The patient: A missing partner in the health system: Vincent Dumez at TEDxUdeM


Everyone finds it a little hard to explain in a nutshell the ‘patient-partner’ concept. To start with, you know, our health care agencies, often, too often, forget a simple thing, and yet something so essential for its efficiency but also for its humanity, that is every patient and their relatives, at one time or another in the care process, will become caregivers. At one time or another in the care process, every patient will give themselves care, be it simple, be it multiple, be it complex, they will become caregivers. Will they become competent caregivers? This is a different story, and it will be the focus of what we will discuss today, but it is a reality that millions of people today experience daily. A simple example, you end up one morning with tonsillitis, a throat infection, you have to go and see your family doctor, or you go to the emergency, outright, you will spend five, ten minutes with the doctor, the health professional, and then you will come home with your antibiotics, and for five days, you are the one who will be your own main caregiver. Oddly enough, that is a concept, it is an idea, we forget, which is often forgotten in the discussions about healthcare. So I suffer, I could not really forget that, I suffer from three chronic diseases, and first I’m a hemophiliac, Hemophilia is a hereditary disease, you have from birth, and a clotting problem. Simply put, a hemophiliac who will fall, cut himself, bump himself, well, the coagulation process is much longer, so the bleeding will last; to stop the bleeding, we need blood transfusions. So on a fairly regular basis, I am a severe hemophiliac, I use blood products very often. And then in the 80s, our blood products got contaminated by several viruses, including the AIDS virus, the hepatitis C virus, because donors who didn’t know they were infected also contaminated the blood they gave. Well these care processes, this discussion on the competent patient-caregiver, you understand it is, it has been central to my life it has been central to the lives of many, and it is now at the heart of many people’s lives. So we know that our health care system is ailing. I think every day in the papers, on the radio, it is repeated often enough, but there are some statistics I would like to get out of that, which for me, for many people, are extremely alarming statistics. First 50% of the population, in North America, and it is quite true in the West in general, suffer from a chronic illness. At least one, and with the aging population, many people suffer from one, two or even three chronic diseases. So, what does that mean? That means there are several million people today, living with a disease for 5, 10, 15, 20 years, until they die. It is not only a paradigm of acute care, we enter a paradigm, a long term relationship with the disease. Another disturbing figure, 50% of these patients, these patients don’t follow the prescription, or hardly. That’s the WHO figure dating back a few years. So you end up with , and once again, we do not need to do the maths for the volume it represents, therefore a large volume of several million people, who are struggling to treat themselves. So of course, some will say, some populists will tell you, these people are irresponsible, they exploit the resources of society, because of course, people who do not follow their prescription, they go back into the system, often sicker, they will be up in the emergency ward, they will increase the follow-up sessions at the hospital, So of course, we get all this talk: we must control them, etcetera, etcetera. What I can tell you, peronally, is that the main goal of the vast majority of people who suffer from a chronic illness, is quite simply to return to normal life, It is to regain their independence, through the disease, or even with the disease, and the only way they can achieve that, is to become competent caregivers, that is to say being able to be at home, and take charge in a very independent way. of part of the care process. So now, others will tell you, the internet is the solution. The solution to health care today is far from being the internet. Health information currently available on the internet is poorly organised, extremely chaotic, information, it’s blogs with information that is difficult to validate, or it is information disclosed by pharmaceutical companies, then we can ask ourselves various questions about that element, or else its just what our medical students’ courses so finally this is hardly usable by the average man and woman on the street. So for now the Internet is not a solution. When I arrived at the Faculty of Medicine at the University of Montreal, my colleagues, doctors told me: “Vincent, the main problem we face today, is that our patients, when they come to us, they don’t come with symptoms, but they come with diagnoses. ” Really? That’s what happens, and it happens every day! Every day doctors are facing a situation where people are coming to them with diagnoses. They have a small sore on their finger, they look on the internet they are under the impression that it is cancer, and then and then their notions must be refuted, so we have to work differently with them. The most effective way in the short and medium term, and above all the most sustainable to succeed in moving on to another model, is to ensure that our health care agencies, which are already learning environments for our students, for our future health professionals, become learning environments for