House of Lords - Assisted Dying for the Terminally Ill Bill

Select Committee on Assisted Dying for the Terminally Ill Bill First Report

Chapter 5: Overseas Experience

142. This chapter sets out the evidence which we received when we visited the US State of Oregon, The Netherlands and Switzerland. It includes also a summary of the position in Belgium.

Oregon

143. The Oregon Death with Dignity Act (ODDA) was passed in 1994. It resulted from a Citizens' Initiative, which means that it was proposed by individuals (rather than by the State Legislature) and was voted on by the State electorate. The process was therefore somewhat similar to that of a referendum in the United Kingdom. The ODDA, when enacted in 1994, secured only a narrow majority, being supported by 51% of votes cast. It did not however come into operation for another three years, being held up by a court injunction through which the State Legislature sought to give the voters of Oregon a chance to reconsider their verdict. The ODDA was passed for a second time in 1997 by 60% of votes. It has therefore been in operation for some seven years.

144. The ODDA is similar to Lord Joffe's Bill in that it applies only to people who have reached the age of majority and have been diagnosed as being terminally ill. It differs however in that it does not include a requirement for unbearable suffering and—more significantly—it offers the successful applicant only assisted suicide. This, we were told by Dr Katrina Hedberg of the Oregon Department of Human Services (ODHS),[53] "has been defined as taking an oral medication… The only thing that is allowed is a prescription, and in most cases it is for barbiturates that people take themselves orally and swallow" (Q 562). Dr Hedberg felt that the reason for this restriction "was in part because it was perceived that they did not necessarily want a doctor doing something to a patient. That would be an active role that the doctor has, and they thought it might be accepted more if it was patient self-administered" (Q 566).

145. Ms Barbara Glidewell, Director of the Department of Patient Relations at the Oregon Health Sciences University (OHSU), considered that "in the US we are quite a way away in our community dialogue from discussing active euthanasia or injected medication to end life. We are decades away from that" (Q 652). The ODDA, she believed, "fits for us… It is objective and it is supportive of those individuals who choose this" (Q 648). Dr Susan Tolle, of the OHSU Center for Ethics in Health Care, took a similar view. Asked whether other states were considering similar legislation, she answered that some had come close but rejected it. "They parted from it," said Dr Tolle, "but in most cases they [the proposals] included euthanasia as well as physician-assisted suicide" (Q 728).

146. Dr Nick Gideonse, a general practitioner in Oregon, felt that the continuing prohibition of euthanasia was "a political barrier" which served to allay concerns about volition and subtle pressures. "The fact that the patient self-administers in a way that is not easy to do, drinking ounces of a bitter liquid, provides a final piece of clear evidence that this is completely volitional and self-administered". Doctors were also less uncomfortable because "the physician's role is just one step further back" (Q 849). Ms Barbara Coombs Lee, of Compassion for Dying, a voluntary organisation which supports people who opt to take advantage of the ODDA, agreed. "Having that last firewall, if you will, of having very clear self-administration, in this society, in this state, at this time is important to people, to have that reassurance that it really is a volitional act that a patient must take. The trade-offs are minimal" (Q 849).

147. Assisting suicide outside the terms of the ODDA remains a crime in Oregon. But those who qualify and avail themselves of the Act's provisions are not regarded as having committed suicide. We were told by Dr Melvin Kohn of the ODHS that "by statute these deaths are not called suicide, they are not listed as such on the death certificate and they do not have the ramifications for insurance reimbursement and other kinds of issues that suicides have" (Q 565). Nor, we were told, are autopsies required because deaths under the terms of the ODDA are regarded as "predicted deaths" (Q 957).

148. According to Dr Hedberg, public opinion in Oregon was fairly relaxed after seven years experience of the ODDA. "It is not much of a debate any more because people have seen this has happened in this state but… we are still in double digits. Last year there were 42 out of 30,000 deaths. We have a large number of deaths in our state and very few people participating. It is not that controversial in Oregon, both because lots of people are not participating and because there have not been any really egregious events" (Q 619). Dr Gideonse told us that "it seems to have been assimilated into the social fabric" (Q 839). Dr Robert Richardson, Director of the Kaiser Permanente Ethics Service, said that implementation of the law had showed "that this is not physicians taking charge, this is patients who have taken charge" (Q 855).

149. Nonetheless there remained people who were unhappy about the Act. Ms Glidewell observed that "there are some physicians who are passionately opposed" (Q 630) and that federal and religious health care organisations had declined to offer services falling within the terms of the ODDA (Q 670). Barbara Coombs Lee believed that "there are 20-30 per cent of people whose opinions really are based on their own ethical standards and their own religious beliefs, and those are not moveable. However, there are 30-40 per cent of the population in the middle who are willing to be persuaded, who have fears about abuse and coercion and whether the safeguards actually work and things like that and are persuaded by the Oregon data" (Q 855).

150. The ODHS has the responsibility for recording the rate of uptake of the law, for checking that the basic requirements of the law are being observed and for reporting any discrepancies to the Oregon Board of Medical Examiners (OBME)[54]. It is the responsibility of the OBME, as the regulatory body for the Oregon medical profession, to investigate any apparent irregularities and to decide whether, and if so what, action should be taken on them. The ODHS's role is simply to record what is happening, which includes compiling an annual report giving the number of lethal prescriptions issued and the number actually ingested. The monitoring does not begin, however, until the stage where a patient has been confirmed to be terminally ill (defined as having a life expectancy of six months or less), has made two written requests (separated by a 15-day interval) for assistance with suicide (as laid down in the statute) and has been issued with a prescription for lethal medication. We were told by Dr Richard Leman, a medical epidemiologist at the ODHS, that "through to the end of 2003 there were 265 prescriptions actually written and 117 people who chose to take them" (Q 577). There has been some increase in the numbers of people who take the prescribed medication—from 16 in 1998 to 42 in 2003, though the number for 2004 was expected to show a fall (Q 558). According to Mr David Hopkins of the Center for Health Statistics, "males and females are equally likely to use the medication. Asians are about three times more likely than whites. College graduates, educated folks, are about seven times more likely than those who have high school degrees. Urban folks are a bit more likely than those east of The Cascades, which is a very rural area, to use the medication" (Q 559).

151. According to Dr Gideonse, "one in six dying patients in Oregon talk with their families about their options and whether they might want to use the Act, one in fifty begin the eligibility process but only one in a thousand eventually use the Act to hasten their death" (Q 839). Many people, we were told, take the prescription but do not use it. They keep it as an "insurance policy", to be taken if their suffering becomes more than they can bear.

152. We asked whether the figures of reported deaths under the terms of the ODDA could be relied on as accurate. Dr Hedberg told us that "physicians in the State of Oregon have a vested interest. If they follow the steps and report them, they are protected under the law; but, if they carry out actions outside the law, then they are assisting suicide and that is not part of this. We do get pretty good data because, if anything else, it is insurance for physicians to report" (Q 617). Ann Jackson, Executive Director of the Oregon Hospice Association, agreed: "Oregon is a very, very small state and we have hospices all over, and they have big mouths! I think if there were any abuses in the law, we would hear of it" (Q 834). We asked also about any medical complications in those cases where the prescribed medication had been ingested. The OBME had "not heard of any complications of any significance or any complications period. It may be true, but we have not heard them" (Q 929). The OBME had investigated four cases, which appeared to be concerned with procedural aspects, such as a missing witness signature, but had no evidence that serious breaches of the law might be taking place.

