Title: Once Upon a Time. . . At The Tenth SOBRAMFA International and Academic Meeting - S. Paulo - Brazil Journal Issue: Journal for Learning through the Arts, 2(1) Author: De Benedetto, Maria Auxiliadora C., SOBRAMFA - Brazilian Society of Family Medicine Blasco, Pablo G., SOBRAMFA - Brazilian Society of Family Medicine de Castro, Ariane G., SOBRAMFA - Brazilian Society of Family Medicine de Carvalho, Elsi, SOBRAMFA - Brazilian Society of Family Medicine Publication Date: 2006 Permalink: http://escholarship.org/uc/item/9p44s8qz Acknowledgements: Keywords: Narratives, Family Medicine, Medical Education, Healing Local Identifier: class_lta_2536 Abstract: In Brazil, medical practice and the predominant medical education model are based on specialization. Methodologies such as patient-centered medicine and narrative medicine are either unknown or not applied in a systematic way. In order to draw students’ and doctors’ attention to these approaches during the TENTH SOBRAMFA INTERNATIONAL AND ACADEMIC MEETING, an informal event called “Narrative Session” was presented. The meeting’s attendees were asked to send patients’ stories in advance. The stories submitted were selected and classified according to medical sociologist Arthur Frank’s description of three structures or skeletons of narrative – restitution stories, chaos stories, and quest stories. A special ambiance – a setting evoking The Tales of 1001 Nights– was created for the presentation. The narratives performed showed the narratives’ healing and didactic potential for patients, doctors, and students. Copyright Information: All rights reserved unless otherwise indicated. Contact the author or original publisher for any necessary permissions. eScholarship is not the copyright owner for deposited works. Learn more at http://www.escholarship.org/help_copyright.html#reuse eScholarship provides open access, scholarly publishing services to the University of California and delivers a dynamic research platform to scholars worldwide. DDee BBeenneeddeettttoo eett aall..:: OOnnccee UUppoonn aa TTiimmee.. .. .. AAtt TThhee TTeenntthh SSOOBBRRAAMMFFAA IInntteerrnnaattiioonnaall aanndd AAccaaddeemmii...... 1.StoriesinMedicine:searchingforhumanisticroots Medicineisaprofessionthatinvolvesrelationshipbetween atleasttwo individuals–physicianandpatient.Tellingstories isanaturaltendencydeep-rootedin thecoreofhumanbeings.Illpeoplealsoneedtotellthestoryoftheirillnessesandthe storiestheythinkarerelatedtotheirsufferings. In theolddays, resourcesfordiagnosis andtherapyweremuch morelimited,andlisteningtopatientswithempathywastheonly toolapplicableinsome medicalsituations.Eveninthemodern era,when physicianshave much greatertechnicalknowledge,patientsdon’t trustdoctorswhodonotpayattention totheirstoriesandconsidertheirfeelings.Thepatient-doctorrelationship alwayswas, andwillbe,thefoundationofagood medicalpractice.Thecoreofgood medicine remainsthesame:awarenessofapowerfulandimportantbondbetweendoctorand patient.Althoughthescienceofmedicinenowis vastlydifferentfromthat inprevious centuries,theconnection betweenphysician andpatientisstill basedonthesame principlesofhumannature.(1) Nowadays, medicineis aworlddominatedbytechnological advances,inwhich priorityis giventoincreasingreductivenessandspecialization.Physicians knowagreat dealabouteverysegmentofthehumanbodyand mind; sometimesthispreoccupation withthetechnicaldetails ofdiseasehamperstheperceptionofthewholenessrepresented bythehumanbeing.Althoughthedominantmedicalmodeloffersinnumerable advantages forpatients’ care,somethingis missing.Patientsanddoctorsaren’ttotally satisfied,perhapsbecausethefragmentationofthehumanbeingandthehighlightingof technologyhaveobscuredtheimportanceofagoodpatient-doctorrelationship.