Snijdewind MC, Willems DL, Deliens L, Onwuteaka-Philipsen BD, Chambaere K. A Study of the First Year of the End-of-Life Clinic for Physician-Assisted Dying in the Netherlands. JAMA Intern Med. 2015;175(10):1633-1640. doi:10.1001/jamainternmed.2015.3978
Copyright 2015 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.
Right to Die NL, an organization in the Netherlands that advocates for the option of euthanasia, founded the End-of-Life Clinic in 2012 to provide euthanasia or physician-assisted suicide for patients who meet all legal requirements but whose regular physicians rejected their request. Many patients whose requests are rejected have less common situations, such as a psychiatric or psychological condition, dementia, or being tired of living.
To study outcomes of requests for euthanasia or physician-assisted suicide received by the clinic and factors associated with granting or rejecting requests.
Analysis of application forms and registration files from March 1, 2012, to March 1, 2013, the clinic’s first year of operation, for 645 patients who applied to the clinic with a request for euthanasia or physician-assisted suicide and whose cases were concluded during the study period.
Main Outcomes and Measures
A request could be granted, rejected, or withdrawn or the patient could have died before a final decision was reached. We analyzed bivariate and multivariate associations with medical conditions, type of suffering, and sociodemographic variables.
Of the 645 requests made by patients, 162 requests (25.1%) were granted, 300 requests (46.5%) were refused, 124 patients (19.2%) died before the request could be assessed, and 59 patients (9.1%) withdrew their requests. Patients with a somatic condition (113 of 344 [32.8%]) or with cognitive decline (21 of 56 [37.5%]) had the highest percentage of granted requests. Patients with a psychological condition had the smallest percentage of granted requests. Six (5.0%) of 121 requests from patients with a psychological condition were granted, as were 11 (27.5%) of 40 requests from patients who were tired of living.
Conclusions and Relevance
Physicians in the Netherlands have more reservations about less common reasons that patients request euthanasia and physician-assisted suicide, such as psychological conditions and being tired of living, than the medical staff working for the End-of-Life Clinic. The physicians and nurses employed by the clinic, however, often confirmed the assessment of the physician who previously cared for the patient; they rejected nearly half of the requests for euthanasia and physician-assisted suicide, possibly because the legal due care criteria had not been met.
In 2002, the Termination of Life on Request and Assisted Suicide Act came into force in the Netherlands, allowing euthanasia, the administering of lethal medication by a physician at the request of the patient, and physician-assisted suicide, providing lethal medication by a physician to a patient at his or her request, to patients who meet the legal due care criteria (Box 1).1,2 These criteria include a voluntary and well-considered request from the patient, who must be suffering unbearably without the prospect of improvement. Of all deaths in the Netherlands, 1.7% to 2.8% result from euthanasia or physician-assisted suicide according to a study3 published in 2012. Certainly, not all requests are granted; studies3- 6 conducted between 1990 and 2011 report rates of granting requests between 32% and 45%. Because some of these studies were based on a sample of patients who had already died, the percentage of requests granted in the general population may be lower. The reasons that requests did not result in euthanasia or physician-assisted suicide were that the patient died before a decision could be made, the patient withdrew the request, and the treating physician refused to provide euthanasia or physician-assisted suicide based on principle or because in his or her opinion the due care criteria had not been met.6- 8 A prior study9 indicated that patients whose requests were rejected continue to have a wish to die.
The attending physician has come to the conviction that the request from the patient is voluntary and well considered.
The attending physician has come to the conviction that the suffering of the patient is unbearable and without prospect of improvement.
The physician has informed the patient about his or her situation and prospects.
There are no more reasonable alternatives for the patient.
The physician has consulted at least one other, independent physician.
The physician has terminated the patient’s life or provided assistance with suicide with due medical care and attention.
