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The 2015 Quality of Death Index Ranking palliative care across the world A report by The Economist Intelligence Unit
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1 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Contents
Acknowledgements 2
Executive summary 6
About the 2015 Quality of Death Index 9 Anoteondefinitions 10
Introduction 11
Part 1: The 2015 Quality of Death Index—Overall scores 14 Casestudy:Mongolia—Apersonalmission 19 Casestudy:China—Growingawareness 20
Part 2: Palliative and healthcare environment 22 Casestudy:Spain—Theimpactofanationalstrategy 28 Casestudy:SouthAfrica—Raisingthepalliativecareprofile 29
Part 3: Human resources 30 Casestudy:Panama—Palliativecareisprimarycare 34
Part 4: Affordability of care 35 Casestudy:US—Fillinginthegaps 38 Casestudy:UK—Dyingoutofhospital 39
Part 5: Quality of care 40 TheWorldHealthAssemblyresolution 42 Children’spalliativecare 44
Part 6: Community engagement 45 Palliativecareandtherighttodie 48 Casestudy:Taiwan—Leadingtheway 49
Part 7: The 2015 Quality of Death Index—Demand vs supply 51
Conclusion 54
Appendix I: Quality of Death Index FAQ 56
Appendix II: Quality of Death Index Methodology 60
Endnotes 66
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The 2015 Quality of Death Index Ranking palliative care across the world
TheQualityofDeathIndexwasdevisedandconstructedbyanEconomistIntelligenceUnit(EIU)researchteamledbyTrishaSuresh.EbunAbarshi,TaniaPastrana,MarcoPellereyandMayecorSarcontributedtoresearchinbuildingtheIndex.SarahMurraywastheauthorofthisreportandDavidLinewastheeditor.MarcoPellereywrotethecountrysummaryappendices.LauraEdigerprovidedadditionalresearch,reportingandwriting.JosephWyattassistedwithproductionandGaddiTamwasresponsibleforlayout.
Forhertimeandadvicethroughoutthisproject,wewouldliketoextendourspecialthankstoCynthiaGoh,chair,AsiaPacificHospicePalliativeCareNetwork.
FortheirsupportandguidanceinconstructionoftheIndexwewouldalsoliketothankStephenConnor,seniorfellowattheWorldwideHospicePalliativeCareAlliance,LilianadeLima,executivedirectoroftheInternationalAssociationforHospiceandPalliativeCare,EmmanuelLuyirika,executivedirectoroftheAfricanPalliativeCareAssociation,andSheilaPayne,emeritusprofessorattheInternationalObservatoryonEndofLifeCareatLancasterUniversity.
Inaddition,duringresearchfortheconstructionoftheIndexandinwritingthisreport,theEIU
interviewedpalliativecareexpertsfromacrosstheworld.Theirtimeandinsightsaregreatlyappreciated.TheEIUtakessoleresponsibilityfortheconstructionoftheIndexandthefindingsofthisreport.
Interviewees, listed alphabetically by country:
GracielaJacob,director,ArgentinianNationalCancerInstitute,Argentina
RobertoWenk,director,ProgramaArgentinodeMedicinaPaliativa-FundaciónFEMEBA,Argentina
AmandaBresnan,executivemanager,policy,programsandresearch,Alzheimer’sAustralia,Australia
LizCallaghan,chiefexecutiveofficer,PalliativeCareAustralia,Australia
TimLuckett,member,ManagingAdvisoryCommittee,ImprovingPalliativeCarethroughClinicalTrials,UniversityofTechnologySydney,Australia
YvonneMcMaster,advocate,PushforPalliative,Australia
MargaretO’Connor,professorofnursing,SwinburneUniversity,Australia
LeenaPelttari,chiefexecutiveofficer,HospiceAustria,Austria
HerbertWatzke,head,president,AustrianSocietyforPalliativeCare,Austria
RumanaDowla,chairperson,BangladeshPalliative&SupportiveCareFoundation,Bangladesh
PaulVandenBerghe,director,FederationPalliativeCareofFlanders,Belgium
JohanMenten,president,ResearchTaskForce,FederationPalliativeCareofFlanders,Belgium
Acknowledgements
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MariaGorettiMaciel,president,NationalAcademyofPalliativeCare,Brazil
IrenaJivkovaHadjiiska,member,BulgarianAssociationforPalliativeCare,Bulgaria
NikolayYordanov,head,PalliativeCareDepartment,InterregionalCancerHospital,Bulgaria
SharonBaxter,executivedirector,CanadianHospicePalliativeCareAssociation,Canada
AnnaTowers,associateprofessor,PalliativeCareDivision,McGillUniversity,Canada
MariaAlejandraPalma,chief,ContinuedandPalliativeCare,DepartmentInternMedicine,UniversityofChileClinicalHospital,UniversityofChile,Chile
MaríaMargaritaReyesD,executivedirector,ClínicaFamilia,Chile
CeciliaSepulveda,senioradviser,CancerControl,ChronicDiseasesPreventionandManagement,WorldHealthOrganization,Chile
