 My name is Holly Fernandez Lynch. I'm the executive director of the Petrie-Flonk Center for Health Law Policy, Biotechnology, and Biophysics over at Harvard Law School. And it is my great pleasure to introduce Sigrid Sturks. Perfect. Thank you, got it. She is professor of ethics and political and social philosophy at Gantt University and also involved in the end-of-life care research group. She's going to be presenting for about 25 minutes on euthanasia in the Belgian system. And then after that, we'll hear a response from Laughlin Furrow, who is a general internist and director of ethics and palliative care programs at Beth Israel. He's also associate professor of medicine here at Harvard Medical School. And we'll hear from Dr. Furrow for about 10 minutes before opening things up to the audience for Q&A. Thank you so much, Dr. Fernandez. I'm really, really delighted to be here. So what I'll be doing is I'll, in case you don't know, some of the details of the Belgian euthanasia law and also since there is no English translation, there is an unofficial English translation. But the official ones are only in Dutch and French. So I will highlight a few of the most relevant provisions of the law. Then I will tell you a little bit about a very recent decision of our constitutional court about the extension of the euthanasia law to minors with the capacity of discernment. Then I would like to highlight some of the empirical data on the one hand from the federal commission, a commission that has been set up by the government to monitor euthanasia practice, but also some empirical data from our own research group, our end-of-life care research group. We have a group of about 40 researchers. Only two of us are philosophers. Most of them do the empirical groundwork. So I'm going to be highlighting some of their recent work. And then I would like to conclude with a really very strong controversy that's going on right now that's been going on for a while about the meaning of psychological suffering in the law, since it is possible in Belgium to get euthanasia if the suffering is only psychological. And I don't say that to pretend that psychological suffering can't be serious. But you can get euthanasia in Belgium in the absence of physical suffering. OK, so I would like to start with two preliminary remarks. I'm currently a visiting scholar at the Hastings Center. I've also given some lectures on euthanasia in Belgium at the Hastings Center. Got quite a lot of really useful feedback there. But it did strike me that quite a lot of people seem to think that euthanasia does not occur in countries where it is illegal. And I think it's very important to realize that that is not true, even if it is illegal in a country. It can be assumed that physician assistants in dying, including euthanasia, does occur, possibly even, to a significant extent. And you might be interested in looking at publications of the URELT consortium involving several people of our group where they monitored, for six countries in Europe, various end-of-life practices, showing that all kinds of things, for example, that you wouldn't immediately expect to be happening in Italy or happening in Italy, just as well as in other countries. So it's a myth to think that only what is legal is actually happening. And actually, to continue briefly on that, the element that played the most important role in the adoption of the euthanasia law in Belgium was actually an in-depth empirical study of our group. At that stage, I was not yet a member of the group because it's quite some time ago. But they had looked at all end-of-life practices in Flanders in 1998. And so this is before euthanasia law because that law is from 2002. And so they found that intentional life-ending at the request of the patient accounted for about 1.3% of all deaths, even though it's completely illegal. And intentional life-ending my physicians without patient requests, which obviously also was and still is illegal, accounted for three times as many deaths. And this really played such a huge role in parliament because the medical profession was completely against the euthanasia law. They didn't want it. Not because they were necessarily against euthanasia. A lot of them are not against it at all, but they just didn't want the legislature to interfere. They just said, let us continue doing what we are doing. The colloquial sangulier between the patient and the physician, let us do what we feel we need to do. Our conscience will be our guide. Please, legislators, stay out of this. And a lot of MPs said, look, this is really, we cannot turn a blind eye to this. If this is what's happening, then we need to do something. We need to have a law to set a certain criteria and monitoring. And at that stage, apart from this study, the only other two countries for which there were data were the Netherlands, Australia. And there was one study from the US, Diane Meyer and Timothy Quill among others were involved in that, but they didn't calculate it in percentages. So basically that's where things did. Second preliminary remark, very important at the same time that the euthanasia law was introduced, a law on palliative care was also introduced. And this law, and the same happened in Luxembourg, by the way, not in the Netherlands, but in Luxembourg, they also, at the same time, enacted a law on palliative care, declaring that every patient has a right to palliative care. And this also means, of course, that it's reimbursed by the social security system. And I think that is very important for the debate. You know, the acceptability or not of physician assistants in dying also depends not only on the quality, but also the accessibility of palliative care. And what we see in Belgium is that the rate of development of palliative care, unlike what a lot of people would expect, it has not been slowed down by the deep penalization of euthanasia. There was a very interesting study a couple of months ago. It was published in the JME by Kenneth and Jan, two colleagues from our group really documenting this in detail. And Belgium is now number three in Europe, sorry, number four in Europe when it comes to the development of palliative care. Higher, we have a higher level of palliative care development than the UK, which is the cradle of palliative care, as you know. And government funding of palliative care more than doubled in the period since the enactment of euthanasia law, more than doubled annual increase of about 12%, whereas the total healthcare expenditure, the total increased by only about 2.34% each year. So this is a really remarkable development and especially in a context of home palliative care, the funding is really, really increasing very fast. So the law, just very briefly, some important provisions from the law. What is euthanasia? Because, oh, okay, so euthanasia law, but how do they define euthanasia? They say, well, that is the intentional termination of life by someone other than the person at the latter's request. So as you can see, physician-assisted suicide has not been depenalized by this law. Unlike in the Netherlands, physician-assisted suicide has not been depenalized, but a few months after the law, the medical council, the Belgian medical council sent around a letter circulated to all the members saying, oh, by the way, this is fine too. It also falls under the law. You can do that too as long as you stay in the room until the very end. This was their reinterpretation of the law. Who can qualify for receiving euthanasia? Well, it has to be performed by a physician. So it can't be someone who is not a physician, and we know from our own research that frequently nurses are put under pressure also to administer the lethal injection, and this is hugely problematic, but according to the law, it has to be a physician, and it's still murder, but it can be exempt from prosecution if a number of criteria are met. In 2002, they still said it has to be a major or an emancipated minor, and the person must be legally competent, capable in the French version of the law, and must be conscious at the moment of making the request. So this is the root of the direct request. In addition to the root of the direct request, there is the root of the advanced directive, but euthanasia on the basis of an advanced directive can only take place if the patient is in an irreversible coma, and if the advanced directive is less than five years old. So this only, very rarely, in less than 2% of cases of euthanasia is it on