EP. 120: “UBUNTU” AND THE SOUL OF MEDICINE

Jul 9

WITH CHRISTIAN NTIZIMIRA, MD

The founder of the African Center for Research on End-of-Life Care shares how witnessing the genocide against the Tutsi in Rwanda during his early years drove him into a career in medicine and how the philosophy of “ubuntu” shapes his palliative care work.

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Episode Summary

The Genocide Against the Tutsi, occurring in Rwanda between April-July 1994, was a devastating episode of mass violence in which nearly 1 million people were killed over a period of 100 days. Fueled by longstanding ethnic tensions, political power struggles, and a deep seated history of discrimination, the genocide saw members of the Tutsi ethnic group slaughtered indiscriminately by extremists of the Hutu ethnic group.

Growing up amid this chaos, Christian Ntizimira, MD witnessed some of humanity's most horrific atrocities. Instead of turning away, however, he chose to enter medicine, a profession that would allow him to address the immense suffering he saw. Today, Dr. Ntizimira is a palliative care physician and the founder and executive director of the African Center for Research on End of Life Care.

In this episode, Dr. Ntizimira joins us to share his personal experiences with the Rwandan Genocide, his journey to palliative medicine after initially exploring a career in surgery, what palliative care means to him, what it looks like to honor the dignity of a patient, how he advocates better access to palliative care and chronic illness care, and his unique approach to medicine rooted in “ubuntu,” a philosophy emphasizing the universal bond that connects all humanity that is best summarized by the phrase “I am because you are.”

Christian Ntizimira, MD is the Founder and Executive Director of ACREOL, an International member of the Faculty of The Palliative Care Centre for Excellence in Research and Education (PalC), and former Executive Director of the Rwanda Palliative Care and Hospice Organization (RPCHO), a non-profit organization focused on home-based care in the City of Kigali.
Dr. Ntizimira pioneered the integration of palliative care and end-of-life care into health services rendered to Rwandan cancer patients and in community settings. He spearheaded multiple programs in Rwanda under which more than 1500 health care providers and community health workers have learned the principles of cancer prevention control and palliative care leading to a five-fold increase in the prescription of morphine, an essential pain medication.
From 2010-2013, he was the director of Kibagabaga Hospital in Kigali. He has advised several governments on national palliative care policy, including Burundi, Rwanda, and Senegal, on access to palliative care services. Dr. Ntizimira graduated in medicine from the College of Medicine and Health Sciences at the University of Rwanda in 2008, and received training in palliative care at Harvard Medical School’s Center for Palliative Care. He was named Young Cancer Leader by the Union for International Cancer Control in 2016 and Distinguished Young Leader by the Harvard Global Health Catalyst in 2017.
In this episode, you will hear about:
• 2:45 - How Dr. Ntizimira’s experience as a young person during the Rwandan Genocide inspired him to become a physician, and how he eventually found himself drawn to palliative care
• 14:25 - Dr. Ntizimira’s distinction between “treating the disease” and “treating the person”
• 20:22 - How Dr. Ntizimira teaches doctors to fully conceptualize patients as people instead of focusing only on their medical ailments
• 25:50 - The heart of palliative care that transcends cultures
• 30:54 - The importance of presence in palliative care
• 38:27 - What “reconciliation” means in Dr. Ntizimira’s approach to palliative care
• 47:17 - “Ubuntu,” an African philosophy emphasizing a shared connection among humans, and how it can revolutionize how we care for patients
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctors Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build health care institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across health care, from doctors and nurses to patients and health care executives those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine, we will hear stories that are by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Tyler Johnson: [00:01:02] The Rwandan genocide, occurring between April and July 1994, was a devastating episode of mass violence, in which nearly 1 million people were killed over a period of 100 days, fueled by long standing ethnic tensions, political power struggles, and a deep seated history of discrimination, the genocide saw members of the Tutsi ethnic group slaughtered indiscriminately by extremists of the Hutu ethnic group. Growing up amid this chaos, Doctor Christian Ntizimira witnessed some of humanity's most horrific traumas. Instead of turning away, however, he chose to enter medicine, a profession that would allow him to address the immense suffering he saw. Today, Doctor Ntizimira is a palliative care physician and the founder and executive director of the African Center for Research on End of Life Care. In this episode, Doctor Ntizimira joins us to share his personal experiences with the Rwandan genocide, his journey to palliative medicine after initially exploring a career in surgery, what palliative care means to him, what it means to honor the dignity of a patient, how he advocates for access to palliative care and chronic illness care, and his unique approach to medicine rooted in ubuntu, a philosophy emphasizing the universal bond that connects all humanity best summarized by the phrase I am because you are. We are particularly honored to have Doctor Ntizimira joining us here in my office on the Stanford campus.
Tyler Johnson: [00:02:41] Christian, welcome to the show and thanks for being here.
[00:02:44] Thank you, Tyler.