ChengWenwu,director,DepartmentofPalliativeCare,FudanUniversityCancerHospital,Shanghai,China
LiWei,founder,SongtangHospice,Beijing,China
NingXiaohong,oncologist,PekingUnionMedicalCollegeHospital,China
ShiBaoxin,director,HospiceCareResearchCentre,TianjinMedicalUniversity,China
WangNaning,nurse,ChineseAssociationforLifeCare,China
JuanCarlosHernandez,president,PalliativeCareAssociationofColombia,Colombia
MartaLeón,chief,PainandPalliativeCareGroup,UniversidaddeLaSabana,Colombia
MaríaAuxiliadoraBrenesFernández,president,CajaCostarricensedeSeguroSocial,Costa Rica
MartinLoučka,director,CentreforPalliativeCare,Czech Republic
OndřejSláma,co-chair,LocalOrganisingCommittee,CzechSocietyforPalliativeMedicine,Czech Republic
Mai-BrittGuldin,postdoctoralresearcher,DepartmentofHealth,AarhusUniversity,Denmark
HelleTimm,director,KnowledgeCentreforRehabilitationandPalliativeCare,Denmark
ToveVejlgaard,consultant,SpecialistPalliativeCareTeam,Vejle,Denmark
GloriaCastillo,doctor,PalliativeCareUnit,SantoDomingo,Dominican Republic
XimenaPozo,coordinatorforpalliativecare,MinistryofPublicHealth,Ecuador
MohammadElShami,directorofpsychiatry,ChildrenCancerHospital57357,Egypt
YosephMamoAzmera,associatedirector,CareandTreatmentofHIV-Aids,UniversityofCaliforniaSanDiego-Ethiopia,Ethiopia
TiinaSurakka,presidentoftheboard,TheFinnishAssociationforPalliativeCare,Finland
EeroVuorinen,president,FinnishAssociationforPalliativeCare,Finland
RégisAubry,president,FrenchNationalObservatoryonEnd-of-LifeCare,France
AnnedelaTour,head,DepartmentofPalliativeCareandChronicPain,CentreHospitalierVDupouy,France
LukasRadbruch,director,DepartmentofPalliativeMedicine,UniversityofAachen,Germany
EdwinaAddo,director,ClinicalServices,OfficeofthePresident,InternationalPalliativeCareResourceCentre,Ghana
MawuliGyakobo,specialist,FamilyMedicineandPublicHealth,DodowaHealthResearchCentre,Ghana
EvaDuarte,director,PalliativeMedicineandSupportCareUnit,SanatorioNuestraSeñoradelPilar,Guatemala
LamWai-man,chairman,HongKongSocietyofPalliativeMedicine,Hong Kong
GáborBenyó,medicaldirector,TábithaHouse,Hungary
SushmaBhatnagar,headofanaesthesiology,painandpalliativeCare,AllIndiaInstituteofMedicalSciences’DrBRAmbedkarInstitute-RotaryCancerHospital,India
MohsenAsadi-Lari,director,OncopathologyResearchCentre,IranUniversityofMedicalSciences,Iran
MazinFaisalAl-Jadiry,doctor,OncologyUnit,ChildrenWelfareTeachingHospital,BaghdadUniversity,Iraq
NettaBentur,associateprofessor,StanleySteyerSchoolforHealthProfessionals,Tel-AvivUniversityandMyers-JDC-BrookdaleInstitute,Israel
AugustoCaraceni,director,VirgilioFlorianiHospiceandPalliativeCareUnit,NationalCancerInstituteofMilan,Italy
CarloPeruselli,president,ItalianSocietyofPalliativeCare,Italy
AdrianaTurriziani,director,HospiceVillaSperanza,Università’CattolicadelSacroCuore,Italy
NaokiIkegami,professoremeritus,KeioUniversity,Japan
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MohammadBushnaq,chairman,JordanPalliativeCareSociety,Jordan
ZipporahAli,executivedirector,KenyaHospicesandPalliativeCareAssociation,Kenya
LucyFinch,co-founder,NdiMoyoHospice,Malawi
RichardLim,chairman,MalaysianHospiceCouncil,Malaysia
CelinaCastañeda,programmecoordinator,PalliativeCarefortheMexicanSocialSecurityInstitute,Mexico
OdontuyaDavaasuren,president,MongolianPalliativeCareSociety,Mongolia
MatiNejmi,coordinator,CenterofPainandPalliativeCare,HôpitalCheikhKhalifaBinZaid,Morocco
WimJ.A.vandenHeuvel,professor,UniversityMedicalCentre,UniversityofGroningen,Netherlands
BregjeOnwuteaka-Philipsen,programmeleader,QualityofCare,InstituteforHealthandCareResearch,Netherlands
KateGrundy,palliativemedicinephysician,ChristchurchHospital,New Zealand
OlaitanSoyannwo,president,SocietyfortheStudyofPain,Nigeria
RosaBuitrago,vicedeanandprofessor,SchoolofPharmacy,UniversityofPanama,Panama
GasparDaCosta,nationalcoordinator,NationalPalliativeCareProgrammeofPanama,Panama
MaryBerenguel,chief,DepartmentofPalliativeMedicineandPainManagement,Oncosalud-AUNA,Peru
MariaFidelisManalo,head,PalliativeCareUnit,CancerCenter,TheMedicalCity,Philippines
WojceechLeppert,chair,DepartmentofPalliativeMedicine,PoznanUniversityofMedicalSciences,Poland
JoséAntónioFerrazGonçalves,medicaldirector,palliativecareunit,PortugueseInstituteofOncology,Portugal
JennyOlivo,president,PuertoRicoHospiceandPalliativeCareAssociation,Puerto Rico
GeorgiyNovikov,chairman,RussianPalliativeCareAcademy,Russia
