REVISTA
BRASILEIRA
DE
ANESTESIOLOGIA
OfficialPublicationoftheBrazilianSocietyofAnesthesiologywww.sba.com.br
MISCELLANEOUS
Structuring
a
palliative
care
service
in
Brazil:
experience
report
夽
João
Batista
Santos
Garcia
a,b,∗,
Rayssa
Fiterman
Rodrigues
c,d,
Sara
Fiterman
Lima
eaDisciplineofAnesthesiology,Pain,andPalliativeCare,UniversidadeFederaldoMaranhão,SãoLuís,MA,Brazil bPostGraduateProgram,UniversidadeFederaldoMaranhão,SãoLuís,MA,Brazil
cUniversidadeFederaldoMaranhão,SãoLuís,MA,Brazil
dAcademicLeagueofPain,UniversidadeFederaldoMaranhão,SãoLuís,MA,Brazil eUniversidadeCeuma,SãoLuís,MA,Brazil
Received28April2013;accepted10June2013
Availableonline29April2014
KEYWORDS
Palliativecare; Cancer; Report
Abstract
Backgroundandobjectives: inBrazil,palliativecare(PC)isnotproperlystructuredandthat
realitytransformsthisthemeinapublichealthproblem;therefore,initiativesbecomerelevant
inthiscontext.Thispaperaimstosharetheexperiencethatoccurredinanoncologyreferral
hospitalintheStateofMaranhãoandpresentinitiativesthathelpedinthedevelopmentofPC
Service.
Experiencereport:thehospitalhadanoutpatientPainandPCService,butwithoutspecialized
beds.Theterminallyillpatientsstayedincommonwards,whichcausedmuchunrest.A
sensi-tizationprocesswasinitiatedinthehospitalthroughinitiatives,suchasaphotocontestcalled
FlashesofLifeandawardcalledRoomofDreams,designedinpartnershipwiththearchitecture
courseattheUniversidadeEstadualdoMaranhão.Theprocessculminatedinthegrantingof
wardstothePCandinthecommitmentoftheFoundation,sponsorofthehospital,torunthe
project.
Conclusion:thisexperiencewasareproduciblelocalinitiativefortheestablishmentofPCina
cancerhospital.LocalinitiativesarevaluableinBrazilbecausetheyfavorasignificantnumber
ofpatients andshow itseffectiveness inpracticeto governmentsandsociety. Tostructure
aPC service,itis essentialto establish prioritiesthat includetheassignment ofdrugs for
managementofsymptoms, humanization, multidisciplinarity,sensitizationandeducationof
professionals.
©2013SociedadeBrasileiradeAnestesiologia.PublishedbyElsevier EditoraLtda.Allrights
reserved.
夽 StudyconductedattheInstitutoMaranhensedeOncologiaAldenoraBello,SãoLuís,MA,Brazil.
∗Correspondingauthor.
E-mail:jbgarcia@uol.com.br(J.B.S.Garcia).
PALAVRAS-CHAVE
Cuidadospaliativos; Câncer;
Relato
Aestruturac¸ãodeumservic¸odecuidadospaliativosnoBrasil:relatodeexperiência
Resumo
Justificativaeobjetivos: noBrasil,oscuidadospaliativos(CP)aindanão estãoestruturados
adequadamenteeessarealidadetransformaessatemáticaemumproblemadesaúdepúblicae
fazcomqueiniciativasnessecontextotornem-serelevantes.Estetrabalhoobjetiva
compartil-haraexperiênciaocorridaemumhospitaldereferênciaemoncologiadoEstadodoMaranhão
eapresentariniciativasqueauxiliaramnodesenvolvimentodoServic¸odeCP.
Relatodaexperiência:nohospital,haviaumServic¸odeDoreCPambulatoriais,porém sem
leitos especializados.Ospacientesem fasefinaldevidaficavamemenfermariascomuns, o
quegeravamuitainquietac¸ão.Foiiniciadoumprocessodesensibilizac¸ãonohospital,pormeio
deiniciativascomoumconcursodefotografiasintituladoFlashesdaVida,eumaenfermaria,
intituladaQuartodosSonhos,foiprojetadaemparceriacomocursodearquiteturada
Univer-sidadeEstadualdoMaranhão.OprocessoculminoucomaconcessãodeenfermariasaosCPe
comocompromissodafundac¸ãomantenedoradohospitaldeexecutaroprojeto.
