This brief history of legal change with regard to euthanasia does not answer the fundamental question about the regulation of the termination of the life in the Netherlands: Why did the Dutch – unlike nearly every other developed nation – choose this approach? In order to understand the Dutch difference as summarised in the four points of the preceding paragraph, we must take a close look at some features of society and culture in the Netherlands, including Dutch views of death, medical technology and individualism, factors which are supposed to have influenced the debate on euthanasia.
The taboo on death
In the second half of the 20th century, taboos regulating several spheres of private life – including birth, sexuality and death – were loosened. Ariès distinguished two parts of the taboo related to death: ‘the big lie’ and ‘the dirty death’ (Ariès 1981). ‘The big lie’ is the idea that the dying patient should not be told about his or her diagnosis and prognosis. Telling the truth about a forthcoming death was seen as cruel and likely to worsen the patient's condition. Furthermore, medical knowledge was so primitive that confident diagnosis and prognosis were difficult. The ‘dirtiness’ refers to seeing death as indecent: death was to be kept out of sight just like many other bodily processes, for example, excretion. The growing importance of cancer as the main cause of death, and thereby the growing frequency of a protracted and painful deathbed, contributed to the ‘dirtiness’ of dying (Sontag 1978). Access to a dying person was restricted to a few intimates and those who were indispensable for the nursing of the patient. After World War II the loneliness of the dying deepened further as dying at home decreased in favour of dying in an institution.
It is widely agreed that in most western countries the taboo on death largely disappeared in the 1960s (Ariès 1981). Wouters (1990) examined the diminishing of the taboo on death in the Netherlands by looking at, among other things, changes in the ways dying persons were treated. Until 1955 his sources did not reveal any interest in emotions; it was only through rituals that emotions were allowed to be expressed. Beginning in the mid-1950s the dominant codes of behaviour allowed for greater directness and openness. This new attitude toward emotions resulted in a far-reaching curiosity about everything connected with death and dying (1990: 229). In this context, new rituals for burial ceremonies were developed and discussions about medical treatment at the end of life began.
Kennedy (2002) argues that the diminishing of the taboos on death (and sex) occurred more rapidly in the Netherlands than in the rest of the Western world. He explains this by pointing to Dutch culture, in which candour is highly valued, and to the important changes which took place in the Netherlands in the 1960s and 1970s. With the advent of internationalisation, increased prosperity and secularisation, the once very traditional Dutch society was thrown into flux. The Dutch saw no reason to hold to ‘old-fashioned’ ideas and convictions which seemed arbitrary and repressive (2002: 28–29).
The disappearance of the taboo on death created an opportunity for patients to play a more active role. The awareness of an approaching death offers the opportunity to think about one's preferences for that moment and about desired and undesired medical treatments. Thus, the weakening of the taboo shifts control of the event prompting a reconsideration of the proper role of caregivers both medical and religious.
Development of medical technology and the Dutch healthcare system
After World War II, medical technology flourished. Antibiotics were increasingly available and techniques for anaesthesia, and thus for surgical treatment, improved considerably. Techniques for resuscitation were also substantially expanded. Moreover, the refined surgical techniques and increased knowledge about the problems of rejection brought organ-transplantation within the doctors’ reach. Medicine appeared to be a domain without limits. In the 1960s, however, feelings of discomfort arose, discomfort which was provoked by medical embarrassments like the thalidomide affair. These affairs showed the need for the regulation and supervision of medicine. As a result, the state began to take a more active role in healthcare. At the same time criticism was heaped on the power medicine had come to exercise in society (in the Netherlands by Van den Berg 1978, among others). Patients were urged to challenge the almost autonomous growth of medical technology and its range of application. This movement also caused doctors to reflect on the limits of their profession.
Part of the response to developments in medical technology was public discussion of medical-ethical questions. The ability of doctors to postpone death, even when recovery was impossible, created questions about when life should be preserved and the permissibility of relieving pain when such relief would hasten death. Caregivers and ethicists also pondered the difference between acting and refraining from action. If abstention is allowed when the result is the patient's death, why should actively ending the life of a patient who suffers unbearably and hopelessly be prohibited? The role of the patient was another contested issue: should the patient participate in decisions concerning prolonging or shortening his or her life?
