By: Alon Coret, 2nd year medical student (University of Toronto)

Interview date: February 17, 2017

Biography: Dr. Arno Kumagai is a full professor at the University of Toronto and Vice-Chair, Education, in the Department of Medicine. He also holds the F.M. Hill Chair in Humanism Education from Women’s College Hospital and the University of Toronto. Dr. Kumagai received his BA in comparative literature from U.C. Berkeley and his MD from UCLA School of Medicine. He completed a residency in internal medicine and an endocrine fellowship and postdoc at UCLA. Dr. Kumagai came to the University of Toronto from the University of Michigan Medical School where he was on faculty since 1996. An endocrinologist with expertise in the intensive management of Type 1 Diabetes Mellitus, Dr. Kumagai is an internationally recognized educational scholar. After a career in bench research, Dr. Kumagai remarkably shifted his research interests from looking into the molecular mechanisms of diabetic complications to medical education.

Arno is married to another endocrinologist, Eleni Dimaraki, and they have a somewhat rambunctious son, Apollo.

Adapted from the University of Toronto Dept. of Medicine

AC: Can you tell our readers about how you got to where you are today?

AK: My route to where I am now has been very circuitous, and I actually started out in comparative literature at Berkeley. I then spent some time studying in France, bummed around a bit, worked in a bank, and did various things until I finally decided that I need to do something else. That’s when I decided to go to medical school. My original plan was to graduate from medical school and work in an underserved community, because the whole reason I went into medicine was that I wanted to work at the interface of where people’s lives really turned: where they went from being really healthy to being sick; from living to dying; where they experienced loss and pain. And that was something that really interested me, even as an undergraduate in literature; I was fascinated by this idea of how the self is constructed, how we learn who we are. And how there can be events in one’s life that can really disrupt that formation in many ways, and form something new.

So that was something that really interested me – this idea of turning points – and I realized as I went on that I needed to find an area where I could engage that interest. I chose medicine precisely because it was very personal, very intimate; you work with another individual, and it really meant you were working with people in their humanity. In some ways, when someone gets really deathly ill, the things that they hold onto to identify themselves fall away – their jobs, their identity as somebody who is, say, well educated; or a father, mother, spouse, partner; all of these things in some ways end up getting stripped away to the point where it is just a human being and their needs. And for me, at that point, I was very interested in knowing how to bear witness to that, and to work to help figure out what that new path was. So I went into medical school, and frankly, I hated it. The first two years were really tough, and I think the thing that saved me was the summer after first year, when I ended up working in a lab. By the end of the summer, my career kind of took a really sharp turn, and I decided that what I really wanted to do was become a basic scientist – or physician scientist – but also to run a basic science lab, and go into an academic career.

So I did that, and it was almost a single-minded determination, and I went through the rest of medical school planning that course. So I published some papers, kept doing research, and when it came down to residency, I decided instead of staying at UCLA, I decided to go down to Harbor-UCLA which was this big inner city hospital that served the poor. I really wanted to go there because in some ways I felt like it was the front lines. I could learn to become a good doctor anywhere, you know, but this is where it would actually make a huge difference. So I ended up going down there, and I did my residency in internal medicine down there. After that, I took a year off and went to Japan to do a research fellowship. And then I went back to the main campus in UCLA, back to my lab, and did a fellowship and a post-doc. I was still very much on a physician-scientist track, got recruited at Michigan as a physician-scientist, and opened up my own lab and had a research program. And I was pretty successful. But the longer I did it, the less happy I was; I was getting grants, I was getting published, but it didn’t really fit with what I think my core values were.

After several years, I ended up shutting down my lab, and shifted my emphasis over to education. It was a pretty radical departure. And I think, again, one of the reasons why is that I asked myself, ‘What is it that I would think about when I was driving home, or walking my dog, or doing the dishes?’ And I realized I was never thinking about my research. I liked my research, but I never thought of it. I would always think, what would it mean to have a chronic illness like diabetes, and what did it mean to work with people who had chronic illnesses, and how could I actually teach how to do that better? And what do inequities in medicine mean? What does it mean to not have access and to have to struggle with issues of racism and sexism and homophobia and prejudice against people who are poor? What did that mean, and how could we do that better? How could we teach for justice? Those were the things that I really thought about, and I was always thinking about them. So I decided to change course, closed my lab – which was unheard of in Michigan – and decided to concentrate on education. I let people know about this, and it was one of these things where you have to be in the right place at the right time, because two weeks after I decided to make this huge move, the head of education at Michigan called me in his office and told me they are developing this program on having people with chronic illness teach medical students how to look at these conditions. And he was wondering whether I was interested in directing the course, and was willing to give me carte blanche to do whatever I wanted.

So I was faced with the challenge of developing a course that would help students explore stories of illness, and how we could really engage people with chronic illness and their stories to teach medical students how to deliver for patient- and person-centred care. And then the second objective I had was, ‘How do you engage these stories and how do you develop learning activities that would get students – and faculty – to critically think about these issues of access, equity, diversity, and justice in medicine?’ I spent the last thirteen years developing these courses, and in the process, published a lot on them. So I started out in humanities – with a background in literature, philosophy, and history – then completely shifted gears and went into basic science, and then years later came back, informed by what I had learned from my patients. And in terms of the learning materials, most of what I used and incorporated into these courses comes directly from my patients. That’s kind of how it all began.

