Cardiologist Wilson de Oliveira Júnior is coordinator of the Reference Service in Chagas Disease at the University of Pernambuco and founder, in 1987, of the first association of patients in the world with the disease: the Association of Patients with Chagas Disease, Heart Failure and Cardiomyopathy of Pernambuco (APDCIM/PE), also known as Casa de Chagas.
What is the importance of the doctor’s contact with the patient with Chagas?
First of all, I would like to thank you and Joseli for the opportunity to publicize the work. This acknowledgment is not just on my behalf, it is on behalf of a multidisciplinary team and, above all, on behalf of patients for the possibility of the disease having more visibility. Because, in fact, I don’t think that the disease that is neglected, the patient who is neglected, he is the one who suffers the neglect.
The history of this clinic began in 1987, when I was responsible for the ward that admitted patients with the problem of heart failure. But sometimes I had, for example, a complete ward, with eight beds, just for patients with severe heart disease, since they are hospitalized, and these patients were discharged and a week later they returned because they had nowhere else to be cared for. There was practically no SUS yet.
So I thought let’s set up an outpatient clinic to care for those who were hospitalized, because I didn’t have enough staff to care for everyone. So, at least those who left, they went to the outpatient clinic and we continued to follow up. This had an impact on hospitalizations, decreased hospitalizations and also emergency room visits. But that was too slow, you know? It was very difficult. People said it wouldn’t work. How was I going to set up an outpatient clinic? And when I spoke at the association, it was really more impactful. They would say: “How are you going to set up an association of illiterates?”, as if that were an impediment. And history has shown otherwise, right? After all, today we have 21 associations.
The idea was for the patient to participate more, as the doctor-patient relationship is already asymmetrical. On the one hand, you have supposed knowledge and health. On the other hand, you have lack of knowledge and disease It’s one thing being on the side of the doctor, it is another completely different thing to be there on the side of the patient. The idea was to horizontalize this relationship a little more, mainly because of the subjective question. I think medicine’s biggest mistake is that it doesn’t value the subjective. As we cannot measure or see the subjective, and that is what characterizes individuality, it terrifies the doctor because steps out of the algorithm.
Little by little things were getting into shape, and the number of patients was increasing. We managed, then, a partnership with a Hemocenter, Hemope, Dr. Cristina Carrazone was president at the time. Soon, all patients who were going to donate blood and were seropositive were referred to us. This first partnership was important because most of the time the patient who goes to the blood center has no visceral injury, they feel fine. They only have an indeterminate form in which, even with positive serology, as long as they remain like that, they have the same mortality rate as we do. For example, the patient that he, Carlos Chagas, discovered the disease that was Berenice died at almost 80 years of age from another disease. But even so, patients arrive at the outpatient clinic thinking they have received a death sentence when they receive the letter saying that their blood will not be used.
So, the idea at that time was to care for these patients, including a day just for them, so that they would not find those patients who already had injuries and imagine: “they are me tomorrow”. On Wednesday we did the consultations and this consultation was much more about dispelling myths. Saying, for example, that the fact that he had the serology did not mean that he would develop the disease. Berenice’s portrait is in the outpatient clinic, we show Berenice, tiny when Chagas discovered the disease and Berenice already at an advanced age, she died in 1988, trying to show them that this death sentence can be transformed into a life sentence. It’s much more like a consultation to really see the impact of the disease on that person. For example, some think that Chagas is a “wound of the heart” (because of the meaning of the word “chagas” in Portuguese), they don’t imagine that it is a tribute to Carlos Chagas. None of this I knew, they taught me this, that is, my approach to them in a more horizontal relationship is what made me understand a lot of things that I had theoretical knowledge of, but I didn’t have the knowledge that they have. Experiential knowledge. Now, due to my presence with them for 30 years, they have a relationship with me and they vent many issues. For example, their fears about having sex once carrying the disease. They get very scared and usually the doctor doesn’t address this, and the doctor’s silence usually works as a prohibition. The labor issue too, many times they are entitled to retirement and we have to take legal action through the association. So, I tried to see if I could stop seeing things from the perspective of the disease and started to see from the perspective of the person with the disease, which would be the medicine of the person in contrast with the medicine of the disease.
In the medicine of the disease, it’s like a heart enters in the office. It’s not a heart that enters, is a person. To give you an idea, 20% of people who seek a cardiologist have a problem that is not cardiac, it is emotional. That’s a lot of people. They feels in her heart, with all the symbolism that it has, both from a religious and profane point of view. All this are things that weren’t said to me in med school. As I say to my students: I’m giving you what I didn’t have, I had to learn it from them. I think we should try to sensitize people to be interested in the disease, as you know, it is a disease with little visibility. We held a meeting to see how the teaching of the disease was in South America and Brazil in 2009. It was very shocking how several universities did not teach Chagas disease, which we consider the most Brazilian of diseases, because it is the only one where a Brazilian researcher was able to discover everything about it simultaneously.
