Bregje D Onwuteaka-Philipsen

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.

Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands.

Context Terminal sedation, the administration of sedating medications with cessation of nutrition and hydration, is an option for care of patients who are nearing death. However, little is known about physicians experience with terminal sedation. Contribution Of more than 400 physicians in the Netherlands who completed a survey about end-of-life care, just over half had ever used terminal sedation. Common reasons for using terminal sedation were relief of pain, agitation, or dyspnea. Hastening death was the primary intention in only 17% of reported cases. Caution Because attitudes and practices regarding terminal sedation vary geographically and culturally, it is unclear whether these results are generalizable outside of the Netherlands. The Editors Patients nearing death frequently have symptoms such as dyspnea, agitation, pain, and anxiety (1, 2). One of the most important goals of the medical care provided to these patients is the alleviation of these symptoms (3). If treatment with analgesic or anxiolytic agents is not effective, sedatives are sometimes used as an alternative to render patients unconscious and then oblivious to their symptoms (4, 5). Subsequently, if artificial nutrition and hydration are not given, death will follow soon. The ethical debate about this practice focuses on the extent to which it should be considered an end-of-life decision that possibly or certainly hastens death. Previous studies have explored the differences and similarities with other end-of-life decisions, such as euthanasia and physician-assisted suicide (6-19). However, little information exists on the medical practice of deep sedation with the forgoing of artificial nutrition or hydration in patients nearing death. Estimates about the frequency of deep sedation at the end of life vary from 15% to more than 60%, depending on the settings studied and the definitions used (4, 5, 20-26). The terminology used reflects these differences in definition of the practice of deep sedation at the end of life. Although terminal sedation is the most commonly used term, other frequently used terms, which demonstrate the different perspectives from which this practice is viewed, are sedation for intractable distress in the imminently dying, palliative sedation therapy, slow euthanasia, opioid coma, or anesthetic coma (6, 27-30). The present study describes the practice of terminal sedation in the Netherlands. This study was part of the evaluation of the notification procedure for physician-assisted death in the Netherlands, which was commissioned by the ministers of Health and Justice (31). Methods Respondent Characteristics We interviewed a nationwide sample of 410 physicians: 208 clinical specialists, 125 general practitioners, and 77 nursing home physicians. In the Netherlands, clinical specialists provide hospital care, general practitioners provide nonspecialized care outside the hospital, and nursing home physicians work in long-term care institutions mainly for elderly people. The proportions of deaths in these health care settings are approximately 35%, 42%, and 23%, respectively. The specialties involved in our study covered about 95% of all deaths in the Netherlands in 2001. The respondents were selected according to the following criteria: They were required to be in active practice at the time of the interview and to have actively practiced medicine within the registered specialty for the past 2 years in the same setting. All addresses were taken from the professional registries of the relevant specialties. To arrive at the desired number of 410 physicians, we sampled 482 physicians. Seventy-two physicians (15%) declined to take part in the study: 17% of clinical specialists, 18% of general practitioners, and 3% of nursing home physicians. Nonresponders did not differ in age from responders. Face-to-face interviews were conducted by experienced part-time working or recently retired physicians who were trained to administer the structured questionnaires. All interviews took place between March 2002 and October 2002. We applied strict rules to ensure the anonymity of all physicians and patients studied. Interview Process The interview schedule addressed experiences with end-of-life decision making (Appendix Figure [Questionnaire on Terminal Sedation]). Terminal sedation was defined as the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration. The respondents were first asked whether they had ever used terminal sedation and, subsequently, how often they had performed this practice in 2000 and 2001. Additional questions about the practice of terminal sedation concerned the physicians most recent patient to have received terminal sedation (n= 211). The physicians were asked about the patients characteristics; whether or not sedation or the forgoing of artificial nutrition or hydration had been discussed with the patient, family, or other health care professionals; the drugs used; the intention of the physician; the estimated life-shortening effect; and whether euthanasia was discussed during the decision process. Appendix Figure. Terminal sedation: frequencies and case characteristics. Statistical Analysis We calculated all estimates about the occurrence of terminal sedation in the Netherlands by weighting the estimates of individual physicians. Weighting factors were based on differences in sampling fractions and response rates for the different specialties. These sampling fractions were 125 of 7027 for general practitioners, 77 of 810 for nursing home physicians, 34 of 394 for cardiologists, 34 of 545 for neurologists, 69 of 1321 for specialists in internal medicine, 35 of 325 for pulmonologists, and 36 of 769 for surgeons. The probabilities used to determine sampling weights were 1 in 56 for general practitioners, 1 in 11 for nursing home physicians, 1 in 12 for cardiologists, 1 in 16 for neurologists, 1 in 19 for specialists in internal medicine, 1 in 9 for pulmonologists, and 1 in 21 for surgeons. Data on the 211 most recent patients seen by physicians were not weighted. All analyses were done by using SPSS software, version 10.0 (SPSS, Inc., Chicago, Illinois). Role of the Funding Sources The sponsors approved the study design but were not involved in the collection, analysis, or interpretation of the data or in the decision to submit the manuscript for publication. Results Most of the 410 physicians interviewed (76%) were men; 51% were clinical specialists, 30% were general practitioners, and 19% were nursing home physicians (Tables 1 and 2). Of all physicians, a weighted percentage of 52% (95% CI, 48% to 57%) had ever practiced terminal sedation. This percentage was 55% (CI, 49% to 62%) for clinical specialists, 48% (CI, 39% to 57%) for general practitioners, and 75% (CI, 64% to 83%) for nursing home physicians. We asked all interviewed physicians to estimate the total number of times they performed terminal sedation in 2000 and 2001. These numbers were extrapolated to the total number of 140377 deaths in 2001 by multiplying them with the weighting factor for each specialty and assuming that the numbers were similar for the 5% of deaths covered by hospital doctors from specialties other than the ones included in our study. This extrapolation suggests that physicians used terminal sedation in 10.0% (CI, 9.1% to 10.8%) of all deaths in that year. Of the 10.0% of deaths preceded by terminal sedation, 5.5% (CI, 5.0% to 6.1%) were attended by clinical specialists, 2.5% (CI, 1.9% to 3.2%) by general practitioners, and 2.0% (CI, 1.7% to 2.2%) by nursing home physicians. Table 1. Characteristics of Interviewed Physicians Table 2. Proportion of Deaths per Specialty Of all physicians who had ever used terminal sedation, 211 provided information about their most recent cases of terminal sedation (103 clinical specialists, 53 general practitioners, and 55 nursing home physicians). Of these most recent cases, 78% (CI, 72% to 83%) involved patients 65 years of age or older and 54% (CI, 47% to 60%) involved patients who had cancer (Table 3). Clinical specialists and nursing home physicians also frequently reported practicing terminal sedation in patients with cardiovascular diseases. The most frequently mentioned reasons for using terminal sedation were the alleviation of pain (51% [CI, 44% to 58%]), agitation (38% [CI, 32% to 45%]), dyspnea (38% [CI, 32% to 45%]), and anxiety (11% [CI, 8% to 16%]). Table 3. Characteristics of the Sample Consisting of Each Physicians Most Recent Case of Terminal Sedation In 59% (CI, 52% to 66%) of the most recent cases seen by physicians, the physician had discussed the sedation with the patient (Table 4); in 33% (CI, 27% to 39%) of the cases, the patient had requested deep sedation. The main reasons for not discussing deep sedation with the patient were the fact that the patient was incompetent or subcomatose (25% [CI, 20% to 31%]). The decision to forgo artificial nutrition or hydration was discussed less frequently with the patient; the respondents reported discussing this topic in 34% (CI, 28% to 41%) of their most recent cases and receiving a request from the patient to forgo artificial nutrition or hydration in 9% (CI, 6% to 13%). Next to patient incompetence (37% [CI, 31% to 44%]), another frequently mentioned reason for not discussing the decision to forgo artificial nutrition or hydration was that many physicians perceived this not as optional but rather as a given; they considered terminal sedation to preclude the concomitant use of artificial nutrition and hydration (23% [CI, 18% to 29%]) (data not shown). Table 4. Discussion about Deep Sedation and Forgoing Artificial Nutrition or Hydration in Each Physicians Most Recent Case of Terminal Sedation, by Physician Specialty The decision to use sedation was discussed with relatives of the patient in 93% (CI, 89% to 96%) of the most recent cases seen by physician

Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups

Background: Debates over legalisation of physician-assisted suicide (PAS) or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period. Methods: The data from Oregon (where PAS, now called death under the Oregon Death with Dignity Act, is legal) comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands (where both PAS and euthanasia are now legal) comprised all four government-commissioned nationwide studies of end-of-life decision making (1990, 1995, 2001 and 2005) and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought. Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured (inapplicable in the Netherlands, where all are insured), people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups. Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges.

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.

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.

Physicians' experiences with end-of-life decision-making: Survey in 6 European countries and Australia

BackgroundIn this study we investigated (a) to what extent physicians have experience with performing a range of end-of-life decisions (ELDs), (b) if they have no experience with performing an ELD, would they be willing to do so under certain conditions and (c) which background characteristics are associated with having experience with/or being willing to make such ELDs.MethodsAn anonymous questionnaire was sent to 16,486 physicians from specialities in which death is common: Australia, Belgium, Denmark, Italy, the Netherlands, Sweden and Switzerland.ResultsThe response rate differed between countries (39–68%). The experience of foregoing life-sustaining treatment ranged between 37% and 86%: intensifying the alleviation of pain or other symptoms while taking into account possible hastening of death between 57% and 95%, and experience with deep sedation until death between 12% and 46%. Receiving a request for hastening death differed between 34% and 71%, and intentionally hastening death on the explicit request of a patient between 1% and 56%.ConclusionThere are differences between countries in experiences with ELDs, in willingness to perform ELDs and in receiving requests for euthanasia or physician-assisted suicide. Foregoing treatment and intensifying alleviation of pain and symptoms are practiced and accepted by most physicians in all countries. Physicians with training in palliative care are more inclined to perform ELDs, as are those who attend to higher numbers of terminal patients. Thus, this seems not to be only a matter of opportunity, but also a matter of attitude.