153. On the other hand, some witnesses who appeared before us believed that the law was being abused. Dr William Toffler, a general practitioner and a professor at OHSU, said that "every case that we know about, and it is close to a dozen cases now, has serious problems", among which was "patients who have a known history of depression, only one out of 20 of the patients in the last year got referred for formal psychiatric evaluation" (Q 949). Dr Greg Hamilton, a psychiatrist, told us that medical complications occurred in 1520 per cent of cases but that these were "not in the records" (Q 955). There was no investigation of deaths under the terms of the ODDA. Ms Karen Bell, a nurse and a director of a Portland hospice programme, told us that "in Oregon, if a patient is terminally ill and dies, one of my hospice nurses can call the medical examiner and the coroner, and all it takes is for the hospice nurse to say 'This patient has died'. It is not a medical examiner case, there is no autopsy required or anything because it is considered a predicted death" (Q 957). It appeared however that none of these perceived abuses had been reported formally to the OBME for investigation.

154. Oregon, we were told, had good end-of-life care with high enrolment in hospice programmes. There had been significant growth in such services during the last 10-15 years. Dr Tolle told us that in the early 1990s "we had been struggling… to build in-patient palliative care programmes, to strengthen our education on pain management, to expand the use of hospice… Now we are holding 11 major regional conferences, all but one of which has major or total elements of end-of-life education, none of which this year have anything to do with assisted suicide. We have gone from one palliative care programme… to twelve in this State" (Q 684). Dr Tolle cautioned against reading into this growth of end-of-life care a cause-and-effect connection with the enactment of the ODDA (Q 686). "There was," she said, "improvement under way but the speed of improvement was able to be harnessed. We made a deliberate effort to harness it" (Q 721). Dr Tolle did suggest however that there might be a different connection—namely, that many people had voted for the ODDA because of a tragic experience which a loved one had had in end-of-life care. "In some ways," said Dr Tolle, "it [the Act] was a vote of no-confidence about some aspects of end-of-life care in Oregon" (Q 689).

155. Hospice care has grown substantially in Oregon as part of the palliative care package. Ann Jackson told us that, "when I started this job in 1988, 2,000 people used hospice in the State of Oregon, and we estimate this was up to 15,000 in 2003, which is 50% of all those who die in the State of Oregon" (Q 807). Ms Jackson also told us that 93% of those who availed themselves of the ODDA were hospice patients (Q 786). "As far as assisted suicide is concerned," said Ms Jackson, "our position now is that it no longer matters whether we believe it is right or wrong, it is the law of our State and people who are eligible for hospice and eligible for the Death with Dignity Act are one and the same. No Oregon hospice would turn away someone who wanted to use assisted suicide" (Q 786). Ms Jackson also told us that "very few Oregonians use the Death with Dignity Act. Hospice has been offered as the primary explanation for that. People do not need to use assisted suicide because they are in pain or because their needs are not being met in other ways… Oregon has hospice throughout the state… Every Oregonian, in even the smallest community, has access to hospice care" (Q 793).

156. Two observations must, however, be made. First, Oregon has 51 "hospice programmes", which means that there are 51 programmes for offering hospice care rather than that there are 51 hospices. Dr Tolle told us that nearly 90% of those who die in hospice care in Oregon die in their own homes (Q 686). Ann Jackson told us that "hospice in the United States is provided primarily in the patient's home, especially in Oregon. Two per cent of our patients die at an in-patient facility or in hospital" (Q 797). Terminally ill patients are able to call on visiting hospice nurses at any time, though those needing 24-hour care would be encouraged to go to an in-patient unit. "We do not have all of the support staff," said Barbara Farmer, Director of Home Care and manager of Hopewell House Hospice in Portland, "to be able to provide all of our patients with 24-hour round-the-clock care at their bedside. We can do it in short snippets or we have agencies that we work with that can provide the 24-hour care" (Q 804).

157. The second observation is that, unlike in the United Kingdom, hospices in Oregon are for "comfort" care only. As Barbara Glidewell put it, "it pretty much is a one-way ticket opting out into hospice. The hospice teams are paid governmentally for treatments that are comfort-only. You would not come back to hospital for a CT scan because it would not be paid for" (Q 623). Ms Glidewell gave as an example a hospice patient suffering from pneumonia who "wanted antibiotics for comfort only, not for curative recovery, the hospice group in all likelihood would provide the medication for comfort only but without an exception. Nearly all of our patients who go in… complete a Physician Order for Life-Sustaining Treatment, a POLST form, where they say that they would want comfort measures only, do not resuscitate, no antibiotics except for comfort, probably no artificial hydration or nutrition" (Q 625). Ms Jackson confirmed that entering a hospice involved waiving the right to curative treatment (Q 818). It appears that the reasons for this "difficult disconnect between the curative focus and the comfort focus" (Q 623) are largely financial. To qualify under the Medicare system, a terminally ill patient must gain access to a hospice programme, which itself depends on a prognosis of six months or less of life remaining (QQ 1087-1090).

158. Not surprisingly therefore a linkage has developed between the Act and the hospice movement. Ms Jennifer Traeger, a clinical social worker, told us that "one of the requirements [to qualify under the ODDA] is that the physician has to say that you have six months prognosis, so by virtue of being a hospice patient you have met those criteria. Often physicians will encourage that hospice support as well just to make sure that all of their needs are being met and that the person is not choosing aided dying for some other reason" (Q 805). Ms Jackson also observed that "it is the physician who has the responsibility for writing the prescription. It is the hospice generally who has the responsibility for caring for the patient and making sure their psychosocial needs and their practical needs are being addressed" (Q 794). Such hospice support can extend to pointing patients desiring assisted suicide towards organizations, such as Compassion in Dying, to help them in the event that their doctors decline to participate (Q 794).

159. We were anxious to know how medical practitioners in Oregon viewed the Act. Mr Jim Kronenberg, Chief Operating Officer of the Oregon Medical Association[55], gave us a very helpful briefing on this. He explained that, though the American Medical Association (AMA) had opposed the Act, the Oregon Medical Association (OMA) "neither supported nor opposed the AMA's position and we neither supported nor opposed the ballot measure" (Q 1022). Mr Kronenberg's summary of the attitudes of physicians is worth quoting at some length;

"I would say there is a small group of physicians… who are adamantly opposed to this measure… There is another relatively small group of physicians… who feel that this is not only appropriate but medically and ethically the right thing to do in certain cases. It is my judgement that the great majority of physicians in this State… perhaps 85% of them are relatively ambivalent about the issue, in many cases because it does not affect them. If you are a radiologist, for example, or an anaesthesiologist… it is something you will never be faced with. It gets down to family practitioners, internists, those physicians whom we look to for our care on a regular basis and then some of the medical and surgical sub-specialities—certainly oncology would be one—who are more likely in the course of their career to be faced with the dilemma of what to do… My experience is that they do not know what they are going to do until they are faced with the circumstance. Also it is my experience that in the great majority of cases physicians who choose to move ahead do it on the basis of a long relationship with the patient. Typically that would be one's primary care physician, whom they have known and worked with for a long time where they feel they know a great deal about the patient, not only from a medical standpoint but from a behavioural standpoint… Some physicians, even under those circumstances, choose not to participate" (Q 1022).