AlexanderTkachenko,founder,St.PetersburgPediatricPalliativeCareHospital,Russia
VanessaYung,chiefexecutive,SingaporeHospiceCouncil,Singapore
KristinaKrizanova,headdoctor,DepartmentofPalliativeMedicine,NationalOncologyInstitute,Slovakia
LizGwyther,chiefexecutiveofficer,HospiceandPalliativeCareAssociationofSouthAfrica,South Africa
JoanMarston,chiefexecutive,InternationalChildren’sPalliativeCareNetwork,South Africa
YoonjungChang,chief,Hospice&PalliativecareBranch,NationalCancerCenter,South Korea
MariaNabal,head,SupportivePalliativeCareTeam,HospitalUniversitarioArnaudeVilanova,Spain
JavierRocafortGil,formerpresident,SpanishAssociationforPalliativeCare,Spain
NishiraniLankaJayasuriya-Dissanayake,nationalprofessionalofficer,NoncommunicableDiseases,WorldHealthOrganization,Sri Lanka
AjanthaWickremasuriya,chairperson,ShanthaSevanaHospice,Sri Lanka
BertilAxelsson,DepartmentofRadiationSciences,UnitofClinicalResearchCentre,UmeåUniversity,Sweden
PeterStrang,consultant,professor,DepartmentofOncology-Pathology,KarolinskaInstitutet,Sweden
SteffenEychmüller,doctor,CenterofPalliativeCare,BernUniversityHospital,Switzerland
AndreasUllrich,seniormedicalofficer,CancerControl,DepartmentofChronicDiseasesandHealthPromotion,WorldHealthOrganization,Switzerland
Co-ShiChantalChao,professor,MedicalCollege,NationalChengKungUniversity,Taiwan
Ching-YuChen,professoremeritus,NationalTaiwanUniversityHospital,Taiwan
RongchiChen,chairman,LotusHospiceCareFoundation,Taiwan
SharleneCheng,founder,TaiwanResearchNetworkCouncil,TaiwanAcademyofHospicePalliativeMedicine,Taiwan
Sheau-FengHwang,chief,HospicePalliativeCareCenter,TaichungVeteransGeneralHospital,Taiwan
SiewTzuhTang,professor,ChangGungUniversitySchoolofNursing,TaiwanUniversityHospital,Taiwan
YingweiWang,director,HeartLotusHospiceatTzuchiGeneralHospital,Taiwan
EliasJohansenMuganyizi,executivedirector,TanzanianPalliativeCareAssociation,Tanzania
SriviengPairojkul,president,ThaiPalliativeCareSociety,Thailand
KadriyeKahveci,anaesthetist,DepartmentofPalliativeCareCenter,UlusStateHospital,Turkey
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EllyKatabira,professorofmedicine,MakerereUniversityCollegeofHealthSciences,Uganda
SimonChapman,director,Policy,Intelligence&PublicAffairs,NationalCouncilforPalliativeCare,UK
RichardHarding,director,AfricanProgrammes,CicelySaundersInternational,UK
DavidPraill,formerchiefexecutive,HospiceUK,UK
KatherineSleeman,clinicallecturerinpalliativemedicine,King’sCollegeLondon,UK
MarkSteedman,manager,PhDProgramme,End-of-LifeCareForum,InstituteofGlobalHealthInnovation,ImperialCollegeLondon,UK
RosTaylor,nationaldirector,HospiceCareatHospiceUK,UK
ViktoriiaTymoshevska,director,PublicHealthProgramInitiative,InternationalRenaissanceFoundation,Ukraine
EduardoGarcíaYanneo,chairman,LatinAmericanAssociationforPalliativeCare,Uruguay
IraByock,executivedirectorandchiefmedicalofficer,InstituteforHumanCaring,ProvidenceHealth&Services,US
DavidCasarett,directorofhospiceandpalliativecare,UniversityofPennsylvaniaHealthSystem,US
BarbaraCoombsLee,president,Compassion&Choices,US
MarkLazenby,assistantprofessorofnursing,YaleSchoolofNursing,US
DianeMeier,director,CentretoAdvancePalliativeCare,US
JamesTulsky,chair,DepartmentofPsychosocialOncologyandPalliativeCare,Dana-FarberCancerInstitute,US
HollyYang,assistantdirector,InternationalPalliativeMedicineFellowshipProgram,InstituteofPalliativeMedicine,SanDiegoHospice,US
PatriciaBonilla,programmedirector,NationalCancerInstitute,Venezuela,Venezuela
QuachThanhKhanh,head,PalliativeCareDepartment,HoChiMinhCityOncologyHospital,Vietnam
NjekwaLumbwe,nationalcoordinator,PalliativeCareAllianceofZambia,Zambia
EuniceGaranganga,director,HospiceandPalliativeCareAssociation,Zimbabwe
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Executive summary
Everyonehopesforagooddeath,orrather,“agoodlifetotheveryend”1,butuntilrecentlytherewaslittlededicatedeffortandinvestmenttoprovidetheresourcesandeducationthatwouldmakethatpossible.Publicengagementandpolicyinterventionstoimprovethequalityofdeaththroughtheprovisionofhigh-qualitypalliativecarehavegainedmomentuminrecentyears,andsomecountrieshavemadegreatstridesinimprovingaffordableaccesstopalliativecare.TheEconomistIntelligenceUnit’sQualityofDeathIndex,commissionedbytheLienFoundation,highlightsthoseadvancesaswellastheremainingchallengesandgapsinpolicyandinfrastructure.