Conclusão:essaexperiência constituiuumainiciativa localreprodutíveldedesenvolvimento
dosCPemumhospitaloncológico.AsiniciativaslocaisencontramgrandevalornoBrasil,por
favorecerumexpressivonúmerodepacientesedemonstrar,naprática,suaeficáciaaos
gover-noseàsociedade.Paraestruturac¸ãodeumservic¸odeCPéimprescindíveloestabelecimento
deprioridades,queincluemacessãodefármacosparaocontroledossintomas,ahumanizac¸ão,
amultidisciplinaridadeeasensibilizac¸ãoeeducac¸ãodosprofissionais.
©2013SociedadeBrasileira deAnestesiologia.PublicadoporElsevierEditoraLtda.Todosos
direitosreservados.
Introduction
Modern techniques for improving the patient’s health are important, but they become incomplete if different paradigmsarenotconsidered,especiallywhenthechances of cure are limited. Technological advances in medicine shouldbeproportionatetothehumanneed ofcompassion fortheterminallyillpatientsandtheirlovedones.1
Within this context, palliative care (PC) emergedwith thepurposeofcaringforpatientsuntiltheirlastmoments of life, seeking as much as possible, through a multi-disciplinary approach, to minimize their discomfort and givingemotionalandspiritualsupporttotheirrelativesand friends.2
PCisanewscience,definedbytheWorldHealth Organi-zation (WHO) in 2002, currentlydefined as‘‘an approach that improves quality of life of patients and their fami-liesfacingtheproblemassociatedwithlife-threatenillness, throughthepreventionandreliefofsufferingbymeansof early identificationand impeccableassessment and treat-mentofpainandotherproblems,physical,psychosocialand spiritual’’.3
AccordingtotheWHO,PCprovidesrelieffrompainand otherdistressing symptoms;affirmslife andregardsdeath asanaturalprocess;intendsneitherhastennotdelaydeath; integratesthepsychologicalandspiritualaspectsofpatient care;givessupporttohelppatientsliveasactivelyas pos-sible until death; gives support tohelp the family during patients’illnessandintheirownloss;usesateamapproach toaddresstheneedsofpatientsandtheirfamilies,including counselingonloss,ifnecessary;providesqualityoflifeand maypositivelyinfluencethecourseofdisease;isapplicable earlyincourseofillnessinconjunctionwithothertherapies
intendingtoprolong life; understand andmanage clinical distressingcomplications.3
The WHOconsidersPCasanurgent humanitarianneed worldwideforpeoplewithcancerandotherfataldiseases. Inlessdevelopedcountries,PCisofparticularimportance, asahighproportionofpatientsarediagnosedinadvanced stagesofdisease,whentreatmentsarenolongereffective.3
InBrazil,theagingpopulation,theincreasingincidence ofcancerandtheemergenceofacquiredimmunodeficiency syndrome(AIDS)increase theneed forthistypeofcarein thecountry.4
Regardingcancer, datafromDatasusshowthat in2010 neoplasmwasresponsiblefor15.74%ofdeathsinBraziland for11.22%inMaranhão.Inabsolutenumbers,thisamounted to178,990deathsinBraziland2822inMaranhão.5In
con-trast, thereis noPC structure in the country that meets theexistingdemand.Thereisaminimumsupplyof special-izedbeds, whichis restricted tothe big cities. Thus,the conditioninwhichthe deathsduetocanceroccurredand continuetooccurshouldbeconsidered.
Inthispaper,wediscusstheexistingneedsforstructuring aPCservicewithintheBrazilianrealityandreportthe expe-rienceofagroupthathelpedthemtobemetinanoncology unit.
Experience
report
Studydesign
Studycenter
IMOABisahighcomplexityoncologycenter,areferral hos-pitalforcancerintheStateofMaranhãosinceitsfounding in1966.Itisamongthe65painandpalliativecareservices inBrazilindicatedbytheBrazilianAssociationofPalliative Care(BAPC).