the basis of an advanced request. The request itself obviously has to be voluntary, well-considered, and repeated, should not be the result of any external pressure. And in my view, this is the most important provision in the law, because this is really about how have they delineated the group of people who might qualify for getting it. Patient must be in a situation without medical prospect of improvement. There must be a situation of continuous and unbearable physical or psychological suffering, as I said earlier, and it must be the case that the suffering cannot be alleviated, and the suffering must be the consequence of a serious and incurable condition caused by accident or disease. So there is a very long list of cumulative criteria in this provision of the law. Also, a physician can only be exempt from prosecution if they respect all the conditions and procedures in the law, including reporting the euthanasia. And we have a huge problem when it comes to the reporting of euthanasia, but I will mention that a bit later. Just for the sake of information, and what I just showed, this whole list of criteria, if you compare that with the Dutch law, they just say unbearable suffering without prospect of improvement, and they don't delineate it in any more detail. So euthanasia is not a patient right. It's a right to request it, but it's not a right to get it. The physician has the right to grant requests if all the legal criteria are met, but obviously physicians can never be forced to perform euthanasia. There is a conscientious objection clause, and not only physicians, also other people cannot be forced to collaborate, and this is particularly relevant for nurses. Interestingly, in the case of conscientious objection, our law does not include an obligation to refer, but currently there is a bill in parliament. Some people feel that there must be a legal obligation on conscientious objectors to refer to a colleague. As a philosopher, I find that really interesting. It raises all kinds of questions of moral complicity. But the current law merely says that the doctor should tell the patient or her representative that he or she has a conscientious objection. They must convey this information in time. They must explain why they refuse, write it in a medical file if it's based on a medical ground. And if the patient or the patient's representative asks, then they must communicate the medical file to another physician designated by the patient or the representative. But if such request is not made, then they don't have to do that. So this is very much dependent on the initiative of the patient. And it will be interesting to see whether there will be a legal obligation to refer in the future. Then the extension to minors. In 2014, euthanasia became possible for all minors. And basically all the other conditions are the same. I've just put in bold what has been added for minors. They have to possess capacity for discernment. And it's really interesting. For the adults, they use the term competent, bequam. Here it's ordeals bequam. They have to be capable of judgment, whereas the adults have to be capable of acting. Hunderlings bequam. So they're using these different terms here. And there's a lot of discussion about what these things actually mean. And also for the minors, they have limited the applicability of the law to physical suffering. So psychological suffering can never be a ground for minors. And they must be, well, not imminently dying, but they must be expected to die within a short period of time. Whereas for adults, there is absolutely no legal requirement that you must be terminally ill or anything like that. Article 31 does not specify that. So there is an additional requirement on the physician to consult a child psychiatrist or a psychologist. And that person must testify in writing that the minor actually has capacity of discernment. The physician must also tell the minor and the parents what the psychiatrist or psychologist has concluded. And the legal representatives of the minor, usually the parents, they must agree. The euthanasia cannot take place if they do not agree. Now, three organizations, Yuri Levin, Provita, and Yonge Ravort at Levin, they challenged this extension of the law. They appealed and they wanted to have this extension annulled. They made a lot of claims saying that this is really insufficient protection of vulnerable people. They said it's really not clear what the legislature means with this term capacity of discernment. Specifically, psychologists, they said, really don't have the necessary expertise to assess these things. There is not even a need for a second investigation. If the psychologists or psychiatrists find that the minor does not have capacity of discernment, then euthanasia can still go on. And a number of other claims they made. The respondent, the government, well, first of all, of course, they said that the appellants have no standing. They said, look, you guys are not minors and you're not doctors. So you're not covered by this law, so you have no standing in this case. The government also said, look the travaux, the preparatory documents of the law are really clear. Capacity of discernment is a medical concept. And just leave it to the doctors. It's not a legal concept, it's a medical concept. And it means being able to reasonably assess your interests, in this case, reasonably assessing the consequences of your euthanasia request. So the court decided very, very recently, two weeks ago, they rejected all the appeals. The reasoning they gave, in my view, is actually pretty meager. They said, look, the law does contain enough protection for vulnerable people. Why? Well, they said that this law, the 2014 law, involves a higher standard than the law for adults. And what is this higher standard? Well, that the child's psychiatrist or psychologist has to declare in writing that the minor has capacity of discernment and religion rapport concernant ses constatations. Whereas for the adults, it's just said, draft the report. And so basically what this means is not only that according to the court, since this is a higher standard, it's fine. There's no reason to annul the extension. But this also means that for the adults, the 2002 law, that the advice of the consultant physicians has no binding effect whatsoever. So a second physician always has to be consulted for adults, but basically whatever they say, the physician can still go ahead. And when the patient is not terminally ill, then a third physician has to be consulted and there's a compulsory waiting time of one month. But so also the advice of the third physician, the first physician can basically ignore all these advices. And the court says, well, in this case, a physician cannot ignore the findings of the child's psychiatrist or psychologist. Then the most recent empirical data or some of the most recent empirical data. So as I already said, we have a federal control and evaluation commission set up by the government. Interestingly, well, you might know this from the media, the president of this commission is an active doctor, oncologist, palliative care specialist who is himself very frequently involved in performing euthanasia. This has, of course, also given rise to lots of controversies, but the two chair, Dutch-speaking chair and French-speaking chair, they are elected by the members of the commission. So he hasn't been appointed by the government, he has been elected by the fellow members of the commission. And so this federal commission, they have to, by annually, they have to make a report available to parliament and of course also to everyone who wants to download it from the web, but it only exists in Dutch and French. So the most recent report covers the years 2012 and 2013. 