ThisisthesecondeditionoftheIndex,updatingandexpandinguponthefirstiteration,whichwaspublishedin2010.Thenewandexpanded2015Indexevaluates80countriesusing20quantitativeandqualitativeindicatorsacrossfivecategories:thepalliativeandhealthcareenvironment,humanresources,theaffordabilityofcare,thequalityofcareandthelevelofcommunityengagement.TobuildtheIndextheEIUusedofficialdataandexistingresearchforeachcountry,andalsointerviewedpalliativecareexpertsfromaroundtheworld.
Inmanycountries,theproportionofolderpeopleinthepopulationisgrowingandnon-
communicablediseasessuchasheartdiseaseandcancerareontherise.Theneedforpalliativecareisalsothereforesettorisesignificantly.Insupplementaryanalysiswecompareexpectedgrowthinthe“demand”forpalliativecaretotheexisting“supply”foreachcountry(asshownintheirIndexrankings).Thedemandanalysisisbasedonforecastsoftheburdenofdisease,old-agedependencyratio,andrateofpopulationageingoverthenext15years.
Despitetheimprovementsthisresearchreveals,muchmoreremainstobedone.Eventop-rankednationscurrentlystruggletoprovideadequatepalliativecareservicesforeverycitizen.Culturalshiftsareneededaswell,fromamindsetthatprioritisescurativetreatmentstoonewhichvaluespalliativecareapproachesthatregarddyingasanormalprocess,andwhichseekstoenhancequalityoflifefordyingpatientsandtheirfamilies.
Keyfindingsofourresearchinclude:
l The UK has the best quality of death, and rich nations tend to rank highest.Asin2010theUKranksfirstinthe2015QualityofDeathIndex,thankstocomprehensivenationalpolicies,theextensiveintegrationofpalliativecareintoitsNationalHealthService,andastronghospicemovement.Italsoearnsthe
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The 2015 Quality of Death Index Ranking palliative care across the world
topscoreinqualityofcare.Ingeneral,incomelevelsareastrongindicatoroftheavailabilityandqualityofpalliativecare,withwealthycountriesclusteredatthetopoftheIndex.AustraliaandNewZealandcomesecondandthirdoverall,andfourothercomparativelyrichAsia-Pacificcountriesachieverankingsinthetop20:Taiwanatpositionsix,joinedbySingaporeat12,Japanat14,andSouthKoreaat18.Otherwise,Europeancountriesdominatethetop20,withtheadditionoftheUSandCanadaatpositions9and11,respectively.
l Countries with a high quality of death share several characteristics.Theleadingcountrieshavethefollowingelementsinplace:
• Astrongandeffectivelyimplementednationalpalliativecarepolicyframework;
• Highlevelsofpublicspendingonhealthcareservices;
• Extensivepalliativecaretrainingresourcesforgeneralandspecialisedmedicalworkers;
• Generoussubsidiestoreducethefinancialburdenofpalliativecareonpatients;
• Wideavailabilityofopioidanalgesics;
• Strongpublicawarenessofpalliativecare.
l Less wealthy countries can still improve standards of palliative care rapidly.Althoughmanydevelopingcountriesarestillunabletoprovidebasicpainmanagementduetolimitationsinstaffandbasicinfrastructure,somecountrieswithlowerincomelevelsprovetobeexceptions,demonstratingthepowerofinnovationandindividualinitiative.Forexample,Panamaisbuildingpalliativecareintoitsprimarycareservices,Mongoliahasseenrapidgrowthinhospicefacilitiesandteachingprogrammes,andUgandahasmadehugeadvancesintheavailabilityofopioids.
l National policies are vital for extending access to palliative care.Manyofthetopcountrieshavecomprehensivepolicy
frameworksthatintegratepalliativecareintotheirhealthcaresystems,whetherthroughanationalhealthinsuranceschemeliketheUKorTaiwan,orthroughcancercontrolprogrammessuchasinMongoliaandJapan.Effectivepoliciescancreatetangibleresults:thelaunchofSpain’snationalstrategy,forexample,ledtoa50%increaseinpalliativecareteamsandunifiedregionalapproaches.
l Training for all doctors and nurses is essential for meeting growing demand.Inhigh-rankingcountriessuchastheUKandGermanypalliativecareexpertiseisarequiredcomponentofbothgeneralandspecialisedmedicalqualifications,whileseveraltop-scoringcountrieshaveestablishednationalaccreditationsystems.Countrieswithoutsufficienttrainingresourcesexperienceasevereshortageofspecialists,whilegeneralmedicalstaffmayalsolackthetrainingtouseopioidanalgesicsappropriately.
