyotrophic lateral sclerosis (ALS) who choose the option of euthanasia or physician-assisted suicide (PAS) is relatively high (20%). The objective of this study was to determine which factors influence end-of-life practices in ALS and whether rates are changing over time. METHODS: In a cohort survey, 204 physicians and 198 informal caregivers (response rates 75% and 80%) of patients with ALS who died between 2000 and 2005 filled out questionnaires of the end-of-life circumstances of the patient. Results were compared with those of a similar study performed during the period 1994-1998. RESULTS: In 2000-2005, 16.8% of the patients decided on euthanasia or PAS compared to 20.2% in 1994-1998. Thirty-one (14.8%) patients died during continuous deep sedation (CDS) in 2000-2005. Euthanasia or PAS, but not CDS, were significantly associated with religion not being important to the patient, being more educated, and dying at home. Euthanasia or PAS were not associated with quality of care items or symptoms of depression. Loss of function was similar in both groups. Informal caregivers of patients who died after euthanasia or PAS more frequently reported fear of choking (p = 0.003), no chance of improvement (p = 0.001), loss of dignity (p = 0.02), being dependent on others (p = 0.002), and fatigue (p = 0.018) as reasons for shortening life. Hopelessness was associated with euthanasia or PAS, as with CDS. CONCLUSION: The frequency of euthanasia or physician-assisted suicide (PAS) in amyotrophic lateral sclerosis (ALS) appeared stable over time and 1 in 7 patients died during CDS. CDS is relatively common in ALS, but appears to have other determinants than euthanasia or PAS. Subjective factors may be important in explaining euthanasia or PAS in ALS.

Measuring patient safety culture: an assessment of the clustering of responses at unit level and hospital level.

OBJECTIVES: To test the claim that the Hospital Survey on Patient Safety Culture (HSOPS) measures patient safety culture instead of mere individual attitudes and to determine the most appropriate level (individual, unit or hospital level) for interventions aimed at improving the culture of patient safety. METHODS: National patient safety culture data were used from 1889 hospital staff working at 87 units in 19 hospitals across The Netherlands. The multilevel structure of the variation of responses to the 11 dimensions of the questionnaire was explored by fitting three-level random intercept models: individual, unit and hospital level. RESULTS: The unit level was the dominating level for the clustering of responses to the 11 dimensions. Intraclass correlations (ICC) at unit level ranged from 4.3 to 31.7, representing considerable higher-level variation. For three dimensions of patient safety culture, there was significant clustering of responses at hospital level as well: (1) Feedback about and learning from error, (2) Teamwork across hospital units and (3) Non-punitive response to error. CONCLUSIONS: At a conceptual level, the detection of clustering of responses within units and hospitals confirms the claim that the HSOPS measures group culture and not just individual attitudes. In addition, the results have implications for interventions on patient safety culture. Improvement efforts should be directed at their most relevant organisational level. In general, improvement efforts on patient safety culture should be addressed at the unit level, rather than the individual or hospital level.

Adverse events and potentially preventable deaths in Dutch hospitals: results of a retrospective patient record review study.

OBJECTIVE: This study determined the incidence, type, nature, preventability and impact of adverse events (AEs) among hospitalised patients and potentially preventable deaths in Dutch hospitals. METHODS: Using a three-stage retrospective record review process, trained nurses and doctors reviewed 7926 admissions: 3983 admissions of deceased hospital patients and 3943 admissions of discharged patients in 2004, in a random sample of 21 hospitals in the Netherlands (4 university, 6 tertiary teaching and 11 general hospitals). A large sample of deceased patients was included to determine the occurrence of potentially preventable deaths in hospitals more precisely. RESULTS: One or more AEs were found in 5.7% (95% CI 5.1% to 6.4%) of all admissions and a preventable AE in 2.3% (95% CI 1.9% to 2.7%). Of all AEs, 12.8% resulted in permanent disability or contributed to death. The proportion of AEs and their impact increased with age. More than 50% of the AEs were related to surgical procedures. Among deceased hospital patients, 10.7% (95% CI 9.8% to 11.7%) had experienced an AE. Preventable AEs that contributed to death occurred in 4.1% (95% CI 3.5% to 4.8%) of all hospital deaths. Extrapolating to a national level, between 1482 and 2032 potentially preventable deaths occurred in Dutch hospitals in 2004. CONCLUSIONS: The incidence of AEs, preventable AEs and potentially preventable deaths in the Netherlands is substantial and needs to be reduced. Patient safety efforts should focus on surgical procedures and older patients.

