Special Report
Evaluation of the Notification Procedure for Physician-Assisted Death in the Netherlands
N Engl J Med 1996; 335:1706-1712November 28, 1996
- Abstract
Background
In the Netherlands, a notification procedure for physician-assisted death has been in use since 1991. It requires doctors to report each case to the coroner, who in turn notifies the public prosecutor. Ultimately, the Assembly of Prosecutors General decides whether to prosecute. Although physician-assisted death remains technically illegal, doctors are extremely unlikely to be prosecuted if they comply with the requirements for accepted practice. In 1995, the ministers of health and justice commissioned an evaluation to determine the adequacy of the notification procedure.
Methods
A random sample of 405 physicians were interviewed. We also interviewed 147 physicians who had reported cases of physician-assisted death and 116 coroners, and we reviewed 353 judicial files of reported cases. In addition, we interviewed 48 public prosecutors and reviewed the minutes of the Assembly of Prosecutors General for 1991 to 1995 and all published court decisions from 1981 through 1995.
Results
In 1995, about 41 percent of all cases of euthanasia and physician-assisted suicide were reported. There were no major differences between reported and unreported cases in terms of the patients' characteristics, clinical conditions, or reasons for the action. Most patients had cancer and were described as suffering “unbearably” and “hopelessly.” Of the 6324 cases reported during the period from 1991 through 1995, only 13 involved prosecution of the physician. The majority of respondents in the groups interviewed thought that all cases of physician-assisted death should be reviewed, although most doctors thought the review should be performed by other doctors, and there was substantial concern about the burden associated with the reporting procedure.
Conclusions
Substantial progress in the oversight of physician-assisted death has been achieved in the Netherlands. The reporting procedure could be more streamlined and less threatening.
Media in This Article
Table 1
Physician-Assisted Deaths Reported to Public Prosecutors, Discussed in the Assembly of Prosecutors General, and Subjected to Inquests, Prosecutions, and Published Court Decisions, 1981–1995.Table 2
Characteristics of Reported and Unreported Cases of Euthanasia and Assisted Suicide.Article Activity
- Article
Medical decisions are normally made in the privacy of the doctor–patient relationship.1 Decisions that involve physician-assisted death, however, require at least regulatory oversight because of the risk of abusing vulnerable patients.2 A primary concern with regard to physician-assisted death is whether it is possible to establish adequate safeguards against such abuses.3
In the Netherlands, physician-assisted death is still subject to criminal law. Yet euthanasia and physician-assisted suicide have been practiced with increasing openness since the 1970s and are supported by public opinion, the majority of physicians, and case law.4-6 Requirements for accepted practice have been formulated by courts and the medical profession, and in general, a physician will not be prosecuted if he or she acts in accordance with these requirements.7 The requirements are as follows: the patient must consider his or her suffering unbearable and hopeless; the wish to die must be well considered and persistent; the request must be voluntary; the physician must consult at least one other physician; and the physician may not ascribe the death to natural causes and is obliged to keep records. In addition, most hospitals and nursing homes have written policies governing euthanasia and assisted suicide.8
To establish a mechanism for public oversight, a notification procedure was agreed on in 1990 by the minister of justice and the Royal Dutch Medical Association. This procedure has been in use since 1991 and was enacted legally by the Dutch legislature in June 1994.
The purposes of the notification procedure are to encourage physicians to disclose cases in which they have assisted in a patient's death, to promote adherence to the requirements for accepted practice, and to ensure that the reporting of physician-assisted death is uniform throughout the country. According to the procedure, a physician who has assisted in a patient's death does not issue a certificate of natural death but instead informs the coroner that it was a physician-assisted death. The physician is expected to use an official checklist with questions about the medical history, the request of the patient, the drugs used to cause death, and the report of the other physician consulted. The coroner then conducts a postmortem examination, collects the relevant data, informs the public prosecutor of the death, and submits all the relevant documents. The public prosecutor decides whether to permit burial or cremation, examines the record, and presents a judgment to the prosecutor general. The latter, usually assisted by an advocate general, presents the case, together with his or her own opinion, to the Assembly of Prosecutors General, which has five members. The assembly provisionally decides whether or not to prosecute. The final decision with regard to prosecution is made by the minister of justice.
In 1995 the ministers of health and justice commissioned an evaluation of the notification procedure to determine whether it is serving the purposes for which it was established.
