Start, Progress and Formalizing of the Euthanasia Debate

The societal debate about euthanasia in the Netherlands was triggered in 1973 by the so-called “Postma case” (Sheldon 2007). A physician helped her dying mother end her own life following repeated and explicit requests for euthanasia. The physician eventually received a short, suspended sentence. While the court upheld that she did commit murder, it offered an opening for regulating euthanasia by acknowledging that a physician does not always have to keep a patient alive against his or her will when faced with pointless suffering. As the first euthanasia test case, it broke social taboos in a country with strong Christian traditions. It also reflected a wave of awareness among many young medical professionals about the limits of medical care and patients’ self determination.

In the 1980s, the debate about euthanasia progressed and formalized. In 1980, the Committee of Attorneys-General took a special interest in physicians’ end-of-life decisions. To achieve uniformity in policy, they decided that every case of euthanasia should be scrutinized and that it should be decided whether or not the attending physician should be prosecuted. In 1982, the Health Council advised that a State Commission should be installed to address the definition of euthanasia as well as the criteria under which it should be allowed. In 1985, the Commission produced its report. The Commission defined euthanasia as “intentionally terminating another person’s life at the person’s request”. This definition has been used ever since. The Commission also drew up a series of criteria for due care to be met in every case of euthanasia. We shall return to those criteria later.

When the State Commission was working on its report, the Supreme Court ruled on the Schoonheim case, in 1984 (Griffiths et al. 1998). It was the first euthanasia case that was judged by the Dutch Supreme Court. Euthanasia was performed on the explicit request of a 95-year-old patient who suffered unbearably of a combination of deteriorating eyesight, hearing and speech, as well as being bedridden and experiencing general deterioration and loss of dignity. The Court concluded that the physician had acted in a situation of “necessity”, that is, the physician was confronted with a conflict of duties: the duty to relieve suffering and the duty not do harm. The physician was acquitted from prosecution.

The Role of the Royal Dutch Medical Association

The Royal Dutch Medical Association also undertook important steps towards formal societal control of euthanasia in the Netherlands in the 1980s. It took an official affirmative position regarding the legalization of euthanasia, and called for the elimination of barriers for physicians who intended to report their life-ending acts. It emphasized that only physicians should be allowed to perform euthanasia and that euthanasia can only take place within a physician-patient relationship. The Royal Dutch Medical Association further tried to improve formal societal control of euthanasia through encouraging physicians to report their cases. It brought out their vision on euthanasia for the first time in 1984, describing how physicians could prudently deal with patient’s request for euthanasia. (Central Board of the Royal Dutch Medical Association 1984) This vision on euthanasia was revised several times. In this way the medical professionals, through their professional organization, influenced the development of the due care criteria.

National Notification and Reporting Procedure for Euthanasia

After the start of the debate on euthanasia, some physicians were willing to report euthanasia cases and thus be held accountable. However, until the mid-1980s only a very small number of cases were reported. In 1990, the Ministry of Justice—together with the Royal Dutch Medical Association—agreed to proclaim a formal and uniform notification procedure, aiming at transparency, accountability, and harmonizing regional prosecution policies. Physicians who had complied with the criteria for due care for euthanasia would not be prosecuted. The notification procedure further aimed at eliminating practices that were perceived as hampering the physicians’ willingness to report. Examples are physicians treated as a murder-suspect, policemen interrogating relatives shortly after a patient died of euthanasia, or doctors who were taken for questioning from their surgeries, in front of patients, but subsequently found to have done nothing wrong.

This notification procedure entailed that the physician performing euthanasia informed the local medical examiner about his or her act through filling in an extensive questionnaire. Subsequently, the medical examiner informed the public prosecutor, who decided whether the physician had adhered to the criteria for due care or should be prosecuted.

As a next step, in 1998, a national reporting procedure was developed through establishing multidisciplinary review committees, consisting of a lawyer, a physician, and an ethicist. These committees judged the reported cases and advised the public prosecutor about whether or not the criteria for due care had been fulfilled. The reporting procedure was endorsed by many physicians, and the review committees only rarely found serious violations of the requirements.

The Euthanasia Act

After two decades of policy interventions, in which the public acceptance of euthanasia had further increased (from nearly 50% in 1966 up to 90% in 1998 (van der Maas et al. 1995)), a shift in the composition of the Dutch governing coalition occurred, and in 2001, the parliament decided that euthanasia should be legalized. On April 1st, 2002, the Euthanasia Act came into effect to regulate the ending of life by a physician at the request of a patient who was suffering unbearably without hope of relief. The criteria for due care, originally formulated by the State Commission, had been further developed, partly through case law (de Haan 2002). They require a physician to assess that:

1. The patient’s request is voluntary and well-considered;

2. The patient’s suffering is unbearable and hopeless;

3. The patient is informed about his situation and prospects;

4. There are no reasonable alternatives. Further,

5. Another independent physician should be consulted; and

6. The termination of life should be performed with due medical care and attention.

The Act officially legalized euthanasia, but in effect it mainly legalized an existing practice. The only major change was that, under the Act, the review committees needed to forward to the public prosecutor only those cases in which the criteria for due care criteria were not met. As such, the Act has diminished legal interference with physicians’ medical end-of-life practices. In the period 2003–2005, the review committees gave the verdict of non-compliance in 15 cases on a total of 5,600 reported cases. The main reason for the verdict of non-compliance was a failure to fulfill the requirement of consultation of a second “independent physician”. None of the involved physicians was eventually prosecuted (Onwuteaka-Philipsen et al. 2007). Most physicians think that the Act has improved their legal certainty and contributes to the care with which euthanasia and physician-assisted suicide are practiced (Onwuteaka-Philipsen et al. 2007).