Benefits and pitfalls of pooling datasets from comparable observational studies: combining US and Dutch nursing home studies.

Different research groups sometimes carry out comparable studies. Combining the data can make it possible to address additional research questions, particularly for small observational studies such as those frequently seen in palliative care research. We present a systematic approach to pool individual subject data from observational studies that addresses differences in research design, illustrating the approach with two prospective observational studies on treatment and outcomes of lower respiratory tract infection in US and Dutch nursing home residents. Benefits of pooling individual subject data include enhanced statistical power, the ability to compare outcomes and validate models across sites or settings, and opportunities to develop new measures. In our pooled dataset, we were able to evaluate treatments and end-of-life decisions for comparable patients across settings, which suggested opportunities to improve care. In addition, greater variation in participants and treatments in the combined dataset allowed for subgroup analyses and interaction hypotheses, but required more complex analytic methods. Pitfalls included the large amount of time required for equating study procedures and variables and the need for additional funding.

[The usefulness of the hospital standardized mortality ratio as an indicator of hospital mortality]. / Het gestandaardiseerde ziekenhuissterftecijfer (HSMR) bruikbaar voor het volgen van ziekenhuissterfte.

In 2007, a patient safety programme was started to reduce hospital mortality in the Netherlands. The hospital standardized mortality ratio (HSMR) seems to be a promising indicator for monitoring the reduction of hospital mortality within hospitals. It is questionable, however, whether the HSMR can be used to compare the performance of hospitals. It has been shown that certain specialized procedures such as percutaneous transluminal coronary angioplasty (PTCA) and open heart surgery have an impact on the HSMR. Although this hampers a fair comparison between cardiac centres and general hospitals, the HSMR may still indicate whether a cardiac centre could improve its performance. Moreover, the impact of cardiac procedures on the HSMR is relatively modest, which shows that it is a robust indicator to monitor the intended decrease of hospital mortality on a national scale.

[Increase in preventive screening: need for revision of the Dutch 'Wet op het Bevolkingsonderzoek' (Population Screening Act)]. / Toename van het preventiefonderzoek: noodzaak tot revisie van de Wet op het Bevolkingsonderzoek.

A growing number of institutions offer health checks to the public. These preventive checks have to comply with the Dutch 'Wet op het Bevolkingsonderzoek' (Population Screening Act), in order to protect citizens from harmful investigations and the detection of diseases for which there is no cure. However, for some of the investigations it is not clear whether a license is needed or what diseases may be detected. In addition, institutions are allowed to sell self-tests of prohibited investigations. The Act therefore needs revision. Moreover the 'Kwaliteitswet Zorginstellingen' (Care Institutions Quality Act) should also apply to institutions that offer preventive investigations so as to ensure that unwarranted screening is no longer possible.

Dealing with requests for euthanasia: a qualitative study investigating the experience of general practitioners.

BACKGROUND: Caring for terminally ill patients is a meaningful task, however the patient's suffering can be a considerable burden and cause of frustration. OBJECTIVES: The aim of this study is to describe the experiences of general practitioners (GPs) in The Netherlands in dealing with a request for euthanasia from a terminally ill patient. METHODS: The data, collected through in-depth interviews, were analysed according to the constant comparative method. RESULTS: Having to face a request for euthanasia when attempting to relieve a patient's suffering was described as a very demanding experience that GPs generally would like to avoid. Nearly half of the GPs (14/30) strive to avoid euthanasia or physician assisted suicide because it was against their own personal values or because it was emotional burdening to be confronted with this issue. They explained that by being directed on promoting a peaceful dying process, or the quality of end-of-life of a patient by caring and supporting the patient and the relatives it was mainly possible to shorten patient's suffering without "intentionally hastening a patient's death on his request". The other GPs (16/30) explained that as sometimes the suffering of a patient could not be lessened they were open to consider a patient's request for euthanasia or physician assisted suicide. They underlined the importance of a careful decision-making process, based on finding a balance between the necessity to shorten the patient's suffering through euthanasia and their personal values. CONCLUSION: Dealing with requests for euthanasia is very challenging for GPs, although they feel committed to alleviate a patient's suffering and to promote a peaceful death.