Tyler Johnson: [00:02:45] Usually our first question to our guests is what brought you into a career in medicine. And I know that tragically, in your case, the answer to that question for you can't be complete without also talking about the Rwandan genocide. And I think it's important to note that although most people in the United States have probably heard of that and know that it is an atrocity that happened, they may have very little cultural context for understanding what really happened and why. And so I guess my first question for you is really sort of two questions bound together. Yes. We want to know what drew you into medicine. But since I imagine that this will form part of your answer anyway, can you also help to introduce us a little bit to what was happening in terms of the Rwandan genocide and all of the difficulties that surrounded that as you were growing up.
Dr. Christian Ntizimira: [00:03:35] In 1994, during the genocide against the Tutsi... I mean, as you may know, especially during this time, uh, this is now 30 years after the genocide against the Tutsi, where 1 million people died in 100 days. I've seen unnecessary suffering and post genocide. I thought to be a surgeon will be the best way to contributing to rebuild the country. Those young. I was thinking what would be the best way? And surgery came on my mind because I've seen so many wounds and everything. And in that context, then I decided to go to medical school to become a physician. The genocide against the Tutsi. I think it was the last genocide in the century and the last century. And, uh, the The former government was really target, uh, group of population Tutsi and, uh, plan to kill them for who they are. And that started in April 1997 when it became now because the plan was already there for many years. And, uh, uh, and it's only when, uh, the former president died, when everything now exploded and, uh, during the genocide, 1 million people died in 100 days from April to end of July. Uh, and, uh, it was really, uh, I mean, uh, I don't know how to describe it. It's horrible. Um, there is no word to describe it. But the good thing is, since the country's started from a resilient spirit to rebuild, and now it's, uh, it's changed completely. And people now are proud to be called Rwandans.
Tyler Johnson: [00:05:42] I mean, I want to be very, very clear that the only thing I can say that is not even helpful, but hopefully at least accurate about that, is that I cannot possibly begin to conceive what it must have been like to be a young person, any person, but especially a young person in a place where something like that was happening, I I'm really sorry. I mean, I just that anyone has to witness such a terrible thing is just unimaginable. And I'm sorry you had to go through that.
Dr. Christian Ntizimira: [00:06:18] Yeah. I mean, I started I was 15 and we were not in Rwanda at that time. We were in, uh, DRC, Congo now, uh, the former Zaire. But, uh, it impacted in the whole region because when the perpetrators, you know, flew from Rwanda to the to Congo, that time was Zaire. And, uh, continue to do what they started already in Rwanda. So you can imagine it's A, B and C suffering in different ways physical, emotional. Uh, uh, social. Uh, that's going to give you a different perspective of life and, uh, try to think or rethink about the meaning of life itself.
Tyler Johnson: [00:07:06] You know, one of the things that is so striking to me is that in the United States, I think we have not entirely but largely succeeded in hiding, or at least seeming to hide many forms of suffering from the general populace. Right? In the sense that, for example, most people may have never seen an open wound, a serious open wound, because the moment someone has a wound like that, they're carted off to the hospital. And unless you're a, you know, a trauma surgeon or something, you just wouldn't see that, right? But I if I think about having been in a place where terrible things were happening sometimes right out in the open and where you were even at such a young age, a witness to so much immense suffering, it's striking to me that your reaction to that would have been, in effect, to say not, I'm going to run away from the burning building, but I'm going to run toward and into the burning building. Right? I am going to like, I need to be a surgeon so that I can continue to confront this suffering and do something to try to ameliorate it. And I'm just curious, do you have any sense why your reaction was to say, in effect, this is my calling, rather than I never want to see this kind of thing again.
Dr. Christian Ntizimira: [00:08:37] Honestly, I think it's, uh, it's coming from a different perspective. You know, I mean, it's difficult to avoid suffering anywhere because suffering will happen in anywhere, even if you have a social stability and you're working in a very, let's say, in the US, anywhere there is suffering, you know, in different will come in different ways, could be physically social, spiritual and, and, and psychological. It can come from work, from families, from friends, you know, from in different way. But I think the perspective is when you have, uh, exposure from difficulties, sometimes the best way is not to hide yourself, but saying how can you respond? What will be the response to the suffering? And if you consider yourself to be part of the solution, not part of the problem. So I think that will bring a different perspective on that sense. And this is why my understanding, because the country was, uh, you know, in 1994, uh, just after the genocide. I mean, we when we, we get in Rwanda, it was in August and everything was I mean, everything was collapsed. There was nothing there, you know, and this is why I was thinking, well, maybe to be a physician would be a best way to, to rebuild, because it will be another opportunity to be part of that. So this is why I was thinking medical school will be the best way, and especially surgery, because, uh, as you said, uh, it's, uh, you know, when some people don't never see any wounds, but, um, uh, I've seen a lot. And then I say, like, maybe that will be the best way and surgery will be the worst way to contribute on that sense.
Tyler Johnson: [00:10:26] So before we get more into talking about maybe some of the philosophy that's inherent in some of what you were just discussing? Let's first sort of trace your path. So you decide as a young person that in response to this suffering, you want to become a surgeon. And then where do you go from there?
