Establishing specialized health services for professional consultation in euthanasia: experiences in the Netherlands and Belgium

While physician-assisted suicide is regulated in Oregon, Washington, the Netherlands, and Luxembourg and is legally performed in Switzerland since 1990 [1–3], there are only three countries in the world where euthanasia is legal: the Netherlands and Belgium adopted a law in 2002 [4, 5] and Luxembourg became the third country to do so on March 16^th 2009 [6]. All three laws stipulate substantive and procedural criteria that must be met for euthanasia to be legally performed. The substantive criteria require, among other things, that the patient's request must be voluntary, well-considered, repeated, and not the result of any external pressure; that the patient must be in a medically futile state of constant and unbearable physical or psychological suffering which cannot be alleviated, and is the result of a serious and incurable condition caused by illness or accident; that the physician must fully inform the patient about his/her health condition and prospects (diagnosis and prognosis), and that physician and patient must arrive at the conclusion that there is no reasonable prospect of improvement in the patient's situation. The procedural criteria consist of mandatory notification of the euthanasia case to the official review committee [7], and consultation of a colleague by the attending physician, hereafter called the consultant, who is independent or impartial from both the patient and the attending physician [4, 5], and competent to judge the patient's condition. This consultant must read the medical file and examine the patient in order to judge whether the substantive criteria have been met, i.e. judge the serious and incurable nature of the condition, ascertain that the patient's physical or psychological suffering is constant, unbearable, and without prospect of improvement, and that the patient's request was voluntary, well-considered, and repeated (in Belgium and Luxembourg the law only prescribes this in patients not expected to die in the near future). The Dutch law also stipulates that the consultant should conclude that there are no reasonable alternatives [5]. The consultant must make a written report regarding his or her conclusions.

Consultation in the case of a euthanasia request, as defined by the laws on euthanasia, is very different from an informal discussion between physicians which might occur in other kinds of end-of-life decision-making. Given the seriousness and irreversibility of euthanasia, the consultant has to determine whether the substantive legal requirements of due care are met, and the judgment of the attending physician was made with due care. The consultation of a second physician in euthanasia requests is intended to build a control mechanism into the procedure and prevent unwarranted euthanasia cases. It is also intended to monitor and safeguard the quality of the practice of euthanasia.

The laws in all three countries stipulate that the consulted physician must be independent, impartial and competent to judge the pathology of the patient. However, the consultant is also expected to judge aspects such as existential suffering and feelings of hopelessness, which are more inherent to the final stage of life than to the patient's pathology [8–10]. Additional skills therefore seem warranted for a consultant. Ideally, the consultant is someone who does not a priori object to euthanasia, and has a certain amount of experience with or knowledge of end-of-life care and/or euthanasia. Finding such an independent consultant may be difficult for a physician confronted with a euthanasia request. In this context initiatives were taken, in the Netherlands and in Belgium, to establish specialized services to provide such consultants. While the Dutch and the Belgian laws [11] and the notification procedures of euthanasia in both countries have been extensively described and compared elsewhere [7], no studies have described the function and functioning of these specialized consultant health services within the context of a law on euthanasia. This paper aims to describe such specialized health services as established in the Netherlands ('Support and Consultation on Euthanasia in the Netherlands', i.e. SCEN) [12] and in Belgium ('Life End Information Forum', i.e. LEIF) [13]. LEIF is a Flemish initiative and hence in principle only available in the Dutch-speaking part of Belgium; in the French-speaking part a similar, albeit less elaborate initiative has been developed.

The SCEN and LEIF projects will be described and compared in terms of their development, aims, tasks, functioning and organisation.

We studied and compared relevant documents concerning SCEN and LEIF. To obtain an overview of the development, aims, tasks, functioning and organisation of SCEN, the evaluation report about the implementation and effects of SCEN was studied [14] as well as the results of the annual written inventory of activities of SCEN physicians from 2004 to 2006 [15–17]. Additionally, the training book for SCEN physicians [18], the checklist used by SCEN to draw up the consultation report, the protocol used as a guideline for the consultation procedure [19] and the website of the Royal Dutch Medical Association [20] were explored as information sources. Information on the Life End Information Forum in Flanders was acquired through the LEIF website [21], the bye-laws, the LEIF magazine [22], publications concerning LEIF [13, 23, 24] and the training folders the physicians receive while undergoing training. Furthermore, because there is relatively less written information available about LEIF than about SCEN, an open interview was conducted with the director and training moderator of LEIF to complement the collected information. The persons consulted for information about SCEN and LEIF were notified that their contribution would be used for a comparing paper and they consented to this.

Our study is the first to describe and compare how consultation services in cases of a euthanasia request have been established in the Netherlands and Belgium. In both countries, these consultation services are delivered by specially trained physicians who can be consulted in cases of a request for euthanasia and who offer support and information about the subject. The context in which the two organisations were founded, as well as the way they are organised and regulated, is different in each country: by providing information on all end-of-life care matters the Belgian Life End Information Forum seems to have a broader consultation role than the Dutch Support and Consultation in Euthanasia.