Dementia severity, decline and improvement after a lower respiratory tract infection.

OBJECTIVE: To assess decline and improvement in functional characteristics, cognition and restraint use after a lower respiratory tract infection (LRI) and describe variation by dementia severity. DESIGN: Two prospective cohort studies. SETTING: Nursing homes in the Netherlands and in Missouri, USA. PARTICIPANTS: 227 Dutch and 396 Missouri nursing home residents with dementia and LRI who were treated with antibiotics. MEASUREMENTS: We compared functional characteristics (Activities of Daily Living [ADL], bedfast status, pressure ulcers, incontinence), cognition and restraint use 3 months after an LRI with status 1 to 2 weeks before diagnosis. RESULTS: Residents with LRI frequently declined on all measures, but many also improved, including those with severe dementia. On the measures where residents could still decline further, residents with severe dementia showed higher variability than residents with less severe dementia. This was most obvious for bedfast status and restraint use. CONCLUSIONS: Compared with less severely demented residents, residents with severe dementia showed more decline on measures where they still had room for change. However, on these measures, residents with severe dementia also improved more often. LRI does not necessarily lead to deterioration even in individuals with severe dementia.

[Career goals and choice of profession among recently graduated physicians]. / Carrièrewensen en beroepskeuze van recent afgestudeerde artsen.

OBJECTIVE: To obtain insight into the career choice of recently graduated physicians and the factors that influence this choice. DESIGN: Descriptive. METHOD: Questionnaires were sent to 1091 physicians who graduated from the VU University in Amsterdam or the University Utrecht between 1 July 1999 and 30 June 2002. Graduates were asked to provide the following information: current occupation, number of days that they have worked in current occupation, 5-year career goals, prerequisites for obtaining a residency, time spent on patient care and research, and the extent to which certain factors have influenced their career choice. Respondents were subdivided into three groups: clinical specialists, general practitioners, and public or occupational health professionals. RESULTS: The response was 70%, and approximately half of the respondents were engaged in additional resident training: 68% in a clinical specialty, 23% in general practice, 9% in public or occupational health, and 2% in another occupation. Most of the respondents worked full-time but would prefer to work less in the future. Full-time availability was the most important prerequisite for a clinical residency. Work experience after graduation was also considered important to obtain a residency in general practice or public or occupational health. Among clinical and general practitioner residents, the most important factor influencing career choice was interest in the specific field. For public and occupational health residents, the most important factor was working within office hours, particularly for female respondents. CONCLUSION: Various factors influence career choice in recently graduated physicians, and these factors are specialty-dependent. Graduates are interested in the possibility of working part-time in their present occupation and in the near future.

Waiting for elective general surgery: impact on health related quality of life and psychosocial consequences.

BACKGROUND: Long waiting times for elective surgical treatment threaten timely care provision in several countries. The purpose of this study was to assess the impact of waiting for elective general surgery on the quality of life and psychosocial health of patients. METHODS: A cross-sectional questionnaire study with postoperative follow-up was performed among patients on waiting lists for surgical treatment of varicose veins (n = 176), inguinal hernia (n = 201), and gallstones (n = 128) in 27 hospitals. RESULTS: In each group the waiting period involved worse general health perceptions (GHPQ), more problems in quality of life (EuroQoL), and raised levels of anxiety (STAI) as compared to after surgery (all differences: p < 0.05). Quality of life was not affected in 19-36% of patients. Emotional reactions to waiting were most negative among patients with gallstones. Prior information about the duration of the wait reduced the negativity of these reactions (p < 0.05). Social activities were affected in 39% to 48% of the patients and 18%-23% of employed patients reported problems with work during the wait. Having waited a longer time was associated with worse quality of life among patients with inguinal hernia. Longer waited times also engendered more negative reactions to waiting among patients with inguinal hernia and gallstones (multilevel regression analysis, p < 0.01). CONCLUSION: Waiting for general surgery mainly involves a prolonged period of decreased health and an affected psychological and social life of the patient in waiting. Variation in the severity of these consequences across patients indicates that the prioritisation of patients could reduce the overall burden of waiting. Early information about the duration of the delay could further promote a patient's acceptance of waiting.

