Tales in Cardiology

I see no reason or need for my doctor to love me—nor would I expect him to suffer with me. I wouldn’t demand a lot of my doctor’s time: I just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once, be bonded with me for a brief space, survey my soul as well as my flesh, to get at my illness, for each man is ill in his own way. Anatole Broyard, The patient examines the doctor.1 In an era of medicine marked by overwhelming technology and obsessive emphasis on Evidence-Based Medicine, the role of patients’ narratives has progressively lost the key function of driving medical decisions, as it has been doing for centuries. While technology outweighs a physical examination by providing more detailed information, it cannot replace the information resulting from the storytelling of patients, caregivers, or other doctors, nor the physician–patient human interaction, which is important, often crucial, for successful treatment. The storytelling is pivotal in many cardiovascular conditions: heart failure (just think of NYHA functional classes) myocardial infarction or angina, syncope, and thromboembolism are paradigmatic examples. In all these conditions, the essential clinical steps are: ‘To listen, to understand, to care’. For these reasons, at the Cardiology Department of the School of Medicine of ‘Sapienza’ University, Sant’Andrea Hospital in Rome, we have developed a multidimensional program to enhance the role of narrative medicine in the education of medical students, young physicians, and cardiology residents, and, more so, for the management of heart failure patients. Sant’Andrea—‘Sapienza’ University Hospital, Rome, Italy. The main role of the medical profession is to cure patients and not diseases; to take care of every patient suffering from any illness as a whole and unique person, because, following Anatole Broyard, ‘each man is ill in his own way’. Massimo Volpe with the ‘Narrative Cardiology’ team at Sant’Andrea Hospital (L to R: Roberta Coluccia, MD, PhD; Massimo Volpe, MD; Andrea Laurito, MD student, experimental thesis in Narrative Cardiology; Livia Pescarollo, MD, Anaesthesiology Resident; and Marco Testa, MD, PhD, FESC, Cardiology Staff). In a cornerstone article in the final decade of the 20th century, Bryan Hurwitz asserted: ‘In an evidence-based era […] the wide-angled view of the connectedness of human thought and imagination which the study of narrative offers, deepens our appreciation of the storied nature of clinical exchanges. It also reminds us that the consultation remains not only a wellspring of medical humanity but a pivotal point in the generation of medical knowledge’.2 Narrative medicine is not just about tales, it is a form of interpersonal medicine, an empathetic version of medicine that is pursued by embracing emotion and appreciating behaviour.3 Rita Charon has nicely defined Narrative Medicine as ‘medicine practiced with the narrative skills of recognizing, absorbing, interpreting, and being moved by the stories of illness’.4 In other words, ‘the term narrative medicine refers to a clinical assistance method based on a specific communication competency. Narrative is the fundamental tool to acquire, understand, and integrate the different points of view of those involved in an illness and in the treatment process. The goal is to develop a shared personalized treatment plan (care story). Narrative-based medicine is integrated with evidence-based medicine and, by considering the various perspectives, makes clinical assistance decisions more complete, personalized, effective, and appropriate’.5 The output of a narrative medicine intervention is a ‘care story’ that integrates clinical evidence and experience with the patient’s story. Giving back to patients not only the treatment, but also the narrative behind it, promotes a therapeutic alliance and improves self-care. Narrative medicine is not an inborn propensity to an empathetic doctor–patient relationship. It can be taught and learned. The training in narrative medicine has a positive impact not only on the single health care professional but also on the entire health care system.6 We believe that narrative medicine training can be carried out at any point in a professional life, but it should be already planned at the time of the initial training of all medical students, especially during the Medicine and Surgery course program, and reinforced in the Cardiology specialty programs. With that in mind, we started a formal elective course in narrative medicine for third-year medical students at the School of Medicine of ‘Sapienza’ University of Rome. The course is organized in a cycle of 12 2-h lessons, supported by seminars held by narrative medicine experts, and practical exercises. In the following years, students may apply to continue to practice medicine with a narrative approach, and to access clinical or research pathways with a narrative approach, both in Cardiology and in other clinical specialties. Students’ approval rating appears to be quite high. After completing the course, they keep calling themselves ‘narrative students’, and suggest that the course should become mandatory for all medical