A methodological limitation of this study is that the description of both organisations is based on documents and therefore reflects the theoretical situation but not necessarily the situation in real terms.

One important difference between the consultation organisations in Belgium and the Netherlands is that the Belgian LEIF has a broader focus: its physicians can be consulted not only in cases of euthanasia requests but for all end-of-life issues. The context in which the legislation was developed in Belgium may account for this; in Belgium there was much more controversy than in the Netherlands and the legislature (government) wanted to put the focus on a wider range of options at the end of life. This may explain why a law optimizing the accessibility of palliative care and a law on patient rights emphasizing the right of the patient to choose the care they receive, were passed almost simultaneously with the euthanasia law [30, 31]. In this context the initiators of LEIF, who have a broad background in palliative care, aimed to create a health provision not linked solely to euthanasia. The emphasis on palliative care is not so pronounced with SCEN, although SCEN physicians must consider other palliative options when doing a consultation. As the line between euthanasia and other end-of-life decisions is not always clear to attending physicians and their patients, it can be beneficial to have a service which provides consultation not only in the context of euthanasia but also concerning all medical aspects of the end of life. On the other hand, this requires consultants to have a wider area of expertise.

Another difference between the Dutch SCEN and the Belgian LEIF is that SCEN is more highly-regulated. A historical explanation for this can be found in differences in the development of the euthanasia laws and the fact that, as opposed to Belgium, euthanasia had been tolerated in the Netherlands long before the law was enacted. SCEN also has a longer history than LEIF. Another reason may be that the Royal Dutch Medical Society, which organises SCEN, is controlled and strongly supported financially by the Dutch government, whereas LEIF has no controlling body and little funding. Also a general cultural inclination to formalize practices in the Netherlands may explain why SCEN is more regulated [32].

The heavier regulation of SCEN may provide more of a guarantee that its consultations take place according to best-practice criteria. The more informal contact procedures of LEIF (e.g. that the attending physician may make direct contact with those in the network) could on the other hand have the advantage of making the service more approachable. If implemented in other countries, such a provision is probably best designed to fit in with the prevailing cultural characteristics.

Several similarities between SCEN and LEIF can be noted. Both organisations were founded to improve (the practice of) consultation in euthanasia requests by specifically training physicians for that purpose. These physicians also support and inform their colleagues on euthanasia. The amount of training time and the guidelines for consultation that are thought during this training are similar in both countries. Furthermore, both associations organise additional meetings to discuss concrete cases. SCEN as well as LEIF have a controlling board consisting of physicians, experts and academics to continuously evaluate the organisations' functioning.

Both The Netherlands and Belgium have been careful to set in place firm and substantial procedural due care requirements in order to safeguard good practice and it can be assumed that other countries intending to legalize euthanasia would do the same. However, the practical implications of legalization are not always covered by legislation. For instance, once euthanasia is legalized, what should a physician do when confronted with a request for euthanasia, and whom should they consult? The creation of specialized service for a priori consultation in euthanasia cases can play an important role. It helps physicians to relatively easily consult a competent second physician when they are confronted with a euthanasia request. Such a service may also guarantee more compliance with the due care requirements and hence function as an additional control mechanism. Research has already demonstrated such services to be of great importance to the careful performance of euthanasia [14]. For instance, the criteria for good consultation (e.g. independence from patient and attending physician, seeing the patient, writing a report) were more often met in consultations with SCEN physicians than with other physicians, and a strong relationship was found between a consultation with SCEN and notification of euthanasia [33]. It is important, however, that the physicians who are part of such services are fully trained to be able to judge the conditions for euthanasia and guarantee a good practice. Both SCEN and LEIF put emphasis on knowledge of the law and of palliative care, and on communication with the patient and the attending physician.

The evaluation report of the euthanasia law showed that SCEN physicians had been involved in 89% of all notified euthanasia cases in the Netherlands [33]. The notification reports in Belgium and a first assessment of LEIF activities [34] indicate that LEIF physicians have acted as a second physician in 54% of reported euthanasia cases in Flanders [35]. This shows the important involvement of this service in euthanasia. SCEN and LEIF can be an example for countries that have recently legalized euthanasia, like Luxembourg, or are discussing legalization. These countries can learn from the similarities and differences between both initiatives in organising such a service according to their law, health system and culture.

In conclusion, this study shows that similar consultation services were developed in the Netherlands (SCEN) and in Belgium (LEIF) to provide an accessible, independent and qualified second physician in cases of a request for euthanasia. Though some important differences exist between the initiatives relating to the history and culture of the two countries, they are both intended to safeguard the practice of euthanasia. As both SCEN and LEIF play an important role in the performance of euthanasia in their respective countries, it is possible to conclude that, in countries where legislation on physician-assisted death is being considered, the development of such a service is warranted, parallel to or even incorporated into the relevant laws.