Death on demand? An analysis of physician-administered euthanasia in The Netherlands

Death on demand? An analysis of physician-administered euthanasia in The Netherlands Abstract Background Physician-administered euthanasia (PAE) was legalized, along with physician-assisted suicide (PAS), in The Netherlands in 2001. Sources of data Annual reports of the Dutch Regional Euthanasia Review Committees, the committees’ 2015 published Code of Practice and research studies Areas of agreement There is a general openness about the practice of PAE/PAS in The Netherlands and an avoidance of misleading euphemisms. The 2001 law also includes arrangements for post-event review of PAE/PAS decisions. Areas of controversy Rising numbers of annually reported deaths from PAE and uncertainty over actual numbers. Movement away from the principle that euthanasia must take place within an established doctor–patient relationship. Increasing extension of the 2001 law to people with mental health conditions, dementia and multiple co-morbidities. Nature of the post-event scrutiny applied to reported cases. Growing points The predominance of PAE over PAS where both are legalized raises questions over how these two acts are perceived and whether there are implications for such laws. Areas for timely research Are the criteria for PAE/PAS in the 2001 law appropriate for a law of this nature? What should be the respective roles of the second-opinion doctors and the review committees? euthanasia, suffering, due care, review, well-considered Introduction Physician-administered euthanasia (PAE) describes a situation where a doctor administers a lethal dosage of drugs to a patient, at that patient’s request, in order to bring about his or her death. In most countries such acts are illegal and considered contrary to the ethics of medical practice. In recent years, however, PAE has been legalized in four jurisdictions—The Netherlands (2001), Belgium (2002), Luxembourg (2009) and Canada (2016). In The Netherlands and Canada PAE is one of two legalized acts, the other being physician-assisted suicide (PAS), where a doctor supplies lethal drugs for self-administration by the patient rather than administers them. This article focuses on The Netherlands, where PAE has been legalized for longest and where there is most evidence of outturn. It draws on the fifteen annual reports published by the Dutch Regional Euthanasia Review Committees (see below), on a Code of Practice published by them in 2015, and on studies of the subject including the two most recent of a series of quinquennial surveys of end-of-life decisions in The Netherlands. It addresses both PAE and PAS, though it will be clear that in The Netherlands almost all such deaths (96% in 2016) consist of PAE. The 2001 Act In 2001, The Netherlands passed a law1 creating an exception to the Criminal Code. Under the Code ending another person’s life or assisting a suicide was, and remains, a criminal offence. The 2001 Act created an exception whereby the Code would not apply if a physician had terminated the life, or assisted the suicide, of a patient on request and if certain ‘due care’ criteria had been observed. The 2001 Act formalized what had been a growing practice in The Netherlands over the previous 20 years, during which doctors who had administered voluntary euthanasia or assisted a patient’s suicide had been able to invoke a ‘defence of necessity’—meaning that they had been able to argue as a defence that ending or helping to end a patient’s life had been necessary to relieve that patient’s suffering. Article 2 is the central feature of the 2001 Act. It sets out the ‘due care’ criteria the observance of which render an act of voluntary euthanasia or assisted suicide immune from prosecution. It states that the physician must be satisfied that the patient’s request is ‘voluntary and well-considered’, that his or her suffering is ‘lasting and unbearable’ and that there is ‘no other reasonable solution’. The physician must inform the patient about his or her condition and prognosis and consult at least one other, independent doctor. If the physician considers these conditions to have been met, he or she may administer voluntary euthanasia to the patient or assist his or her suicide by supplying a lethal dosage of drugs. The 2001 Act does not specifically require that the requesting patient should have mental capacity: the presence of capacity is seen as an element of a well-considered request. Nor does it require that the patient should have been diagnosed as having a terminal illness. The two principal criteria are a voluntary and well-considered request and lasting and unbearable suffering. Under the Act voluntary euthanasia and assisted suicide are available, subject to observance of the ‘due care’ criteria, to adults; to persons aged between the ages of 16 and 18 if the parents ‘have been involved in the decision process’; and to minors over the age of 12 who have parental agreement. The Act also provides that, if a patient aged 16 or over ‘is no longer capable of expressing his will but prior to reaching this condition was deemed to have a reasonable understanding of his interests and has made a written statement containing a request for termination of life, the physician may carry out this request’. The Act charged Regional Euthanasia Review Committees with examining notifications of voluntary euthanasia or assisted suicide from Dutch doctors and adjudicating on whether the requirements of ‘due care’ had been observed. There are five such regional committees and the 2001 Act requires them collectively to issue annual reports describing their findings. In fact, the committees pre-dated the 2001 Act. They had existed since 1998 in order to review reported cases of voluntary euthanasia or assisted suicide under the ‘defence of necessity’ regime and to offer advice on them to the Public Prosecution Service. Under the 2001 Act this role changed. In the words of the committees’ 2006 report, ‘the review committees, which previously had a purely advisory role, now assess whether the physician has fulfilled the due care criteria. They now refer notifications to the Public Prosecution Service and the Health Care Inspectorate only if the due care criteria have not been fulfilled’.2 Each committee is composed of a lawyer, who is also the chair, a physician and an ethicist (plus deputies for each) and a secretary. If a physician assists a suicide or administers voluntary euthanasia, he or she must notify the municipal pathologist, who reports the death to the relevant review committee and submits the report of the physician who performed the act, the report of a second (independent) physician and, if appropriate, the patient’s advance directive requesting PAE or PAS. Where necessary, the committee may request the physician to supplement his or her report either orally or in writing. The data The committees, which are referred to hereafter by their Dutch acronym RTEs, have presented a consolidated report for each calendar year from 2002 onwards. These show the number of notifications of voluntary euthanasia and assisted suicide submitted to them and address issues which have arisen during the year in considering those notifications. Numbers Figure 1 shows the number of cases notified to the RTEs in each year from 2002 to 2016. Fig. 1 View largeDownload slide Notifications of PAE/PAS 2002–16. Fig. 1 View largeDownload slide Notifications of PAE/PAS 2002–16. Since the 2001 Act was passed the annual number of reported deaths from PAE and PAS has risen from 1882 (2002) to 6091 (2016). The 5 years immediately following the passing of the Act saw a more or less level trend in the number of reported cases and it was claimed by some that the warnings of opponents of legalisation had been shown to be groundless. After 2006, however, the numbers began to rise and since 2009 have increased significantly year by year. There were more than three times as many deaths from PAE or PAS reported in 2016 as in 2006. Out of a total of 49 287 deaths from PAE or PAS notified to them over the 15-year period from 2002 to 2016 the RTEs have ruled that only 89 (less than a quarter of 1%) failed to meet the ‘due care’ requirements of the 2001 Act. In 2016 just 10 cases out of 6091 (<0.2%) were ruled out of order. In that year 1 in 25 of all deaths occurring in The Netherlands was the result of either PAE or PAS. This death rate is the equivalent of some 21 000 deaths annually in England and Wales. In 2016 only 3.5% of deaths under the 2001 Act were from PAS. Another 0.3% were deaths resulting from a combination of PAS and PAE. In 96% of cases death was the result of the administration of lethal drugs by a doctor to a patient. This predominance of PAE over PAS where both are legally available does not appear to be a specifically Dutch phenomenon. Initial reports3 on the outturn of Canada’s 2016 ‘Medical Aid In Dying’ law indicate a similar pattern. Illnesses Of the 6091 reported cases of PAE or PAS in 2016 83% involved terminal or other serious physiological illnesses, including cancer, disorders of the nervous system, cardiovascular disease and lung disease. Seventeen percent (1 in 6) of deaths were of people with other conditions, including mental illness, dementia and multiple geriatric symptoms. Deaths where euthanasia was approved on the basis of mental illness or dementia have been rising in recent years, as Table 1 shows. Table 1 Deaths from