l Subsidies for palliative care services are necessary to make treatment affordable. Whetherthroughnationalinsuranceorpensionschemesorthroughcharitablefunding(suchasintheUK),withoutfinancialsupportmanypatientsareunabletoaccessadequatecare.Thetopscorersintermsofaffordabilityofcare—Australia,Belgium,Denmark,Ireland,andtheUK—cover80to100%ofpatientcostsforpalliativecare.
l Quality of care depends on access to opioid analgesics and psychological support. Inonly33ofthe80countriesintheindexareopioidpainkillersfreelyavailableandaccessible.Inmanycountriesaccesstoopioidsisstillhamperedbyredtapeandlegalrestrictions,lackoftrainingandawareness,andsocialstigma.Thebestcarealsoincludesinter-disciplinaryteamsthatalsoprovidepsychologicalandspiritualsupportandphysicianswhoinvolvepatientsindecision-makingandaccommodatetheircarechoices.
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l Community efforts are important for raising awareness and encouraging conversations about death.TheDyingMattersCoalitionsetupintheUKbytheNationalCouncilforPalliativeCare,aglobalmovementofinformalmeetingscalledDeathCafés,andtheUS-basedConversationProjectencouragepeopletoopenlydiscusstheirend-of-lifewishesandnormalisetheconversationaboutdying.Useoftelevision,newspapersandsocialmediabygovernmentandnon-profitgroupsinmanycountries—forinstanceBrazil,Greece,andTaiwan—hasalsohelpedtomakeheadwayinmainstreamingawarenessofpalliativecare.
l Palliative care needs investment but offers savings in healthcare costs.Shiftingfromstrictlycurativehealthinterventionstomoreholisticmanagementofpainandsymptomscanreducetheburdenonhealthcaresystemsandlimituseofcostlybutfutiletreatments.Recentresearchhasdemonstratedastatisticallysignificantlinkinuseofpalliativecareandtreatmentcostsavings,afactseveralhigh-rankingcountrieshaverecognisedintheirbidstoexpandpalliativecareservices.
l Demand for palliative care will grow rapidly in some countries that are ill-equipped to meet it.CountrieslikeChina,GreeceandHungarywithlimitedsupplyandrapidlyincreasingdemandwillneedactiveinvestmenttomeetpublicneeds.Moregenerally,
demographicshiftstoanolderpopulation,combinedwiththerisingincidenceofnon-communicablediseaseslikediabetes,dementiaandcancer,willcreateadditionalpressureforcountriesthatalreadystruggletomeetdemand.
TheEIU’s2010Indexsparkedaseriesofpolicydebatesovertheprovisionofpalliativecarearoundtheworld.Sincethen,severalcountrieshavemadesignificantadvancesintermsofnationalpolicy.Colombia,Denmark,Ecuador,Finland,Italy,Japan,Panama,Portugal,Russia,Singapore,Spain,SriLanka,SwedenandUruguayhaveallestablishedneworsignificantlyupdatedguidelines,lawsornationalprogrammes,andcountriessuchasBrazil,CostaRica,TanzaniaandThailandareintheprocessofdevelopingtheirownnationalframeworks.Themomentumbeinggainedonpalliativecareatapolicylevelhasalsobeenstrengthenedbytheinternationalresolutionatthe2014WorldHealthAssemblycallingfortheintegrationofpalliativecareintonationalhealthcaresystems.
Eachcountrywillneedtocraftitsownuniqueapproachbyidentifyingthemostsignificantgaps,addressingregulatoryandresourceconstraints,andformingpartnershipsbetweengovernment,academia,andnonprofitgroups.Approacheswillvarybycontextandculture,butsharetheoverallobjectiveofenablingabetterqualityoflifeforpatientsfacingdeath.
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l Qualityofcare(30%weighting,6indicators)
l Communityengagement(10%weighting,2indicators)
Eachindicatorisallocatedaweightinginitscategory,andeachcategoryisgivenaweightingintheoverallIndex.Parts1to6ofthispaperconsiderinturntheoverallresultsandscoresforeachofthefivecategories.
Thisyear,theEIUalsopreparedasupplementaryassessmentoftheneedforpalliativecareprovision,toenableassessmentofthe“demand”forsuchcarealongsidethequalityof“supply”revealedinthemainIndex.Thisisbasedonthreecategories:
l Theburdenofdiseasesforwhichpalliativecareisnecessary(60%weighting)
l Theold-agedependencyratio(20%)
l Thespeedofageingofthepopulationfrom2015-2030(20%)
TheresultsofthisanalysisarediscussedinPart7.
AmoredetailedexplanationofthemethodologybehindtheIndexandthedemandscorecalculation,andalistoffrequentlyaskedquestionsabouttheconstruction,compositionandlimitationsoftheresearch,areincludedasappendicestothispaper.
In2010,theEIUdevelopedanIndexthatrankedtheavailability,affordabilityandqualityofend-of-lifecarein40countries.TheIndex,whichwascommissionedbytheLienFoundation,aSingaporeanphilanthropicorganisation,consistedof24indicatorsinfourcategories.Thestudygarneredmuchattentionandsparkedaseriesofpolicydebatesovertheprovisionofpalliativeandend-of-lifecarearoundtheworld.Asaresult,theLienFoundationcommissionedanewversionoftheIndextoexpanditsscopeandtakeintoaccountglobaldevelopmentsinpalliativecareinrecentyears.
