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Select Committee on Assisted Dying for the Terminally Ill Bill Minutes of Evidence


Letter from the Royal Dutch Medical Association

  It is the policy of the Royal Dutch Medical Association not to interfere in discussions in other countries regarding the question whether euthanasia should be allowed (and/or legalized) or not. But of course we are quite willing to inform foreign persons and organizations about developments in the Netherlands (about 10 years ago we also spoke with the previous UK Committee, during a meeting at the British Embassy in The Hague).

Attached I send you the most recent and comprehensive text available in English. It is an article I have written December 2003. It has been published in the Journal of Law and Medicine 2004; 11: 312-323.

Royal Dutch Medical Association

5 August 2004

THE DUTCH EUTHANASIA ACT AND RELATED ISSUES

JOHAN LEGEMAATE

  In 2002 the Dutch Euthanasia Act came into force. This Act is the result of a lengthy developmental process. It codifies the requirements that have evolved in case law and medical ethics since 1973. Empirical data indicate that the Dutch euthanasia practice is stabilising. Euthanasia and assisted suicide occur in 2.7% of all deaths. Now that the Act has been passed, the focus is on improving the quality of medical decision-making. From an international perspective, the Dutch legislation is exceptional. However, it appears that other countries and international organisations are considering euthanasia legislation as well. It remains to be seen how influential the Dutch model will prove to be.

INTRODUCTION

  In April 2002 the Dutch Euthanasia Act came into force. This Act, officially named the Termination of Life on Request and Assisted Suicide (Review Procedures) Act,1 is the result of a development that started in 1973, when the first court case in The Netherlands regarding euthanasia was decided.2 In that case the court concluded that the average Dutch physician no longer considered it as her or his duty to prolong a patient's life under all circumstances. This led to a fierce debate at all levels of Dutch society. The 2002 Act can be seen as the final stage of a longlasting development, but at the same time it raises new questions and discussions. This article analyses recent developments in The Netherlands, focusing on legislation and case law. Furthermore, it attempts to place the Dutch situation into perspective, by comparing it to viewpoints and activities at the international level.

HISTORY

  In the 1973 court decision it was recognised that a physician could be allowed to prevent serious and irreversible suffering, even if this meant shortening the patient's life. At that time euthanasia and assisted suicide were punishable under all circumstances. In this particular case the physician was found guilty of breaking the law but the court gave her only a more or less symbolic punishment (a suspended sentence of one week's imprisonment). The decision prompted the establishment of the Dutch Voluntary Euthanasia Society and provoked a broad debate regarding the acceptability of physician-assisted death. Later, other court decisions confirmed that, under certain circumstances, euthanasia and assisted suicide, although forbidden by law, could be justifiable. However, the legal reasoning remained unclear until 1984, when the first euthanasia case3 reached the Dutch Supreme Court. The Supreme Court reasoned as follows:

    (i)  As a general rule euthanasia and assisted suicide are punishable. The Penal Code defines both activities as a crime.

    (ii)  However, when a physician is confronted with a conflict of duties he or she may invoke the so-called "defence of necessity". A conflict of duties arises when honouring a patient's request to die with dignity is the only way available to end unbearable and hopeless suffering.

    (iii)  The criteria for accepting the defence of necessity are to be derived from professional and medical-ethical opinions formulated by the medical profession.

  This legal line of reasoning served as the foundation of the practice of euthanasia until the 2002 Act came into force. As shown below,4 the Act introduces a new legal framework but at the same time retains certain elements of the previous situation. In 1984 another important event took place. In August of that year the Royal Dutch Medical Association (RDMA) published a viewpoint on euthanasia and assisted suicide. This viewpoint dealt extensively with the requirements a physician had to take into account before being allowed to perform euthanasia or assist with suicide.5 These requirements were based on earlier court decisions and insights from the medical profession. The publication of the RDMA viewpoint resulted in a very interesting interplay between the existing legal framework and the rules and opinions of the medical profession. In court cases that followed, judges often referred to the RDMA viewpoint. However, later additions to the viewpoint were inspired by case law. The RDMA viewpoint has been regularly updated, most recently in September 2003, and still provides guidance to physicians who are confronted with a request for euthanasia or assisted suicide.

