KERCasts

The role of citizen patients in making care fit

October 14, 2020 KER UNIT Season 1 Episode 2
KERCasts
The role of citizen patients in making care fit
Chapters
KERCasts
The role of citizen patients in making care fit
Oct 14, 2020 Season 1 Episode 2
KER UNIT
How can curiosity drive a purpose-filled life? What does it mean to find your voice? How can patients, families, and clinicians make space for kindness despite the cruelties of industrial health care? Dr. Montori and guest Carolyn Canfield tackle these and other big questions in this latest installment of our KER Casts series. Carolyn works globally as a citizen-patient to expand opportunities for patients, caregivers and communities to partner with healthcare professionals in research, teaching, improvement and governance.


Show Notes Transcript
How can curiosity drive a purpose-filled life? What does it mean to find your voice? How can patients, families, and clinicians make space for kindness despite the cruelties of industrial health care? Dr. Montori and guest Carolyn Canfield tackle these and other big questions in this latest installment of our KER Casts series. Carolyn works globally as a citizen-patient to expand opportunities for patients, caregivers and communities to partner with healthcare professionals in research, teaching, improvement and governance.


Victor Montori:

Good morning. It is 10am and it's time to start the KERCast. Produced by the Knowledge and Evaluation Research Unit at Mayo Clinic. These KERCasts are conversations with people who help care fit in the lives of patients. Today, we are extremely lucky. Today we have as our as our guest, Carolyn Canfield. Carolyn, is a scholar in the Innovation Support Unit and an adjunct professor at the Department of Family Medicine at the University of British Columbia, and when one starts an introduction in those terms, one would imagine that Carolyn is a traditional academic that has joined the ranks of academic health care to make, you know, to make a contribution. Carolyn is a citizen patient, is a community organizer, is an advocate for patient safety. And is a partner to healthcare organizations and academic institutions seeking to move forward in these areas. Carolyn and I met by all accounts by chance, and it's been a transformative encounter. Among the long curriculum of collaborations and contributions that Carolyn has, I am particularly most proud of counting Carolyn as one of the founding fellows of the Patient Revolution, an organisation for advocacy and action that's trying to turn away from industrial health care into careful and kind care for all. Carolyn, welcome to the KERCast.

Carolyn Canfield:

Thank you so much, Victor, it is such a pleasure to be here. It's a real privilege and a real honor. And I'm just delighted that we get a chance to talk for an hour how often does that happen?

Victor Montori:

Phenomenal. Carolyn, I like, you know, often these conversations start with, you know, you know, story of your life introduction. But I'm particularly interested as you know, in the way in which people become who they are. How did you become you?

Carolyn Canfield:

Well, you know, it's nature, nurture is usually the way you know, we frame this it, was it luck, or was it by design? Of course, it's it's, you know, you begin to see patterns only on retrospect, if I go back to the six year old me, you know, I don't think I would have seen a very bright light ahead. I mean, that. No, I, I had no idea. So how do I become who I am, I was one of four children. And I'm told that at a tender age, long before six, I had a very strong sense of justice, right and wrong. Now, I don't know how much that was competing with my peers. But it was really a broader sense of justice. It wasn't about getting my part. It was that things had to be fair. And as I tried to, you know, create a theme I'm now 70 years old, if I try to create a theme for what's been a motivating drive, it is something about social justice and fairness, it's, it's a kind of naive expectation. And when I don't see it, I am deeply offended. And I feel like I can't sit still without trying to do something about it. So you know, I think about all kinds of, of activities, and it was, you know, I guess early on to try to find my voice and I struggled, I was extremely shy person, couldn't stand up in front of a room of my peers and open my mouth. And, you know, that's hard for anybody to believe now. But yeah, I think finding my voice was the first thing finding that I mattered and then finding that my voice could make a difference in the world, in some...

Victor Montori:

of hold on. So So this idea of finding your voice finding that you matter, you know, I'm struck by the by the narrative that extraordinary people are the ones that matter, right that this once in a million years type of larger than life, folks that are the ones that can make a difference. How does one, How do you discover you're one of these extraordinary people?