Right to Die NL (Nederlandse Vereniging voor een Vrijwillig Levenseinde), an organization that advocates for the option of euthanasia in the Netherlands, founded the End-of-Life Clinic (Levenseindekliniek) in March 2012 to provide euthanasia or physician-assisted suicide to patients who meet all legal requirements but whose requests are rejected by their regular physicians (see Box 2 for information on the clinic’s operating procedures1,10,11). Patients apply to the clinic by completing an application form. The clinic operates throughout the country with mobile teams that consist of a physician and nurse. The mobile teams visit patients at home and assess their requests. The clinic requires patients to authorize review of their medical record.
When an application is received, the End-of-Life Clinic creates a registration file for the patient that includes the application form. When authorized by the patient, the clinic obtains the medical files from the treating physician or physicians. On the basis of the application form and the medical files, a nurse makes a first classification. Some applications are rejected. A mobile team, consisting of a nurse and physician working for the clinic, further assesses the others. During the study period, there were approximately 15 mobile teams. Reasons for rejection are as follows: (1) the patient will not authorize the clinic to view his or her medical files; (2) the patient has not spoken (and will not speak) with the treating physician about his or her request for euthanasia or physician-assisted suicide or the application to the End-of-Life Clinic; (3) the available information clearly reveals that the patient’s request will not meet the due care criteria; and (4) the patient has no current wish for euthanasia or physician-assisted suicide.
If a case is further assessed, the mobile team contacts the treating physician to discuss their reasons for rejecting the request and visit the patient (most often multiple times). In this stage, a case can be rejected if it seems unable to meet the due care criteria. If the mobile team decides that the due care criteria can be met, a physician from Steun en Consultatie bij Euthanasie in Nederland specifically trained to give independent consultations about requests for physician-assisted dying is consulted, as is required by Dutch law.1 A meeting then follows with the mobile team, another physician working for the clinic, and a lawyer. If all those participating in the meeting agree that the due care criteria can be met, a request for euthanasia or physician-assisted suicide is granted. During the entire process, the patient can withdraw his or her request at any time.
Physicians and nurses are part-time employees of the End-of-Life Clinic. Initially, the End-of-Life Clinic was financed by donations; during 2013 insurance companies started to finance care provided by the clinic. According to the clinic’s annual reports,10,11 the End-of-Life Clinic received 749 applications in 2013 and 1035 in 2014. The number of mobile teams increased in 2013 from 15 to 30 and in 2014 from 30 to 39.
During its first year, the End-of-Life Clinic expected to receive approximately 1000 applications, many of which would be about less common situations, such as requests from psychiatric patients and patients with dementia or who were tired of living12 and for whom, according to the clinic’s chair, extra caution is required.13 It was anticipated that in many instances the due care criteria would be met but the regular physician’s own criteria were stricter than the law required.12 Such cases, however, are inherently controversial; the terms used in the law are open to interpretation, and there are ongoing discussions about how they should be interpreted. The Royal Dutch Medical Association had serious concerns about the End-of-Life Clinic, arguing that its founding was undesirable and would create the false impression that euthanasia or physician-assisted suicide is a patient’s right.14- 17 In light of the concerns and to monitor its operations, the clinic keeps records of all applications and the ensuing decision process.
In this study, we report on all applications made in the first year of the End-of-Life Clinic’s operations. We address the following research questions: (1) How often do the different possible outcomes of applications for euthanasia or physician-assisted suicide occur (grant, reject, die before decision making is finalized, patient withdrawal)? and (2) Which factors are associated with the outcome of an application? The factors that we studied were sociodemographic patient characteristics (sex, age, marital status, children, living situation), clinical characteristics (medical condition, type of suffering), and other circumstances (time since the application was filed, willingness of the regular physician to perform euthanasia).
We included data from all the End-of-Life Clinic’s unique registration files created from March 1, 2012, to March 1, 2013. Each file contained the original application form completed by the patient, relatives, or regular physician and the final outcome. Application forms and outcome decisions were both dated, which allowed us to calculate the time between the application and the final decision.
In addition to questions about sociodemographic information, the application form had questions about diagnosis, type of suffering, how long the patient had been wishing for euthanasia or physician-assisted suicide, discussion of the request with family physician and/or specialist, and whether the regular family physician and/or specialist was willing to perform euthanasia or physician-assisted suicide.
