[PDF] Towards a sociology of diagnosis: Reflections and opportunities

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Introduction

Introduction

In19 78MildredBlaxterdeclaredinthe pagesofSocialScience& Medicinethat:'Theactivity knownas"diagnosis"iscentral tothe practiceofmedicinebutis studiedlessthan itsimportance warrants'(p.9).Thirty-o ney earslater,shepublisheda moving autobiographicalarticleinthejournalSociologyofHealth andIllness recountingherown diagnosisofcancer (Blaxter,2009).Whatis strikingaboutthis article,"TheCaseof theVanishingP atient"is firstthesociological impactwhichshe assignedtodiagnosis and second,thew aysin whichshehaswovensociologicaltheories throughherdatatomake senseofher personaldiagnosticproce ss. Shedr awsuponscienceandtechnologystudies(STS), culturalsoci- ology,illnessnarratives, sociologyofpr ofessions,relationsbetween practitionersandpatients,thesociology ofknowledge andfinishes byofferinganalyticinsightof andpragmatic implicationsforhealth caredelivery .Diagnosis,shedemonstrates,servesasa prismwhich absorbsandre flectsapanopl yofissues centraltotheexperience andpracticeof medicineandhealth care.Italso evokescollectiv e responses,asRobertAronowitz(1991)haswritten, providingan insightinto thesocietyinwhichdiagnoses occur. Thesociologicalstudy ofdiagnosisboth requires,and can contributeto,adiversity ofsociologicalmethods andtheories, makingthedev elopmentof asociologyofdiagnosisasa discrete fieldofstudy aviablee xercise.The raisond 'êtreforthis Special Issueisto demonstratethe meritsofsuch asub-disciplineby bringingtog etheracollectionofempiricalpieces confirmingthis topicasan innovative veinofresea rchandnudgingforwardthe researchagendasthat itgenerates.Inso doing,webuild onafew isolatedclaimsthatasociology ofdiagnosiscan formaconcr ete bodyof workand canbothdeploy, andcontribute to,thesociolog- icalunderstandings ofhealth,illness andhealthcare.

Callsfora sociologyofdiagnosis

NearlytwodecadesonfromBlaxt er'spleathat sociologists shouldpay moreattentiontomedical diagnosis,PhilBrown (1995)emitteda similarcall.It washe whofirstusedthe term'a sociologyofdiagnosis, 'andargued thatitshould formacentr al strandofmedicalsociology'sendeav ourtoarticulatethesocial constructionofhealth, illnessandperha psmostcruciall ydisease (moreonhis currentview slaterin thisarticle).Althoughthepaper itselfwas influential,any attempttoforgea sociologyofdiagnosis waslostuntilthecall wastaken upinrec enttimesby Annemarie Jutel(2009; 2011b),one oftheguest editorsof thisissue.In her reviewpaperpublishedinSociologyofHealth andIllness andin herbookPuttingaN ametoIt: DiagnosisinContemporarySociety , sheargued thatdiagnosisconstitut esama jorclassificationtool formedicineand outlinedthewo rksuchtools perform.Within theconte xtofWesternbiomedicinediagnosis:v alidateswhat countsasdisease; offersexplanations andcoherespatients 'symp- toms;legitimatesillness, enablingpatientstoaccessthesick role; providesameanstoaccessresources andfacilitates theiralloca- tion;andforms thefoundationof medicalauthority. Butclosescru- tinyreveals thatthepictureisnota simpleone.Medical diagnoses arealsocontested, sociallycreat ed,framedand/orenacted. And whilediagnosis ofdiseaseis 'centraltothe practiceof medicine' asBlaxter putit(seeabove) andasthe contextof thepractice of medicinehas changed,so toohastheplayofsocial, political,tech- nological,cultural andeconomicforceswhichimping eupondiag- nosticcategories anddiagnosticprocesses. Inthedecades betweenBlaxt er'stwopapers, post-industrial societieshav eundergonesignificanttransformation. Mostnotable hasbeenthe riseofneo-liber alism,globalisationand marketisa- tion.Thishas meantthat whilediagnosisstill formsthefoundation ofclinicalpr actice,theda y-to-dayactivityof diagnosinghas becomeincre asinglyporous,permeatedbycommercialint erests, consumerismandcommodi fication.Diagnosis nowrepresents muchmore thanapatientconsultingaprac titionerwithillness symptomsandcominga waywith confirmationofdisease, ifindeed iteverdid. Diagnosticcategories areless bounded,withthe dualismofdisease andnon-disease collapsinginthe faceofnew categorisationsofpotentialdiseaseand riskfactors.Pat ientsnow bringexpertise, knowledge,andexpectations totheclinic.Their conceptualisationofcauseandconseq uencesofdisease classifica- tionis takenmoreseriousl ybypolicy makersandcare providers. Practitionersinturn,ar eextolled topositionthe autonomouslay personatthe centreoftheir care,rather thantheacq uiescent 'patient.'Buteven atthismicrolevel,diagnosing constitutes asocio-politicalpr ocessthat begsscrutiny.Thesear esomeof the themesexplored inthepapersinthis issueandt owhichwe return inourdiscussion below.