Carolyn Canfield:

Well, first of all, I don't think of myself that way. I don't I don't think that's what leadership is about. I mean, my voice articulates what others believe and feel. And that's I mean, that's that's where importance is to, to establish the fact that we are all connected, that there is a common thread amongst us. And I think that's, that's the basis for a civil society. That's and then exploring through that kind of dialogue, what it is to be having something in common. And I think in terms of healthcare, the whole dichotomy between the patient view and the professional view just seems so arbitrary, the more I meet people who are health professionals, the more I meet a variety of patients and patient experiences, and explore attitudes in the public. You know, we are all in this together, and it took to where we, where we find conflict, or clashes or different philosophies. It really, to me, it's, it's a mistaken belief, we make assumptions about the other. And

Victor Montori:

so it but it's fascinating that you use that you say that the role of the leader is to articulate

Carolyn Canfield:

I think so,

Victor Montori:

articulate what others are feeling and experiencing, did I get that right?

Carolyn Canfield:

Well, I think that that's part of it. And, you know, it's very nice to have someone say something you're thinking. I mean, it's, there's an, excuse me, there's an attraction in that there's no doubt about it. But and we don't want to feel alone in the world, we want to feel as though we do have things in common with our, with our peers, or with others. And I think establishing that is really, I mean, that's the basis of all the concepts of equity and representation. And, and I mean, so humility, I mean, humility is the other part of it, I think, the only way you learn is by listening. And I think that one of the greatest practices that I have to work on that I do have to work on is listening carefully, really, really listening, hearing the ideas, the voices, that may be quite intimidated, that may be very much in the background that may be largely invisible, and having an appreciation of the huge diversity of experience. There's a lot of arrogance to go around the world. And I don't want to be a part of that, you know, this...

Victor Montori:

So, articulation with humility, articulation of the feelings and thoughts of others, with humility, and then having the, the wherewithal not only just to articulate but also to step up to the front of the line in representation of those voices.

Carolyn Canfield:

That's the, when I when I faced the challenge in my life's narrative of: Should I get involved in healthcare and try to make a difference? What I recognized in myself as a skill I could bring to the project was that I'm, I'm not afraid of pushing doors open, you know, I have found the confidence to ask to be led in the room and to be sometimes quite aggressive about you need a patient there, you know, you need that point of view in the room, and then being on very best behavior to ensure that I create a good experience for the others. And don't besmirtch the reputation of patients. But to then be in that alien environment, because for me, healthcare was a totally unknown world. And then be that sponge. Listen, listen, listen, and see if I could make sense see, if I could find a way of understanding this other culture, understanding this, this new atmosphere, this new way of behaving. So the confidence that I have for public speaking and all that sort of stuff, is is really an opportunity to, to go into a world that isn't my own. And to be able to speak for those who aren't with me in there, you know, to to be able to take the voices of others with me. And I don't, you know, as a patient advocate or citizen patient, I actually have precious few patient experiences. But what I advocate for is to getting more people in the room who have a wealth of experience, who have...

Victor Montori:

how do you, how, so you You didn't develop this in healthcare, you brought it into healthcare? How do you become an activist? Is that outside of healthcare? Oh, yes.

Carolyn Canfield:

Oh yes, I think I mean, it goes back to sort of becoming an adult and, and in university years, I think the discovery that, that people would listen to me if I, you know, if I had something to say, and that was a revelation, it wasn't until I was, you know, nearly an adult that I, did , find the confidence that sa ing what was on my mind, ith respect and getting over the shyness, the inability to to stand up to find that hat empowerment, you know, that oh, my God, you know, people, pe ple thought that what I said as, alright, so developing t en, rather rapidly a sense of,

Victor Montori:

What a fabulous duality, right, because on the not only inside, could I be, you know, could I have ideas th t I thought were, were worthy, but if I, if I spoke, I could s are those ideas, and people ere interested, they were intere ted in discussion. It wasn't, you know, Carolyn, you're right It was, Hey, what about this nd, you know, testing and, and developing a way of listenin , a way of incorporating a way o re- articulating idea and broadening my understan one hand, you are finding your voice and your ability to make a difference through it. On the other hand, discovering, perhaps at a later point, that that voice's job is to articulate the feelings of others with humility and bring them into rooms to which they have not had access yet. So it's an interesting duality of finding that your voice is to represent other voices.