  Also in 1984, the first initiatives to change the law were launched. Proponents of permissive legislation argued that in a democratic society the rules regarding important and fundamental issues like physician-assisted death should be set by the Parliament. Pointing at polls that indicated broad support for euthanasia in all layers of society, they advocated that the gap between the Penal Code (euthanasia forbidden) and actual practice (euthanasia allowed under certain circumstances) should be bridged by new legislation. However, at that time there was no political majority to change the law. Between 1984 and 1991 several proposals were introduced and rejected. In 1994 a minor change of the law came about with formal legal status being given to the notification procedure. This procedure was introduced on a voluntary basis in 1991. Its aim was to encourage physicians to report cases of euthanasia and assisted suicide to the medical examiner and the district attorney. The 1994 Act did not address other issues. It was limited to changing the voluntary status of the notification procedure into an obligation for the physician to report cases. In 1998 another change took place. The notification procedure was amended to include a multidisciplinary evaluation committee, made up of a lawyer, a physician and an ethicist. It was the committee's task to advise the district attorney about reported cases. The rationale for this change was the wish to replace a strictly legal way of assessing reported cases with a broader perspective. The government hoped that such a change would increase the willingness of physicians to report cases. The notification induced changes in the prosecution policy of the government. Already at the beginning of the 1990s the government indicated that, in spite of the punishability of euthanasia and assisted suicide under all circumstances, only those cases in which the physician had neglected the existing requirements (as formulated in case law and in the RDMA viewpoint) would be prosecuted. Since then the number of prosecuted cases has remained low: an average of three to five cases per year.

  Real legislative progress was made possible by a rather dramatic change in the political arena. Following the 1994 parliamentary elections, a government without the Christian Democratic Party was formed, for the first time in 75 years. The new government was made up of parties (Social Democrats and Liberals) which had supported permissive legislation earlier on but, due to the influence of the Christian Democrats, had never been able to realise a political majority in Parliament. In its second term (1998-2002), this left wing-liberal government decided to change the Penal Code and to decriminalise euthanasia and assisted suicide. This resulted in the 2002 Act.

  It should be noted that in the Act, as well as in the case law that preceded it, euthanasia and assisted suicide are and have always been treated alike. In both cases the same requirements and procedures apply. Unlike other countries and jurisdictions, in which a sometimes rather sharp moral distinction is made between euthanasia (the physician administering the medication) and assisted suicide (the patient taking the medication supplied by the physician),6 Dutch physicians, judges and policy-makers have never made a fundamental distinction between the two. Whether a physician and a patient opt for euthanasia or assisted suicide is left up to them, depending on the circumstances of the case, the characteristics of the patient and her or his medical condition. In cases in which a choice can be made, the Royal Dutch Medical Assocation advises physicians for psychological reasons to favour assisted suicide, but this is not a binding rule.

THE 2002 ACT

  The coming into force of the 2002 Act is a landmark moment in the Dutch euthanasia debate. Being the result of a lengthy development rather than the beginning of a new period, the Act has not led to big changes in daily practice. The Act incorporates into the law developments and opinions which already were accepted in practice many years ago and is therefore more of a symbolic nature. The Act introduces only a limited number of new issues. It is often stated that the Act legalises euthanasia but this is not entirely true. Euthanasia and assisted suicide remain criminal offences. What the Act does is to create an exception to the punishability of euthanasia and assisted suicide for those physicians who have complied with the requirements of due care mentioned in the Act. Only if these requirements are met and the case is reported will the physician be exempted from criminal prosecution.

  The requirements of due care in the case of euthanasia and assisted suicide are laid down in Art 2 of the Act. Essentially these are the same requirements that are mentioned in the RDMA viewpoint of 1984:

    —    the patient has made a voluntary and well-considered request;

    —    the patient's suffering is unbearable;

    —    there is no other reasonable solution to the situation;

    —    the patient has been informed about her or his condition and prospects;

    —    the patient has been seen by at least one other (and independent) physician, who provides a written statement about the applicability of the requirements of due care; and

    —    the physician, when performing euthanasia or assisting with suicide, has to do so in a medically justified way (using the right medication etc).

