 The distinguished honor these days of living in Canada. Amelie Dupont is a neonatologist and an executive member of Montreal University's Clinical Ethics Department. She has served as a member of the San Justine Hospital Clinical Ethics Unit at the University of Montreal, and she completed her MD as well as her pediatrics and neonatology training at the University of Montreal and is almost finished with her PhD in bioethics as well. So thanks and welcome to Amelie. Dr. Dupont. Thank you, Amelie. My offer for sponsorship still stands, and we'll have to today. Thank you very much for having me here today. It's always an honor and a pleasure to be back in Chicago. The fellowship here has changed me in ways I cannot even start addressing and opened up horizons I never thought possible, so I am forever grateful for the experience I shared here with Amelie and everybody else. So today I decided to talk to you about what we've been doing up north, as Amelie says, especially in Montreal regarding how we teach ethics, especially in the MD program and the initiatives that we put in place where we are now teaching ethics, but co-constructing this curriculum with patients, and I will dwell a little bit more into this. I have no financial disclosure. So all this started when a couple of years ago, one of the dean, the new dean and the faculty of medicine asked us to review how ethics were being taught in the medical school, who they were being taught by, and to whom and in what format. We quickly realized, I don't know if university here is like university there, but sometimes the right hand doesn't quite know what the left hand is doing, and so this was part of a concerted effort to document what was being taught to medical students in our faculty. We have about 300 students per year, and so this impacts quite a lot of people. The first thing we realized quickly was that ethics was present in lots of parts of the medical school, but was absent in really crucial parts of the training, and it was very hard to understand why it had not been put in these crucial parts of medical training. The second thing we realized was that the teachers that were actually teaching ethics were few and far in between. Most of them had no formal ethical teaching. They had no sense of community or support group to actually help each other out, and most of them felt quite isolated. So that was the second thing we thought we had to address. And finally, looking at that curriculum, we realized quickly there didn't seem to be any sort of structure or even continuity between what was being taught at different moments of the medical program, and that some of this stuff was actually quite outdated. And so based on this assessment, we were tasked by the dean and by the faculty to create a new curriculum that was gonna be innovative, relevant to clinical practice, and relevant to the students we were actually teaching for, and coherent. And the big question after that became, well, how do we actually do this in practice? And so thank you for the fellowship, it actually helped me quite a lot. So in order to really have a successful reform of our curriculum, we figured out pretty quickly we couldn't just look at specific parts and try to work on those parts. If we wanted something that made any sense, we had to look at the broad spectrum of everything that was being taught in order to develop a program that would actually stand and that would make sense. And so we reviewed every single initiative and we've worked on these initiatives for preclinical years, clerkship, residency, as well as the continuous medical education part because we quickly realized that even if we create a great ethical program, if with the hidden curriculum people are confronted to physicians who don't necessarily do ethical things, well then everything we've taught, we weren't too sure if that was gonna last. And so we're really addressing the whole of the spectrum and hoping that with some coherent vision, things will get better, even will last once the students are in practice. The other thing we tried to include was really more of a spiral approach with an increasing level of difficulty, meaning some notions of the ethics curriculum are quite fundamental. For example, moral pluralism is something that a lot of us struggle with and so we really try to put a lot of thought into how to teach about moral pluralism and so we'll address it at different times in the curriculum but always in a different format with also different goals that will respect where the student is because clearly a senior resident does not have the experience or the maturity level that a first year medical student has and I think it's important to respect that rhythm if we really wanna try to talk in terms that are gonna be understood and used well by the students we are teaching for. So one of the innovative ways we found and one of the very efficient ways we found of actually teaching ethics with this new vision was to partner up with the patient partnership direction in our university. That's a department that was started by someone called Vincent Dumais who was diagnosed with hemophilia, acquired HIV when he was 15 through transfusions as well as hepatitis C and quickly realized that these chronic diseases will except for the hepatitis C which is now gone were not ever gonna be cured. The real goal of relationship with his physicians were to figure out and make decisions that would better his life based on his objectives and looking at non-observance rates and how frequent chronic diseases in society, he figured one of the reasons probably we have such low compliance rate for example is maybe because patients are not really part of the team that makes decisions. And so instead of going from a paternalistic model where we inform patients of what the right decision might be for them, we went to the patient centered care which is still probably the main model even after all our efforts in our environment where we consult patients, we involve them but still the decision is usually made by the medical team to really a partnership of care model which is really what we're trying to implement in which patients are co-leaders and co-builders of either clinical or even teaching and research projects. So in our model we see health professionals as being the true disease experts but we table on patients experiential knowledge and make them living with an illness experts and really we acknowledge the complementarity between both visions and that's how we've been co-constructing our ethical curriculum with that vision in mind. Another way to put it would be that a patient partner is a person who is gradually enabled to make free and enlightened