Johannes J. M. van Delden

Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey

BACKGROUND In 2002, the euthanasia act came into effect in the Netherlands, which was followed by a slight decrease in the euthanasia frequency. We assessed frequency and characteristics of euthanasia, physician-assisted suicide, and other end-of-life practices in 2010, and assessed trends since 1990. METHODS In 1990, 1995, 2001, 2005, and 2010 we did nationwide studies of a stratified sample from the death registry of Statistics Netherlands, to which all deaths and causes were reported. We mailed questionnaires to physicians attending these deaths (2010: n=8496 deaths). All cases were weighted to adjust for the stratification procedure and for differences in response rates in relation to the age, sex, marital status, region of residence, and cause and place of death. FINDINGS In 2010, of all deaths in the Netherlands, 2·8% (95% CI 2·5-3·2; 475 of 6861) were the result of euthanasia. This rate is higher than the 1·7% (1·5-1·8; 294 of 9965) in 2005, but comparable with those in 2001 and 1995. Distribution of sex, age, and diagnosis was stable between 1990 and 2010. In 2010, 77% (3136 of 4050) of all cases of euthanasia or physician-assisted suicide were reported to a review committee (80% [1933 of 2425] in 2005). Ending of life without an explicit patient request in 2010 occurred less often (0·2%; 95% CI 0·1-0·3; 13 of 6861) than in 2005, 2001, 1995, and 1990 (0·8%; 0·6-1·1; 45 of 5197). Continuous deep sedation until death occurred more frequently in 2010 (12·3% [11·6-13·1; 789 of 6861]) than in 2005 (8·2% [7·8-8·6; 521 of 9965]). Of all deaths in 2010, 0·4% (0·3-0·6; 18 of 6861) were the result of the patients decision to stop eating and drinking to end life; in half of these cases the patient had made a euthanasia request that was not granted. INTERPRETATION Our study provides insight in consequences of regulating euthanasia and physician-assisted suicide within the broader context of end-of-life practices. In the Netherlands the euthanasia law resulted in a relatively transparent practice. Although translating these results to other countries is not straightforward, they can inform the debate on legalisation of assisted dying in other countries. FUNDING The Netherlands Organization for Research and Development (ZonMw).

Diagnostic accuracy of conventional or age adjusted D-dimer cut-off values in older patients with suspected venous thromboembolism: systematic review and meta-analysis

Objective To review the diagnostic accuracy of D-dimer testing in older patients (>50 years) with suspected venous thromboembolism, using conventional or age adjusted D-dimer cut-off values. Design Systematic review and bivariate random effects meta-analysis. Data sources We searched Medline and Embase for studies published before 21 June 2012 and we contacted the authors of primary studies. Study selection Primary studies that enrolled older patients with suspected venous thromboembolism in whom D-dimer testing, using both conventional (500 µg/L) and age adjusted (age×10 µg/L) cut-off values, and reference testing were performed. For patients with a non-high clinical probability, 2×2 tables were reconstructed and stratified by age category and applied D-dimer cut-off level. Results 13 cohorts including 12 497 patients with a non-high clinical probability were included in the meta-analysis. The specificity of the conventional cut-off value decreased with increasing age, from 57.6% (95% confidence interval 51.4% to 63.6%) in patients aged 51-60 years to 39.4% (33.5% to 45.6%) in those aged 61-70, 24.5% (20.0% to 29.7% in those aged 71-80, and 14.7% (11.3% to 18.6%) in those aged >80. Age adjusted cut-off values revealed higher specificities over all age categories: 62.3% (56.2% to 68.0%), 49.5% (43.2% to 55.8%), 44.2% (38.0% to 50.5%), and 35.2% (29.4% to 41.5%), respectively. Sensitivities of the age adjusted cut-off remained above 97% in all age categories. Conclusions The application of age adjusted cut-off values for D-dimer tests substantially increases specificity without modifying sensitivity, thereby improving the clinical utility of D-dimer testing in patients aged 50 or more with a non-high clinical probability.

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

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

Feedback of individual genetic results to research participants: in favor of a qualified disclosure policy.

This article discusses whether and when researchers have a moral obligation to feedback individual genetic research results. This unsettled debate has rapidly gained in urgency in view of the emergence of biobanks and the advances in next‐generation sequencing technology, which has the potential to generate unequalled amounts of genetic data. This implies that the generation of many known and unknown genetic variants in individual participants of genetics/genomics research as intentionally or collaterally obtained byproducts is unavoidable. As we conclude that valid reasons exist to adopt a duty to return genetic research results, a qualified disclosure policy is proposed. This policy contains a standard default package, possibly supplemented with (one or more of) three additional packages. Whereas the default package, containing life‐saving information of immediate clinical utility, should be offered routinely and mandatory to all research participants, offering (one of) the three additional packages is context‐specific. Such a qualified disclosure policy in our opinion best balances the potential benefits of disclosure with the potential risks for research participants and the harms of unduly hindering biomedical research. We appeal to the genetics community to make a joint effort to further refine the packages and set thresholds for result selection. Hum Mutat 32:1–7, 2011.