  After he or she has ended the patient's life, the physician has to report the case to the medical examiner, using the form that is prescribed by law (in the Burial and Cremation Act1991 (as amended in 2002)). The form contains a number of questions to which the physician has to respond. These questions relate to the requirements of due care and related issues. The medical examiner hands over the reported case to the regional evaluation committee. Within six weeks the committee decides whether or not the physician has acted in conformity with the legal requirements. The committee normally makes its judgment on the basis of the written report of the physician. If the information provided is unclear or incomplete, the committee can ask the physician to provide additional data in writing or in person. Before the Act came into force, the opinion of the committee had the status of an advice to the district attorney. This has been changed. If the committee holds the opinion that the physician acted correctly, the case is closed and other authorities (such as the district attorney and the Medical Inspectorate) will not be informed. Only if the physician has neglected one or more of the requirements will the committee send its judgment to the district attorney and the Medical Inspectorate. Depending on the severity of the violation, they may decide to take action against the physician, by starting a criminal prosecution (district attorney) and/or a procedure before the Medical Disciplinary Board (Medical Inspectorate).

  The Act addresses several other issues as well, such as the legal position of a minor who requests euthanasia or assisted suicide and the validity of advance directives.

CASE LAW

  Case law has played in important role in developing the legal framework for euthanasia and assisted suicide. The 1984 decision of the Dutch Supreme Court, in which the legal opening for euthanasia and assisted suicide was created (the defence of necessity), was mentioned above. Ten years later, in June 1994, the Supreme Court published its ruling in the famous Chabot case.7 In this case the Supreme Court confirmed that physical as well as mental suffering can justify euthanasia or assisted suicide.8 Only a few months after the 2002 Act came into force, the Supreme Court had to decide another controversial issue. This case involved a general practitioner who assisted with the suicide of an 86-old former senator, Edward Brongersma. Brongersma had no serious physical or mental illness. He suffered from physical decline and struggled with his "pointless and empty existence". Brongersma, in other words, was "tired of life". After assisting with suicide, the general practitioner reported the case. The district attorney decided to prosecute him, stating that the law did not allow the "tired-of-life" criterion. The regional court acquitted the doctor, deciding that he had acted within the limits of the law. This verdict was overturned by the Appeals Court of Amsterdam in December 2001. The doctor appealed against this decision to the Supreme Court.

  On 24 December 2002 the Supreme Court rejected his appeal.9 The Supreme Court held that neither the previous rules (before 2002) nor the present Act covered "tired-of-life" situations. Physicians, the court found, must limit themselves to requests for euthanasia and assisted suicide from patients suffering from a medically classifiable physical or psychiatric sickness or disorder.

  Mr Brongersma's suffering was existential rather than medical. According to the Supreme Court, physicians do not have the experience to judge non-medical suffering. The Supreme Court decision in the Brongersma case prompted mixed reactions. Supporters of the decision were glad that the Supreme Court has drawn a line, making clear that a physician should not overstep her or his area of expertise. Critics pointed out that there is no black and white distinction between medical and non-medical suffering. In practice, they say, these are very complex situations in which physicians have to operate in a grey area. No doubt this debate will continue in the years to come. It is likely that, under the influence of "tired-of-life" cases, the emphasis of the debate will shift from physician-assisted death (or, as critics say, physician-dominated death) to possibilities and options which limit or even rule out the role and influence of physicians.

EMPIRICAL DATA

  For a long time empirical data regarding euthanasia, assisted suicide and other medical decisions concerning the end of life were lacking. This changed in 1991, when the first of a series of independent research projects was carried out. The aim of this research was to gain insight into the quantity and quality of medical decisions concerning the end of life. The research was done in 1991, 1996 and 2003. The most recent results can be summarised as follows:10

    —    The Netherlands has 16 million inhabitants. Each year 140,000 people die.

