 He's an associate professor of bioethics and family physician at McGill University. His main area of interest is end of life care, particularly palliative care and euthanasia in Quebec's unique multicultural context. He's had a market influence on health policy and has been called to testify before Canadian Senate committees and the Canadian Supreme Court. Dr. Bereza is the former director of the MUHC Center for Applied Ethics and just this past May, he was awarded the Lifetime Achievement Award from the Canadian Bioethics Society. Congratulations. Today, he will speak on medical aid and dying in Canada. Why is the slope slippery? Please join me in welcoming Dr. Eugene Bereza. Good afternoon, everybody. Mark, so I realize this is the first talk I'm giving since I graduated as a fellow 29 years ago. Which is the reason it's the first time I have the opportunity to really publicly acknowledge just how incredibly and profoundly grateful I am for the opportunity you gave me. There is just no way I would have had the career I haven't had if it wasn't for the opportunity you gave me. And beyond that, Barbara and Malika and I, we know that our lives would not have been the same without the opportunities you gave me. And I'd also like to thank and acknowledge the McLean family. So even though I haven't had the benefit of meeting the current generation, so to speak, Barbara and I fondly recall those wonderful chats we'd have with Dorothy McLean in those early days. So thank you very much. So my talk today is on made in Canada. And why is the slope slippery? I always start with the conclusion. So if there is a slippery slope, and obviously that depends on your point of view on this controversial topic, maybe it's not why we think it is. And because I haven't really talked to you for 29 years, I'd ask your indulgence for another two minutes of kind of introduction to set the stage. So my career for three decades has been at McGill. And I'm not sure all of you would know, but McGill is the home of Sir Willie Moser. Willie Moser was a graduate of McGill, and he was an attending physician in medicine and a professor of medicine at McGill. And McGill Faculty of Medicine actually still has his library. And here you see his actual desk, and typically medical students in their first year are keen to work at it. And I've had the opportunity to actually sit there and study medicine at Sir William's desk. But it wasn't just Sir William that was famous at McGill. These are just a few of the hundreds of famous McGillians. Wilder Penfield, most people would be aware of at the Neuro, who taught me, not taught me, but said the same thing that Mark taught me 30 years ago. And that was, if you're not doing teaching and developing new ideas at the very same act, you're wasting your time. So that was a high bar to reach. Ron Malzac with this theory on pain, which revolutionized pain approach. Balfour Mount, who was the pioneer for palliative care in North America. Dr. Phil Gold, who was the co-discoverer of the CEA antigen. Charles Taylor, the preeminent philosopher. Dr. Milner, who at 101 still walks up Mount Royal every single day to do research and gets million dollar grants. She was recruited by Penfield and just doesn't stop. So these are truly inspiring people, which has made it wonderful to do ethics in all those places. Now I work primarily now at the McGill University Health Center, which is the flagship tertiary quaternary care hospital system associated with McGill. And you'll see here at the top, that's the new $1.2 billion new spanking facility we had. But it also includes the Montreal General and Montreal Neural and other facilities. And here's a challenge for ethics we had. It's quite a comprehensive institution with a budget of close to just under $1 billion, which by Canadian standards is pretty significant. It's actually almost equivalent to the entire budget of McGill University. And so what was interesting is about five years ago after we retired from being the director of the Faculty of Medicine Ethics, I was asked to set up a new center, the Center for Applied Ethics at the hospital. And we were given the mandate to do clinical ethics, research ethics, and organizational ethics. And I'm proud to say that in the five years we've been in existence, I'm pretty confident we've become the largest hospital-based applied ethics center in the country. With a staff of 15, and we did that at a time where we had draconian budget cuts of over $50 million a year. And this is all publicly funded, it's hard funded, this is not through grants. So we review over 800 clinical trials a year, over 100 clinical consults. I'm very proud of the fact that at the senior organizational level, that means the 15, 20 people who make decisions about this place, the director of ethics is at that table as one of those voting members. So I'm telling you all this because if it wasn't for Mark Siegler, honestly that wouldn't be there. So again, thank you very much, Mark, for setting that up for us. Mark's influence, as you know, goes well beyond the United States. Some quick claimers and qualifiers and disclaimers. This happens to me often when I give a talk like this. Just