(2) 11 JournJaolu fronra Ll efoarr nLienagr nthinrogu tghhro tuhgeh A trhtes, A2r(t1s),, 2A(1rt)ic (l2e0 70 6(2)006) Mostcurrentclinical activityisdrivenbytheprinciplesofevidence-based medicine. “Usingthismodel,clinicianstrytoturnpatients’stories intoclinicalquestions andthensearchforthebestrelevant evidenceto gettherightanswer.”(3) Scientific evidencecomesfrom randomizedtrialsorcohortstudiesappliedtopopulations accordingto mathematicalmodels.Theresults obtainedthroughthesestudies concern populationsorgroupsofpatientssimilartothosestudied. Thechallengeistherealanduniquepatientdoctors haveinfrontofthem. Allthe textswrittenaboutphysiopathologyofdiabetes mellitusaresimilar,buteachindividual whoisexperiencingtheillnesshasadistinctiveandirreplaceablestory. Itis also necessaryforthephysicianstobeabletoreadand understandthistext.Goodmedical practicerequires aproperapplicationofevidence-basedmedicineconcepts tothe individualcontext.Itis uselesstoknowthebestmanagementforaparticulardisease,if thepatientdoes nottakethemedicines,becauseheorsheis depressedorhasasystemof beliefthatimpedeshisorheradherencetothetreatment. Thedevelopmentofagoodpatient-doctorrelationshipisacrucialresourcefor translatinggeneralizedscientificevidenceintotheparticularhumansituation. Thisuse ofthedoctor-patientrelationshipisacornerstoneoffamilymedicine,which routinely filterssciencethroughthelivedexperienceofthepatient.Patient-centered medicineand narrativemedicineareusualmethodologiesforthis purpose. Forimprovingtheclinical method,differentapproaches ofpatient-doctor communicationhas been developedduringthelastdecades. “Clinicalmethodisan interpretativeactwhichdrawsonnarrativeskillstointegratetheoverlappingstories told bypatients,clinicians, andtest results.”(4)In1957,thephysician,Michael Balint, 22 DDee BBeenneeddeettttoo eett aall..:: OOnnccee UUppoonn aa TTiimmee.. .. .. AAtt TThhee TTeenntthh SSOOBBRRAAMMFFAA IInntteerrnnaattiioonnaall aanndd AAccaaddeemmii...... introducedtheterm“person-centered medicine”to refertoaclinical methodthathas psychotherapeuticconnotations andis basedonphysicianself-awareness. Patient- centeredmedicinebecameoneofthemostimportantpillars ofthespecialtyof family medicine. Ian McWhinney,afoundingfatheroffamilymedicine,andhisdiscipleshave guidedfamilyphysicians aroundtheworldindevelopinga methodologycomposedofsix basiccomponents,whosefunctionistostrengthen andexpandthepatient-doctor relationship.(5)Practicingpatient-centered medicineimpliestheprimacyof listeningto thepatient. Whenpatients meetdoctorsorhealthcareprofessionals whoarewillingtolisten tothemwithempathy,theyeasilystarttellingstories–storiesoftheirlives and sufferings,andstoriesrelatedtotheirbeliefs andlifephilosophy.Thepoint nowiswhat todoandhowtodealwithpatients’stories,eventhosethatapparentlyhavenothingtodo withtheirdiseases’clinicalstories. 2.Turningstoriesinto narratives:a healing methodology Duringthelast decades, anew methodology–narrativemedicine, atermcreated byRitaCharon(6),ornarrative-based medicine,as Britishauthorsprefer– hasbeen constructedas apossibleresponsetotheabovequestion.Suchamethodologyinvolves theuseofpatients’stories as atherapeutictool. Focusingonpatientnarratives,bringing themtolight andconsideringalternativenarratives,allows patients toparticipateintheir ownhealingprocess.(7)Patients’narratives aremorethan merestoriesin whichthefacts aretoldoneafteranother inachronologicaland finitesequence. Theyalso gobeyondthe familiarclinicalstoriesphysicians constructabout theirpatients. Inpatient narratives,the feelingsbehindtheevents areoften moreimportantthantheconcreteeventsthemselves. 33 JournJaolu fronra Ll efoarr nLienagr nthinrogu tghhro tuhgeh A trhtes, A2r(t1s),, 2A(1rt)ic (l2e0 70 6(2)006) Narrativesalwaysinvolveinterpretation.