students. At the end of the course, a student summed up her impressions by saying: ‘The narrative medicine class helped us to understand that the first thing to do is TO LISTEN. We have a patient in front of us, with a story to tell, emotions and fears, anxieties and expectations, and we have to learn how to catch the human and clinical clues of the tale. There is a patient we have to take care of. Listening to the patients allows us to achieve the best interpersonal relationship and to gain their confidence, as well as to implement an optimal clinical plan’. This program is open to cardiology residents and trainees, in light of the key importance of narrative medicine in cardiology. In our clinical practice in cardiology, we began to apply narrative medicine starting with heart failure patients. Heart failure is a syndrome characterized by a long natural history, periods of clinical stability, and periods of exacerbation with a great impact on quality of life, and thus, is a perfect ground for a narrative approach. This approach has proved to be a valuable tool to improve an empathetic relationship among patients, caregivers, and physicians, and to understand the emotional experiences of each individual. Furthermore, we assume that education to self-care for heart failure patients, and their caregivers, may be best tailored using a narrative medicine approach.7 We have been using a web-based digital platform called Digital Narrative Medicine (DNM), which has very high standards of safety and allows to value the illness narratives of patients and caregivers to build a digital network aimed to personalize treatment (http://digitalnarrativemedicine.com/en/). The difficulties faced by clinicians in applying narrative medicine are often attributed to the lack of time, but the real problem is actually the lack of a setting. A digital platform can provide such a setting, since it offers a space where only the patients, their stories and their doctors exist. In the space created on the DNM platform, patients are guided to tell their stories, with the help of narrative prompts that facilitate the expression of each person’s individuality and unique life story. An example of a prompt is, ‘The journey with illness is different for each person and here I will tell you mine….’. The preliminary assessments of DNM show the increased effectiveness of a digital setting in favouring the emergence of aspects that are not strictly clinical but linked to the patients’ priorities in everyday life.8 The strongest advantages reported by health care professionals were: the disclosure of relevant data otherwise not detectable; the optimization of clinical examination (length and quality); an improved patient–doctor relationship and doctor to doctor communication. Several studies9 have assessed the perception of patients implanted with an ICD for different heart conditions at risk for sudden death, most of them in very few patients, some with a quantitative approach and some with a qualitative approach. An ICD is not always well accepted, and a subgroup of patients experience psychological distress and impaired quality of life post-ICD implantation.10,11 We are currently enrolling patients already implanted, or in the decision process before the implant. They are affected by heart failure with reduced ejection fraction or other cardiac diseases (hypertrophic cardiomyopathy, Brugada Syndrome, arrhythmogenic right ventricular dysplasia…), and we are studying them with both a narrative medicine qualitative approach, using the DNM platform, and a quantitative approach, using different questionnaires. These approaches will help us to better understand the illness trajectory, to identify the specific need of each individual and provide the best possible support. Our Cardiology group in Rome is collaborating with the Health Care Area of ISTUD Foundation (Baveno, VB, Italy, https://www.istud.it/sanita/) in the coordination of the TRUST project, an innovative study that collected narratives from heart failure patients, their caregivers and their physicians, to integrate the three major points of view on the pathway of care, in order to better understand how living with heart failure affects patients’ everyday life.12 This research is carried out according to WHO recommendations on narrative research.13 The 256 narratives collected are being analysed according to the Grounded Theory methodology, and with the support of a qualitative data analysis computer software (NVivo 10, QSR International Pty Ltd). For the very first time, a narrative medicine approach combining the three major points of view (patients’, caregivers’, and physicians’) is applied to the field of heart failure. This tool could be particularly informative, since it integrates clinical information with feelings, thoughts, and actions of the entire pathway of illness. Preliminary data from this study have been presented at the 2018 Italian Society of Cardiology Congress. Conflict of interest: none declared. References are available as supplementary material at European Heart Journal online. Cardio Pulse contact: Andros Tofield, Managing Editor. Email: docandros@bluewin.ch