Disease prestige and the hierarchy of suffering - The Medical ...

Suffering should not be hierarchical, and care should not be predicated on the prestige that a disease attracts. Symptoms may herald illness ... BasicSearch Advancedsearch search UsetheAdvancedsearchformorespecificterms. Titlecontains Bodycontains Daterangefrom Daterangeto Articletype Author'ssurname Volume Firstpage doi:10.5694/mja__.______ Search Reset  close Connect Issuesbyyear Supplements Careers Articletypes Editorials Research Researchletters Guidelinesandstatements Narrativereviews Perspectives Ethicsandlaw Medicaleducation Reflections Competitions Letters Advertisement close Perspectives Volume208 Issue2 Diseaseprestigeandthehierarchyofsuffering LouiseStone MedJAust2018;208(2):60-62.||doi:10.5694/mja17.00503Publishedonline:5February2018 ARTICLE AUTHORS REFERENCES picture_as_pdf Download Topics Generalmedicine Socialdeterminantsofhealth Ethicsandlaw RelatedArticles Sufferingshouldnotbehierarchical,andcareshouldnotbepredicatedontheprestigethatadiseaseattracts Symptomsmayheraldillness,butitisthediagnosisthatannouncesthepresenceofdisease.Whiletheexperienceofillnessissubjective,diseaseisauthorisedbyahealthprofessionalthroughdiagnosis(Box1).1Agooddiagnosisexplainspathology,suggestsprognosis,enablesaccesstoservices,groundsevidence-basedtherapiesandprovidesanexplanationthatmakessenseofapatient’ssuffering.Beyondthis,adiagnosisjustifiessickness,providingthepatientwitharationalefortheirdisabilities—forfriends,family,employees,butmostimportantlyforpatientsthemselves.2Tobeleftwithoutadiagnosisistobeleftwithoutastory,withnowayofmakingsenseofsufferingorcommunicatingdistresstoothers.Diagnosis,then,isoftenarelief,evenwhenthediagnosissuggestsableakfuture(“thankgoodness,Iknewtherewassomethingwrong”).3 However,notalldiagnosesareequalintheeyesoftheworldinwhichwelive(Box2).Inthelotteryofillness,carecanvaryacrossthediagnosticspectrum,dependingontheprofileofthedisease.Theideaofdiseasehierarchywasdiscussedasearlyas1943,whenprestigewasseentobe“basedontheextenttowhichsymptomscan—orcannot—bereadilylocalized”.4AlbumandWestinsuggestedthat“diseasesandspecialitiesassociatedwithtechnologicallysophisticated,immediateandinvasiveproceduresinvitalorganslocatedintheupperpartsofthebodyaregivenhighprestigescores,especiallywherethetypicalpatientisyoungormiddle-aged…lowprestigescoresaregiventodiseasesandspecialitiesassociatedwithchronicconditionslocatedinthelowerpartsofthebodyorhavingnospecificbodilylocation,withlessvisibletreatmentprocedures,andwithelderlypatients.”5 Highprestigeillnesses,suchasbreastcancer,manychildhoodcancersandheartdisease,arewellunderstoodbythepopulation,andclearlyrecognisedasillnessesthatdeservesupportandcare.Manyhighprestigeillnessesarecommon,andattractsignificantphilanthropicsupportthroughwellorganised,wellfundedcampaigns.(eg,thepinkificationofbreastcancer).6Celebritypatronagefacilitatesfundraising,supportsawarenesscampaignsandsuggeststopicalarticlesinthepopularpress,althoughitcanalsoalienatepatientswhodonotfitthemarketinghype(eg,menwithbreastcancer).7Highprestigediseaseshavesupportgroupsthatsharenarrativesofsufferingandrecovery,provideconsumerexpertisetoassistpatientsandtheircarerstonavigatethecomplexityofhealthcare,andcreateopportunitiestounderstand,participateinandfundresearch.Forsufferersofcancer,fearanduncertaintymaybeeasedbythepresenceofcancercarecentres.Philanthropyandpublicfundingenablethesecentrestooffereverythingfromaccessibleparking,towigandbeautyservices,tocomprehensiveclinicalcare. However,therearediseasesthatarelesswellsupported.Somediseasesarelesseasytounderstandorcommunicate(eg,metabolicdisorders)ormaymakepeopleinthecommunityuncomfortable(eg,analcancer).Otherdiseasesareseenaslessworthy,andcommunitymembersmayperceivethatillnessistheperson’sownfault(eg,alcoholicliverdisease).Sufferersoflungcancer,eventhosewhohavebeennon-smokers,describedistressinginteractionswithpeopleinthecommunity,whodonotfeeltheydeservecarebecausetheyareassumedtobesmokerswhohavecausedtheirownsuffering.8Thesediseasesarelesswellsupported—notjustclinically,wherethereislessphilanthropicsupporttostretchthepublicdollar,butalsoinresearch,wheretherearefewercommunitysponsoredgrants.9Interestingly,therelationshipbetweenstigmaandself-determinationisnotalwaysclear.Forinstance,therearelifestyleriskfactorsforbothlungcancerandcardiovasculardisease,butheartdiseaseishighprestigeandlungcancerisnot. Highlystigmatisingdiseasesareevenlesssupported.Patientswithembarrassingdiseases(eg,inflammatoryboweldisease,urinaryincontinence)maykeeptheirdiseasesecretduetoshame.Patientswithmentalillnessesoftenavoiddisclosingtheirillnessbecauseofactivediscriminationintheworkplace,athomeorbyinstitutionssuchasinsurancecompanies.10Thishasaprofoundimpactonhelpseekingandtheabilityofhealthcareteamstoprovideappropriatecareandsupport.However,therelationshipbetweenstigmaandprestigeisnotalwayscleareither;depressionhasbecomeahighprestigediseaseinrecenttimes,despitetheongoingstigmasurroundingmentalillness.Otherdiseaseswithintensecommunitysupport(eg,HIV/AIDSandbreastcancer)wereoncehiddenandpoorlysupported. Diseaseswiththelowestprestigeattractdiscriminationinthehealthcaresectoraswellasinthecommunity.Manyareilldefined,andexistassyndromeswithoutacommonunderstandingoftheirnatureorpathology.Thisisparticularlytrueinpsychiatrywheretaxonomyisconstantlychangingtoadapttoourevolvingunderstandingwhatpsychiatricillnessactuallyis.Psychiatricdisordersstillsituneasilyacrossfoundationsinneurology,biology,psychology,sociologyandphilosophy,amongotherfieldsofhumanconcern.Thesadironyisthatmanypatientswithpsychiatricillnessaresurvivorsofchildhoodabuse;theirneedswerenotacknowledgedandmetinchildhoodand,inadulthood,theyhaveacquiredadiseaselabelthatprecipitatessimilarinvalidationinthehealthcaresystem.Thisre-traumatisingexperienceisinappropriate,unhelpfulandoftencruel.Someofthesepatientsdescribehowthediagnosisfollowsthemaroundlikeacriminalrecord,impedingtheirabilitytoobtainappropriatecare,evenforunrelatedphysicalillness.11Inthecommunity,manyofthesepatientsexperiencedistrustandprofoundisolation—they“cannotfaceengagingwithaprocessthatinvalidatestheirpain”.12 Finally,therearetheunnamedconditionswherethereisnodiagnosis,theso-calledmedicallyunexplainedillnesses.Withnodiseasename,thesepatientsstruggletoaccesscare,andhavenolanguageorconceptstohelpthemmakesenseoftheirsuffering.Theyarethe“heartsink”patientsinmedicineand“hypochondriacs”inthecommunity:invalidating,unhelpfulandjudgementaltermsthatblamethevictimsfortheirowndistress.Manypatientswithmedicallyunexplainedsymptomsattachthemselvestoonlinecommunitiesthatinvestenormousenergyinestablishingadiseasenamethatwillgivethemthevalidationtheyneed,inhealthcareandinthecommunity.13Inessence,manyofthesecontestedillnesses“behavelikeaninfectiousdiseasewithasocioculturalvector”,14changingtheirshapeandcharacterovertimeasillnesslabelscomeandgo.Contestedillnesslabelsmayprovidepatientswithasenseofcommunity,buttheyoftenrestonaclusterofnon-specificsymptomslikefatigue,non-specificpainorweakness,andthereforeattractadiversegroupofsuffererswithlittleincommon.Nevertheless,onlinecommunitiescreateverypowerfulspacesforeffectivemedicalisationthroughpeer-to-peernetworks.Patientswhoattachthemselvestocontesteddiseaselabelsdescribetheirhealthcareasabattleground,wheretheyconstantlyfightforrecognitionandvalidationfortheirsuffering.15Someofthecommunicationinthesegroupsundoubtedlyoffersparticipantsachancetoshareandrehearsestrategiestoobtaintheirpreferreddiagnoses,treatments,referralsandcertification. Thelowerthediseaseprestige,thelesssupportisavailabletothepatientinthecommunity.However,thereisalsoahierarchyofevidencethatmakesitdifficultformanylowprestigediseasestoaccessresearchfunding,generateanevidencebaseorargueforspecificinterventions.Thegoldstandardinthishierarchyisthesystematicreviewormeta-analysisofqualityrandomisedcontrolledtrials.However,randomisedcontrolledtrialshavetheirlimitations.Theyareidealforeasilydefined,highprevalenceillnesswithspecific,welldefinedinterventions,butgoodqualityevidencemaybedifficulttogenerateforlowprevalencedisorders,diseasesthatareilldefinedandinterventionsthataredifficulttostandardise.Similarly,evidenceisoftenlackingforpopulationsthatarehardertoaccess(eg,certainculturalgroups)orgroupsthatposeparticularethicalchallenges(eg,veryoldpeople,patientswithintellectualdisability).Inprimarycare,thisoftenmeansthatlowerprestigediseaseshavelessevidencetoguidecare. Ashealthcarepractitioners,ourgoalisnottoclassifydiseases,buttomanagetheimpactofillnessontheindividualtoreducesuffering.16Thisisthedifferencebetweenscienceandmedicineandistheethicaltaskofourprofession.Regardlessofwhereonthehierarchyourpatient’sdiseaseresides,weneedtomobilisetheresourcesthatdoexist,advocateforresourcesthatarenotavailableandsupportpatientswhosufferwithfewresourcesatall.Thisincludesworkingwithpatientswhoseconditionlacksevidencetoguideclinicaldecisionmaking. Itiscriticalthatthemedicalcommunityisabletovalidatesuffering,makesenseofitandmanageit,nomatterhowlittleprestigetheillnessattracts.Thelowerthediseaseprestige,thegreatertheneedfordoctorstofillthevoidinvalidationandsupport(Box3).Itisalsocriticalthatasaprofession,weconsiderourdisease-boundedmodelsofhealthcaredeliveryandresearch.Wehavestrategiesforunderstandingburdenofdisease,butlessdevelopedstrategiesforunderstandingburdenofillness.Weneedtoconsiderissuesofjusticeandequity,notonlyacrosspopulationsbutalsobetweendiseases,andweneedtocreateovertclinical,educationalandresearchprioritiesthatrecognisethecomplexitiesoffundingthebreadthofillnessthatoccursinthecommunity.Sufferingshouldnotbehierarchical,andcareshouldnotbepredicatedontheprestigethatadiseaseattracts. Box1 –Modesofunhealth1 Disease:apathologicalprocessthatincludesdeviationfromabiologicalnorm “Diseasesarevaluedascentralfactsinthemedicalview.” Illness:asubjectiveexperienceofunhealthwhichisinteriortothepersonofthepatient Illnessmayoccurwithoutdisease,orbeforediseaseisdiagnosed(eg,prodromes).Medicallyunexplainedillnessisuncomfortableforthecliniciananddistressingforthepatient:“Thepatientcanofferthedoctornothingtosatisfyhissenses—hecanonlybringmessagesofpaintothedoctor,fromanunderworldofexperienceshutoffforeverfromtheclinicalgaze.” Sickness:anexternalandpublicmodeofunhealth Sicknessisasocialrolethatisnegotiatedbetweenthepersonandthesocietywhichsupportsthem.Thesecurityofthesickroledependson“thepossessionofthatmuchtreasuredgift,thedisease…Buteventhepossessionofdiseasedoesnotguaranteeequityinsickness.Thosewithachronicdiseasearemuchlesssecurethanthosewithanacuteone;thosewithapsychiatricdiseasethanthosewithasurgicalone…Bestisanacutephysicaldiseaseinayoungmanquicklydeterminedbyrecoveryordeath—eitherwilldo,bothareequallyregarded.” Box2 –Diseaseprestigeandstigma Diseaseprestigeisthecollectiveperceptionofadisease’s“worthiness”;thedegreetowhichthesufferer“deserves”careandsupport.Asasocialconstruct,itchangesovertimeandbetweencommunities.Whilehealthisobviouslymoredesirablethandisease,adisease’sprestigereflectsthecommunity’scommitmenttocare,supportandeconomicinvestment. Stigmaisthepersonalexperienceoffeelingdiminishedanddevaluedbecauseofnegativesocialbeliefsaboutthepatientandhisorherdisease.Stigmaanddiseaseprestigehaveacomplexrelationship:somediseases(eg,depression,HIV/AIDS)attractconsiderablesocialsupportdespitethestigmaexperiencedbysufferers,whereasothers(eg,schizophrenia,urinaryincontinence)donot. Box3 –Practicalstrategiestosupportapatientwithlowprestigeandmedicallyunexplainedillness13 Validation Acknowledgethatthesymptomsarerealanddistressing Acknowledgethatmedicinehaslimitsandtheuncertaintyisfrustrating Recognisetheeffectsofcommunitystigmaandacknowledgethatthisispainful Explanation Considerandrecordphysical,psychiatricandpsychosocialdiagnosesandsymptoms Givecarefulexplanationsaboutwhatisknownaboutthedisease,andshareanyresourcesavailable Coordinationofcareandadvocacy Coordinatecaretoavoidduplicationofinvestigationsandexacerbationofiatrogenicharm Advocateforaccesstoappropriateservicesandsupport Continuetomeasurefunctionandqualityoflifeasanindexofillnessseverity Illnessmanagement Offersymptomreliefandpracticalsupporttoaddressdisability(eg,homehelp,workplaceassessment) Encouragephysicaltherapies(eg,massage,physiotherapy,hydrotherapy) Managecomorbiditiesaseffectivelyaspossible Encouragepsychologicalcaretoaddresstheimpactofillnessandunderlyingissuesthatmayexacerbatesymptoms Discusshealthylifestylegoals Minimiseharmbyavoidingunhelpfulinvestigationsandtreatments Checkfornewdiagnoseswhentheillnesseschangessignificantly(eg,theemergenceofanewsymptom)orduringayearlyhealthcheck Empathy Managethetherapeuticrelationshipcarefullyandseeksupportifitbecomesunhelpful Provenance:Notcommissioned;externallypeerreviewed. ViewthisarticleonWileyOnlineLibrary LouiseStone AustralianNationalUniversity,Canberra,ACT Correspondence: [email protected] Competinginterests: Norelevantdisclosures. 1.MarinkerM.Whymakepeoplepatients?JMedEthics1975;1:81-84. 2.NettletonS.‘Ijustwantpermissiontobeill’:towardsasociologyofmedicallyunexplainedsymptoms.SocialSciMed2006;62:1167-1178. 3.NettletonS,O’MalleyL,WattI,DuffeyP.Enigmaticillness:narrativesofpatientswholivewithmedicallyunexplainedsymptoms.SocialTheoryHealth2004;2:47-66. 4.CanguilhemG.Onthenormalandthepathological.NewYork:ZoneBooks,1991. 5.AlbumD,WestinS.Dodiseaseshaveaprestigehierarchy?Asurveyamongphysiciansandmedicalstudents.SocialSciMed2008;66:182-188. 6.KingS.PinkRibbonsInc:breastcanceractivismandthepoliticsofphilanthropy.IntJQualStudEduc2004;17:473-492. 7.ChapmanS,McLeodK,WakefieldM,HoldingS.Impactofnewsofcelebrityillnessonbreastcancerscreening:KylieMinogue’sbreastcancerdiagnosis.MedJAust2005;183:247-250. 8.ChappleA,ZieblandS,McPhersonA.Stigma,shame,andblameexperiencedbypatientswithlungcancer:qualitativestudy.BMJ2004;328:1470. 9.ViergeverRF.Themismatchbetweenthehealthresearchanddevelopment(R&D)thatisneededandtheR&Dthatisundertaken:anoverviewoftheproblem,thecauses,andsolutions.GlobHealthAction2013;6;https://doi.org/10.3402/gha.v6i0.22450. 10.ClementS,SchaumanO,GrahamT,etal.Whatistheimpactofmentalhealth-relatedstigmaonhelp-seeking?Asystematicreviewofquantitativeandqualitativestudies.PsycholMed2015;45:11-27. 11.StoneL.Blame,shameandhopelessness:medicallyunexplainedsymptomsandthe‘heartsink’experience.AustFamPhysician2014;43:191. 12.McGowanL,LukerK,CreedF,Chew-GrahamCA.‘Howdoyouexplainapainthatcan'tbeseen?’:thenarrativesofwomenwithchronicpelvicpainandtheirdisengagementwiththediagnosticcycle.BrJHealthPsychol2007;12:261-274. 13.StoneL.Managingmedicallyunexplainedillnessingeneralpractice.AustFamPhysician2015;44:624. 14.RyderAG,Chentsova-DuttonYE.Depressioninculturalcontext:“Chinesesomatization,”revisited.PsychiatrClinNorthAm2012;35:15-36. 15.DumitJ.Illnessesyouhavetofighttoget:factsasforcesinuncertain,emergentillnesses.SocialSciMed2006;62:577-590. 16.SadlerJZ.Valuesandpsychiatricdiagnosis.Oxford:OxfordUniversityPress,2005. 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