1807 euthanasias have been reported for the year 2013. I'm only zooming in on 2013 here. Interestingly, 80% of the declarations of euthanasia are done by Dutch-speaking Flemish from Flanders, where I am from, from Flemish physicians. Only 20% are reported by French-speaking physicians. We have no reason whatsoever to think that they perform it less frequently. It's just that they're more reluctant to report. And as you will see later, the Flemish ones are also very reluctant to report, which is interesting because even if you meet all the legal criteria, not reporting the euthanasia makes the euthanasia illegal, but somehow for a lot of physicians, that doesn't seem to be a problem. Most frequent type of condition for which people get euthanasia unsurprisingly is cancer. Second most frequent diseases like MS, ALS Parkinson and the like, one in three reported cases concerns patients older than 79, and 13% of cases are non-terminally ill patients. Now, mind you, these are only the reported euthanasias and we know from our own research that the non-reported cases are of course much more likely not to meet the legal requirements. So we expect that there are a lot more non-terminal conditions in the non-reported ones. Interestingly, these non-terminal ones include very old patients, 80 plus, with so-called polypothologies. This is, I know it sounds a bit disrespectful, but this is the new fashionable term, polypothologies. I've had discussions with a number of medics about it and I say, oh yeah, what was the problem? Polypothologies. What this means basically, and I've just gave a quote here from the report of the Federal Commission, they admit that there are differences in view within the commission between, on the one hand, a majority who feels that it's okay to give euthanasia for this reason and a minority who feels that it's not okay. Why? Because this minority, including some physicians, they say, well actually, these polypothologies, it's just what every person of a certain age has. You don't have to be 80 plus. Basically, it's things like arthritis. It's that kind of thing that everyone at a certain age has. But this new term, the polypothologies, this kind of making headway, I also find that interesting because this really gives rise to the question, what are the boundaries of article three one? Okay, then our own group, every five years, we do massive frequency studies of all end of life practices, not just euthanasia. The two most recent ones were published literally two months ago in JAMA and New England Journal of Medicine. And we are currently analyzing a lot more of the data in detail, but those are not yet published, but we are analyzing in particular the neuropsychiatric conditions that give rise to euthanasia and the older age people because we really want to pay more attention to what's going on there. So yeah, sorry that this is all so small, but I just copy pasted some tables from the papers. What I just want to highlight is euthanasia in the last five years, it has more than doubled. So in 2007, it accounted for 1.9% of all deaths and the last measurement, 2013, 4.6. So these are anonymous surveys. These are death certificate studies. These are anonymous surveys involving officers of the court, et cetera, to guarantee total anonymity to the physicians who do our surveys. So what we get is a much, much, much more accurate picture of what euthanasia practice actually involves in Belgium. So 80 or 80 years or older, massive increase in the percentage of people who make requests, but also the requests that are actually granted in 2007, only less than 40% of euthanasia requests of this group were granted. Now it's already almost 76%. So a significant shift. Then also, educational level, patients with no or only a primary school leaving a certificate, massive increase less than 36% and only five years later, that has gone up to 70%. And also the causes of death, for example, diseases of the nervous system, now 100% of requests are granted and other disease, and this includes all kinds of things, non-terminal diseases of all kinds of natures, neuropsychiatric, et cetera, massive increase from 18% of requests granted by the physician to 71% of requests granted by the physician. So I think these are really remarkable shifts. And also nursing homes. There used to be a strong reluctance in nursing homes. People have their GP there, so it's usually their GP who does it. But now clearly there's a much, much higher prevalence of euthanasia being carried out in nursing homes. The characteristics of euthanasia, as I said, the advanced directives very, very rare. Well, it's gone up from 0.5 to 5.5 of people who get it after an advanced directive versus a direct request. And then consultation with other physician, which, mind you, is legally obligatory. That's gone up. It used to be about four in five. It's now gone up. It's still not 100%. So that means, in your case, there's no consultation with another physician. And interestingly, as I said, we are finding that a lot of the people who get euthanasia, we didn't ask this question in 2007, but now for the first time we put it in our survey to ask, to try to find out these people who have died after euthanasia, did they get palliative care? Were they in a palliative care trajectory before they got to euthanasia? And yes, most of them were in a palliative care trajectory before getting euthanasia. And this also has to do with the fact that the Flemish Federation of Palliative Care is the only palliative care federation in the entire world that has issued a statement, an official statement, saying that palliative care and euthanasia are not necessarily incompatible. They are coming under a lot of attack in European association of palliative care for having done that, but it is translating in a fact that some people actually get euthanasia in palliative care units, et cetera. So this is probably quite typical for Flanders. And then the final part of my talk on the meaning of psychological suffering. So I'm a member of the Belgian advisory committee on bioethics, a bit like your own national committee here and the Secretary of State for Health has asked us to look into the question, what does this term mean? More or less against my will, I've been made rapporteur of this commission, but well, I have to do it now and it's proving to be seriously giving rise to psychological suffering, I have to say. It's so difficult. I mean, I spent five years doing research on continuous sedation at the end of life. I thought I knew a little bit about end of life ethics and end of life decisions, but the more I look into this, the more it's like, my God, this is such a difficult question. What about psychiatric disorders and at psychological suffering, but also what about existential suffering, tiredness of life and all these things? And as far as, well, okay, just recapping, so you can get euthanasia in Belgium for merely psychological suffering. Again, not to suggest that it's not serious, but you don't need to have physical suffering to get it. So a lot of people in the literature and Kelly and McLaughlin are only one example. A lot of people in the literature say that for psychiatric disorders, look, you can never say that it's incurable. And that would mean that the Belgian law, the condition has to be incurable. So if a psychiatric condition can never be said to be incurable, it would mean that they're automatically ruled out from getting it. Now the Dutch Psychiatric Association actually disagrees with authors like it, the ones I just showed. They have issued a guideline for psychiatrists on what to do if one of your patients asks you to get assistance in dying. Unfortunately, this guideline only exists in Dutch, but I just translated two or three paragraphs from it because they really focus on the question, when can a psychiatrist conclude that a psychiatric condition is incurable? And their answer is very, very interesting. Also for the work that I have to do now in the task force, they say, look, you can only reach that conclusion if the following interventions have been tried. First of all, all indicated conventional biological treatments must have been tried. Secondly, all indicated psychotherapeutic treatments and social interventions that can make the suffering more bearable. And it isn't until this whole cascade has gone through that you can conclude that it's incurable. The treatment themselves, so this is still quoting from their guideline, the treatments themselves obviously have to be a state of the art. And then interestingly, they give, as an example, they focus on people with a depressive disorder. So to say, first of all, as far as the biological treatments are concerned, there are a number of things that you must have done as a psychiatrist, modern antidepressants, tricyclic, augmentation strategy, Mao inhibitor and electroconvulsive therapy. And moreover, you have to also be certain that conventional forms of psychotherapy or other forms of therapy have been applied by a qualified therapist. And all these things need to be done. So really the idea of a cascade. Obviously, there are cases where patients refuse treatment. And this problem of refusal of treatment is one that I'm also