yesterday one of my close colleagues said, oh, so you're up here to talk to us about how you kill people in Canada. I'm sure it was said in jest. But just to set the record straight, I've never euthanized anybody, nor do I intend to. And I'm not actually here to debate the morality of pros and cons. That's been done plenty of times. I'm not here to advocate for a position. I just thought you might find it interesting to see the social evolution would happen so dramatically and so quickly just north of the border. And just look at the perspective of that. In particular, I want to bring it back to the end, ultimately of how it affects what I came to Chicago to learn about the doctor-patient relationship. That's what I want to look at. Quebec has always been kind of a unique social laboratory, so I'm not sure how much we can generalize for this. And we have many microcultures within this distinct society. The other thing I should say is that while I'm a commissioner on the Quebec End of Life Commission, I do not anyway stand here representing the commission. These are my own views. The mandate of the commission, and this is the only jurisdiction Canada has this authority, is to retroactively review every single case of medical aid in dying. And then, based on our experience reviewing literally thousands of cases over the years, make recommendations for legislative change. So that's quite a mandate. So here's the outline of my talk. I'll very quickly give you a brief historical evolution of the laws in Quebec and the rest of Canada. You'll see there are two very distinct legal approaches. Then I'll give you some interesting data. The one good thing about the commission, among others, is we have this rich source of data that can tell us quite a bit about what's happening and why. But ultimately, I want to look at the challenges and pitfalls and the effects on the relationship. So here's a brief historical timeline. When I was starting out as a medical student, even then the Law Reform Commission of Canada said let's never decriminalize or legalize physician assisted death. That was in 83 by 1991. It was only 1991 that we had the right to die society created in Victoria, BC. And many of you may have heard of the Suradriguez case, the woman with ALS who was challenging this, went all the way to the Supreme Court. She had her key proponent being a member of parliament and she lost at the Supreme Court of Canada in 1993 by a vote of five to four. Jump one decade later and suddenly boom, within four years we go from being in prison for 14 years to it's now legal if you're a physician. So in 2012, the BC British Columbia Supreme Court declares that the laws against assisted death are unconstitutional. I had the privilege of being an expert witness in that Supreme Court decision as an ethicist. In 2014, the Quebec National Assembly passes the bill. The vote is 94 to 22 saying yes, it's legal, we should do it. A year later, Supreme Court of Canada also strikes down the criminal code as being unconstitutional, nine to zero unanimous. And then in June 2016, the Supreme Court gave the parliament one year to actually come out with the laws to fix it. So parliament finally voted it in by a vote of 172 to 137 and Senate passed it later by a vote of 44 to 28. So very briefly the Quebec framework and here you have to understand this is gonna shock some of you. The Quebec laws are based on medical aid in dying and by the way, we don't use the word euthanasia as a health act. It's not about the criminal code. It's not about killing or suicide, it's a health act. So look at that, the definition is it means care and you can imagine right away the physicians, the pushback from physicians saying who is a Quebec legislator to determine what the scope of medical care is? Surely that's for the profession of medicine to dictate but no, this is the first time historically that it was the government that dictated what the scope of medical care is and they included medical aid in dying as a medical act and therefore immune from the criminal justice system. Interestingly, when that bill passed in the Quebec legislature, our premier was a neurosurgeon, our minister of health was a radiologist and a minister of education was a family physician. So three key portfolios in the government at the time of that past were physicians. Just a point of interest. Here are the eligibility criteria. You can see there's nothing particularly striking there. You have to be a card-carrying Quebecer. The only reason we put that in there is to minimize medical tourism. We certainly didn't want to have it reverse or everybody from Toronto would be going down the 401 to Montreal, it's usually the other way around. And so the rest are pretty standard but I'd draw your attention to the last criterion. To be eligible to patient must experience constant and unbearable keywords, constant and unbearable physical or psychological suffering which cannot be relieved. And then here's the kicker in a manner that patient deems intolerable. So let's go back to the doctor-patient relationship. Before administering it, the physician must confirm that those criteria are met. So if I'm the physician, the first physician, I must confirm that my patient is in constant unbearable suffering. And the second physician has to confirm that as well. The process, private room, you cannot delegate this act. The physician has to do it, has to be in a room for the duration and on the death certificate, you cannot put diet for medical aid and dying. It has to be the underlying cause of death. Then you have to fill out forms so because of us processing this properly. Now Quebec, we have a history and a tradition of bureaucracy. We love our bureaucracy. We believe we can fix the world through bureaucracy and so there are forms. So these are among several of the forms a physician has to fill out with the team to process this. And I'm not sure about the following statement, but I'm pretty sure that people ask, well, do you actually get paid because it's fee for service, right? Do you get paid for medical aid and dying with a patient? And I think the answer was no, that would be a bit crass. We'll pay you for filling out the forms, which probably takes more time. So now the federal framework is completely different. This comes under the Ministry of Justice. It's not a health issue. So the criminal code basically said that anybody who helps anybody commit suicide or cancels them is eligible for 14 years in jail. So again, Sue Rodriguez appealed this, lost five to four and then Kate Carter and Taylor, again two patients with neurodegenerative diseases appealed. This is the case I was involved with in all the way to the Supreme Court, nine to zero, struck down as unconstitutional based on the violation of Section 7 and 15 of our Charter of Rights and Freedoms. Now here is the basic distinctions between the federal and the provincial. The kicker here is a physician in Quebec. You have to stick to both because Quebec is still part of Canada. Now, sorry, there's one glaring error on this slide and that's that first line. It should be reversed. So in the federal system, it's just not criminal. So if you do it, you can't be prosecuted. Whereas in Quebec is what we call a positive legal right. If the patient asks for it and is eligible, we are obliged to provide it. You have to legally provide it. In the rest of Canada, both physicians and nurses can do it in Quebec only physicians. In the rest of Canada, you can also do assisted suicide in Quebec. We only believe in doing the direct act injecting. So now I'm going to very briefly go through some of the data we have through the commission. This was a report it was submitted covering the first approximately three years of the existence of the law. And again, most of this won't be really news to you, but interesting facts. So here you see the number of medical aid and dying cases over the last three years. And you can see the significant rise. This is per trimester per three months. This is a percentage of medical aid and dying deaths of all deaths. And you can see that's also significant rise. Here's the age distribution. So you can see basically from 60 to 80 is the peak of patients receiving it. Primarily almost 80% cancer than your degenerative diseases following way below that. And here's the prognosis data. Basically, the laws basically say it has to be within a year of death. How you measure that is of course tricky. But you can see most of them are within three to six months of dying. The suffering, and this is all part of the form data we have is that most of the suffering, 89% is considered both physical and psychological suffering. 70, plus the 67% happens in hospital settings, 20% at home. This one was the one that made me sit up and watch. Of the number or proportion of those that were not given medical aid and dying who asked for it, why were they not given? What criteria they did not meet? 20% of those who didn't get it didn't get it because they changed their mind at the last minute. Which sends shivers down our spines. Because we're pretty sure that once you want it and you've got two weeks to live, of course you're not gonna change your mind. 20% who didn't get it changed their minds and that's the way they didn't got it. Okay. This is the graph that shows you the significant geographical variations. And of course the theory here is is because of the microcultures. It's a very diverse community. We know that in Quebec City for example, sometimes they seem to be batting 100%. Everybody who asks for it meets the criteria and other places almost nobody meets the criteria. What does that reflect? Interesting questions. Here is the distribution of the physician, the growth in the number of physicians over the three years. And normally like about what? 90% of physicians do between one and five over three years. There's only one who does 26 or more. About 96% of all cases meet the legal requirements. Only 4% of those examined by the commission didn't meet the requirements. Now here's the slides I really wanna focus on. Since that time we've had a couple of course key cases. One was a gentleman who suffocated allegedly his wife with a pillow. She was end stage dementia. He loved her dearly. Felt he can watch her suffer. She wouldn't have wanted it. He was convicted, I believe it was a two year