Two decades of research on euthanasia from the netherlands. What have we learnt and what questions remain

Two decades of research on euthanasia in the Netherlands have resulted into clear insights in the frequency and characteristics of euthanasia and other medical end-of-life decisions in the Netherlands. These empirical studies have contributed to the quality of the public debate, and to the regulating and public control of euthanasia and physician-assisted suicide. No slippery slope seems to have occurred. Physicians seem to adhere to the criteria for due care in the large majority of cases. Further, it has been shown that the majority of physicians think that the euthanasia Act has improved their legal certainty and contributes to the carefulness of life-terminating acts. In 2005, eighty percent of the euthanasia cases were reported to the review committees. Thus, the transparency envisaged by the Act still does not extend to all cases. Unreported cases almost all involve the use of opioids, and are not considered to be euthanasia by physicians. More education and debate is needed to disentangle in these situations which acts should be regarded as euthanasia and which should not. Medical end-of-life decision-making is a crucial part of end-of-life care. It should therefore be given continuous attention in health care policy and medical training. Systematic periodic research is crucial for enhancing our understanding of end-of-life care in modern medicine, in which the pursuit of a good quality of dying is nowadays widely recognized as an important goal, in addition to the traditional goals such as curing diseases and prolonging life.

The implications of today’s family structures for support giving to older parents

ABSTRACT There is considerable debate about the effects of todays family structures on support arrangements for older people. Using representative data from The Netherlands, the study reported in this paper investigates which socio-demographic characteristics of adult children and their elderly parents, and which motivations of the adult children, correlate with children giving practical and social support to their parents. The findings indicate that the strongest socio-demographic correlates of a higher likelihood of giving support were: having few siblings, having a widowed parent without a new partner and, for practical support, a short geographical distance between the parents and childs homes. Single mothers were more likely to receive support than mothers with partners, irrespective of whether their situation followed divorce or widowhood. Widowed fathers also received more support, but only with housework. A good parent-child relationship was the most important motivator for giving support, whereas subscribing to filial obligation norms was a much weaker motivator, especially for social support. Insofar as demographic and cultural changes in family structures predict a lower likelihood of support from children to elderly parents, this applies to practical support, and derives mainly from increased geographical separation distances and from the growing trend for parents to take new partners. Social support is unlikely to be affected by these changes if parents and children maintain good relationships.

Comparative Survival among Older Adults with Advanced Kidney Disease Managed Conservatively Versus with Dialysis.

BACKGROUND AND OBJECTIVES Outcomes of older patients with ESRD undergoing RRT or conservative management (CM) are uncertain. Adequate survival data, specifically of older patients, are needed for proper counseling. We compared survival of older renal patients choosing either CM or RRT. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS A retrospective survival analysis was performed of a single-center cohort in a nonacademic teaching hospital in The Netherlands from 2004 to 2014. Patients with ESRD ages ≥70 years old at the time that they opted for CM or RRT were included. Patients with acute on chronic renal failure needing immediate start of dialysis were excluded. RESULTS In total, 107 patients chose CM, and 204 chose RRT. Patients choosing CM were older (mean±SD: 83±4.5 versus 76±4.4 years; P<0.001). The Davies comorbidity scores did not differ significantly between both groups. Median survival of those choosing RRT was higher than those choosing CM from time of modality choice (median; 75th to 25th percentiles: 3.1, 1.5-6.9 versus 1.5, 0.7-3.0 years; log-rank test: P<0.001) and all other starting points (P<0.001 in all patients). However, the survival advantage of patients choosing RRT was no longer observed in patients ages ≥80 years old (median; 75th to 25th percentiles: 2.1, 1.5-3.4 versus 1.4, 0.7-3.0 years; log-rank test: P=0.08). The survival advantage was also substantially reduced in patients ages ≥70 years old with Davies comorbidity scores of ≥3, particularly with cardiovascular comorbidity, although the RRT group maintained its survival advantage at the 5% significance level (median; 75th to 25th percentiles: 1.8, 0.7-4.1 versus 1.0, 0.6-1.4 years; log-rank test: P=0.02). CONCLUSIONS In this single-center observational study, there was no statistically significant survival advantage among patients ages ≥80 years old choosing RRT over CM. Comorbidity was associated with a lower survival advantage. This provides important information for decision making in older patients with ESRD. CM could be a reasonable alternative to RRT in selected patients.

