We present an interview with Francesco Patti, Associate Professor of Neurology at the University of Catania and coordinator of the National Multiple Sclerosis Study Group of the Italian Society of Neurology (SIN). He has been working in the Multiple Sclerosis field for over twenty-five years, currently following more than three thousand patients at the Multiple Sclerosis Centre of the University Hospital of Catania. He collaborated with the Health Area of ISTUD Foundation within the SMART – Multiple Sclerosis: listening to the multi-professional realities of neurological teams project, sponsored by SIN and conducted in partnership with Biogen Italy, and which involved thirty treatment centres.
Q. What has Narrative Medicine meant for you, within the SMART project?
FP. Narrative Medicine was a pleasant and exciting surprise. When I was asked to think about it, I was at a conference at Bocconi University, during a speech on health economics: the new – and important – aspect was the application of Narrative Medicine to healthcare professionals world.
This surprised me: I had already started addressing the patient’s quality of life, but here the theme was dealing with the quality of life of those taking care of people with multiple sclerosis. Therefore, attention was paid to the other “front”, that of professionals listening to and taking care of the patient (neurologists, nurses, physiotherapists, psychologists, etc.): this gave me a great curiosity about the issue. For those dealing with science in a broader sense, interest is primarily addressed to disease, causes, frequencies, pathogenetic mechanisms, risk factors, the evolution of the disease, specific therapies, and secondarily to the effects of symptoms, to eventual implications and related symptomatic treatments. Little attention is paid to the illness experience, and therefore to the empathic listening to the patient and to what it entails living with a chronic and disabling illness. Narrative Medicine moves on relational, emotional, and social aspects. I joined the project with great interest, also in the choice of the centres operated together with ISTUD. We reasoned about evaluating large centres (like the one where I work), compared to smaller or intermediate centres, but also about interviewing professionals who could be more “worn out”, after twenty-five or thirty years of relationship with patients, compared to others who have approached the multiple sclerosis world a few years ago: this aspect makes a lot of difference.
This field was unexplored for me, and it involved a robust introspective examination: we, professionals, are accustomed to objective parameters, to “hard science”, while here you have to reason on what image of yourself you give in your relationship with the patient; you enter not only in the other’s mind, but also in yours, and it is a game whose result cannot be determined a priori, but which requires high attention, a constant listening and analysis ability to be inside the relationship, still in the game.
Q. What emerges about professionals from a generational point of view?
FP. The youngest professional (under forty) who has approached the multiple sclerosis world a few years ago, is enthusiastic and curious: he/she has not yet had the time to metabolize the problems of patients, or acquired the experience to manage and interact with the person with a progressive evolution of the disease. Disease progression means the progression of disability, loss of work, reduction of social activity, challenging aspects of the estate and the professional conduct of each professional. Furthermore, this professional could also be not definitively assigned to the structure, and therefore precarious. Precariousness can undermine at the base the taking in charge of the patient, guiding the adoption of relational strategies between doctor / other professional-patient very different from those acquired and used by who feel and treat illness as a part of their life.
In taking care of the patients, you take care of their problems and their sufferings: whoever comes and asks also for the pain in the teeth or has a fever, who comes without an appointment, who arrives late, who calls on the personal telephone , or invades your email inbox or writes to you on social networks or on WhatsApp also invades my time, my living space, and can sometimes cause reactions not always well understood, because not accepted and experienced by the patient as a waste, a non-availability, even if you are still available, for over twenty years; their requests are similar to those of the boyfriend holding you back for the last kiss – requests for attention and love that the doctor cannot refuse. Younger colleagues, though more enthusiastic and curious, are not overwhelmed by taking charge; they remain a little more distant, sometimes they talk about it with anxiety: they see it, but they do not yet feel it fully.
Q. The burn-out issue emerged from the project as a transversal element for professionals. What are your reflections about it?
FP. The collected interviews indicate we are in a borderline zone: professionals do not appear happy, even if there are differences between those who have a shorter career and those who have a longer one. Wear emerges over time. Resources put in place by the National Health Service are surely insufficient: in our structure, for example, we are three doctors dealing with about three thousand patients with multiple sclerosis. The activity in the neurological wards must be considered, with guards, shifts, other neurological patients, other critical issues that inevitably affect listening and relational skills. We are lucky to have two dedicated nurses, but they are not enough. We end up displeasing patients – even if this, however, implies having activated the process of taking charge.
Suffering on our part emerges, precisely because we are not enough. I could also talk about the spaces that are not enough to accommodate fifty or sixty patients a day who, accompanied by at least one or two family members, determine an enormous emotional pressure, not always easy to contain due to the variability inherent in the doctor-patient interviews inhabited by more people and not just from the primary dyad. In taking charge, this is another element that takes away a bit of serenity and a smile. And yet patients seek a smile in us. The number of patients, the spaces, the organization are weak points, criticalities that come down like a boulder on the clinician exposed for many years to these activities. Nurses also have an enormous amount of work: and, despite their burn-out level is lower, they are anyway exposed to the requests of patients and doctors.