Carolyn Canfield:

So I think you know that this concept of community, we're a virtual community or a physical community, a geographic community, was something that I guess I kind of tossed off for most of my life. Sure, I know what a community is, its that feeling of commonality where you belong? People like you people with common commonly situated interests, or values. I didn't have any idea until I moved to a small island community, a community of 750 people off the coast of British Columbia. And I was 38 years old, I was there with my sweetie, we had a fantastic possibility for self indulgent life. But there in that population was a issue of of public concern. It was a monumental battle between a community's self determination about land use, and Canada's largest owner of private property, a forest company who decided they wanted to become a real estate developer. Well, how could I not get involved? You know? And then I guess, you know, it was it was, I was curious about it was a whole area I knew nothing about and I guess that's thinking about lifelong, lifelong traits. Curiosity is certainly right up there at the top, curious, you know, who not only you know, who are these people I live around, but what is it that they're so agitated about? And what are the principles behind it? And the, I guess, the tipping point for me and understanding community was understanding when there is a crisis or a demand that everybody no matter what their political stripe or values, you put that aside, and you work for the common good. We had a forest fire on our island, a wildfire. And it was I was working as a volunteer fire dispatcher, it was extraordinary to see the people who came to the fire hall and said, You know, I've got a chainsaw, I've got a pickup truck, where can I go? Or I can make sandwiches, how do I do this? I can help drive the truck. No, you can't you aren't trained to, you know, come in here. Yes, there are things you can do. So and that's a dramatic example. But there are all kinds of examples where you realize that on this little island, the physical capacity, the amount of groundwater, that tree cover, the physical limits, natural resources are delimited by that high tide line. That's all you got. That's all there is, but also the social resources. The social resources are defined by the people within the community and you find ways of developing tolerance for each other, discovery from each other, sharing from each other to create better lives generally. And you see, it was a population where there were quite a lot of kids, young families and lots of retired people. So becoming acquainted with the life cycle, I was most moved. I think it was only maybe two months after we we arrived, there was a big birthday party on the island. And it was for a longtime resident who was turning 100. And I don't think that this had happened before. And it was an island party, it was in the largest room on the island, the school gymnasium, and it was all decorated, and Alice was in a party dress. And it was just amazing. And, of course, the variety of Islanders, the variety of human specimens that were in the room was extraordinary. And the most moving moment was Alice being presented with a US silver dollar that was minted in the year of her birth, as she held a newborn infant. And to see a century of life, in this person, and this this extraordinary baby, and she gave the silver dollar to the infant. I mean, that's what she wanted to do. It was part of a ritual, I was just I was so moved. So in living in this community, as it as it grew from 750, in 1987, to now around 1000, 1100, still very small place, with with some of the same stresses the same challenges. It taught me what community is, and people, I got involved in lots of Public Affairs, and people would say, Thank you, they would take me aside. And you know, when no one else was listening, and thanked me it was it's the most meaningful gratitude I've ever experienced. And I think it's because in a small community, these dynamics are boiled down to very visible elements, it's easy to see...

Victor Montori:

It's amazing how it turned out to be a training ground, to a great extent it sounds like to equip you to deal with a community that is not geographically bound, but is bound by experience, which is a community of patients. But before we go into that, you you propose at the beginning that it's you know, with nature, nurture, where there is chance or design, it sounds like to some extent, there, there's been a lot of there's been a certain commitment to a particular, you know, way of living that you've made that seems less less a chance thing and more about an exercise of your own agency, or do you still see a huge role for chance in how you ended up in the roles and in as a citizen patient now?

Carolyn Canfield:

Well, I guess in the way I've chosen to live, it's been very self determined, you know, I've seen the possibility of a door opening and said, Gee, that's, that's interesting. I wonder what it's like over there. And as, as a as a young person at 21, when I graduated from Little Grinnell College in the middle of Iowa, I had the bright idea, I was an American Studies major. And I was born in the US and raised in the US and went to school in Iowa. And as an American Studies major, I'd learned a lot about why the United States is the way it is through its history, political science, literature, sociology, so on. And I was really curious about why Canada and Australia weren't more similar. Because there were a lot of the same elements that were themes in that academic program. And I decided that I wanted to see why I wanted to on the ground encounter, Canadian culture and Australian culture with that direct encounter. So, I mean, imagine my parents thinking it was okay, for me as a 21 year old to set off on what would be 18 months and 40,000 mile trip, living in my car. You know, being totally alone in a country where I knew no one knew no one driving from Vancouver Island through Newfoundland, and you know, I fell in love with the smaller size of the country, the more humane environment even then, and and decided that this this was a place that fit me. So you know, I directed myself into the unknown with strong values and an open mind and enormous curiosity, met people encountered landscapes, learned about the literature, learned about the arts, learned about the political history, and the history of conflict and aggression and exploitation looks, you know, a very, very rich and rounded understanding and encountered racism encountered ugly sides of, of a society. And, and, and yet I thought this is this is a place, this is a place that I can can make my home. And so I, I did immigrate and as soon as I could I became a citizen so I could vote but you know, so you can say, well, there's, there's a lot of self will in that. But then, you know, you, I put myself and I can see analogies at every scale, you know, it's like fractals, it might be this afternoon, and it might be a lifetime of, of putting myself in the deep end, jump in the deep end, take the opportunity to go where you kind of don't know what you're doing in a new subject area, a new environment, a new social group. And, and that takes courage, you know, to jump into that unknown. But then listen, listen, listen, you know, look for patterns, look for ways of understanding, look for ways of connecting up ideas that can twist, preconceptions can change, and explore new areas. And, And to me, that's life. I mean, that's the excitement of being alive. doing that, and then sharing some of those ideas with people who know far more than you do. And testing them. Does that make any sense? Is this a new idea?

