Mette L. Rurup

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.

Concept of unbearable suffering in context of ungranted requests for euthanasia: qualitative interviews with patients and physicians

Objective To obtain in-depth information about the views of patients and physicians on suffering in patients who requested euthanasia in whom the request was not granted or granted but not performed. Design In-depth interviews with a topic list. Setting Patients’ homes and physicians’ offices. Participants 10 patients who explicitly requested euthanasia but whose request was not granted or performed and eight physicians of these patients; and eight physicians of patients who had requested euthanasia but had died before the request had been granted or performed or had died after the request was refused by the physician or after the patient had withdrawn his or her request. Results Not all patients who requested euthanasia thought their suffering was unbearable, although they had a lasting wish to die. Patients and physicians seemed to agree about this. In cases in which patients said they suffered unbearably there was less agreement about what constitutes unbearable suffering; patients put more emphasis on psychosocial suffering, such as dependence and deterioration, whereas physicians referred more often to physical suffering. In some cases the physician thought that the suffering was not unbearable because the patient’s behaviour seemed incompatible with unbearable suffering—for instance, because the patient was still reading books. Conclusions Patients do not always think that their suffering is unbearable, even if they have a lasting wish to die. Physicians seem to have a narrower perspective on unbearable suffering than patients and than case law suggests. In an attempt to solve the problem of different perspectives, physicians should take into account the different aspects of suffering as described in the literature and a framework for assessing the suffering of patients who ask for euthanasia.

Legal Euthanasia in Belgium Characteristics of All Reported Euthanasia Cases

Objectives:To study the reported medical practice of euthanasia in Belgium since implementation of the euthanasia law. Research Design:Analysis of the anonymous database of all euthanasia cases reported to the Federal Control and Evaluation Committee Euthanasia. Subjects:All euthanasia cases reported by physicians for review between implementation of the euthanasia law on September 22nd, 2002 and December 31, 2007 (n = 1917). Measures:Frequency of reported euthanasia cases, characteristics of patients and the decision for euthanasia, drugs used in euthanasia cases, and trends in reported cases over time. Results:The number of reported euthanasia cases increased every year from 0.23% of all deaths in 2002 to 0.49% in 2007. Compared with all deaths in the population, patients who died by euthanasia were more often younger (82.1% of patients who received euthanasia compared with 49.8% of all deaths were younger than 80, P < 0.001), men (52.7% vs. 49.5%, P = 0.005), cancer patients (82.5% vs. 23.5%, P < 0.001), and more often died at home (42.2% vs. 22.4%, P < 0.001). Euthanasia was most often performed with a barbiturate, sometimes in combination with neuromuscular relaxants (92.4%) and seldom with morphine (0.9%). In almost all patients, unbearable physical (95.6%) and/or psychological suffering (68%) were reported. A small minority of cases (6.6%) concerned nonterminal patients, mainly suffering from neuromuscular diseases. Conclusions:The frequency of reported euthanasia cases has increased every year since legalization. Euthanasia is most often chosen as a last resort at the end of life by younger patients, patients with cancer, and seldom by nonterminal patients.

Reporting of euthanasia in medical practice in Flanders, Belgium: cross sectional analysis of reported and unreported cases

