Interview with Andreea Dumitrescu, psychologist at Inst. Marius Nasta, Bucharest
Andreea Dumitrescu is a psychologist and for ten years she works at the “Marius Nasta” Pneumophysiology Institute in Bucharest where she advises patients with resistant or extremely resistant from of tuberculosis. She goes to the department daily and talks with patients, helps them to accept their diagnosis, understand their illness, get their treatment or rebuild their dreams after the illness has broken their initial plans. Sometimes Andreea just listens them, she’s next to them and once a week she’s doing a group therapy session.
Did you choose to work with people with tuberculosis or did that happen?
It just happened. I was at a master of organizational and economic psychology. I chose this area because it seemed to me that I would find a job easier after I’ll graduate. But the incident made me work here. So I left the human resources and I started learning psycho-counseling and therapy. The work itself and the projects motivated me.
You work with patients who have tuberculosis. How are they different from other sick people?
As opposed to other somatic diseases patients (cancer, asthma, COPD), people with TB are afraid of transmitting to others, some do not know from where they got from the disease. And also it’s the stigma. When you have cancer, people are compassionate, they are beside you, but when you have tuberculosis you live with the fear that the other might run away from you. Some people are very sincere and tell their friends and colleagues what happened to them, that they have gotten sick. And many said that after they admitted they were sick, many friends left them. It is true that there are patients who deliberately choose to isolate themselves, but that also comes from the fear of feeling guilty and rejected.
“Some of them come with the conception that now, if for two or three years, you do nothing, you get heal. Like pausing your life a little bit.“
How do patients with TB see their affection? What relationship do they have with the disease?
When they get to us, they’re pretty scared. The ones who really understand what this disease is about are few. I think one of the benefits of being interned here (and not in other hospitals) is that they are normalizing in the relationship with the disease. They find, for example, that other tuberculosis patients are behaving normally. It’s bad two or three hours after taking the treatment, but they generally have activities. When they get negative, they go to Carol Park, go to the mall, hang around. They talk, gather in a salon and put music, they have a normal life. These things increase confidence. “Look, it’s not that hard, it’s not a tragedy.” Then there’s the fact that the staff here treats them better. Physicians and nurses do not run away from them. Instead of throwing them three pills and then leave, the medical staff talk to them, stand beside them until they take their medication. And it is also the fact that they see other patients coming to control, especially those who have only a few months of treatment for multidrug resistant tuberculosis that lasts two years or see patients who have completed the treatment. These patients I asked them, if they want, to come to tell a little about to others how it was for them. And when they see people who have finished treatment and who say they have resumed their activity after they have finished the injection treatment, the patients are more motivated. Especially when we also recommend them to go to work, not to retire (because they come here from other parts with this conception, that now, for two or three years, they have nothing to do, like pausing their life a little bit). On the contrary, in this place people are encouraged to go to work, but, obviously, if their work activity involves a hard work environment…
Should they change their activity field in certain situations?
It would be preferable, yes. But people working in a shop or in the office (we had patients who worked at the airport) can return to work with no problems. Likewise, they can do sports. Okay, not spinning, or other hard sports, but a relaxing one yes. And these normalize the relationship with the disease and the man understands that it is not a tragedy. But when they come they are a little frightened.
Why do you think they are and come scared? The doctor who tells them the diagnosis does not explain them what tuberculosis is?
I dont’ know how it happens elsewhere, but the fact that medical staff avoiding them and told them that they have to stay in the hospital for a very long time, that the treatment is very hard, they are not allowed to do anything, that they have to go on medical leave for a year and then, if things go well, they should retire… When you are 30 years old and you hear that you have to retire you get sick. Students, for example, are told to freeze the year. And there are times when the year it has to be frozen, but in general it is not the case, especially if a patient was diagnosed in the spring. Over the summer the patient became noncontagious and he can return to start the normal year. Maybe he does not go to college for a month, but if he became noncontagious and feels good, he can go to classes.
“Patients help a lot between them”
How do they react to diagnosis?
There are two stages. In the first one they are told that they have sensitive tuberculosis and are about to sit for a month in hospital, then they do six months of treatment and four more months take medication three times a week. Somehow it’s hard, but still acceptable. Pe urmă, după două-trei luni, când află că, de fapt, e tuberculoză rezistentă la tratament, e mai dificil, pentru că se obişnuiesc cu ideea că stau o lună în spital, apoi o lună acasă şi apoi ar trebui să se poată duce la serviciu şi să ia doar de trei ori pe săptămână tratament. Then, two or three months later when they find out that treatment-resistant tuberculosis is actually more difficult, because they are accustomed to the idea that they spend a month in the hospital, then a month at home, and then they should be able go to work and just take the treatment three times a week. They expect things to be good, but then they are told they are actually drug-resistant and they have to be hospitalized another three months elsewhere and the treatment is no longer six months, but two years.
