Del raccontar storie in medicina

Qual è il valore di verità delle narrazioni in medicina? Cosa succede quando il paziente mente? Queste e altre domande nell'ntervista a Trisha Greenhalgh e Maria Giulia Marini

Ad Arezzo, al Congresso SIMeN, ho avuto un'occasione unica: non un'intervista, ma una conversazione, con due donne - Maria Giulia Marini e Trisha Greenhalgh - che, con i loro libri e le loro parole, sono state per me maestre e figure di riferimento per la #MedicinaNarrativa. Il risultato di quel pomeriggio complice lo potete trovate di seguito e nella versione integrale su EXagere .

“Nella comunicazione umana c’è solo una verità: che tutti mentono. La sola variabile è su cosa, mentono.” Potremmo definirlo l’assioma del Dr House, il principio intorno a cui ruota gran parte di questa serie televisiva, epitome del medico impegnato a trattare la malattia, piuttosto che a curare la persona. Peccato che poi, nella maggior parte degli episodi, l’elemento che risulta determinante per risolvere il puzzle del caso non siano gli esami (che possono a loro volta “mentire”) ma l’elemento umano. Ciò che le persone dicono o proprio quello che non dicono. “La verità comincia dalle bugie!” si trova costretto ad ammettere il dottor House: per scoprire la “verità della malattia” il medico è costretto a immergersi, a entrare in relazione con le bugie, con le storie, che le persone raccontano.

“Raccontare storie” in italiano significa proprio mentire, utilizzare l’affabulazione a fini manipolatori. Ma qual il è vero significato delle storie in ambito medico?

Secondo l’approccio della Medicina Narrativa (o Narrative Based Medicine) le storie di malattia (“illness narratives”) sono indispensabili sia come fonte di conoscenza sia nella costruzione della relazione medico-paziente. Le storie che i pazienti raccontano sono portatrici di una verità idiografica, che si integra con il sapere logico-scientifico della medicina basata sulle evidenze e permette al medico una reale personalizzazione della diagnosi e della cura.

Ne abbiamo parlato con Trisha Greenhalgh - medico e docente presso la Oxford University, è tra i fondatori del movimento della Narrative Based Medicine in Inghilterra - e con Maria Gulia Marini - epidemiologa, counsellor e direttore dell’area Sanità di Istud, si occupa di formazione e ricerca nell’abito della medicina narrativa e delle Medical Humanities ed è membro del board della Società Italiana di Medicina Narrativa.

Perché è così importante dare valore alle storie dei pazienti? E qual è la difficoltà principale per i medici?

MGM Si sente sempre più spesso parlare di medicina narrativa e di narrazione in medicina, ma la verità è che quando si chiede a un medico di raccogliere la storia del paziente, il medico la confonde con l’anamnesi. Ascoltare e comprendere la storia del paziente è ancora un desiderata, una sfida, ma una sfida ineludibile: sia per il valore etico che ogni storia porta con sé, sia per garantire gli esiti di cura e l’aderenza terapeutica. Comprendere gli interessi, i valori, l’impatto che la malattia ha sulla vita del paziente è indispensabile per poter costruire una relazione di cura efficace. E per fare questo non è sufficiente la storia clinica.

TG L’antropologo americano Byron Good ha mostrato che gli studenti di medicina man mano che avanzano con il percorso di studi migliorano nella raccolta dell’anamnesi, ma peggiorano nella capacità di raccogliere la storia del paziente. Imparano a formulare domande sempre più strutturate e precise, spesso domande chiuse, finalizzate a raccogliere dati non a facilitare narrazioni. La formazione del medico insegna a non entrare in relazione con le storie delle persone.

La scienza medica generalmente si concentra sul corpo, mentre mi sembra che qui si parli di identità. Qual è il rapporto tra storie di malattia e identità biografica?

TG Il sociologo Arthur Frank ha scritto che non è il sé che racconta la storia, ma la storia che racconta il sé. ...

CONTINUA A LEGGERE SU EXAGERE RIVISTA

Trisha Greenhalgh è docente di Primary Care Health Sciences e Fellow del Green Templeton College presso l’Università di Oxford. Ha studiato scienze politiche e sociali a Cambridge e medicina a Oxford.

Guida un gruppo di ricerca che si pone al confine tra scienze sociali e medicina. Il suo lavoro cerca di promuovere e valorizzare il lato umanistico della medicina e dell’healthcare senza perdere di vista le opportunità offerte dall’evidence based medicine e dalla tecnologia.

È autore di più di 200 pubblicazioni scientifiche e di 8 libri su diversi argomenti: la valutazione dell’impatto dei servizi clinici, l’utilizzo di metodologie di ricerca narrative per illuminare le differenze culturali, l’implementazone di una pratica evidence-based, la medicina traslazionale, l’adozione e l’uso di nuove tecnologie.

