Blog

Nicoletta Suter
Responsabile SSD Formazione
Azienda Sanitaria Friuli Occidentale Pordenone
Componente Direttivo SIMeN – Società Italiana di Medicina Narrativa 

You are a “facilitator of narrative medicine workshops,” what does that mean? Would you like to introduce yourself to our readers?

For many years I have been passionately involved in basic and continuing education in social and health care on the topics of interpersonal and professional communication and caring relationships, with a special interest in the quality of these relationships, on which I believe well-being, happiness and peaceful coexistence among people depend. Encountering Narrative Medicine has expanded and enriched this experience of mine, and my own personal facilitation training has offered me a new insight and a powerful method of teaching-learning in the field of narratives and care. Being a facilitator of Narrative Medicine workshops is today not only an educational endeavor, in presence and at a distance, I am considering and experimenting with the possibility of transferring the method to other groups and contexts as well, because of its transformative and generative power.

Do you notice imbalances, misalignments in the world of health and health care? If yes, where?

In complex systems, diversities prevail over similarities: diversities in terms of ethnicities, languages, genders, cultures, social and economic systems that lead to distances and misunderstandings between points of view, beliefs and values and that are exacerbated even more where relationships between people are confronted where an individualistic and competitive paradigm prevails at the level of social organization. All this brings with it a serious burden of stress and tension, and the triggering of conflict is easier.

Places of health and educational care, in addition to being influenced by these elements, are characterized by a whole series of misalignments and divergences that precisely in the last two decades have shown themselves forcefully at various levels. First and foremost, in the relationships between caregivers, patients and their families in which difficulties and conflicts, or real walls to dialogue, may emerge due to the inability or impossibility of the parties to understand each other’s perspective and thus find ways to move toward common directions. The relationship is given by the encounter of two or more singularities that connect in intersubjectivity: care is realized well enough when the conditions of recognition and reciprocity between the parties are created, in a context where different points of view and perceptions with respect to time, space, corporeality, health, illness, life and death are always at stake.

As early as the 1980s, Mishler (1) highlighted two polarities: on the one hand, the voice of medicine, impersonal, technical, centered on the view of the body as a physical object (Körper) and on the biological aspects of illness; on the other hand, the voice of the life world, which expresses itself in 1st person singular, with metaphors, with a centering on the “illness experience” and the lived body (Leib), with a prevailing focus on biographical aspects. If the two voices fail to dialogue and integrate, divergences in care develop, many of which are described by Rita Charon in the 2nd chapter of her 2006 text translated into Italian in 2019 (2).

In short, it is as if on the one hand the healer is engaged in treating a disease and on the other hand the patient is asking to be treated as a person (3). Literature provides us with many insights in this regard, one of the most famous being Tolstoy’s short story, “The Death of Ivan Il’ič,” in which sanitarians are interested in studying and treating diseased organs, while the novel’s protagonist is grappling with the question concerning his life and death. This is what happens when medicine studies the causes and treatments of diseases from a statistical and scientific evidence point of view and then fails to move from the general to the particular, to what the sick person is experiencing and expressing in his singularity and uniqueness. That is, it is unable to accommodate and understand the narrative of suffering with all the meanings attributed to it. Consider, for example, the use of pain scales to simply acquire a numerical value or as an occasion when the practitioner opens a dialogue about that value, activating the patient’s narrative of pain. Or think of the difference between a cold, mechanical touch of the body-patient versus a different awareness of the use of bodily contact for communicative and therapeutic purposes, with all the perceptual and emotional implications associated with it. Another example is the experiences of estrangement, loneliness and social isolation that the person may experience during a hospitalization or other institution, experiences taken to the extreme during the pandemic, which we know to be the cause of increased morbidity and mortality of patients, particularly if they are elderly and if they suffer from stigmatizing diseases. A situation that due to the shortage of caregivers is even being exacerbated.