PAE/PAS where mental health conditions or dementia formed the basis of suffering Year  Mental health  Dementia  Total  2010    25  25  2011  13  49  62  2012  14  42  56  2013  42  97  139  2014  41  81  122  2015  56  109  165  2016  60  141  201  Year  Mental health  Dementia  Total  2010    25  25  2011  13  49  62  2012  14  42  56  2013  42  97  139  2014  41  81  122  2015  56  109  165  2016  60  141  201  The SCEN network In most cases doctors who consider requests for euthanasia or assisted suicide turn to Support and Consultation for Euthanasia in The Netherlands (SCEN) doctors for the required second, independent, opinion required by the law. SCEN consists of a network of doctors who have been trained to serve as independent consulting physicians to ensure compliance with the law and to support the doctors making the decisions. A Westminster parliamentary select committee visiting The Netherlands in 2004 was told by a Dutch SCEN physician that ‘because of our training, but also because of our experience and the countrywide availability of SCEN physicians, this guarantees a uniform and independent view and…control of the procedure’. He added that, ‘after we have carried out our consultation, we give the physician a written report in which we state whether or not the procedure has been completed’. The committee was also told that, if euthanasia is carried out, the SCEN report is sent to the appropriate review committee ‘which will give the final judgement’.4 Issues Numbers Establishing the incidence of PAE/PAS in The Netherlands is not so straightforward as might appear at first sight. As Figure 1 shows, the RTEs reported that in 2015 they had received 5516 notifications of euthanasia or assisted suicide. However, according to Statistics Netherlands, there were 6822 deaths from these causes in that year. Nor is this disagreement of data a single-year phenomenon. In 2010 the RTEs recorded 3136 notifications of PAE or PAS, whereas Statistics Netherlands reported 4051 cases. The detailed figures are shown in Table 2. Table 2 Incidence of PAS/PAE in The Netherlands in 2010 and 2015 as recorded by RTEs and Statistics Netherlands   PAE  PAS  PAS + PAE  Total  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  2010  2910  3859  182  192  44  N/A  3136  4051  2015  5277  6672  208  150  31  N/A  5516  6822    PAE  PAS  PAS + PAE  Total  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  2010  2910  3859  182  192  44  N/A  3136  4051  2015  5277  6672  208  150  31  N/A  5516  6822  View Large How are these significant differences to be explained? The RTEs record the number of cases of PAE or PAS which have been notified to them by doctors. Statistics Netherlands, on the other hand, reports estimates based on quinquennial research studies into end-of-life decision-making. These studies have been conducted every 5 years since 1990. They are based on random samples, taken from the central death registry of Statistics Netherlands, of persons whose deaths were registered in the period August–November of the year concerned and on anonymous responses from doctors as to whether an end-of-life decision was involved and, if so, what was its nature- for example, whether it had comprised withdrawal of life-sustaining treatment or intensified alleviation of symptoms with a concomitant risk of hastened death or had involved PAE or PAS. The 1990 baseline for these reports pre-dated legalisation of this last category of actions. The researchers’ 2010 report stated that ‘the absolute number of cases of euthanasia or PAS in 2010 was about 4050’ and that ‘in 2010, 3136 (77%) cases of euthanasia or PAS were reported to euthanasia review committees in the Netherlands’.5 As Table 2 shows, the 4050 figure matches the data on deaths from PAS/PAE recorded by Statistics Netherlands for 2010. A similar conflict of data is apparent when we come to the next quinquennial report,6 which was published in 2017 and related to end-of-life decisions in 2015. This estimated that between 1990 and 2015 deaths from PAE in The Netherlands rose from 1.7 to 4.5% of all deaths. It is not surprising that such deaths should increase in number following legalisation in 2001. However, the 4.5% figure is higher than the proportion of deaths from this source (3.75%) reported by the RTEs for 2015 on the basis of the number of cases notified to them. But it is consistent with the data on euthanasia deaths recorded by Statistics Netherlands for 2015. So much for the arithmetic. There remains the question: if it is the case that there are more deaths from PAS/PAE than the RTEs are recording, why are these cases not being notified by the doctors concerned to the RTEs? According to the quinquennial report on 2010, ‘in the unreported cases the drugs used were hardly ever neuromuscular relaxants or barbiturates’ (the drugs most commonly used in euthanasia) ‘and the most appropriate term according to the physician was never “euthanasia” or “assisted suicide”’. So, it may be asked, why were they classified as euthanasia in the quinquennial reports? The 2010 report has this to say: These characteristics of unreported cases have led some to argue that cases of euthanasia in which opioids were used should not be included in the euthanasia rate. Excluding unreported cases would make for a reporting rate of about 100% both in 2005 and 2010. However, use of opioids was only classified as euthanasia when physicians affirmed that death was caused by administering this drug with the intention to end life. Hastening of death by administration of opioids in these cases cannot be ruled out.It is difficult to know what to make of this situation. Perhaps the doctors concerned in the additional cases were administering intensified symptom relief with an expectation that death would certainly or probably be hastened as a result. That might explain the use of opioids rather than barbiturates and the failure to report the acts as euthanasia, but it would not explain their description by respondents as acts intended to end patients’ lives. Certainly there seems to be a grey area as regards the actual incidence of euthanasia in The Netherlands. The review process As observed above, the 2001 Act placed responsibility on the RTEs for assessing notifications of euthanasia and assisted suicide and deciding whether the requirements of the law had been observed. The committees are, however, doing more than deciding whether or not the law has been broken. They are also determining the precise boundaries of the law by ruling on whether, and in what circumstances, certain acts or situations fall within the law’s ‘due care’ criteria. The RTEs were clear about this role from the outset. In their first annual report following legalisation, they stated that ‘the committees do have some latitude interpreting the due care criteria’ and that ‘the question of how the criteria are to be applied in specific cases is left up to them’.7 This role is perhaps inevitable given the nature of the criteria as laid down in the Act. Some of these are fairly clear-cut- for example, that there should have been an independent second-opinion and that the patient should have been informed of his or her diagnosis and prognosis. But other, important, criteria—such as the need for a request to be voluntary and well-considered or for the patient’s suffering to be lasting and unbearable and with no prospect of improvement—offer considerable scope for subjective judgement. Given the open nature of the criteria as laid down in the Act, the RTEs seem to have found themselves obliged, in reaching their judgements in individual cases, to formulate their own guidelines for assessing whether acts of euthanasia or assisted suicide comply with the law. It might be said, therefore, that the committees are developing the law as well as deciding who has and who has not broken it. In 2015 the RTEs published a Code of Practice to outline ‘the issues and considerations that the committees regard as relevant in connection with the statutory due care criteria for euthanasia’.8 The Code makes clear that only a minority of reports submitted by doctors are considered by the RTEs at their meetings. The committees operate a form of triage, in which reports are classified as ‘straightforward’ if the committee secretary ‘can establish that the information provided is so comprehensive and the likelihood that the physician has complied with the statutory due care criteria is so great that the committee will be able to review the notification digitally’.9 These cases accounted for 80% of those notified in 2016: only a minority which raise questions are considered at committee meetings. The Code also draws a distinction between individual ‘due care’ criteria and the levels of scrutiny given to them. It states that, in regard to some of the criteria (whether the deceased patient had been informed of his or her situation and prognosis, whether another independent physician had been consulted and whether the patient’s life had been terminated with due medical care), ‘it must be clear that the physician complied with the due care criteria’. However, in regard to others (whether the request was voluntary and well-considered, whether the patient’s suffering was unbearable and with no prospect of improvement and that there was no reasonable alternative to euthanasia), the physician must be able to ‘plausibly argue that, given the circumstances of the case, he was reasonably