Objectives To estimate the rate of reporting of euthanasia cases to the Federal Control and Evaluation Committee and to compare the characteristics of reported and unreported cases of euthanasia. Design Cross sectional analysis. Setting Flanders, Belgium. Participants A stratified at random sample was drawn of people who died between 1 June 2007 and 30 November 2007. The certifying physician of each death was sent a questionnaire on end of life decision making in the death concerned. Main outcome measures The rate of euthanasia cases reported to the Federal Control and Evaluation Committee; physicians’ reasons for not reporting cases of euthanasia; the relation between reporting and non-reporting and the characteristics of the physician and patient; the time by which life was shortened according to the physician; the labelling of the end of life decision by the physician involved; and differences in characteristics of due care between reported and unreported euthanasia cases. Results The survey response rate was 58.4% (3623/6202 eligible cases). The estimated total number of cases of euthanasia in Flanders in 2007 was 1040 (95% CI 970 to 1109), thus the incidence of euthanasia was estimated as 1.9% of all deaths (95% CI 1.6% to 2.3%). Approximately half (549/1040 (52.8%, 95% CI 43.9% to 60.5%)) of all estimated cases of euthanasia were reported to the Federal Control and Evaluation Committee. Physicians who perceived their case as euthanasia reported it in 93.1% (67/72) of cases. Cases of euthanasia were reported less often when the time by which life was shortened was less than one week compared with when the perceived life shortening was greater (37.3% v 74.1%; P<0.001). Unreported cases were generally dealt with less carefully than reported cases: a written request for euthanasia was more often absent (87.7% v 17.6% verbal request only; P<0.001), other physicians and caregivers specialised in palliative care were consulted less often (54.6% v 97.5%; 33.0% v 63.9%; P<0.001 for both), the life ending act was more often performed with opioids or sedatives (92.1% v 4.4%; P<0.001), and the drugs were more often administered by a nurse (41.3% v 0.0%; P<0.001). Conclusions One out of two euthanasia cases is reported to the Federal Control and Evaluation Committee. Most non-reporting physicians do not perceive their act as euthanasia. Countries debating legalisation of euthanasia should simultaneously consider developing a policy facilitating the due care and reporting obligations of physicians.

Wishes to die in older people: a quantitative study of prevalence and associated factors.

BACKGROUND Death thoughts and wishes occur frequently among older people. In different European countries estimates of 10%-20% have been found. AIMS To determine the prevalence and associated factors of death thoughts and wishes among older people in The Netherlands. METHODS In The Netherlands 1794 people (58-98 years) were interviewed in 2005/2006 (Longitudinal Aging Study Amsterdam). RESULTS 81.3% reported never having death thoughts/wishes; 15.3% reported having had such thoughts/wishes; 3.4% reported currently having a wish to die and/or a weakened wish to continue living. Of those with a current wish to die, 67% had depressive symptoms (vs. 32% of people with death thoughts/wishes ever and 9% of people who never had had death thoughts/wishes), and 20% suffered from a depressive disorder (vs. 5% if death thoughts/wishes ever; 0.3% if never death thoughts/wishes). In a multivariate analysis, a current wish to die was associated with having depressive symptoms, a depressive disorder, lower perceived mastery, financial problems, loneliness, small network, involuntary urine loss, being divorced, and having a speech impediment. CONCLUSIONS Practical implications for health-care professionals are that they should be aware that in certain situations older people are more likely to develop a wish to die, and that a wish to die does not necessarily mean that someone has a depressive disorder. Nevertheless, it should serve as a trigger to investigate and to treat depression if present.

Physicians' experiences with demented patients with advance euthanasia directives in the Netherlands.

Objectives: To estimate the incidence of (compliance with) advance euthanasia directives of patients suffering from dementia in the Netherlands and to gain knowledge about the experiences of physicians.

Interviews on end-of-life care with older people: reflections on six european studies

Qualitative research provides important insights into the experiences and perspectives of older people on end-of-life issues, but such research is methodologically and ethically complex. We offer a set of reflections from six end-of-life care studies conducted with older people in four European countries: Belgium, Germany, the Netherlands, and the United Kingdom. The reflection process was informed by four full-day meetings between the authors and referral to sources including the study interview guides, summary “pen portraits” about key issues encountered in the interviews, and key sections of the interview transcripts. We identified as major challenges accessing people, the introduction of end-of-life issues in an interview, managing emotions, the presence of companions, and reciprocity. Formal ethical review committees rarely take into account these complex issues. We concluded that is it necessary to maintain an ongoing reflexive stance to enhance qualitative research practice in the intersecting fields of aging and end-of-life studies.

The last phase of life: who requests and who receives euthanasia or physician-assisted suicide?