Inthis,the2015version,thenumberofcountriesincludedhasbeenincreasedfrom40to80.TheIndex,whichfocusesonthequalityandavailabilityofpalliativecaretoadults,isalsostructureddifferentlyfromthe2010version(meaningthedirectcomparisonofscoresbetweenyearsisnotpossible).Now,theIndexiscomposedofscoresin20quantitativeandqualitativeindicatorsacrossfivecategories.Thecategoriesare:
l Palliativeandhealthcareenvironment(20%weighting,4indicators)
l Humanresources(20%weighting,5indicators)
l Affordabilityofcare(20%weighting,3indicators)
About the 2015 Quality of Death Index
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The 2015 Quality of Death Index Ranking palliative care across the world
TheQualityofDeathIndexmeasuresthequalityofpalliativecareavailabletoadultsin80countries.Althoughtheterms“palliativecare”and“endoflifecare”aresometimesusedinterchangeably,thelatterisoftentakentomeancaredeliveredonlyinthefinalstagesofaterminalillness.TheIndexisdesignedtomeasurepalliativecareasdefinedbytheWorldHealthOrganization:
“Palliativecareisanapproachthatimprovesthequalityoflifeofpatientsandtheirfamiliesfacingtheproblemsassociatedwithlife-threateningillness,throughthepreventionandreliefofsufferingbymeansofearlyidentificationandimpeccableassessmentandtreatmentofpainandotherproblems,physical,psychosocialandspiritual.Palliativecare:
• providesrelieffrompainandotherdistressingsymptoms;
• affirmslifeandregardsdyingasanormalprocess;
• intendsneithertohastenorpostponedeath;
• integratesthepsychologicalandspiritualaspectsofpatientcare;
• offersasupportsystemtohelppatientsliveasactivelyaspossibleuntildeath;
• offersasupportsystemtohelpthefamilycopeduringthepatientsillnessandintheirownbereavement;
• usesateamapproachtoaddresstheneedsofpatientsandtheirfamilies,includingbereavementcounselling,ifindicated;
• willenhancequalityoflife,andmayalsopositivelyinfluencethecourseofillness;
• isapplicableearlyinthecourseofillness,inconjunctionwithothertherapiesthatareintendedtoprolonglife,suchaschemotherapyorradiationtherapy,andincludesthoseinvestigationsneededtobetterunderstandandmanagedistressingclinicalcomplications.”2
A note on definitions
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Introduction
Asgovernmentsacrosstheworldworktoimprovelifefortheircitizens,theymustalsoconsiderhowtohelpthemdiewell.Itisachallengenottobeunderestimated.Inmanycountries,olderpeoplemakeupanever-growingproportionofthepopulation.Meanwhile,theprevalenceofnon-communicablediseases,suchasheartdisease,diabetes,dementiaandcancer,isincreasingrapidly.Takentogether,thismeansthattheneedforpalliativecareissettorisesharply.
“We’veseenunprecedentedchangesinthewaytheworldpopulationismoving,withmorepeopleovertheageof65thanundertheageoffive,”saysStephenConnor,seniorfellowattheWorldwideHospicePalliativeCareAlliance(WHPCA).“That’sneverhappenedinhumanhistorybeforeandit’sgoingtocontinuetogetmorepronounced.”
Yetmanycountriesremainwoefullyill-equippedtoprovideappropriateservicestothesecitizens.Despiteimprovementsinrecentyearsandgreaterattentiontotheissue,just34countrieshaveabove-average3scoresinthe2015QualityofDeathIndex.Togethertheseaccountforjust15%ofthetotaladultpopulationofthecountriesintheIndex(whichthemselvesaccountfor85%oftheglobaladultpopulation)4,meaningthevastmajorityofadultslackaccesstogood
palliativecare.(Givenbetterpalliativecareisgenerallyavailableinrichercountrieswitholderpopulations,thisrisesto27%ofthepopulationaged65orover.TheIndexcovers91%oftheglobalpopulationofthoseagedover65.5)Separately,theWHPCAestimatesthatgloballyunder10%ofthosewhorequirepalliativecareactuallyreceiveit.6
EventhosecountriesthatdowellintheQualityofDeathIndexcannotmeetalltheneedsofthoserequiringpalliativecare,withevidenceofshortfallscontinuingtoemergeinnationsthat—inrelativeterms—havehighlysophisticatedservices.
TaketheUK,whichtopstheoverallIndex.InMay2015,aninvestigationbytheParliamentaryandHealthServiceOmbudsmanintocomplaintsaboutend-of-lifecarehighlighted12casesitsaidillustratedproblemsitsawregularlyinitscasework.7Failingsincludedpoorsymptomcontrol,poorcommunicationandplanning,notrespondingtotheneedsofthedying,inadequateout-of-hoursservicesanddelaysindiagnosisandreferralsfortreatment.
ThefactthattheUK,anacknowledgedleaderinpalliativecare,isstillnotprovidingadequateservicesforeverycitizenunderlinesthechallengefacingallcountries.Becausewhile
Thebiggestproblemthatpersistsisthatourhealthcaresystemsaredesignedtoprovideacutecarewhenwhatweneedischroniccare.That’sstillthecasealmosteverywhereintheworld.