And, above all, draw attention to the social issue, it is a disease that is generated by poverty and generates more poverty. You can’t talk about Chagas disease without talking about social issues, it’s unethical. This disease is a social disease, and Chagas already said that. I’m not saying anything new, he already had this vision. In addition to being an excellent researcher, he also managed to maintain a humanistic view, which is something that medicine needs to go back to. I think we have technical competence, but technical competence is not always combined with human competence. Medicine is actually science, art, technology and humanism. It’s not just science, as at some point I confess to you that I believed it, but it’s not. So much so that you can have an excellent researcher, but he is not necessarily a good doctor, because being a doctor goes beyond technique. You have to empathize and this empathy goes beyond bodily empathy, it is an empathy of the soul, it is listening. People say that only oratory courses exist, there is no “listening” course, when in fact we need to listen, which is different from hearing. You can hear and not listen. And when we let the patient speak, he delivers the diagnosis, in addition to reducing his fear, when we talk about the monster, the monster grows smaller.
So, in this period, what we have been doing is broadening this vision. It is a complex disease in the social, biological, psychological and spiritual spheres. How can I simply analyze it from a biological point of view? We have to see the patient transcending the biological. Not that the biological should not be seen, that’s not it, I just think that we have to transcend it, because otherwise it becomes incomplete. As I say, a body without a soul is a corpse and a soul without a body is a ghost. You can’t treat someone just treating the body, when we get sick we get sick as a whole.
What does the decentralization of clinical care consist of?
Since 2013 we have been trying to decentralize clinical care, that is, we are traveling to the interior to train primary care personnel, because 80% of patients with Chagas could be treated in primary care, they are patients who do not have serious complications. When they needed more complex care, then yes, we would attend to them in our outpatient clinic. But we still provide primary, secondary and tertiary care, and a good part of that is because patients prefer to leave the city to come here, perhaps because of the doctor-patient bond, which was another thing we achieved. The patient being treated by the same doctor makes a huge difference. He knows the doctor’s name. We celebrated the birthday of a patient who is 90 years old and she has been accompanied by Dr. Glória for 30 years. This creates one bond at a time. I myself, when it is a resident who attends, I appear so that the patient knows that I am behind it. It’s not that the resident did anything wrong, but it’s very symbolic: look, the doctor who attended to me, he continues to watch over me.
It’s how I tell my students: I’m going to tell you what’s not in the books. What I learned from experience. The stigma of the Chagas carrier, for example, the act of calling the carrier “chagasic”. Our association and the world federation of associations managed to make a document asking not to use that term, because when you say “chagasic” you are referring to the disease, and that is upsetting. It’s getting better, but it’s still very common for people to use the term. The sick person has to be taken into account, because for the doctor “chagasic” is “chagasic”, but for the person who has the disease, the meaning is different.
We started with a doctor, who was me, and a nurse In these 30 years we managed to buy a house, we have four offices, 12 doctors, we have a nutritionist, we have a psychologist, we have an occupational therapy assistant who talks to patients in the waiting room . The doctor alone can’t handle all these aspects, he has to understand that the patient with Chagas is too complex for him to think that he can solve everything by himself. He will, at most, help with the biological part, but he has to understand that that is a person and not just the body. They have a history, these are people who have an extremely painful history. Faced with a patient with Chagas disease, we have to sympathize with the suffering, biological, psychological, and spiritual suffering. When we get sick, it’s not the organ that gets sick, we get sick as a whole, and the family gets sick too, and if you don’t get the family to be your ally to form the therapeutic triad, you’ll have a much harder time with this patient. If you have family as your ally, it’s much easier.
Another thing I learned: when we diagnose a patient with Chagas, we always ask the children to come to the outpatient clinic. We didn’t have the conditions to do that, but today we do an active search to see if the mother did not transmit the disease to her child. Many children refuse, because they prefer not to know. It’s their autonomy, I can’t force them. See how those things weren’t in the books? I had to understand that they have things to teach me, and that learning is a two-way street. Today I feel like a much richer doctor in human terms and I owe them that.
A patient with Chagas is the most vulnerable part of society. 85% of them do not know how to read, or rather, they haven’t had the opportunity to be literate. It’s not that they are illiterate, they didn’t have the opportunity that I had, that you had. This inequality draws a lot of attention to patients with Chagas, to the point that the association itself often has to provide a basic food basket. See how this universe of vulnerability goes beyond the organ, this is the person’s medicine.
What are the main points of comprehensive care for the carrier patient?