Background:When suffering becomes unbearable for patients they might request for euthanasia. Objective:To study which patients request for euthanasia and which requests actually resulted in euthanasia in relation with diagnosis, care setting at the end of life, and patient demographics. Design:A cross-sectional study covering all Dutch health care settings. Participants:In 2005, of death certificates of deceased persons, a stratified sample was derived from the Netherlands central death registry. The attending physician received a written questionnaire (n = 6860; response 78%). Measurements:If deaths were reported to have been nonsudden, the attending physician filled in a 4-page questionnaire on end-of-life decision-making. Data regarding the deceased persons age, sex, marital status, and cause of death were derived from the death certificate. Results:Of patients whose death was nonsudden, 7% explicitly requested for euthanasia. In about two thirds, the request did not lead to euthanasia or physician-assisted suicide being performed, in 39% because the patient died before the request could be granted and in 38% because the physician thought the criteria for due care were not met. Factors positively associated with a patient requesting for euthanasia are (young) age, diagnosis (cancer, nervous system), place of death (home), and involvement of palliative teams and psychiatrist in care. Diagnosis and place of death are also associated with requests resulting in euthanasia. Conclusions:Only a minority of patients request euthanasia at the end of life and of these requests a majority is not granted. Careful decision-making is necessary in all requests for euthanasia.

Physicians’ labelling of end-of-life practices: a hypothetical case study

Objectives: To investigate why physicians label end-of-life acts as either ‘euthanasia/ending of life’ or ‘alleviation of symptoms/palliative or terminal sedation’, and to study the association of such labelling with intended reporting of these acts. Methods: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians (response: 55%). They were asked to label six hypothetical end-of-life cases: three ‘standard’ cases and three cases randomly selected (out of 47), that varied according to (1) type of medication, (2) physician’s intention, (3) type of patient request, (4) patient’s life expectancy and (5) time until death. We identified the extent to which characteristics of cases are associated with physician’s labelling, with multilevel multivariable logistic regression. Results: The characteristics that contributed most to labelling cases as ‘euthanasia/ending of life’ were the administration of muscle relaxants (99% of these cases were labelled as ‘euthanasia/ending of life’) or disproportional morphine (63% of these cases were labelled accordingly). Other important factors were an intention to hasten death (54%) and a life expectancy of several months (46%). Physicians were much more willing to report cases labelled as ‘euthanasia’ (87%) or ‘ending of life’ (56%) than other cases. Conclusions: Similar cases are not uniformly labelled. However, a physicians’ label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not.

The use of opioids at the end of life: the knowledge level of Dutch physicians as a potential barrier to effective pain management

BackgroundPain is still one of the most frequently occurring symptoms at the end of life, although it can be treated satisfactorily in most cases if the physician has adequate knowledge. In the Netherlands, almost 60% of the patients with non-acute illnesses die at home where end of life care is coordinated by the general practitioner (GP); about 30% die in hospitals (cared for by clinical specialists), and about 10% in nursing homes (cared for by elderly care physicians).The research question of this study is: what is the level of knowledge of Dutch physicians concerning pain management and the use of opioids at the end of life?MethodsA written questionnaire was sent to a random sample of physicians of specialties most often involved in end of life care in the Netherlands. The questionnaire was completed by 406 physicians, response rate 41%.ResultsAlmost all physicians were aware of the most basal knowledge about opioids, e.g. that it is important for treatment purposes to distinguish nociceptive from neuropathic pain (97%). Approximately half of the physicians (46%) did not know that decreased renal function raises plasma concentration of morphine(-metabolites) and 34% of the clinical specialists erroneously thought opioids are the favoured drug for palliative sedation.Although 91% knew that opioids titrated against pain do not shorten life, 10% sometimes or often gave higher dosages than needed with the explicit aim to hasten death. About half felt sometimes or often pressured by relatives to hasten death by increasing opioiddosage.The large majority (83%) of physicians was interested in additional education about subjects related to the end of life, the most popular subject was opioid rotation (46%).ConclusionsAlthough the basic knowledge of physicians was adequate, there seemed to be a lack of knowledge in several areas, which can be a barrier for good pain management at the end of life. From this study four areas emerge, in which it seems likely that an improvement can improve the quality of pain management at the end of life for many patients in the Netherlands: 1)palliative sedation; 2)expected effect of opioids on survival; and 3) opioid rotation.