Maria Gulia Marini Epidemiologa e counselor, responsabile dell'Area Sanità e Salute della Fondazione ISTUD, presso cui organizza un master in Medicina Narrativa applicata, giunto alla sua VII edizione. Ha sviluppato i primi anni della sua carriera presso aziende multinazionali in contesti internazionali, ha lavorato nella ricerca medica e successivamente si è occupata di consulenza e formazione nell’Health Care. Fa parte del Board della Società Italiana di Medicina Narrativa, è professore a contratto di Medicina Narrativa presso Hunimed di Milano e insegna Medical Humanities in diverse università nazionali e internazionali. Ha messo a punto una metodologia innovativa e scientifica per la medicina narrativa. Nel 2016 è Revisore per la World Health Organization per i metodi narrativi nella Sanità Pubblica. È autore del volume “Narrative medicine: Bridging the gap between Evidence Based care and Medical Humanities” per Springer e di pubblicazioni internazionali sulla Medicina Narrativa. È conferenziere in diversi contesti nazionali e internazionali.

“Telling stories” in medicine.

Interview with Trisha Greenhalgh and Maria Giulia Marini

"It's a basic truth of the human condition that everybody lies. The only variable is about what."This is the point, in the opinion of Dr. House, the TV character epitome of the physician who is dedicated to treat the disease, rather than curing the person. But in most of the episodes the decisive step to solving the puzzle is not the clinical tests (which can sometimes “lie”), but the human side. To unravel the “truth in the disease” Dr House is forced to immerse himself (or, generally, he forced someone else) into the patient life, to face lies - what people say or don’t say - to engage with the stories that people tell. “Raccontare storie” (=Telling stories) in Italian refers to lying, using storytelling in order to manipulate. However, this is not the only definition of this term which is intrinsically ambiguous.

What is, therefore, storytelling’s true role in medicine? According to Narrative Medicine (or Narrative Based Medicine), stories about illness (“illness narratives”) are a necessary source of information for the physician as the common ground for building the doctor-patient relationship. Oppure: Patient stories reveal idiographic truths, not the universal laws of the logical-scientific knowledge, but a kind of knowledge that enables the physician to personalize diagnosis and treatment.

We spoke with Trisha Greenhalgh – physician, researcher and professor at Oxford University, founder of the Narrative Based Medicine movement in England and with Maria Giulia Marini – Epidemiologist and Counselor at the Fondazione ISTUD MedicinaNarrativa.eu project, Milan.

Why is it important to give value to patient stories? What is the main challenge for physicians?

MGM We hear people talking about narrative medicine and stories in medicine more and more often, but the reality is, that when we ask a physician to take a patient’s story, to understand his biographical identity, they confuse it with the medical history, only focusing on the disease. Listening and understanding the patient’s story is still something we desire, a challenge, but an inescapable challenge: for the ethical value which each story carries within itself, and to guarantee treatment outcomes and therapeutic adherence. To understand patient’s preferences, values and the impact of the disease on the everyday life we need to listen to the story, not to collect medical history.

TG This challenge described by Maria Giulia has its origins in the physician’s training: the American anthropologist Byron Good demonstrated that medical students get better at taking medical histories as they go through their medical training, but they get worse at listening to patient stories. They learn to ask questions which are increasingly structured, precise, often closed questions, aimed at collecting data and not at facilitating stories. Medical schools do not teach engagement with people’s stories.

Medical science generally focuses on the body, while it seems we are talking about identity here. What is the relationship between stories about illness and biographical identity?

TG The sociologist Arthur Frank said that people think that, when a patient tells a narrative, the self tells the story, but this is not true: the story tells the self. When I had breast cancer, I wrote an autoethnography on the 80 days of chemotherapy, double the days which Jesus spent in the wilderness. I initially thought I was writing it to describe the experience of chemotherapy and I thought that the main point was that it wasn’t so terrible. But once I had written it, I realized that I was writing to rebuild the identity which the illness had destroyed. My identity was so much about being physically fit, I was an athlete, I ran every day, I had a healthy lifestyle, and suddenly… I was sick. So, I had to rewrite this narrative, and only when I finished writing the story, I realized that it was the story to take me beyond the stigma. I was ready to speak in public again. I actually presented the autoethnography at a conference in Prato.

A story of illness is, therefore, the story which emerges because of the illness. It is the trigger in a person’s life which opens the story…

MGM I’d like to mention that it is true that stories emerge because of illnesses, but it is also true that there is a meeting between two or more people (the physician, the patient, the nurse, the caregiver, but also patient blogs) in which we talk about everything, including the illness. I’d like to see Narrative Medicine leave the physician’s office because stories are broader. There is no doubt that the trigger is the illness as it represents a breaking point, but the narrative allows us to work on the transforming capacities of the individual.

So, if the story of illness is not a spontaneous one such as the kind we would have in a pub or cafe. How would you evaluate this, specifically, a doctor’s visit with respect to a normal conversation?

TG The German sociologist, Jurgen Habermas, described 2 different kinds of communication: communicative action and strategic action. You can have both kinds in a pub and both kinds in the doctor’s office. A communicative action is when everybody is telling the truth, in a direct and honest conversation. Let me try to explain this distinction with a simple example. I’m a guest at your house and you ask me, “Would you like a cup of tea?”. In this communicative context, if I’d like it, I respond, “Yes, please.”, if I don’t, I respond, “No, thank you.”. Instead, a strategic action is when, for example, I hate tea, but I answer, “Yes, please.” Because I am a guest and, presumably, I am supposed to be grateful and cordial towards you.