Stephen Connor, senior fellow, Worldwide Hospice Palliative Care Alliance
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The 2015 Quality of Death Index Ranking palliative care across the world
greaternumbersofpeoplearelivinglonger,theyarenotnecessarilydoingsoingoodhealth.Oftentheymayhaveseveralillnesses,makingtheprocessofdyingmoredrawn-outanddemandingincreasinglycomplexformsoftreatment.
Thisplacesaheavyburdenonhealthcaresystems,mostofwhicharestrugglingtoadapt—andoneofthehardestshiftstomakeiscultural.“Thebiggestproblemthatpersistsisthatourhealthcaresystemsaredesignedtoprovideacutecarewhenwhatweneedischroniccare,”saysDrConnor.“That’sstillthecasealmosteverywhereintheworld.”
ThisisalsotrueintheUS,anothercountrythatperformswellintheIndex.“Ourhealthsystemsfocusondiagnosingandtreatingdiseasesandaredemonstrablynegligentinmeetingtheneedsofpatientsandfamiliesgoingthroughthesedifficultexperiences,”saysIraByock,executivedirectorandchiefmedicalofficeroftheInstituteforHumanCaringatProvidenceHealth&Servicesandauthorofthebook,The Best Care Possible.
Theironyisthatascountriesstruggletocopewithrisinghealthcarecosts,palliativecarecouldbeamorecost-effectivewayofmanagingtheneedsofanageingpopulation.Onerecentliteraturereviewfoundthatpalliativecarewasfrequentlyfoundtobecheaperthanalternativeformsofcareandthat,inmostcases,thecostdifferencewasstatisticallysignificant.8Anotherrecentstudyfoundthattheearlierpalliativecarewasadministeredtopatientswithanadvancedcancerdiagnosis,thegreaterthepotentialcostsavings.Ifpalliativecaretreatmentwasintroducedwithintwodaysofdiagnosisthisledtosavingsof24%comparedwithnointervention;itsintroductionwithinsixdayssaved14%.9
Yet,despiteevidenceofitseconomicbenefits,atinyproportionofhealthcareresearchgoesintoresearchonpalliativecare(about0.2%ofthefundsawardedforcancerresearchintheUKin2010,forexample,andjust1%oftheUSNationalCancerInstitute’stotal2010appropriation10).
“Akeyfactorlimitingresearchisthatit’sreallypoorlyfunded,”saysKatherineSleeman,clinicallecturerinpalliativemedicineatKing’sCollegeLondon.“Thisissomethingthatarguablywillaffecteverysinglepersonandyetweinvestalmostnothingintryingtoworkouthowtodoitbetter.”
Moreworrying,manydevelopingcountriesareunabletoofferbasicpainmanagement,leavingmillionsofpeopledyinganagonisingdeath.
Nevertheless,evidenceofinnovationiscomingfromunexpectedquarters.MongoliaandPanama(inpositions28and31respectivelyintheIndex),areshowingthatevenlesswealthycountriescanincreasetheavailabilityandqualityofcare,relativelyquickly.
Andwhenitcomestotheavailabilityofmorphine,Ugandahasmadestrikingadvancesinpaincontrolthroughapublic-privatepartnershipbetweenthehealthministryandHospiceAfricaUganda,apioneeringinstitutionfoundedbyAnneMerriman—anomineeforthe2014NobelPeacePrize.“Thegovernmentnowsupportstheavailabilityoforalmorphinetoanyonewhoneedsitforfree,”explainsEmmanuelLuyirika,executivedirectoroftheAfricanPalliativeCareAssociation.
Somedevelopingcountriescanmoveforwardrelativelyrapidlybecauseoftheabsenceofentrenchedsystems,saysMarkSteedman,PhDprogrammemanagerfortheEnd-of-LifeCareForumatImperialCollegeLondon’sInstituteofGlobalHealthInnovation.“Wethinkthereareplaceswherethere’salotofpotential,”hesays.“Whenyou’restartingfromzeroyoucanleapfrogalotoftheproblems.”
RichardHarding,whodevelopedtheAfricanprogrammeforCicelySaundersInternational(anNGOfocusedonresearchonandeducationaboutpalliativecare)atKing’sCollegeLondon,seesthisprincipleatworkinAfrica.“Africancountrieshavesucceededindeliveringhighqualityeffectivepalliativecareinthefaceoflow
Thisissomethingthatarguablywillaffecteverysinglepersonandyetweinvestalmostnothingintryingtoworkouthowtodoitbetter.
Katherine Sleeman, clinical lecturer in palliative medicine, King’s College London
13 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
resourcesandoverwhelmingneed,”hesays.“Andhigh-andmiddle-incomecountrieswouldbewisetolearnlessonsfromthem.”
Whenlookingmorebroadly,SheilaPayne,emeritusprofessorattheInternationalObservatoryonEndofLifeCareatLancasterUniversity,seesprogressbeingmade.“There’sageneraltrendinwhichwe’removingfromthepioneerstageinmanycountriestopeopleseeinghowtheycanembedpalliativecareinhealthcaresystems,”shesays.“That’sreallyimportantbecausethat’saboutsustainability.”