(8)Thesamestorycanbetoldandlistenedtoin manydifferent ways. Moreand morehealthprofessionals agreeabout thehealingpower ofthewordand recommendthattheirpatientsexpress,throughtalkingor writingin proseorpoetry, feelings theyhavedifficultydealingwith.(9) Aspatientshavethe chancetofreelyexpress theirfeelings,anxieties,fears,beliefsandthesad eventsoftheir life’sstory,theyfrequentlyleavetheofficebetterthantheyarrived.Tofullyappreciate patientstories,weneedtohavethenarrativeskills toapprehendvarious componentsof thesechronicles,suchas structure,plot,voice,and character.As themedicalsociologist Arthur W. Frankasserts, “Thesubtlesemanticsofnarrativesuggestastructure underpinningthestory, andnarrativeanalysis locates structures thatstorytellersrelyon butarenotfullyawareof”.(10) Inordertopracticepatient-centered medicineinaproper manner,itis important tounderstandthehuman beinginalldimensions – physical,emotional,cultural,social andspiritual. Withtheintroductionofhumanities departmentsinvarious medicalschools aroundtheworld,medicalstudentsanddoctorshavebeen advisedtoimprovetheir knowledgeaboutinnerhumannaturebystudyingthehumanities–literature,philosophy andarts-andincorporatinginsightsderivedfromthesedisciplinesintotheirpractice. Studentsand youngdoctorscan,forexample,beintroducedtodifficultthemesrelatedto life,death,pain,illness andsufferingthroughliterary,philosophicalandcinematicworks. Insuchaway,theycanbepreparedtodealwiththesedifficultsubjectsbeforehavingto facethemin reallife. Butonemayalso enhancethisliteraryapprenticeshipinthedailypracticeof medicinebyconsideringrealpatients’stories and howthesestoriesintersectwithand 44 DDee BBeenneeddeettttoo eett aall..:: OOnnccee UUppoonn aa TTiimmee.. .. .. AAtt TThhee TTeenntthh SSOOBBRRAAMMFFAA IInntteerrnnaattiioonnaall aanndd AAccaaddeemmii...... relatetotheirownpersonalandprofessional stories.Suchstoriesrepresent asourceof teachingaboutthesubtletiesofhuman emotionandbehavior.Aslisteningtopatient narrativesstimulatesreflection,doctorsandstudentsbegintolearnabout aspectsoftheir patients’livesandtheirrelationshipswiththeirpatientsthat previouslywereinaccessible oronlybarelysensed.Bysharingthesenarratives withcolleaguesandpromoting reflectionanddebate,theknowledgeobtainedis expanded.Itispossiblethatone patient’snarrativewillenlightenasimilarsituationlivedbyotherpatients. So,inmany aspects,narrativesacquireanimportantdidacticroleinthepracticeandteachingof medicine. 3.StoriesinMedicalEducation:the SOBRAMFAexperience TheBrazilian SocietyofFamilyMedicine(SOBRAMFA)isan academicsociety whoseaimistopromotefamilymedicineandtoestablishtheproperbasis andscientific methodologyfor familypractice. SOBRAMFA runs aresidencyandothertraining programsforstudents anddoctors,specialists and generalists.Theprinciples ofevidence- basedmedicineareappliedtoimprovethetechnicalperformanceofits trainees.Beyond that,humanisticresources areusedtoteachthephilosophyandpracticeoftheartof medicine. Onceuponatime, attheTenthAnnual SOBRAMFA InternationalandAcademic Meeting, agroupofstudents anddoctors frommanyBrazilianstatesassembledtotell andlistentostories intheopeningsessiondedicatedtonarratives.Each year,this meetingopenswithasessionfocusingonnarrative,andthis yearwasnoexception. Thesesessions areaninformal encounterwhoseaimistodrawtheattentionofstudents anddoctorstotheimportanceofnarrativeinmedicalpractice.Accordingtothe 55 JournJaolu fronra Ll efoarr nLienagr nthinrogu tghhro tuhgeh A trhtes, A2r(t1s),, 2A(1rt)ic (l2e0 70 6(2)006) predominantBrazilian medicaleducationmodel,studentsstudya greatdealabout diseases,organs andsystems and verylittleaboutthehumanbeingstheywill havein frontofthemthroughout theircareers.Althoughtheteachingofhumanitieshas been