Dr. Christian Ntizimira: [00:10:44] I went to medical school and I did my med school in Rwanda. So when you finished medical school in Rwanda, you need to you have to go to the district hospital. After that time, you can go and take your residency program in surgery, ops and gyne, internal medicine and pates. So, um, during my time in district hospital. But you have a choice as a general practitioner, you have a choice to stay in a surgery department, peds, internal medicine out of some kind. Even if as a general practitioner, you rotate it in different departments in, in the hospital. But I went directly to the surgery department because I said, oh, let me just start there. I'll be supporting the senior surgeon, you know, doing some small surgeries. Sure. And until you know when my time will come, I hope to go to do residency. Yeah. During my time, I met a young guy, um, 24 years old. He was diagnosed with, uh, liver cancer. Advanced stage. Okay. His pain was totally different with all type of pain. I used to treat him because this pain was really mixed with suffering. And I couldn't prescribe morphine. But because there is a myth, that's time that if you prescribe morphine, the patient will die and you'll go to jail. Mm. Yeah. So I asked, you know, I check on patient's chart and we receive. I mean, this is only tramadol, ibuprofen. You know, those simple painkillers which are really available.
Dr. Christian Ntizimira: [00:12:33] But the sad story is mum came to me and kneeled before me and ask if I can just do, uh, something which can help a son to sleep and wake up no more. I mean, that that image, you know, was kind of a shock, shock in my life because I felt that I felt twice. I felt that as a physician because I couldn't prescribe morphine. Mhm. But also I felt as a Rwandan because, um, in our culture, when you see a young person kneel before young, uh, a healthy person, kneel before young person that's been culturally you felt. So then I starting to question myself is really surgery. The specialty I want to do is, uh, what is the reason I spent so many years in medical school? And if you just my role is just within six people are dying. So what is the reason to be called a physician if I cannot even relieve pain for those who are dying? And what is the reason to do what I'm doing? If it's not harmful to the patient and their family members. So, um, after, um, weeks, months of reflection, the government work organized, uh, training in palliative care. So when I went to that training, I, I discovered something different, a different way of thinking, a different way of taking care of the person. And I stopped completely my dream to become a surgeon, to a new, passionate as a palliative care physician.
Tyler Johnson: [00:14:25] Before we get to the decision to go into palliative care, i want to go back for a moment. So. So you arrive at the district hospital, and as you're working there, you're brought to take care of this young man with advanced liver cancer. One of the things that you said a moment ago that really struck me was that you said that his pain was different from any pain that you had seen in anyone before, even though, as we mentioned a moment ago, you had been exposed to a great deal of suffering even at that very young age. But then the thing that you said distinguished his pain from that, that you had seen in other people before, was that it was mixed with this great degree of suffering that was unlike anything that you had previously seen. Can you tell me, I guess two things. The first one is what was it about that suffering that was distinctive? And then on a maybe a more sort of philosophical note, do you think that there is a difference between pain on the one hand and suffering on the other hand, as sort of categories? And in general, what do you think the difference is? So in him, what did you notice? And then in general, what do you think is the distinction between pain and suffering?
Dr. Christian Ntizimira: [00:15:40] Yeah, I think his pain was, as I said, was pain was mixed with suffering and um, his pain and suffering was really on my sense brought me the same suffering. You know, I saw before I going to medical school when I was I sing in post-genocide society, you know, on the same image, same suffering, same people, you know, so there was kind of a correlation between the two. So then I was questioned am I going to face the same suffering? I was planning to release? And yes, for me it was totally different because the pain I used to treat was totally different. With the pain, with the young guy, with the suffering. Because I think there is a distinct suffering is more deep than physical itself because it's connected to the sense of humanity, dignity. The young guy was isolated, not connected because of that pain and the suffering to be alone, loss of dignity and sense of humanity. Plus the physical pain was a double burden from on my understanding. And that's really touched me because, uh, I expecting just to treat a physical pain, but I just discovered it was more than a physical pain.
Tyler Johnson: [00:17:04] Yeah. You know, as Henry and I have had many hours of discussion about these matters over a number of years now, I think one of the things that has become clear to us, and obviously, I can't speak to anything about how medicine is practiced in Rwanda because I've never been there and never practiced there, but at least here it often feels so. I do a lot of teaching in the medical school here, and when I think about the teaching that we do in the medical school, I was just telling some medical students I was working with last Friday that a lot of the way that we approach teaching in medical school is, in effect, learning to distill a human down to, on the one hand, a set of organs, and on the other hand a set of problems. Right. And you have to understand the organs so that you understand how all the physiology and pathophysiology works together, so that then you can make this problem list, which is, to be clear, an efficient way to think about what's going wrong and how are we going to fix it. But the other issue with that is that at some point you become So I feel like we teach our students in a way to become so fluent in distilling people down to that core set of sort of organs and problems, that then it becomes at some point, we inadvertently end up giving them the idea that that's all a person is, and that once you have fixed the organs or fixed the problem list, then you have attended to all of the patient's needs. But what I what I hear coming through in the story that you tell about the young man in liver cancer is that even if you could have, you know, had a some magic wand, morphine or whatever else to immediately fix the physical pain, there was a deeper spiritual or existential or, you know, whatever, a deeper wound, even beyond the physical pain that needed to be attended to. Yeah.
