Medicina narrativa e tumori: «raccontare la malattia aiuta la diagnosi»
La «Medicina Narrativa» in Oncologia si rivolge ai pazienti, agli operatori, ai familiari e chiunque si trovi nella condizione di affrontare un percorso oncologico. Il progetto di scrittura rivolto ai malati oncologici, promosso dal reparto di Epidemiologia e Oncologia Medica A, presso l’Istituto Tumori Regina Elena di Roma.
«Responsabile Civile» ha raggiunto la dottoressa Maria Cecilia Cercato, oncologo medico ed epidemiologo, dirigente del Servizio di Epidemiologia e Registro Tumori dell’Istituto “Regina Elena” per comprendere meglio la natura di questa iniziativa.
Articolo di Laura Fedel su ResponsabileCivile
Dottoressa, iniziamo a definire la Medicina Narrativa e la nascita del progetto, può spiegarci meglio?
M.C.C. Il progetto Le storie continuano è la prosecuzione del progetto iniziato nel marzo 2015 presso l’istituto Regina Elena. Nasce perché la Medicina Narrativa, che è una metodologia clinico assistenziale comparsa di recente nel panorama medico, sta effettivamente dimostrando una sua importanza nel recuperare l’aspetto umanistico nella relazione con il paziente, un elemento che va senz’altro riconquistato e valorizzato adeguatamente, sia nel rapporto medico-paziente, ma anche in tutte le relazioni che si creano tra paziente e operatori durante il percorso terapeutico. Mi sono avvicinata a questa modalità attraverso la partecipazione a delle conferenze che ho trovato particolarmente illuminanti, soprattutto la Consensus Conference che si è svolta all’Istituto Superiore di Sanità nel giugno 2014 e che ha riunito un gruppo di esperti nazionali ed internazionali, fissando alcuni punti chiave per la definizione di quello che effettivamente è la Medicina Narrativa, la sua importanza è tale da raccomandare il suo inserimento nei percorsi di formazione del personale.
Quindi scrivere fa stare meglio?
M.C.C. Raccontare di se stessi e della propria esperienza con la malattia offre delle potenzialità incredibili per poter guardare l’uno con gli occhi dell’altro. È uno strumento che possiede un potenziale molto grande nel migliorare la relazione di cura e nel migliorare la relazione tra gli stessi operatori. Dopo aver avuto conoscenza delle esperienze di operatori che hanno applicato concretamente tale metodologia, è nata la volontà di iniziare il progetto. In Italia ci sono ancora pochi centri che utilizzano la Medicina Narrativa ma lo fanno brillantemente. Tra questi voglio menzionare il reparto di Terapia Intensiva dell’Ospedale Santa Maria Nuova di Firenze con il Prof. Armando Sarti e il Dipartimento di Riabilitazione dell’Ospedale di Foligno con Prof. Mauro Zampolini. Abbiamo iniziato il progetto con una fase conoscitiva sul livello di conoscenza degli operatori sull’argomento e sul loro interesse all’approfondimento. Sono stati realizzati dei corsi formativi presso la Biblioteca dell’Istituto, e successivamente è partito il progetto vero e proprio, a Maggio 2015 con la raccolta delle storie, invitando tutti coloro che frequentavano l’Istituto nel ruolo di pazienti, familiari, operatori e volontari a scrivere sulla propria esperienza nei confronti della malattia. Sono stati raccolti gli scritti di 32 persone: 23 donne e 9 uomini, 25 nel ruolo di paziente, 3 dai familiare e operatori, 3 medici e un infermiere). È stato realizzato un incontro il 21 dicembre 2015, nel quale questi scritti sono stati letti dagli stessi autori ed accompagnati dalle riflessioni del team di lavoro. Un incontro interattivo con un pathos molto elevato. La partecipazione numerosa all’incontro ha messo in evidenza il bisogno di recuperare la componente umanistica all’interno della Medicina.
Che cosa esce fuori dalle storie raccontate?
M.C.C. Il messaggio più forte che abbiamo colto – al di là del dolore e della sofferenza legata all’affrontare la malattia sia da parte dei pazienti che dagli operatori – è il grande bisogno di solidarietà. Il paziente soprattutto ha bisogno di sentire di essere accolto, sapere che è in un ambiente dove ci si preoccupa anche della sua sofferenza interiore. Oltre alla necessità di qualcuno che si prenda cura di lui, il paziente avverte il bisogno di condividere questa esperienza anche con gli altri pazienti. La forza nasce dalla condivisione. Vorrei sottolineare il messaggio che arriva dagli scritti dell’operatore che «rivendica il suo lato umano, con momenti di fragilità, debolezza». Confessa i propri limiti, ma dichiara il proprio grande impegno nel dedicarsi al paziente, impegno che il paziente riconosce. La sensazione forte di questo lavoro è stata quella di sentirsi parte di una comunità, ed è questo il valore che noi vorremmo evidenziare.
Quali sono i benefici “clinici” della Medicina Narrativa?
M.C.C. Nel nostro progetto è ancora troppo presto per stabilirlo, siamo ancora in una fase esplorativa. I casi da cui abbiamo preso esempio (Firenze e Foligno) hanno introdotto la narrazione nella pratica clinica. In queste realtà la narrazione è parte integrante del percorso terapeutico assistenziale, condivisa con gli operatori del team. Esistono dunque delle modalità nuove di assistenza che integrano la parte narrativa nella cartella clinica ed è proprio quello che anche noi vorremmo sperimentare nei progetti futuri. In termini di benefici abbiamo innanzitutto una maggiore attenzione all’ascolto: vedere la malattia come la vive il paziente ed ascoltare il suo vissuto consente di migliorare le capacità diagnostiche. Migliora l’aderenza ai trattamenti dei pazienti e si consolida e la relazione di cura, riducendo gli episodi di ricorso alla medicina difensiva e i contenziosi legali. Per medicina difensiva si intende l’atteggiamento da parte dei medici di ricorrere ad un eccesso di procedure diagnostiche o, al contrario, di evitare condizioni ad alto rischio per limitare la propria esposizione a un giudizio di malpractice. La narrazione a questo proposito aumenta la relazione di fiducia tra il paziente e il medico, ristabilisce il rapporto nelle giuste dimensioni e riduce il ricorso ad accertamenti eccessivi, motivate soprattutto da preoccupazioni di tipo medico legale. continua a leggere
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