Medical Writing
Narrative medicine falls within the realm of medical humanities, a term used since the 1960s to denote the intersection of medicine with social and behavioural sciences (cultural anthropology, sociology, psychology, law, economics, history and history of medicine, etc.), moral philosophy (moral theology and bioethics), and expressive arts (literature, music, visual and performing arts). But what do we mean by the term “narrative medicine”?
Narrative medicine, which emerged towards the end of the 1990s at Columbia University in New York, thanks to Rachel Naomi Remen and Rita Charon, aims primarily to encourage the medical world to adopt a narrative approach in patient care. The model seeks to benefit not only patients but also doctors and, in general, caregivers, in a field where the relational and empathetic aspect is often diminished, if not entirely absent. It is a common experience, not merely anecdotal, to observe how the empathetic aspect of the doctor-patient relationship is largely alienated in favour of exclusively reducing the patient to their illness and symptoms, so to speak, to their objectivity, thereby marginalising the subjective experience of the individual.
Narrative medicine aims to complement Evidence Based Medicine (EBM), creating a new paradigm of care that is complementary to the inherently empirical and objective approach of EBM, “interjecting” the patient’s subjective experience that might otherwise be excluded in the process of “taking charge”. In this context, we refer to Narrative Based Medicine (NBM), which, alongside Evidence Based Medicine, establishes a holistic approach to patient care.
Narrative Medicine: The Practical Side of Emotions
Narrative medicine, however, is not merely a call to empathy, to good feelings, which might sound reasonable but ultimately idealistic, even hypocritical, with few real positive clinical implications.
It’s exactly the opposite: narrative medicine, through the creation of a more supportive doctor-patient relationship, aims to improve very tangible outcomes such as therapy compliance, enhancing the (emotional) lives of caregivers, and overall hospital environment, which, in light of this paradigm respectful of patients’ subjectivity (think of cases involving children), should be equipped with more welcoming and familiar environments and architectures. However, it also aims for objectives such as: organisational improvement within the care team; greater awareness of the professional role of healthcare providers and the complexity of patients’ lives; empowerment of the assisted citizen; improvement in quality of life; prevention of burnout among healthcare providers and caregivers, particularly for chronic-degenerative, infectious, and rare diseases.
In Italy, the most scientifically valuable contribution comes from the National Center for Rare Diseases at the National Institute of Health, which since 2009 has recognized the importance of narrative medicine in healthcare settings, promoting initiatives aimed at nationally monitoring services adopting this theoretical-empirical approach and fostering national and international meetings on the topic.
As obvious, the training of healthcare personnel plays a crucial role: only by equipping caregivers with cultural, emotional, and psychological tools can we foster a sensitivity within the healthcare setting that makes this approach effective. In Italy, for example, there is the Master’s in Applied Narrative Medicine at ISTUD.
The Narrative and its Mediums
The narration of illness by the patient can occur in various ways and using different mediums. In addition to verbal storytelling and writing, a highly effective medium is video. A video featuring a person discussing their illness and the challenges it presents could serve as a tool for both individual empowerment and a valuable resource for caregivers. This applies to any illness, but consider the case of rare diseases in particular.
People affected by rare diseases often find it very challenging to share their experience, and the spectre of social stigma and shame represents a significant burden on their lives. With the sponsorship of OMAR – Osservatorio Malattie Rare and ANIPI – Associazione Nazionale Italiana Malattie Ipofisarie, we conceived and produced a video in which a person with a rare disease (acromegaly) talks about their illness and their journey of awareness and acceptance. We believe it is an excellent example of how narrative medicine can be a genuine therapeutic tool to be fully integrated into the therapeutic arsenal available to medicine.