Thecenterhaswardbedsforadultsandoncopediatrics,a surgicalcenter,intensivecareunits,anoncologicemergency careserviceofchemotherapyandradiotherapy,and outpa-tientservices.Approximately80%ofvisitsareprovidedby theUnifiedHealthSystem(SUS)andtheremainderbyhealth insuranceorprivate.
In2003,theIMOAB’sPainandPalliativeCareServicewas structured,withoutpatientandwardvisits,however, with-outbedsdedicatedtoPC.Thisserviceisapracticefieldfor theAcademicLeagueofPainofMaranhão(LAD-MA), Univer-sidadeFederaldoMaranhão(UFMA),whichplayedakeyrole intheexperiencereportedbelow.
Worldstrategies
Photographcontest-flashesoflife
DespitehavingaPCservice intheinstitution,itwasdone incommon,non-specificclinicsandwardsinwhichpatients receivedtreatmentalongside otherterminallyillpatients. This situation generated much unrest, which sparked the interestofgivingprominencetopalliativecareinthe insti-tutionanddrawattentiontotheproblem.Sotheideaofthe photocontestFlashesLifeemerged----awayofencouraging hospitalstafftoobservetheirpatientsandseethemin dif-ferentsituations,needs,sufferings,andjoysandrecording anddisseminatingthese‘‘looks’’bothinsideandoutofthe IMOAB.
Initially,aregulationhasbeenpreparedwithallthe con-test information, as well as its primary objectives. This regulation, together with the application forms, was left intheDepartmentofHumanizationof thehospital,inthe handsof the professionals involved withthe project who couldgivethenecessaryinformationandincentives.
Forpromotion,posters weredisplayedin flannelgraphs at thehospitaland leafletsdistributed. LAD-MA,together withrepresentativesof the Department of Humanization, alsomadevisitstovarioushospitaldepartmentstoadvertise thecontest.
The contestwas open to all employees of the IMOAB. Entriesand receipt of thephotographs were madein the DepartmentofHumanization.Thephotoswerereceivedin CDandshouldbeofpatientstreatedattheinstitutionand photographed by employees. Each patient had tosign an informedconsent,allowingtheuseofimagesbythe organi-zation.
In orderto encourage participation,the top three fin-isherswin cashprizes and the following seven honorable mentions. The contest was supported by the pharmaceu-tical industry, which provided the financial support for prizes.
Photographs werejudged byprofessionals fromvarious fields,whohadnoemploymentrelationshipwiththeIMOAB. The judging panel was composed by a photographer, an artist,ajournalist,anurse,apsychologist,andaphysician.
The contestwaslaunched inlate May 2011 andlasted untilthebeginningofAugust,dateoftheawardsceremony, whichtookplaceintheauditoriumoftheRegionalCouncilof Medicine,withthepresenceofguestsandhospital employ-eesandmembersoftheLAD-MA. Itwaslaterpublishedin thelocalnewspaper,whichoccupiedanentirepagewiththe winningphotosandmessagesofhumanization.
Thephotoswereusedtodecoratethestandofthe labora-torythatsupportedtheprojectinthe9thBrazilianCongress onPain,heldinFortaleza(CE)inOctoberofthesameyear. It was also used in calendars, which were distributed to hospitalsandeducationalinstitutionsofthecity.
Duetowhatwasobserved,theIMOAB’sboardofdirectors announced thatitwould grantthreewards (two withtwo bedsandonewithonebed)tothePainandPalliativeCare Serviceofthehospital,aimedatterminallyillpatients.
However, the wards’ condition raised questions and reflectionsabouttheidealconditionsofaplaceintendedto houseapersoninhis/herlastdaysoflife.Itwasnotedthat toachievetheprinciplesofPCinthehospital,andactually providewelfaretopatients,itwouldbenecessarytoadjust the wards for this purpose. And withthis intent, another projectcameonthescene.
Projectextension:theroomofdreams
TheRoomofDreamswasapartnershipbetweentheIMOAB’s Pain Service and PC and the architecture course at the UniversidadeFederal doMaranhão(UEMA). Itconsisted of an extensionproject in which11 studentsof architecture (UEMA)wereinsertedattheIMOAB.Theyhadcontactwith therealityofthehospital,withthePC,andwerechallenged todesigntheidealroomforapatientwithnoprospectof healingandintheterminalphaseoflife.