Methods
We interviewed a stratified random sample of 405 physicians. This sample was representative of all Dutch physicians. The study methods are described elsewhere in this issue.9
We also interviewed a random sample of 175 physicians, stratified according to judicial multidistrict area and type of practice (general practice, medical specialty, nursing home practice), selected from the 741 physicians reporting cases of physician-assisted death (a total of 804) between August 1, 1994, and February 1, 1995. A total of 28 physicians were not interviewed: 6 could not be traced, 4 had already been included in the larger random sample, 1 was involved in a case that had not yet been closed, and 17 (10 percent) refused to participate in the study. In addition to background characteristics, the 147 physicians were asked about the reported cases of physician-assisted death, the most recent unreported case (if applicable), and their opinions on the notification and review procedures.
We interviewed 116 of the coroners involved in the cases reported by the 147 physicians. In the Netherlands, coroners can be private general practitioners or physicians working for public health departments. To obtain a sample that would be representative of both groups, the coroners were selected in such a way that all public health departments involved were represented, and no more than two coroners per public health department were interviewed. None of the coroners refused to participate. There were 34 private general practitioners and 82 physicians working for public health departments.
The interviews with physicians and coroners were conducted by 21 experienced physicians and 4 experienced coroners, respectively, all of whom received training in interviewing. The interviews were based on an extensive, structured questionnaire and lasted for 2 1/2 hours, on average.
To extrapolate the results of the interviews with the 147 physicians to all physicians who reported cases between August 1, 1994, and February 1, 1995, we used weights that accounted for the stratification of the sample. Similarly, to extrapolate the results of interviews with the 116 coroners to all coroners who were involved in the reported cases, we used weights that took into account the selection procedure.
Of the 804 cases of physician-assisted death reported between August 1, 1994, and February 1, 1995, 363 were randomly selected from the public prosecutors' files, stratified according to judicial district. Ten files could not be found in the public prosecutors' offices. Information about the characteristics of the cases was obtained from the other 353 files.
The overall numbers of reported cases per year were derived from the registers of the public prosecutors and from a data base set up by the ministry of justice for this study.
Detailed interviews were also conducted with 48 officials: 39 public prosecutors (2 from each judicial district [3 from three large districts]) and the 4 advocates general and 5 prosecutors general involved in the five judicial multidistrict areas.
The confidential minutes of the Assembly of Prosecutors General for sessions involving reported cases of physician-assisted death were made available to us for the purpose of this study. All minutes of meetings from 1991 through 1995 were independently analyzed by two investigators. All published court decisions concerning cases of physician-assisted death from 1981 through 1995 were also analyzed.
The 95 percent confidence intervals for differences between proportions were calculated with McNemar's test, which takes into account the fact that these are matched data. Calculations were performed with the Confidence Interval Analysis computer program.10
Results
Number of Reported Cases
The number of reported cases of physician-assisted death gradually increased to 486 in 1990, increased steeply to 1201 in 1992, and then gradually leveled off to 1466 in 1995 (Table 1Table 1
Physician-Assisted Deaths Reported to Public Prosecutors, Discussed in the Assembly of Prosecutors General, and Subjected to Inquests, Prosecutions, and Published Court Decisions, 1981–1995.). The estimated numbers of cases of euthanasia and physician-assisted suicide were 2700 in 1990 and 3600 in 19959; the notification rate thus increased from about 18 percent to 41 percent during that period. Cases of physician-assisted death without the patient's explicit request were rarely reported: two cases were reported in 1990, and three in 1995. (In the Netherlands we do not use the term “euthanasia” for these cases.)Physicians' Reasons for Reporting or Not Reporting Cases
The most important reasons cited for reporting cases of physician-assisted death were as follows: the physician reports all cases (75 percent), reporting is obligatory (17 percent), it is the official policy of the physician's institution (13 percent), and it gives an account to society (13 percent). (Some physicians gave more than one reason.) Asked about their experiences with the notification procedure, some physicians had negative responses (it is time-consuming [37 percent], burdensome [30 percent], incriminating [11 percent], or a breach of privacy [5 percent]); some were neutral (30 percent); and others said they felt supported (19 percent), had positive views (13 percent), or felt relieved by the procedure (7 percent). (Some physicians gave more than one response.)
In the interviews with the random sample of 405 physicians, 49 said they had not reported the most recent case of assisting with a patient's death at the explicit request of the patient. They gave the following reasons for not doing so: a wish to avoid the fuss of a judicial inquiry (25 physicians), a wish to protect the patient's relatives from a judicial inquiry (12), a request from the patient's relatives to be protected from a judicial inquiry (10), fear of prosecution (10), failure to fulfill the requirements for accepted practice (8), and the belief that assistance with death should be a private matter between doctor and patient (6). Of these 49 physicians, 7 said they would never report a case of physician-assisted death. Of the 70 respondents who had not reported the most recent case of assisting with a patient's death in the absence of an explicit request from the patient, 37 said that in their opinion it had been a natural death, and 36 said they would never report such a case.