Misalignments and divergences are also present in the relationship between practitioners and institutions of care: for example, practitioners claim time to devote to the helping relationship but health care organizations marked by a model of economic efficiency dictate increasingly contracted times for health care services. And still waiting lists grow longer. This has negative repercussions on the quality of services and can be seen as a concomitant of the increase in assaults on providers by dissatisfied patients and family members. Another phenomenon of misalignment has manifested itself in pandemic time, due to the different pro- versus anti-vaccination sides against COVID. Operators suspended from work, decreased on-duty attendance, resulting in the generation of conflict within organizations and work teams that has left open wounds to this day. I believe that another form of misalignment is related to the lack of attention to the issue of the well-being and motivation of caregivers: taking care of the caregiver should be a permanent project in public health care because caregivers are the most valuable resource for protecting the health of citizens, but there is still much to be done in this direction. Working under conditions of constant overstress and risk of burn out, with the possibility of being assaulted by citizens, with a constant experience of frustration for not being able to offer quality care to patients, well all these elements cause tensions within work teams and undermine multi and interprofessional collaboration.

From my experience, misalignments also occur in the educational worlds: when, for example, in the academic training of the health professions there is a perceived distance between theory and practice, or between those who teach and those who learn, or when in classrooms or internship sites it is manifested the models offered by learning guides are not appropriate for the development of professional identity.

Continuing education in health care also has its misalignments: a major risk is related to the excessive space taken up by compulsory courses compared to the rest of the training in which a professional should participate in coherence with his or her professional profile, an aspect that has currently been accentuated in relation to new obligations arising from the NRP. Technical specialist training and training related to the development of communication, interpersonal and narrative skills, which are certainly neither optional nor second-rate, suffer. The fact that it is an obligation, although the purpose is shareable (see courses on operator and patient safety) often extinguishes the motivation to learn at the source: the risk is to make a great effort to deliver a large number of courses and credits with little impact in terms of acquiring and maintaining knowledge and skills over time.

Can storytelling be a tool for rebalancing? If so, how?

The current scenario is certainly difficult and complex, separations, ruptures and distances prevail where it would instead be desirable to bring closer, unite, integrate, precisely to promote sustainable choices in the face of the crisis of our time.
I personally think that imbalances, misalignments and divergences are constitutive of the complexity that characterizes the socio-health world, that is, they cannot be eliminated, but they can be managed in order to reduce the inequalities, inequities and conflicts that inevitably arise from them. Narrative Medicine can be supportive in this direction as it offers a method and tools that create bridges to bring divergences in the worlds of care closer together.

What do these “bridges” consist of? Picking up on Mishler, one must first work on language to align the voice of medicine with the voice of the life-world, and it is narrative that is the bridge between these two voices. This reduces the divergences between biology and biography, between rationality and emotions, between Körper and Leib, between disease and illness, between singularity and otherness, between the self and the we. Listening attentively to a narrative allows one to grasp the singularity and uniqueness of the other’s experience and also one’s own; it helps one connect in intersubjectivity, where while recognizing in the other a self different from one’s own, it is possible to arrive at mutual recognition. Charon reminds us that only when all who participate in the process of caring can give and receive, truly their potential and resources are made visible. In this way, care is generous and respectful exchange, it is the possibility of new visions and discoveries, it is an opportunity for transformation, and all of this is realized in the weaving of a new web between caregiver and care recipient: the care story.

Narrative Medina is a valuable tool to give voice to divergences and bring out those misalignments that create inequities, inequalities and conflicts. In fact, in addition to acting in the caregiver-patient relationship, it can become a flywheel to make it understood at the institutional level that, for example, care needs time, that relationship time is care time, and that a time/space to care for caregivers is mandated so that they can carry out their work alongside suffering with motivation, constancy and competence.

It is through training in Narrative Medicine that we aim to develop a specific posture and skills to generate profound changes in the behavior of individuals, work groups, and the organization as a whole. It represents a strategic lever for deep-rooted innovation that requires time and involvement of both professionals and decision-makers and also investment in human, instrumental and economic resources. This type of training refers to a transformative, constructivist, reflective and collaborative model of learning (4).

Sustainability is defined as “meeting the needs of the present generation without compromising those of the future generation.” This means that it is not something that only relates to pollution, exploitation of natural resources and other “green” issues, but is a principle that can be applied in various and different areas, not least that of health and healthcare. Is narrative medicine, in your opinion, an approach that facilitates sustainability in relationships and processes of care? If so, in what ways?

I answer yes and try to explain myself through two reflections. The first concerns the teaching-learning process of Narrative Medicine, which has its focus in a peculiar teaching methodology, the narrative-experiential workshop. Through this methodology, participants are stimulated to get involved from both professional and personal perspectives and gradually become the real protagonists of the educational experience. The group in training is a great strength representing a tool for confrontation, exchange and activator of collaborative learning.

