The physician and the caregiver: their role in heart failure
Interview with the Novartis Group involved in the TRUST Project
It’s not infrequent that the scientific research on the living with a disease mainly focuses on the patient’s perception, on their quality of lives, and the changes occurred in their daily life because of the disease. From years, the Healthcare Area of ISTUD Foundation is a reference for a broader research approach which enlarges the investigation also to who assist patients, as caregivers and healthcare professionals. In this view, the Healthcare Area, in collaboration with Novartis Italia, realized the Narrative Medicine TRUST Project, that involved the three points of view of the pathway of care. Interestingly, it was the first time globally that the narrative approach was applied to the field of heart failure.
Here, it is reported an interesting interview with the references of the Novartis Group, Doctor Maiocchi and Doctor Latella, who actively wanted and contributed to the realization of this project.
1) Good morning everyone and welcome to the ISTUD Foundation. As the first question, we would like to ask you to briefly present yourself and your role in the Novartis Group to our readers.
Dott. Maiocchi: Good morning everyone, I am Doc. Maiocchi, I’m working in the Medical Department of Novartis Italia, and in particular, I am the Director of the Therapeutic Cardiometabolic Area.
Dott.ssa Latella: Good morning, I am Doc Maura Latella, I work for the Medical Department of the Therapeutic Cardiometabolic Area.
2) How did you know the Narrative Medicine?
Dott. Maiocchi: My employer Doc Latella had experienced Narrative Medicine in a previous project in the Respiratory field. So, I had the possibility to read works about the application of this kind of methodology, and I was curious to apply this methodology in the field of heart failure. It’s important that the collection of patients’ anamnesis in Medicine is already a collection of narratives! Lucky, we had the possibility to consult an expert KOL in the field of heart failure that immediately proposed us to apply the Narrative Medicine to this disease, and inviting us to continue with this initiative.
Dott.ssa Latella: Some years ago, I participated in an event where they also spoke about Narrative Medicine. I was fascinated by the possibility to value pathologies with a different perspective, more focused on ‘illness and sickness’ aspects, as to better understand the pathway of patients’ illness and how it impacts their lives.
3) What are the reasons why your team had decided to realize the Narrative Medicine project named TRUST, focused not only on the patients’ point of view but also to the caregivers and physicians’ perspectives?
Dott. Maiocchi: We would like to listen to the patients’ needs, but with an integration on who assist them, from the clinical point of view, the physician, but also and especially (and I think this is the main characteristic of this project) from who assist them in their daily life, the caregiver.
Dott.ssa Latella: We were moved from the possibility to have a 360 degrees perspective of all the actors involved in the pathway of care, from the diagnosis to the follow-up.
4) From the project results, a strong impact of the disease on caregivers emerged. Caregivers were more often a woman (83%) with a mean age of 55 years. In your opinion, what are the major practical implication for supporting patients and families with heart failure?
Dott. Maiocchi: In this project, a strong impact on caregivers emerged; unfortunately, caregivers are often poorly considered in the pathway of patients’ care. We would like to highlight this aspect so as to make the caregiver role emerge as a strong physician’s and patient’s ally in the assistance with the aim of improving the quality of care. Through Narrative Medicine, it is possible to create a coalition between the physician and their patient, with the best support from who assist them at home.
Dott.ssa Latella: This is the most important output of this project, that particularly surprised me and that gave me the most knowledge. I didn’t think that the impact on the caregiver could be so strong and that could influence in such impacting manner the life choices of also who assist the ill person. The practical implication could be several; first of all, a correct information about the pathology, also using a proper language and insights that can help to better understand some aspects of the living with a disease, of factors influencing the changes of families’ lives, of their ‘daily routine’ (that we poorly know at the moment). Understanding patients’ and families’ language and their living, we could create services of values to offer, along with therapies.
5) From narratives, the patient often feels a strong limitation, while physician described themselves more often as optimistic and committed to identifying the best instruments to help their assisted ones in overcoming this limiting situation. What is the Company’s position in this scenario?
Dott.ssa Latella: Surely, trying to understand how accelerating the diagnosis pathways through a correct communication, and helping in improving networks between physicians and patients.
6) From narratives, physicians wrote mainly illness narratives (96%) showing a particularly caring attitude in regards of their patients and caregivers with heart failure. How could these data be diffused and so, how could we encourage this illness-centered approach among physicians in the cardiologic field?
Dott. Maiocchi: Narrative Medicine allows to overcome the isolation condition in which patients and families had often experienced. The telling on their living and the deeper listening to them by physicians could become part of the care itself, and could significantly contribute to improving the pathway of care, which becomes in this way more ‘human’.
7) The project has also highlighted a lack of awareness of the disease. How do you think to diffuse the project to the professionals of heart failure, to overcome this phenomenon?
Dott. Maiocchi: Although heart failure is the main cause of hospitalization in Italy and has a higher risk of mortality than the majority of cancers, it is still present a poor awareness on this disease both in the medical professionals (who often address their resources to other specialization, such as the oncologic ones) and in the public opinion, surely more sensitive to oncologic topics. Differently, to other medical specialization, it’s just a few years that patients’ associations appear in the heart failure area, actively contributing to this topic. Novartis Italia promotes and supports many initiatives on the topic of disease awareness, also in collaboration with national and international scientific societies. The TRUST project will be the object of an important plan of diffusion both at Congresses and with scientific publications.
Do you want to add something else about these items?
Dott. Maiocchi: Yes, I would like to say that the patient’s narrative includes psychological, social, cultural and existential aspects, that are impossible to analyze with the simple collection of anamneses. Narrative Medicine puts in contact all the actors involved, the patient, the caregiver, and the physician, in sharing a common objective in the care, not considering only the pharmacological treatment.
Results from this project will be the starting point for not only delining the living with a disease from the patient’s perspective but it will also allow having a more detailed picture of heart failure for physicians and providers of care.
The Healthcare Area would like to acknowledge Novartis Italia for its unconditional collaboration to the realization of this project.