J Med Ethics: first published as 10.1136/jme.25.1.22 on 1 February 1999. Downloaded from Journal ofMedical Ethics 1999;25:22-24

Slippery slopes in flat countries - a response Johannes J M van Delden Utrecht University, the Netherlands

Abstract The reports that lead to these worries are not dis- In response to the paper by Keown andJochemsen in puted, by either Jochemsen and Keown, or by me. which the latest empirical data concerning Like them, I will use the term "euthanasia" in the and other end-of-life decisions in the Netherlands is Dutch way: euthanasia is the intentional ending of discussed, this paper discusses three points. a patient's life at the patient's explicit request. My The use ofeuthanasia in cases in which palliative point, however, is that I think a more interesting care was a viable alternative may be taken as proof analysis of the problem can be given than by ofa slippery slope. However, it could also be repeating the ominous and incriminating slippery interpreted as an indication ofa shift towards more slope metaphor. autonomy-based end-of-life decisions. The cases ofnon- are a Euthanasia and palliative care serious problem in the Netherlands and they are only The Netherlands are often criticised for their pre- rarelyjustifiable. However,they do not prove the sumed lack ofpalliative care. The existence ofonly existence ofa slippery slope. very few hospices in the Netherlands, for example, Persuading the physician to bring euthanasia cases

is often interpreted as proof of a neglect of pallia-copyright. to the knowledge ofthe authorities is a problem ofany tive care. Although much of this criticism is based euthanasia policy. The Dutch notification procedure on misunderstanding and much effort is made to has recendy been changed to reduce the underreporting improve palliative care at present, Jochemsen and ofcases. However, many questions remain. Keown are right when they say that the Nether- (7ournal ofMedical Ethics 1999;25:22-24) lands "have some way to go in the provision of Keywords: Euthanasia; autonomy (patient-); physician- adequate palliative care". Which is, of course, also assisted ; notification procedure true for many other countries. But what does thishttp://jme.bmj.com/ mean for a moral evaluation of euthanasia? By and large there appear to be three ways of Although the Netherlands is an extremely flat dealing with the issue of euthanasia. The first is to country, it appears to have slopes that can even be reject it on the grouds that it is forbidden by the skied down, when it comes to euthanasia. At least, principle of respect for life. Proponents of this that is what many authors who comment on the view often also claim that euthanasia is not neces-

Dutch experience with euthanasia want their sary at all. They believe that by paying sincere and on September 27, 2021 by guest. Protected readers to believe. This issue of the journal close attention to the person who requests eutha- contains such comment.' This paper provides yet nasia the "question behind the question" will another example of those comments in which dif- surely be revealed to be something other than a ferent types of end-of-life decisions are lumped request for death, and that with good palliative together. Rather than repeating my critique show- care extreme suffering need not remain unan- ing that this kind of reasoning is based on swered. In this view euthanasia and palliative care unacceptable simplifications,' I would like to try are incompatible. to further the discussion by trying to analyse the An alternative response to the euthanasia issue Dutch situation in response to the points put for- stresses the importance of compassion. From this ward by Jochemsen and Keown.' While doing so, point of view, respect for life is of paramount I will touch on some of the points made by importance as is good palliative care. Sometimes Cuperus-Bosma et al in their contribution to this however, supporters of this view admit that some- issue of the journal.' times illness and dying come with such suffering Jochemsen and Keown have three major worries: that life is reduced to pointless surviving. If all - the use of euthanasia even when doctors other palliative measures fail, then euthanasia may thought that palliative care was a viable alterna- be justified. The result ofthis view of euthanasia is tive; the medicalisation of the end oflife, since whether - the incidence of non-voluntary euthanasia; euthanasia is justifiable becomes largely a matter - the underreporting of the euthanasia cases. of medical discretion. J Med Ethics: first published as 10.1136/jme.25.1.22 on 1 February 1999. Downloaded from Van Delden 23