Dr. Christian Ntizimira: [00:19:09] Because, uh, I've learned from, uh, from that experience is that, um, treating the disease and treating the person are two different concepts. Yeah, because you can treat the disease without treating the person. But if you treat the person, you must be treating the disease as well. And unfortunately, most of the medical school are really teaching students to become a good physician for the disease, not necessarily to the persons. And this is why created gaps now and the modern medicine unfortunately losing his his soul. Yeah. And there is a big disconnection and a gap between physician and patient and physician and family caregivers. And that that was part of the reason, you know, I give up from my dream to become a surgeon. I have a lot of respect for surgeons. Me too. Yeah. But, uh, I was losing, you know, that sense of the soul of medicine itself. And the question myself, what the reason to become a surgeon if it's only fixes the disease.
Tyler Johnson: [00:20:22] So we'll get to the rest of your professional journey in a minute. So we'll talk about some of the ways that you do this. But for now, just suffice it to say that you not only did you go on to learn palliative care, but you do a lot of teaching and organizing and, you know, you're sort of preaching the gospel of palliative care, so to speak. So as a person who does a lot of teaching and recognizing, as you just put it, that it sounds like in Rwanda, the same as here in the United States, that there is this tendency to sort of reduce patients down to problems and whatever. How do you try to teach budding doctors, like Like how do you unteach that right? How do you teach them to see people fully as people and not to conceptualize of them only as problem lists or sets of organs?
Dr. Christian Ntizimira: [00:21:11] I think what we did, uh, recently with, uh, the University of Rwanda was to integrate palliative care for undergrad students because trying to teach palliative care at the end of the cycle of medical school, it's too late. Yeah, it's like starting, you know, uh, treating advanced stage cancer. Yeah. It's too late. You can give morphine, chemo, radio. It's just palliative care. But if you starting early, you change completely the paradigm of care itself and the power of that apart, introducing, you know, palliative care for undergrad students. We brought also the social culture perspective because it's really important a person is a person because it's connected to its culture and culture. We talk about identity as as well. And that is something really important because I can treat an American as I treat a random, it's totally different. The context matters. American has a different way of thinking. They were thinking about patient autonomy, my rights, my control and my everything. But in Rwanda, it's totally different. You have the patient autonomy, you have the community responsibility. And both for decision making. So context matters on that circumstance. So if the medical student can understand that, that will change completely to understand when I'm going to treat the person, I'm treating the person as, as treating the disease as well, but not necessarily if I'm going to fix, you know, the problems, that I'll fix the problem with the person and to create again, that relationship between this is also part of I mean, we'll talk later about this is also part of the ubuntu philosophy and the ubuntu philosophy. The most important thing I like about the ubuntu physician system within the palliative care context, it's reconciliation. Yeah, we need to reconcile the patient with this disease as the patient with the health care professionals and the patient with the community.
Tyler Johnson: [00:23:13] So I want to be able to get into the heart of that. So before we do that, just to set the context, to set the framing for us. So you're on your path to become a surgeon. You have this sort of fateful encounter. You make a decision to give up your dream of being a surgeon and instead to become a palliative care doctor. Yeah. Take us from that decision to become a palliative care doctor, and then sort of just give us the highlights, sort of professional highlights that bring us from that point until up until now. Like, what have you done from then?
Dr. Christian Ntizimira: [00:23:42] Yeah. Well, you know, I when I've, uh, I finished the training to become a palliative care, um, trainer in the country. Then, uh, I was starting to integrate palliative care in the hospital. And, of course, you know, there is a part of the challenge because people could not understand why you so focus on palliative care for people already condemned. Because people, the most of people say there is nothing to do. And on my sense they will have something to do. But I was so curious to understand how can I do more in that context? I was looking for how to create some knowledge and skills in palliative care, and there is a good program, a fellowship program in Harvard Medical School, PS up, palliative care, education and practice. So I went there, uh, and I was lucky, uh, to be selected and, um, spend, you know, time there understanding, you know, what is palliative care different, you know, perspective of palliative care. Then I come back on the country trying again to develop the context, understand about the context. And part of that, I think I have to be honest, one of the mistake I did was to try to duplicate the model from Boston in Rwanda. And I thought I failed. I failed many times because it was very naive to bring a different context. It's where I've learned about how context matters. Then I went back again in Boston for a master's program in global health and social medicine. Then I've learned about how historical context matters, and why it's really important to understand the context and even the historical context before to set a program, and in that context are starting to explore what is. The philosophy can help to bring back the sense of humanity and the dignity of the person, not necessarily focus on the disease. This is how we exploring. Until now, we are exploring the ubuntu philosophy on that context.
Tyler Johnson: [00:25:50] Yeah. You know, I think it's nobody can ever understand how provincial they are until they start to learn more and more and more. And I feel like in a lot of ways, life is just this unending rediscovery of how provincial my old thinking was, right? And I remember that one of the awakenings that I had along those lines was when I was in medical school. And you alluded to this briefly, and I say this by way of framing a question that I want to ask you a series of questions I want to ask. But I remember when I was in medical school, I just had it drilled into me that the fundamental ethical imperative, I think it's pretty true to say that that's what I was taught in terms of patient care. Is patient autonomy right. And that there was this sort of you almost had to be obsessive about making sure that nothing was infringing on patient autonomy, right? If there were family members who had different ideas about what they wanted for the patient than what the patient had themselves, then you needed to put them in a different room or something so that you could have the patient alone unaffected by what other people thought or said to make their own decisions, right? That was kind of the paradigm. And, you know, being a dutiful medical student, I just thought, okay, well, that's this is medical ethics, right? Is we have to figure out how to guard patient autonomy. That is the most sacred thing that we have to, you know, take care of.