Practice of the statutory disciplinary system for health care psychologists in the Netherlands.

A statutory disciplinary system for health care psychologists in the Netherlands was introduced in 1998. To provide an indication of the contribution of this system to monitoring the quality of health care psychology all complaints dealt with in the period 1999-2002 were studied. Questionnaires were sent to all 388 members of the disciplinary boards (response 89%) and 43 practicing lawyers (response 65%). The regional disciplinary boards dealt with 68 complaints about health care psychologists. A sanction was imposed 16 times (25%), mainly for sexual intimacies or a sexual relationship, violation of professional secrecy or incorrect statement or reporting. The statutory disciplinary system appears to be an important corrective instrument for serious forms of professional misconduct for health care psychologists.

[Treatment of pneumonia in nursing home residents with severe dementia: for residents with poor prognosis, a more reserved approach in The Netherlands and more active treatment in the United States]. / Behandeling van pneumonie bij verpleeghuispatiënten met ernstige dementie: terughoudender beleid in Nederland en actiever beleid in de verenigde Staten naarmate de prognose ongunstiger is.

OBJECTIVE: To describe differences in the treatment of pneumonia and in the association of treatment with prognosis in Dutch and American nursing home patients with late-stage dementia. Design. Prospective studies in The Netherlands and the American state of Missouri. METHOD: In 61 Dutch nursing homes and 36 in Missouri, severely demented patients with pneumonia were included in the periods October 1996-July 1998 and August 1995-September 1998 respectively. Data was collected on their state of health, comorbidity, symptoms of pneumonia and treatment aspects such as antibiotic use, hospital admission and relief of symptoms. Comparisons were made between treatments in both countries and between groups of patients with a similar probability of mortality within 2 weeks. RESULTS: A total of 328 Dutch and 280 American patients were selected. Antibiotics were more frequently withheld in The Netherlands (in 33% of patients) than in Missouri (24%). Differences in antibiotic use were more pronounced in patients with a poor prognosis (56% versus 15%). Dutch patients were more frequently dehydrated but were less likely to receive rehydration therapy than American patients, with a larger difference in patients with a poor prognosis (2% versus 63%). Treatments to relieve symptoms that were provided more often in patients with a poor prognosis (in 20-26%) were: oxygen (both countries), and in The Netherlands also opiates, and hypnotics, sedatives or anxiolytics. CONCLUSION: In The Netherlands, curative treatment was frequently withheld in patients with severe dementia and pneumonia, and even more frequently when the prognosis was poorer. Conversely, treatment in Missouri was more active in patients with a poor prognosis. Despite more frequent palliative treatment goals in The Netherlands, treatments to relieve symptoms were provided infrequently and inconsistent with this approach. These insights may be helpful for decision-making in the treatment of pneumonia in patients with severe dementia.

[Disciplinary measures for healthcare practitioners in the Netherlands 1983-2002]. / Tuchtrechtspraak voor de gezondheidszorg in Nederland; 1983-2002.

