Narrative medicine is becoming increasingly relevant among researchers and clinicians.
Several projects and associations are offering new perspectives on this interesting clinical practice.
Since the publication of Arthur Kleinman's “The Illness Narratives” in 1988, considered by many to be the birth of narrative medicine, the idea that patients’ stories are a resource for more effective and more precise medicine has gained popularity and interest among researchers. This is due to Rita Charon, professor of clinical medicine at New York’s Columbia University and founder of the Program of Narrative Medicine, the first theorisation of the concept of narrative medicine, defined as “a clinical practice strengthened by narrative competence which is the capacity to recognise, absorb, metabolize, interpret, and be moved by stories of illness." (Charon, 2007).
Therefore, when we talk about narrative medicine, we are referring to a method of clinical care action based on combining the different points of view of those who are part of the care process, through narration and its various forms of expression (like dialogues, metaphors, biographies, autobiographies, accounts and poems, etc.). The basic assumption is that the experiences, subjective views and emotional overtones revealed by the stories do not have an anecdotal value, but a heuristic one. They allow us to explore otherwise inaccessible dimensions, episodes and aspects (of the disease and the person). This is why they are valuable clinical-assistance tools to support decision-making, diagnosis and treatment.
A possible alliance
How do evidence-based medicine (EBM) and narrative-based medicine (NBM) coexist and can they complement each other in clinical practice? According to the definition offered by David L. Sackett in 200, evidence-based medicine consists of “integrating the best available evidence of clinical effectiveness with the experience and skills of the physician and the values of the patient'.”
Sackett's definition also tells us that evidence cannot be imposed from above and applied to each patient in the same way: medicine is the science of detail. Both the doctor's experience and skills and the patient's values come into play. A doctor must be able to recognise the patient's specific condition, any comorbidities, their needs and abilities, but also their concerns, fears, expectations and preferences. In short, all those 'negotiating factors' that stand between the proven efficacy of a certain therapy in a sample or population and how effective it is in clinical practice, where one is always dealing with an individual.
“Without clinical expertise,” says Sackett in a 1996 paper in the British Medical Journal, “practice risks becoming tyrannised by evidence, for even excellent external evidence may be inapplicable to or inappropriate for an individual patient. Without current best evidence, practice risks becoming rapidly out of date, to the detriment of patients….neither alone is enough.”
Therefore, the two approaches are not alternative ways of practising medicine: evidence of effectiveness responds to the need to solve therapeutic problems, while narrative answers the need to understand.
Narrative medicine in clinical practice: new perspectives
Digital innovation can dialogue between a doctor and a patient easier: new tools help co-create shared, safe, personalised relational spaces that can be accessed anywhere, by anyone.
Digital Narrative Medicine (DNM), an Italian non-profit start-up founded with this aim, has created the DNMLAB, a digital platform designed for patient-led narratives during the care pathway. In early 2022, two pilot studies were published on the feasibility and usefulness of digital narrative diaries in oncology, one for patients with breast or colorectal cancer and another for patients with sarcoma. The studies, carried out by the IFO – the Regina Elena Tumour Institute - in partnership with DNM, note that the platform is evaluated positively by both patients and caregivers, and that the diary improves communication and relationships between them as well as in the care team.
However, new skills are needed. The Italian Society of Narrative Medicine (SIMeN), founded in 2009 to promote narrative medicine as a clinical-assistance method in health care settings, has launched a training course for 'Narrative Medicine Laboratory Facilitators', aimed at creating a structured system of competencies and skills to design, create, run and evaluate of experiential laboratories.
An idea by SIMeN also gave rise to the European Narrative Medicine Society (EUNAMES), which aims to promote and reinforce dialogue and discussion on the present and future of all forms of narrative medicine among health professionals, researchers (both academic and non-academic) and humanists.
Many international educational programmes have also been developed, at Columbia University as well as the Lewis Katz School of Medicine in Philadelphia, the Ohio State University Humanities Institute, the University of Southern California, the University of Arizona's College of Medicine in Phoenix, and Lenoir-Rhyne University, offering training and courses on NBM skills for medical students, researchers and health professionals. Portugal also has a Medical Humanities Project.
One area that deserves further investigation concerns the impact of narratives on mental health. One interesting and innovative project is the Erasmus + My life in Europe project, launched in 2021 by a 4-nation partnership (involving Italy, Poland, Portugal and Romania), centred on the therapeutic, social and cultural value of autobiography and on the beneficial effects of video games and online activities, focussing on the cognitive functioning of elderly or disabled people. At the heart of the project is a serious game, which can also be played online, with 10 decks of illustrated 'stimulus cards', arranged according to a precise timeline, from childhood to adulthood. Each card belongs to a category (time, space, bodies, figures or faces, actions or facts, emotions, sensory perceptions or objects) and stimulates one to write episodes from one's own life in a guided construction of an autobiography, which can then be shared with others.
These are emerging methodologies, still undergoing major developments, with extremely promising outcomes in conjunction with the care pathway.
Implementing narrative tools in clinical practice will depend above all on how ready the healthcare sector is to embrace the opportunities offered by the medical humanities, a hope that is still far from sure in a healthcare and education system that is still strongly oriented towards a biomedical framework.
By Catterina Seia and Rossella Failla
Rossella Failla, Social and health communication professional. She is attending the first edition of the Culture and Health Master's course organised by the CCW in partnership with DoRS – the Centre for Health Promotion Documentation and COREP – the Centre for Continuing Education of the University of Turin.