Tyler Johnson: [00:27:22] And it wasn't until, you know, that would have been I probably started to, uh, take on those ideas in, I don't know, 2007, something like that. And it wasn't really until probably until I became an attending. So, you know, probably whatever, ten years later that I started to recognize that that was a way of thinking about it, but not certainly not the only way and not even necessarily the best way. It was just the way that we in the United States tend to teach about that. Right? And so I have two questions that I want to look at in sequence. The first one is so much of the journey that you've been on, and a lot of the pioneering work that you have done is to try to take some of the tools or broader understanding that you gained in your palliative care training and then figure out what do those mean and how should they be applied and and how should they even be understood in an entirely different cultural context? Right. But before we get to the way that you've done that in the cultural context, which I want to spend a lot of time talking about that. But before we get to that, like, what do you understand to be the universal goal for palliative care? What is the the heart at the center of it? That is the same whether you're in the United States or Europe or Rwanda or Australia or anywhere else.
Dr. Christian Ntizimira: [00:28:51] Relative. It's just a response to the suffering. It could be physical, social, spiritual, and the emotional and psychological. You just have a response to the suffering. You can go in Asia, in Africa, in, uh, in Europe, everywhere. Everybody, when they suffer, they need the response and the palliative care. My understanding is the response to the suffering. But unfortunately, from some side of the world, palliative care, It's only when they focus on physical aspects and then if the response to the physical suffering, then that is positive care, but it's not necessarily the same. And my examples, what I can say, uh, most of patients and family members, our response, even if you can't get sometimes we are lucky because now you run the we have access to morphine. But many years ago, our presence was the response to the suffering. And and the patient and family were so happy. We were just happy because you are here and that is the only response they they were expecting. But some friends from you, as they say, no, this is not palliative care. And I say, why. Because, oh you don't have morphine, oxycodone, hydromorphone and blah blah blah and everything I say. Yeah, but this context matters. It's totally different. So from Asia to, uh, to global, north, global South, East and west. Palliative care, just the response to the suffering. And unfortunately, because of the terminology and the background and all the politics behind people still thinking that palliative care equals to end of life care, which is totally wrong. But when I'm doing palliative care, I just I'm just responding to the suffering, either for the patient or for the family or from the community.
Tyler Johnson: [00:30:54] So you mentioned there was that some people in the United States responded with sort of frustration or disbelief when you suggested that you could do palliative care without opiates, for example. Right? What's so interesting to me, though, is that, in effect, what I hear you saying is that your response was to say, look, we may not have even medicines, even analgesics to help ease the pain, but we have our physical presence and that physical presence and spiritual and emotional, that holistic presence is meaningful to the patient and their family members. What's so interesting to me is that there is a lot of data in the United States to demonstrate that doctors are spending increasing amounts of time in front of computer screens, where the electronic medical record is and decreasing amounts of time physically with the patients. Which is just to say that we probably have gotten past the ironic tipping point where you're talking about a care that involves presence in the absence of opiates or whatever else. And here I fear that we often have care that involves the presence of opiates and the absence of physical presence. Right. So it's doctors who order pain medications on their screen and yet are not or only for a very short time, are actually physically present with the person who is suffering.
Dr. Christian Ntizimira: [00:32:19] Yeah, I can give you an example. You know, um, if you see the data in Africa, how many country has a policy on palliative care? I think they are less than ten. How many countries do you have access to opioids, strong opioids like morphine. And you need to remember that accessibility and availability is two different. It's not the same. Sure, sometimes it's available but not accessible. So those countries, despite all those challenges, palliative care is done in the ground. But we need to understand the context. There are some countries social and emotional pain is worse than physical pain. Yeah. Which is totally different in the US because people don't want to have a physical pain, but they are. They can deal easily with the emotional and social pain. My experience is in. Mm. When I was shadowing my mentor Erica Cao, to see patients dying alone but surrounded by so many pictures, I was like, why? Where are there? Where are those people? And it seemed like the patient was happy with friends and family in the picture. And I was like, okay, where are those people? You know, they tried to explain to me, you know, from East Coast to West Coast, people are really busy. And I said, wait a minute. From east to west, there is a flight, right? So, yes. So how come can you explain me when someone is dying? You are part of the picture. The photo in the room of the patients. But you can't come on the last minute. On the last few weeks, that person was dying.