Characteristics of Reported and Unreported Cases
Of the 147 respondents who had reported cases of assisted death, 84 said they had decided not to report at least one other case. (After the sample had been weighted, these respondents corresponded to an estimated 52 percent of all physicians who reported a case of physician-assisted death.) These 84 physicians were also asked about the most recent unreported case. Only 1 of the reported cases had involved assistance in ending life without an explicit request from the patient, whereas 16 of the 84 most recent unreported cases had involved assistance without the patient's explicit request.
Features of the other 68 reported and unreported cases of euthanasia and physician-assisted suicide are shown in Table 2Table 2
Characteristics of Reported and Unreported Cases of Euthanasia and Assisted Suicide..There were no major differences between reported and unreported cases in terms of the patients' characteristics or the basis for the decision to provide assistance (i.e., whether there was an explicit request and unbearable and hopeless suffering). However, the procedural requirements were met less often in the unreported cases: a written request (44 percent in the unreported cases vs. 73 percent in the reported cases), consultation with another physician (11 percent vs. 94 percent), and a written report (57 percent vs. 97 percent). A comparison of the most recent reported and unreported cases in the larger random sample of physicians had similar results. A comparison of the most recent (reported and unreported) cases in 1990 and 1995 showed no differences in the percentage of cases in which the substantive requirements for accepted practice had been met. The results differed, however, with respect to procedural requirements. The decision had not been discussed with a colleague in 11 percent of the cases in 1995, as compared with 16 percent in 1990, and a written report was available in 81 percent of the cases in 1995, as compared with 60 percent in 1990. As shown in Table 1, the number of reported cases also showed a marked increase.
Notification and Conclusion of Cases
Before 1990, 60 percent of all reported cases of physician-assisted deaths were reported to a coroner, 42 percent to a public prosecutor, and 42 percent to the police. After 1990, 98 percent of reported cases were reported to a coroner, 7 percent to a public prosecutor, and none to the police. In 56 percent of the 353 judicial files studied, the physician had used the official checklist, which is part of the notification procedure, to present the relevant information.
The time between notification by the physician and notice of the conclusion of the judicial procedure was, on average, 103 days for cases that were dismissed without further examination. This period varied greatly by district. Cases that were the subject of an inquest or were brought to court took much longer, sometimes several years.
Examination by Public Prosecutors
Of the 6324 cases reported from 1991 through 1995, 120 were discussed by the Assembly of Prosecutors General. Inquests were conducted in 21 cases (involving 22 physicians) and dismissed; 13 physicians were prosecuted. The percentage of cases that resulted in prosecution was much smaller than that in the previous decade (Table 1). The most important reasons for further discussion in the assembly were as follows: the patient was not yet in the terminal phase of disease (in 38 percent of the cases), the request was absent or unclear (25 percent), the consultation was absent or inadequate (24 percent), there was doubt that the patient's suffering had been unbearable and hopeless (23 percent), and the physician's performance was inadequate (13 percent) (Table 3Table 3
Most Important Reason for Discussing 120 Reported Cases in the Assembly of Prosecutors General, 1991–1995.). Prosecution was initiated in cases of flagrant violation of the requirements for accepted practice and, in some cases, to establish a test case to elicit jurisprudence. In the overall total of 20 published final court decisions regarding 18 cases of physician-assisted death, 9 physicians were acquitted, mostly because their actions were deemed medically necessary; 2 were discharged from further prosecution, 3 were found guilty but not punished, and 6 were given suspended sentences of one week to six months (Table 1).Opinions about Notification and Review Procedures
The majority of the respondents in the different groups interviewed thought that every case of physician-assisted death should be reviewed; however, 35 percent of respondents in the large random sample of physicians did not(Table 4Table 4
Opinions about Notification and Review Procedures.). Of the physicians in this group who thought every case should be examined, 30 percent thought the decision should be reviewed only before the fact. In the other groups, this percentage was lower. The majority of respondents in the four groups thought that if cases were to be reviewed before the fact, the review should be performed by members of the medical profession. Most physicians thought the review should be carried out by an independent consultant. Only one public prosecutor considered it sufficient to review cases before the fact. In each group, a large proportion of respondents thought it necessary to review cases both before and after the fact. Opinions about who should review cases after the fact varied widely and often reflected the respondent's position. Thus, 51 percent of the public prosecutors thought they should have the responsibility for the review, and 63 percent of the coroners thought it should be their responsibility.Discussion
This study provides insight into the functioning of a legal notification procedure for physician-assisted death. The study had the following strengths: most of the respondents were willing to participate in the extensive interviews (refusal rate, 0 to 11 percent); we had complete access to all confidential documents; the study was supported by the Royal Dutch Medical Association, the chief inspector for health care, and the ministers of health and justice; and the data collected could not be used for legal prosecution.