Diagnosis-anabsentpr esence

Wecanre-readthe literature inthesociologyofhealthand illnessandsee thatdiagnosishas notbeenneglect ed,andcertainl y studiesof diagnosisasa socialprocess areclearl ypresent. Similarly thecontestati onandconsequencesofdisease classificationare evident.Onecould arguethatdiagnosis hashadan absentpresence inthe sociologyofhealth andillness.It figuresina numberof importantdebates andliteratureswithinthefield,mostob viously

Contentslistsavailable atScienceDirect

SocialScience& Medicine

SocialScience& Medicine73 (2011) 793-800

0277-9536/$-seefrontmatter ?2011ElsevierLtd.Allrightsreserved.

doi:10.1016/j.socscimed.2011.07.014 inthehis tory ofmedicine,medicalisationandthe sociol ogyoftech- nology.Hereweseeill ustrativeexamples ofhowdiseas ecategories are:identified(for example,Alzhe imer'sdis ease(P.Fox,1989),PTSD (Scott,1990),overweight(Jutel,2006)andL ymedisease(Aronowitz,

1991))andena cted(forexample,atherosclerosis(Mol,2002);breas t

cancer(Klawiter,1999),and anore xianervosa(N.Fox,Ward, &O'Rourke,2005)).We alsosee,as AllanHorwitzhas eloquently demonstrated,howbothinternalfact ors(interprof essional dynamics)andexternal(drug industry andadvocacygroups)serve toconfigureandreshape diagnos is(inthiscase,MajorDepr essive Disorder),withdramaticimpactonmentalhealth, itspractice,treat- ment,resear chandepidemiology(Horwitz,2011). Diagnosisisalso evidentin thesociologyof illnessexperience andillnessnarrati ves.Thenaming ofadiseasecangive riseto 'bio- graphicaldisruption'(Bury,1982),a'lossofself '(Charmaz,1983 ) and'narrativereconstruction'(Williams,1984),ora symbolictrans- formation(Fleischman,1999).Diagnosisis themeansby whichwe gainaninsight intothe biographicaland temporaladjustments(cf Bury,1982andWilliams,1984).Empiricalstudies haveyielded data demonstratingtheimpactandconseq uenceofdiagnosis on people'slives, producinganimportantset ofconceptstomake senseofthe diagnosticexperience. Diagnosisorganisesdisease, providinganame,atrea tment,adirec tiontoan ailment(Balint,

1964).Itis aninterpretativeprojectinvolvinga backandforth

exchangebetweenlayandprofessionalto findasatisfact oryexpla- nation(Leder,1990).Anddiagnosis canbea narrativesurrender, whereala yperson'sstory ofembodiedexperienceisre- appropriated,andrecastby medicine(Frank,1995).Diagnosisis astartingpoint, thefoundationfrom whichsense-makingand experiencesarecrafted. Diagnosticprocessesareprom inentinthosestudieswhich examinecontesteddiag noses;especiallythosewhere laypeopleor activistshavecontributedt otheidentificationandconfirmationof diagnosticcategories.Soci almovementshavedebunkedsome medicaldiagnoses(fore xamplehomosexuality(Kirk&Kutchins,