sentence which had a public outcry. And then most recently two patients in neurodegenerative disease are also challenging the current law saying we're not eligible because we're not immunally dying. And Judge Baudouin, this is a picture many years before what she looks like now. This is when she was a former graduate student of mine said no, I'm striking down the current laws as unconstitutional. So it's opening the debate to extend it even further. So is that where the slippery slope is? And where are the three categories of extending it to? I'm gonna get back to it in a second. The three categories we're worried about slippery slope are extending it to the incompetent adult. Those who have a primary psychiatric diagnosis and minors, 18 and under. And every say oh my God, oh my God, slippery slope. Is that the slippery slope? And I'm not sure that's where the slippery slope. And then I go back to what I learned from Mark and Steven in the good old days. And balancing these things when it comes to the individual patient in front of us. So here are my personal takes on the challenges we faced. And when I go to the commission to review cases, we review about 90 cases a day. It's an extraordinarily depressing day. Defining the end of life is tricky. So it's one thing when somebody is imminently dying in front of you in stage cancer. It's another thing if you have a 94 year old frail with multiple morbidies, COPD with cardiac insufficiency, he falls down and breaks her hip. We all know she's not gonna walk out of the hospital alive. Not in Montreal. But she's not eligible. Because she does not have a primary disease that's gonna kill her. Verifying intolerable suffering. Here's the one that's a real kicker for us. So you have to be in constant unbearable suffering and I as a physician have to verify that. And yet when I'm reading and reviewing the charts, how often do I see in the submissions, patient calm at peace with herself, ready to accept her prognosis, ready to do, this does not sound to me like somebody who's an extreme anguish. We see these people. You pop by in the evening, they're watching TV, they're watching Oprah, they're playing cards with their families. So how does that work? Well, the answer is it's intolerable by their standards of what intolerable means. And that's what I'm wondering, what about the doctor-patient relationship in bridging that? There are new death rituals. First time a colleague of mine did do this, he said, I showed up, my hand was shaking, it was the first time. And then I looked around and there were 14 people in the room because it became ritual. The whole family wanted to be there to witness the passing, which was appropriate, but he wasn't ready for that. And what does that mean? I'm gonna skip through these for the interests of time. Human resources, right? They're not exactly lining up around the block to do this. And my institution with what, 1,400 physicians, I think we have four, five, maybe? So interestingly, physicians have their right legally and ethically to conscientious objection, but institutions don't. So my institution has to find some, even if there aren't any around. Then the question becomes, can you cheat as a patient? What does that mean? You come, you ask for it, you don't quite need the requirements, so you go away. So that patient stops eating and drinking, which has happened. They deteriorate, they come back, now they're eligible. Is that cheating? You deny them. I'm gonna skip the next ones and go to the last few slides of individual cases. These are heartbreaking cases. One individual who lived in our long-term care facility on a ventilator actually asked for medical aid and dying and got it because he was so anxious about the lack of quality of care he was seeing in our hospital. Here's one that also wasn't fun. I have to read this one to you. The patient's family was consistently, this was in the report coming to the commission. The patient's family was consistent against the patient's wishes to get made based on their own personal religious beliefs. The relatives were healthcare professionals who sought a legal opinion to stop the patient getting this. They invoked their own local cleric to try to convince the patient not to do this. And in particular, the family felt that the quotes, the patient was not suffering enough to meet the criteria. And the last case I'll leave you with, and I'll translate this from the original French, this is the only bright note on the scene after Dave Ninie's cases. A patient who was asked by her seven-year-old daughter, and this is a patient who's about to receive medical aid and dying, the daughter asks, mom, when you die, can you please send me a message from the other side? Send me a unicorn and a rainbow. And the mom received medical aid and dying, and as the family left the institution, what was waiting for them right in front of the institution was a double rainbow. And so obviously that affected the child and everybody else. So on that note, I really appreciate the opportunity to come in to speak to you. And I can't thank you all enough, including Anna for being a support for us all these three decades. Thank you very much.