able to conclude’ that these tests had been met.10 The committees’ 2016 report suggests that this process ‘would be described by Dutch lawyers as ‘limited review’ or a test of reasonableness’.9 The committees’ latest report explains that this means that ‘the RTEs do not carry out a full review of compliance with the due care criteria and therefore do not re-examine the same issues as the physician who made the original decision. The RTEs cannot do this, as the patient is no longer alive: these are the issues that the independent physician focuses on’.9 This is an important admission. In effect, the committees are acknowledging that in respect of three key criteria they are not examining whether the notifying doctor’s action was correct, that they are relying on the ‘second opinion’ doctor to perform that function and that their role in respect of these key criteria is to assess whether, based on the information given to them and the plausibility of the submitting doctor’s arguments, the decision to provide PAS or PAE seemed reasonable. A recently published study11 of cases where the RTEs had ruled that the ‘due care’ criteria had not been met observed that ‘the majority of cases did not meet the due care criteria for procedural or technical reasons’ and that ‘even when the substantive criteria were at issue, the RTEs' focus was generally not on whether the physician had made a “correct” judgement but on whether the physician followed a thorough process (i.e. whether physicians should have consulted specialists or evaluated the patient further, but not whether the patient should have received Euthanasia or Assisted Suicide [EAS])’. The study concluded: Evaluating patients’ EAS requests requires complicated judgements in implementing criteria that are intentionally open-ended, evolving and fraught with acknowledged interpretive difficulties. Our review suggests that the Dutch review system’s primary mode of handling this difficulty is a trust-based system that focuses on the procedural thoroughness and professionalism of physicians.If this is the case, the question arises: to what extent might the SCEN system provide assurance as to the soundness of the decisions which doctors providing PAE/PAS are making? According to the authors of the above study, their examination of the role of the SCEN doctors in cases judged not to have met the ‘due care’ criteria did not provide such assurance. They write: We anticipated that Due Care Not Met (DCNM) cases would generally involve EAS physicians going against the SCEN consultants’ recommendations. Indeed, we did find two cases of this, but in most cases the consultants either agreed with the EAS physician or played a more active role in facilitating the EAS.Does the nature of the RTE oversight system affect the behaviour of doctors considering requests for euthanasia? This is impossible to say with any certainty. However, in their 2013 report the committees noted that ‘there appears to be an increase in willingness among physicians to carry out euthanasia and assisted suicide in cases involving a mental disorder’. They commented that ‘this may be explained by physicians’ awareness of the fact that in 2011 and 2012 the review committees found 27 cases’ (i.e. all the mental disorder cases notified in those 2 years) ‘to have been handled with due care’. They added that ‘physicians’ views on the regulatory standards have clearly changed’.12 Doctor–patient relationships A Westminster parliamentary committee was told, in the course of a visit to The Netherlands in 2004, that ‘there is an absolute condition that it [euthanasia] can only be done by the treating physician. It cannot be any other physician’ and that ‘what we insist on is that it only takes place within a meaningful medical relationship. That is an absolute condition’.13 This highlights what has been one of the features of the Dutch system—that voluntary euthanasia and assisted suicide have generally been provided by GPs to patients on their registers rather than by referral doctors who step in when a patient’s regular doctor declines to participate. There are signs, however, that the requirement of a long-term doctor–patient relationship is now seen as a less absolute condition than was once the case. According to the RTEs’ 2016 report 8% of notifications (1 in 12) in that year came from doctors connected with a body known as the Levenseinde (End of Life) Clinic. The SLK (to use the Dutch acronym for this body) considers requests that have been turned down or referred by a patient’s regular doctor. It began its operations in 2012. As Table 3 below shows, the number of requests for PAS/PAE which were approved by doctors connected with the SLK has risen steeply since then. Table 3 Requests for PAS/PAE approved by SLK 2012–16 2012  32  2013  107  2014  237  2015  366  2016  487  2012  32  2013  107  2014  237  2015  366  2016  487  View Large In their 2013 report the RTEs observed that ‘the handover of the patient from the attending physician to the SLK physician and the relatively short duration of the SLK physician–patient relationship are by definition points of concern’ and they stated that it had been decided ‘to consider all SLK notifications as non-straightforward cases to be discussed at the monthly committee meetings’.12 However, by the time of their report on 2015, the RTEs had decided that notifications from doctors connected with the SLK could be classed as straightforward ‘if the experienced secretary/lawyer who classifies the notifications views them as compliant with the due care criteria’. In the same report the committees referred to a ‘relatively large number of notifications of euthanasia for mental health conditions and dementia’ in which SLK physicians had been involved.14 Their 2016 report stated: Many of the notifications of cases involving a psychiatric disorder came from an SLK physician: 37 out of 60 notifications (almost 62%). Out of all the notifications of cases in which the patient’s suffering was caused by a form of dementia, 46 (nearly 33%) came from an SLK physician.9 The report noted that SLK-connected physicians were involved in PAE/PAS in 66 (27%) out of 244 cases involving another controversial group—people with what the RTE reports call ‘multiple geriatric syndromes’. In other words, although SLK involvement overall in PAE/PAS in 2016 was only 8%, its involvement in the contentious areas of mental disorder, dementia and multiple geriatric ailments was significantly greater. The RTEs commented in their 2016 report that ‘the records show that physicians may find these cases complex or that physicians refer patients to the SLK for reasons of principle. Some physicians will only perform euthanasia if the patient has a terminal condition’. Discussion The outturn of the 2001 Act has begun to attract some controversy in The Netherlands. In February 2017 a documentary was screened on Dutch television which followed three cases of euthanasia up to the point of death. One concerned a woman in her 60s with advanced dementia, the second a man with a serious condition of obsessive compulsive disorder and the third a 100-year-old woman who did not wish to go on living. It was a moving—and in places distressing—programme and it is not surprising that the committees referred to it in the introduction to their next report, observing that it had ‘played a major role in the continuing public debate on euthanasia’.9 They noted the continuing year-on-year increases in all cases of PAE/PAS, including in cases involving mental health disorder, dementia and multiple geriatric conditions. They wrote in their report: These increases are not easily explained. Has the willingness to report increased among physicians? Are physicians more inclined to grant patients' requests for euthanasia? Are patients more resolute when discussing their wish for euthanasia with their physician? Is the—generally positive—fact that people in the Netherlands are living longer a possible explanation for the rise in the number of notifications? Or is it also related to the demographic composition of the Dutch population? These are all fair questions, but there is another which is conspicuous by its absence-namely, could the RTEs themselves be part of the explanation? That The Netherlands has created a post-event review system is commendable. But all audit activity, and especially where there are serious risks and where the consequences of error are grave, needs to pose serious and robust challenge if it is to be effective. It is open to question whether the RTEs as they stand are meeting this requirement. Their system of ‘limited review’ for key criteria and their apparent reliance on the SCEN network to act as a long-stop at the pre-event stage are not easy to reconcile with the concept of rigorous scrutiny. It is difficult to avoid the impression when reading the RTEs’ anonymised case summaries that there is a reluctance to rule notifications out of order. The authors of the study of DCNM cases seem to have come to a similar conclusion. They write: If the review system sets strict limits and provides scrupulous monitoring, then the extremely low rates of non-compliance would indicate a major achievement in preventing abuses and errors. An alternative explanation is that the rates are low because the system is not designed to, or cannot, provide such strict oversight. By the time the committees see a request the patient is dead. But that surely does not