[The Suffering Patient: Medicine questioned. A testimony.]
Ocho libros. 2013, Reprinted 2014. 171 pages.
Note: The original version of this review was written in Spanish by Sebastián Medina Gay and published in the Chilean Journal of Public Health (Rev. Chilena de Salud Pública 2014; 18(2):227-229). It has been translated into English by Jana Stojanova.
You must be somewhat of an exhibitionist, willing to show yourself, even though disguised behind characters of fiction, to write and publish a book. This becomes particularly evident in narratives that describe the personal experience of becoming ill: here the exposure is complete. While the body is penetrated in its most intimate parts by modern diagnostic techniques, subjectivity grows and takes over. Previously a silent associate in travel, love, and full moons, it now becomes a traitor, unworthy of trust. ‘Knowing oneself to be prone to illness’ appears like a pathetic prelude to ‘knowing oneself to be mortal’. It’s the tragic destiny of human existence that imposes itself forcefully; entering through the window we thought securely shut by private and supplementary health insurance plans.
The gloomy light of imminent death fills the hospital room where Miguel Kottow lies, suffering from Guillain-Barré syndrome. The probability of full recovery becomes a bad joke, when not even his anal sphincters can be controlled. This sombre scenario is punctured with loneliness. Human contact is substituted by machines and procedures subject to bureaucracy and protocols. A sick body lies in a sick-bed, alone in spite of the constant flow of family, friends, technicians and medical personnel, low-salt menus, and plasma screens. Kottow describes the loneliness of existing in a world filled with technical objects and technicians turned objects. El Pa[de]ciente is a book about a human being who (literally) falls ill and then is trapped (literally) in diagnostic and therapeutic technology.
Yet there is an additional dimension to this book: Miguel Kottow, the patient protagonist, is a physician–a practicing ophthalmologist. He analyses his own symptoms and signs, evaluating the diagnostic performance of his colleagues; he pesters the hospital staff with superfluous questions, obsessively monitoring data from every medical exam. Worst of all, he vaguely imagines that he will write and publish a book, encouraged by a colleague and friend, who loans him a ‘tape-recorder-confessor’ in order to capture his sensations as a patient, as well as his accusations against a private system obviously conceived as a lucrative business. Kottow writes that “the set of interests, institutions and protocols interposed between patient and therapy determine the type, form, mode of administration and dosage of treatments, the frequency and magnitudes of control test, the need, or not, to locate, if only by cell phone, the ‘treating’ physician or one in charge of the case. No, not the case: the affected organ or body segment.” Thus, the ophthalmologist criticizes the technician’s eye, blinded by the dance of bills.
There is more: the patient isn’t just any physician. Miguel Kottow is a well-known Chilean academic in Public Health, and has been honoured in his home country with the title “Distinguished Scholar in Bioethics”. I can imagine him, convalescing at home, transcribing the recordings of the most difficult days in the hospital. Kottow does not profess vindication resulting from his experience of the kind “I fell but could recover with the conviction of having learned a life lesson”. Nor does he wish to present a self-help text, although the book has already proved quite popular with a wide audience. El Pa[de]ciente, he says, has no lesson— neither something to be imitated nor a take-home message. Rather, it presents a sincere and existential reflection, criticizing fads and naturalizations of discourses centred on health, disease and medicine. For example, understanding disease as a symbol or as a journey, Kottow replies:
“the sufferer wants to end his distress, not signify it, knowing that empathy and accompaniment cannot pierce the private and internal character of the experience of pain and suffering. At the same time, his initial intuition about actual medical practice (a meagre remake of the original therapeutic role of the doctor, that would hardly further patients’ improvement), becomes the object of study and reflection. Thus the notion of the ‘Therapeutic Arc’ is developed, the space where ‘patients and doctors begin by not following a common path, diverging from the fleeting, clinical encounter, interfered and manipulated by the forces of administration and protocol. Face-to-face communication is episodic, limited and replaceable by health-care personnel and technical equipment’”.
We can now imagine how the bioethicist takes no rest as he listens to his recordings, surely looking back at his life, his wanderings, his theories and convictions. Perhaps he does find some lesson to be gleaned from his experience; perhaps he sees a radiant sun shining behind the fog of illness. Convinced that his narrative is compelling, he sees reason to expose himself on paper. His conviction is, I believe, that his story is similar to hundreds of narratives of helplessness, loss of autonomy, and exploitation by a sick system. In the end, it is a belief in the power of this story which moves Kottow to relearn the use of a keyboard and apply himself to listen, transcribe, reflect, notate, quote, justify, print, correct, convince an editor and, finally, to publish. Ultimately, Kottow appears to employ this platform to reach the public as extensively as possible, with the intimate hope that the transformation of reality can only be made possible by sharing, diverging, debating and reflecting. Something as simple as it is complex: the ability to dwell (construct, incorporate and be) in our similarities and differences.
Sebastián Medina Gay is a researcher and lecturer at the School of Public Health, of the University of Chile in Santiago. He works in community health in indigenous rural areas in southern Chile. He holds an MD from the University of Chile and a Master’s in Social Medicine, Universidad Autónoma Metropolitana, Mexico.
Jana Stojanova is a clinical pharmacist with a research interest in personalized medicine. She is part of the editorial team for the Chilean Journal of Public Health, published at the School of Public Health, of the University of Chile. She holds a Bpharm from the University of Sydney, and a PhD in Pharmacogenetics from the University of Limoges, in France.
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