The educational purposes of the workshop method are manifold: increasing awareness of one’s cognitive and emotional preconceptions, developing the ability to be with oneself and others, enhancing listening skills, expressive, imaginative and creative skills, and promoting emotional and social intelligence. In the workshop process, the narration of participants’ experience and the relationships established between learners and trainers are transformed into a tool for knowledge and understanding of self, others, and the world. The workshop is a gymnasium and the trainer a facilitator of learning because he or she guides reflection, fosters communication and exchange among participants, promotes discovery, and teaches how to learn and to learn constantly from experience and from each other, with open-mindedness and humility (4).

The narrative devices proposed during the workshop serve to return to experiences, to analyze them, understand them and transform them into learning, through the construction of meaning and the preparation of actions to be transferred into daily life. Reflection on experience stimulates knowledge of oneself and others and is fundamental to developing an appropriate healing posture through what is known as “mind life care” (5).

It is precisely the triad of the method (mindful reading, reflective writing/creative sharing) that activates in several moments of the workshop the three movements or processes of narrative medicine: attention, representation, and connection, engaging participants on a cognitive, emotional and bodily level with strong impact on a personal and relational level.

The effectiveness of narrative workshops (and this is the second reflection) is closely related to a particular teaching-learning methodology that is facilitation, which in the words of De Sario (6) is “…that set of skills to be acted upon with intentional attitude…with the aim of enhancing and increasing the resources at stake…to make people and groups grow, to move from particular interests (horticulture) to broader and more common interests (field)…” Given the complexity of the problems facing us, which the individual person cannot cope with alone, facilitation represents a practice aimed at developing a new paradigm within human relations: the goal is to promote collaboration, togetherness, a sense of the collective, a “bridge culture.” This is an ecological vision of relationships that does not deny the presence of divergences, differences and conflict in social living, but nevertheless aims to welcome and transform all this into opportunities for change and growth.

Within this logic and on the basis of what is described in the literature (7), since 2020 in SIMeN with Stefania Polvani and Paolo Trenta we have started the training of facilitators of Narrative Medicine workshops, a path articulated in a basic and an advanced cycle through which to develop expendable skills in the educational field and in the design of narrative medicine pathways. The experience so far has been very positive: the community of facilitators is expanding, and they are developing training programs and Narrative Medicine projects under the banner of the values of sharing and integration. Facilitation is not only a training action but a strategy to build bridges, to bring divergences closer, to decrease inequities and inequalities, to engage in network and community building. And the concept of community is particularly important; the word itself is significant precisely because of the root it shares with two other terms: communication and communion.

Do you think the parallel chart is a way to rebalance the relationship between caregiver and patient and make it more sustainable?

According to Charon, health care professionals need a tool in which they can write in ordinary, free-form language “everything that cannot find a place in a traditional medical record but that proves necessary and useful for the care of patients and their families” (2)

Usually in the medical record, writing is used to describe the patient’s situation in technical language, with contracted syntax, through abbreviations and acronyms, using the 3rd person. This is writing oriented to represent disease. In the parallel folder, the practitioner can write about the patient’s illness experience, his human affairs, his family and social network, and the context in which care takes place. As well as he can tell about his own experiences as a caregiver, reflections that emerge in the encounter with the suffering person and the impacts of all this in his own professional and personal life. The goal is on the one hand to understand more and better the patient’s agenda in order to learn how to be “on his or her side” (in the sense of advocacy) and at the same time to observe oneself with respect to one’s approach to care and one’s outlook towards the other, life, suffering, death.

That of the parallel folder is a reflective writing that is first and foremost proposed in training courses to students and practitioners both within the Narrative Medicine workshops and as a “bridge” activity between sessions. Writing is in itself a solitary act that allows the writer to deepen and reflect on the narrated events, searching for interpretations and new forms of meaning. This type of writing is very powerful because it is able to question certainties, raises curiosity and questions, creates openness of mind and widening of gaze, gives voice to self and patient (and/or other characters in the story), gives body and humanizes “clinical cases,” allows one to “see” carefully and “really” the patient, and allows the expression of emotions that do not find space in the medical record nor usually in the daily workday. The parallel folder is also a tool for taking care of oneself and one’s cognitive and emotional life (8).