After its approval as an official extension project of the UEMA, the Room of Dreams took three months to reachitsinitialobjectives,namely: (1)createan environ-mentofacceptanceandhumanizationforindividualswhose prospectsofcurenolongerexist,butaimtohavephysical, mental,socialandspiritualwellbeingintheirhospitalstay, inmanycasesthelastdaysbeforedeath;(2)entering stu-dentsinprojectsituationsinwhichtheycanexperiencethe dailylifeofahospitalastheIMOABandlinkitwithproject practice.
The students got to know the architecture of the PC facilities,otherwards,PainServiceandPCoftheLAD-MA. Then,theymeasuredandphotographedthethreewardsthat would bereformed.Through periodic meetingswiththeir advisor to review the works, the students developed the project,whichincludedlayoutfromfloortoceilingplansand atleastfourviewsanddetails,inadditiontospecifications ofmaterialsandquantitativeservices.
eventhoughhecouldnotstaylongstanding,andgrabbars toprevent falls. It is worth mentioning that the students receivedinstructiontodesigneverythingtheythoughtwas bestfortherooms----fromfloorandroomlightingtobeds.
The project presentation left everyone dazzled. The project coordinator presented the budget, which was approvedbythepresidentofthefoundation,whohasmade apubliccommitmenttomaketheRoomsofDreamsanew realityoftheinstitutionforpatientsintheterminalphase oflife.
Discussion
Palliativecareisstillayoungscience.In2012,only45years hadelapsedsincethefoundingofSt.Christopher’sHospice byCicelySaunders,afactconsideredthehallmarkofthePC. Ithasbeen25yearssincePCwasfirstrecognizedasa medi-calspecialtyintheUKand10yearssincetheWHOpublished amorecurrentdefinitionandnewrecommendations.3,6
Sinceitsbirth,PChasdevelopedanddisseminated world-wideatarapidandimpressivepace.6Somereasonsaregiven
for itsrapid growth, such asthe emergence of PC advo-cates, pain relief been considered asa human right, the aging population needs, and the desire toprovide better caretopatientsinthefinalstagesoflife.6
Despite itsimpressive growth,especiallyin developing countries,severalfactorscontributetomakethepalliative careactionslesseffective.Amongthesearetheexistence ofpoliciesforrestrictedtodelayedreleaseofopioids,lack ofskilledhuman resources,andshortageofinvestmentin thearea.4
TheWHOhighlightsthreekeymeasuresforthe develop-mentofPCwithapublichealthapproach:(1)agovernment policythatintegratestheservicesofPCinthestructureand financingofthenationalhealthcaresystem;(2)an educa-tionpolicythatconsolidatestrainingofhealthprofessionals andvolunteers;and(3)adrugpolicytoensurethesupply ofdrugsfortreatmentofpainandothersymptoms.7
Wewillnowdiscusstheseandother elementsreported in the literature as necessary for the establishment of a palliativecareserviceinBrazilanditsrelationtoourresults.
Humanization
A hospital suitable for a PC service needs to have the patientasthefocusofattention,notthedisease.The pur-poseofhumanizationistoeffectuatethecareforthesick humanbeingandpromotehis/herhealth,understoodasthe complete wellness.Therefore,humanization isconsidered indispensabletoaplacethatwantstoofferpalliativecare.2
Throughthephotocontest,wefoundawaytostrengthen the humanization at the IMOAB,causing the staff tostop their daily activities, take pictures of patients and show them inside and outside the hospital; Flashes of Life put the patients, their situation, and their feelings into focus.
ThecontestalsohighlightedthecommitmentofIMOAB’s Pain Service and PC to improve patients’ treatment and sensitized the hospital board, which allocated ward beds exclusivelytopatientsinPC.
Multidisciplinarity
Providing quality of life to a patient with no chance of healing is a complex task that requires interdisciplinary planning,withmultidisciplinarity.Othersciencehardlyhas astrongmultidisciplinary approachsuchasPC.2The work
team includes professionals, patients, relatives, and the generalpublic,dedicatedtoprovidecontinuingcarewithin mental(psychologist,psychotherapist,psychoanalyst, psy-chiatrist),social(socialworker,volunteer),spiritual(priest, pastor,rabbi,guru),biological(doctor,nurse, physiothera-pist,occupationaltherapist),andemotionalscope,bothfor patientsandtheirlovedones.8Besidestheseprofessionals,
dependingontheclinicalevolutionofthecase,other pro-fessionalsandspecialistsmaybecalledupontocooperate withtheteam.