    —    At current rates, approximately 9,700 patients request euthanasia and assisted suicide each year. In about 3,800 of these cases a physician-assisted death takes place (euthanasia 3,500; assisted suicide 300). In the remaining cases the physician refuses to go along with the patient's request, the patient changes her or his mind or the patient dies of natural causes before the request can be considered or honoured.

    —    Euthanasia and assisted suicide occur in 2.7 per cent of all deaths. This percentage remained more or less stable between 1991 and 2003.

    —    The number of reported cases of euthanasia and assisted suicide increased from 41 per cent in 1996 to 54 per cent in 2003.

    —    Other medical decisions concerning the end of life take place much more frequently: decisions to forgo or stop treatment (21 per cent of all deaths); treatment aimed at alleviating pain or symptoms (20 per cent of all deaths).

    —    In a small percentage of cases (0.7 per cent of all deaths) physicians end a patient's life without an explicit request. This happens mostly with patients suffering from cancer in the last days or hours of their life.11

  It is common knowledge that medical decisions concerning the end of life, including physician-assisted death, occur in other countries as well. A recent comparative study revealed the incidence and main background characteristics of end-of-life decision-making practices in six European countries: Belgium, Denmark, (parts of) Italy, The Netherlands, Sweden and Switzerland.12 The percentage of deaths that were preceded by a medical end-of-life decision varied between 23 per cent (Italy) and 51 per cent (Switzerland). Administration of drugs with the explicit intention to hasten death (euthanasia, assisted suicide and ending a patient's life without request) occurred in all countries, but the rates varied: 1 per cent of all deaths in Denmark, Italy, Sweden and Switzerland; 1.82 per cent in Belgium; and 3.4 per cent in The Netherlands. The ending of life without a patient's explicit request happened more frequently than euthanasia in all countries except The Netherlands. The incidence of this was somewhat higher in Switzerland, The Netherlands and Denmark and highest in Belgium.

INTERNATIONAL REACTIONS AND DEVELOPMENTS

  Over the years many persons and organisations have criticised developments in The Netherlands. Most critical commentators stated that ending a patient's life is not compatible with the duties and responsibilities of a physician. Others feared that allowing euthanasia and assisted suicide would result in a slippery slope. In 2001 the Human Rights Committee of the United Nations voiced concerns regarding the implementation of the new Dutch Euthanasia Act. The committee did not question the Act as such nor its legal requirements, but focused on the (im)possibilities of safeguarding individual rights in actual practice. Would it be possible, the committee asked the Dutch Government, to guarantee the proper implementation of the Act? The committee appeared to be afraid that in practice the patient may be put under pressure to ask for euthanasia and assisted suicide. In its response, the Dutch Government emphasised the cumulative procedural safeguards and requirements mentioned in the 2002 Act: not only the physician's duty to report the case after the patient had died (screening ex post facto) but also the requirement to obtain the opinion of an independent physician before making a final decision about the patient's request (screening ex ante). The 2002 Act obliges the independent physician to see the patient and to send a written report to the physician who is considering the patient's request. The independent physician is fully responsible for the facts and considerations in her or his report. As will be shown below,13 initiatives have been taken to professionalise and strengthen the ex ante screening.

  Major opposition to the Dutch developments comes from the World Medical Association (WMA). At its 2002 annual meeting in Washington the WMA repeated its earlier statements against euthanasia and assisted suicide. In this resolution the WMA "reaffirms its strong belief that euthanasia is in conflict with basic ethical principles of medical practice". The WMA "strongly encourages all national medical associations and physicians to refrain from participating in euthanasia, even if national law allows or decriminalises it under certain conditions".14

  European developments seem to be moving in another direction. In 2002, not only in The Netherlands but also in Belgium, a Euthanasia Act came into force. The Belgian law is comparable with the Dutch one, using the same starting points and basic rules and only making different choices at some minor points. The one more fundamental difference is that the law in Belgium is limited to euthanasia and does not include the possibility of physician-assisted suicide, but this issue already has been resolved in practice. In 2003 the Belgian Order of Physicians recommended dealing with assisted suicide in the same way as with euthanasia, thereby implying an expansion of the requirements and procedures of the law to assisted suicide as well.