On the basis of the information about diagnosis, we coded all cases as having 1 or more of the following medical conditions: cancer, cardiovascular diseases, neurologic (physical), neurologic (cognitive), pulmonary, rheumatoid, other physical discomfort, psychiatric or psychological condition, or being tired of living. We separated neurologic conditions that affected the cognitive function of a patient, such as dementia, because this may influence the assessment of the physician; we suspected that patients deemed to lack mental competence often have their requests rejected. A case was coded tired of living if patients stated their condition in such words and if no other medical condition was found. With the exception of being tired of living, a combination of conditions could occur. If the application form did not contain a clear diagnosis, 2 researchers (M.S. and K.C.) discussed the case until consensus was reached. If no agreement was reached or no indication of a diagnosis was found, the medical condition was coded as missing.
We further grouped medical conditions into 5 categories: (1) somatic condition (ie, patients who had as their condition cancer, cardiovascular diseases, neurologic [physical], pulmonary, rheumatoid, other physical discomfort, or a combination thereof); (2) psychological condition (ie, patients whose only medical condition was a psychiatric or psychological condition); (3) somatic and psychological condition (ie, patients who had both a psychiatric or psychological condition and one of the somatic conditions); (4) cognitive decline (ie, patients whose condition was neurologic [cognitive]); and (5) tired of living (ie, patients who had only the condition of being tired of living).
We identified 4 different outcomes of a request: the patient had received euthanasia or physician-assisted suicide, the request had been refused by the clinic, the patient had withdrawn the application, or the patient had died of a cause other than euthanasia or physician-assisted suicide (natural or self-inflicted). Reasons that requests were withdrawn were not recorded in the registration files.
We performed bivariate crosstab analyses with χ2 or Fisher exact (for 2 × 2 tables) significance testing (P < .05). We performed multivariate logistic regression analyses using the backward stepwise conditional method, with no interaction effects. We performed all analyses with SPSS statistical software, version 22.0 (SPSS Inc).
According to the Medical Research Involving Human Subjects Act (Wet medisch-wetenschappelijk onderzoek met mensen),18 the study did not require review by an ethics committee. The researchers ensured that the results precluded any identification of patient or physician.
During the 1-year study period, the End-of-Life Clinic received 709 unique applications. We excluded cases that had not been concluded (n = 53), cases in which the application form could not be retrieved (n = 4), cases in which the outcome was unknown (n = 4), and cases in which there was not an actual euthanasia or physician-assisted suicide request (n = 3). Thus, we studied 645 applications (91.0% of those received). Table 1 lists the characteristics of applicants.
Table 2 lists the outcomes of the requests and the elapsed time between the application to the clinic and the outcome. It took a mean of 5.7 months for a request to be granted. The mean time it took the clinic to handle a request was longer in the first than the second half of the year (4.7 vs 3.6 months) owing to the lower capacity of mobile teams in the first half of the year and a large number of applications in the clinic’s first month. In its first month, the clinic received 154 (21.7%) of the 709 application forms.
Of the 645 requests made by patients, 162 requests (25.1%) were granted, 300 requests (46.5%) were refused, 124 patients (19.2%) died before the request could be assessed, and 59 patients (9.1%) withdrew their request. The 162 granted requests comprised 92 cases in which the clinic performed euthanasia or physician-assisted suicide (56.8%), 23 cases in which the regular physician performed euthanasia or physician-assisted suicide (14.2%), and 47 cases in which the regular physician agreed to perform euthanasia or physician-assisted suicide in the (near) future (29.0%). Patients with a somatic condition or with cognitive decline had the highest percentage of granted requests. Patients with a psychological condition had the smallest percentage of granted requests. Six (5.0%) of 121 requests from patients with a psychological condition were granted, as were 11 (27.5%) of 40 requests from patients who were tired of living.