1992),and hysteria( Shorter,1992))and contributed totheestablish-

mentofothers (fore xample,miner'slung(Bloor,2000)Lyme Disease(Aronowitz,1991),Gulf Warsyndrom e(Brownetal.,2001; Zavestoski,Brown,Linder,McCormick,& Mayer,2002;Zavest oski etal., 2004),RSI (Arksey,1998)andHIV/AIDS(Epstein,1996)). Diagnosesare animportantfoundationforsome formsofmed- icalisation(Barker,1998;Conrad, 1975;Lee&Mysyk, 2004; Rosecrance,1985;Tiefer,1996):pro vidingalabeltowhichmedicine cananchorits authority, andaround whichitcanexpress its concernandset itsagendas.Capturi ng,ina medicaldiagnostic label,unacceptable socialconditions(shyness,un wanted childless- ness,inadequate feelingsoflust,orageing) laysthem barefor exploitationby'enginesofmedicalisation 'aboutwhichPeter Conrad(2005)andothers (Healy,2006;Moyn ihan,Heath,& Henry,2002;Phillips,20 06;Wolinsky,20 05)have written. ThisSpecialIssue haspapersthat speaktothese on-goingsocio- logicalconcerns:classi fication,illnessnarrati ves,la yepidemiology, sociologyofscience andtechnology, socialmovements andmedi- calisationareall touched upon.Av arietyofmethodologiestoo aredeployed.But whattranscendsallthepapersisthefocus on diagnosisinterms ofcategorisation, processor consequencewith mostpapers illuminatingallthr eeofthese dimensionsofdiagnosis. Beforewee xaminethepapers themselvesintermsofwhat they addto theseon-going debates,letus reflectonwhat adiagnosis is,withinthe contextof healthandmedical care.

Whatisdiagnosis?

Atitsmost basic,amedical diagnosisisbo thacateg oryand apr ocess(Blaxter,1978).Amedical diagnosisisper hapsmost readilyrecognizedas theofficiallabelthat classifiesdiseaseor amedically-r elatedproblem.Clinicalpractitionersareable to drawuponarangeof nosologies,taxonomies andother authorita- tiveclassificationsystems fordiagnosticguidance.TheInternational StatisticalClassificationof Disease,Injuriesand CausesofDeath (ICD) theDiagnosticand StatisticalManual ofMentalDisorders(DSM), ReadCodes,SystemizedNomenclature ofMedicine(SNOMED)and dozensofo therclassi ficationsystems, withvaryingpurposes,are amongstthearra yofresour cesavailabletoclinicians, statisticians andhospitalsand states( Jutel,2011a).However ,eachclassification systemhasitso wnhistory, andserves itsownpurposes.TheICD grewoutofapolitical contextin theearly 20thcenturywherei n Europeancountriesweree xtendingtheir empiresandtheirciti- zenry,traversingboundaries ineverquickerand moreinvasi ve ways,bringing,amongotherthings, virusesandepidemics to newlocations.Itsoughtto trackand comparediseasepatt erns betweenpopulations(Bowker,1996).TheDSM, ontheothe r hand,initially publishedintheearly1 950sasa slimvolume of psychopathologywas, byitsthirdrevisionin 1980and henceforth, tobecomeatoolby whichpsy chiatrycouldassert itsauthorityat timewhenman yother professionswereencr oachinguponits domain(Mayes&Horwitz,2005 ).These classificatoryinfrastruc- turesdidfarmore thansimply developsimple taxonomies. Thediagnosis findsexpressionoutsideoftheclassificatoryinfra- structurewhenanindividual decidesheor sheisill andpresents thissuppositionto someonewithdiagnostic authority.Usuall y adoctor(but alsoanurse practitioner, physiother apistorothe rs) examinesthepatient,assessesthe evidence,anddiagnoses their ailment.Thediagnosis may(or maynot) takeintoaccount alay versionofevents;may (ormaynot) relyuponclinicaljudgment, oralternativ elylaboratoryfindings;andmay (ormaynot) align withthepatient 'sowndiagnosis ofhersympt oms. Analyticallyseparate,the categoryandprocessof diagnosisare ofcourseine xtricablyint erlinkedandmutuallyconstitutive.What ispoignant hereisthe degreeto whichthediagnosis does'work.' Assoon asitis defined(category), orimplemented(process),it categoriseshealthrealitiesintangible ways, determiningwho has accesst owhatresources,under whosejurisdictionthe manage- mentoftheconditionwillfall, andwhatthe individual'sexperience nowmeansintermsof identityandprogno sis.Asclassi fication theoristsBowkerandStar(1 999)pointout,the diagnosticcategory , onceformalized byitsinclusion inaclassi ficatoryscheme(say ICD orDSM),cements aparticularview ofillnessthat willinvariably privilegecertainvoices,andsilence others.Itis theexpert consensuspanelthat tendsto have thelastwo rdinthe establish- mentofdiagnostic categories.R obertArono witzhasunderlined thattheevidence viewedby suchpanelsto arriveupontheirdefi- nitionsofdisease cannot beeasily separatedfromknowledgeof whowillbene fit(oralter natively, suffer)fromadiseasebeing namedinone way, asopposedto another(Aronowitz,2001).And ofcoursethese arenotstatic, butchange overtime notleastas theyareapplied andimplemented inav arietyofcont exts. Weareusing Blaxter's(19 78)diagnosis-as-categoryand diagnosis-as-processasthestartingpoint forintroducing the contentofthisSpecialIssue. However ,weha veadded classificatory decisionsofour ownand havea thirdrubricd'consequencesof diagnosis'dtodescribetheimportantpapers whichfollow this introduction.