Methodology

Classification of End-of-Life Decisions

The questionnaire focused on the characteristics of end-of-life decisions that preceded the patient’s death. Such decisions can be characterized by several aspects: the acts of the physician (e.g. administering drugs or forgoing treatments), the intention of the physician (death can be explicitly intended, partly intended, or only taken into account), the involvement of the patient (actively involved in the decision-making process or not), and the life-shortening effect. The key questions for every death are shown in Box 1. When at least one of the questions (a) were answered with yes, the case was classified as a non-treatment decision. When at least one of the questions (b) was answered with yes, the case was classified as the alleviation of symptoms with a possible life-shortening effect. When question (c) was answered with yes, the case was classified as euthanasia when the drug was administered by the physician at the explicit request of the patient, and as physician-assisted suicide when the patient had taken the drug him- or herself. In the remaining cases where question (c) was answered with yes, but without explicit patient request, the case was classified as ending of life without an explicit request. For cases in which more than one question had been answered affirmatively, the decision with the most explicit intention prevailed over other decisions, whereas in cases of similar intentions question (c) prevailed over (b) and (b) over (a). A prominent aspect of the key questions is that words such as “euthanasia” and “physician-assisted suicide” are not used in the questionnaire, mainly because they may have different connotations and may lead to different interpretations by many physicians. In each study, the key questions were followed by questions about the decision-making process, the type of drugs that had been used, and the degree to which death had been hastened, according to the physician. Numbers of reported cases of euthanasia of physician-assisted suicide were obtained from the Public Prosecutors (1995, 1990) or the regional review committees (2001, 2005).

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Main Findings from the Death Certificate Studies

In 1990, 1.7% of all deaths were preceded by euthanasia, as compared with 2.4% in 1995 and 2.6% in 2001 (see Table 1). This trend reversed in 2005, when 1.7% of all deaths were the result of euthanasia (approximately 2,300 cases). The number of euthanasia requests also decreased in this period: from 9700 in 2001 to 8400 in 2005. Despite recommendations from the Royal Dutch Medical Association that physician-assisted suicide should be preferred over euthanasia, physician-assisted suicide had a much lower frequency than euthanasia in each study; in 2005 this occurred in 0.1% of all deaths (approximately 100 cases annually). Possible explanations for the frequent choice of euthanasia over physician-assisted suicide are that physicians want to control the act of ending life and to have medical assistance available in case of unforeseen difficulties, which are more likely to occur when patients take the drugs orally themselves (Groenewoud et al. 2000). Euthanasia is also often preferred when patients are physically too weak to take the drugs themselves. An important factor in explaining the decline in the frequency of euthanasia and physician-assisted suicide in the period 2000–2005 may be an increased use of other options to relieve the patient’s suffering, such as continuous deep sedation, which was for the first time included in the 2001 study and has increased from 5.6% of all deaths in 2001 to 8.2% in 2005 (Rietjens et al. 2008). Table 1 further shows that the frequency of ending of life without an explicit patient request decreased from 0.8% of all deaths in 1990 to 0.4% in 2005 (approximately 550 cases annually). Further analyses of the cases of ending of life without an explicit request show that these concern nearly always patients who are very close to death, are incompetent but with whom the hastening of death has been discussed earlier in the disease trajectory and/or with their relatives, and for whom opioids were used to end life (Rietjens et al. 2007).

Forgoing of potentially life prolonging treatments (either withholding or withdrawing) and intensified alleviation of symptoms occurred much more often than active ending of life. In all of the studied years, the frequency of forgoing of life-prolonging treatments was rather stable, between 16–20% of all deaths. The percentage of the use of intensified alleviation of symptoms increased from 19% of all deaths in 1990 up to 25% in 2005.

Table 2 shows that the reporting rates of cases of euthanasia and physician-assisted suicide have increased since the first study in 1990. It can be estimated that in 1990, 18% of all euthanasia and physician-assisted suicide cases were reported, at that time to the Public Prosecutor. This percentage increased to 41% in 1995 (Public Prosecutor), 54% in 2001 (review committees) and 80% in 2005, after the introduction of the Act (review committees).

In the 2005 study, it could be established that the major reason for not reporting was that the physician did not regard the course of action as euthanasia or physician-assisted suicide and therefore did not see the necessity to legally report the case (Onwuteaka-Philipsen et al. 2007). This was strongly related to the kind of drugs used. In cases where physicians used drugs that are advised by the Royal Dutch Association for the advancement of Pharmacy, that is, a barbiturate followed by a muscle-relaxant for euthanasia or barbiturates for physician-assisted suicide, the percentage of reporting in 2005 was 99%. In cases where other drugs were used to end a patient’s life with the explicit intention to end life at the patient’s request, which are mostly opioids, the reporting rate was 2%.