mean that they should limit their examination to issues of process—what their 2016 report refers to as ‘limited review’. It is certainly necessary that integrity of process should be confirmed. However, it is conceivable that decisions to provide PAE or PAS might well follow the processes correctly but are nonetheless misguided. As observed above, while some of the criteria laid down in the 2001 Act—such as the enlistment of an independent second opinion or the communication to a patient of his or her diagnosis and prognosis—are relatively straightforward and amenable to a tick-box approach, other—crucial—ones, including whether a request is voluntary and well-considered and whether there is unbearable suffering and no reasonable alternative to euthanasia, call for the exercise of judgement. An effective system of case review must surely re-examine those judgements as well as the processes that led up to them. There is perhaps another consideration to be borne in mind in looking at the effectiveness of the review process. All audit, if it is to be effective, calls for a sceptical, detached and impartial mindset. In financial or business audit and in other areas of activity where there is social consensus over the underlying aims and values, finding auditors with these characteristics does not present a problem. Euthanasia, on the other hand, is a controversial and potentially divisive issue in which there are strongly held views on both sides of the political debate. This raises the question: how are impartial and objective auditors to be found who are sufficiently unencumbered by ‘baggage’ (on both sides of the debate) to review reported acts of euthanasia dispassionately and with an appropriate degree of scepticism? It would be interesting to know how many members of the RTEs have activities or backgrounds with the potential for a conflict of interest with objective and challenging audit. However, it is not just the RTEs which could be a factor of the current situation. The authors of the study referred to above comment that ‘the culture of trust in the authorities that regulate the EAS system is likely supported by the awareness that no doctor under the current law has suffered any legal consequences for reporting cases that do not conform to the due care criteria’.11 Human nature being what it is, deterrence is an important factor in legal compliance. It is undeniable that the incidence of euthanasia in The Netherlands is high and rising year on year. According to a November 2017 article in the UK newspaper The Guardian15 the annual number of such deaths is set to exceed 7000 and the SLK is looking to recruit more doctors and nurses to cope with the increasing demand. If there was any taboo, the SLK’s Director, Steven Pleiter, is quoted as saying, ‘it has gone. There is a generation coming up, the post-war generation, which is now coming to the life stage in which they will die, and this generation has a far more clear and expressed opinion about how to shape their own life end. I expect far more growth in the years to come. There can be little doubt that the post-war generation is more demanding than its predecessors and this is almost certainly a factor of the growth of demand for euthanasia, though there are other, equally important, factors, such as changes in the pattern of dying, where longer life-spans are not always accompanied by extended health and capability, and the growth of individualism. However, the question arises: is recruiting more staff to satisfy demand rather than getting to the roots of what is going on the most appropriate way to deal with this situation? As Professor Theo Boer, a member of the RTEs until 2014, is quoted in the article as saying: I know lots of people who now say that there is only one way they want to die and that’s through injection. It’s getting too normal. Conclusion There are some features of the Dutch 2001 law that are commendable. The very title of the law—Termination of Life on Request and Assisted Suicide Act—is admirably clear: the label matches exactly the contents of the tin. This cannot be said for the euphemistic phraseology and linguistic contortions—Death with Dignity, End of Life Options, Medical Aid in Dying—which characterize similar ending-life laws in certain other jurisdictions. The Dutch law also appears to recognize the difficulty of setting artificial parameters, such as terminal illness, for legalized euthanasia or assisted suicide. If the relief of suffering is to be the touchstone for ending or providing the means for ending other people’s lives, it is difficult to see the logic in providing such help to persons who are expected to die of natural causes in the near future but withholding it from others with chronic conditions who may have years of discomfort ahead of them. A key difference between the Dutch 2001 law and similar laws in a handful of US States is that it allows PAE as well as PAS. As observed above, the overwhelming majority of deaths under the Dutch law in 2016 were of PAE rather than PAS. Canada, which legalized both PAS and PAE in 2016, seems to be heading in the same direction: in the first year of that law’s operation almost all of the 1982 deaths reported deaths were the result of PAE. Why should this be so? Perhaps, with its direct involvement of a doctor in administering injections of lethal drugs and its placing of the patient in the position of passive recipient rather than active ingestor, PAE is misperceived as having attributes of medical care. Whatever the reasons, it is indisputable that, where PAE is legalized alongside PAS, it has the effect of driving out the latter, and of driving up the numbers of hastened deaths dramatically. Another commendable feature of the Dutch law is its provision for post-event scrutiny of acts of PAE and PAS. Such scrutiny is necessary both to deter malpractice and laxity and to provide transparency. Post-event audit arrangements have been conspicuous by their absence from recent attempts to change the law in Britain. However, there are some serious questions over whether the Dutch review system is providing sufficiently robust oversight of the practice of legalized PAE and PAS. Does the Dutch experience have any lessons for Britain, where there are continuing—though hitherto unsuccessful—attempts to legalize what is being called ‘assisted dying’? Campaigners for legal change here are inclined to dissociate themselves from Dutch arrangements and to assure Parliament and the public that their ambitions are limited to legalisation solely of PAS for terminally ill people on the model of the US State of Oregon. However, the question arises: for how long would artificial restrictions such as terminal illness, 6-month prognosis and self-administration of lethal drugs remain in place in the event that an Oregon-style law were to be enacted in the UK? Would the development of any such law follow the pattern of a sparsely populated State 5000 miles away on the West Coast of the United States- where, it should be noted, there are pressures to extend the existing PAS law? Or would it follow that of another densely populated and urbanized country just across the North Sea with whom we have had close links for centuries? It is impossible to say, but it cannot be safely assumed that the Dutch experience has no warnings to offer on how legalisation of ‘assisted dying’, if that were ever to take place, could develop in the UK. Conflict of interest statement The authors have no potential conflicts of interest. References 1 Termination of Life on Request and Assisted Suicide (Review Procedures) Act, April 2002. 2 Regional Euthanasia Review Committees: 2006 Annual Report. www.euthanasiecommissie.nl 3 Second Interim Report on Medical Assistance in Dying in Canada. https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-sep-2017.html 4 HL Paper 86-II, House of Lords (Session 2004–05), p. 481. 5 Onwuteaka-Philipsen BD, Brinkman-Stoppelenburg A, Penning C, et al.  . Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional study. Lancet  2012; http://dx.doi.org/10.1016/S0140-6736(12)61034-4. 6 van der Heide A, van Delden JJM, Onwuteaka-Philipsen BD. End of Life Decisions in the Netherlands over 25 years. N Engl J Med  2017; 377: 492– 4. DOI:10.1056/NEJMc1705630. Google Scholar CrossRef Search ADS PubMed  7 Regional Euthanasia Review Committees: 2002 Annual Report. www.euthanasiecommissie.nl 8 Regional Euthanasia Review Committees Code of Practice, The Hague, April 2015, p. 5. 9 RTEs Report for 2002. 10 RTEs Code of Practice, April 2015, p. 5. 11 Miller DG, Kim SYH. Euthanasia and assisted suicide not meeting due care criteria in the Netherlands: a qualitative review of review committee judgements. Br Med J  2017; 7: bmjopen.bmj.com/content/7/10/e017628. 12 RTEs Report for 2002. 13 House of Lords Report 86-II (Session 2004-05), p. 481. 14 RTEs Report for 2002. 15 ‘Any taboo has gone’, The Guardian, 9 November 2017. https://www.theguardian.com/world/2017/nov/09/any-taboo-has-gone-netherlands-sees-rise-in-demand-for-euthanasia © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png British Medical Bulletin Oxford University Press

Death on demand? An analysis of physician-administered euthanasia in The Netherlands

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Oxford University Press
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© The Author(s) 2018. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com