patients, too. Tens of millions of people with chronic illness, it is high time for these people, to get help to get through the illness. It’s a fairly obvious possible source of efficiency and again, a major source of humanization of care. An example: this is me, you will notice I had more stomach then. I am with my mother. I was three years old then. I was just suffering from hemophilia. and l was lucky that time, because I experienced extremely innovative care agencies. Le me make it clear, in the 70s, they were laboratory care settings, that eventually were everything but mainstream. And what was developed in these settings, these Hemophilia Clinics, was really a philosophy in which the training, the education of the patients and their families was fully integrated in the care process. At the time, you can imagine, I would bleed 150 to 200 times a year, our life was, I was at home, I would bump into something, I would knock myself, my parents would try, my grandparents would try a little to get things under control, they would fail, we would end up in hospital. So care agencies eventually thought, “Well, let’s work in partnership with our patients, lets’ try to transfer some of our expertise to them, so they can be more autonomous, and it worked! It worked for a large majority of hemophiliacs who are still here, regardless of their social status, their cultural characteristics, etcetera. . Through this, and when I say family, I mean father, mother, grandparents, so this is an extended family. My grandmother also played an important role in coaching me. The hemophilia community at the time eventually proved it was possible … through good, continuous training, not just at one point, but continuously, to get patients to exercise judgment; I was able to exercise judgment, I was able to know myself through the illness. Doctors are specialists in the disease, patients are specialists in THEIR disease, that is extremely important difference. So of course I gained more autonomy, and also a sort of transfer of power, and now, if I have so few residual effects, if I have been able to develop a normal life, it is because I had, I have benefited from this system, this avant-garde care philosophy So this avant-garde care philosophy, too, had something special to it, it gave us the opportunity to do things that were not necessarily easy to do, especially, skiing is extremely risky for a hemophiliac, you can just imagine what it means. Anyway, because I had developed a form of intelligence, a capacity for judgment, it was clearly easier to trust me and say “well, ok, he’ll take a little more risk, but on the other hand, he will be able to know his own limits, and if something happens, maybe he will manage to treat himself; at that time, I was already transfusing myself intravenously. For us hemophiliacs, our ordeal really began in the 80s, with the emergence of the AIDS virus, so 90% of hemophiliacs at the time were contaminated with the AIDS virus, many are dead now, more than half, and we entered a totally different world, therefore a fatal, incurable, disease, that was a source of ostracization too, so we went from a fairly protected, laboratory setting to a new reality and above all what was special with the AIDS virus, is that it appeared in the 80, and from the mid 80s to 95, there was no effective solution to fight against the disease. So how do you develop the skills of care, on an ultimately very limitedscientific basis or almost none at all? We didn’t even understand very well what that virus was, how it worked. The doctors analyzed a few statistics. Tha’s when an absolutely amazing demonstration took place, which is extremely important for today’s issue of the patient as a competent caregiver. What did we do as infected people? We drew from the knowledge of our daily experiences, and we transferred it to one another.. So we set up a community, we looked at what was happening, we exchanged our good tricks, our bad tricks, and from there, we built knowledge, and again, people who came from totally different backgrounds, socially different people. It’s not a question of “Is someone more intelligent than another? “. We just watched what was happening, trying things, then we transferred knowledge. At some point in the mid 90’s we had gathered up more knowledge than the scientific community had. So we demonstrated at that point, both in the period of hemophilia we showed that patients, through a transfer of, let’s say ‘scientific’ knowledge, are able to develop their care skills, to become competent caregivers, but in the AIDS settings, we also demonstrated that patients could become competent just on the basis of their experiential knowledge, of what the knowledge they were gathering every day with the disease and from the moment they shared that knowledge . This is quite exceptional, and every major theory was born of that, and very mainstream practices like self-management, for example. So the problem, by the way that was me, I was 15 at the time, when I knew that I was contaminated, the problem with this issue of developing care skills, is that the more you become competent, of course, the more you develop a notability to take, to make free and informed choices of health. So of course, you take a stand, you take action, and there are times you are confronted with some choices that our health professionals would be likely to favor, so you realize that more competent patients, millions of more competent patients, if ever we finally decide to move into that era, it is also a philosophy of care that is changing. It’s a