Last summer three themes surfaced in the public discussion on end-of-life-decisions. These are: euthanasia in case of patients with (beginning) dementia, terminal sedation and euthanasia, and life termination of severely handicapped newborn babies. This article will briefly describe and comment on these discussions.

1. Euthanasia for patients with dementia.

In the first month of 2004 it became known that the public prosecutor and the minister of justice had decided not to prosecute a physician who assisted a patient with beginning dementia in committing suicide. It concerned a patient who had experienced a long dementia process of his father and his mother, and for whom the prospect of going through such a process of – in his eyes – loss of dignity, caused “unbearable suffering without prospect”. The physician accepted his claim of unbearable suffering and assisted in suicide. The public prosecutor considering the specific circumstances of this case, decided not to prosecute even though they opined that the physician should have fulfilled some additional requirements for careful procedure. After this decision became public, members of parliament asked questions of the minister of justice regarding this case. In the eyes of those MP’s (Members of Parliament) this decision meant an extension of accepted practise and jurisprudence of euthanasia, since the suffering was caused by a future condition that the patient foresaw and feared. But when that condition would be a reality he would no longer be aware of it in the sense that it would then cause unbearable suffering. The minister referred to the Supreme Court decision in the Chabot case (1994) that determined that psychic suffering could provide a justification for euthanasia or physician assisted suicide.

2. Terminal sedation.

This summer Van der Maas and Van der Wal et al published an article in Annals of Internal Medicine on the practice of terminal sedation. In fact the main data in this article was published before in the report on euthanasia practise in the Netherlands that came out in 2002. But the Dutch media apparently thought this data was new and reacted to it in the mass media. The main quantitative finding is that in between four and ten percent of all death cases physicians apply so called ‘terminal sedation’. Terminal sedation is defined as the administration of drugs to keep the patient in deep sedation or coma until death, without giving artificial nutrition or hydration. This normally is maintained until the patient dies. A discussion point in this context is whether the patients should or should not receive tube feeding. In a terminal stage this normally will not be done. But when the terminal sedation is applied in non terminal stages, and no fluids are applied, the distinction between terminal sedation and euthanasia becomes very thin if real at all. This point gained weight by anecdotal evidence in the media reporting that very recently Dutch physicians were applying such terminal sedation as a way of fulfilling a euthanasia request but without reporting it as euthanasia. The law establishes that euthanasia should be reported to the Regional Euthanasia Review Committee, whereas pain treatment or sedation need not be reported, so an important question in the public debate was whether physicians are applying so called terminal sedation as a substitute for euthanasia since this would save them reporting and the possibility of further questions or an investigation by the Public Prosecutor.

It is interesting to note that this discussion occurred just a few years after the debate on terminal sedation started in the Netherlands. The question for those rejecting euthanasia is whether it is an acceptable form of terminal care. For those accepting euthanasia under the established conditions, the question is whether terminal sedations is actually a concealed form of euthanasia that does not do justice to the request of the patient. Both sides agree that if terminal sedation is to be considered as a special form of terminal care it should be applied only in the very last stages of life (life expectancy of days, at most a week), in a very careful way since the titration of the doses of sedative is not so simple. Under those conditions terminal sedation should not be seen as a form of euthanasia. A point of discussion is whether it is recommendable that in a case of intended terminal sedation the attending physician should consult a colleague. On this topic members of parliament have also asked questions of the government. The under minister of health care has asked the Royal Dutch Medical Association to formulate a protocol for applying terminal sedation as distinct from a form of euthanasia.

3. Life termination of severely handicapped babies.

During the second half of the 1980’s and first half of the 1990’s the debate on the regulation of euthanasia (that is voluntary euthanasia in the Netherlands) went parallel with the discussion on life-ending actions of physicians on incompetent patients. A special group of these are severely ill or handicapped newborn babies. The first kind of regulation of life ending actions that resulted in a change of the law on the burial of the dead in 1994 deals with voluntary as well as non voluntary euthanasia. Voluntary and non voluntary euthanasia should be reported by different forms and be evaluated by justice. In fact, very few cases of non voluntary euthanasia were reported and brought to court. This did happen with two cases of the termination of life of a severely handicapped baby. Both cases were brought to a lower and a higher court and the physicians were aquitted by the four courts. In the further debate on the legislation of voluntary euthanasia in the second half of the nineties, voluntary euthanasia was distinguished from non voluntary euthanasia. However, in the course of the debate the cabinet expressed the intention to establish a national review committee for cases of euthanasia for incompetent patients. That committee would have the same function as their regional euthanasia review committees: to evaluate the reported cases before justice will decide whether it will further investigate a specific case of non voluntary euthanasia. The criteria would presumably be derived mainly from the four court decisions on the aformentioned babies. So far, however, the cabinet has not taken any steps to establish such a national review committee.

Recently the academic hospital in Groningen announced that it has formulated a protocol for dealing with cases of severely handicapped newborn babies whose parents ask for euthanasia. This has caused a renewed discussion on ending the lives of newborn babies, and on the best way of regulating and controlling it. Those favouring a regulation point out that it does happen in between twenty and one hundred cases annually without any legal control. However, whether a further legal regulation will lead to the reporting of all such cases is a big question in light of the fact that even after several years of a formal legislation of euthanasia just over half the number of cases are reported. Furthermore, it should be realised that in fact there is a legal regulation of non voluntary euthanasia, namely the article in the law on the burial of the dead that establishes that in cases of non voluntary euthanasia the physician must report such cases to the legal authorities, using a specific form designed for such cases. Even though the court decisions on the two babies indicate that there is little risk for physicians to be prosecuted after ending the life of a severely handicapped baby under certain conditions, very few, if any, such cases have been officially reported since then. The experience with the legal regulation of euthanasia has taught that acceptance by the legal authorities of a protocol which describes the process of decision making and performance of life terminating actions will fu

nction as pseudo-legalisation. This psuedo-legalisation will not guarantee that all cases will be reported, and therefore merely creates a false idea of control, and is seperate from the ethical objection to such regulation.

This topic has been discussed in parliament and the under minister of health has promised to present the cabinet position before the end of this year.

4. In conclusion

Considering the three debates it can be concluded that the legislation of euthanasia in the penal code has not put to rest the discussions in society on life ending actions of physicians. The attempt to get the practise of euthanasia into the open and under legal control has failed. Though part of this practise is now open to legal scrutiny, a significant part of the formally legalised practise is not, and there continues to be considerable grey area in both the medical care for the dying and the intentional killing of patients.

Of additional concern is the trend toward a continual broadening of the interpretation of the requirements for legal euthanasia. Currently this concerns patients with beginning dementia, and one of the most worrisome aspects is that just a few years after the legalisation of voluntary euthanasia the discussion on the presumed need for the regulation of non voluntary euthanasia has begun once again.

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Henk Jochemsen, Ph.D., is the director of the Lindeboom Institute, a centre for medical ethics located in the Nethlerands.