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0007-1420
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1471-8391
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10.1093/bmb/ldy003
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Abstract

Abstract Background Physician-administered euthanasia (PAE) was legalized, along with physician-assisted suicide (PAS), in The Netherlands in 2001. Sources of data Annual reports of the Dutch Regional Euthanasia Review Committees, the committees’ 2015 published Code of Practice and research studies Areas of agreement There is a general openness about the practice of PAE/PAS in The Netherlands and an avoidance of misleading euphemisms. The 2001 law also includes arrangements for post-event review of PAE/PAS decisions. Areas of controversy Rising numbers of annually reported deaths from PAE and uncertainty over actual numbers. Movement away from the principle that euthanasia must take place within an established doctor–patient relationship. Increasing extension of the 2001 law to people with mental health conditions, dementia and multiple co-morbidities. Nature of the post-event scrutiny applied to reported cases. Growing points The predominance of PAE over PAS where both are legalized raises questions over how these two acts are perceived and whether there are implications for such laws. Areas for timely research Are the criteria for PAE/PAS in the 2001 law appropriate for a law of this nature? What should be the respective roles of the second-opinion doctors and the review committees? euthanasia, suffering, due care, review, well-considered Introduction Physician-administered euthanasia (PAE) describes a situation where a doctor administers a lethal dosage of drugs to a patient, at that patient’s request, in order to bring about his or her death. In most countries such acts are illegal and considered contrary to the ethics of medical practice. In recent years, however, PAE has been legalized in four jurisdictions—The Netherlands (2001), Belgium (2002), Luxembourg (2009) and Canada (2016). In The Netherlands and Canada PAE is one of two legalized acts, the other being physician-assisted suicide (PAS), where a doctor supplies lethal drugs for self-administration by the patient rather than administers them. This article focuses on The Netherlands, where PAE has been legalized for longest and where there is most evidence of outturn. It draws on the fifteen annual reports published by the Dutch Regional Euthanasia Review Committees (see below), on a Code of Practice published by them in 2015, and on studies of the subject including the two most recent of a series of quinquennial surveys of end-of-life decisions in The Netherlands. It addresses both PAE and PAS, though it will be clear that in The Netherlands almost all such deaths (96% in 2016) consist of PAE. The 2001 Act In 2001, The Netherlands passed a law1 creating an exception to the Criminal Code. Under the Code ending another person’s life or assisting a suicide was, and remains, a criminal offence. The 2001 Act created an exception whereby the Code would not apply if a physician had terminated the life, or assisted the suicide, of a patient on request and if certain ‘due care’ criteria had been observed. The 2001 Act formalized what had been a growing practice in The Netherlands over the previous 20 years, during which doctors who had administered voluntary euthanasia or assisted a patient’s suicide had been able to invoke a ‘defence of necessity’—meaning that they had been able to argue as a defence that ending or helping to end a patient’s life had been necessary to relieve that patient’s suffering. Article 2 is the central feature of the 2001 Act. It sets out the ‘due care’ criteria the observance of which render an act of voluntary euthanasia or assisted suicide immune from prosecution. It states that the physician must be satisfied that the patient’s request is ‘voluntary and well-considered’, that his or her suffering is ‘lasting and unbearable’ and that there is ‘no other reasonable solution’. The physician must inform the patient about his or her condition and prognosis and consult at least one other, independent doctor. If the physician considers these conditions to have been met, he or she may administer voluntary euthanasia to the patient or assist his or her suicide by supplying a lethal dosage of drugs. The 2001 Act does not specifically require that the requesting patient should have mental capacity: the presence of capacity is seen as an element of a well-considered request. Nor does it require that the patient should have been diagnosed as having a terminal illness. The two principal criteria are a voluntary and well-considered request and lasting and unbearable suffering. Under the Act voluntary euthanasia and assisted suicide are available, subject to observance of the ‘due care’ criteria, to adults; to persons aged between the ages of 16 and 18 if the parents ‘have been involved in the decision process’; and to minors over the age of 12 who have parental agreement. The Act also provides that, if a patient aged 16 or over ‘is no longer capable of expressing his will but prior to reaching this condition was deemed to have a reasonable understanding of his interests and has made a written statement containing a request for termination of life, the physician may carry out this request’. The Act charged Regional Euthanasia Review Committees with examining notifications of voluntary euthanasia or assisted suicide from Dutch doctors and adjudicating on whether the requirements of ‘due care’ had been observed. There are five such regional committees and the 2001 Act requires them collectively to issue annual reports describing their findings. In fact, the committees pre-dated the 2001 Act. They had existed since 1998 in order to review reported cases of voluntary euthanasia or assisted suicide under the ‘defence of necessity’ regime and to offer advice on them to the Public Prosecution Service. Under the 2001 Act this role changed. In the words of the committees’ 2006 report, ‘the review committees, which previously had a purely advisory role, now assess whether the physician has fulfilled the due care criteria. They now refer notifications to the Public Prosecution Service and the Health Care Inspectorate only if the due care criteria have not been fulfilled’.2 Each committee is composed of a lawyer, who is also the chair, a physician and an ethicist (plus deputies for each) and a secretary. If a physician assists a suicide or administers voluntary euthanasia, he or she must notify the municipal pathologist, who reports the death to the relevant review committee and submits the report of the physician who performed the act, the report of a second (independent) physician and, if appropriate, the patient’s advance directive requesting PAE or PAS. Where necessary, the committee may request the physician to supplement his or her report either orally or in writing. The data The committees, which are referred to hereafter by their Dutch acronym RTEs, have presented a consolidated report for each calendar year from 2002 onwards. These show the number of notifications of voluntary euthanasia and assisted suicide submitted to them and address issues which have arisen during the year in considering those notifications. Numbers Figure 1 shows the number of cases notified to the RTEs in each year from 2002 to 2016. Fig. 1 View largeDownload slide Notifications of PAE/PAS 2002–16. Fig. 1 View largeDownload slide Notifications of PAE/PAS 2002–16. Since the 2001 Act was passed the annual number of reported deaths from PAE and PAS has risen from 1882 (2002) to 6091 (2016). The 5 years immediately following the passing of the Act saw a more or less level trend in the number of reported cases and it was claimed by some that the warnings of opponents of legalisation had been shown to be groundless. After 2006, however, the numbers began to rise and since 2009 have increased significantly year by year. There were more than three times as many deaths from PAE or PAS reported in 2016 as in 2006. Out of a total of 49 287 deaths from PAE or PAS notified to them over the 15-year period from 2002 to 2016 the RTEs have ruled that only 89 (less than a quarter of 1%) failed to meet the ‘due care’ requirements of the 2001 Act. In 2016 just 10 cases out of 6091 (<0.2%) were ruled out of order. In that year 1 in 25 of all deaths occurring in The Netherlands was the result of either PAE or PAS. This death rate is the equivalent of some 21 000 deaths annually in England and Wales. In 2016 only 3.5% of deaths under the 2001 Act were from PAS. Another 0.3% were deaths resulting from a combination of PAS and PAE. In 96% of cases death was the result of the administration of lethal drugs by a doctor to a patient. This predominance of PAE over PAS where both are legally available does not appear to be a specifically Dutch phenomenon. Initial reports3 on the outturn of Canada’s 2016 ‘Medical Aid In Dying’ law indicate a similar pattern. Illnesses Of the 6091 reported cases of PAE or PAS in 2016 83% involved terminal or other serious physiological illnesses, including cancer, disorders of the nervous system, cardiovascular disease and lung disease. Seventeen percent (1 in 6) of deaths were of people with other conditions, including mental illness, dementia and multiple geriatric symptoms. Deaths where euthanasia was approved on the basis of mental illness