gonna have to address in my report on psychological suffering because I'm hearing more and more from geriatricians in their words that they have people who refuse treatment, people who want euthanasia, who don't meet the legal requirements because it's almost always tiredness of life. Obviously, they have polypathologies like everyone in their age group, but for geriatricians who don't automatically think that this is a reason for euthanasia, they say, well, they come to me and say, what do I have to do with this? These people refuse treatment. For example, they've had a total hip replacement. They refuse all treatment, including even physiotherapy, kinesiotherapy. And they are suffering. They say my suffering is unbearable. I meet the legal criteria. You have to give me euthanasia. This is an increasing problem for geriatricians and also for psychiatrists. So what if a patient refuses treatment? The Dutch guideline, first of all, says that certain treatments may never be refused by the patient. Well, they may be refused, but they don't become a ground for getting physician-assisted dying. And they list the whole thing here of things that cannot be refused and all the things that the psychiatrist has to do. And they give one example of where a refusal of treatment can be a legitimate reason to give assistance in suicide. And their example is quite far-reaching. I mean, it's very different from what's happening in Belgium. Seriously traumatized, quickly disintegrating patient who has been hospitalized many times, who has meanwhile become psychopharmacologically resistant, who has repeatedly received psychotherapeutic treatment and who now refuses a long-term clinical treatment in a foremost referral hospital. So if all those things that have already been done were administered in accordance with the state of the art, then the refusal of treatment need not preclude assistance in suicide. But that's a very narrow kind of cases. Whereas in Belgium, we have a psychiatrist who recently, in BMJ Open, described what she did with more than 100 Belgian patients suffering from psychiatric disorders and coming to her asking to get euthanasia. And it's really interesting. She refers to the guideline. She says she applies the Dutch guideline, but actually in reality, it's a very selective application. And I'm coming to the last slide here. Two weeks ago, for the first time in the 13-year history of our euthanasia law, a case has been referred to the public prosecutor. Two-thirds majority of the committee members is required, but there was unanimous decision. Eight of the 16 members are doctors. So you can only, it's sometimes really difficult to get a majority. In this case, there was a unanimity. And the case was a case of a woman who had lost her daughter, an 85-year-old perfectly healthy woman who had lost her daughter, who was saying that she was suffering unbearably as a result, who was clearly grieving. The doctor prescribed one antidepressant. And within less than three months after the woman lost her daughter, he gave her a lethal injection. He said, well, clearly my treatment is not working. He prescribed one antidepressant. This case, for once, they have referred something to the public prosecutor. The other ongoing controversy, and I'll end with that, is that there are an increasing number of euthanasia requests from criminals who have been declared legally insane, who are in institutions, where until recently, none of them was getting care. Now, some of them are getting a little bit of care. They're suffering unbearably, a lot of them. So the question then is, you know, can such a euthanasia request ever be accepted? Thank you very much for your attention. You want me to stand? Yeah, that'd be a good question. Thank you. So I just want to thank you. And again, as I was saying, what I'm gonna try to do in the next, I was initially told seven, now we're 10 minutes, is catalyze some discussion. There's so many different aspects of this that we could talk about. And I'm gonna speak primarily as a doctor in Massachusetts, where the question is a practical matter in Massachusetts, that as a policy issue right now is, should physician-assisted suicide be legalized? And I want to actually thank you for presenting this information, but I actually feel like I want to thank the country of the Netherlands, the country of Belgium, the state of Oregon and others, not only for being laboratories. I think you remember when there's a Supreme Court case, is there a constitutional right to this? The Supreme Court said there's no constitutional right to assisted suicide, but the states are laboratories. And so questions are, what can we in Massachusetts learn that might be applicable to ourselves, just as people in Belgium are trying to learn about what's applicable to themselves in the future? And a couple of my own thoughts about the topic are shaped by, I've been practicing palliative care for now 15 years, used to be a primary care doctor, and also called sometimes for cases in my role as Director of Ethics Programs at a big teaching hospital, Beth Israel Deaconess. And although the total number of cases I've been involved in when I was called and the patient was requesting assistance in suicide or euthanasia or something is less than 20, I think. So it's not a huge number. But I have not yet personally encountered a case where when time was spent by skilled people, not always me, understanding what the patient was worried about in terms of the future that led the patient to want their life to be over. Time spent really understanding that. Time spent identifying resources, some of which were physical symptom management, some of which were psychotherapy management, some of which were spiritual support. I think at least as often were family support that's available, family even then brought in with the patient permission. So far in 100% of the admittedly limited number of cases, to be very precise, the patient has stopped making that request. I don't believe it's because they thought they couldn't talk honestly to me, but you could raise that question. And chose a different path. About two years ago, I thought I had found had my first case. This was an older man with advanced cancer who, terminal cancer for which there were not effective treatments, totally able to understand and talk about his situation, make his own decisions. Very frustrated that he couldn't just move to Oregon where he clearly would have qualified under the law. I explained to him as I've explained to other people that if that day in Oregon, he went through the process, there's a waiting period, but it's a couple of weeks, that would mean at least a couple of weeks between today and his death. And actually in Massachusetts, it's legal as it is everywhere if someone takes in zero fluids to be certain that one is gonna die, virtually 100% certainty within two weeks. So in terms of the timing of the amount of time that he would live in Massachusetts, it would be the same as Oregon or maybe even shorter if he wanted to do that. He was very clear, good, that's good to know. And we talked about questions of thirst that the nurses who work in hospice say is an initial couple of days, but then people get used to it, their mouth can be moistened. And I was explaining to the nurse practitioner I work with, I think I've just found my first case where this person would have chosen this. And then it was actually the next day he was not drinking anything, figuring out how to get home. And then the next day, I went by and he's drinking a big thing of ice water. I said, what's happening here? And he said, Dr, I've been thinking about what you were talking about and what things I actually might wanna do in whatever time that I have left. And I've been thinking and actually, I'd like to see my grandchildren again. They're gonna come visit in a week or so. I wanna be in as good shape as I can for them, right? And so even he had chosen a different path, but be very careful, had chosen a different path for now up until the time of the grandchildren's visit and it might well have been that his first choice would have been to have the prescription and then end his life there. But I just wanna stress, in my clinical experience, the requests for assistance and suicide, same as euthanasia, 100% of the time I've seemed to me to be connected to a lack of adequate support for addressing the things the patient is worried about. If, and people have seen me write, some people have seen me write