We have a piece today from André Comiran Tonon, Research Assistant at the Laboratório de Cronobiologia e Sono Hospital de Clínicas de Porto Alegre (HCPA)/ Universidade Federal do Rio Grande do Sul (UFRGS).
Knowledge does not talk to you. It assumes high privilege in an obsessive, unavoidable relationship. Knowledge prefers monologue, not because of aesthetic preference, but (simply and terribly) because that is the only voice it can assume. Knowledge is a blindfold that forces you to walk in a narrow tunnel.
In the end of my second year of Medical School at the Federal University of Rio Grande do Sul, Brazil, I interviewed a middle-aged man named Paulo with a recent diagnosis of cirrhosis due to chronic Hepatitis C. All the biomedical solutions arranged for the patient seemed to be of high quality and his disease was stable. The team that assisted him considered his case a success. However, during the long first interview I had with him I discovered a particular issue: for five years, he had refused to have his grandchildren in his arms and avoided sleeping with his wife. These behaviours would be acceptable – and even necessary – if the viral infection in question was Hepatitis A in its acute phase, but unnecessary for a chronic and controlled Hepatitis C virus (HCV) infection. What happened in the past five years, then?
The epidemiological scenario of viral hepatitis in Brazil has passed through an important transition in the past three decades. Due to the nonexistent blood screening policy before 1992, an significant number of patients who had blood transfusions have been accidentally infected with the HCV. These people, like Paulo, are developing symptomatic chronic forms of hepatitis C nowadays. Contaminated blood is one of the causes of HCV transmission, but fecal-oral (the route of the Hepatitis A virus) is not. Therefore, the risks of transmitting Hepatitis C by direct contact are minimal and there is no indication for restrictions in patients’ social relations. Ever.
Paulo was a man who lived on the countryside, far away from the big medical centre in which he was treated. He had occasional encounters with his doctors. These moments allowed him to acquire all the information he could about his disease – if the doctors told him, of course. So far, what he knew about Hepatitis was learned from a small epidemic caused by the virus A in his town. Since his recent diagnosis of both Hepatitis C and cirrrhosis, he would make all the effort to prevent the spread of his disease to anyone close to him. Therefore, he did what he knew.
Distress caused by the complications of Hepatitis C is a difficult issue by itself. It is even worse if cirrhosis is developed. Since some of the signs of a bad prognosis in cirrhosis usually cannot be assessed directly, it is important to maintain periodical examinations. Paulo was in a mild state of weakness, and sometimes expressed episodes of confusion. These were the only symptoms of cirrhosis that he expressed and his routine laboratory tests were all within normal limits. According to medical literature, this represents a life expectancy of 15 to 20 years (Harrison’s Principles of Internal Medicine, 18th edition. 2011). Life expectancy, unfortunately does not tell anything about quality of life, which is a very difficult variable to analyse. Still, it is easy to imagine that Paulo was experiencing a lower quality of life with unnecessary social problems caused by the misinterpretation of his type of Hepatitis.
This misunderstanding led Paulo to suffer from what Arthur Kleinman would call illness problems (Kleinmann, 1988), but in the context of an ill state that was not his own. Paulo almost left his house, divorced from his wife and lost contact with his grandchildren. Health care providers managed Paulo’s physical disease very well. Nevertheless, for five years, nobody has told the grandfather and husband Paulo the truth about living with his illness. This scenario is a perfect picture of the biomedical system hegemony and its emphatic concerns about technical quests – the supremacy of medical knowledge! Through their constricted knowledge – constituted as a CT machine and blood reactions – the doctors forgot a very important part of the chronically ill patient.
Paulo did not express sorrow, though. He learned how to live with this new “irreversible” social prognosis and accepted it. However, as soon as I told him the truth about his condition, he started to cry and pictured himself as a “fool”. He blamed himself for the distress and the problems caused to his family, and not the medical system that failed in the attempt of taking care of his real illness problems. The doctor is always the figure of respect in the relationship, as the assumed holder of the sufficient and necessary tools to deal with their patients’ issues. However, in the past five years the latest medical knowledge focused on technologies to track the disease progression. This did not help Paulo to have the life he wanted. For maybe 20 years more, he could have lost the things that were more precious to him.
Before knowing, one is always free to seek for knowledge. Nevertheless, this search can be very anxiogenic, as we have an urge for descriptions, labels, and closure. Sometimes we are happier to have wrong answers than not having answers at all. Knowledge, then, is an anxiety pill. If we think we know something, we find no need to panic about questioning it anymore. Suddenly, every doubt and criticism we have – and that made you free to think about different possibilities – becomes a link of the chain that imprisons us. Paulo was a prisoner of his knowledge. Doctors’ knowledge could not set him free, for they were kept prisoners by their own.