or dementia have been rising in recent years, as Table 1 shows. Table 1 Deaths from PAE/PAS where mental health conditions or dementia formed the basis of suffering Year  Mental health  Dementia  Total  2010    25  25  2011  13  49  62  2012  14  42  56  2013  42  97  139  2014  41  81  122  2015  56  109  165  2016  60  141  201  Year  Mental health  Dementia  Total  2010    25  25  2011  13  49  62  2012  14  42  56  2013  42  97  139  2014  41  81  122  2015  56  109  165  2016  60  141  201  The SCEN network In most cases doctors who consider requests for euthanasia or assisted suicide turn to Support and Consultation for Euthanasia in The Netherlands (SCEN) doctors for the required second, independent, opinion required by the law. SCEN consists of a network of doctors who have been trained to serve as independent consulting physicians to ensure compliance with the law and to support the doctors making the decisions. A Westminster parliamentary select committee visiting The Netherlands in 2004 was told by a Dutch SCEN physician that ‘because of our training, but also because of our experience and the countrywide availability of SCEN physicians, this guarantees a uniform and independent view and…control of the procedure’. He added that, ‘after we have carried out our consultation, we give the physician a written report in which we state whether or not the procedure has been completed’. The committee was also told that, if euthanasia is carried out, the SCEN report is sent to the appropriate review committee ‘which will give the final judgement’.4 Issues Numbers Establishing the incidence of PAE/PAS in The Netherlands is not so straightforward as might appear at first sight. As Figure 1 shows, the RTEs reported that in 2015 they had received 5516 notifications of euthanasia or assisted suicide. However, according to Statistics Netherlands, there were 6822 deaths from these causes in that year. Nor is this disagreement of data a single-year phenomenon. In 2010 the RTEs recorded 3136 notifications of PAE or PAS, whereas Statistics Netherlands reported 4051 cases. The detailed figures are shown in Table 2. Table 2 Incidence of PAS/PAE in The Netherlands in 2010 and 2015 as recorded by RTEs and Statistics Netherlands   PAE  PAS  PAS + PAE  Total  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  2010  2910  3859  182  192  44  N/A  3136  4051  2015  5277  6672  208  150  31  N/A  5516  6822    PAE  PAS  PAS + PAE  Total  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  RTEs  Stats NL  2010  2910  3859  182  192  44  N/A  3136  4051  2015  5277  6672  208  150  31  N/A  5516  6822  View Large How are these significant differences to be explained? The RTEs record the number of cases of PAE or PAS which have been notified to them by doctors. Statistics Netherlands, on the other hand, reports estimates based on quinquennial research studies into end-of-life decision-making. These studies have been conducted every 5 years since 1990. They are based on random samples, taken from the central death registry of Statistics Netherlands, of persons whose deaths were registered in the period August–November of the year concerned and on anonymous responses from doctors as to whether an end-of-life decision was involved and, if so, what was its nature- for example, whether it had comprised withdrawal of life-sustaining treatment or intensified alleviation of symptoms with a concomitant risk of hastened death or had involved PAE or PAS. The 1990 baseline for these reports pre-dated legalisation of this last category of actions. The researchers’ 2010 report stated that ‘the absolute number of cases of euthanasia or PAS in 2010 was about 4050’ and that ‘in 2010, 3136 (77%) cases of euthanasia or PAS were reported to euthanasia review committees in the Netherlands’.5 As Table 2 shows, the 4050 figure matches the data on deaths from PAS/PAE recorded by Statistics Netherlands for 2010. A similar conflict of data is apparent when we come to the next quinquennial report,6 which was published in 2017 and related to end-of-life decisions in 2015. This estimated that between 1990 and 2015 deaths from PAE in The Netherlands rose from 1.7 to 4.5% of all deaths. It is not surprising that such deaths should increase in number following legalisation in 2001. However, the 4.5% figure is higher than the proportion of deaths from this source (3.75%) reported by the RTEs for 2015 on the basis of the number of cases notified to them. But it is consistent with the data on euthanasia deaths recorded by Statistics Netherlands for 2015. So much for the arithmetic. There remains the question: if it is the case that there are more deaths from PAS/PAE than the RTEs are recording, why are these cases not being notified by the doctors concerned to the RTEs? According to the quinquennial report on 2010, ‘in the unreported cases the drugs used were hardly ever neuromuscular relaxants or barbiturates’ (the drugs most commonly used in euthanasia) ‘and the most appropriate term according to the physician was never “euthanasia” or “assisted suicide”’. So, it may be asked, why were they classified as euthanasia in the quinquennial reports? The 2010 report has this to say: These characteristics of unreported cases have led some to argue that cases of euthanasia in which opioids were used should not be included in the euthanasia rate. Excluding unreported cases would make for a reporting rate of about 100% both in 2005 and 2010. However, use of opioids was only classified as euthanasia when physicians affirmed that death was caused by administering this drug with the intention to end life. Hastening of death by administration of opioids in these cases cannot be ruled out.It is difficult to know what to make of this situation. Perhaps the doctors concerned in the additional cases were administering intensified symptom relief with an expectation that death would certainly or probably be hastened as a result. That might explain the use of opioids rather than barbiturates and the failure to report the acts as euthanasia, but it would not explain their description by respondents as acts intended to end patients’ lives. Certainly there seems to be a grey area as regards the actual incidence of euthanasia in The Netherlands. The review process As observed above, the 2001 Act placed responsibility on the RTEs for assessing notifications of euthanasia and assisted suicide and deciding whether the requirements of the law had been observed. The committees are, however, doing more than deciding whether or not the law has been broken. They are also determining the precise boundaries of the law by ruling on whether, and in what circumstances, certain acts or situations fall within the law’s ‘due care’ criteria. The RTEs were clear about this role from the outset. In their first annual report following legalisation, they stated that ‘the committees do have some latitude interpreting the due care criteria’ and that ‘the question of how the criteria are to be applied in specific cases is left up to them’.7 This role is perhaps inevitable given the nature of the criteria as laid down in the Act. Some of these are fairly clear-cut- for example, that there should have been an independent second-opinion and that the patient should have been informed of his or her diagnosis and prognosis. But other, important, criteria—such as the need for a request to be voluntary and well-considered or for the patient’s suffering to be lasting and unbearable and with no prospect of improvement—offer considerable scope for subjective judgement. Given the open nature of the criteria as laid down in the Act, the RTEs seem to have found themselves obliged, in reaching their judgements in individual cases, to formulate their own guidelines for assessing whether acts of euthanasia or assisted suicide comply with the law. It might be said, therefore, that the committees are developing the law as well as deciding who has and who has not broken it. In 2015 the RTEs published a Code of Practice to outline ‘the issues and considerations that the committees regard as relevant in connection with the statutory due care criteria for euthanasia’.8 The Code makes clear that only a minority of reports submitted by doctors are considered by the RTEs at their meetings. The committees operate a form of triage, in which reports are classified as ‘straightforward’ if the committee secretary ‘can establish that the information provided is so comprehensive and the likelihood that the physician has complied with the statutory due care criteria is so great that the committee will be able to review the notification digitally’.9 These cases accounted for 80% of those notified in 2016: only a minority which raise questions are considered at committee meetings. The Code also draws a distinction between individual ‘due care’ criteria and the levels of scrutiny given to them. It states that, in regard to some of the criteria (whether the deceased patient had been informed of his or her situation and prognosis, whether another independent physician had been consulted and whether the patient’s life had been terminated with due medical care), ‘it must be clear that the physician complied with the due care criteria’. However, in regard to others (whether the request was voluntary and well-considered, whether the patient’s suffering was unbearable and with no prospect of improvement and that there was no reasonable alternative to euthanasia), the