Influence of physicians’ life stances on attitudes to end-of-life decisions and actual end-of-life decision-making in six countries

Aim: To examine how physicians’ life stances affect their attitudes to end-of-life decisions and their actual end-of-life decision-making. Methods: Practising physicians from various specialties involved in the care of dying patients in Belgium, Denmark, The Netherlands, Sweden, Switzerland and Australia received structured questionnaires on end-of-life care, which included questions about their life stance. Response rates ranged from 53% in Australia to 68% in Denmark. General attitudes, intended behaviour with respect to two hypothetical patients, and actual behaviour were compared between all large life-stance groups in each country. Results: Only small differences in life stance were found in all countries in general attitudes and intended and actual behaviour with regard to various end-of-life decisions. However, with regard to the administration of drugs explicitly intended to hasten the patient’s death (PAD), physicians with specific religious affiliations had significantly less accepting attitudes, and less willingness to perform it, than non-religious physicians. They had also actually performed PAD less often. However, in most countries, both Catholics (up to 15.7% in The Netherlands) and Protestants (up to 20.4% in The Netherlands) reported ever having made such a decision. Discussion: The results suggest that religious teachings influence to some extent end-of-life decision-making, but are certainly not blankly accepted by physicians, especially when dealing with real patients and circumstances. Physicians seem to embrace religious belief in a non-imperative way, allowing adaptation to particular situations.

Actual and preferred place of death of home-dwelling patients in four European countries: making sense of quality indicators.

Background Dying at home and dying at the preferred place of death are advocated to be desirable outcomes of palliative care. More insight is needed in their usefulness as quality indicators. Our objective is to describe whether “the percentage of patients dying at home” and “the percentage of patients who died in their place of preference” are feasible and informative quality indicators. Methods and Findings A mortality follow-back study was conducted, based on data recorded by representative GP networks regarding home-dwelling patients who died non-suddenly in Belgium (n = 1036), the Netherlands (n = 512), Italy (n = 1639) or Spain (n = 565). “The percentage of patients dying at home” ranged between 35.3% (Belgium) and 50.6% (the Netherlands) in the four countries, while “the percentage of patients dying at their preferred place of death” ranged between 67.8% (Italy) and 86.0% (Spain). Both indicators were strongly associated with palliative care provision by the GP (odds ratios of 1.55–13.23 and 2.30–6.63, respectively). The quality indicator concerning the preferred place of death offers a broader view than the indicator concerning home deaths, as it takes into account all preferences met in all locations. However, GPs did not know the preferences for place of death in 39.6% (the Netherlands) to 70.3% (Italy), whereas the actual place of death was known in almost all cases. Conclusion GPs know their patients’ actual place of death, making the percentage of home deaths a feasible indicator for collection by GPs. However, patients’ preferred place of death was often unknown to the GP. We therefore recommend using information from relatives as long as information from GPs on the preferred place of death is lacking. Timely communication about the place where patients want to be cared for at the end of life remains a challenge for GPs.

Decision-making capacity and communication about care of older people during their last three months of life

BackgroundLimited decision-making capacity (DMC) of older people affects their abilities to communicate about their preferences regarding end-of-life care. In an advance directive (AD) people can write down preferences for (non)treatment or appoint a proxy as a representative in (non)treatment choices in case of limited DMC.The aim is to study limited DMC during the end of life and compare the background, (satisfaction with) care and communication characteristics of people with and without limited DMC. Furthermore, the aim is to describe patient proxies’ opinions about experiences with the use of (appointed proxy) ADs.MethodsUsing a questionnaire, data were collected from proxies of participants of a representative sample of the Longitudinal Aging Study Amsterdam (n=168) and a purposive sample of the Advance Directive cohort study (n=184). Differences between groups (with and without limited DMC, and/or with and without AD) were tested with chi-square tests, using a level of significance of p < 0.05.ResultsAt a month before death 27% of people had limited DMC; this increased to 67% of people having limited DMC in the last week of life. The care received was in accordance with the patient’s preferences for the majority of older people, although less often for people who had limited DMC for more than a week. The majority of the proxies were satisfied with the communication between physician and the patient and them, regardless of DMC of the patient. Of people with an AD, a small majority of relatives indicated that the AD had been of additional value. Finally, no differences were found in the role of the relative and the satisfaction with this role between people with and without a proxy AD.ConclusionsAlthough relatives have positive experiences with ADs, our study does not provide strong evidence that (proxy) ADs are very influential in the last phase of life. They can best be seen as a tool for advance care planning.

Medical end-of-life decisions made for neonates and infants in the Netherlands, 1995-2001

End-of-life decision-making for severely affected infants might be influenced by technical advances and societal debates. In 2001, we assessed the proportion of deaths of infants younger than 1 year that were preceded by end-of-life decisions, by replicating a questionnaire study from 1995. This proportion increased from 62% to 68% (weighted percentages), but the difference was not significant. Most of these decisions were to forgo life-sustaining treatment. Decisions to actively end the lives of infants not dependent on life-sustaining treatment remained stable at 1%. The practice of end-of-life decision-making in neonatology of 2001 has changed little since 1995.