  Quite different from the debate within the WMA are the developments in the Council of Europe. In 1999 the Parliamentary Assembly of the Council of Europe adopted a "Recommendation on the protection of the human rights and dignity of the terminally ill and the dying".15 This recommendation advocated the use of palliative care and proposed to uphold the prohibition of euthanasia and assisted suicide. The text stated that a terminally ill or dying person's wish to die cannot, of itself, constitute a legal justification to carry out actions intended to bring about death. However, under the influence of developments in a number of European countries, including the increasing existence of empirical data, the Council of Europe appears to be moving in another direction. In September 2003 the Parliamentary Assembly's Social, Health and Family Affairs Committee approved a report on euthanasia by its member Dick Marty from Switzerland.16 In this report it is proposed that the Parliamentary Assembly of the Council of Europe call on the governments of member states:

    —    to collect and analyse empirical evidence about euthanasia and other end-of-life-decisions;

    —    to promote public discussion of such evidence;

    —    to take into account, in particular, the results of the Belgian and Netherlands legislation, notably their effects on the practice of euthanasia; and

    —    to consider whether legislation should be envisaged to exempt from prosecution doctors who agree to help terminally ill patients undergoing unbearable and hopeless pain and suffering to end their lifes at their request, subject to prescribed rigorous and transparent conditions and procedures.

  Unlike the 1999 recommendation, the new text has a much more pragmatic basis, recognising that end-of-life-decisions, including euthanasia, are a widely known fact of medical life. These practices, the text mentions, are forbidden in most Council of Europe member states: "There is thus a striking divergence between the law and what happens in practice. This gap must be reconciled if respect for the rule of law is to be maintained." At a more fundamentel level the text stipulates that "nobody has the right to impose on the terminally-ill and the dying the obligation to live out their life in unbearable suffering and anguish where they themselves have persistently expressed the wish to end it". This starting point differs substantially from the one formulated in the 1999 recommendation. The Parliamentary Assembly of the Council of Europe is to debate the new recommendation in January 2004. It remains to be seen whether the Assembly is willing to adopt the surprisingly favourable text of its Social, Health and Family Affairs Committee.

EUTHANASIA AND INTERNATIONAL LAW

  Some critics of euthanasia and assisted suicide have stipulated that physician-assisted death under all circumstances contravenes the "right to life" as protected by Art 2 of the European Convention of Human Rights. Article 2 provides:

    Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law.

  During the parliamentary debate regarding the Euthanasia Act the Dutch Government took the position that physician-assisted death at the persistent and well-considered request of the patient is not prohibited by Art 2 of the Convention. The government stated that the safeguards mentioned in the Act satisfy the requirements of Art 2 concerning the protection of life. Article 2 of the Convention played an important part in the "right-to-die" case decided by the European Court of Human Rights in April 2002. Pretty v United Kingdom (ECHR, 29 April 2002, Application No 2346/02) involved a right-to-die-claim from a severely ill English patient.17 Mrs Pretty wanted to die with the help of her husband (who was not a physician). As was expected, the European Court rejected the notion of a right to an assisted death. However, the court's judgment does not contain elements which lead to the conclusion that Euthanasia Acts as such are incompatible with the European Convention. The court explicitly declared that in Pretty it was not judging legislation as accepted in some European countries and underlined that it is a responsibility of national legislators to decide whether permissive legislation regarding physician-assisted death should be introduced. These considerations of the court do not exclude the possibility that euthanasia legislation, if carefully drafted and surrounded with appropriate safeguards, will pass the test of the European Convention. We will only know that definitely after the European Court has decided a case that is directly related to the Dutch or the Belgian legislation.