physician must be able to ‘plausibly argue that, given the circumstances of the case, he was reasonably able to conclude’ that these tests had been met.10 The committees’ 2016 report suggests that this process ‘would be described by Dutch lawyers as ‘limited review’ or a test of reasonableness’.9 The committees’ latest report explains that this means that ‘the RTEs do not carry out a full review of compliance with the due care criteria and therefore do not re-examine the same issues as the physician who made the original decision. The RTEs cannot do this, as the patient is no longer alive: these are the issues that the independent physician focuses on’.9 This is an important admission. In effect, the committees are acknowledging that in respect of three key criteria they are not examining whether the notifying doctor’s action was correct, that they are relying on the ‘second opinion’ doctor to perform that function and that their role in respect of these key criteria is to assess whether, based on the information given to them and the plausibility of the submitting doctor’s arguments, the decision to provide PAS or PAE seemed reasonable. A recently published study11 of cases where the RTEs had ruled that the ‘due care’ criteria had not been met observed that ‘the majority of cases did not meet the due care criteria for procedural or technical reasons’ and that ‘even when the substantive criteria were at issue, the RTEs' focus was generally not on whether the physician had made a “correct” judgement but on whether the physician followed a thorough process (i.e. whether physicians should have consulted specialists or evaluated the patient further, but not whether the patient should have received Euthanasia or Assisted Suicide [EAS])’. The study concluded: Evaluating patients’ EAS requests requires complicated judgements in implementing criteria that are intentionally open-ended, evolving and fraught with acknowledged interpretive difficulties. Our review suggests that the Dutch review system’s primary mode of handling this difficulty is a trust-based system that focuses on the procedural thoroughness and professionalism of physicians.If this is the case, the question arises: to what extent might the SCEN system provide assurance as to the soundness of the decisions which doctors providing PAE/PAS are making? According to the authors of the above study, their examination of the role of the SCEN doctors in cases judged not to have met the ‘due care’ criteria did not provide such assurance. They write: We anticipated that Due Care Not Met (DCNM) cases would generally involve EAS physicians going against the SCEN consultants’ recommendations. Indeed, we did find two cases of this, but in most cases the consultants either agreed with the EAS physician or played a more active role in facilitating the EAS.Does the nature of the RTE oversight system affect the behaviour of doctors considering requests for euthanasia? This is impossible to say with any certainty. However, in their 2013 report the committees noted that ‘there appears to be an increase in willingness among physicians to carry out euthanasia and assisted suicide in cases involving a mental disorder’. They commented that ‘this may be explained by physicians’ awareness of the fact that in 2011 and 2012 the review committees found 27 cases’ (i.e. all the mental disorder cases notified in those 2 years) ‘to have been handled with due care’. They added that ‘physicians’ views on the regulatory standards have clearly changed’.12 Doctor–patient relationships A Westminster parliamentary committee was told, in the course of a visit to The Netherlands in 2004, that ‘there is an absolute condition that it [euthanasia] can only be done by the treating physician. It cannot be any other physician’ and that ‘what we insist on is that it only takes place within a meaningful medical relationship. That is an absolute condition’.13 This highlights what has been one of the features of the Dutch system—that voluntary euthanasia and assisted suicide have generally been provided by GPs to patients on their registers rather than by referral doctors who step in when a patient’s regular doctor declines to participate. There are signs, however, that the requirement of a long-term doctor–patient relationship is now seen as a less absolute condition than was once the case. According to the RTEs’ 2016 report 8% of notifications (1 in 12) in that year came from doctors connected with a body known as the Levenseinde (End of Life) Clinic. The SLK (to use the Dutch acronym for this body) considers requests that have been turned down or referred by a patient’s regular doctor. It began its operations in 2012. As Table 3 below shows, the number of requests for PAS/PAE which were approved by doctors connected with the SLK has risen steeply since then. Table 3 Requests for PAS/PAE approved by SLK 2012–16 2012  32  2013  107  2014  237  2015  366  2016  487  2012  32  2013  107  2014  237  2015  366  2016  487  View Large In their 2013 report the RTEs observed that ‘the handover of the patient from the attending physician to the SLK physician and the relatively short duration of the SLK physician–patient relationship are by definition points of concern’ and they stated that it had been decided ‘to consider all SLK notifications as non-straightforward cases to be discussed at the monthly committee meetings’.12 However, by the time of their report on 2015, the RTEs had decided that notifications from doctors connected with the SLK could be classed as straightforward ‘if the experienced secretary/lawyer who classifies the notifications views them as compliant with the due care criteria’. In the same report the committees referred to a ‘relatively large number of notifications of euthanasia for mental health conditions and dementia’ in which SLK physicians had been involved.14 Their 2016 report stated: Many of the notifications of cases involving a psychiatric disorder came from an SLK physician: 37 out of 60 notifications (almost 62%). Out of all the notifications of cases in which the patient’s suffering was caused by a form of dementia, 46 (nearly 33%) came from an SLK physician.9 The report noted that SLK-connected physicians were involved in PAE/PAS in 66 (27%) out of 244 cases involving another controversial group—people with what the RTE reports call ‘multiple geriatric syndromes’. In other words, although SLK involvement overall in PAE/PAS in 2016 was only 8%, its involvement in the contentious areas of mental disorder, dementia and multiple geriatric ailments was significantly greater. The RTEs commented in their 2016 report that ‘the records show that physicians may find these cases complex or that physicians refer patients to the SLK for reasons of principle. Some physicians will only perform euthanasia if the patient has a terminal condition’. Discussion The outturn of the 2001 Act has begun to attract some controversy in The Netherlands. In February 2017 a documentary was screened on Dutch television which followed three cases of euthanasia up to the point of death. One concerned a woman in her 60s with advanced dementia, the second a man with a serious condition of obsessive compulsive disorder and the third a 100-year-old woman who did not wish to go on living. It was a moving—and in places distressing—programme and it is not surprising that the committees referred to it in the introduction to their next report, observing that it had ‘played a major role in the continuing public debate on euthanasia’.9 They noted the continuing year-on-year increases in all cases of PAE/PAS, including in cases involving mental health disorder, dementia and multiple geriatric conditions. They wrote in their report: These increases are not easily explained. Has the willingness to report increased among physicians? Are physicians more inclined to grant patients' requests for euthanasia? Are patients more resolute when discussing their wish for euthanasia with their physician? Is the—generally positive—fact that people in the Netherlands are living longer a possible explanation for the rise in the number of notifications? Or is it also related to the demographic composition of the Dutch population? These are all fair questions, but there is another which is conspicuous by its absence-namely, could the RTEs themselves be part of the explanation? That The Netherlands has created a post-event review system is commendable. But all audit activity, and especially where there are serious risks and where the consequences of error are grave, needs to pose serious and robust challenge if it is to be effective. It is open to question whether the RTEs as they stand are meeting this requirement. Their system of ‘limited review’ for key criteria and their apparent reliance on the SCEN network to act as a long-stop at the pre-event stage are not easy to reconcile with the concept of rigorous scrutiny. It is difficult to avoid the impression when reading the RTEs’ anonymised case summaries that there is a reluctance to rule notifications out of order. The authors of the study of DCNM cases seem to have come to a similar conclusion. They write: If the review system sets strict limits and provides scrupulous monitoring, then the extremely low rates of non-compliance would indicate a major achievement in preventing abuses and errors. An alternative explanation is that the rates are low because the system is not designed to, or cannot, provide such