These two responses appear to differ primarily autonomy-based decisions, however, will lead to in their answer to the question: "Does intractable an increase in the prevalence of situations charac- excruciating suffering exist"? However, even terised by a loss of autonomy (such as in demen- palliative care specialists will state that, unfortu- tia or after a stroke). nately, it does. The real difference therefore, will This emerging sense that one does have a right be whether one allows the principle of respect for to die, means that more palliative care does not life to be overridden by other considerations in necessarily lead to a decreasing incidence of special circumstances. euthanasia. From a sociological point of view one Most proposals to regulate euthanasia follow may be tempted to interpret the shift towards the second view. This is also true for the official autonomy-based requests for euthanasia as a legal position in the Netherlands where a conflict byproduct of a liberal society, with its emphasis on of the physician's duties is the basis for not pros- self-government, control and rational choice. A ecuting him or her, not the granting of a patient's moral evaluation of this development, however, right. There is no in the Netherlands, will depend largely on one's normative views. nor is there an obligation for the physician to Jochemsen and Keown will presume that they can comply with the request of a competent patient to rest their case: their prediction of the slippery die even if certain conditions are met. From an slope has come true. Others will say that more official and legal point of view, therefore, euthana- emphasis on patient autonomy fits perfectly into sia is only tolerated as a last resort. the process ofemancipation of the patient that has The reality of the Dutch euthanasia practice, been going on since the beginning of the 1970s. however, seems to be developing in another direc- They might say that it is about time to start think- tion, with increasing emphasis on respect for ing about patient decisions concerning the end of patient autonomy. This could lead to a shift to a life, instead of about medical ones. third approach in which euthanasia is seen as a choice. Some patients do not want to live through copyright. suffering and decline even if pain can be control- The cases of non-voluntary euthanasia led. They want autonomously to decide about The cases of non-voluntary euthanasia, described how and when to die and they want their relatives both in the 1991 and the 1996 reports, created a to remember them as they were when they were new dimension in the Dutch euthanasia debate. more or less healthy. They want to step out of life Since the middle of the 1980s, this debate had starts on euthanasia and before the terminal phase really and they been focused assisted http://jme.bmj.com/ want a doctor to do the lethal work. with the explicit request of the patient as central This development is reflected in the data feature. This in part had been a deliberate produced in all major studies in the Netherlands. narrowing ofthe discussion because it was felt that The first nationwide study of end-of-life decisions consensus was greatest for these cases. The Dutch showed that pain hardly ever was the sole reason even changed their definition of euthanasia to for requesting euthanasia.4 In 1992 an independ- mean only the cases in which there was an explicit ent study by Van der Wal showed that in 56% of request by the patient. Thus, a possibly justifying on September 27, 2021 by guest. Protected cases of euthanasia, requests were made because feature (the request) was turned into a necessary patients thought suffering to be pointless and in condition. 46% because they feared the decline.5 And the The description of the non-voluntary cases has 1996 report showed that many patients asked for broadened the discussion again. But what does euthanasia to prevent more suffering.6 The their appearance in the reports mean? Does this research by Cuperus-Bosma et al, reported prove the slippery slope? For many years Dutch elsewhere in this issue,3 shows that the shift to commentators on euthanasia only talked about autonomy is not a matter ofpatients only, but also cases on request and non-voluntary cases only of members of the public prosecution. The inves- recently became known. Thus, the impression tigators showed that the presence or absence of an may have risen that the Dutch began with hasten- explicit request was the most important determi- ing the end of life on request and ended up with nant of the decision whether to hold an . non-voluntary cases. Life expectancy and type of suffering do play a This, however, is not necessarily true. We role but a less important one. simply do not know whether non-voluntary One may also predict (as an aside) that this euthanasia occurred less or more often in the past. emphasis on patient autonomy will lead to a What we do know is that the occurrence of change in the medical circumstances in euthana- non-voluntary euthanasia did not increase in the sia cases. At this moment cancer is by far the pre- Netherlands between 1991 and 1996, and also dominant diagnosis.4 6 The shift towards that its prevalence is much higher in another J Med Ethics: first published as 10.1136/jme.25.1.22 on 1 February 1999. Downloaded from 24 Slippery slopes inflat countries - a response country (Australia), which did not slide down the tees differ less in their assessment of cases. Their slope by tolerating euthanasia for years and years.7 strength is their opportunity to communicate with But even if they do not prove the existence of the reporting physician in a decriminalised setting the slippery slope, the non-voluntary euthanasia and, by so doing, influence practice. Uniformity cases do form a very serious problem. They are should not be their main concern. obviously not justified by the principle of respect for patient autonomy as in the third view Conclusion described above, and therefore can only be toler- You cannot do ethics until you know the facts. ated (if at all) in extreme situations where life ter- Therefore, the need for empirical research in eth- mination is really a last resort and non-voluntary ics is very clear. One of its tasks is to describe the euthanasia becomes "mercy-killing". It is very morally relevant facts. Another task may be to unlikely that this was the case in all cases verify empirical claims (as in the slippery slope described in the Dutch reports. argument and as in many consequentialist claims) and to provide insight into the effects of cultural Underreporting differences on certain practices. Thus, facts To accept euthanasia in an individual case is one provide the ethicist with the information she thing, to accept it on a public policy level is quite needs. However, facts will not settle a moral something else. It is often argued that proposals to debate. When it comes to the euthanasia issue legalise euthanasia can never contain absolute there is much to be learned from studies that the safeguards.8 I think this is true: there is no rule that the Dutch have performed. But the interpretation cannot (and will not) be broken. By the way, this of these facts remains largely dependent upon our goes for the prohibition of drunk-driving as well. moral views. Not vice versa. The question is whether this justifies a prohibition of euthanasia in an individual case. The Dutch Johannes J7M van Delden, MD, PhD, is Senior Fellow tried to have it both ways by creating a public of the Centre for Bioethics and Health Law, Utrechtcopyright. policy based on individual cases. The least one University, Utrecht, the Netherlands and Nursing can say is that this resulted in an unsatisfactory Home Physician in the Rosendael nursing home, situation of accepting and prohibiting at the same Utrecht. He is also a member ofone of the assessments time. This created uncertainty and unclarity both committees for euthanasia. Correspondence to the for patients and physicians and probably contrib- Centerfor Bioethics and Health Law, PO box 80105,