160. Mr Kronenberg added however that "in my personal experience, the majority of physicians whom I have counselled… who have chosen to talk to me about it, the majority of them chose not to. I think that the majority of those chose to refer to someone else" (Q 1043). Asked whether doctors' attitudes would have been different if the ODDA had included provision for voluntary euthanasia as well as assisted suicide, he believed that in that event the OMA's position "would be the same as it was in 1970, that we opposed it on ethical and moral grounds. It is a very great leap. I think that physicians would feel the same way, that there is an extraordinary difference… in providing someone with the means to end their life and actually ending it" (Q 1048).

161. Dr Richardson, a pulmonologist and critical care physician, felt that "a modest majority of physicians support the right to do some sort of physician-assisted death, although a much smaller proportion are willing to directly participate" (Q 849). Dr Elizabeth Goy, of the Department of Psychiatry at OHSU, considered that doctors were "very uncomfortable" with the experience of being asked to assist with suicide and that "sometimes they are overwhelmed by the impact of this, which is contrary to what they normally do" (QQ 766-7). Ms Farmer observed that physicians "were more willing to refer to the hospice because we were more comfortable with the language" (Q 807).

162. Dr Hedberg told us that "there are some physicians who have come out very vocally as being advocates or proponents of this who have clearly prescribed for many people. I think the majority are physicians who have prescribed once or twice for their own individual patients" (Q 594). Dr Hedberg drew attention also to differences in approach among prescribing doctors. "There are some physicians who look at this and say: 'The patient is asking for a prescription, I will write the piece of paper and they can either fill it or not, but it is giving the patient complete control as to whether they fill it and end up taking it, etc'. We have other physicians who say: 'If the patient is going to make this decision, I want to be involved throughout. I am not going to write the prescription until the patient says to me: 'Doctor, now I really want to take it', and then I am going to be there with them and their family to assist'" (Q 567).

163. What we were told about the typical character traits of those who avail themselves of the ODDA reflects what we had heard from others in the United Kingdom. Ms Glidewell saw them as "pragmatic, matter-of-fact persons who have always been in control of their lives and ordered their lives and want control. I see it over and over as the reason why people say that they want control of their dying process and want to avert having to be cared for in a way that is offensive to them… It is crystal clear to them that they want to name the day, and when they are finished, when life has served them, and enough is enough, they are done" (Q 643). Dr Goy, referring to studies she had carried out, told us that "most folks said they find being cared for to be intolerable and they have had a lifetime of needing to be responsible and have learned, one way or another, not to depend on others but to be self-sufficient" (Q 753). They tended, she said, to regard religion—though not necessarily spirituality—of little importance and to be "self-confident heading into a great void of nothingness, with no recrimination or retribution for making this choice: they are quite comfortable with it. Typically they do not have a concept of Heaven or the Great Beyond" (Q 774).

164. One of the consequences of a law which permits doctors to prescribe and pharmacists to issue lethal medications is that control of these latter is lost. Though some patients may take the medication when it is issued to them, others do not: they keep it as an "insurance policy". We encountered some, though not great, concern among our witnesses about this release into the community of lethal substances which could find their way into the hands of others than those for whom they were prescribed. Ms Glidewell told us that "we do lose control of that medication once it is out of our hands. Often we say we can hold the medication for them until they call for it or hold the prescription but not fill it until such time when they are ready, but there is no guarantee they are going to take it then, and you have this lethal dose sitting in the medicine cabinet wondering what they are going to do with it" (Q 735). The ODHS assumed that, as most people who take their own lives under the terms of the ODDA are participating in a hospice programme, the hospice took care of unused medication. But, added Dr Hedberg, we do not have a way to track, if there was a big bottle sitting in somebody's medicine cabinet and they died, whether somebody else chose to use it" (Q 591).

165. We conclude our summary of the situation in Oregon with an interesting observation from one of our witnesses, Dr Peter Rasmussen, an oncologist. He contrasted the situation in other parts of the United States—where (he claimed) patients were often given aggressive treatment for terminal conditions, where death was often viewed as a defeat and where in consequence death often occurred in hospital intensive care units—with that which obtained on Oregon, where (as recorded above) some 50% of those who die are in hospice programmes and therefore receiving "comfort-only" care. Now, said Dr Rasmussen, "we have more home deaths in Oregon than in almost any other place in the nation. Our populace has been there. Our populace has stayed up nights caring for their loved ones as they were dying, whereas in other parts of the country their experience of the death of a loved one is from a waiting room in an intensive care unit" (Q 855). Given the high level of hospice-in-the-home care in Oregon, this strikes us as a relevant observation, though Dr Rasmussen's conclusion—that "that may be applicable for the United Kingdom, because I think you have more home deaths and you are probably closer to Oregon's experience" (Q 855)—is perhaps open to question.

The Netherlands

166. The history of assisted suicide and voluntary euthanasia in The Netherlands is very different from that in Oregon. Though a law legalising these practices has only recently been passed by the Dutch parliament[56], the criminal and supreme courts of the country had since 1973 adjudicated on a number of cases where defendants had invoked—usually successfully—the defence of necessity against a charge of murder. This defence was explained to us by Mr Jakob Kohnstamm, of the NVVE[57], as being "the situation where you have an ethical or moral dilemma between, on the one hand, someone's request which you feel is an honest and honourable request and, on the other, something which is prohibited by law, [so that] in certain circumstances you are acquitted. It is not that it is not criminal: it remains a criminal act, but you will not go to prison for it" (Q 1547).

167. As a result, the 2002 Act was effectively a codification of existing practices which had been built up on a basis of case law. According to Dr Rob Jonquiere, also of the NVVE, this had been "a great advantage of the Dutch situation. After the legalisation was completed, the practice did not change greatly". What did change, said Dr Jonquiere, was that assisted suicide and voluntary euthanasia now became "a legalised option for doctors and patients, but in terms of the process it did not change greatly" (Q 1541). The purpose of moving from case law to statute law, we were told, was to remove the uncertainties, for doctors and patients, which had surrounded earlier adjudication of cases brought before the courts.

168. There is a key difference between the 2002 Dutch law and the 1997 law in Oregon: Dutch law permits voluntary euthanasia as well as assisted suicide. We were told that the medical profession in Holland makes no moral or ethical distinction between the two. Dr Johann Legemaate, of the KNMG (Royal Dutch Medical Association), said that "many doctors prefer euthanasia for practical and clinical reasons, because when it is assisted suicide you hand over the medication to the patient and he has to take it himself. It may have side effects which will lead to the doctor acting anyway. For that reason most doctors prefer euthanasia" (Q 1233). This was, he said, notwithstanding guidelines from the KNMG to the effect that assisted suicide was preferable to voluntary euthanasia "in the psychological sense for the doctor and in the sense that it emphasizes a little more the responsibility of the patient" (Q 1234).