OBJECTIVE: To gain insight into disciplinary proceedings for healthcare practitioners in the Netherlands. DESIGN: Descriptive, retrospective study. METHOD: We examined all first verdicts pronounced by disciplinary boards during the period 1983-2002 involving physicians, dentists, pharmacists and midwifes. The following information was studied: year of the verdict, number and nature of complaints, plaintiff characteristics, types ofpractitioners accused, verdicts and number ofcases appealed and their outcomes. RESULTS: Disciplinary boards addressed 13,228 complaints during the study period (average 661 per year). The number of complaints increased more rapidly than the number of practitioners. Most complaints concerned physicians (92%). The complaint density was highest for physicians; it was higher for general practitioners than specialists and generally higher for surgical specialists than non-surgical specialists. Half of the complaints concerned 'lack of care or inadequate care' or 'incorrect treatment'. The number of complaints that resulted in sanctions decreased during the study period (average 18%). The sanction density remained constant throughout the study period (0.25 sanctions per 100 practitioners). The sanction density was highest for physicians and higher for general practitioners than for specialists. Overall, 45 practitioners were permanently struck from the register or had their licence to practice revoked. CONCLUSION: There was a slight increase in the number ofcomplaints over the past 20 years. The corrective effects of the disciplinary code are obvious from the number of individuals who were permanently struck from the register or had their license to practice revoked. An increased impact on the quality of care should be sought through prevention and education. Disciplinary jurisprudence warrants more attention in training and continuing educational courses. Publishing verdicts may also increase attention.

Prioritising patients on surgical waiting lists: a conjoint analysis study on the priority judgements of patients, surgeons, occupational physicians, and general practitioners.

The prioritisation of patients on waiting lists is ascribed high potential for diminishing the consequences of waiting times for elective surgery. However, consistent evidence is lacking about which factors determine patient priority and it is unclear whether different stakeholders have different opinions on this issue. This study, conducted in the Netherlands, investigates the judgements of patients, laypersons (i.e. patients on other waiting lists), and physicians on the priority of patients on waiting lists. Participants were former patients with varicose veins (N=82), inguinal hernia (N=86), and gallstones (N=89), 101 surgeons, 95 occupational physicians, and 65 general practitioners. Each participant judged the priority of paper vignettes of patients with varicose veins, inguinal hernia, and gallstones. The vignettes were designed according to conjoint analysis methodology and described the physical symptoms, the psychological distress, the social limitations, and impairments in work of patients. Multilevel regression analysis of the responses showed that all groups made significant distinctions in patient priority depending on the severity of each characteristic in the vignettes. The physical symptoms and impairments in work had on average the highest impact on priority, but the summed impact of non-physical factors exceeded that of the physical symptoms. The different groups of participants appraised only the importance of the physical symptoms differently, but opinions on priority varied widely within each group. Whereas the high level of agreement between the different groups would facilitate the acceptance and the implementation of explicit prioritisation of patients on the waiting list, the high inter-individual variation signifies that consensus criteria for prioritisation are needed to warrant equity and transparency in care provision.

[Experience of family members with the decision concerning artificial nutrition and hydration in people with dementia in nursing homes]. / Ervaringen van familie met de besluitvorming rond kunstmatige toediening van vocht en voedsel (ktvv) bij mensen met dementie in het verpleeghuis.

The purpose of this study is to investigate how relatives of nursing home patients with dementia, for whom the decision whether to start or forgo artificial nutrition and hydration (ANH) was made, assess the decision-making process. Furthermore we evaluated the information given by the nursing home staff to the relatives and the care provided by them to the patient. The study was an observational study based on written questionnaires. Relatives of 99 nursing home patients with dementia filled in a questionnaire at the time of the decision-making and 6 weeks after the decision was made or 6 weeks after the patient had died. Almost all relatives assessed the 4 aspects of the decision-making process (number of consults, content of the consults, carefulness of the decision-making and there own part in the decision-making process) at both times as 'good' or 'satisfactory'. Furthermore it appeared that they judged the carefulness of the decision-making process significantly more often as 'good' when they also assessed the other three aspects as 'good'. Especially their own influence on the decision-making process appeared to play a part in this matter. Information about the possible consequences of starting ANH as well as about the condition of the patient were experienced sufficient by almost all relatives. This was also the case for the care offered to the patient. In general almost all relatives reported satisfaction with the decision and with the carefulness of the decision-making process. This satisfaction did not differ between the moment of the decision and afterwards. For this it did not make any difference whether the patient had or had not died.