introducedinsomeBrazilianmedicalschools,itsstudysuffers adichotomyinthatitis rarelydirectlyconnected withclinicalpractice.Andnarrativemethodologyis practically unknown. Studentsand youngdoctors longfora waytoacquiretoolsthatallowthemto dealappropriatelywithhumanbeingsintheir completeness. Webelievethenarrative sessionisastimulus tothinkaboutalltheseissues. This year,inthe“callfor narratives”,theattendeesatthemeetingwereaskedto sendinadvancepatients’storiesthathadbrought greatlearningorinsights forthemor showedapalliativeor curativeeffect forpatients.Elevenofallnarrativessubmittedwere selected,inaqualitativeway,forhavingfulfilled theconditionsrequiredinthecall.The finalpresenterswereaskedtoeitherreador recitethesestoriesfrom memory. Everyyear,aspecialambianceisprepared forthenarrativepresentations,a settinginspiredbyaliteraryorcinematicworkin whichastorytellerplayedasignificant role. In2006,asettingevokingTheTalesof1001Nights wascreated, and, onthe “stage,”aSOBRAMFA second yeartraineeincarnatedthecharacterScheherazadeto conductthesession.Afteranexplanationaboutnarrative methodologybyoneofthe eventcoordinators,SOBRAMFA’s Scheherazadeopenedtheperformancewiththe followingstory: “Onceuponatimeacruelsultanlivedinavery,verydistantrealm.Becausehe hadbeenbetrayedbyoneofhis wives,hebecameconvincedthat nowomanwas trustworthy.So,hemadeapromisetohimself–hewouldnever bebetrayed again.Inordertokeephispromise,eachtimehetookanew wife,hekilled heron theirweddingnight.Thatwas thewayhefoundtoavoidpotentialbetrayal.Then, hechoseScheherazade, aprincess ofaneighboringkingdom,as his wife. 66 DDee BBeenneeddeettttoo eett aall..:: OOnnccee UUppoonn aa TTiimmee.. .. .. AAtt TThhee TTeenntthh SSOOBBRRAAMMFFAA IInntteerrnnaattiioonnaall aanndd AAccaaddeemmii...... Scheherazadehadagift –sheknewhowtotellstories inawaythatmadepeople fascinated.Andeachnight thesultankepther alivebecausehewantedtolistento anewwonderfulstoryor toknow theendofanearlierone.Thestories told by Scheherazadeoriginated TheTalesof1001Nights.” Then,thetraineeexplainedthatthechoiceofscenariowasbasedonthefollowing idea:knowinghowtotellstoriesmadethedifferencebetweenlifeanddeath for Scheherazade.Similarly, inmedicine, aprofessionthatdeals withhuman relations, knowinghowtolistento andtellstories alsocan makethedifferencebetweendeathand life,diseaseandhealth,sadness andjoy,sufferingandtranscendence. Next,Scheherazadecalledontheparticipantsinapredeterminedsequence resultingfromaprevious categorizationoftheirstories.Thestories selectedwere classifiedaccordingto Frank’s descriptionofthreestructuresorskeletons ofnarratives – restitutionstories,chaos storiesandqueststories. Thisclassificationwaschosenbecause ithas shownagreatapplicabilitytothedailypracticeoffamilymedicine, especiallyin didacticpalliativecaresettings.Thefollowingtext,inwhich Frank’sinsightsabout narrativewaspresentedandexplicated,was intermingledbetweenthenarrative presentations.(11) Frankconsiders thepatienttobeastorytellerandthetellingand receivingofthe storyas agiftrelation,notaprofessionalexchange.Storytellingis arecursiveelaboration oftherelationshipbetweenthosesharingthestory.Thereis astorytellingrelation,in whichsomeonecanbespeaking,butstories aretoldwith–notonlyto–listeners whoare partofthestory. Stories arenot materialtobeanalyzed,butrelationshipstobeentered. Eachoneofthethreenarratives’skeletonsdescribedbyFrankmaybecomeapathway, a wayofenteringrelationships. Thestructuresdescribedbytheauthorarenotrigid,but 77 JournJaolu fronra Ll efoarr nLienagr nthinrogu tghhro tuhgeh A trhtes, A2r(t1s),, 2A(1rt)ic (l2e0 70 6(2)006) representapredominantpatterninthestory.Dependingonthe mannerin whichthestory is toldandlistenedto,onecan changefromonepatterntoanotherinitsdevelopment. Storiesallowfortheemergenceof meaninginrelationtoillnessandsuffering; andtheidentificationofthemeaningbyitselfcan exertatherapeuticeffectonthepatient. Andthisis truenotonlyforthepatients,butforphysicians andmedicalstudentsaswell. Whentheseprofessionals telltheirstories,theyarenotmerelylookingforclinicaladvice. Liketheirpatients,theytooarelookingformeaning,aclarificationoftheirrelationship withpatients; andtheyaretryingtolearnhowtosuffer withpatients. 