169. Euthanasia is defined in The Netherlands in a highly specific way. In Dutch law, the term "euthanasia" includes also what we term in this report "assisted suicide". On the other hand, it specifically excludes the ending of a person's life without his or her request. In other words, the Dutch do not recognize the existence of involuntary as well as voluntary euthanasia: while the latter is now permissible in law, the former is regarded as murder[58] (Q 1247). The Dutch definition of euthanasia also excludes specifically the withholding or withdrawal of treatment, whether or not at the patient's request, and the administration of pain relief by a physician with the possible side-effect—but not the intention—of hastening death. In this respect the Dutch definition mirrors that which obtains in the United Kingdom.

170. The 2002 law is not limited to adults. Nor does an applicant for euthanasia have to be terminally ill. As Dr Legemaate put it, "the main basis is hopeless and unbearable suffering; it has nothing to do with your life expectancy". He added however that "in actual practice I think that our law is very close to your Assisted Dying Bill, in the sense that 95% or 98% of the cases… are patients within the last days or weeks of their life… But we do not exclude the rather exceptional situations in which, for instance, somebody who is 55 and has a very severe but incurable mental illness—which relates to a situation of hopeless and unbearable suffering—asks for assisted suicide. We have had these cases every now and then. Not many, but they are not excluded" (Q 1285).

171. Approximately 16 million people live in The Netherlands, of who around 140,000 die every year. We were told that some 9,700 requests for euthanasia are made annually. About 3,800 of these actually receive euthanasia, of which some 300 are assisted suicides. Euthanasia therefore accounts for around 2.5% and assisted suicide 0.2% of all deaths in The Netherlands. In addition to these, there are about 1,000 deaths a year (0.7% of all deaths) where physicians end a patient's life without an explicit request[59].

172. Under subsection 2 of the 2002 Act a Dutch physician who carries out euthanasia is exempt from prosecution if he fulfils a number of specified criteria of "due care" and notifies the coroner. There are six such criteria. The patient must have made a voluntary and well-considered request to die; his suffering must be lasting and unbearable; he must have been informed about his medical condition and prognosis; both the doctor and the patient must be satisfied that there is no other reasonable solution to the situation; the doctor must consult at least one other (and independent) physician, who must visit the patient and give his written opinion of whether the requirements of due care have been met; and, finally, the doctor must terminate the patient's life with due medical care. The "second opinion" is now increasingly provided by a team of SCEN (Support Consultation Euthanasia Network) doctors. We examine this system in more detail below.

173. Once the patient has died, it is the doctor's responsibility to report the death to the coroner and to complete a report. The coroner visits the place of death, performs an external medical examination of the patient and notifies the public prosecutor and the civil registrar[60]. He then compiles his own report, noting the cause of death, and forwards this, together with the doctor's report and, if necessary, the patient's medical notes, to one of five regional assessment committees.

174. The committees were set up under the 2002 law. We were able to discuss their operation with the committee covering The Hague. Its chairman, Mr Jan Suyver, told us that "the committees investigate each reported case and assess whether or not the criteria are met with. It is black or white, not grey. However, in its written explanation on its judgement the committee is entitled to mention all the relevant circumstances and dilemmas… If the committee finds all the criteria fulfilled, then the case is over—end of the story. There are no further investigations, no prosecution. If not, the committee must also notify the public prosecution service and the health inspectorate[61]. The committees do not give advice on whether or not to prosecute or to bring the case before a disciplinary tribunal. Those are the exclusive decision powers of the prosecution service and the health inspectorate" (Q 1439). The committees do not have a role in monitoring euthanasia practices. Dr Gerrit Kimsma, the physician member of the committee, told us that they "have data on the variety in numbers [of euthanasias performed] between physicians, but we do not keep track" (Q 1455). There is thus no routine procedure which would show whether some physicians are performing significantly more euthanasias than others, though it would be possible, we were told, to "put it a query" and extract this information (Q 1457).

175. The role of the regional committees is therefore to assess whether the "due care" requirements have been met. In doing so, we were told by Dr Kimsma, "we must be sure there has been no manipulation, no pressure or undue influence, and that the request is well considered. It must have been expressed and dealt with several times, sometimes years before the actual date of the euthanasia or assisted suicide. The wishes preferably must be supported in writing. This is not exactly a legal condition, but it certainly helps and makes the assessment simpler. The assessment of unbearable suffering without the prospect of improvement is one of the difficult issues of the committee's assessment. What does "unbearable" mean? It has a very subjective patient-related side, but it must always be a joint conclusion. In order for a physician to come to the conclusion that euthanasia is an option, there should be a joint, shared process of decision-making, where the physician also has to be very much in conformity with the wishes of the patient" (Q 1441). Commenting on the SCEN system for obtaining second opinions, Dr Kimsma said: "It is now legally possible that a physician without any training can do a consultation, but what we see in the committee is that those consultations on paper are inferior. The consultations of the SCEN, the specifically trained physicians, are much more adequate and much superior" (Q 1441). Dr Kimsma added that "there is an absolute condition that [euthanasia] can only be done by the treating physician. It cannot be any other physician. We do not want to advertise 'euthanasia tourism'. What we insist on is that it only takes place within a meaningful medical relationship. That is an absolute condition" (Q 1441).

176. We have referred above to the SCEN project, under which doctors can receive training in the operation of the law and in the problems with which general practitioners can be faced when a patient requests euthanasia and can volunteer to be available to provide second-opinion consultations in specific cases as they arise. According to Dr Legemaate, SCEN "aimed at professionalising the independent consulting physician". Dr Tjomme de Graas, a nursing home physician who is also a palliative care specialist and a SCEN doctor, told us that "SCEN physicians are a special breed, with special training for a very delicate task". There were, he said, three reasons for the launching of the project. The first was to give doctors confronted with a euthanasia request the opportunity to make contact with an independent and experienced colleague who could provide medical and emotional support to the doctor's thought processes. "Because of our training we can, with the physician, draw the complete context of the request for euthanasia, hopefully also to clarify some aspects that may be overlooked in such stressful and extraordinary situations" (Q 1712). The second was to carry out a second-opinion consultation, as required by the law; and the third was to provide encouragement to doctors who carry out euthanasia to report their actions. "Because of our training," said Dr de Graas, "and also because of our experience and the countrywide availability of SCEN physicians, this guarantees a uniform and independent view and… control of the procedure" (Q 1712).

177. This view of the SCEN project was echoed by others. Dr van Coevorden, a GP and SCEN physician, believed that SCEN had the advantage of "not only checking if things are going exactly according to the law but also being of personal assistance to a doctor who may have problems during this process" (Q 1349). Dr Maria van den Muijsenburgh, a GP and palliative care specialist, felt that SCEN provided helpful "backing against pressure" on doctors from relatives (QQ 1482-3). The project, said Dr Legemaate, had so far been focused on GPs, because that is where most requests for euthanasia are both made and carried out; but it is now being extended to physicians in hospitals and nursing homes. In a year or two there would be "100 per cent coverage of all euthanasia situations in this country" (Q 1252).