Table 3 shows the frequency of euthanasia and physician-assisted suicide in different patient subgroups in 2001 and 2005. The rates in 1990 and 1995 were comparable to those of 2001. The highest rates of the use of euthanasia were found in cancer patients: in 2005, 5.1% of all deaths of cancer patients were preceded by euthanasia or physician-assisted suicide. This explains partly the higher frequency of euthanasia and physician-assisted suicide among younger patients. Furthermore, compared to clinical specialists and nursing home physicians, general practitioners performed euthanasia or physician-assisted suicide in a higher proportion of deaths. This can be explained by the fact that euthanasia is usually performed in the context of a longstanding patient-physician relationship, which is typical for the type of contact that general practitioners have with their patients.

Euthanasia and physician-assisted suicide were by definition always discussed with the patient (Table 4). In the large majority of cases, the physician also discussed the use of euthanasia or physician-assisted suicide with the patient’s family and with one or more colleagues. This indicates that euthanasia is usually performed in an open atmosphere. The rates from 1990 and 1995 were comparable. In most of the cases of euthanasia or physician-assisted suicide, life was ended with drugs that are recommended by guidelines, that is, muscle relaxants and/or barbiturates. Opioids were used in 27% of the cases in 1995, 22% of the cases in 2001, and 16% of the cases in 2005 (no comparable data available from 1990). Thus, there seems to be a tendency to use the recommended drugs when performing euthanasia or physician-assisted suicide, which is probably due to increased knowledge of physicians of how to perform euthanasia.

Palliative Sedation: An Alternative for Euthanasia?

When patients who are nearing death have symptoms that cannot be relieved with conventional medical care, another option to relieve the patients’ suffering is to render them deeply asleep, to make them unaware of suffering. This practice is often referred to as “palliative sedation”. Medical indications for continuous deep sedation are present when one or more untreatable or refractory symptoms are causing the patient unbearable suffering (Verkerk et al. 2007; de Graeff and Dean 2007). In practice, pain, dyspnea and/or delirium are the refractory symptoms that lead most frequently to the use of continuous deep sedation (de Graeff and Dean 2007). A second precondition for the use of continuous deep sedation is the expectation that death will ensue in the reasonably near future—that is, within one to two weeks (Verkerk et al. 2007; de Graeff and Dean 2007) In these situations, a physician may decide to commence continuous deep sedation and in principle to continue it until death. In this situation, it is assumed that continuous deep sedation will not include the artificial administration of food or fluids because this will only prolong the patient’s suffering. If the patient’s life expectancy exceeds one to two weeks at the time that sedation is started, continuous deep sedation will affect the time of death, which is hastened by dehydration. Studies in the Netherlands show that the estimated life shortening effect of continuous deep sedation is limited in most cases (Rietjens et al. 2008, 2004).

As already described, the use of continuous deep sedation in the Netherlands was for the first time studied in 2001 and has increased from 5.6% of all deaths in 2001 to 8.2% in 2005 (Rietjens et al. 2008). Frequencies in other European countries are between 3–8% of all deaths in 2001 (Miccinesi et al. 2006). An important reason for the increased use of continuous deep sedation in the Netherlands is probably the increased attention to its use: guidelines have been published and continuous deep sedation received increasing societal and media attention. Another possible reason for the increased use of continuous deep sedation is that it may have increasingly been used as a relevant alternative to euthanasia (Rietjens et al. 2008). In the period 2000–2005, the use of euthanasia decreased from 2.6% to 1.7%. The increase of continuous deep sedation took place mostly in the subgroups in which euthanasia is most common: patients attended by general practitioners and those with cancer. Also, in 9% of the cases, continuous deep sedation was preceded by an ungranted euthanasia request. This suggests that continuous deep sedation may in some instances be a relevant alternative to euthanasia.

This raises the question whether continuous deep sedation may take away the need for euthanasia. The answer points to the similarities and differences between euthanasia and continuous deep sedation. The starting point of both practices is similar: a patient who suffers severely from a fatal disease. Yet, there are marked differences (Rietjens et al. 2006a). Continuous deep sedation is most often used in the last week of life to relieve unbearable physical suffering. Euthanasia is in the majority of patients applied somewhat earlier in the disease process to relieve unbearable suffering that is often rooted in a perceived loss of dignity and independency, and pointless suffering. Further, it is known that patients have varying perceptions about what constitutes a “good death”. Some consider control over the moment and time of dying of utmost importance, whereas others prefer to die in a deep sleep (Rietjens et al. 2006b; Steinhauser et al. 2000a, b). As such, euthanasia and continuous deep sedation are both relevant options to relieve unbearable suffering at the end of life. Nevertheless, the substitution of a part of euthanasia by continuous deep sedation shows that the situations in which physicians consider their use and physicians’ reasons for their use are not fully defined yet, and are still developing. More research and debate is needed to monitor both practices, and to investigate how they can contribute to an optimal quality of dying.

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