Paul J. van der Maas

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.

Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995.

BACKGROUND In 1991 a new procedure for reporting physician-assisted deaths was introduced in the Netherlands that led to a tripling in the number of reported cases. In 1995, as part of an evaluation of this procedure, a nationwide study of euthanasia and other medical practices concerning the end of life was begun that was identical to a study conducted in 1990. METHODS We conducted two studies, the first involving interviews with 405 physicians (general practitioners, nursing home physicians, and clinical specialists) and the second involving questionnaires mailed to the physicians attending 6060 deaths that were identified from death certificates. The response rates were 89 percent and 77 percent, respectively. RESULTS Among the deaths studied, 2.3 percent of those in the interview study and 2.4 percent of those in the death-certificate study were estimated to have resulted from euthanasia, and 0.4 percent and 0.2 percent, respectively, resulted from physician-assisted suicide. In 0.7 percent of cases, life was ended without the explicit, concurrent request of the patient. Pain and symptoms were alleviated with doses of opioids that may have shortened life in 14.7 to 19.1 percent of cases, and decisions to withhold or withdraw life-prolonging treatment were made in 20.2 percent. Euthanasia seems to have increased in incidence since 1990, and ending of life without the patients explicit request to have decreased slightly. For each type of medical decision except those in which life-prolonging treatment was withheld or withdrawn, cancer was the most frequently reported diagnosis. CONCLUSIONS Since the notification procedure was introduced, end-of-life decision making in the Netherlands has changed only slightly, in an anticipated direction. Close monitoring of such decisions is possible, and we found no signs of an unacceptable increase in the number of decisions or of less careful decision making.

The health care costs of smoking

BACKGROUND Although smoking cessation is desirable from a public health perspective, its consequences with respect to health care costs are still debated. Smokers have more disease than nonsmokers, but nonsmokers live longer and can incur more health costs at advanced ages. We analyzed health care costs for smokers and nonsmokers and estimated the economic consequences of smoking cessation. METHODS We used three life tables to examine the effect of smoking on health care costs - one for a mixed population of smokers and nonsmokers, one for a population of smokers, and one for a population of nonsmokers. We also used a dynamic method to estimate the effects of smoking cessation on health care costs over time. RESULTS Health care costs for smokers at a given age are as much as 40 percent higher than those for nonsmokers, but in a population in which no one smoked the costs would be 7 percent higher among men and 4 percent higher among women than the costs in the current mixed population of smokers and nonsmokers. If all smokers quit, health care costs would be lower at first, but after 15 years they would become higher than at present. In the long term, complete smoking cessation would produce a net increase in health care costs, but it could still be seen as economically favorable under reasonable assumptions of discount rate and evaluation period. CONCLUSIONS If people stopped smoking, there would be a savings in health care costs, but only in the short term. Eventually, smoking cessation would lead to increased health care costs.

Demographic and epidemiological determinants of healthcare costs in Netherlands: cost of illness study

abstract Objectives: To determine the demands on healthcare resources caused by different types of illnesses and variation with age and sex. Design: Information on healthcare use was obtained from all 22 healthcare sectors in the Netherlands. Most important sectors (hospitals, nursing homes, inpatient psychiatric care, institutions for mentally disabled people) have national registries. Total expenditures for each sector were subdivided into 21 age groups, sex, and 34 diagnostic groups. Setting: Netherlands, 1994. Main outcome measures: Proportion of healthcare budget spent on each category of disease and cost of health care per person at various ages. Results: After the first year of life, costs per person for children were lowest. Costs rose slowly throughout adult life and increased exponentially from age 50 onwards till the oldest age group (95). The top five areas of healthcare costs were mental retardation, musculoskeletal disease (predominantly joint disease and dorsopathy), dementia, a heterogeneous group of other mental disorders, and ill defined conditions. Stroke, all cancers combined, and coronary heart disease ranked 7, 8, and 10, respectively. Conclusions: The main determinants of healthcare use in the Netherlands are old age and disabling conditions, particularly mental disability. A large share of the healthcare budget is spent on long term nursing care, and this cost will inevitably increase further in an ageing population. Non-specific cost containment measures may endanger the quality of care for old and mentally disabled people. Key messages Little is known about demands for health care outside acute sectors In the Netherlands health costs are strongly age dependent, increasing exponentially after age 50 The five highest healthcare costs are for mental retardation, musculoskeletal disease, dementia, other mental disorders, and ill defined conditions Coronary heart disease, all cancers, and stroke accounted for only 9% of costs The main healthcare costs are for care not cure and costs are likely to increase rapidly in an ageing society

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.