In the Netherlands, consensus on most of these issues was reached in a relatively short time. Pain relief with a life-shortening side effect was considered permissible if the relief of pain, and not death, was the aim of treatment. Continuation of futile medical treatment came to be seen as a form of maltreatment and, consequently, stopping it became a duty. Today pain relief with a life-shortening side-effect and the cessation of futile medical treatment are considered ‘normal medical practice’–‘behaviour that doctors are generally authorised to perform based on medical indications and according to professional (technical and ethical) norms’ (Griffiths et al. 1998: 91).
Debate over the doctor-patient relationship resulted in a strengthening of the patient's position. In the new Constitution of 1982, an article safeguarding the right to physical integrity was included. Thereafter, informed consent and the right to refuse treatment were elaborated in the Civil Code (Law on Contracts for Medical Treatment).
Characteristics of the Dutch healthcare system – which reflect societal attitudes – can account, to some extent, for the rapid and rather uncomplicated process of change. Traditionally, social politics in the Netherlands has reflected broad support for equity and solidarity in sharing financial burdens. The Netherlands is a well-developed welfare state. In healthcare, the country's cultural commitment to social equity and solidarity translates into a dominant role for income-related payments, and limited use of co-payments. Healthcare insurance companies levy contributions based on income, and offer entitlements according to need. Virtually everyone in the Netherlands is covered by health insurance.
Home care has a prominent position in the Dutch healthcare system and general practitioners (GPs)9 play an important role in the healthcare system. GP care has three major system characteristics: ‘listing’, ‘gatekeeping’ and ‘family orientation’. Listing means that, in principle, every Dutch inhabitant is registered with a GP. Gatekeeping refers to the fact that patients generally do not have direct access to specialists or hospital care but must be referred by their GP. The impact of gatekeeping is reflected in the low referral rate: more than 90 per cent of all complaints are treated by GPs. The third characteristic, family orientation, refers to the fact that a Dutch GP generally serves as the personal physician for a patient's entire family. Moreover, GPs make many home visits: 17 per cent of all contacts are visits to the patient's home (De Melker and Verhey 2002: 69–70).
The Netherlands is further distinguished by rates of death and birth at home. De Vries (2005) points out that birth and death at home fit well with Dutch ideas about medicine and science, and Dutch notions of ‘thriftiness’. In his sociological analysis of the high rate of home birth in the Netherlands, De Vries also notes that ‘The Dutch are disinclined to celebrate the heroic’ (2005: 163–166). With respect to end-of-life decisions this can be illustrated by the frequency of deaths with a GP as the doctor in attendance: 40 per cent of all deaths take place at home or in a residential home. As an explanation of the role of GPs in the healthcare system, De Vries notices that the Dutch view of the ‘family’ is distinctive. In the late 17th and early 18th centuries, the Dutch were the first among modern nations to experience the ‘nuclearisation’ of the family. In other European countries the nuclearisation of the family occurred simultaneously with industrialisation and was marked by the increasing use of professional help for events once attended by family members: birth, sickness and death. Having nuclearised earlier, the Dutch family resisted the institutionalisation of birth and death (De Vries 2005).
What conclusion can be drawn with respect to changes in the social control of medical practice at the end of life? In the Netherlands as elsewhere, developments in medical technology have provoked a change in the norm regarding the sanctity of life. Although life is still seen as something very important, it has come to be acknowledged that respect for life is not unlimited. In the Netherlands, when discussions emerged concerning who should participate in the decision whether or not to stop treatment, or whether or not to relieve pain with a possible life-shortening effect, it became clear that medical considerations alone could not determine the issue. Opinions about quality of life became part of the discussion. The patient's opinion was, therefore, more important. In this way, self-control based on the personal ethics of the doctor was combined with second-party control. The extent of second-party control in the Netherlands is shown by the high percentage of physicians who report discussions with patients in end-of-life decision-making (Van der Heide et al. 2003). With respect to euthanasia second-party control is a necessary condition – otherwise the termination of life is not an option.
The data of Van der Heide et al. point to another change: the existence of non-governmental third-party control. Third-party control by other doctors and other caregivers is possible if doctors discuss their decision with them. It is not clear whether developments in medical technology caused this change but it seems obvious that more technical complexity goes together with more collegial consultation. The Netherlands is among the countries in which professional discussions on end-of-life decisions occur frequently. Apart from the required consultation with another doctor, which took place in 91 per cent of the cases, doctors also consult nursing personnel frequently: specialists consulted nursing personnel in 78 per cent of the cases of euthanasia and GPs, who normally work without nursing personnel, consulted a nurse in 16 per cent of the cases of euthanasia (Van der Wal et al. 2003).