uted to some extent to the critical reports such as 3508 TC Utrecht, the Netherlands. http://jme.bmj.com/ the one commented upon here.' Persuading the physician to bring euthanasia References cases to the knowledge of the authorities is a 1 Jochemsen H, Keown J. Voluntary euthanasia under control?: Further empirical evidence from the Netherlands. Journal of problem for any euthanasia policy. The Dutch Medical Ethics 1999;25:16-21. notification procedure helped to raise the notifica- 2 Delden JJM van, Pijnenborg L, Maas PJ van der. Dances with data. Bioethics 1993;7:323-9. tion rate to 41% in 1995.6 As is briefly discussed in 3 Cuperus-Bosma JM, Wal G van der, Looman CWN, Maas PJ the van der. Assessment of physician-assisted death by members of the paper by Cuperus-Bosma,' government on September 27, 2021 by guest. Protected the public prosecution in the Netherlands. J'ournal of Medical has tried to diminish further the number of unre- Ethics 1999;25:8-15. ported cases by developing a new notification 4 Maas PJ van der, Delden JJM van, Pijnenborg L. Euthanasia and other medical decisions concerning the end oflife. Amsterdam: procedure, in which much of the assessment is Elsevier, 1992. done "outside of" the legal system. Since Novem- 5 Wal G van der. Eijk JThM van, Spreeuwenberg C. Euthanasia and . II. Do Dutch family doctors act ber 1, 1998, five regional multidisciplinary assess- prudently? Family Practice 1992;9:135-40. ment committees have to advise the public 6 Wal G van der, Maas PJ van der. Euthanasie en andere medische beslissingen rond het levenseinde. Den Haag: SDU uitgevers, prosecutor in all reported cases ofeuthanasia. The 1996: 57. effect of this change in procedure is not clear yet. 7 Kuhse H, Singer P, Baume P, Clark M, Rickard M. End-of-life decisions in Australian medical practice. Medical Journal of Cuperus-Bosma et al hope that reducing the Australia 1997;166:191-6. role of the public prosecution will lead to fewer 8 Miles S, Pappas D, Koepp R. Considerations of safeguards proposed in laws and guidelines to legalize assisted suicide. In: differences in assessment and more legal equality. Weir Robert F, ed. Physician-assisted suicide. Bloomington: Indi- However, one may ask why would these commit- ana University Press, 1997.