Dr. Christian Ntizimira: [00:34:04] Yeah. Understand, I couldn't understand that was like why? And this is why. My question was, how can you bring back those people in the room? And I share my my small experiences in Rwanda. We don't have pictures because we have people. This is why our Tyler. There is a need of space of collaboration and exchange. It's not only one way because my question is, how can you bring back those people in the room? Because we have that experiences to create or reengage, engage the community? It will be something people can learn from us, as we have learned also a lot how to deal with the physical pain, opioid, how to use opioids safely, how to use hydromorphone hydrochloride. You know, all those formulations can be something I can propose and say, maybe we can move from morphine and use oxycodone. Always have a space to learn best practice from each other. Not only one way on that sense. So being there it's not a substituted from not have access to morphine or stronger medications. But being there is also part of the palliative care because it's a response of suffering. Because even if we have now Rwanda, we have now access to morphine and is free of charge, doesn't mean we don't longer be there because we are still there. Even if morphine is the access, because the spirits is still the same. Respond to the suffering, not only physical, spiritual, and emotional. I mean.
Tyler Johnson: [00:35:49] That brings to my mind two strains of thought. One, I really do think that the lack of presence, like the the void that that creates in the care that we offer to our patients, cannot be filled in any other way. Right? You can have all of the medicines in the world. You can have the most advanced and sophisticated health care, enterprise and apparatus, but nothing can replace human presence. I'm nothing. I am deeply touched on in that vein to think about. We were interviewing a couple of weeks ago, a woman who was a doctor in Manhattan when Manhattan got hit by the Covid pandemic in spring of 2020, and that was bringing to mind the fact that back at that point, we very soon got to a place where, you know, hospitals became like fortresses. Nobody was allowed inside because there was so much fear about contagion. And so it was just the doctors and nurses who were on shift, but nobody else was allowed in. And I think that when that happened, there were nurses who would stay after their shift had ended, so that they could sit at the bedside of people who were dying, because they were the only people who were allowed into the unit at the time. And that, to me, is such a deeply sad but also powerful and beautiful reminder of the importance of presence. Right? There was just that. There was nothing that could replace the presence of another person at the bedside of a person who was dying.
Dr. Christian Ntizimira: [00:37:32] Yeah, not nothing can replace that. And it's why in the beginning, as I said, the modern medicine is losing its soul. Yeah. So we need to bring back the soul of medicine. Otherwise our professional will be the most desperate place for patients and family members. So this is why part of my role. Because I think, uh, as I said, um, I'm always teaching my students and the University of Rwanda, I'd say the role of physician has to be more than a prescriber. Right? The role of physician is also to reconcile. We have this role of reconciliation, and we need to reconcile the patient first, the patient with his or her disease, and then we reconcile the patient with community. We also reconcile the community to the patient. And also we reconcile ourselves also to the community and the patient.
Tyler Johnson: [00:38:27] So if palliative care is the doctorly response to human suffering, as you has, as you have articulated, a lot of the pioneering work that you have done has been to try to articulate what does that response look like within the cultural context that is native to your home? Right. And I think that at least, you know, from my perspective, one of the reasons that that these are such powerful ideas is that just, you know, as I was talking about earlier, that life is just a, you know, constant rediscovery of how provincial your old thinking was. Oftentimes when I learn about how ideals like this are applied in other contexts, then all of a sudden that's one of those moments where I think, oh my gosh, how did I you know, I had never thought to see anything like that before. So let's start with this idea of reconciliation, because I think I'm probably safe in saying that nobody who gets their medical education in the United States, I shouldn't say nobody, but I've talked to a lot of people and spent a lot of time teaching and whatever, and I have certainly never heard the word reconciliation mentioned in any aspect of anything that any doctor does in the United States.
Dr. Christian Ntizimira: [00:39:43] There is always a place to start.
Tyler Johnson: [00:39:45] So the first question I want to ask is, before we get to what the reconciliation looks like, if one of the main roles of the at least the palliative care doctor is to facilitate reconciliation, that suggests that first, there was an estrangement. Right? So I'm an oncologist, right. So let's say that I'm I'm taking care of a patient who is a 60 year old woman who has metastatic colon cancer, has had it for a long time, doesn't really have any good anti-cancer therapies left, you know, and is looking at the prospect of facing the end of her life, let's say, in the next few months. Yeah. So what is the estrangement there? Like what is what? Or from whom is that patient? Estranged?
Dr. Christian Ntizimira: [00:40:26] Good question. Short story. Ten years ago, I think 5 or 6 years ago, between 6 and 10 years ago, I got a scholarship to go to UK for doing a fellowship at Saint Christopher. I think we consider Saint Christopher Hospice as the Vatican of of palliative care.
Tyler Johnson: [00:40:48] I'm going to ask you later who the pope of palliative care is, but we'll get to that later.
Dr. Christian Ntizimira: [00:40:52] Yeah. Because because I read so many books of Cecil Saunders. And for me, she was the pioneer of the modern palliative care. So I was like, I need to learn from Saint Christopher. Then I can be able to apply it. I don't know Donna, when I went there, spent a month there. Then we had a conversation with the new CEO, the new CEO, Kim. And um, it was just a few days before we left and she said, what would be the take home message from the time you spent with us? And I told her, I have two answers. I have a political one And I have one is honest. So which one works for you? Okay. And, uh, she said, uh, because I'm new in Saint Christopher, I will take the honest one. So. Okay, I said Saint Christopher is the best place to learn palliative care, but it's the worst place to die. Of course, I was, uh, I was expecting. She will be slab. You know, I was, I was she will be crazy. She just opened her eyes and said, what? Can you repeat again? I say yes, Saint Christopher is the best place to learn palliative care. But is the worst place to die and say why you say that? I said, you know, from someone who came from a country post-genocide society, when you left 1 million people in 100 days.