strict oversight. By the time the committees see a request the patient is dead. But that surely does not mean that they should limit their examination to issues of process—what their 2016 report refers to as ‘limited review’. It is certainly necessary that integrity of process should be confirmed. However, it is conceivable that decisions to provide PAE or PAS might well follow the processes correctly but are nonetheless misguided. As observed above, while some of the criteria laid down in the 2001 Act—such as the enlistment of an independent second opinion or the communication to a patient of his or her diagnosis and prognosis—are relatively straightforward and amenable to a tick-box approach, other—crucial—ones, including whether a request is voluntary and well-considered and whether there is unbearable suffering and no reasonable alternative to euthanasia, call for the exercise of judgement. An effective system of case review must surely re-examine those judgements as well as the processes that led up to them. There is perhaps another consideration to be borne in mind in looking at the effectiveness of the review process. All audit, if it is to be effective, calls for a sceptical, detached and impartial mindset. In financial or business audit and in other areas of activity where there is social consensus over the underlying aims and values, finding auditors with these characteristics does not present a problem. Euthanasia, on the other hand, is a controversial and potentially divisive issue in which there are strongly held views on both sides of the political debate. This raises the question: how are impartial and objective auditors to be found who are sufficiently unencumbered by ‘baggage’ (on both sides of the debate) to review reported acts of euthanasia dispassionately and with an appropriate degree of scepticism? It would be interesting to know how many members of the RTEs have activities or backgrounds with the potential for a conflict of interest with objective and challenging audit. However, it is not just the RTEs which could be a factor of the current situation. The authors of the study referred to above comment that ‘the culture of trust in the authorities that regulate the EAS system is likely supported by the awareness that no doctor under the current law has suffered any legal consequences for reporting cases that do not conform to the due care criteria’.11 Human nature being what it is, deterrence is an important factor in legal compliance. It is undeniable that the incidence of euthanasia in The Netherlands is high and rising year on year. According to a November 2017 article in the UK newspaper The Guardian15 the annual number of such deaths is set to exceed 7000 and the SLK is looking to recruit more doctors and nurses to cope with the increasing demand. If there was any taboo, the SLK’s Director, Steven Pleiter, is quoted as saying, ‘it has gone. There is a generation coming up, the post-war generation, which is now coming to the life stage in which they will die, and this generation has a far more clear and expressed opinion about how to shape their own life end. I expect far more growth in the years to come. There can be little doubt that the post-war generation is more demanding than its predecessors and this is almost certainly a factor of the growth of demand for euthanasia, though there are other, equally important, factors, such as changes in the pattern of dying, where longer life-spans are not always accompanied by extended health and capability, and the growth of individualism. However, the question arises: is recruiting more staff to satisfy demand rather than getting to the roots of what is going on the most appropriate way to deal with this situation? As Professor Theo Boer, a member of the RTEs until 2014, is quoted in the article as saying: I know lots of people who now say that there is only one way they want to die and that’s through injection. It’s getting too normal. Conclusion There are some features of the Dutch 2001 law that are commendable. The very title of the law—Termination of Life on Request and Assisted Suicide Act—is admirably clear: the label matches exactly the contents of the tin. This cannot be said for the euphemistic phraseology and linguistic contortions—Death with Dignity, End of Life Options, Medical Aid in Dying—which characterize similar ending-life laws in certain other jurisdictions. The Dutch law also appears to recognize the difficulty of setting artificial parameters, such as terminal illness, for legalized euthanasia or assisted suicide. If the relief of suffering is to be the touchstone for ending or providing the means for ending other people’s lives, it is difficult to see the logic in providing such help to persons who are expected to die of natural causes in the near future but withholding it from others with chronic conditions who may have years of discomfort ahead of them. A key difference between the Dutch 2001 law and similar laws in a handful of US States is that it allows PAE as well as PAS. As observed above, the overwhelming majority of deaths under the Dutch law in 2016 were of PAE rather than PAS. Canada, which legalized both PAS and PAE in 2016, seems to be heading in the same direction: in the first year of that law’s operation almost all of the 1982 deaths reported deaths were the result of PAE. Why should this be so? Perhaps, with its direct involvement of a doctor in administering injections of lethal drugs and its placing of the patient in the position of passive recipient rather than active ingestor, PAE is misperceived as having attributes of medical care. Whatever the reasons, it is indisputable that, where PAE is legalized alongside PAS, it has the effect of driving out the latter, and of driving up the numbers of hastened deaths dramatically. Another commendable feature of the Dutch law is its provision for post-event scrutiny of acts of PAE and PAS. Such scrutiny is necessary both to deter malpractice and laxity and to provide transparency. Post-event audit arrangements have been conspicuous by their absence from recent attempts to change the law in Britain. However, there are some serious questions over whether the Dutch review system is providing sufficiently robust oversight of the practice of legalized PAE and PAS. Does the Dutch experience have any lessons for Britain, where there are continuing—though hitherto unsuccessful—attempts to legalize what is being called ‘assisted dying’? Campaigners for legal change here are inclined to dissociate themselves from Dutch arrangements and to assure Parliament and the public that their ambitions are limited to legalisation solely of PAS for terminally ill people on the model of the US State of Oregon. However, the question arises: for how long would artificial restrictions such as terminal illness, 6-month prognosis and self-administration of lethal drugs remain in place in the event that an Oregon-style law were to be enacted in the UK? Would the development of any such law follow the pattern of a sparsely populated State 5000 miles away on the West Coast of the United States- where, it should be noted, there are pressures to extend the existing PAS law? Or would it follow that of another densely populated and urbanized country just across the North Sea with whom we have had close links for centuries? It is impossible to say, but it cannot be safely assumed that the Dutch experience has no warnings to offer on how legalisation of ‘assisted dying’, if that were ever to take place, could develop in the UK. Conflict of interest statement The authors have no potential conflicts of interest. References 1 Termination of Life on Request and Assisted Suicide (Review Procedures) Act, April 2002. 2 Regional Euthanasia Review Committees: 2006 Annual Report. www.euthanasiecommissie.nl 3 Second Interim Report on Medical Assistance in Dying in Canada. https://www.canada.ca/en/health-canada/services/publications/health-system-services/medical-assistance-dying-interim-report-sep-2017.html 4 HL Paper 86-II, House of Lords (Session 2004–05), p. 481. 5 Onwuteaka-Philipsen BD, Brinkman-Stoppelenburg A, Penning C, et al.  . Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional study. Lancet  2012; http://dx.doi.org/10.1016/S0140-6736(12)61034-4. 6 van der Heide A, van Delden JJM, Onwuteaka-Philipsen BD. End of Life Decisions in the Netherlands over 25 years. N Engl J Med  2017; 377: 492– 4. DOI:10.1056/NEJMc1705630. Google Scholar CrossRef Search ADS PubMed  7 Regional Euthanasia Review Committees: 2002 Annual Report. www.euthanasiecommissie.nl 8 Regional Euthanasia Review Committees Code of Practice, The Hague, April 2015, p. 5. 9 RTEs Report for 2002. 10 RTEs Code of Practice, April 2015, p. 5. 11 Miller DG, Kim SYH. Euthanasia and assisted suicide not meeting due care criteria in the Netherlands: a qualitative review of review committee judgements. Br Med J  2017; 7: bmjopen.bmj.com/content/7/10/e017628. 12 RTEs Report for 2002. 13 House of Lords Report 86-II (Session 2004-05), p. 481. 14 RTEs Report for 2002. 15 ‘Any taboo has gone’, The Guardian, 9 November 2017. https://www.theguardian.com/world/2017/nov/09/any-taboo-has-gone-netherlands-sees-rise-in-demand-for-euthanasia © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

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British Medical BulletinOxford University Press

Published: Mar 1, 2018

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