Table 3 lists the outcomes of the requests, according to the patient’s sociodemographic and clinical characteristics, living situation, and other circumstances. Patients whose requests were granted had an older mean age than those whose requests were rejected (77 years [n = 162] vs 61 years [n = 300]; P < .001) at the time of application; 32 (19.8%) were younger than 65 years, whereas 82 (53.7%) were 80 years or older. Within the group of patients with a granted request, patients often had a somatic condition and most often stated they had physical decline or loss of strength (89.4%) (n = 144).
Compared with granted requests, patients whose requests were rejected were more often single (174 [58.2%] vs 42 [25.9%]) and without children (148 [49.5%] vs 31 [19.1%]). Their medical condition was often psychiatric or psychological (122 [43.6%]). Within the group of patients whose requests were rejected, psychological suffering (249 [83.6%]) and loneliness (213 [71.5%]) were mentioned most as the type of suffering. Requests that had been ongoing for more than a year were less likely to be granted than those that had been initiated more recently.
Table 4 lists the factors that were independently associated with a request being granted in multivariate analysis. We compared granted requests to rejected requests (n = 417, owing to missing data for multiple variables). Factors independently associated with a request being granted included having more than one child and having tiredness or loss of autonomy. Factors associated with a request being rejected included being single, a psychological condition, and having loneliness or loss of mental capacity. The multivariate model explained 37.8% of the total variance in outcome.
During its first year, the End-of-Life Clinic granted approximately a quarter of requests for physician-assisted suicide and euthanasia and rejected slightly less than half, particularly requests that involved psychological issues. In these latter cases, the clinic often confirmed the assessment of the physician or physicians who had previously cared for the patient. Other patients withdrew their requests or died while their requests were still being assessed.
We included all available application forms in our study. Thus, the likelihood of bias owing to the provision of socially desirable answers by patients was low. A limitation is that the patient or a relative usually completed the application form; information on the medical condition relied on the patient’s own report, not on a review of the medical records held by the treating physician. The clinic’s decisions about whether to grant a request relied on review of the medical records, as well as interviews and discussions with the patient and family (Box 2). We only had access to the information in the registration file, which included the application form, the decision, and the final outcome. We lacked information about whether patients whose requests were granted had euthanasia or physician-assisted suicide as the method for physician-assisted dying and whether patients who died before their requests could be assessed died of natural causes or committed suicide. We also lacked information on the reasons why requests were withdrawn or were still in process at the end of the study period. It is also possible that patients who were classified as tired of living, in fact, had a medical condition. Because we only had access to the registration file, however, we were unable to determine whether this was the case.
The End-of-Life Clinic granted fewer requests for euthanasia and physician-assisted suicide than are granted in the Netherlands on the whole (25% vs 32%-45%).3- 6 The large proportion of less common cases that the clinic received may explain this finding. Patients may have searched for a long time for a physician willing to grant their request. If a request for physician-assisted dying has been rejected by several physicians, the case may have been less likely to meet the due care criteria. This reasoning may also help to explain why the clinic was less likely to grant requests that had been ongoing for more than a year than those that had been initiated more recently.
Generally, patients with cancer are the most common group to request and receive euthanasia. Patients with cancer, however, were underrepresented in the requests granted by the clinic compared with the overall percentage of patients with cancer receiving euthanasia or physician-assisted suicide in the Netherlands (23% vs 79%).3 This was to be expected because physicians are most often willing to grant a request for physician-assisted dying for patients with advanced cancer, so only a small group of these patients applies at the End-of-Life Clinic. In addition, of the applicants receiving euthanasia or physician-assisted suicide, the proportion from those older than 80 years was considerably higher than in the Netherlands as a whole (53.7% vs 24.5%).3 This finding might be explained by the clinic receiving many applications from patients with non–life-threatening multimorbidity and patients who were tired of living, groups who were likely to have had more problems finding a physician prepared to accept their request.