Dr. Christian Ntizimira: [00:42:19] I came here not to learn about how to use morphine and blah blah blah, because if we get the same treatment, we'll be able to use in the country. But I came here to learn the spirit of Cecil Saunders, which was focused to bring back the sense of humanity we lost during the genocide. Mhm. But I didn't find it. I find people have a list and they check. They just tick and check and check and check from morning to evening. It's just a checklist. So I miss that part. So just to respond to your question, when I'm thinking about reconciliation and who is the stranger, I think on that part you have two groups. You have the patient, you have the family, and you have us and the and has my experiences now since I was starting to do palliative care. One reconcile the patient with the story that is the most important thing. Listen, the story of the patient. Mostly we don't listen the story of the patient because we listen the story of the disease. Second, listen the story of the family members. This is why when I have the patient, I'm always calling family meetings. And of course, in Africa, when you call a family meeting, how many people do you expect? I don't know.
Tyler Johnson: [00:43:47] More than here.
Dr. Christian Ntizimira: [00:43:48] I'm guessing it's ten, 20, 25. And I always say that the last meeting, I had a meeting, uh, uh, I think last year, 40 people came in the room. Oh, wow. Yeah. So my American friends say this is not a family meeting. We call it a workshop. It's a workshop. So it was 40 meetings. Why? It's 40 people. Number doesn't matter. It's about the connection to the patient. Sure. And you, you have a story for 40 people. You have a 40 expectation, but you have one common sense of responding to the suffering. And that has to come from that story. Then you have my own story. By listening those two stories, by what will be the best choice, what will be the best advice? So by combining the three stories you play a role of, reconcile the patient, the community and yourself for the sake of dignity and sense of humanity, of your practice. Mm.
Tyler Johnson: [00:45:03] So from your perspective, because even in the journey of illness and then finding some healing from the the deeper sort of psychic or spiritual wounds, even if the disease itself can't be cured. But because so much of that is a question of connection, the very act of witnessing to the story is in and of itself, healing.
Dr. Christian Ntizimira: [00:45:32] Yeah, it's a big step you cannot imagine. I remember when I was, uh, I gave the idea to invite family meeting in the hospital. Everybody said, no, don't invite family. Meeting family are challenging. You know, they will. Everybody will say, no. Bad idea, bad idea. But I asked them a question. Who paid the bill? Who feed the patient? Who taking care of transport of the patient. And it's the family. So how now you say family has to be excluded? It's why I'm saying in the context of us, it's a patient. Autonomy in our context is a patient autonomy and community responsibility. But when I was studying invite the family, I was starting to listen their stories.
Tyler Johnson: [00:46:21] Yeah. You know, it's so interesting because I mentioned this continuous process of recognizing my own provincial thinking, which of course, then I know that ten years from now, what I'm thinking right now is going to be the provincial thinking, but whatever, that's life. But it's so funny to me because once I recognized that this idea of patient autonomy as if it were the only thing, was once I realized how myopic that way of thinking was. Then I started to see that almost everything in the society, the wider cultural mores in the United States, is that way, right? Like if you listen to our political discourse, for example, almost everything is phrased in the parlance of individual rights. Yeah, right. And so whether you're on the left or on the right, the discussion is all about who has a right to do what. Right.
Dr. Christian Ntizimira: [00:47:16] Mostly.
Tyler Johnson: [00:47:17] And it's just so striking that there is very little discussion of what is our societal responsibility. Right. And I think that this then comes into the way that we approach medical care as well. Right. It's so interesting to talk about the right to medical care. And I'm not saying that that's wrong, but what I am saying is that there is a very different suggestion between I have a right to health care versus we as a society, as a community, have a collective responsibility to care for the sick. Those suggest, in some cases very different approaches. You've mentioned the term multiple times, but can you talk a little bit what is Ubuntu or Ubuntu and how does that play into this wider discussion that we're having?
Dr. Christian Ntizimira: [00:48:01] Yeah. Um, on that sense of reconciliation. Yeah. Uh, when I mentioned, because I came here in the US, I went in UK, I went to Australia, different places, different fellowship. And it was always the same, you know, patient rights, patient autonomy. And I missed that sense because most of the patient, as I said, seeing the pictures and the patient alone sometimes was kind of difficult for me. And unfortunately, that image, I couldn't replicate it in my home because I said, we need to think differently. As I said, community responsibility does include patient autonomy, and patient autonomy does exclude community responsibility because the patient is part of the community, as the community is part of the patient. Sure. Yeah. So this is why I was thinking about which kind of philosophy we use or rooted in our context, can be used in our modern medicine and reconcile being this sense of reconciliation between the community, the patient and the providers. And that's where ubuntu came. Ubuntu means I am because you are or people are people through other people. It's also humanity toward others. I think without without you, I couldn't be part of this podcast. I'm here because of you. And this is the spirit of ubuntu. Part of the core component of ubuntu. Ubuntu value lies. Humaneness. Connectedness. Uh, reconciliation. Sense of dignity as well. Because now teaching the student that, you know, treating the disease and treating the person through the different concepts, please treat the person.