178. Having set the Dutch scene, we turn now to consider some of the specific issues which we found. The first is the disclosure that there are around 1,000 instances every year in The Netherlands of a patient's life being ended by a doctor without an explicit request. (See Paragraph 171). Dr Legemaate's written evidence on behalf of KNMG stated that "this happens mostly with patients suffering from cancer in the last days or hours of their life"[62]. Dr van Coevorden, on the other hand, told us (Q 1310) that "it involves ending life without request, but it is outside the scope of this discussion because it involves newborn children, with defects and so on"; and this view was echoed by Mr Jacob Kohnstamm, Chairman of NVVE, who said "they are, for example, in neonatology, severely handicapped new-born babies—problems that are mainly in the medical sphere" (Q 1607). However, we received yet another account from Ms Irene Keizer, a Senior Policy Officer of the Dutch Ministry of Health, Welfare and Sport. "There are some cases," she told us, "in which it is not careful euthanasia, but in most cases are people who are not able to make a request because they are not seen as able to make a request—for instance, people who are suffering from a psychiatric disease or people who are in a coma. Also newborn babies are not capable of making a request" (Q 1420). When asked what proportions of the total might consist of people in these various categories, Ms Keizer thought that about half of them were people not capable of making a request (e.g. they were in a coma), "25% are people who could have made a request but did not (so we are wondering about those), 15% are newborn babies, and 10% are other categories" (Q 1422).

179. Yet another perspective was given to us by Professor Gerrit van der Wal, Head of the Department of Public Health at the EMGO Institute in Amsterdam. "Roughly speaking," said Professor van der Wal, "in about half of all those cases there has been some kind of discussion before the patient became incompetent… but not an explicit request for euthanasia. Almost all patients—in our last study 100% of all patients—were incompetent at the moment of decision… It is about patients who are mostly very ill, dying and seen to be suffering very much, by vomiting their stools, having very bad bedsores, severe dyspnoea and suchlike. As we also know from qualitative studies, doctors feel that they have their back against the wall; that the family and nurses are asking him or her to end this suffering and this unbearable state of life; and then they decide to hasten the end of life. Whether or not this is very explicit is not that clear. For example, we found that the drugs used in these kinds of cases are mostly opioids, as used for intense pain and symptom treatment, and not neuromuscular relaxants as used in euthanasia. We are neutral researchers, but we do not like these cases… We hoped that they would decrease in number, but it has not happened" (Q 1699). Professor van der Wal said that, "so far as we can see, there is no association between the development in jurisprudence and law and life-ending cases without a request" (Q 1683).

180. The second issue which we addressed with several of our witnesses is the rate of reporting by doctors to the authorities of euthanasias which they have carried out. We will not examine here in detail the somewhat complex methodology by which the latest figure (54% of all euthanasias being reported to the authorities) is arrived at. The questions on which we have focused are: how reliable is the quoted 54% reporting rate? And why do doctors not report?

181. Dr Agnes van der Heide, a senior researcher at the Erasmus Institute, Rotterdam, believed that the wording of the research questionnaire which was sent to doctors was insufficiently precise and that this had resulted in an inadvertent over-stating of the number of euthanasia cases. "We asked physicians," she said, "the following question: Did you provide in this case a drug with the explicit aim of hastening the patient's death? And, if you did so, did you do this at the explicit request of the patient? If both questions were answered positively with 'Yes', then we classify this case as a case of euthanasia. This is meant to be an objective classification scheme for euthanasia, but at the same time it means that our definition is not always similar to the physician's definition. When the physician answers both questions 'Yes', it is not that in all cases the physician himself defines the case as one of euthanasia" (Q 1630). Dr Jon Bos, a surgical oncologist, believed that, if such misunderstandings were removed, the reporting rate might rise to around 85%. On this basis, though Dr Bos did not adduce any hard evidence to support his 85% figure, some 600 instances of actual euthanasia might go unreported in The Netherlands annually.

182. We were unclear why, given that one of the conditions of immunity from prosecution under the 2002 law is that cases of euthanasia are reported, some doctors did not do so. Dr Bregje Onwuteaka-Philipsen, an Associate Professor at the Free University of Amsterdam, believed there were three reasons. "There are people who still do not want the administrative bother of it, or the idea that you report it. There are people who think that you should not report it, either because they feel that it is not really euthanasia or because it is something between the doctor and the patient. It is also possible that there are people who perhaps doubt whether the case would go through easily—whether they have exactly fulfilled all the requirements" (Q 1626). Others gave a similar picture—see for example QQ 1337, 1409, 1434 and 1462. Dr Bos felt that, if his 15% figure of unreported cases were valid, "those 15% may be the doctors who are afraid to report because they fear prosecution or whatever… Sometimes the rules may prevent you from helping your patient; going by the rules might sometimes mean letting the patient down. That could also be the case in some of those 15%" (Q 1337).

183. The third issue which we examined during our visit to The Netherlands was the state of palliative care in that country and its relationship, if any, with euthanasia. We were told that there had been a substantial investment in palliative care, as a result of which palliative care departments and regional specialist teams had been created throughout the country; and that more resources were being devoted to raising palliative care standards in nursing homes and care homes (Q 1362). "The underlying principles of the policy," said Dr Cilie Alberda of the Ministry of Health, Welfare and Sport, "are integration in a regular health care system, improving access to and availability of palliative care. The approach is generalist… This means that all GPs and nurses must have been trained to give palliative care" (Q 1362). What this means is that palliative care is not recognized in The Netherlands as a clinical speciality. Dr Alberda said that this generalist-only approach was adopted because most people in Holland die at home: there were specialists in the regional consultation teams, from whom GPs and nurses could, if necessary, obtain advice (QQ 1367-69). According to Dr Ben Zylicz, a hospice medical director, the result was that hospitals in general were "totally devoid of input from palliative care specialists" (Q 1515).

184. Dr van Coevorden felt that there had been "an enormous boom" in the past few years in palliative care training and in hospice care, which he felt had been stimulated by the law on euthanasia (Q 1304). Accepting that palliative care had been at a low level, he believed that in the last five years it had come up to a very high level (Q 1305). Dr Zylicz told us that "many GPs now, knowing the basics of palliative care, can better resist the pressure from the family if they can offer something instead of euthanasia. We have also seen the number of euthanasia requests in hospices really decrease in the last years" (Q 1484). Patients entering hospices who request euthanasia were increasingly withdrawing those requests when palliative care was provided (Q 1510). On the other hand, said Professor Henk Jochemsen, a medical ethicist, the number of euthanasia requests in the population at large was not decreasing (Q 1510).

185. Having said that palliative care in Holland had come up to a high level, Dr van Corvoerden also told us, when explaining later in his evidence why people in The Netherlands asked for euthanasia, that "84% of them have pain; 70% have extreme fatigue; 50% have gastrointestinal complaints and loss of weight; 70% have coughing, dyspnoea or suffocation; almost 70% feel extremely weak. Each of these symptoms or combination of symptoms may lead to a situation that, for these patients, is unbearable suffering and unacceptable, and that is basically the reason why they ask their GP to have their life ended" (Q 1325). Dr van den Muijsenburgh and Dr Zylicz also told us that, whereas there had been an increase in funding in the late 1990s to accompany discussion in parliament of euthanasia legislation, that funding had now ceased (Q 1491). And Professor Jochemsen suggested that the funding which had taken place had not produced a growth in the quality (as distinct from the quantity) of palliative care. "Since there was a lot of money at the end of the 1990s and the beginning of the century," he said, "many institutions which were providing nursing care in general were opening palliative care units, because they got more money for the patients. The number of palliative care units has therefore increased considerably, but these people are mostly just continuing what they were doing—in the sense that there is no real specialist understanding, knowledge and practice of palliative care… So the number of places where palliative care is offered does not say very much about the quality of palliative care in general in The Netherlands" (Q 1536).