What is the atmosphere here, at Marius Nasta, where are patients with resistant tuberculosis?
The atmosphere is generally positive. Patients are very helpful with each other. Me, the doctor and the social worker are on the ward for a few hours, but they, the patients, are there all the time and are encouraged. Newcomers (new MDR cases) are the most optimistic. Those who have relapsed or who do not respond well to treatment or who have been treated for years and the treatment did not go as they hoped are pessimistic. These ones can’t encourage others by telling them “stay calm, maybe you’ll be better,”, but they are telling that “you take the treatment and you will not do well”.
“Children are one of the strongest motivations to continue treatment.”
What motivates them to follow their treatment?
Each patient has his plans future plans. Motivation is personal. Mothers, for example, are very motivated by children, fighting for them. It is one of the strongest motivations. But there are also more cases. For example, men without employment, social assistants, alcoholics, because for them it’s harder, you have to help with them. But most patients have plans, they want things. There are some who say that “not necessarily for me, but for the family”, especially the elderly. “I’m 70 years old, but I’m thinking about the kids, I do not want to give them the disease.” Young people want to have a family, raise their children. Most patients who are hospitalized here at the Nasta Institute complete their treatment. I do not have a statistic, but these are my observations.
Also, I think it’s important that the medical staff to present the disease in a realistic form, because there may be a tendency to dramatize and then the patient feels small in the face of a big problem and gives up or, on the contrary, minimizes the risks (see Phase 3/7, Sensitive Tuberculosis) and then the patient thinks that if he feels well, it is no longer worthwhile to bear the side effects of medication.
What means 3/7?
Three days out of the seven of the week. Two pills are administered in outpatient, Monday, Wednesdays and Fridays. It is the last phase of treatment for sensitive tuberculosis, last four months.
Why do some patients abandon their treatment? Why are they unmotivated?
On the one hand, there are patients for whom the drugs have severe adverse effects (vomiting) and they no longer support the treatment. They should be helped not to discontinue treatment for this reason. The doctor may determine the causes of vomiting and find solutions, but there are patients who do not understand that. Then, there are patients who still do not understand the importance of continuing post-negative treatment for up to two years. “Why should I get treatment if I’m negative? The microbe has died, I’m negative, I don’t take any medications anymore.” They do not understand that they get re-positive themselves and when this happens, they have to take it over and over. There are also patients with sensitive tuberculosis who feel better after the first months of treatment and they don’t understand the purpose of the last phase (3/7) so they abandon and tuberculosis recur.
I think that diagnosis and illness should be presented in a realistic manner with the emphasis on the fact that for healing whole treatment must be followed, even if to patients it seems no longer the case. Being informed and finding that the risk of relapse is almost zero if the treatment is completed (at least in the case of susceptible tuberculosis), the patients would not abandon it anymore.
I spoke to a patient who told me that he is dosing his medication within one to two hours so the body could bear it more easily. That’s the solution he found. When we talked, he had four more months of treatment until he’ll complete it, in December. He told me that after the treatment is finished he wants to become a peer-supporter for TB patients.
Yes, they have to take all his medicines in a certain amount of time. These things are discussed with the doctor, who either dosages them at certain time intervals or explains some principles of treatment administration.
“The ways to deal with disease and treatment are also related to the patient’s inner structure.”
I noticed that people from all social and professional categories (students, field workers, journalists, lawyers, people from all walks of life) are hospitalized. Are they react differently to the disease?
Adherence to treatment is not related to socio-economic or professional status, but the way of reacting is certainty different, because it depends on the ability of each one to understand. An intrusive person who analyzes things will find it more difficult to cope with treatment. An anxious person develops all sorts of somatization but, ultimately, he deal with it. There are people who focus only on treatment. “For me, nothing else is important now, I have to do my treatment and that’s it.”. There are other people who, on the contrary, do not have a problem and they are saying, “It’s just a bit of my life” and they do all sorts of things to take care of their time and not think about the disease. There are all sorts of mechanisms, ways to cope with treatment and disease. They also include education, but also the inner structure.
