Project Work from the XVII Edition of the Master in Applied Narrative Medicine by Maria Ciliberti
1. Introduction
The project is based at a HUB (Tertiary Hospital), a reference center for the treatment of patients with advanced cancer. The clinical context is characterized by high care complexity, where the boundary between active treatment and palliation is often fluid. In this scenario, Narrative Medicine (NM) is introduced as a tool to complement Evidence-Based Medicine (EBM), overcoming its limitations related to standardization and the lack of personalization in care goals.
The main theoretical references include Rita Charon’s model of narrative competence and the use of the parallel chart, Arthur Kleinman’s anthropological distinction between disease (biological illness), illness (subjective experience), and sickness (social dimension), and Arthur Frank’s narrative typologies (restitution, chaos, and quest). The approach aims to uphold the right to self-determination and to promote a concept of well-being tailored to the individual, in line with the human dignity goals of the UN 2030 Agenda.
2. Objectives
The general aim of the study is to assess the feasibility and usefulness of systematically integrating narrative medicine in an advanced oncology setting. Specifically, the project sought to:
- Evaluate the participation rate and acceptability of narrative tools among patients, caregivers, and physicians.
- Conduct a qualitative content analysis to identify key themes, prevalent emotions (using Plutchik’s Wheel of Emotions), coping mechanisms, and the use of metaphors.
- Carry out a quantitative linguistic analysis to highlight discrepancies between clinical language and experiential language.
- Explore the impact of NM on strengthening the therapeutic alliance and on the reflective practice of healthcare professionals.
3. Methods
The study involved 33 potential participants from AOU Careggi, divided into three groups of 11 subjects each: advanced-stage cancer patients, their primary caregivers, and their treating physicians. The methodology included:
- For patients and caregivers: the use of semi-structured narrative prompts to encourage the spontaneous expression of personal experiences.
- For physicians: the use of the parallel chart as a space for reflective writing.
- Data analysis: the narratives were analyzed for lexical recurrences, narrative styles (epic, tragic, etc.), and metaphors, as well as classification according to the models of Frank and Launer & Robinson (stable, regressive, or progressive narratives). Anonymity and informed consent were ensured for all participants.
4. Results
The analysis produced significant quantitative and qualitative findings:
- Participation: The participation rate was 54.5% for patients and caregivers, while it was lower for physicians (36.4%). For the latter, participation was prompted by an institutional intervention, revealing an initial reluctance toward reflective writing.
- Patients’ Experience: Emotions of sadness and fear were prominent. The diagnosis was experienced as “a world collapsing” (a recurring metaphor in 33% of cases). A prevailing need for normalcy (grocery shopping, sports) and peace of mind was observed, with restitution or stable narrative patterns. The relationship with healthcare staff was often perceived as more central than personal emotional bonds.
- Caregivers’ Experience: Narratives were richer and more articulate, dominated by the trauma of biographical rupture and the fear of loneliness. The metaphor of “calvary” stood out, along with the fear that clinical terms such as “palliative care” might extinguish hope. Caregivers experienced a form of “reflected suffering” and often sought support “in the here and now” or in “safe spaces” such as reading or watching TV series.
- Physicians’ Experience: The parallel charts revealed processes of identification (“it could have been me”) that increase emotional burden. The main concern was communicative responsibility and the risk of using inappropriate words. Strong criticism emerged regarding the lack of empathy among colleagues and organizational shortcomings during ward transitions.
5. Conclusions
The findings indicate that Narrative Medicine is more readily embraced by patients and caregivers than by physicians, who require greater training and cultural support to integrate narrative practice into clinical work. NM proves effective in preventing physician burnout and in improving the therapeutic alliance, making visible relational skills that are often overlooked.
In conclusion, the pursuit of well-being in advanced oncology does not necessarily coincide with recovery, but with achieving a state of serenity and inner peace. Integrating the narrative dimension makes it possible to ensure personalized care that respects the principle of self-determination, embracing human fragility and death not as a failure, but as a natural part of life. The project suggests that narrative can evolve into quest narratives, transforming illness into a resource for inner and spiritual discovery.