186. During our visit to The Netherlands we visited Sint Jacob's Hospice in Amsterdam. This is a nursing home and a home for the elderly, in which 450 people are currently living. It has wards for medical and psycho-geriatric care and for rehabilitation, plus a stroke unit; and five years ago it opened a palliative care unit (Q 1711). Effectively, therefore, St Jacob's provides a hospice facility within a broader establishment for care of the elderly.

187. Though St Jacob's has grown out of a religious foundation, it has not set its face against euthanasia. We were told however that, though the question of euthanasia has been raised on a number of occasions within the hospice, it has only taken place on one occasion in the last five years (Q 1711). The reason given for this was that the quality of palliative care in nursing homes was now "at a very reasonable level" (Q 1728) and, perhaps more important, that there was a difference in character between those who died in nursing homes and those who died at home. According to Dr Roeli Dijkman, President of the Dutch Society of Nursing Home Physicians, "patients who suffer from terminal illnesses make the request for euthanasia before they go to the nursing home. In principle, the patients who ask for euthanasia have a vision of dying and losing their dignity" (Q 1742). He told us also that "when you have a terminal illness at home and you do not want to die by fading away, with palliative care, you decide to have euthanasia at home. Most euthanasias are by general practitioners" (Q 1728). Dr Dijkman's view is consistent with what we were told by Dr Onwuteaka-Philipsen (Q 1668)—that, while euthanasia accounts for some 2.7% of deaths overall in The Netherlands, it accounts for 5% of deaths under the age of 65, 3.3% of deaths between the ages of 65 and 79 and 1.4% of deaths over the age of 80.

188. We were shown an example of a "euthanasia statement" which the NVVE offered to its members[63]. The object of such statements is to help people who so wish to state in advance that they would not wish to continue to live if at a future date they should find themselves in specified conditions. As such, these statements could be said to have similar objectives to what we would term "advance directives" in regard to such matters as resuscitation. The example of the statement which we were shown requests a physician, if the signatory should be in a state of "unbearable suffering" and/or "a condition which provides little or no prospect of a return to what is for me a reasonable and dignified existence," "to fulfil my death wish by allowing me to take substances under his or her supervision—or, if I am no longer able to do so, to administer to me substances—that will bring about a mild death". The statement lists a number of conditions, which signatories are invited to tick as they regard appropriate and which might be included under the headings of "unbearable suffering" or "reasonable and dignified existence". These include, in addition to such states as "a life with serious, permanent paralysis", other conditions such as "being blind or virtually blind and/or deaf and/or virtually deaf which make it impossible or virtually impossible for me to perform what are for me worthwhile activities such as reading, writing, watching television, listening to music and doing manual work or handicrafts" and "having a severe impairment or continuing degeneration of my mental faculties, as a result of which I… must be confined because I would otherwise go wandering".

189. Commenting on the statements, Dr Jonquiere of NVVE said that "we try to help our members to formulate what in their view is unbearable. The identification of what is unbearable is for the patient. They are the person who says 'This suffering, for me, is unbearable'. This helps them to formulate what is unbearable. But 'unbearable' alone is not sufficient to come to the conclusion that euthanasia is the solution. There you need medical expertise in terms of the hopelessness of the suffering. It is those two people—the doctor and the patient—who come together, to compare and discuss, deal and wheel—whatever you may call it—about the unbearability and hopelessness" (Q 1557). Dr Jonquiere made clear to us that the presence of such a statement does not mean that euthanasia will follow automatically if any of the specified conditions should develop; it is simply a request, and the physician must satisfy himself that there is "unbearable suffering" also (Q 1566). Asked about what might happen in the event of a signatory becoming unconscious as well as having reached one of the specified conditions, he replied that, "when a patient is unconscious, it is something which in practice is presently considered not to be compatible with suffering, and so not a reason for euthanasia" (Q 1558).

190. Finally, we sought to form a view of how legalised euthanasia is regarded by Dutch doctors and Dutch society as a whole. Ms Keizer of the Ministry of Health, Welfare and Sport said that "we have asked doctors what they think about the law and whether they think that it is an improvement. They think that the procedure improved after the law came into force. The review committees are working fast and are giving clear judgements. Doctors also expect that there will be more transparency and that the willingness to report will improve" (Q 1396). Dr Legemaate, for the KNMG, told us that, "a large part of the medical profession finds it acceptable that there is, in our society, the possibility of euthanasia. 20% to 25%... are opposed, mostly for religious reasons and also on some non-religious reasons—for instance that it is not compatible with their medical oath or the medical profession" (Q 1237). For society as a whole, according to Dr Legemaate, "there has been a kind of increasing acceptance of doing euthanasia, which I think incorporates a certain change of opinion about the moral aspects and how you balance that" (Q 1250). And Dr Onwuteaka-Philipsen told us that opinion polls suggested that "92% think that it is good that a doctor will no longer be prosecuted for euthanasia, if all the requirements are met. 91% think there should be control on euthanasia" (Q 1659).

191. On the other hand, Dr van den Muijsenburgh reported that in research which she herself had carried out, while doctors were willing and capable of administering intense and very personal palliative care that met the needs of their patients, there was a considerable variation among physicians in regard to the incidence of euthanasia. While most doctors, she said, were supportive of their patients, "there were… doctors who were very willing to commit euthanasia—doctors who themselves thought 'Suffering is useless'—and more than half of their patients die by euthanasia" (Q 1537). And Dr Zylicz cautioned against acceptance at face value of opinion polls which suggested that there was a high level of public support for euthanasia. The result, he felt, depended on the question which was asked (Q 1502). Dr Zylicz agreed, however, with the statement that there had been no slippery slope and that some patients, whose physical symptoms appeared in the eyes of their doctors to be properly controlled, persisted with requests for euthanasia (Q 1508).

Switzerland

192. The legal position of assisted suicide and voluntary euthanasia is different in Switzerland from that which obtains in both Oregon and The Netherlands, though it is closer to the former than to the latter. Article 114 of the Swiss Penal Code makes the killing of a human being "upon the latter's earnest and urgent request" a criminal offence punishable by imprisonment. Voluntary euthanasia is therefore illegal. Article 115, however, prohibits incitement to and assistance with suicide if the guilty party acts from self-serving ends but exempts those who act from entirely honourable motives, such as assisting suicide in order to help bring an end to suffering. The situation in Switzerland differs also from the position in Oregon and The Netherlands in that assistance with suicide is not regarded as the exclusive province of doctors. Anyone may legally give such assistance from non-selfish motives. Where lethal medication is required, a doctor's prescription is needed for this to be obtained, though this requirement exists in order to ensure control of dangerous drugs and not because of a view that assistance with suicide is a function of medicine.