Diagnosisascateg ory

Whilemedicalclassi ficationofthe 18thcentury restedon symptom-basedtaxonomies,wherein therewasacorresp ondence betweenthesymptom andthedisease; andthemedicalclassifica- tionof the19th centurydetermined thatdiseaseswerebasedon Introduction/Social Science& Medicine73(20 11)793 -800794 observablepathologicallesions;20thcentury classifications becameincre asinglyfuzzy.Blaxter's(19 78)papertookthe caseof alcoholismto demonstratethisproblematic. Itwasanexample of thevogueto reinsertthe personin tothepatient'sbody. A'liberal- isingof thediseaseconcept, 'that'representsavery fundamental switchofemphasis: anackno wledgementof themulti-causal natureofdisease,anatt emptto seeillnessas related toahostof psychologicalfactors'(p.10).Hercasestudyshowsthat disease labelssuchas alcoholismcanbe difficultt oassigninpractice. Thepatient-as-personwhose actionswe remoredif ficultto tamethanbiological processesmade doctorsrel uctanttoapply thediagnosisof alcoholism.Once apersonw asdiagnosedas an alcoholic,thedocto r'spotent ialcontributionbecamelessclear. Blaxterdemonstratedhow theabsenceofasuitablemedical prescriptionforaparticular diagnosisledto doctors'resistanceto usethisdiagnostic category. Nevertheless,as Blaxterdraftedher paper,agrowingarr ayofsocial taxonomiesdesignedtocaptu re bothdiseaseandbehaviourwerebeingdev elopedforusein primarymedicalcare andforstatistical recordsof morbidity throughouttheworld. Thediagnosisas categorywasbecoming DavidArmstrong'spaperin thisissuehas somedegreeof over- lapwithBlaxt er'sthesis.He addressesthe fundamentalmatter of classificationstructur ethroughhisanaly sisofdiagnosisand nosologyinprimary care(Armstrong,2011 ).LikeBlaxt er,he docu- mentsho wvariousclassificationschemasdeploy edbynational governments,andmoreparticularly theWorld HealthOrganisa- tion,aimedto capturethe patients'symptoms,andpsycho-social background.Crucially,for hisargument,theywereintendedto capturethereasons patientsgive forseekingmedicalhelp.Thus whatwesee isnota 'patientasint erlocutorfor thepathologybut thepatientas reflectivebeing'.Unlike thepatientinthe throughwhichthedoctor couldaccessthe patient'sproblem, the contemporarypatientisareflectivepersonwithwhom themedical practitionermustengage.Armstr ongdemonstr ateshowmedical nosologies,through theirapplicationintheprocess ofdiagnosis, attempttopromot eandmaintain acertainmedicalreality.His reviewofmoderndiseaseclassi ficationsystems underlineshow diseasesanddiagnoses are madeapparent throughthesesystems whichalsoconstruct thedifferent identitiesthatthese systems crystallize. Theformation ofmedicalidentities isapoint ofdeparture for CharlotteSalterandhercolleagues.In theirpaper, 'Risk,signifi- canceandbiomedicalisation ofa newpopulation:older women's