Victor Montori:

No, it's phenomenal. And folks who are in the live broadcast are expressing their their massive and not only endorsement of what you're saying, but admiration for it. I think it's very clear. If I'm, if I got this right, that, first of all, you you had the choice we all have, which is simply not get involved. But you do, you choose to get involved. Number two, you choose to get involved, animated by curiosity, you want to know what it's about. You know, there were a number of things that that seemed, in the conversation thus far been driving you curiosity, being one of them humility being another. But I was wondering if there was one thing that, that that that drives you today, if we were to choose one arbitrarily, as that is, what was the one thing that that drives Carolyn Canfield?

Carolyn Canfield:

Well, I guess making a difference and, and making a difference in the world, having some small influence in connecting connecting up people, enabling people to see common ground. And I think as we get older, there must be something organic about this, because I don't feel like I kind of consciously went through a process of saying, Oh, I want to make a difference in the world. That seems pretty arrogant. But when I found myself, suddenly a widow, and 58 years old, it was an opportunity. I know it sounds rather strange, but my my husband was, was my world was, you know, filled a big part of my life. And we had a remarkable relationship and deeply fulfilling to us both. And suddenly with his absence, there was a lot of room in my life, and I struggled with grieving. I think I still struggle with grieving. And I'd look to a lot of wiser people than me who had written about major trauma and major changes in life, and how one adapts and I suppose I had always known about it, but I'd never read Victor Frankel's Man's Search for Meaning. And with a title like that, you know, how can you not go there? And it's a small book, but it's full of insights that are adaptable, and, you know, he said, Don't Don't look for happiness. Instead, you will encounter it. If you either devote yourself to something outside of you, something greater than yourself. Or if you surrender yourself to another person, well, I've done that in the sense that I had an extraordinary partnership. That was that was about sharing and togetherness and delighting the other person, and and such joy. So I counted my lucky stars that I'd had that experience. And I thought, all right, so what about this idea of devoting myself to something else? And I had so many questions that had poor answers about the circumstances of my husband's death, and they weren't questions about medicine, as much as they were about the way people treated each other in medicine. You write about cruelty and cruelty towards patients. And what I saw was immense cruelty within health care. The care staff that had looked after Nick were devastated by his unexpected death. And that shocked me, I thought, well, if anybody copes with death, it's people who do this stuff for a living. And Nick and I were 20 years apart in age, and we talked about death for the 30 years, we were together 35 years. And, you know, we lived in this community where people are born and people die. How could it be in health care that there was that I arrived at the hospital with the sobbing nurses who were inconsolable. And then the thing that really, I mean, I had compassion for them. Of course, Nick was a charming man, he was gone. But he'd had a wonderful life. And I told them that. But what really frosted me was that there, they were abandoned. They were expected 15 minutes later to meet their next patient and to invest emotionally in that patient just as they had with my husband. And I went back in the hospital a couple of weeks later, I saw one of the nurses I knew, and she said, Oh, I'm so sorry, to hear about your husband. And I said, I said, How did you find out? Like, it was a little bit hard boiled, I guess. But so How'd you find out? And she said, Oh, I think it was in the nurses lounge. We were talking. And I thought, This is outrageous. How can you treat people like this, you ask them to, I mean, they have chosen a caring profession, a giving profession, to help people who are suffering, and they devote themselves with great knowledge and great skill, to enable people to recover or tolerate those, those symptoms that cause such suffering. And then when you've established that relationship of caring, and and the rewards of caring, you ignore that at the time of loss and crisis. So the emotional violence in in that really upset me and, and I just, it made no sense to me at all, everything I knew about medicine was about excellence. And in fact, the reaction the medical reaction to Nick's death was not to be curious. And I thought this is this doesn't fit my mental model. How have I gotten through half a century of life and I'm so wrong about medicine. And I come from you know, the 1950s of having deep respect for the doctor the hierarchical view, medicine is magic, here these antibiotics and these vaccines that cure childhood polio gone, you know, diptheria gone, that was in my childhood, those things happened. And I had such respect for the doctor, such respect for medical knowledge, and then I discover that behind that facade of authority and knowledge and deep commitment to to alleviating suffering, here is this engine that is creating burnout, you could not create a better mechanism for burning out people who have chosen this extraordinary way to to have a role in society. So it took me about 18 months and chewing over Victor Frankel's idea to look in the mirror and say, get the rabbi Hillel. Saying that we use we, I guess hack, hack up a bit. If not, now, then when, if not me, then then who, you know. So here I have this, this comfort, with facing power, this curiosity, this self confidence to get in the room, that humility that I know I don't know anything. I know nothing about medicine. I've observed things that are odd, but I know nothing about health care. So knowing that all through my life jumping in the deep end, someone throws me a life ring. That's great if not all dog paddle around. I make my way over to the side of the pool and then get back in the in the deep water again. So I thought you know it, I don't have responsibility for others. My husband and I didn't have children. And I didn't. I didn't have anything that would prevent me from devoting myself in the very intense way that I can.

