The idea for this work was born as Project Work for Istud’s Master’s in Narrative Medicine and from collaboration with my mentor, Francesca Bracco.
The starting point was the daily routine of my work as a doctor in charge of a hospice and the desire to improve the environment and the stay in hospice of our patients, but not only: to pay attention to all those little details that sometimes escape us (the climate in the rooms, the language used, the smiles, etc.), but that for the patient and family members sometimes make a difference. One of the most frequently used terms in the narratives was, for example, “tranquility.”
The look or feel of the patient is the part we already investigate, but I realized that we often take for granted the point of view of the caregiver who often remains in hospice throughout the family member’s stay and faces, during those weeks, a difficult journey with moments that will stay with him forever.
Another area we wanted to investigate was the narrative/seeing of the caregiver, who in many cases has to deal with situations that emotionally do not end with working hours. I will preface this by saying that, as far as both the caregiver and the caregiver are concerned, there is the figure of the psychologist within the hospice; however, what we were looking for was the pure and direct narrative without filters of any kind.
No less important, another aspect we wished to propose was the use of three different methods of storytelling, precisely so that it would be immediately obvious which figure the storytelling referred to and so that each person would have the tool, in our opinion, most suitable.
Therefore, we chose: for the patient, the use of the IPOS, which is already being tested as a reference scale for all hospice patients; for the caregiver, a structured narrative; and finally, for the caregiver, a free narrative.
For all three types of project work participants, three key moments of the hospice stay were indicated: the first day, the seventh day and at the change of the clinical picture (improvement or worsening).
The IPOS is a validated scale and belongs to the category of Proms (Patient Reported Outcome Measures), which, through 17 questions, explores and measures the main dimensions of suffering: physical symptoms, psychological and relational aspects, existential aspects, need for information, and practical and social aspects, in order to build a PAI (Individualized Care Plan) as much as possible centered on the patient’s needs based on his or her experience and aspects of life.
The IPOS is filled out by the patient every three days in order to assess whether there is improvement and whether the tools, pharmacological and otherwise, put in place are going in the right direction or not.
The aspects that have led to the widespread use of this scale in Palliative Care are mainly three: it is a suitable tool for assessing and monitoring the patient’s problems and concerns over time; it fosters a discussion among professionals that is based on a patient-centered model; and lastly, it can be used to assess the achievement of goals, as it is a tool that can highlight significant changes in the patient’s health status.
The patient IPOS is the narrative that will serve as a reference for the other two in order to understand how at the change in the patient’s General Performance Status there was or was not a change
in the same direction by the other two figures involved: I can say that this was not always the case, sometimes, indeed, the looks diverged completely.
For the caregiver, we chose a structured narrative, so as to guide the family member and center attention on certain details that will be useful to us, tomorrow, to be able to correct and improve certain aspects of our work. For example, regarding the reception in hospice, the first impact with a place that naturally brings with it fears and preconceptions.
With the caregivers’ narrative, we achieved what we were looking for, which was maximum freedom of expression, free from judgment and stigma. This allowed them to say things they would never have told and helped us to understand that nothing can be taken for granted when you enter into the life stories of families at a very particular time full of variously declined “positive” and “negative” emotional content. This reinforced even more the importance of our neutrality and absence of judgment as we relate to them, but at the same time of the importance of our authenticity: in such a powerful moment, family members and patients immediately grasp the authentic practitioner and the one who is not.
Finally, for the operator’s narrative, we chose a free narrative divided into three moments: it seemed to us the most suitable way to understand how the patient and caregiver’s experience was received and metabolized by the referring operator. The goal was to also help the caregiver to be aware of his emotions, “positive” or “negative,” to be reworked and accepted even beyond his working time, of course always in total absence of judgment or psychological/emotional analysis: we know that every emotion, in reality, is neither good nor bad, but rather a road sign to be explored and treasured. This dwelling on one’s emotional experiences helped practitioners to review and reflect on aspects they had not detected but which emerged strongly from the stories, and to learn about a useful tool such as storytelling. For some younger nurses, moreover, writing on paper was a rediscovery of something authentic and liberating.
In these days I have been informed that I will be able to present the project at the National Congress of Palliative Care of SICP, not only as a poster, but as an oral presentation, having attracted the interest of the committee. This makes me very happy, because Narrative Medicine is proving, in my small field and in my very small experience, to be an extraordinary tool.
In recent months, among other things, I have also participated in a regional project for caregivers, where among the various activities (Pet Therapy, Music Therapy, Theater, Yoga) a module of Narrative Medicine was included, in which, in the three meetings I attended, I found the same positive aspects of the Project: freedom of expression and positive therapeutic effect on the caregiver who, in writing and rereading his or her own narrative, finds elements on which he or she had not dwelt.
I conclude by emphasizing that Narrative Medicine, in my area of work in Palliative Care, is proving to be a resourceful and enriching world to be able to best help family members and patients in one of the most peculiar and emotional moments of everyone’s life.