Strategic communications are those in which we express, not what we think, but what we believe to be socially appropriate. In what Habermas defines as Lifeworld, the day-to-day private life, with family, with children -people generally speak in communicative actions, but sometimes they try to manipulate using strategic actions. When a person goes to the doctor, the preconditions for communicative action are poor: there is a difference in power, a time constraint and, generally, the patient wants something (perhaps a prescription or an explanation, or a referral to a specialist). This is often why a patient’s story is strategic.

However, it’s not impossible to have communication that is open and honest, when the narrative sharing is genuine. It’s just that it is more difficult and unlikely. We have to ask ourselves how we can increase the chances that will be communicative actions in the clinical consultation, how can we improve the conditions which favour communicative actions rather than strategic actions. One thing that I believe can help a lot is what I call relationship-based care, building a trustworthy relationship, which lasts over time.

What happens if the patient lies?

MGM Sometimes patient lies, sometimes they don’t, like everybody. There are many studies on white lies which we tell for a good cause. Based on stories which we have collected and analysed at ISTUD, we have learned that even starting with a “lie” is worthy of attention because it is a way to start a relationship with the patient.

TG How many times, in my 35 years as a physician, have I listened to completely false stories? Not more than 5 or 6 times (apart from drug addicts who lie repeatedly to obtain drugs). Stories are perspective, they are interpretations of experience. It’s not helpful to call them lies. It is wrong to talk about untruths or truths. Each person who “lies” presents their own particular interpretation of their experience which, for them, is real.

MGM Even people with psychotic disorders have been labelled and treated as liars. In Psychiatry, there are innovative projects focused on re-evaluating hallucinations, voices, the people whom patients with psychotic disorders perceive as real. I’m talking, for example, about the project Hallucination: we should respect hallucinations because for them they are real.

TG I remember a time, when I was a resident, I took a medical history from a nun suffered from obsessive compulsive disorder: her main obsession was to have sexual intercourse with Jesus. It was so terrible for her. It wasn’t an accident that the nun’s obsession was this: the obsession matched the patient identity, in a terrible way. Her treatment could not avoid taking this into account and it was necessary to connect with her identity, engage with the fact that she was a nun, with her values, with her perspective.

They are not lies and it isn’t helpful to define them as such. The correct word is perspective. And we shouldn’t ask ourselves if the story is true or false, but what kind of story it is. Is it a tragedy? Is it a comedy? What kind of story is it?

What about what is not said? In the long term of a relationship, the physician can be a “partner in lie”, for example, if the patient doesn’t want to know.

MGM At the last conference in Arezzo, Professor Virzì, president of SIMeN, talked about this type of complicity, between two brothers who, with one look, decided not to talk about the diagnosis to their sick mother.

TS It’s what I call micro-morality: they thought it was the right thing to do. I, personally, would not agree with this choice, but for those brothers, in that situation, it was what they thought was right, the best solution.

MGM Trisha, do you think we should tell the truth at all costs?

TS No. I show my willingness to explain everything my patient wants to have explained. But, if the patient tells me they don’t want to hear the word “cancer” because they are not ready, they are telling me that that truth is too much for them. However, over time, beginning with respecting this request, we can build a trusting relationship which allows open an honest communication. But this type of request is not very common in England.

MGM In Italy, a culture of silence is more common. I remember a story about a neapolitan oncologist who was training in Canada: he talked about how he stopped patients who had just received a diagnosis outside the office to reassure them that their diagnosis was not real. He did this according to his own micro-morality, based on what he thought was the right thing to do at that time. He is trying to do something good.

So, is every story related to ethics?

MGM For me, yes. There is always a level of morality, even in what is not said.

TG I agree: absolutely yes. The point is, what kind of ethics are we talking about? Physicians are taught principle based ethic: autonomy, beneficence, non-maleficence, justice. They don’t learn narrative ethic. The problem with teaching ethics is to not over-rationalize problems. Principles don’t mean anything because they are abstract, not in contexts. How do these principles apply to the patient sitting in front of you? We can never solve this problem with abstract principles, we can only solve by engaging with the narratives. Engaging with the narratives is, in itself, an ethical act. If you hear or read a story, as Rita Charon says, you incur a moral duty towards the storyteller. It’s the topic of I-thou which Martin Buber talks about. It is because of this why politicians often do not want to be involved in narratives, they refuse the moral engagement.

MGM I think that your analysis, Trisha, is very sharp. I think that to build a good health policy we have to get our hands dirty with stories. What we do at the ISTUD Foundation is go on site, in hospitals, all over Italy, we are there in person to collect patient stories, to interview physicians and nurses, but also to listen to the stories told by the places, the spaces, the architecture…

TG In fact, many communication problems between the doctor and patient are tied to the physical environment itself, which is often lacking: there is noise, lack of privacy…often, serious diagnoses are shared in the corridor…

MGM … there is something that is similar between Italy and England: there is a lack of privacy, where conditions are created for stories. Certainly, this cannot be considered a lie.