193. Another difference in the Swiss situation is the involvement of voluntary organisations. There are three main organisations in Switzerland involved in assisting people with suicide—EXIT, which has a membership of some 50,000 and which caters for the German- and Italian-speaking regions of the country; AMD, a parallel (and smaller) body dealing with the French-speaking areas; and DIGNITAS, a recently-founded break-away group from EXIT with a membership of some 4,500, which provides assistance with suicide to foreign nationals travelling to Switzerland for the purpose as well as to Swiss citizens. The active help which these organisations provide to applicants, including medical examinations and facilities for suicide to take place, is a distinguishing feature of assisted suicide in Switzerland.

194. Switzerland is a highly federal country, with day-to-day government and administration devolved to the cantons. The laws governing assisted suicide and voluntary euthanasia, however, are federal in nature and apply to Switzerland as a whole, though their application is a cantonal responsibility. These laws, which were written in 1937 and introduced in 1942, were not enacted specifically with terminally ill people in mind but were rather a codification of the legal systems which had existed previously in the cantons. The application of assisted suicide as means of dealing with the suffering of terminally ill people was a dimension which, we were told, emerged in the 1980s.

195. The Swiss Penal Code does not regulate assistance with suicide otherwise than to prescribe that such action should not be self-serving. We were told by the Federal Ministry of Justice that the definition of "self-serving ends" in assisting suicide had been clarified by successive tribunals and included such situations as that of a person who gave such assistance "to satisfy his own material or emotional needs… the possibility of eliminating some major problem for the family, or other motives such as gaining an inheritance, relieving himself of the burden of supporting the individual… or eliminating a person he hated" (Q 2135).

196. The Swiss authorities appear to have concerns about some aspects of the present law, in particular regarding assistance with suicide being given to foreigners coming to Switzerland for the purpose—for the Swiss Penal Code, unlike its counterparts in Oregon and The Netherlands, does not restrict legal assistance with suicide to persons living in Switzerland. Dr Andreas Brunner, Attorney-General of the Canton of Zurich, was concerned about situations where "a person comes today and dies the same day" (Q 2269), since this inevitably precluded the building-up of a proper relationship between a terminally ill person who is assisted to take his or her own life and the doctor who assesses the case. There have been a number of proposals put forward in the Swiss Parliament to combat such "death tourism" (Q 2127); and, though each of these has so far been either rejected or abandoned, we were told by Mr Bernardo Stadelmann of the Federal Ministry of Justice that the Swiss authorities were aware of the problem and that the Government was trying "to ascertain whether there is a danger of the situation in Switzerland being exploited and, if so, [it would] take appropriate steps to remedy the situation" (Q 2127).

197. Because the Swiss Penal Code does not link assisted suicide specifically with terminal illness or suffering as the result of ill health, it does not specify any medical conditions under which assistance with suicide may be given: it requires simply that the motivation of the person giving assistance shall not stem from self-serving motives. However, the Swiss Academy of Medical Sciences (SAMS) has drawn up a set of medical ethical principles governing end-of-life care, as part of which guidelines have been established for use in situations in which doctors may be asked to assist a patient to end his or her life. The SAMS guidelines prescribe that "physician-assisted suicide is not part of medical practice" (Q 2178). They go on to state that, while a doctor's primary role is to alleviate symptoms and to support the patient, there may be situations in which the patient asks for help in committing suicide and persists with this wish. In this dilemma, between established medical practice and support for his patient's wishes, the doctor may either refuse to comply with the patient's request or accede to the request provided that he is satisfied that three conditions have been met—that the patient's state of health makes it clear that he or she is nearing the end of life; that alternative possibilities have been discussed and, if desired by the patient, implemented; and that the patient who requests help to end his or her life is capable, free from external pressure and has thought through his or her decision. The Academy recommends also that, in such situations, a third person should verify that the third condition has been met.

198. In fact, the majority of assisted suicides which take place in Switzerland are not directly supervised by doctors. Most people who are assisted to commit suicide are members of one or another of the country's "suicide organisations". The development of these organisations was explained to us by Dr Brunner. He told us that, "when the law was made, we did not have any suicide organisations… In the late 1980s the first suicide organisation was established. That was EXIT… Now we have five or six organisations and some splinter organisations too. Then, in about 2000, suicides of people from England started" (Q 2252).

199. The increase in the number of suicide organisations seems to be matched by an increase in the number of assisted suicides in Switzerland. According to Mr Stadelmann, up to 1993 EXIT assisted about 30 cases a year. "Since 1993 we know that there have been about 100 cases a year" (Q 2128). The figures for DIGNITAS, he said, followed a similar trend. "They declared three cases in 2000, 37 or 38 cases in 2001, about 55 cases in 2002… and 91 cases in 2003" (Q 2128).

200. Because the role of suicide organisations is such a unique feature of assisted suicide in Switzerland, we took evidence from two of them—EXIT and DIGNITAS—during our visit to the country. These two organisations have quite different internal structures. EXIT is managed by an annually-elected board of five people, who are supported by an ethics commission (which considers the handling of difficult cases) and a compliance commission (which ensures that the association's rules are followed). DIGNITAS on the other hand is a much smaller body, controlled by a two-man board and with a doctor and lawyer to give supporting advice.

201. The team of witnesses whom we met from EXIT emphasised that they took their work conscientiously. According to Dr Klaus Hotz, EXIT operates "conditions for assisted suicide [which] are much higher than the penal law… We must firstly have a poor medical prognosis, unbearable pain or substantial impairment. The full discretion of the person committing suicide is the second part" (Q 2401). There is, however, no requirement on the part of EXIT that the patient will otherwise die a natural death within a specific time frame. "For us," said Dr Hotz, "the autonomy of the person is in a way our first point of view. We are rather liberal on this medical prognosis" (Q 2404). And, according to Dr Giancarlo Zucco, there has been "a change of philosophy because in the beginning EXIT was only prepared to assist people who were terminally ill or had very strong pains or were disabled, for instance… Recently it has been decided that we would also assist elderly people who simply decide that they do not see any meaning in their life any more". (Q 2428)

202. If the existence of organisations which give assistance with suicide is an unusual feature of the Swiss scene, DIGNITAS represents an unusual feature within these organisations by offering assistance with suicide for foreign nationals travelling to Switzerland for the purpose. DIGNITAS has members in 52 countries, of which United Kingdom membership (approximately 560 people) is second only to German. To join, members must pay a registration fee of 100 Swiss francs and a minimum annual subscription of 50 Swiss francs. Members may, in addition to supporting the aims of the organisation, apply for assistance with suicide for themselves. Since December 2004 DIGNITAS has levied a fee in such cases of 1000 Swiss francs to cover the preparations necessary for an assisted suicide and a further fee of 1000 francs for arranging burial, if the organisation is asked to do that.

203. A member who wishes for help with ending his or her life must request this in writing from DIGNITAS and send the organisation a copy of his or her medical records. These latter are considered by one of the doctors associated with DIGNITAS who, if he believes that the applicant's circumstances would enable him to write a prescription for lethal medication and on the understanding that he will be able at some point to assess him or her in person, agrees to the applicant being given a "provisional green light" (Q 2326). We were told by Mr Ludwig Minelli, Director General of DIGNITAS, that "about 80% of the members who have got the provisional green light never call again" but that, for those who persist with their requests, the organisation prefers that they come twice to Switzerland, once to see the physician and again to receive assistance with ending their lives. (Q 2326). He added, however, that in many cases—for example, where applicants were seriously ill or severely disabled—it was not possible to insist on two visits and one visit, for confirmation of the Swiss doctor's assessment, was considered sufficient (Q 2326).