4.Illnessanddoctoringthroughstories:restitution,chaosandquestnarratives Inthenarrativesession,restitutionstorieswerethefirstpresented.Thesestories concern apersonwho getssick,receivescarefromadoctororhealthprofessional,and, throughtreatment,his/herwellbeingisrestored.Duringtheevolutiontohealing,what waswrongbecomes corrected,andthedoctorsometimes emergesas ahero. Insuch narratives,thephysician orhealthprofessionalisthemainactororactressinthescene andthediseaseisan enemytobeconquered.Themonologicaldiscourseoftheillperson is torecountthatthetreatmentwasefficientandeffectiveoratleastis expectedtoleadto healing.Restitutionstoriesareappropriateforthosepatientswith greatlikelihoodofcure andareoftenrelatedwhenillness isinaninitialphase.TheyarewellillustratedbyFrank asfollows: “Restitutionstories representthetriumphantoptimismofmedicalscience.” Doctorswhoaresearchingforsuccessfulclinicaloutcomeandefficiencyareeasily attractedtothis kindofnarrative. Inthesestories,thesubjectivityofthepatient,which shouldbeanill person’s mostsignificantcharacteristic,vanishesalmostentirelyinthe healthcareprofessional’s recountingofthepatient’sstory.Inourcountry,as aresultof 88 DDee BBeenneeddeettttoo eett aall..:: OOnnccee UUppoonn aa TTiimmee.. .. .. AAtt TThhee TTeenntthh SSOOBBRRAAMMFFAA IInntteerrnnaattiioonnaall aanndd AAccaaddeemmii...... fragmentedtraining, mostofdoctorsarenotusedtopayingattentiontopatients’stories, andwheneventually,theydosobysomeinnerimpulse,theytendtowanttotell restitutionstories.Certainly,illpeople’sfamilyandfriendsalsowanttohearthesekinds ofnarratives,wherehealthandwell-beingarerestored. Herearesomefragments ofrestitutionstories: Ilearnedwithmypatients,forinstance,thatmanyofthemkeepinsideseedsof healingandifsomeoneputwateronthesesseeds,theysproutinsurprisingways. Shegazedatapointandtearspouredfromhereyes.Then,Ididsomething I thoughtisforbiddenforadoctor–Iclosedthedoor,tookher hands,satdownon herbedandaskedherto tellmewhatwas disturbingher.Andforthefirsttime,as Icouldapprehend,shespokeabout herfeelings, suffering,andemotional painto adoctor…Nodoctor haddiscussed hertreatmentandalthoughshethought she couldbehealed,shehad alsomanydoubts.Aftertheclarification,shegotcalmer. Therewasanunaccompanyinganother patient inanearbybed. WhenIsaid good-bye,shewhispered tome:‘Youareyoung,butneverforgettositbytheside ofyourpatients whentheyareinneed’.Thatpatientadheredandrespondedvery welltothetreatmentandwentbackhomeinadifferentmood,withhercourage pluckedup. Unfortunately,itisnotunusualforhealthprofessionals tofacecircumstancesof profoundsufferingandpainthathavenopossibilityofremissionorsolution.Incurable diseases ortheimminent deathofafamilymemberaresituationsthatgeneratechaos stories,inwhichthereis noapparentorderinthesequenceofevents.Chaosstoriesare characterizedbyincompletesentences,periodsofsilenceandquestionswithnoanswers. Sometimes,doctorsbecomeemotionallyimmobilizedinthesesituationswiththe subsequentreactiontorunawayortoignoretheconditionsthatmakethemfeelimpotent. Chaos storiesaretheones wedon’t wanttohear, becausestudents inmedicalschoolare nottaughttodealwithfeelingsofpowerlessness,anddoctors usuallyseeksolutions, eveninsituations wherethereisnosolution,exceptlistening. Itisdifficult toteach medicalstudents tohavethatattitude,becausetheyaretaughtto giveanswersallthe 99