AC: Going back to that shift you had in your thinking, can you pinpoint a specific moment in time when you made that cut?

AK: Yes, actually. I remember it was fairly late in the evening, and I had been working on a grant in my office. I liked working on grants, because they helped me focus my ideas and reinforce my reading in the area. As I was writing this grant, I thought the chances of getting this grant were actually pretty good, and then suddenly it hit me that I could spend the rest of my time doing this and being pretty successful, and getting published, and getting promoted, but my work would probably make very, very little difference to anybody with diabetes. And that, for me, was very sobering. So one can argue that there is basic science and ultimately there is translation and then clinical applicability; I guess my concern was that it was so far from any clinical application that I could see. I couldn’t see the end. That’s when I said, you know, life is short, I only have a limited number of opportunities, and I need to do something that’s actually going to really make an impact. And I realized I couldn’t do that with cell cultures and blots.

AC: You mention the patient narrative-focused course that you developed in Michigan. Is that something you’re hoping to translate to the Toronto context?

AK: Back in Michigan, I used to teach a lot of undergraduate medical students, but here, my appointment is in post-grad. So now I have to translate a lot of my work from the undergraduate context to the post-graduate context. What we are particularly interested in doing at the Department of Medicine is figure out how to really enhance the patient’s voice in our work. And if you look at the list of strategic priorities for the next five years – and this is for everybody at the Department of Medicine – the top one is enhancing the patient’s voice in all of our work. And the second one is diversity and equity. These are two of my major interests, so really what we’re interested in doing is taking these principles and applying them in residency programs, in addition to influencing the undergraduate field. The idea of just taking an existing program and dropping it here doesn’t really fit, so I asked myself, what principles do we want to take from the things that I’ve learned that would actually make sense? So that’s our biggest challenge at this moment, and this is what’s so exciting.

AC: As someone with an interest in medical humanities and the arts, I am sold. But how do you engage people who don’t come into medical school with these interests?

AK: Let’s start with the ‘substrate.’ Who are the people who are coming into medical school? Who are we recruiting? I think part of this needs to be a shift in focus to people who have sensitivities toward areas that are outside the sciences. And don’t get me wrong: science is an essential component of medicine, but we are not scientists; we are science-using individuals. We use scientific principles in our work, but that’s not all we do; medicine is a human, ethical activity. So we need to bring in more people who have exposure to different fields – the social sciences, the humanities – who have done other things with their lives than to study. And for me, it’s really important that we have a diverse class – not just in terms of race, ethnicity, gender, sexual orientation, or socioeconomic status – but also a diversity in terms of lived experiences. The other thing is, the easiest way to shoot something down is to make a course about it. If we have a required medical humanities course, it’s like putting a bull’s eye on it. If you have aspects of different courses in which you think about these different issues, it becomes embedded, integrated within other course content. If it becomes integrated, then it no longer becomes a single target that people use, but rather a part of how we think about the practice of medicine.

AC: Could you elaborate on what that would look like?

AK: So let’s take communication as an example. I have a problem with teaching ‘communication skills,’ because communication between individuals is much more complex than a set of prescribed ways of talking to somebody. Instead of having this really rigid way of teaching communication skills, we should think about all the complexities that go into an interaction. And part of that means knowing who you are, and what assumptions you bring into this environment. So if I walk into a room, and if I have a new patient who is wearing a hijab, immediately because of who I am and the culture and society I grew up in, I start making assumptions about this patient that rob her of her uniqueness and individuality. It can be very detrimental to how I see that person, how I interact with that person. So I have been actively trying to move beyond these assumptions and instead think, ‘Who is this person?’ Yes, she wears a hijab, but who is she? She’s a mystery. And if she doesn’t have a hijab she’s still a mystery to me. So to think about who we are and how we interact with people is really about ways of bringing issues of privilege and power and justice into these conversations, into these essential aspects of teaching. Or in another area: I work as an endocrinologist and specialize in diabetes. And when we talk about patients’ medications, we talk about this issue of compliance, and being a compliant patient, a good patient. And often times we interject MORAL judgment into what should be clinical judgment. I introduce these points into the discussion because that’s part of diabetes, that’s what it means to work with people with diabetes. And it’s not like, OK, we are going to have a social justice moment here, but rather something more seamless.