Victor Montori:

Well, it seems, Carolyn that you've you figured out the way to answer Martin Luther King's, this idea of life's most persistent and urgent question, isn't it? Because, you know, that question was, what are you doing for others? Well, it seems like you found you found a way to answer that, as a matter of your life course.

Carolyn Canfield:

I think the reward of doing things for others speaks to one I don't think you can choose that. I don't think you can say okay, from From now on, I'm going to do things for others. I think it's you develop that. Maybe it's intrinsic, I don't know. But but having a sense of justice, again, you know, other people are not as fortunate as you or you see wrong that you want to right, or at least have some influence in. But I did. You mentioned Martin Luther King Jr. and I had a chance to meet him. I was 17 years old. I was not eight weeks into my college experience at Grinnell. And there was a great celebration of the founding of the college that brought people in from all over and the crowning glory was inviting Dr. King to give a sermon on the final Sunday of a week of extraordinary cultural and, and intellectual discussion. With with stars from all over. And I went early to the auditorium, I was there before anyone else, to the gymnasium, and waited, waited, waited, waited, the crowd filled, waited, waited. Dr. King was late, his flight was late to Marshalltown, not too far away. And then the entourage arrived. And I wasn't brought up in a church. And this was a sermon. And the title of the sermon was something about sleeping through a revolution. And there are various forms that you can find now of of this sermon, because he adopted it and adapted this theme. And I was spellbound. I was I was I was in while I was in his spell, I was captivated by his ideas and what he challenged his audience, full of young people, and lots of older people, and some of these celebrities from earlier in the week, great writers or great artists were also in the audience. And he said, you know, that, Be alert, see what's going on. Don't be sleeping through a revolution. And this idea of again, curiosity and agency. It was a call to action that was very powerful. This was 1967. Six months later, he was assassinated, he was gone. And 1968 was a year that we're all recalling this year in 2020, as a time of great upheaval. And it was in that cauldron of civil rights, of international adventure in Vietnam, of the voice and rights of the individual, and accountability. For those in authority. This was an extraordinary time to be 17, 18, 19, 20 years old. And I think this this idea of, of responding to a call to action. With with, again, the humility with deep understanding about our limitations, and not being fearful of how you may be shaped in the course of that. That adventure and not losing sight of why you're there. I mean, there's a there's something I've observed and I'm sure you have to Victor of founder's syndrome. You know, you find somebody who's, you encounter someone in life who is really great leader and a great innovator. A person that others want to be close to, a person with charisma and they create new things, new structures, new organizations, political movements, whatever and and they're very popular. And they have a momentum and they grow and they mature. And then what very often happens, in fact, maybe it's a rule. I haven't read about this, but it's a thought that I have, I'm sure other people have thought much more and written about it, that the person who has what it takes to create an entity hangs on past their best by date, past the time in which they're effective. Yes, they're tied to an original concept that, in fact, has evolved under their feet has evolved around them. And they haven't been aware of that evolution, that adaptation, that, that groups or movements or institutions have. And for a founder to step away, at what looks like the peak of achievement is avvery difficult thing to ask, or for a person to have the wisdom to see. And, and I that's something that's really stuck with me a lot. I mean, my husband, he is he was a funny guy. And and he used to say, leave, while they're asking for more, you know, get off the stage before the stage manager has the hook, and gives you a tug. So I think that that's, you know, that's one of the counterbalances one of the really important principles to test yourself against all the time.