things, if we were to legalize physician assisted suicide or death with dignity, whatever one wants to call it, in Massachusetts, my consistent position has been the time to do that is after we know that all patients have access to not just the option of last resort, which even advocates call these, the options of last resort, but the other options first, right? One of the things that struck me, say good, when you were presenting the information from Belgium is that 70, almost 75% of patients now have palliative care involved. I would wonder, is that just at the very end, were they involved early in a comprehensive way that we really call the gold standard of palliative care? But it also has me concerned still that 25% had no contact with palliative care, so I actually honestly don't know if those people understood and had access to the gold standard. A couple of other smaller points because we really wanna have time for discussion. The Belgium law we heard for euthanasia applies only if there is physical or other suffering that cannot be alleviated by other means. And I think that as a physician, that is never true because if I cannot alleviate the suffering in any other ways, then complete sedation of the patient and then if we're providing no nutrition or hydration, death is inevitable within a couple of weeks, complete sedation can alleviate all suffering. So I worry about that wording in terms of is that actually ever true? Another question, even the concept of incurable psychiatric diseases, my guess is this is actually a translation issue from the French or Flemish words into the English word, but almost every psychiatric condition, this is a severe condition, we don't think of as curable, we think of as treatable and manageable and so that the word treatable had come up. So I'm guessing that that may be a translation kind of issue but we can hear about that. A couple of other things is really striking to me that now between four and 5% of all deaths in Belgium are well-documented to be using this approach whereas in Oregon where assisted suicide has been legal now for about 15 years, it's still hovering at two or three per thousand of people exercise that option and actually of the people who get a prescription about a third, never take it. And that's a 10 to 20 fold difference in the frequency of cases reported in Oregon under the law and what you're finding in your population surveys in Belgium. I guess the last thing that I would say is we know that these practices occur, not just assisted suicide, but also physician administered euthanasia. We know they occur everywhere even though in the United States we don't know how frequently. We know they occur everywhere and honestly in Massachusetts, I haven't worried personally too much about assisted suicide depriving well-insured, affluent people with access to healthcare of this option because I know people do it, I don't know that it isn't as available as it would be if it was legalized. What I hope for in Massachusetts and the bottom line conclusion of the state expert panel that I chaired was that unlike seropalent death panel lies polarizing, scaring people, making this seem like a divisive issue, what our expert panel found was everyone in Massachusetts agrees on this topic and they agree on the following that every person should be taking care of the way he or she would want up through the end of life from the full range of medically and legally available options and our health system museum have been trying to do that. I think before we add this last resort option, we need to make sure that the other options are reliably available to everyone but I personally wouldn't have a problem with this option being available. If I knew that, anyone worried or thinking about this really had reliable access to skilled people about those other options. We currently have a bill in the legislature that is being discussed about assisted suicide. I think that is a far preferable process to a ballot initiative where the wording will be imperfect, it's yes or no and then we're stuck with that is and personally my hope is that what will emerge out of this process is a package deal in some form where a conditioned passage or legalization of physician assisted suicide which I believe is inevitable in Massachusetts and most states after Brittany Maynard. I mean we're pro-choice stating. Sooner or later I believe it's gonna happen that the package is that it happens either together with or after the Commonwealth has ensured that everyone has access to these other choices including skilled help from people when they make a request to see whether as has been true in 100% of the cases I've met. Understanding, identifying and addressing the things they're afraid about leads them to actually prefer the standard goals, standard choices. Let's talk. So for purposes of the video why don't we have you both sit at the head of the table? Can you see if they sit down? Yeah. So Sebe, do you wanna take just a couple of minutes to respond to- Yes, I wrote down a few things. First of all, the very high frequency of euthanasia in Belgium and the steep increase. I think that is indeed an absolutely accurate observation and as you will have seen when you compare the cases reported to the Federal Commission with the results from the anonymous surveys then it's clear that only one in three euthanasias is reported by the physicians. Five years ago it was still one in two. I was completely shocked that it was only one in two as a citizen. I really find it very important to monitor these things. I want to know these things also as a citizen. People say, oh no, no, 50%. It's just, it's gonna go up. It took some time in the Netherlands to go up as well. These things take time. Some people even compare it with a tax return. What are we seeing? It's going down. It's now one in three. I think this is usually worrisome and the frequency is indeed very high. Has this got something? Some people say it's got something to do with the culture or something. I don't know. We really need to look into that more. Why? Because for the first time now our last figures show a market that we are really drifting away from the Netherlands. The increase in the Netherlands is, it has been going up there too with our numbers are rising much faster than the numbers in the Netherlands. I really think we need to find out why. Did the 75% have access to palliative care early? The gold standard, of course, is not implemented everywhere and the earlier, the better. I think even in the UK the gold standard is not always reality. But I can honestly say also from personal experience that the quality of palliative care services and also home care really is high in Belgium. And the other 25% definitely will have been told everything about palliative care. It's also a legal requirement in the euthanasia law and I have no reason to think doctors don't do this. I think this is a legal requirement. They do tell people everything about the possibilities of palliative care. But some people do refuse palliative care and of course people do have the right to refuse treatment. Then incurable versus intreatable. No, it's not a translation issue. Our law says, on genese luck it means incurable. That is the word they use and I think that is exactly why the discussion surrounding psychological suffering is so much more thorny than most of the cases of physical suffering. And then finally, you say the alleviation of suffering can always be achieved by total sedation. But as I said, for five years I've done research on continuous sedation at the end of life including very, very large scale interview study comparing sedation in Belgium, the Netherlands and the United Kingdom. We've done lots of interviews with doctors, nurses, but also with relatives of patients. And I think, I know from our research that there are also a lot of people who don't want sedation, for whom sedation is not an option. Consciousness at the end of life is valued by a lot of people, especially people with higher educational levels and so on. And I think just saying, like for example, as Sandra Day or Conner did in the ruling of VACO versus Quill, we don't need to ask the question of legalizing physician assisted suicide because everyone has access to sedation up to the point of unconsciousness. So let's not even ask the other questions because hey, sedation is available. I think that is, that is a view I wouldn't agree with because sedation is also a practice that involves