Thispapershowsanothercategoryofprofessionalswho contribute to the pursuit of quality of life for patients beyondcure----thearchitects.Throughtheextensionproject, RoomofDreams, weaddthearchitecturein the develop-mentof PC. The resultsof this partnershipwere projects of welcoming and warm environments, with minimization of hospital elements, and as close as possible to the ideal place for someone to spend his/her last days of life.
ThePainServiceandPCpartnershipwiththearchitecture builtareproducibleprocessthathasmuchtoaddtothePC servicesinitsceaselessstruggletoprovidequalityoflifefor patients.
The contestFlashesLife alsohelped tostrengthenthe multidisciplinary, bringing together hospital staff toward a common goal----to see the cancer patient. The contest attractedinterest andpromoted contact between profes-sionalsfromdifferentfieldswiththegrowthofPCservicein thehospital.
Education
SpecializedtrainingandbasicknowledgeandskillsinPCare essentialforallhealthprofessionalswhodealwithpatients in the final stages of life, which makes education a cru-cialaspect for the establishment of suchcare.2 Oneway
toachieve progressin disseminatingthe practiceofPCin healthcareis toprepareand educatefutureprofessionals todealwiththeneedsofpatientsandrelativesfacing life-threateningillnesses.9
In2011,palliative medicinewasacceptedasapractice areabytheFederalCouncilofMedicine(FCM),with train-ing time of one year and the requirement of having the title,bythemedicalassociation, of specialistin anesthe-siology,oncology,internalmedicine,geriatrics,andfamily, communityorpediatricmedicine.10
This wasa breakthrough in PC service in the country. However,the teaching of PCis still poor in Brazil. There arefew collegesthatprovidesome informationaboutthe area,usuallyinelectivecourses.11 Thereisanurgentneed
toincludeeducationontheprinciplesofPCin undergradu-ate,aswellasgraduatehealthcarecourses,alsowithfew specializedcoursesinvariousregions.4
inhealthcarecourses.Itisimportanttofosterthecreation ofacademic leaguesat institutionsof highereducationin Brazil,particularlyinhealthcare courses,andoffer theo-reticalanddidacticsupport.9
The Academic Leagueof Pain of Maranhão(LAD-MA) is multidisciplinaryandincludesnursingandmedicalteachers whoworkat the PainService andPCof theIMOAB. Since its foundation, the league promotes courses open to the generalpubliconpainandPC. A UniversidadeFederal do Maranhão,towhichtheleagueisbound,hasPCteachingin thecurriculumofmedicalcourse.
TheLAD-MAplayedakeyroleinallthestepsofthePC implementationinthehospital,fromideationtothe promo-tionoftheworkstrategiesreportedhere.
OneofthechallengesforPCtraininginthecountryisthat therearefewspecializedcenters.4Theimplementationof
a PCservice in our hospital, in addition to all the bene-fitsinherenttoitscreation,willbeafieldpracticeforthe LAD-MAand,thus,contributetotheeducationoffuture pro-fessionalsinthecareofpatientsinfinalstagesoflife,and enableitsexpansiontoaLeagueofPainandPalliativeCare. Itisalsoworthmentioningthelearningofthe architec-ture studentsof UEMA with theRoom of Dreams project, whichshowstheclearrelationshipbetweenPCandsciences thatgobeyondhealthcare.