The other thing has to do with the hierarchy of medical education. Traditionally, content is taught in a lecture format, where the lecturer gives students all this information, which they then memorize and regurgitate on an exam. Or when rounding on a ward, the attending physician has authority, and the students are meant to be there to absorb the information. And in these situations the hierarchy needs to change, because sometimes students come in very informed as a result of their lived experiences. If a team has to break the news to a patient about terminal cancer, the attending doctor can explain all the details on the pathophysiology of the disease, the treatment course, and the prognosis. But when it comes to knowing what it feels like to receive this diagnosis, perhaps a student is the best judge, because maybe this student’s mother just died because of metastatic breast cancer. Or maybe they have family who is BRCA1 and 2 positive, and they’ve had multiple deaths from breast and ovarian cancer. When this student speaks, he or she speaks with knowledge that nobody in the team has, so the power relationship – the authority – may shift. So this is what I am really interested in, because this is often the case with our patients. If we listen openly and respectfully to the stories people tell of their illness, in some ways that power dynamic shifts; they become the authority. And I try to think about this when I work with patients, because I know a lot about the treatment of diabetes but NOTHING about living with it.

AC: You mentioned this didactic model where you as a teacher incorporated social justice into your teaching. How do you do that in a curriculum (e.g. Foundations) where there is a shift to a student-led, problem-based, and case-based model of learning, where you don’t have that person to bring in that voice and that perspective? How do you go about teaching these things without making them very obvious and out there, and not making them a bull’s eye target?

AK: So even though the students lead the discussion in case- or problem-based learning, the faculty still play a role. And I think it’s up to the faculty and course directors to train the faculty to be very sensitive to upcoming moments where these things can be introduced in the discussion, and actually make a very intentional point of introducing them. So it’s not just on the student, and particularly not on the student from a marginalized community to do this, to say, ‘hold on a second, we need to talk about this.’ So you need those faculty champions to say: this is important. Because without being given the importance from above – and having these issues dismissed as “fluff” by the preceptors running the session – you’re doing more harm than good to these important conversations.

AC: With regards to the humanities in particular, what specific skills do you think students can gain from them in the context of medical education?

AK: Reflection, openness to other ideas, openness to uncertainty and ambiguity, and openness to feelings, fear, and emotions. The humanities can also help students understand their voices and develop their perspectives – and this is an essential part of democratic engagement.

AC: Looking back on your experiences, what would be your most important message to medical students today?

AK: By the time you get to medical school, you see that you and the people around you are very accomplished. Everybody is very smart, and everybody has done a lot of amazing things in their life. Medical school is tough, and medical training is tough, but the most difficult thing about it is to preserve one’s humanity. To still come out of it and still be a good human being, and be humble, and listen. So I think that’s probably one of the biggest messages I would send. That also means, even though you’re a medical student with tremendous privilege, always be aware that the privilege we have is at the cost of other people. We are who we are because people suffer and they need help; so in a sense we are here to serve. Our privilege derives from our ability to serve. I think that’s important. And then I think the other thing is that ultimately, medicine is a deeply ethical act. In medicine, we’re working with people, often times in their most vulnerable moments – of loss, of pain – and because of that, it involves an ethical responsibility that is paramount. Everything else is secondary to that. And I don’t just mean medical ethics in the traditional sense, but a responsibility to another human being; to humbly address his or her suffering. Once you understand that concept of ethical responsibility and putting the patient at the centre of your attention and power, everything else falls into place.

This is where humanities come into play. The humanities introduce a different vocabulary. We talk about suffering, we talk about pain, but we also talk about things like mystery: the mystery of this other person in front of us. Who is that person? What kind of social relationships do they have? How do they think about life? What do they want to do with their lives? And we think about this tremendous mystery about the nature of healing and the nature of care. The other term is ‘the sacred’ – a term we never use in medicine. People think it has a lot of religious overtones, but the way I look at it is, when I care for a person – that moment, that space – is sacred, because I am entering into a relationship with this person that they may never have with anyone else, including their spouse, their partner, their kids, their parents. They allow me access to them in ways that are really sacred, and I have to respect that.

AC: So then how do you bring that in when you’re tired, burned out, cynical, and overworked? How does that spark come back? How can you rekindle that?

AK: I think ultimately what needs to happen is we need to take a step back and have these moments to think about what we do, and moments where we really listen to patients and their stories. And I think if there’s anything that’s inspirational, it’s that. It’s the stories that we hear about people and how they live their lives. I work with people with Type 1 Diabetes, and this is one of the most demanding chronic illnesses one can imagine. It involves thinking about what you do every minute of every day of every week of every month of every year; it’s everything, it’s totally absorbing. And beyond this incredible demand, people with diabetes have to worry about long-term complications like blindness, kidney failure, amputation, and heart attacks, as well as the dangers of hypoglycemia. There is this tight rope that needs to be walked during every second of their lives. But on top of that, they have tremendous accomplishments and live incredible lives. I had people in my clinic who are competitive triathlon athletes; some guy was an ultra-marathoner who used to run 150 miles at a time. And they do these incredibly amazing things. So for me, when I feel really discouraged, I think about them, and I think, ‘Gee, how can they do this?’ And so my job is to say, ‘Dammit, I gotta make sure they CAN do this!’

Beyond my patients, I think about my students, who have this idealistic dream and want to realize it in medicine. Students who are willing to go through all this crap to do it, and deal with all these people who are very resistant, but yet they still do it. And wake up day after day, and do it. And I look at that when I feel overwhelmed, and say, ‘Damn, that’s why I do it too.’ So I think for me a lot of my inspiration comes from students, and above all, patients. These are the people that drive me forward.