204. On arrival for the final or only visit, an applicant is met at the airport or railway station by a representative of DIGNITAS and taken to an apartment in Zurich which the organisation rents for the purpose. The DIGNITAS representative remains with the applicant throughout the visit, to ensure that his or her needs are met (including, if there has been no prior visit, a consultation with a doctor to confirm that the application meets the required criteria for assisted suicide), to oversee the necessary preparations (including the mixing of the lethal medication in a glass of water) and to make clear to the applicant that he or she is free at any time to discontinue the process. If the applicant wishes to go ahead, the medication is placed within his or her reach. When it has been ingested and death has occurred, the death is reported to the authorities. The DIGNITAS representative receives a fee for his or her services of 500 Swiss francs.

205. The Swiss Penal Code very clearly states that direct, active euthanasia is illegal. In practice this means that the final act has to be taken by the patient. According to Dr Zucco of EXIT, "we prepare the solution that the patient has to drink and we put it on the table and he or she is supposed to take it into his or her hands. This is the normal way" (Q 2413). However, there are cases where, because of a disability, the patient is unable to perform this action. In these situations the medication is intravenously infused. This means that the patient's final act is an extremely small part of the process—for example, in some cases "there is a small wheel that they have to push" (Q 2417). In the past some concern has been raised about these situations by the authorities. They felt that, as an infusion required more preparation, the patient might be less likely to decide not to proceed. However, according to Dr Zucco, "now it has been accepted because what we do is keep asking until the last second, 'Do you really want it?'. We try to make it easy for the patient to say no" (Q 2421). In these cases, Dr Hotz told us, the organisations are careful to make sure that they could not be accused of breaking the law: "we try in these cases to have two people, that the assistant from EXIT has a witness, and there have also been cases where a video has been made to prove afterwards that the person opened the valve, which is of course a delicate action" (Q 2419).

206. We found at DIGNITAS a similar trend to that at EXIT for making assistance with suicide more widely available. Mr Minelli told us that he would like to be able to help mentally ill people to commit suicide. "Until now," he said, "we have been very reluctant to have mentally ill people because there is one procedure in the Canton of Aargau where this question has been raised. We had last week a hearing at the court… If the decision is favourable, then I think we will have more possibilities to help mentally ill people" (Q 2371).

207. As indicated above, there are concerns in Switzerland about the activities of these organisations. Dr Christoph Rehmann-Sutter, President of the National Advisory Commission on Biomedical Ethics, referred to "the impossibility of the state having legal oversight of the practice of the organisations" (Q 2183). He felt that perhaps they "do not put enough weight on the lengthy process of evaluation and assessment of the person or on giving support to the person to make him or her change their mind" (Q 2183). Dr Brunner believed that the suicide organisations should be more tightly regulated by the authorities. At present, he said, "there is no surveillance; they are associations without any state control. I think that should change" (Q 2290).

208. In Dr Brunner's opinion a number of additional duties should be placed on the organisations to allow the authorities to regulate them more effectively. For example, while the organisations already publish annual reports of their activities, Dr Brunner felt that they should be legally required to disclose all their accounts as well, thereby making it easier for the authorities to satisfy themselves that no financial profit was being derived from assistance with suicide (a key consideration given the insistence of Swiss law on non-self-serving motives). He felt also that it was important to ensure that the organisations were staffed by "a good approved selection of people… because there is a danger from so-called angels of death" (Q 2263).

Belgium

209. The Belgian Act on Euthanasia was passed on 28 May 2002. It defines euthanasia as "intentionally terminating life by someone other than the person concerned at the latter's request"[64]. As such, it is similar to the Dutch definition and equates to what we have referred to in our report as voluntary euthanasia, though to avoid confusion in this section we use the Belgian terminology.

210. The Act differs from similar laws in Oregon, The Netherlands and Switzerland in that it legalises only euthanasia, not assistance with suicide. The conditions laid down include that the patient should have attained the age of majority, that the request should be "voluntary, well-considered and repeated" and that the patient should be "in a futile medical condition of constant and unbearable physical or mental suffering that cannot be alleviated"[65]. The Act requires the assessing doctor to satisfy himself of, inter alia, "the durable nature" of the patient's request for euthanasia. "To this end," it prescribes, "the physician has several conversations with the patient spread out over a reasonable period of time"[66]. The doctor must obtain a second medical opinion and, if the request satisfies all the criteria laid down, must "allow at least a month between the patient's written request and the act of euthanasia"[67].

211. Acts of euthanasia must be reported to the authorities. The documentation for each case is reviewed by a Federal Control and Evaluation Commission (FCEC), which either confirms the physician's immunity from prosecution (on the grounds that the paperwork submitted indicates compliance with the law) or refers the case to the public prosecutor.

212. The first report of the FCEC, covering the 15-month period from 23 September 2002 to 31 December 2003 recorded 259 cases of euthanasia, an average of 17 cases per month. More than 80% of these acts of euthanasia took place in Dutch-speaking Flanders (where some 60% of the population lives) and less than 20% in French-speaking Wallonia (where about 40% of the population lives). The 259 cases were reported by 143 different physicians. In 2004, 347 cases of euthanasia were reported, an average of 29 cases per month. The Commission's first report did not report any instances of non-compliance with the law and did not see a need for new legislative initiatives.

213. The Act provides for patients requesting euthanasia to be made aware of the option of palliative care, though this is not seen as a filter—i.e. a process through which applicants must go in order to see to what extent their needs can be met through good quality palliative care before deciding to have their lives ended. Legislation on palliative care was introduced at the same time as the euthanasia law, though it is written in more general terms prescribing that every Belgian should have access to proper palliative care. According to the FCEC's first report, in 101 of the 259 reported cases of euthanasia (40%) in 2002/3 palliative care teams were consulted by attending physicians.

In Conclusion

214. We would like to record our sincere thanks both to the British Embassy staff in Seattle (for the visit to Oregon), The Hague and Berne who put considerable efforts into arranging visit programmes for us and briefing us on the demographic and cultural contexts of the countries we were visiting and to the organisations and individual witnesses in these places who took the time and trouble to meet us and to give oral evidence to support our inquiry.

53 Equivalent to the United Kingdom Department of Health Back

54 Equivalent to the United Kingdom General Medical Council Back

55 Equivalent to the British Medical Association Back

56 The Termination of Life on Request and Assisted Suicide (Review Procedures) Act 2002 Back

57 The Dutch equivalent of the United Kingdom Voluntary Euthanasia Society Back

58 For these reasons, when discussing the situation in The Netherlands we use hereafter the term 'euthanasia' to mean voluntary euthanasia only and to include assisted suicide as well as action taken by a doctor directly to end a patients life. Back

59 See Volume II: Evidence, HL Paper 86-II, Page 393 Back

60 Equivalent to the United Kingdom Registrar of Births, Marriages and Deaths Back

61 Equivalent of the United Kingdom General Medical Council Back

62 See Volume II: Evidence, HL Paper 86-II, Page 393 Back