Medical Humanities and Narrative medicine must be understood not only as a cultural proposal, a fresh perspective through which to improve clinical practice, learn about and teach the study of medical care, but also instruments of professional emancipation for the whole realm of medicine, including perinatal medicine. The term emancipation, from the Latin emancipatio, now means to obtain freedom by side-stepping hierarchies and dominant behaviour. Why emancipate perinatal medicine? Perinatal medicine consists of scientific knowledge, clinical data, technologies, logic, reasoning, troubleshooting, and decision-making, etc., but it involves relations not only with a body but also with a psyche, not only biological systems, but also emotions and feelings. Perinatology must free itself from the subordination of the biological paradigm, that is, from considering the patient as merely the addition of uterus, placenta, circulatory, respiratory symptoms, ventilations setting, a sort of brain–lung–heart preparation – and not a human being with all the desires and emotions, hopes and fears of humanity, such as a woman and a newborn in an extremely significant moment in their lives. Moreover, as with all medical sciences, perinatology must also ask the following question: has the art of “bedside medicine” been lost? These aspects of the person are more valuable than ever, as their reassessment is necessary in order to overcome the crisis, increasingly more evident in the physician–patient relationship that has now become almost totally devoid of “humanity”. The acts of understanding, interpreting, and entering into empathy with the patient are essential steps in the healthcare process. The dominant reductionist approaches of current medicine fail to capture the unique inner nature of each and every human being, and their personal history of suffering. Today’s physician tends to be a reader of charts and test results, without really “looking at the patient” or grasping his/her individuality, but instead following diagnostic-therapeutic paths according to pre-established methods. However, information and knowledge are two very different concepts: knowledge implies the understanding of the phenomena taken into consideration, and one can still be informed about a patient's illness without really knowing it. Medical Humanities and Narrative Medicine are tools for teaching how to know the experience of an illness in its complexity and therefore in its inescapable holistically individual dimension, making it possible to reach the emotional dimension of the human being, understanding not only one's own but also others' emotions. Medical Humanities enable the understanding of the sick person through “human sciences” which encompass disciplines such as pedagogy, anthropology, philosophy, sociology, history, literature, poetry and the visual arts. The epistemological bases are of the historical-narrative type, and make up a systematic form of humanistic study aimed at counterbalancing medicine which due to its enormous scientific and technological development, has lost contact with man. The sensitivity of great writers, their masterful descriptions of the moods of patients and physicians, just like the emotional impact of pictorial works, comedy and cinema masterpieces, which are presented, explained and discussed, are all instruments that can help us understand what is important, beautiful, dramatic, personal, deep and unique in a diagnosis or a prognosis. Disease exposes the woman and her newborn to a condition of fragility, an existential, psychological and social crisis that requires a surplus of assistance, or rather, a different type of assistance in both qualitative and quantitative terms. With this professional manner, the healthcare operator must be an actor, the real protagonist of the healthcare, attributing an indispensable value to empathy which is expressed in a manner no longer limited to the thinking typical of the theoretical-methodological device for interpreting contemporary perinatal medicine. The term Narrative Medicine entered to form part of the medical scene above all thanks to Rita Charon who, by declaring that illness and healing are partially narrative acts, emphasised the need to recover a conceptual picture of a narrative type in medical practice. Together with their scientific skills, physicians also need to know how to listen to the patient’s narration and understand and assimilate its meaning, and then take action on the basis of these assumptions in carrying out their clinical practice. In short: “patients must not be relegated to the corner of narration”, “To listen to a story of illness is not a therapeutic act but it means to give dignity to that voice and honour it.” This is the motto of her famous book. But does Narrative Medicine hold the answer to the current crisis in the physician–patient relationship? Does storytelling really work? What evidence, if any, supports the positive impact of Narrative Medicine on patient care, clinical practice? There is a growing body of literature, though mostly qualitative, suggesting that Narrative Medicine does affect patient care. Rita Charon's vast, 20-year scientific production in the most prestigious medical journals represents the foundation of this cultural and deontological requirement that is no reaching the entire international scientific community.