Drugsupply
Whenapatientisinthefinalstagesofanincurabledisease, intensive treatment of pain and other symptoms is often required topreserve his/herquality of life.12 Akey issue
fortheproperimplementationofPCinLatinAmericaisthe rapidandcontinuoussupplyofopioids.4
Inourcountry,thesupplyofanalgesicsforpaincontrol islimited,restrictedtoafewpharmaciesandnonexistent insomemunicipalities.11Theproperandrecommendeduse
ofopioidsbytheWHOisstillunknownanddiscriminatedby healthprofessionals.13 Inparallel,wealsoemphasizedthe
ideathatpeoplehaveregardingmorphine:thatitisaimed atpatientsinagony,mayhastendeath,andthatitsuseis alwaysassociatedwithaddiction.11,14
Recently,thefederalgovernmentlaunchedanordinance thatexpands the arsenal of analgesic and adjuvant drugs for chronic paintreatment and completes these parame-ters,despitesomelimitations,suchasthenumberofopioid drugs,whichremainsrestrictedtocodeine,morphine,and methadone.15
Ourexperiencehasshownthefeasibilityofimplementing ahospital-basedPCfromanalreadyestablishedpainservice andoutpatientPC,wherethedifficultiesregardingthe sup-plyofdrugswerealreadybeingaddressed.TheIMOABhasfor someyearsastructuredpharmacythatprovidesmedications to patients to control pain, nausea, vomiting, insomnia, constipation,amongothers.Thispreliminaryplanisofgreat importanceinthesedimentationofPCinahospital.
Governmentsupport
Oneofthebiggestobstaclesmentionedintheliterature2,6
forthe viabilityofPCprogramsindeveloping countriesis thelack ofgovernmentcommitmenttothePCphilosophy.
Inthesecountries,andBrazilisincluded,manyofthe diffi-cultiesinimplementingPCservicesderivefromtheabsence ofgovernmentalstrategiesandconsistentnationalpolicyfor painreliefgeneratedfromlisteningandextensive discuss-ionswiththesocietiesinvolvedwithpain.
The roleof governments is soimportant thatit deter-mines the way PC is developed in a particular country. Globally,twoscenarios ofPCdevelopmentare described: thebottom-upandtop-downapproaches.6
The bottom-upmodel ischaracterized by an energetic group of activists that identify a local need and initiate activities toimprove the scenario. Thatis howpalliative carestartedincountrieslikeZimbabweandMyanmar,where Maureen Butterfield and UHla Tun,respectively, founded the firstPCservicesin thesecountries aftercontactwith cancer patients, both because their daughters had the disease.6
ThetopdownmodeloccurswhentheMinistryofHealthis involvedintheearlystages,encouraging,legislating, creat-inganationalpolicyand,finally,incorporatingthePCtothe nationalhealth systemofthecountry.Thiswasthemodel adoptedbythePhilippines,Mongolia,andKazakhstan,and itisacentralfeatureoftheWHOprojectinAfrica.6
The implementation of a consistent and organized PC network is achallenging task.Despiteall thegovernment initiatives,PCimplementationintheBrazilianhealthsystem isslowanddisarticulated.4
Inourcountry,facedwithobstacles,acommonidentity for PCprofessionalswasbuilt----militantof the humaniza-tioncauseofdying.Itisnotedthattheexistenceofservices createdandmaintainedthankstotheeffortanddedication ofindividualsorgroupswhoworkhardasadvocatesofthe causeandfacegovernmentbureaucracytocreatepalliative care services.PC services in Brazil have their own pecu-liarcharacteristicsandemergedmostlyfrompainservices withinhospitals.4
The reported experiencefollows the national trend of creating PCservices frompain services. The Pain Service of IMOABslowlygainedground andimportancewithinthe hospital. With a pharmacy that provides medications for adequate analgesia of cancer patients and with the sup-portofthehospitalboard,afavorableenvironmentforthe developmentofPCwascreated.
Thisworkhasshownsomelocalinitiativesthatcan, sim-ilar to other services in our country, bypass the lack of nationalpoliciesintheareaandenabletheimplementation of a palliative care service. Reproducible tools that sedi-mentedtheimplementationofPCfromapainserviceina cancerhospitalwerereported.
TheInternationalObservatoryonEndofLifeCare(IOELC) statedthatitiswhenweaddthetop-downandbottom-up models,i.e., combine local energywitha national policy thatthemaximumrangeofcoverage,education,resources, supplyofdrugsandgrowthisachieved.6
Conclusion
Local initiatives regarding PC have great value in our country,makingthiskindofattentionaccessibleand demon-stratingitseffectivenesstosociety.However,itisnecessary that the federal government set a national health policy directedtoconsolidatePCinBrazil.
Conflicts
of
interest
Theauthorsdeclarenoconflictsofinterest.
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