The outpatient clinic is for care, teaching and research, we have several theses developed there. There is a very interesting thesis by a philosopher from USP who came to do the thesis there, which shows that we really opened up our vision. I think that researchers in the human area should participate more and more, because it is a social disease, there are several aspects of the patient that are not studied. We study the parasite a lot, we study a lot of heart damage, digestive damage, but the human carrier, within the perspective that I told you earlier, there’s not much work about. I’m talking about the heart, but what about the owner of the heart? How is their daily life? What is it like to leave the countryside at three in the morning to be seen at the out-of-home care in the afternoon? The idea was to decentralize to avoid out-of-home care, but this is proving to be very difficult. We have been training the primary care staff, but the out-of-home care turnover is very high, suddenly the doctor changes and you have to start all over again. I would even say that it is daring for us to try, but in some situations we succeed. For example, in a city 800 kilometers from here, Petrolina, we already have a person who can care for patients and these patients only come to us in those cases that need a pacemaker or defibrillator implant.
Another aspect is that I started as a cardiologist, then I broadened my view, because in cardiology we also study the heart a lot. This is all important, but it remains incomplete, it remains incomplete because I don’t know what the patient’s experience with the disease is like, as I said, the subjective part, especially now that they want to transform medicine into an exact science. I think this is a catastrophe, medicine will never be an exact science. The human being has a paradoxical truth: we are all both similar and different. That says it all, every person who sits in front of you is unique. As I tell the students, they have the same disease, but I will take a different approach due to the circumstances. After all, the man is he and his circumstance.
This is what I think we have to reclaim, because it existed. Medicine in the past, even though we didn’t have the technological advances we have today, we at least managed to overcome this side of human suffering with much more competence. We have an inflation of technical competence and a deflation of human competence and this clash of lack of human competence with great technical competence can be dangerous, because you think that technology will solve everything. Nothing against technique and technology, that’s not it. As a cardiologist, I think it was the field that technically evolved the most, but that doesn’t mean I don’t need to look at the patient. For example, we did telemedicine in the pandemic, we help several patients, but I confess that it is not the same thing, because with face-to-face I see non-verbal language. You can be saying one thing and your eyes says another. I will trust your eyes more, because non-verbal communication lies less.
Of course, we cannot leave the biological part aside, we have doctors in the morning and in the afternoon. We have four doctors who only monitor the pacemaker, we implant many pacemakers, the SUS has never lacked a pacemaker. But there is something paradoxical: while I have a pacemaker, I lack basic medicine. See what a paradox, sometimes the basics of medication are not available, many times the association buys this medication to give to the most miserable patients, because in Chagas there are no non-poor patients, there are the poorest, so it is not easy to differentiate who needs it most because actually everyone needs it.
Could this vision and this work be used in the treatment of other neglected diseases?
Of course, without a doubt. For example, the work that Morhan has been doing with leprosy is a very old work. I think it’s one of the first works with patients. Today we have several patient associations all over the world, there is even an institute that brings together all the associations in the world. We have been part of the World Federation of Associations for two years. So, it’s something that is spreading a lot. And I think it’s very positive, because the patient starts to move from a passive position to an active one. For example, when we started, the idea was that it would not work, that these patients would not be maintained in the long term, and we are seeing that this is not true. Of course, there are a series of difficulties that we have to help, but as much as possible, we give autonomy for them to grow, so as not to get that paternalistic thing. And they have grown, I think they now have a notion that they have a right, that this is not a favor.
So, I think you’re right. I think that any other disease can, in a way, change the focus of the disease, the organ, for the patient as a whole, given his circumstances. If I don’t take the circumstance into account, how am I going to prescribe medication that I know he won’t buy? This is lack of social conscience. You cannot work with Chagas disease or neglected diseases without being socially aware, and you will get very little support. For example, laboratories are not interested. This clinic is for Chagas disease and heart failure. Why did I add heart failure? Because the cardiac instance is democratic, it can happen to anyone. Chagas disease is not democratic. It’s 53 years since the last medication, 53 years. But I would say that working with Chagas disease pays a priceless spiritual wage. The recognition of these patients makes the work very pleasant, in the sense of telling how much they improve not only physically, but also how they grow as human beings.
I think it’s really great that you give back life, life in the broadest sense, not just biological life. I would say that if I had to start over I would get interested in the disease again. I received several proposals, on cholesterol, hypertension, on these topics there are already a lot of people. I think I would contribute much more, I think I contributed much more in this disease, where we have few people interested. The outpatient clinic tries to train new “chagologists”, as we call it, and it has appeared to each other that they have had constancy of purpose, which is something that working with Chagas demands. I say that the facility in Chagas is an exception. But, we managed to buy the house with a donation, the house is close to the hospital so any emergency is just across the street. Of course, the university helped us and still helps us, but moving from a room to a house is something really worth it, in the sense that we have grown, that we are managing to provide better care to patients. For example they say a lot that there they are not called by a number, they are called by name. Joana Gomes participated in a class I gave to undergraduate students and one of the things she said was: there I am called by my name and not by a number. Because when you call their name you are telling the person that they exist. These are very filigree things, but only those who know are the people who are sick. I can’t speak for them, experiential knowledge is one’s own, and I wish someone had told me that at graduation.