Would you like to introduce yourself, talk about what you do, and what kind of training have you had?
I am a Palliative Care Doctor, I work for the ADO Foundation of Ferrara, within the Ausl Palliative Care Network. I am medical director of the Hospice, with 12 beds, and doctor in charge of the Palliative Care Outpatient Clinic. I also tutor within the hospice, for the school of specialisation in palliative care, for other internal medicine specialities, and for university students at the Faculty of Medicine. My pathway began with being involved in clinical research on Autism in Child Neuropsychiatry, later I worked in Geriatric Medicine, and finally from General Medicine I came to Palliative Care.
How narrative medicine intertwines with your work
I would like to start with a premise: ‘hospice and modern palliative care are born with the intention of focusing on the needs of the person. Taking care of the patient encompasses the human being in all its facets.
A phrase that I always like to remember and that has also become a mantra for our profession is: ‘You are important because you are you’, the meaning is: I will be close to you because you are unique.
This phrase was uttered by Cicely Sanders, before the World Health Organisation gave its definition of health, i.e. not only as freedom from disease but also as adequate social life, psychological health and adequate family life. Therefore, when we take care of a person, when we arrive at (or come across) a life path that many times is towards the end, or at any rate is at an advanced stage, the patient’s narrative, for us, is fundamental, because it allows us to enter into that path. Today, keeping that narrative in mind is even more important, and this is also one of the reasons why I did my master’s degree.
We no longer only treat cancer patients, who, many times, have a history of illness that is not very long, but also patients with chronic pathologies, so knowing their clinical and personal history is fundamental because we can, in this way, enter their lives gently. Even today, doctors, in general, often rely only on their personal dialectical skills or inclinations, but these skills need to be elaborated and taught during their training so that they learn to listen to the patient and their family members.
With regard to patients in the terminal phase of life, the doctor is faced with family relationships that may have undergone modifications over the decades, changes that must therefore be considered and weighed up, when approaching listening to and, above all, communicating with the patient.
What goals have you and your hospice achieved and what goals do you still have to achieve?
Objectives we have set ourselves: to create a serene, patient-friendly and personalised care environment, focusing increasingly on the quality of the time the patient and his or her family spend in the hospice. In the project work I did for the master’s degree in applied narrative medicine, one of the definitions that came out of the stories I collected was: ‘this space represents a bubble of tranquillity for me’. We use, alongside the narratives, the IPOS, which is a validated scale (Proms), where the various aspects included in the treatment, clinical, psychological, social, are analysed from the patient’s point of view. The aim is to build a care plan that is customised and tailored to the patient. Another goal is to make the environment as familiar and as less hospitalising as possible; hence, we have equipped the environment with pet therapy, music therapy, an oncology beautician, a garden, and other pleasures of life. We want, in short, to try to ensure that the time the family member spends with the patient is as quality time as possible.
Another goal, again, is to try to make it clear to the entire healthcare staff that this job, hospice work, requires preparation. Everyone has his or her own way of interfacing with the patient’s life and his or her story, but without preparation, he or she may not be able to cope in a particularly demanding situation.
And finally, we would like to create a real network between healthcare associations, Palliative Care and others, so as to give relatives the idea that the passage of the patient, from one facility to another, remains so and that it is not perceived, by them, as an abandonment.
Would you like to tell about end-of-life cases of patients in which narrative medicine, for you, was fundamental or even useful?
Yes, I would like to tell two.
The story of a patient at the end of life, who also participated in my project work for the master’s degree. This project work was organised with the IPOS (which is administered to the patient every three days), followed by three narratives from the family members and then one narrative from each caregiver who had followed the patient. Narrative medicine in this case was helpful both for this patient and for us, the practitioners, and his family members (daughter and wife). The wife had the opportunity to tell her story freely after so much time spent restricting herself for fear of harming her sick husband and daughter, while it helped me to understand the point of view of the practitioners and on which aspects to focus the training of new young people who want to approach this field of medicine. In this case, the two operators were in fact young and therefore some of their difficulties emerged, for example, in dealing with the patient himself. He was a very particular person, very frightened, who had identified the two of them as a reference point. When he vented to them, they felt the weight of this responsibility. What amazed me was that aspects of his character emerged from this story, which I had not grasped, even though I had been following him for years.
The other story is of a patient who had had a very eventful life.
I only followed him for a month and a half but it was, however, particularly intense. The psychologist, who followed him with me, and I eventually realised that what was important to him was that someone remembered him, telling his story.
The best therapy we did for him was to listen to his story. This was the event that triggered my curiosity for narrative medicine; we can say it was a premonitory event.
Would you like to add anything else?
I would like to reiterate the importance of training in palliative care, a field that for years has been kept on the sidelines and is still seen as an easy job. But it is a job that is made up of little nuances, and narrative medicine is a worthy ally in this because it is a job that expresses, brings out and keeps all these little nuances afloat. Lastly, I would like to export the palliative care model to other areas of medicine, because it is based on the personalised care of the patient, the care of the family member, and on teamwork that is based on a horizontal model, where each worker brings his or her own contribution, and not a vertical one with the medical figure at the top.