With respect to ‘normal medical practice’ at the end of life, therefore, we see self-control supplemented by second-party control and informal third-party control, but not with governmental social control. With respect to euthanasia we not only see self-control supplemented by second-party control (by definition) but also officially regulated third-party control. Consultation with an independent colleague is one of the requirements of careful practice, whereas the reporting procedure offers the opportunity for governmental social control.
Individualisation refers to the process by which social relations change from collectivism – a situation in which people are bound to each other and the place they live with strong, multiple ties – to individualism. International comparative research shows that the Netherlands is among those countries in which individual choice – for example with respect to divorce and soft drugs consumption – is widely accepted. This research also shows that in the Netherlands the ‘post-materialistic value-orientation’ is stronger than in most other countries (Inglehart 1997: 139). Preferences fitting into this value-orientation can be seen in the answers Dutch people give to questions regarding ‘self-determination with respect to one's body’ (Elchardus et al. 2000: 154–5): suicide, abortion, homosexuality, ‘euthanasia’ (defined as ‘terminating the life of an incurably sick person’) and divorce. Over the years, the Dutch have always scored high on the acceptance of homosexuality, suicide and ‘euthanasia’.
The consequences of this change for social control, however, are not clear in advance. Is individualisation connected with more or less informal social control? Did individualisation in the Netherlands lead to isolation and less sensitivity to one another's opinions? Whether or not the Dutch look after each other can be ascertained by research on trust and participation. In this research, the hypothesis is that a society of people who trust each other and where many people participate in civil society needs less regulation and less governmental social control (Fukuyama 1995). A comparison of 54 regions in seven European countries – Belgium, France, Germany, Italy, Spain, the Netherlands and the United Kingdom – shows that the Netherlands as a whole scores high on trust and participation (Beugelsdijk and Van Schaik 2003: 128). It can therefore be concluded that, although the Netherlands is an individualistic society, it is not a society of atomistic individualism. Hofstede (1997), who studied cultural differences in business, also sees the Dutch as non-atomistic individualists. In his research the Dutch appear as ‘feminine’ individualists, a combination the Dutch share with Nordic countries. Individualism makes them appreciate personal time, freedom and challenge, and ‘femininity’ makes them value good working relationships and co-operating (1997: 81–82).
How has this non-atomistic individualism influenced the public debate on euthanasia? How is self-determination discussed with respect to the end of life in the Netherlands? In the early years of the debate on medical behaviour that potentially shortens life, the issue of self-determination, or ‘having a say in one's own life’ as it was then called, was hardly ever mentioned. Beneficence was the most often invoked principle for legitimising life-shortening by doctors. In the 1970s consensus grew on a more restricted meaning of the word euthanasia: termination of life on request. At the same time, proponents of euthanasia connected beneficence with self-determination. The conjunction of these two principles is reflected in the ‘requirements of careful practice’, which require both a voluntary, well-considered request and unbearable and hopeless suffering. It is thus not self-determination as such but the combination of the request and the suffering that constitutes the situation in which termination of life is considered justifiable. In 2002 the Supreme Court ruled that only suffering based on a ‘disease’ leads to a doctor having a conflict of duties (Nederlandse Jurisprudentie 2003, no. 167). A consequence of legalisation via the justification of necessity is also that termination of life without a request can be, and sometimes is, considered justifiable. Therefore, although the position of Dutch patients has been strengthened, it is wrong to conclude that the Law on Termination of Life on Request rests only on self-determination10.
The Dutch are seen – correctly, I believe – as people who put a high value on their personal judgement. In the slipstream of the process of individualisation, opinions regarding the sanctity of life have changed. The vast majority of the Dutch think that euthanasia can be legitimate. The legalisation of euthanasia and assistance with suicide, which came into effect in 2002, reflects this belief. Much of the regulation surrounding euthanasia practice, however, seeks to guarantee that the choice for euthanasia and its implementation is not done in isolation by the patient and his or her physician. In 2001, consultation with relatives took place in 96 per cent of the cases of termination of life on request. There is circumstantial evidence that isolated persons hardly ever manage to convince their doctor to perform euthanasia.