The illness causes patients to give up to some plans also about their friends and work. How do they accept the changes, since they have to do it and not to choose it?
Some are not forced, but they conclude that there was a need for a change. For example, people who have worked hard (nine, ten, sixteen hours a day, including Saturdays) come to the conclusion that “these things happened to me because … and I exaggerated the work” and now they are reviewing their attitude about professional and personal life. Now they’re re-establishing own values. But there are situations, especially those working in the agriculture or those working in construction, where they feel somehow disabled. It is difficult to accept that you will not be able to do everything you did before or that you will not be able to do the same things and you have to change the attitude and perspective about own life.
“It would be good if the whole family of the patient were counseled about illness and treatment.”
What role does the family have in the tuberculosis patient’s life?
The family has a very important role. It has to help the patient in every way possible. For example, we now have a patient with MDR recurrence. He finished the treatment and, in less than a year, he was positive. He said he took the treatment, after which he admitted that there were days when he did not take the medicines. I’m not able to judge her family. He told me he was the only financial supporter of the house. His wife does not work, although the child is at high school. He says that his wife does not work because she has not found a job, and when I asked him when her wife looked last time for a job, he said “a few years ago”. As a cab driver maybe he had days when he was sick from drugs and could not drive. So there were days when he didn’t take the pills.
The family is very important and it must support the patient instead of putting pressure on him. Family members have to compensate, find a solution, reduce expenses or find another source of income. And this is happening very often, because there are many who work with the minimum wage in the workbook and if they get sick, they are on sick leave with the minimum wage.
So not only the patient but the whole family should be informed about tuberculosis (disease, treatment).
Yes. I think the whole family should be counseled to understand that the patient needs both emotional and household support. It is very important for the family to understand that it is a difficult time for the patient (for a few hours after taking his medicines the patient feels bad), to understand its role, to understand which would be the best way to approach the sick person (because there are families that invalidate the patient, do not let him do anything). The family needs to know what to do to really help the patient.
How does the state support the TB patients and what kind of rights they offer to them?
If patients are socially assisted, they are relieved of the working hours, they have 100% paid sick leave, 365 days of sick leave, but if the employer does not approve…
What kind of extra support would the patients need?
Psychological counseling is very important. It would also need financial support, which would be good if it could be individualized. Some patients have the minimum wage on the workbook, and when they get into sick leave, they only have what they have on their workbook. Some have very high credits, others have no income. Support can also be in the form of food or free transport. Parents can be helped to enroll their children in kindergarten if they did not get in, or they might be helped to stop paying for school food tax and so on.
You’re here with them when they became noncontagious. They come from all over the country with a TB-MDR diagnosis and they became noncontagious while they are hospitalized here. What is their reaction??
They enormous enjoy the moment, especially those who became noncontagious much harder. They say that the two or three days before giving sputum (n.b. – the saliva test) and two or three days after, until the result comes, are like the days before an exam. They have expectations, they calculate how much they will have to take the treatment when they go home, how the treatment will works. A negative sputum means a lot and for each one it has a personal significance. Not everyone succeed after the first month, so they are disappointed, because they still have to wait. In the same situation are those who become noncontagious harder, in months. They need to be encouraged and is difficult to encourage them with statistical data, because you have no way to know it will works for them.
With what kind of patients is the most difficult to work with as a psychologist?
I my opinion, the most difficult is to work with patients who come with extremely resistant tuberculosis (XDR). It is very hard, especially if they don’t become noncontagious.
“Sometimes patients who met each other in the hospital bind friendships for life.“
I have noticed that there are friendships in the hospital which, in some cases, take a long time.
This is indeed the characteristic of those with tuberculosis, compared to patients with other diseases. Bind friends, stay together, help, encourage, share food, money, everything they have. There are some poorer ones, some richer, but they encourage themselves and tell their life to each other. True friendships are bound in the hospital and the patients keep in touch with each other by phone calls also after they leave the hospital. They know how to support each other, because after all, somehow your family understands you, and otherwise you understand a person who goes through exactly what you’re going through. They also help each other with pills. For example, if a sick patient does not have pills for different reasons, calls someone who has and that person helps him with pills. Yes, they really help a lot each other, no just complain about their condition.
Those who are hospitalized for about three months, what makes them happy?
Things that make us happy too. Good food, a little fun, when they listen music and dance. They watch movies on laptop, goes out into town or park. The regular things. And, of course, those related to illness and admission: when they are visited by someone from home, when someone sends them something.