As the clinic anticipated, many patients who applied had psychological issues.12 Only a small percentage of these patients had their requests granted, and the likelihood was significantly lower than for patients with a somatic illness. This finding suggests that physician assistance in dying for people with psychological issues, in the absence of a serious physical illness, is difficult for the medical teams of the clinic just as it is for general medical practitioners and Dutch society. Euthanasia and physician-assisted suicide are controversial in the Netherlands for patients with psychiatric issues.19,20 Approximately two-thirds of physicians find it inconceivable to assist in dying when the patient has a psychiatric disease.21 Compared with physical conditions, physicians are less likely to regard psychosocial conditions as unbearable22; in those cases, one of the legal due care criteria is not met. A more detailed study of decision making in such cases is warranted. The very low likelihood of a request being granted could discourage patients with a psychiatric disorder or chronic depression from applying in the future. Applications at the clinic should be monitored to determine whether fewer applicants with psychosocial issues apply and what the outcome of such requests is.
The finding that patients who were married or living together and those who had more than one child were more likely to have requests granted suggests that the views of family and domestic partners are important and that their involvement and support influence the clinic’s decisions. Previous studies23,24 have found that relatives have important roles in the process and can be a source of information when assessing the due care criteria.8 These prior studies, however, did not reveal the actual effect on the outcome of a request. For end-of-life decisions, a good physician-patient relationship is of great importance.24- 26 Family physicians, who perform most euthanasia or physician-assisted suicide in the Netherlands,3 often have long-standing relationships with their patients. In the absence of a long-lasting care relationship, as is the case for the clinic’s mobile teams, the role of relatives may become more prominent because they can elucidate the patient’s history and change in circumstances over time.
Some patients died before the clinic had completed its assessment, and some withdrew their requests. A physician does not want to unduly postpone the decision about whether to provide assistance with dying but should also reserve enough time for the patient to be able to reconsider the request. This finding is in line with previous research.4 In the future, the percentage of patients who die before the clinic’s assessment is completed may decrease because the number of mobile teams increased in 2013 and 2014 (Box 2).
Our findings suggest that physicians in the Netherlands have more reservations regarding less common reasons that patients request euthanasia and physician-assisted suicide than the medical staff working for the End-of-Life Clinic. The physicians and nurses employed by the clinic, however, often confirmed the assessment of the physician who previously cared for the patient; they rejected nearly half of the requests for euthanasia and physician-assisted suicide, possibly because the legal due care criteria had not been met.
Accepted for Publication: June 18, 2015.
Corresponding Author: Marianne C. Snijdewind, MA, Academic Medical Center, Department of General Practice, J2-219, Meibergdreef 15, 1105 AZ Amsterdam, The Netherlands (firstname.lastname@example.org).
Published Online: August 10, 2015. doi:10.1001/jamainternmed.2015.3978.
Author Contributions: Ms Snijdewind and Dr Chambaere had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Snijdewind, Willems, Onwuteaka-Philipsen, Chambaere.
Acquisition, analysis, or interpretation of data: Snijdewind, Deliens, Onwuteaka-Philipsen, Chambaere.
Drafting of the manuscript: Snijdewind, Chambaere.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Snijdewind, Onwuteaka-Philipsen, Chambaere.
Obtained funding: Willems, Onwuteaka-Philipsen.
Administrative, technical, or material support: Willems.
Study supervision: Willems, Deliens, Onwuteaka-Philipsen, Chambaere.
Conflict of Interest Disclosures: Ms Snijdewind reported receiving financial support from the End-of-Life Clinic (Stichting Levenseindekliniek) for the submitted work. No other disclosures were reported.
Funding/Support: This study was supported by the End-of-life Clinic (Stichting Levenseindekliniek).
Role of the Funder/Sponsor: The funding source had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and the decision to submit the manuscript for publication.
Additional Contributions: An independent advisory committee that consisted of researchers and practitioners monitored the study: A. van der Heide, PhD, professor of end-of-life care and decision making; Erasmus MC, G. van der Wal, PhD, professor by special appointment quality of care; VU University Medical Center, E. van Wijlick, MSc, policy adviser to the Royal Dutch Medical Association; P.M. de Jong, MD, former director of Right to Die NL; and H. W. van Zoest, MD, palliative care consultant and a physician from the Steun en Consultatie bij Euthanasie in Nederland.