In Narrative Medicine, the added value of working with the parallel folder is the reading and sharing in the group moment of the workshop of the writings, on which the triad of the method is applied as is done with any other narrative text. Sharing emphasizes the salience of the individual narrative that is enhanced by feedback from the facilitator and other participants and makes it a choral, communal act. Sharing allows for the exchange of information and reflection on the different points of view emerging from the texts. In this protected workshop space, participants feel they can confidently expose and open up even about their own vulnerabilities and imperfections, as it all takes place in a facilitative, nonjudgmental climate.

What is experienced in the workshop becomes transferable learning for participants to concrete reality, both in terms of relational posture and everyday skills and tools. Parallel writing is in fact an exercise that trains reflexivity, creativity, imagination and can be within everyone’s reach, even in care work.

Writing is a creative and representational act that passing through attention puts the observer in connection with the observed: intersubjectivity becomes a dialogue between the representations of the subjects in relationship. That is why it is so important to train on the three movements/processes of narrative medicine–attention, representation and connection–through the triad of the method–accurate reading, reflective writing, sharing–(9).

Alongside writing, it is of fundamental importance to cultivate the exercise of reading. For example, through literary imagination we have the ability to move from our center, we can have access to the lives of other human beings and understand the phenomena of life and death, health and illness in different facets and from multiple points of view. Reading and writing in general are actions that influence what and how we tell and tell ourselves. Since our existence is a constant narrative made by ourselves and others about ourselves, others, and the world, reading and writing prepare us for the responsibility of the task in personal and professional life.

To conclude…

The reflections I have shared are the basis of my commitment as a facilitator in SIMeN, now also in the NAME Training and Research Project of the Piedmont Region, which also has among its goals the reduction of conflicts and disagreements in places of care. Same commitment in the Azienda Sanitaria Friuli Occidentale in Pordenone where I currently work, as was the case previously when I worked for 25 years at the Oncology Reference Center in Aviano. As I draw to a conclusion, I would like to tell you that this year, in my own company, I am implementing a Narrative Medicine project that has a strong connection with the topic discussed here today. Together with two other facilitators and great experts in Narrative Medicine, Christian Delorenzo and Guenda Bernegger, already in the first semester we have carried out a 1st cycle of 4 workshops aimed at 30 practitioners entitled “Bonds Count”; in the second semester we will develop the 2nd cycle also in 4 sessions entitled “It can be done: generating community through Narrative Medicine” (10). I believe that the words we have chosen to name this training program are in themselves evocative of the goal we have set for ourselves. Much of the content covered in this article is part of our program that we will co-lead as a small community of facilitators to teach how to make community with and among participants.

In convergence with educational programs, I have promoted facilitation training for about ten practitioners in my company with the intention of creating a multiprofessional network of “link professionals” to spread the method and tools of Narrative Medicine. I am increasingly convinced that from the authentic connection between human beings can sprout the seeds of a gentle but steady, determined and sustainable revolution to generate a new humanism within our caring organizations, respectful of the dignity of every living being.

Bibliografia

1. EG. Mishler (1984) The Discourse of Medicine: Dialectics of Medical Interviews, Greenwood Publishing Group
2. R. Charon (2019) Medicina narrativa. Onorare le storie dei pazienti, Milano, Raffaello Cortina 
3. M. Marinelli (2016) Trattare le malattie, curare le persone. Idee per una medicina narrativa, Milano Franco Angeli
4.  P. Trenta, S. Polvani, N. Suter (2022) Formazione in Dizionario di Medicina Narrativa. Parole e pratiche,Brescia, Editrice Morcelliana
5.  L. Mortari (2013) Aver cura della vita della mente, Roma, Carocci 
6.  P. De Sario (2021) Facilitazione, Milano, Franco Angeli
7. R. Charon, S. DasGupta, N. Hermann, C. Irvine, ER. Marcus, ER. Colón, D. Spencer, M. Spiegel, (2017),The principles and practice of narrative medicine, Oxford-Oxford University Press
8. P. Trenta, N. Suter (2022) Scrittura in Dizionario di Medicina Narrativa. Parole e pratiche, Brescia, Editrice Morcelliana
9. C. Delorenzo, T. Desfemmes, M. Vignot, JM Beleyte, R. Charon, Des groupes de Médecine Narrative dans en centr hospitalier: l’expérience e le dispositif du Centre Hospitalier Intercommunal de Créteil (CHIC), Revue Médecine et Philopsophe (5) – 2021, p 47-54
10. https://formazione-asfo.sanita.fvg.it/tom_fvg_asfo/dettaglicorso.html?idCorso=38552