Dr. Christian Ntizimira: [00:49:56] It's better to know the person who has the disease than the disease the person has. And also ubuntu has in the sense of a context contextualization we contextualize. So as I said, I can have 100 people in the room. I don't care about the numbers, but I will get the sense of, uh, of suffering because the story matters. And also home grown solutions. Yes, in us you have a telemedicine, you have technology, we have hydrocortisone, we have everything. Of course, we don't have that. But we can contextualize, we can bring home grown solutions from what we have. And even if we have a limited resources, doesn't mean no resources. It's a limited resources. So we can use starting from the limited resources and building our capacity. And also reconciliation. Because part of that we have the decolonizing process as well. And try to reconcile ourselves that when the patient why a patient who has malaria has to feel more human than the patient who has cancer. Why a patient who has a cancer has to feel like he has a death sentence, compared to a patient who has a flu. Why medicine brought this kind of, uh, discrimination and why students has to go on that way. So we at some point we need to say stop. We need to bring back the solo format. And this is what we want to try to bring on our context. And the point is, even if it's rooted in the African context, but we want it to everybody.
Dr. Christian Ntizimira: [00:51:40] And I was in Boston, uh, one of my friend, uh, I was in Utah, and I gave a talk about ubuntu philosophy within context of palliative care. So when I went to Boston and, uh, my friend, uh, an American friend said, oh, you'll be in Boston. Yes, I have a gift for you. And I went and we met and he gave me a Celtics hat of 2008 championship. Aha. And you say, you know why I gave it to you? And you say, no, it's a dog. River was the coach that time for the Boston Celtics. And when they were on their last mile on the playoffs, I seemed like they were struggling. So doc River brought all players and he said, I'm going to teach you something. And it he taught them about ubuntu. He said, there is no superstar. We are all superstars. Everyone has to share his best skills in this game. Then we will win. We will win. Not because Paul Pierce, Kevin Garnett, Ray Allen, but we will won't because we are one and it's that spirit. They they won the championship. And they say when you talk about ubuntu I remember about the championship. So you can say yes, ubuntu. It's cool to be rooted in African context, but we want it for everyone. And I think we need ubuntu philosophy in our modern medicine. Otherwise it's no longer medicine.
Tyler Johnson: [00:53:11] I feel like just the last 15 minutes have been a great demonstration of what I was talking about before, because I agree with you that that idea of there was a phrase that you used about ten minutes ago, something to the effect of that you are because I am, or that each of us is because of each of because each of the rest of us is. I think that that is a powerful and beautiful summation of the way that this philosophy of ubuntu can inform all of us. Certainly the way that we practice here. Right, I think is I think you're right. I mean, Henry and I much of the reason for the podcast is precisely because we have sensed that hollowing out of the soul of medicine, and that really does feel like the way to begin to return what is lost.
Dr. Christian Ntizimira: [00:54:04] Thanks, Tyler. And at the end of the day, it's not about us. It's about the patient. We are what we are because of them. They need more respect and and a sense of dignity. And part of that recently last year, I published a book, I call it the Safari concept. And it came when, you know, as I told you, when you have a family meeting in Africa, you will have ten, 20, 15 and sometimes 50 people in the room. I will try to understand, you know, their behavior instead of taking the behavior as a personal issues. Try to understand those behaviors as a suffering. And I came up with a language using animal archetype to describe different type of behavior which does. Represent different types of suffering and the response. It's quite easy for me now to have and increase my sense of communication, because it's so difficult to translate some part of the tools English and French in Kinyarwanda, but have a local tool when you can understand the suffering of families. It's a sense of respect, and the power of that is just what I'm doing is looking for who is the lion and the lioness in the group? And then have a decision making with the lion lioness, because at the end of the day, the whole family will come and sense of respect and said permits, sense of redemption. Because the first story I have with a young guy who's really dying and and the whole, see, the whole family is mom, kneel before me was a sense of guilty. Now, by changing my practice, it's not them who kneel to me. It's me who kneel to them. And for me, it's a redemption.
Tyler Johnson: [00:55:55] Well, Christian, our hour is gone. We, uh. Thank you so very much again for coming all this way. And we greatly admire the work that you're doing and deeply appreciate you bringing these ideas from this very different cultural context to our show and and to the United States. And we hope that the good consequences from learning about these ideas will, will ripple out like ripples from a stone thrown in a pond. So we really we really appreciate you being here.
Dr. Christian Ntizimira: [00:56:23] Thank you. Tyler.
Henry Bair: [00:56:28] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the doctor's Art.com. If you enjoyed the episode, please subscribe, rate, and review our show available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.
Tyler Johnson: [00:56:47] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient, or anyone working in healthcare who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:57:01] I'm Henry Bair
Tyler Johnson: [00:57:02] and I'm Tyler Johnson. We hope you can join us next time. Until then, be well.