Victor Montori:

So we are talking to Carolyn Canfield, this is the KERCast and it's such a wonderful conversation. There in the in the broadcast, we have opportunity for people to ask questions, and the questions have been coming up. So I would like to make sure that we we attend to those. And as we do, I would like to also hear from you, Carolyn, I mean, we the topic of our conversation has to do with how do we help care fit in the lives of patients. So as we, as we chat about this things, let's see if we can if we can get to that and see how you see, as you do, I really appreciate your notion of cruelty expanding to clinicians as well, the one of the challenges, I mean, that you've made reference to why we revolt. And one of the issues that became clear in writing that was that the system is not just capable of cruelty to patients, but oftentimes cruelty to the clinicians. And it's not, I think, very common to see a patient advocate that actually has enough capacity in your heart to include also the challenge of those at the front line, one of the one of the questions that is recurrent in this conversation has to do with the notions of opportunity cost maybe or the cost of becoming involved. We live in a society where the citizen involvement sometimes is considered just consumer involvement. You know, if you don't agree with something, don't buy it, if you don't like that program, don't watch it, if you don't, you know, and this notion that the only way you can, you can have a voice is as a consumer and not as a citizen. In healthcare, there's real costs that are perhaps even monetary, you know, financial costs they are costs of reputation of speaking up, becoming involved and people are afraid that if they keep doing that, that there is a personal cost as well that you get, you know, bogged down and beat up and tired. And, and, and, and maybe these are stories that people tell themselves not to do it. But are these real issues and how you handle those issues?

Carolyn Canfield:

I think they are issues, I think, you know, singling yourself out, can make you a target for a lot of things that you actually aren't responsible for. Or that that, you know, it's not something you can do anything about. There is a lot of frustration in our complex society, and especially around medicine where the emotions, the emotions about unfairness and access and undue suffering and injustice. It's all around us. So when there is that frustration, anyone who singles himself out can be the target. I don't you know, I think I think one of the most one of the partners of humility is generosity.

Victor Montori:

It is one of the principles so far of our unit as well.

Carolyn Canfield:

It is, it I learned about it in a very different way. I guess I'd practice generosity as maybe a bit of a reflex, because of my sense that in earlier life that I, you know, I didn't know anything and you know that giving other people space and, and and then gratitude expressing gratitude easily being comfortable with with that wasn't difficult for me but but the idea of generosity really didn't come into my consciousness until after my husband's death and and I couldn't find words to describe the tension that I felt around having this compassion for people who had delivered poor care and precipitated his premature death, that the more I learned about the medical side of his care, the more I realized the omissions and failures, the failure to connect up people, the failure of specialists talking to each other, of anyone taking responsibility for the whole patient, so on and so on. But my my emotions were, was devotion and gratitude and, and, and how could I rationalize this, it didn't make any sense. And, and then I read, and I read a great book, a sociologist from Calgary, actually Canadian, Arthur W. Frank, and he gave me the words, he gave me the words to describe what I could not explain to myself. And that was that in therapeutic relationships, we have a bond of trust, and it's reciprocal. And there is built into that kind of vulnerability. But if I trust you, as my doctor, the great endocrinologist, Dr. Montori, I have heard that you're, you know, you've got all this training, I have, I trust you, because you're you're the doctor. And you know, we do that we presumptively trust, we as patients do. At least that's the starting point. And for you to accept that trust, you have to trust me, you have to trust me that I'll pay attention to you. And that I'll learn about myself. And that I'll form a collaboration with you, in order to help myself and your vulnerability has, in some part to do with your self image about who you are as a person who can help. But also the vulnerability to my rejection of you my or, and it may be the impersonal rejection, my failure, if I don't thrive, if I deteriorate in your care, you know, I have trusted you. So there's this funny exchange of, of trust and and it's reciprocal about vulnerability that binds us. And and that that relationship of trust is to me what what relationship based care is all about.