Does the notification procedure encourage physicians to disclose their practice of assisting with death? The rate of notification about cases of euthanasia and physician-assisted suicide rose from an estimated 18 percent in 1990 to about 41 percent in 1995. Notification about cases that did not involve the explicit request of the patient remained very low, which is not surprising in view of the statement by the previous minister of justice that reporting such acts would always be prosecuted.
Does the notification procedure promote adherence to the requirements for accepted practice? A comparison of the 1990 and 1995 data shows that procedural requirements are met more often nowadays. Procedural requirements, of course, are also met more often in reported cases than in unreported cases. The substantive requirements for accepted practice were met in the large majority of cases, reported and unreported, and have been since 1990.
Does the notification procedure ensure that the reporting of physician-assisted death is dealt with uniformly throughout the country? Uniformity in reporting has been obtained to a large extent at the beginning and at the end of the notification procedure: almost all reported cases have been reported to a coroner, and all reported cases have finally been presented in the Assembly of Prosecutors General, which promotes uniformity in the prosecution policy in all districts. Other aspects of the notification procedure still vary greatly. The checklist that is part of the procedure is used by only about half the physicians, and the time between notification and informing the physician whether the case has been dismissed varies widely among districts.
The results of our study show that the notification procedure has improved public oversight in this area. At the same time, our data show that there is still a large difference between the number of cases reported and the number that should be reported. This is particularly true of cases in which there was no explicit request from the patient.
Our study shows that a large majority of Dutch physicians are willing to have cases of physician-assisted death reviewed. The very high rates of participation in studies such as ours reflect the support of the medical profession for some form of public oversight in this area. Most physicians, however, seem to prefer that cases not be examined by public prosecutors. Perhaps the notification procedure should be modified in that respect. If physicians were better informed about the percentage of cases that are prosecuted and the reasons for prosecution, their fear of prosecution might be largely eliminated, and their willingness to report cases increased. The review of reported cases could also be improved by reducing the burden associated with the procedure and the required paperwork and by completing the review more rapidly. Explicit formulation of the nonprosecution policy by public prosecutors might also increase physicians' willingness to report cases. Furthermore, an explicit policy might enable cases to be settled at the district level, while maintaining uniformity throughout the country. If there is a further increase in the number of reported cases, that will become necessary in order to avoid congestion at the level of the Assembly of Prosecutors General.
The number of reported cases of physician-assisted death will probably continue to increase, but there will always be some cases in which not all the requirements are met, and these are the cases that are likely not to be reported. The most difficult situations will continue to involve terminally ill, suffering patients who are not able to express their wishes and have no advance directives. Physicians are likely to be more open to review if it is performed in a less threatening and more educational fashion, with more involvement from the medical profession.
We believe that cautious optimism is warranted. There seems to be only a small increase in the number of cases of euthanasia, there are indications that decision making has improved, the number of reported cases has greatly increased, and options for further improvement in public oversight have been identified. Nevertheless, there are limits to any system of oversight. Some decisions will continue to be considered by both doctor and patient to be private, and some tension will remain between the public and the private domain, as in other aspects of medicine. Close monitoring of the practice of physician-assisted death is both necessary and possible.
Supported by a grant from the Dutch Ministry of Justice and Ministry of Health, Welfare, and Sports.
We are indebted to Johanna H. Groenewoud, M.D., Agnes van der Heide, M.D., Ph.D., and Martien T. Muller, Ph.D., for their contributions to the study and the manuscript; to Rita Verdurmen for her contribution to the study; to David Schweigman, M.A., and Etienne M.H.H. Wolfs for their contribution to the judicial-file study; to the interviewers for interviewing the physicians and the public prosecutors; to the members of the steering committee for their continuous support during the study; to the physicians and public prosecutors who provided the information for the study; and to the Royal Dutch Medical Association and the chief inspector for health care for their support of the study.
Source Information
From the Institute for Research in Extramural Medicine (G.W., J.M.B., B.D.O.-P., D.L.W., I.H., P.J.K.), the Department of General Practice, Nursing Home, and Social Medicine (G.W.), and the Department of Epidemiology and Biostatistics (P.J.K.), Vrije Universiteit Amsterdam, Amsterdam; and the Department of Public Health, Erasmus University, Rotterdam (P.J.M.) — both in the Netherlands.
Address reprint requests to Dr. van der Wal at Vrije Universiteit, EMGO Institute, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands.
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