an awful lot of ethical problems. I'm talking especially about the deep sedation with removal of food and fluids, which is how it frequently happens. You could say that if you look at the definition of euthanasia in our law, then what is the difference between that and euthanasia? I think there are a lot of similarities. So it's, I think not good enough to just say, just they have that, that's a legal option they have and until that has not been exhausted, we shouldn't consider anything else. Sedation is much more problematic, I think, than it is frequently portrayed to be. But thank you so much for those comments. Just on that last, thanks. I totally agree about palliative sedation. If the person is then going to die of dehydration, that's a week or two like that, that is not what most dying people want. And the data from Oregon, the reasons why people want assistance and suicide is 91% worried about losing autonomy, 88% less able to engage in activities and make life enjoyable, 79% loss of dignity. Inadequate pain control is just 24%. So I was just trying to stress that the law says that euthanasia is permitted if there is suffering that cannot be alleviated in any other way. Yeah, it must be a loss resolved, absolutely. Since palliative sedation can alleviate any suffering, it seemed to me that the words of the law, if you are allowed to do palliative sedation, you can alleviate any suffering and the law would never have a case that could be approved, is what the words of the law, not to support palliative sedation as providing an outcome that cares for people the way they would want. Great. So, Kristin, do you want to take the mic and give it to people for the Q and A? While we take some questions from the audience, I have a couple that I'm interested in hearing more about, sit on. Yeah? Okay, so the first has to do with this idea of psychological suffering and maybe you can just elucidate why we're talking about euthanasia in the context of psychological suffering as opposed to aid in dying, where presumably it's somebody who is physically able to take a pill him or herself and it may just be the vagaries of the law are specific to euthanasia and everything else underneath that is covered. And the other question has to do with whether any special provisions for pregnant women and whether they still have access to the same options under the laws that you've described. Thank you for that. We can ask easy questions on that. The one about pregnant women, I have to say, I've never received that question. It's certainly a very interesting one, to be honest. As far as I know, the law would apply to them in just the same way, but to be honest, I don't know and I've never, I mean, I've spoken with a lot of doctors who've performed euthanasia, but I've never heard about cases of pregnant women, so I will definitely have to find out more about that. Your other question couldn't be more pertinent. I mean, and also even in the case of physical suffering, if people are still capable of ingesting the lethal means themselves, then isn't that better? And interestingly, the Dutch Medical Association, shortly after the deep penalization of euthanasia and in their country, Physician Assisted Suicide, has also been explicitly deep penalized. The Dutch Medical Association issued a circular to all the members saying, by the way, if a patient is capable of ingesting the means themselves, then this is ethically preferable to euthanasia. Our Medical Association never did anything like that. They just reinterpreted the law, but I actually agree with the Royal Dutch Medical Association that it is ethically preferable. It's just that even in the Netherlands, it's very, very marginal. It's less than 1% is Physician Assisted, well, it's ingested by the patient herself. All the rest is lethal injection. And that too is something that I think we need to, yeah, we need to do more research and then try to find out why, because it can't be because of legal repercussions. There must be other reasons why they prefer to administer lethal product themselves rather than have the patient do it. Other questions? Maybe you can go ahead, Christine. So while people are thinking about other questions they wanna ask, I'll fill in. One of the things that really troubles me about this is how we find a way to allow for euthanasia for those cases where somehow, I'll say it vaguely, people really need it. While still cultivating a culture in which healthcare providers and families also feel obligated to try and mitigate against that feeling of what you've described tiredness of life. Because euthanasia is such an efficient answer to the problem of living that it makes it all too easy to be somewhat morally indifferent or at least not pick up a sense of obligation to try and help a person feel sufficiently cared for and prized and respected and valued that they don't want to end their lives. And I just don't see that happening. I think that is also, it's so relevant to what's happening in Belgium now because again, as I said at the beginning I think it's a very good thing that the Belgian legislator adopted this law. It is important to have monitoring. I mean, we knew it was happening after that study. No one could deny it anymore. I think it's important that it be monitored and that it's not just left to the medical profession with some logic of them being above the law or something. So I think the law is a good thing but it's so important to contain euthanasia practice to last resort cases. And that is I think the biggest challenge and also the monitoring, having this federal commission do its job properly, these are really big challenges because this tiredness of life, which yeah, you hear more and more about it. The geriatricians tell me they encountered more and more psychiatrists in all kinds of contexts and it's like, well, the suffering is unbearable. I have, I don't doubt for a second that that suffering is unbearable but the unbearableness of the suffering is only one criterion. I think tiredness of life is not, it's not a disease. So why bring in medics to solve a problem that is not a medical problem but a social problem? And when I say that in Belgium, people are like, oh, are you so conservative or you know, you seem to be against euthanasia because you raise these questions. And I think these questions need to be asked and a lot of people who are tired of life and who feel that their life has no value anymore, in some cases we know that is because they are isolated. Some people literally say it is because I'm lonely and is this the best answer we have? I mean, we had one of the physicians saying in the media, in the newspaper interview, well, as a physician, obviously I can't give them a family but I can give them a lethal injection. Then you think, no, I have to be dreaming. I have to be dreaming. This cannot be what a physician says, right? As a kind of, oh, well, otherwise they'll continue to suffer unbearably and otherwise we force them to commit horrendous suicides. So euthanasia as a kind of suicide prevention and this is a new strand of thought that is developing. I really have difficulty with this but at the same time I agree with you that in some cases I think it can be an ethically appropriate response to last resort cases but it's so important not to allow it to spill over. Well, I think it has already spilled over in Belgium. I think it's really important to try to do something about that. Robin? Thank you. My question has to do with the five year for the advanced directives that it's limited to being executed within five years only. And so my question pertains to the example of dementia or Alzheimer's disease where sometimes referred to as the long goodbye and to, is there any, so my question is, is there any flexibility with regard to that five year because in some ways it could actually result, it seems to me that it could result in premature euthanasia or if the person actually has a condition that is treatable or slows it down which is now the target, that it could actually make it un-executable when the person actually loses capacity before five years. So there is no flexibility at all with regard to the five years that is taken strictly and yeah, premature, we get more and more premature euthanasia is a strange concept but more and more people at an early stage of Alzheimer's are opting for euthanasia and say I wish I could wait longer but I cannot risk no longer being legally competent and then having euthanasia refused. So