Do-not-resuscitate decisions in six European countries

Objective:To study and compare the incidence and main background characteristics of do-not-resuscitate (DNR) decision making in six European countries. Design:Retrospective. Setting:We studied DNR decisions simultaneously in Belgium (Flanders), Denmark, Italy (four regions), the Netherlands, Sweden, and Switzerland (German-speaking part). In each country, random samples of death certificates were drawn from death registries to which all deaths are reported. The deaths occurred between June 2001 and February 2002. Participants:Reporting physicians received a mailed questionnaire about the medical decision making that had preceded death. The response percentage was 75% for the Netherlands, 67% for Switzerland, 62% for Denmark, 61% for Sweden, 59% for Belgium, and 44% for Italy. The total number of deaths studied was 20,480. Interventions:None. Measurements and Main Results:Measurements were fre-quency of DNR decisions, both individual and institutional, and patient involvement. Before death, an individual DNR decision was made in about 50–60% of all nonsudden deaths (Switzerland 73%, Italy 16%). The frequency of institutional decisions was highest in Sweden (22%) and Italy (17%) and lowest in Belgium (5%). DNR decisions are discussed with competent patients in 10–84% of cases. In the Netherlands patient involvement rose from 53% in 1990 to 84% in 2001. In case of incompetent patients, physicians bypassed relatives in 5–37% of cases. Conclusions:Except in Italy, DNR decisions are a common phenomenon in these six countries. Most of these decisions are individual, but institutional decisions occur frequently as well. In most countries, the involvement of patients in DNR decision making can be improved.

Validation of two age dependent D-dimer cut-off values for exclusion of deep vein thrombosis in suspected elderly patients in primary care: retrospective, cross sectional, diagnostic analysis

Objective To determine whether the use of age adapted D-dimer cut-off values can be translated to primary care patients who are suspected of deep vein thrombosis. Design Retrospective, cross sectional diagnostic study. Setting 110 primary care doctors affiliated with three hospitals in the Netherlands. Participants 1374 consecutive patients (936 (68.1%) aged >50 years) with clinically suspected deep vein thrombosis. Main outcome measures Proportion of patients with D-dimer values below two proposed age adapted cut-off levels (age in years×10 μg/L in patients aged >50 years, or 750 μg/L in patients aged ≥60 years), in whom deep vein thrombosis could be excluded; and the number of false negative results. Results Using the Wells score, 647 patients had an unlikely clinical probability of deep vein thrombosis. In these patients (at all ages), deep vein thrombosis could be excluded in 309 (47.8%) using the age dependent cut-off value compared with 272 (42.0%) using the conventional cut-off value of 500 μg/L (increase 5.7%, 95% confidence interval 4.1% to 7.8%). This exclusion rate resulted in 0.5% and 0.3% false negative cases, respectively (increase 0.2%, 0.004% to 8.6%).The increase in exclusion rate by using the age dependent cut-off value was highest in the oldest patients. In patients older than 80 years, deep vein thrombosis could be safely excluded in 22 (35.5%) patients using the age dependent cut-off value compared with 13 (21.0%) using the conventional cut-off value (increase 14.5%, 6.8% to 25.8%). Compared with the age dependent cut-off value, the cut-off value of 750 μg/L had a similar exclusion rate (307 (47.4%) patients) and false negative rate (0.3%). Conclusions Combined with a low clinical probability of deep vein thrombosis, use of the age dependent D-dimer cut-off value for patients older than 50 years or the cut-off value of 750 μg/L for patients aged 60 years and older resulted in a considerable increase in the proportion of patients in primary care in whom deep vein thrombosis could be safely excluded, compared with the conventional cut-off value of 500 μg/L.

Pre-arrest predictors of survival after resuscitation from out-of-hospital cardiac arrest in the elderly a systematic review

BackgroundTo enable older people to make decisions about the appropriateness of cardiopulmonary resuscitation (CPR), information is needed about the predictive value of pre-arrest factors such as comorbidity, functional and cognitive status on survival and quality of life of survivors. We systematically reviewed the literature to identify pre-arrest predictors for survival, quality of life and functional outcomes after out-of-hospital (OHC) CPR in the elderly.MethodsWe searched MEDLINE (through May 2011) and included studies that described adults aged 70 years and over needing CPR after OHC cardiac arrest. Prognostic factors associated with survival to discharge and quality of life of survivors were extracted. Two authors independently appraised the quality of each of the included studies. When possible a meta-analysis of odd’s ratios was performed.ResultsTwenty-three studies were included (n = 44,582). There was substantial clinical and statistical heterogeneity and reporting was often inadequate. The pooled survival to discharge in patients >70 years was 4.1% (95% CI 3.0-5.6%). Several studies showed that increasing age was significantly associated with worse survival, but the predictive value of comorbidity was investigated in only one study. In another study, nursing home residency was independently associated with decreased chances of survival. Only a few small studies showed that age is negatively associated with a good quality of life of survivors. We were unable to perform a meta-analysis of possible predictors due to a wide variety in reporting and statistical methods.ConclusionsAlthough older patients have a lower chance of survival after CPR in univariate analysis (i.e. 4.1%), older age alone does not seem to be a good criterion for denying patients CPR. Evidence for the predictive value of comorbidities and for the predictive value of age on quality of life of survivors is scarce. Future studies should use uniform methods for reporting data and pre-arrest factors to increase the available evidence about pre arrest factors on the chance of survival. Furthermore, patient-specific outcomes such as quality of life and post-arrest cognitive function should be investigated too.