Narrative perinatal care is based on communicative and narrative practices. The narrating of pregnancy, childbirth, illness of the newborn, etc., helps give order to the flow of emotions experienced. Narration and attentive listening were initially an integral part of daily professional practice, however today they play only a marginal role. Narrative Medicine pays attention to the stories of illness as a way of understanding people and fitting them into their own specific contexts, as well as focussing on their needs as well as on new intervention strategies. Collecting and shedding light on an experience is not easy, it requires adequate time and appropriate reflection. What is the purpose of studying the narratives of illness? At the diagnostic meeting, description is the phenomenal form in which patients experience their health: it encourages empathy and promotes understanding between physician and patient, making it possible to construct indications and analytical categories useful for the therapeutic process. The application of Narrative Medicine in neonatology, and in particular, in the NICU, seems to be particularly indicated. In this case it is implicit for the story-telling to come from the parents, not the patients. Narrative Medicine can be used in the NICU for making appropriate, personalised and shared decisions together with the parents, above all if ethically sensitive. The crushing effects of disease, especially when serious, create an emotional state of anxiety and distress in the parents. This psycho-emotional fragility is amplified and interacts with the process of therapeutic alliance, and with that, of sharing critical decision-making. For the latter, the current trend herds these decisions inside guidelines or recommendations that sterilize the individuality of the newborns and their parents. Narrating and above all, re-narrating makes it possible to customise healthcare, with all decisions and practices being tailored to fit the individual patient. This method is in contrast with the current trend which stratifies and considers patients according to their gestational age and weight, and in part, also their prognostic probabilities, etc. From the initial results, we can see how Narrative Medicine could help parents to explore more effective strategies for coping and making informed choices for their infants hospitalised in the NICU. In treatment it antagonises the validation of patients depending on their pathologies, encouraging a holistic approach, and helping to make effective and personalized decisions about difficult cases in NICU. In training Narrative Medicine serves for developing students’ thinking skills, nurturing their creativity, and preparing them for the complexities of clinical work (by perfecting empathy, encouraging thought and reflection that remain stamped in the mind). In research it helps perfect an agenda centred around the patients and to generate new hypotheses, strengthening the dimension of translational research. Perinatal medicine needs to be rethought and re-implemented by restyling it to fit the patient's individuality, while availing of a synthesis process between biological dimensions and psycho-emotional dimensions, devoid of any artificial opposition, in a perspective of personalised medicine based on the “patient-centred” approach in which the individual profile of the person is assessed. This is perinatal medicine that accepts to carry out “introspection”, get involved, seek innovative ways, and rebuild the historical alliance with the patient, in a global acceptance of the skills and responsibilities, without allowing any of this to weaken its scientific components. In short, we wish to dispel a recurrent assumption: one might think that Medical Humanities and Narrative Medicine are not definite disciplines but merely “a mental attitude”. They are not that at all. In fact, we attribute to Medical Humanities and Narrative Medicine the dignity of an autonomous discipline equally as important as other professional medical skills, with the same pedagogical value as other training processes in medicine. The narrating of the experience of an illness should play a significant role in healthcare relations because suffering needs to be inserted in real stories in order to acquire a precise meaning, become shareable, and turn into a resource. We could in fact call Hippocrates' school the first school of Medical Humanities and Narrative Medicine in history that was held under the plane tree considered the oldest in Europe. “And in every place you go you it will be to provide relief for ill people. And do not stop paying attention to their problems but listen to their storytelling”, said the maestro. Hippocrates did not use the term symptoms but rather, their narrations, and “It is more important to know what sort of person has a disease than to know what sort of disease a person has”. Long before him, Gorgias, disciple of the philosopher, Empedocles 483 BC, also considered one of the greatest Sophists ever, stated in his “Analogy between words and medicines” that there is an analogy between drugs and words. Just as the former can help fight disease or be poisonous, so the latter can give relief or be evil (Gorgias, Encomium of Elena, 483 BC). So just what are Narrative Medicine and Medical Humanities if not a code of a humanistic stratagem for giving a name to a need in Medicine, namely, to revive our vocation from the various sections of memory. According to Marcel Proust “The real voyage of discovery consists not of seeking new landscapes, but of having new eyes.”
Declaration of interest
The author declares that no potential conflicts of interest exist.