Victor Montori:

And so if that's, that's what feel, that's what, are you, are you telling me that this was what feels or prevents the, sort of, is the costs of involvement?

Carolyn Canfield:

I think it was understanding No, I'm coming. It's a couple of generations away from that I'm lost. So understanding that healthcare is about trust, and that health care is about this, this tie we have to each other, that this began to explain what I craved from a system that had failed my husband, I craved a reason to reestablish trust, that trust had been betrayed. It had been, you know, that Nick's confidence that he was getting great integrated care that was seeing the whole person that that didn't happen, that I was failed in my commitment to that medical model. And, and what I began to see is that the way to understand my craving for reestablishing trust was really about my compassion, with the players in this extraordinary drama. That no one went into this with betrayal on their mind. And yet the way the relationships were embedded in a system of specialties, and isolation and fragmentation, the model of care is what killed Nick forget about the biomedical reasons. It was a model of care that did not meet the patient needs and that did not meet practitioner needs. So this this understanding of, of system level failure, not individual failure, drew from me this response of generosity, just, you know, enormous generosity now, when you when you lead with generosity, I didn't come into healthcare advocacy angry, because I think in fact anger is, is maybe the frustration with that betrayal, that experience of betrayal. And you the angry person wants more than anything else, to put the fire out, and not be angry and to re re establish trust. So I came into the idea of being an activist in healthcare with leading with with generosity, leading with curiosity, leading with with humility, and it's pretty hard to attack a person who has those attributes. So if someone comes to me and says, You've got it all wrong, the system you know, they're they're all idiots or it's big pharma or profiteering off, It's possible. I think it's more complex than that, though. It's, there's, there's a lot of experience to go around. And I don't have that person's experience. But their ways of me seeing the emotions that get in the way of knowledge as as having their basis in this trust relationship. That's the foundation of...

Victor Montori:

So the, Okay, so I think I got it. So you think that the there's a little Teflon that comes from the way you approach your advocacy. Well, I presume that for people that are say that have jobs within healthcare, that the opportunity to take on that advocacy, even with the best values, and the best disposition, has a cost. I presume that's where the courage comes in?

Carolyn Canfield:

Well, there's risks of course, and, you know, nothing ventured, nothing gained. I mean, there's something to taking a calculated risk, and believing that you can, you can justify that risk with the benefits. So your words as as outspoken, will attract others, you won't be alone. And I think people are afraid, afraid of people are afraid of, of isolating themselves. And I think it's quite the contrary, when you when you do speak up, there are others who would who would be at your side.

Victor Montori:

Yeah. And I think that we had a question that somebody said, you know, it can be lonely here. But I think your point is that that disposition that you bring, that charisma that you have, in addition to that disposition, is quite attractive, and I think brings people forward, one of the questions we're getting has to do with forming those communities that end up you know, not only responding to your call, or that you end up representing their voice, but forming around these issues, perhaps not in the island of geographic Island, but sometimes in the island of issues or in the, in the islands of practice within healthcare. And one of one of the questions we're getting has to do with that story you told about this hundred year old woman passing on this, this coin to this baby. And these these rituals, these tokens, these symbols are the stories that bring the communities together. What rituals, what tokens, what stories could we use, do you think to reinforce in healthcare, a sense of community? Another question is that saying, look, the fact that we lost that sense of, they feel that there's a loss in the sense of community, the fact that we lost, it is not a, it's not entropy. You know, there's been a systematic undermining of and of community and the, you know, there's a question about, you know, who's to blame for our departing from a sense of community. So what are the rituals that form it and what are the things that tear it apart?

Carolyn Canfield:

Well, okay. Yeah, I think the stopwatch, it's the industrial model, it's the assembly line. That is so contrary to anything about helping people. People come in it with every diversity. And in order to understand and appreciate individuality, you need time. You need time to, for two people to learn about each other and to build that relationship of trust. You've got to have that, that learning front end. So one of the challenges and and I get to teach in the medical school and in the nursing school here at the University of British Columbia, it's, it's a it's amazing thing to have the next generation of healthcare practitioners before me, and you know how much I want to influence them. And one, one idea that a friend of mine who's, who's now a doctor in Wales, but when he was a medical student, he he was horrified when he saw his fellow students begin to see the patient as, as an object of fear as danger. You know, and I think it was the lack of confidence of the students that they, they felt they'd be judged on their first their preliminary, their early contact with suffering with, with challenge, when they didn't know what they were doing, or felt they didn't know what they were doing. So so he thought this was terrible. And he started a project that I've gotten to know something about, and I've extended it into a lot of the, the teaching that I do, and that's learning how to ask open ended questions, and then how to listen and practicing that all the time practicing learning skills. So it started out in in Andy, Andy Carson Stephens' project, through plan, do, study, act learning cycle developed among medical students. What can I do to improve your care today, the most junior person can go to a patient in a facility and ask a question like that. What can I do to improve your care today? And then listen, listen, for patient values. It's a way of what matters to that patient, it might be quite trivial, but indicate something that's medically important. Like, I'm thirsty, can you reach the water jug? Well, is it a question that the water jug is out of reach? Is it a question of dehydration and a medical issue? And there are all kinds of ways to explore it from there. It may indicate a system problem, can you tell me when I'm going to be discharged. And then the student has a chance to explore some of the system problems and and the hierarchy and the decision making and can learn through the through the eyes of the patient, through the priorities of the patient. So what can I do to improve your care today is kind of a starting point for learning how to listen to patients. And, and then there are a lot of other questions that I've begun to develop as well. What's, what's one thing you wish you'd known about this medical encounter. Don Berwick, the founder of the IHI...

Victor Montori:

I have to, I have to interrupt you because I want to, I know you're going into that, but I want to understand so so we were trying to you know, the question was really about how do we build community? Right? And, and I don't want us to run out of time without, because I think many, many people that are attending and listening to you are thirsty for a community of care. And, and they're dying to hear from you about what is it?

Carolyn Canfield:

Well, I think it is about learning to listen, finding the common ground and building humanity in those relationships. If I listen to you, it reflects my respect for you. And you know, the power of that when we get to the medical crisis, when we have the lapse, that, you know, the challenges in that doctoring relationship, that foundation of respect of my knowledge that you are treating me with dignity, the dignity with which I treat you. So it so that's not wasted time, investing in those open ended questions. You know, what's one thing I should know about you? And listen to what the patient says. This establishes our common humanity and it establishes a relationship with trust. You start small, it could be with your colleagues on your medical team. It could be with your peers in a patient advocacy group, to have the well to exercise these, a lot of these elements we've talked about today, humility, curiosity, and build trust, build bonds, you don't know where and how you're going to test them. You can't be specific, you can't say well, you know, here's the small area, I'll trust the person. It is about human relationships and, and and to have the resilience for the unexpected, but what's around the corner that you couldn't anticipate is based on that foundation of basic human bonding that's community building community.

Victor Montori:

Carolyn, it's, it's it's been a phenomenal, phenomenal pleasure to listen to you today. The wisdom of the depth of your understanding of what it takes to become a citizen advocate, in your case, a citizen patient. And to make a difference through all those values that you've espoused and discussed today, I think has been very helpful to people that have been listening and, and to me personally, this notion that I mean, you're I've always had this envy for people who lived through the 60s. And those were tumultuous times where a lot of things were built and changed. And we have to now recognize that this is a year too that might, has the enormous potential to be like that, and to have someone like you telling us that the job what the job is, which is to give voice to those that don't have it to get them into rooms where they don't have access to be inspired by a sense of justice. And excited about curiosity, about learning, about dignity, respect, and dignity and trust, eventually love is incredibly inspiring. Thank you, Carolyn, for joining us in the KERCast and to everyone that joined us in the in the broadcast and asked their questions. While we have the last slide telling folks about our upcoming talks, what's next for Carolyn Canfield?

Carolyn Canfield:

Ah, well, I'll be tuning into the next KERCast. I mean, you know, I'm always curious, I want to learn, I have no idea. Victor, I you know, who knows? Who knows? I, there's, you were talking about the cauldron of 2020. These are all opportunities. I mean, we may be we may feel like they're crises and that we struggle through tolerating cruelty, tolerating challenges, but there are there are 1000 doors opening in in all of that. And, you know, I don't know I, I just I I love, I love working with people who are excited about what they're doing, and that same ways and it's been, it's been such a pleasure having this hour with you and, and I'm so glad if it has helped others.

Victor Montori:

I know for a fact that you are not going to be sleeping through this revolution.

Carolyn Canfield:

Thank you, you either.

Victor Montori:

Thanks, everyone for your attention. This has been the KERCast, brought to you by the Knowledge and Evaluation Research Unit at Mayo Clinic and be sure to tune in to our next our next opportunity Carolyn, thank you so much.