especially a lot of writers and intellectuals are opting for euthanasia at early stages but it's also spreading initially it was just writers and intellectuals and people from the cultural sector now it's spreading more widely and by a lot of people it's seen as well the only answer to dementia because you can't possibly have quality of life. It's all to do with these general perceptions that people have about dementia. My question had to do with the minor and I was wondering for the psychological evaluation are these psychologists getting any training? Are they, is there like an internal system where you kind of go down the list in the first one who takes the case, takes it or a patient getting the shoe who evaluates them or the doctors who are making these decisions? Well first of all I should say there hasn't been a single case yet since the law entered into force. The doctors who wanted it is because this 2014 law came about because doctors wanted it. Pediatricians wanted, not all pediatricians there were also 160 pediatricians writing letters to parliament saying don't go there but there was a strong and vocal group of pediatricians and emergency care people who wanted it. They did admit it would hardly ever be necessary and well there hasn't been a single case reported but the law has only been, yeah the law was only adopted a year and a half ago but there is no provision whatsoever and the constitutional court has also made that clear. None of these psychologists or psychiatrists who will be consulted will have to have undergone any additional training for this. So I'm thinking about this question from the perspective of a psychiatrist which I am and thinking about all the, maybe not wanting to think about the number of people that have involuntarily committed to hospitals over the years who have come in suicidal and or tried to end their own lives after suicide attempts and then thinking well how do we think about both sort of ethically and practically drawing the line between when one's not permitted to harm themselves but they are permitted to ask somebody else to do the very same thing for them and what that would do in terms of our view of mental illness and for the field of psychiatry. So in particular, late last week had a very heated conference call with the ethics committee of the American Psychiatric Association of which I'm a part with this idea that if American psychiatrists don't stand up against euthanasia for tiredness of life or for psychological suffering that our entire profession could be decimated because we as psychiatrists and the health professionals are responsible for being the ones who help patients or help those who are ill find a space to see the alternatives or to make life bearable or to at least sit with the patient and ally in their experience as it is even if it's nothing more than an existential togetherness. And so I wonder, so my specific questions with that background are number one, what are the civil commitment statutes if any in Belgium regarding when psychiatrists and other mental health professionals would have an obligation to prevent or to suicide for a patient and how might that dovetail or how might that be complicated by the availability of euthanasia? Because I could think of many patients who said like they've been to the emergency room I've seen them over the course of eight, 10 years, right? 100 times and they're really gonna do this again or you're really gonna send me to the hospital but what are you just gonna let me be and just let me die and not find me? Now, we can come up with, we can debate whether that person who has so much experience with self-injurious behavior is really suicidal or wants to be found, right? Because you'd think that after the, probably before the 99th time you might figure out how to be successful in your suicide attempt. But it seems to me that there's a tension here that's hard to resolve. I think there is a tension and of course prevention of suicide is very, very important in every country. And Belgium has a very high number of suicides. Psychiatrists but also other medical professions but especially psychiatrists of course have to play a very important role there. But I do think it's still important to maintain a number of distinctions. Like for me, the tiredness of life is something completely different or what some people call existential suffering is completely different and also is not covered by our law. That doesn't necessarily mean it's not happening but it shouldn't happen because I actually think the way the legislature has attempted to delineate the group of people who could qualify by saying there has to be a condition, has to be incurable, the suffering has to be unbearable. These cumulative conditions automatically would make it impossible for tiredness of life and existential suffering. For psychiatric conditions, they can fall under Article 3.1. And that's why I think that this guideline of the Dutch Psychiatric Association is so important. In Belgium there is nothing. A lot of psychiatrists talk to me and they say I get more and more euthanasia requests, I'm struggling, I'm having ethical dilemmas, and there is nothing. There is no, our psychiatric association has not issued any guidelines on it. A lot of it is like a taboo and pretending these things are not happening. I would agree with the Dutch Psychiatric Association that in very exceptional cases, and this guideline is a very long document, I only highlighted a few paragraphs, I think it's a very, very good document. First of all, it's not shuffling the problem under the carpet, it's not denying that it exists. But at the same time, they raise this problem what you say, loss of hope. How, if you say oh yes, and if none of this works, then there is still physician assisted suicide, to what extent are patients then still gonna fight and struggle, the problem of loss of hope. I think that that is an issue and we have some colleague of mine at Gantt University who is a psychotherapist, they have now set up a campaign to say well we are in principle against euthanasia for psychological suffering because we feel we cannot work with patients anymore under these conditions. I still have so much more reflection and analysis, this is only just beginning for me, I think I'm gonna need a long time to, and perhaps even then I will still not be able to grapple with these questions. All I can say is I'm happy I'm not a psychiatrist. I mean, this must be what you describe, already makes me think how, yeah, it must really be the most difficult and heartbreaking dilemmas that a medic could be facing. I'd like to actually come back, I mean, thanks for that. I'd like to come back to Christine's question and let's actually underpin some of these, whether the option of anyone's life, assisted suicide, euthanasia, whatever is in some cases so simple, so clean, whatever, that it's easy and then other paths or solutions that are harder can get lost. I mean, one of the most, I'd say, the vast majority of patients that I see who know that death is coming soon, what matters most to them is how their family does, right? Not everybody has family, not everybody cares about family program, but the majority, what's most important to them is how their family does. It is very common for their starting point to the point when I've seen them is they're really intensely worried about being a burden to their family. But spending time with the family members, the overwhelming majority don't see it that way at all. They see it as the exact opposite. Mom has her whole life sacrificed herself for us. Like, this is our chance to actually show her how much we love her, our gratitude. It takes some real work for mom who's always been on the giving end to be able to accept, appreciate, receive that love. Even when she's not able to do that fully, it's still incredibly pricelessly meaningful to the family to be able to show that love and carry on memories of her in that deepened kind of way. And the concern that patients have about not just themselves and their suffering, but being a burden or whatever when there's an easy answer that I think means some people are not gonna work through that. Maybe some parallels to encyclotry of there's an easy answer for the patient about if they can get you to approve assistance suicide euthanasia, then why would I even want to try to work on this hard, painful psychotherapy that the psychiatrist is suggesting? So I think there's a really complicated dynamic