Health-Related Quality-of-Life Effects of Radical Prostatectomy and Primary Radiotherapy for Screen-Detected or Clinically Diagnosed Localized Prostate Cancer

PURPOSE The current study was undertaken within the framework of a screening trial to compare the health-related quality-of-life (HRQOL) outcomes of two primary treatment modalities for localized prostate cancer: radical prostatectomy and external-beam radiotherapy. PATIENTS AND METHODS We conducted a prospective longitudinal cohort study among 278 patients with early screen-detected (59%) or clinically diagnosed (41%) prostate cancer using both generic and disease-specific HRQOL measures (SF-36, UCLA Prostate Cancer Index [urinary and bowel modules] and items relating to sexual functioning) at three points in time: t1 (baseline), t2 (6 months later), and t3 (12 months after t1). RESULTS Questionnaires were completed by 88% to 93% of all initially enrolled patients. Patients referred for primary radiotherapy were significantly older than prostatectomy patients (63 v 68 years, P <.01). Analyses (adjusted for age and pretreatment level of functioning) revealed poorer levels of generic HRQOL after radiotherapy. Prostatectomy patients reported significantly higher (P <.01) posttreatment incidences of urinary incontinence (39% to 49%) and erectile dysfunction (80% to 91%) than radiotherapy patients (respectively, 6% to 7% and 41% to 55%). Bowel problems (urgency) affected 30% to 35% of the radiotherapy group versus 6% to 7% of the prostatectomy group (P <.01). Patients with screen-detected and clinically diagnosed cancer reported similar posttreatment HRQOL. CONCLUSION Prostatectomy and radiotherapy differed in the type of HRQOL impairment. Because the HRQOL effects may be valued differently at the individual level, patients should be made fully aware of the potential benefits and adverse consequences of therapies for early prostate cancer. Differences in posttreatment HRQOL were not related to the method of cancer detection.

A model for breast cancer screening

A model for breast cancer screening has been developed. When the appropriate screening policy is specified, the model reproduces the detection rates and the incidence of interval cancers as observed in the recent screening projects in Utrecht and Nijmegen, the Netherlands. The model‐predicted mortality rate reduction is in accordance with the results of the Kopparberg/Ostergötland randomized trial in Sweden. Key parameters of the model are the duration of the preclinical stages and the sensitivity of mammography. The average duration is approximately 2 years at age 40 and increases to approximately 5 years at age 70. The sensitivity is high (approximately 95%) for tumors larger than 1 cm. The model is used in the prospective evaluation of effects and costs of various screening policies.

Nation wide breast cancer screening in the Netherlands: Results of initial and subsequent screening 1990-1995

Based on an extensive cost‐effectiveness analysis, the Dutch nation‐wide breast cancer screening programme started in 1990, providing a biennial screen examination to women aged 50 to 69 years. The programme is monitored by the National Evaluation Team, which annually collects tabulated regional evaluation data to determine performance indicators. This study presents (trends in) the outcomes of initial and subsequent screening rounds, 1990–1995, and compares them to the predictions of the cost‐effectiveness‐analysis. Up to 1996, 88% of the target population was covered by the programme and more than 2.4 × 106 women were invited. The overall attendance rate was 77.5% with little differences between screening rounds and age groups; the highest rate was found in non‐urbanised areas (82.4%). Of 1,000 initially (and 2 years thereafter) screened women, 13.4 (6.6) were referred for further investigation, 9.7 (4.4) were biopsied and 6.4 (3.4) had breast cancer. The positive predictive values of screen test and biopsy were 47% (51%) and 66% (78%), respectively. DCIS was diagnosed in 0.9 (0.5) and invasive cancers ≤10 mm in 1.5 (1.0) per 1,000 screens. Lymph node metastases were found in 28% (24%) of the invasive cancers. Except the increasing attendance, which was much higher than expected, the results were fairly constant over the years. Contrary to initial screens, the results of subsequent screens did not fulfil expectations with regard to breast cancer detection and tumour size distribution. We conclude that the nation‐wide screening programme is being implemented successfully. Given the results, the programme should contribute to a substantial breast cancer mortality reduction in the future. The discrepancy between observed and expected results in subsequent screens has to be watched carefully. Int. J. Cancer 75:694–698, 1998.© 1998 Wiley‐Liss, Inc.

The effect of the Liverpool Care Pathway for the dying: a multi-centre study:

We studied the effect of the Liverpool Care Pathway (LCP) on the documentation of care, symptom burden and communication in three health care settings. Between November 2003 and February 2005 (baseline period), the care was provided as usual. Between February 2005 and February 2006 (intervention period), the LCP was used for all patients for whom the dying phase had started. After death of the patient, a nurse and a relative filled in a questionnaire. In the baseline period, 219 nurses and 130 relatives filled in a questionnaire for 220 deceased patients. In the intervention period, 253 nurses and 139 relatives filled in a questionnaire for 255 deceased patients. The LCP was used for 197 of them. In the intervention period, the documentation of care was significantly more comprehensive compared with the baseline period, whereas the average total symptom burden was significantly lower in the intervention period. LCP use contributes to the quality of documentation and symptom control.

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.