healthcare choices. He is respected in all aspects of his being and he is a full member of the interprofessional team. His life project constitutes the guiding principle according to which clinical decisions are to be made. So that kind of sends up the vision from the patient partner perspective and we're really trying to combine it with our vision of clinical ethics which is that most people in professional teams do ethics on a daily basis and most are actually quite good at it but a lot of them don't realize it's ethics they're doing and we're really trying to give them the skills to identify these issues, give them tools to work through these issues and really make ethics part of daily practice and not just something outside of the clinical space. This is just an idea of how we categorize patient in the patient partnership program. So it is a real big program. We have hundreds of patients now which are registered and as you can see based on this graph we go from the mannequin or witness patient that will come and recount his experience to disease with disease to a mentor patient which is a patient that's lived with disease for a very long time that's been trained and that's have participated in a lot of the things we do and that can now really ensure this mentorship role for students and the one we use in some of our ethics classes or if not most is the teacher patient. So really patients that have as an educational objective to promote reflectivity amongst students and to evaluate in this case ethical issues. We found that some of the strengths of these patient teachers are really the fact that they can provide feedback and the ability to give feedback and they promote ownership of ethical issues in daily practice. So those are the ones we work with a lot. Just to give you an example of how this happens in real life, I can give you the example of these clerkship ethics workshops which we developed two years ago. So one of the inspirations for these workshops was actually the doctor-patient relationship class that I was able to witness here in Chicago. Especially what I realized was how the fact that a student or a resident that I was part of the leading group it gave us a lot of proximity to students and students seem to open up and react really well to having a peer teach and not just a clinician like the stuff we used to do back home. So that's why I have a little Cubs logo because a lot of the inspiration came from that class. So we have as I said about, so we have 300 clerks per year and so we do this one year at a time and the goal is really to help them identify ethical issues because a lot of them can't. Help them analyze these issues and why they've become issues or conflicts if any and give them some ideas on how to solve these problems. So the faculty was nice enough to give us two, three-hour blocks two months apart with somewhere in between and was able to fund us so we could make 30 groups out of these 300 students with each group being led by a clinician, a junior resident and a patient partner. So we've been really lucky to have good faculty buy-in and we have these clinical vignettes which we start from but quickly conversations evolve into problems that have been lived by clerks and surprisingly even though they're early in their training a lot of them have faced some really tough situations and we address them through discussion, through examples through little workshops and they've been quite appreciated. As far as the themes that are addressed in these workshops we had ideas of what we wanted to talk about but we figured if we really wanted to co-construct these workshops we had to ask students themselves and so before every year we send out a survey. It's a fairly quick one with survey monkey anyways and the students are asked what are things you've been confronted with in the last year or year and a half and we adjust and we base these workshops based on these answers and what students report back to us and so last year the themes that we retained were doing something we feel is wrong or against our personal ethics being left alone in a difficult situation and anything to do with complex or some people would say difficult doctor-patient relationships. Those were really the three main themes that emerged from that student consultation and all of the workshops were based on these. As far as the work in between the two workshops it really serves as the basis for the second workshop and this is just an example of something one of the students decided to write about. So the doc I work with has joined me behind the nursing station. She takes the baby in her arms. She tells me she doesn't want the baby to die alone. I offered to take the baby so she can keep working. While holding him I asked myself do the parents know their baby is alive and if so would they change their mind? Should we tell them? A thousand ideas cross my mind. I wonder if this baby can hear me if he is in pain, if he would be better in his mom's arms surrounded by her voice. But his mom is not my patient. I don't know her husband. I was not there when all of this was discussed. If it was my baby I would have liked to know I would have wanted to hold him. After 30 minutes in my arms he stops breathing and his little heart stops beating. His parents still in the little room at the end of the hallway. So this is just a given example of the type of things students write about and this is one of many examples and really these workshops provide a safe environment in which these things can be discussed, addressed and even normalized because a lot of the students were happy to have these workshops because they felt they were alone with these situations giving them pause and concern and even distress and now we're providing them in an environment in which they can actually discuss these things. And so this has been just one of these examples. So what have we observed after creating these workshops? Well first we realized surprisingly, because usually ethics, I don't know here it's different but back home ethics is not always a symbol of popularity amongst the students. But these have been actually extremely popular and extremely appreciated workshops. The input of the patient partner was surprisingly excessively well received. Students were happy to actually talk to patients outside of a clinical setting which they often don't have the chance to do. They were happy to be able to explore patient perspective which with the time constraints and the resource constraints they don't often have the time to do on wards and in clinic. They were also happy to see that patients could actually be part of the team and could participate in the creation of healthcare plans and