between the ease of the solution and the challenges of other things that if you can work through the pain and the challenges may even for the patient be much more deeply meaningful, but that's not guaranteed. I just think that's really, really complicated and hard. Well, first of all, I'd like to thank you for being here. I realize how wonderful it is to have an opportunity to hear about these experiments as Lachlan put it that are going on other parts of the world from people who actually have firsthand knowledge about that. So this has been really great. Thank you. The other thing I noticed from hearing Becca's comment is how much our views about these things are probably affected by the worlds in which we live. And so for me, I work in an intensive care unit. And I think that's really affected my views about this since in the modern intensive care unit, it's very hard to die if somebody's not going to let you die. And the deaths that I'm involved with and I work in a pediatric ICU, so they're particularly poignant often. I mean, they happen when we say it's time for you to die. People don't just get up and die in an intensive care unit. And so the idea that the medical profession and dying would be just intimately connected just seems very comfortable to me in a way. And I would just say that I want to bring up just two specific ways that I think practices in our own culture are not that much different from what is happening in Belgium and the Netherlands. The one that has already come up is the notion of terminal sedation and stopping tube feedings. I mean, to say that that's not euthanasia, I think it's just playing with words. When you put somebody to sleep and you stop feeding them, they're going to die. And all you're doing is you're doing it more slowly than it would otherwise happen. But I think it's just playing with words. I think we're already doing it in that context. And then the second context I'd bring up is around patients who are dependent on some form of life-sustaining therapy. So one of the most sacred principles we have in medical ethics and law in this country is the right of patients to refuse treatments that they don't want. And they can refuse those treatments for whatever reason they want. So this point has been made over and over again. But I think it's relevant that if you happen to be lucky enough is, of course, not the right word. But if you happen to be dependent on a life-sustaining treatment and you are tired of life, you have the full right to die when you want to die by having that life-sustaining treatment withdrawn. And for as much scrutiny as I think people are appropriately given cases of youth in Asia, I'm not sure we even apply that much scrutiny to people who say, I no longer want to be on my ventilator. I no longer want to get dialysis. Their reason could just simply be tiredness of life. And we say, well, that's your right, because this is such a deep principle in American culture that for whatever reason, you're allowed to do that. And so those kind of anomalies just make me think that there's not this bright difference between what's going on in these different cultures. It's more shades of gray. Yeah, and a lot more than 50, I think. Exactly, there are so many ethical issues, legal issues, that run across these different end-of-life practices. Certainly, sedation, but yes, also withholding and withdrawing treatments. I mean, in our surveys, we ask doctors about their intentions, et cetera, not only when they administer the lethal product. And it's so interesting what comes to the surface and how a life-shortening intention can be present on behalf of the medic in all kinds of contexts. So I fully agree with that. And we don't give that scrutiny, just like, yeah, patient has that right. So just going to be robots, and we're just going to reiterate what the law says or something. What you said about being a burden, that is something that as an ethicist also frequently worries me. It seems to be increasing in our societies. I don't know if it's the same here, that people seem to come to regard any kind of dependence on any kind of care and assistance as being a burden. I don't want to be dependent on anyone. Sorry, even if you just love someone, you're already dependent on them. What is happening in our culture, that this seems to be the absolute worst thing we could possibly want to be dependent on another human being. And this really, all these changes, I think, are having all kinds of implications in the context of end-of-life care, too. And yes, of course, people, and in favor of individual rights and all these things, but there are things happening and conversations that should be taking place and that are not taking place. Or if they are taking place, and in Belgium, it's very polarized, like, oh, if you raise those issues, are you an opponent of the law? It's as if you have to, only if you're an opponent of the law, can you raise those questions. And that is, I'm getting so fed up with this. And I'm also getting so fed up with the idea that only euthanasia and physicians assisted suicide raise ethical issues. All medical end-of-life practices do. We're going to give Dr. Blackwell the last question. As someone who is of the age of polypathology, I'd like, what is the difference between polypathology and tiredness of life? Well, I think I'm speculating here, because a lot of the we are still analyzing a lot of the data from our survey in more detail. But I think a lot of these polypathology euthanasias are actually, well, the reason why it's performed is tiredness of life. But the polypathologies are mentioned as the reason, because some medical ground has to be found. Oh, we found a symptom. It's like with sedation, you have to have a refractory symptom. In our interview, some medics said, I was so happy that that patient had a refractory itch, because then I could finally initiate the sedation. Because of some guidelines, they have to be that. And, OK, now we can take this box. And so they need to mention some medical ground. I think for most of these tiredness of life cases, euthanasias are not reported. But for the ones that are reported, some doctors do it in the open, and they declare all their euthanasias. The doctor who is prosecuted now, he said, oh, I'm confident that I'm going to be fine. I've done lots of euthanasias like this. This is not my first one. And he has conscientiously always reported them. So I think the tiredness of life is like, they didn't mention the presence of polypathology. Two or three symptoms is enough, I guess. And for the federal commission, this seems to be good enough to not refer to the prosecution. A medicalization of suicide. I'm beginning to get the impression. Medicalization of old age, really. Yeah. It's the socialization of suicide. And a medicalization of aging. Since when is aging a disease? There's some of that, but I just not to defend polypathologies. But the most common condition that Americans have that is causally connected to their death is not any disease or collection of disease. It's elder frailty. Frailty is now the word that people use, that is causally connected to a short life expectancy. And part of the problem, I think, is we have medicalized in the sense of medicalized means, there's an identified disease that fits in our diagnostic categories. And a whole lot of people who are clearly near the end of life, who don't have one of those, but who are frail so that whenever the pneumonia or the hip frat whatever happens, they're going to almost certainly die, get lost in this. So if polypathologies or something, we need some category for those people, not necessarily for euthanasia, but for all kinds of care giving reasons, because they are predictably in the last part of their life. And when we don't recognize that, when they develop a pneumonia, we rush them to the hospital and intubate them and all those things because they don't have a terminal illness, so we have to do this. But they actually do have a life expectancy that's as short as people with a terminal illness. So that's a conceptual challenge for medicine that I think has practical importance for maybe more Americans than even people with cancer. I'm getting the seminar ending signal. Thank you both. It was wonderful. Thank you. Thank you so much. Thank you all. Thank you so much. I've benefited so much from this. I really want to thank you. Thank you for suggesting that. This was an event that planned itself. Yeah. Really? Yeah. Really? Yeah.