way to cooperate, collaborate, a partnership of care between patients and health professionals that changes, and finally it’s moving from a doctor-patient relationship to a relationship that might look a bit like a doctor-patient relationship, but also a little caregiver-caregiver relationship. So it’s a different way, it’s different practice, different ways of doing things. So, at the University of Montreal, right now, we’re into it. we enter that universe, we enter that sphere . The main goal is to get to do things differently, because we know that there are difficulties. I’ll just give you another example of the possible difficulties. For example, in AIDS settings, in 95 the famous protease inhibitors, the tri-therapies, appeared. Ah, finally a solution to the virus, a treatment of the AIDS virus. The problem is that those drugs had so many side effects, that we were several competent patients, it had been 15 years for those who had survived, living without treatment, and then we had managed to build a basis for a life, we were doing interesting things, we had even built, we could build careers, and then all of a sudden, we were told, “use these treatments, they’ll make your life hell, but it does not matter, at least eventually, they will treat you, you will not die, you will not die of AIDS. ” A lot of us said, “No, not right away! It’s not a final no, but for now, the time isn’t right, we do not necessarily want to change our lives permanently, because, because there is a so-called miracle happening. We’ll wait a little, we will focus on our short and medium term life projects rather than go on treatment. ” That was when we realized, once again, what the challenge was. Some health professionals, doctors, reacted very badly to that question, some said: “Fine, you don’t want to treat yourself, well we won’t follow you anymore. ” That means, you’re out of the system. And it was a real confrontation on many levels. While other health settings were far more visionary, they first thought, hey, the knowledge that they are currently building in the AIDS settings this knowledge is extremely interesting, it will allow us to us to move forward even faster on the scientific aspects. They also thought, part of the decision, that decision, well part of it belongs to the patient, they’re the ones who take a stand on that eventually, then we will help them manage the risks around it, and so they beacame model settings. So today there are several settings that have evolved that way, there aren’t any settings that did not integrate that reality of the development of the patients’ competence but let’s say there is still much to be done, and it’s going much too slowly as to the challenge that lies ahead. So what do we do now? Now we work along with health care agencies, currently there are very few hospitals that have real learning strategies for patients, and when I say very little, I remain a little bit ‘politically correct’, because in fact there are almost none. So we must help these hospitals evolve into something else, become learning organizations in a broad sense, we must work along with care agencies so they also evolve in their philosophy, in their ways, so that they do things a little differently. then those that are already doing things, and god knows there are some who are, let’s say there are things happening and then promote what they do, we must of course also act at the level of education, act at the level of our students, especially, today we launched a major transformation at … many medical schools have embarked into a significant transformation in their curriculum; the idea here is to say, our young doctors, actually must be experts in curing the disease, but with tens of millions of people who will suffer from chronic diseases, they must also be able to work with them, so in their training, all the skills must be better taken into account, the skills that will enable them to support patients, and in this issue of support, there is of course how to ensure personal development of the patient, through the disease. So there is a lot at stake, therefore influencing the agencies, transforming teaching, and changing attitudes, the attitudes of our governments too because I don’t quite understand, but the issue of patients’ education, the development of competence in patient care, it basically does not seem to be a reality or a priority, which seems a bit absurd in the current situation, I think that there is no need to be a great, a great intellectual to see that we are possibly at a dead end.. So in conclusion, I would tell you that unfortunately, and it is a very sad situation, but in the audience here perhaps at least one in two people will one day suffer from a chronic disease if it is not already the case. So take my advice, if it happens to you, I would say, demand from, or at least strongly encourage your clinical settings to teach you how to take care of yourself. Taking care of oneself, being able to take care of oneself, that is what the disease takes away from you from the outset. One day you is normal, then the next day yoy are totally dependent on a system and you have to learn almost everything again from the start. So the ability to take care of oneself is the basis of the concept of human dignity but also, it is through the development of your status as competent caregiver you will gain autonomy, you will gain freedom, and possibly with the disease, you will be able to achieve your life’s projects. So take care of yourselves and thank you.

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