experienceofosteopor osisscre ening'theydiscusshow clinical riskassessmentsdetermine theprobability offracture when combinedwithdual energyX -ray(D XA)scanningt omeasure bonemineral densitythuspredictingandtreating anindividual patient'sabsolute riskoffractureand possibleosteoporosis (Salteretal., 201 1).Thefocus oftheirpiece isonthe consequences forpatients,but there isanimportant pointherethatrelatesto diagnosis-as-category.Theexampleservesasillustra tionofthe waysinwhichcontemporaryclassi ficatorytensionsexistbetw een theclinicalcateg orisationsanda changingwidersocietalcontext. Citingthewor kof NovasandRose(2000) ,Salteret alhighlight howthispr e-diseaseidenti ficationgives risetoanewcategory of patientwhoseat riskstatuscomprises anovel sourceofsocial iden- tity.Thewellpersonis diagnosedasthe person'atriskof illness', notonly throughbeha viouralorsocialcharacteri sticsbutincreas- inglythrough theidentificationofbiological makers.Thishigh- lightstheblurry frontier betweenrisk factorsforadiseaseand thediseaseitself. Consequentl y,ther eisatemporalandspatialfrac- turingofthe diagnosticcat egory(andthe diagnosticprocess) that contributestothecollapsing oftheundiagnosedanddiagnosed dualism.Diagnosticlabels nowgo beyonddisease itselftoinclude riskfactorsfor disease.Inthiscase,thecategoriesmaybe overshad- owedbydiagnosticpredictors. Atthesame timethisgiv esriseto anewsource ofthesocial identity,namely apre-disease (riskof disease)status. Genomictechnologies offerfurtheropportunitiestoblurthe distinctionbetween riskanddiseaseashasbeen discussedelse- where(Finkler,Skrzynia,&Evans, 2003),and,it shouldbesaid, betweencategoryand process.AsPatriceBourretand his colleaguesinthis volumebring toour attention,genomicinforma- tionbringsa prognosticand predictive dimensiontothepicture of breastcancer(Bourretetal.,201 1).Moleculardiagnosis becomes adifferent formofdiagnosis:onewhich takesdiagnosisout of thedoctor 'shandsand intothelabora tory,where acellularcon fig- urationreplacestheclinical judgementas confirmatory.Thelocus oftheclinical diagnosticprocess canberea lignedbypost- genomictechnologies.Bourr etetalfocusonmore thanthelabora- tory-clinicalinterface, butonthewiderlaboratory-cli nical- commercialtriadpresentin cancergenomics. Gene-expressing profilingtestsare apointat whichcommer cial,clinical,regu latory, andpatientint erestscollide.Bourret andhiscolleagues'paperon post-genomicmedicineprovides aninsightint otheshiftingnature ofdiagnosis withinthelandscape ofmoleculartechnologies .The doctor'sjudgement, onemightspeculate,isbeing supersededby the'truth'ofthelabor atoryfinding.Certainly, ithasbeenshown elsewherethatworking inconsumeristenvir onmentsdoctorsarequotesdbs_dbs22.pdfusesText_28

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