these discussions and they also felt for ones that they didn't feel threatened at all by the patient that was there. Sometimes if patients put in question things students say or things students do it has in the past not necessarily been well perceived but this was really a secure non-threatening environment and the conversations were great. I think very much in part because of that non-threatening environment we created around them. As I said earlier, the resident participation was really a key to success because before even starting the resident, the patient and the staff talked about some ethical difficulties they've lived through and so quickly the students could identify especially with the resident and felt very at ease talking about these really uneasy situations. And one of the things we didn't realize was that even having the patient there was important because patients could share stories with clerks and reinforce the importance that a clerk can actually have on a doctor-patient relationship or on the care a patient receives. The other thing was I think one of the reasons they worked well was this is not the first initiative we have with patient partners. This is one amongst many. We're really trying to operate a paradigm change and I think if it had been just this one maybe it wouldn't have been so well received but I think the fact that we have many at the same time probably helped with acceptance of the project. We did face some obstacles and challenges. So the first one being safety of the environment. A lot of people who are involved in the patient partnership are quite vocal about the need to change the paradigm and this was really not the place to talk about activism for patient partnership. It was really to focus on the student and in the groups in which that was a certain those worked much better. We were faced with performance obstacles. I don't know about here but academia in Quebec is having difficult times especially related to austerity and money and budget measures and so getting funding and buying by the University was quite hard and once we got it it helped us a lot. We're also in competition with different people who want to push different agendas and the time is kind of limited so it was nice to have buying by our faculty to promote these workshops. Relevance has always come up because as you probably know medicine is a relatively tough crowd and having even clinicians accept this model of teaching was hard but eventually was perceived as being beneficial and quite positive and to go to that credibility, legitimacy and even the strong relationship between power and knowledge we had a little bit underestimated but once we addressed it things went much better. So in conclusion this is a work in progress but I do believe if we want to change the paradigm in clinical practice changing it in teaching and research is probably necessary. The participation of the patient partners has really changed our outlook on how we teach ethics and how students respond to being in an ethical type of discussion and we really want to keep that. The big question now is how efficient is this and is this gonna have a lasting effect and so we're currently working on some research projects to measure the effect, measure the impact justify at the same time the resources needed for such a program and make sure that these effects actually last over the long term and hopefully the outcome is as positive than as it is now. So thank you very much. That was great, I think we have a question and we have time, we're ahead actually. Yeah that was excellent, thanks so much for putting that talk together. My question is, well first of all I'm Lynn Janssen from OHSU, sorry. My question is how do you train the patient partners and what difficulties do you find in that training if you actually do engage in that? So they have a general training that was created by the direction of patient partners and then they have specific training based on the activity we require their participation or yeah participation in. For example, for the workshops as it's, we thought it was a little dangerous with the clerks because they were so young and very oftentimes perceived as sensitive and we wanted to make sure that the environment was positive for them and so the ones we recruited were the patients with the most experience so they had done multiple activities prior, we knew they were good communicators, good collaborators and we actually sat down and did the whole of the workshop with them and the clinicians as a team initially for the first time and through that we were able to work out the different issues, make sure everybody understood what the goal was and could see in real life how these actually manifested. So we have general training and specific training and then if patients are new, we start with certain things and then once they become a little more seasoned then we're able to include them in other types of activities. Very short, wonderful talk, thanks so much Emily. Have you written it up and how did you identify the patients who you then brought in for training? Were they known to you before? So the first ones were but this has been going on for a couple of years now so there are different initiatives in very different healthcare environments so we'll recruit in clinics, we'll recruit in hospitals and we do a lot of promotion even in just general media to actually get patients to come and get involved in the patient partnership program so we've been able to recruit them through all these ways. So can I ask a follow up on Dr. Siegler's question? Do you choose specifically patients that are related to the activities? For example, oftentimes the heart and vascular people at the University of Chicago have heart and vascular patients on their patient advisory board but I would wonder if you would maybe want people who didn't experience ethical issues or didn't have ethics problems but were just plain people that might wanna do this which would be better in your opinion. So it depends on the activity. We have activities where we have very specific patients that have lived through the disease for example or we have some PBLs during preclinical years that are about family members that provide care I don't know what the exact English word is for that and so for those specific ones we have patients who have actually been that and so they're able to corroborate personal experience. Other things for example, these workshops they're not specific to any particular disease. The criteria is to have lived with chronic disease or an acute disease and be part of the program. So based on the activity we choose patients differently. That's great, thank you Omelette. Thank you.