QUALITY IMPROVEMENT: THE SCEN-PROJECT

  Now that the Euthanasia Act has come into force, developments in The Netherlands are shifting in another direction. The focus is now on the improvement of the quality of medical decision-making in cases of euthanasia and assisted suicide. The most important element is to professionalise the ex ante screening. Until recently the physician who was considering acceding to a request for euthanasia or assisted suicide could ask any independent colleague to act as the consultant required by law. With the financial support of the Ministry of Health, the Royal Dutch Medical Association started the so-called SCEN-project (Support and Consultation regarding Euthanasia in The Netherlands). The SCEN-project is aimed at creating regional groups of trained and specialised physicians. These physicians are available to advise doctors who are confronted with a request for physician-assisted death and have questions about any related issue. Furthermore, these trained physicians act as the independent consultant required by law.18 The advantage of this is that the independent consultation is not carried out by any available physician, as was the case in previous years, but by a doctor with special knowledge and experience. In the area of general practioners, SCEN-groups have been formed in almost all regions of the country. It is intended that the SCEN-initiative will be introduced in other areas as well (such as medical specialists in hospitals and nursing home physicians). Evaluations of SCEN have shown a positive impact on the willingness of physicians to take the consultation requirement seriously and to report cases. The regional evaluation committees mentioned in the Euthanasia Act have repeatedly stated that, in cases in which the physician had consulted a SCEN-doctor, the quality and usefulness of the written report were much better than in other cases. This means that SCEN does not only have a positive influence on the ex ante screening, but on the ex post screening as well. Unfortunately, the future of the succesful SCEN-project is unclear. At the time this article was finalised (December 2003) the Dutch Government was heavily cutting health care expenditure. As of January 2004, the government will no longer finance the SCEN-project directly. It is unclear whether an alternative can be found that guarantees both the financing and the independence of the SCEN-doctor.

CONCLUSIONS

  The Dutch Euthanasia Act 2002 is the result of a lengthy development that started in the early 1970s. In The Netherlands physician-assisted death is broadly accepted, not only by physicians and policy-makers but by the general population as well. The Dutch are well aware of the risks attached to allowing physician-assisted death but feel that they have created a context in which the risks of abuse and arbitrariness are limited to an acceptable level. Of course, these risks cannot be completely eliminated. Every now and then a case occurs in which the physician has neglected one or more of the requirements mentioned in the law, but evidence for abuse on a larger scale is lacking. In almost every case so many persons are involved (the patient, close relatives, the acting physician, the independent consultant, other health care workers etc) that it is not easy to neglect the core requirements and get away with it. The fact, however, that this cannot be completely excluded has never been a reason in Dutch practice or politics to continue to forbid physician-assisted death under all circumstances. Such a policy would probably not result in the elimination of physician-assisted death. Otlowski had stated that the real choice is whether we seek to regulate and control the practice of physician-assisted death or whether it is left unregulated and unchecked. Furthermore, she favours the replacement of the prevailing policy of criminal prohibiton with a more open and honest approach: "Importantly, such an approach would reduce the risk of unacceptable practices and thereby afford greater protection to patients. It would also enhance the quality of medical decision-making in this area, encouraging professional discussion and guidance."19 At a more fundamental level the Dutch population positively values the opportunity for patients who are severely and hopelessly suffering to ask for physician-assisted death and to die with dignity. As long as this opportunity is not turned into a right, a large majority of Dutch physicians are willing to consider requests for physician-assisted death.

  Given the fact that euthanasia is based to a large extent on the universal feeling that a sick person should have a say about the amount of medical interference at the end of her or his life, it is understandable that the discussion on whether physician-assisted death should be allowed is emerging in other countries as well. Although typical Dutch circumstances (such as the emphasis on personal freedom, the social solidarity, the comprehensive health-care system, the quality of public discussion) may explain why the developments in The Netherlands occurred as they did, it is clearly an issue that also has relevance in other countries and jurisdictions. However, as the Dutch euthanasia practice is embedded in a specific and elaborate network of relations, standards and values, it is difficult to simply export this to other countries.20 The most distinctive characteristic of the Dutch situation is probably the broad support from the medical profession.21 Other countries do not necessarily have to go the same way, but they surely can learn from the Dutch experience.



 
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