Inamajorstepforward,theWorldHealthAssembly—WHA,theforumthroughwhichtheWorldHealthOrganizationisgoverned—lastyearpublishedaresolutiononpalliativecarecallingonmemberstatestointegrateitintonationalhealthcaresystems(seetheboxinPart5).“Thatsetsthepolicycontextandlegitimisesgovernmentsgettingengaged,”saysDrPayne.“Inthepolicycontext,that’sabigdevelopment.”
Inaddition,initsglobalactionplanforthepreventionandcontrolofnon-communicablediseasesfor2013–2020,theWHOhasincludedpalliativecareamongthepolicyareasproposedtomemberstates.TheWHOisalsoshiftingitsfocustoplacemoreattentiononnon-communicablediseases.
ThequestionthatliesaheadishowquicklyandeffectivelymemberstatescanputinplacemeasuresthatcanmeettherecommendationsoftheWHAresolutionandincreaseaccesstoopioidsandpalliativecare.Andwhiledevelopingcountriesneedtoscaleuppromisingpioneerprogrammes,countriesthatalreadyhavesophisticatedpalliativecareprovisionneedtofindwaystomeetthegrowingdemandsofarapidlyageingpopulation.
However,somearguethat,evenwithoutlargeinvestments,significantimprovementscanbemadeinpalliativecare.“Thethingsthatmakeabetterdeatharesosimple,”saysRosTaylor,nationaldirectorforhospicecareatHospiceUK.“It’sbasicknowledgeaboutgoodpaincontrolandconversationswithpeopleaboutthethingsthatmatter—thatcouldtransformmanymoredeaths.”
Forpolicymakers,majorissuestoconsiderareavailabilityofcare,humanresourcesandtraining,affordabilityofcare,qualityofcareandcommunityengagementthroughpublicawarenesscampaignsandsupportvolunteers.Theseissuesarecoveredbythefivecategoriesinthe2015QualityofDeathIndex.Ineach,theIndexlooksathowcountriesmeasureupagainstothernations,aswellasagainsttheirregionalpeersandthosewithsimilarincomelevels.
14 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
The 2015 Quality of Death Index—overall scores1
Inassessingtheresultsofthe2015QualityofDeathIndex,itisnosurprisetofindthatwealthycountriesdominatethetopofthelist,whiletheirpoorercounterpartsareclusteredtogetherinitslowersections.Infact,incomelevelsareastrongindicatoroftheavailabilityandqualityofpalliativecare.However,thereareexceptionstothisrule,ofteninplaceswhereanindividualischampioningthecauseorwherecertaincircumstances—thespreadofHIV-Aids
insomeAfrican,countries,forexample—havebeencatalystsforinnovationandinvestment.
Aswasthecasein2010,theUKtopstheIndex,followedbyAustraliaandNewZealand(whichtooksecondandthirdin2010).TheUK’sleadingpositionreflectstheattentionpaidtopalliativecareinbothpublicandnon-profitsectors.Withastronghospicemovement—muchofitsupportedbycharitablefunding—palliative
2015 Quality of Death Index—Overall scores
Figure 1.1
0 20 40 60 80 100
15 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
2015 Quality of Death Index—Overall scores
Figure 1.2
Rank Country
IraqBangladeshPhilippines
NigeriaMyanmar
Dominican RepublicGuatemala
IranBotswana
ChinaEthiopiaUkraine
ColombiaIndia
MalawiSri LankaRomania
KenyaBulgaria
ZambiaSaudi Arabia
ZimbabweVietnam
GreeceEgypt
SlovakiaTanzania
IndonesiaMorocco
GhanaKazakhstan
PeruRussiaTurkey
Puerto RicoVenezuela
ThailandMexico
BrazilHungaryEcuadorUruguayMalaysia
JordanCuba
UgandaSouth Africa
Czech RepublicArgentina
PanamaLithuania
Costa RicaMongolia
ChilePoland
IsraelPortugal
SpainHong Kong
ItalyFinland
DenmarkSouth Korea
AustriaSweden
SwitzerlandJapan
NorwaySingapore
CanadaFrance
USNetherlands
GermanyTaiwan
BelgiumIreland
New ZealandAustralia
UK
12.514.115.316.917.117.2
20.921.222.823.325.125.526.726.827.027.128.330.030.130.330.831.331.932.932.933.233.433.633.834.334.836.037.238.240.040.140.242.342.542.744.046.146.546.746.847.848.551.852.553.654.057.357.758.658.759.860.863.466.6
71.173.373.573.774.875.476.176.377.477.677.879.480.880.982.083.184.585.887.6
91.693.9
8079787776757473727170696867666564636261605958
=56=56
55545352515049484746454443424140393837363534333231302928272625242322212019181716151413121110
987654321
andend-oflifecarearebothpartofanationalstrategythatisleadingtomoreservicesbeingprovidedinNationalHealthServicehospitals,asthecountryworkstointegratehospicecaremoredeeplyintothehealthcaresystem.11 “Peoplehavewokenuptothefactthatwemaybeabletosavemoneyoverallforsocietybyinvestingindyingbetter,”saysDrSleeman.
WhileAustraliaandNewZealandareinthetopthree,fourotherAsia-Pacificcountriesmakeitintothetop20,withTaiwanatpositionsix,Singaporeatposition12,Japanatposition14andSouthKoreaatposition18.Forthesecountries,governmentengagementhasbeencrucial.Amongotherfactors,Taiwanbenefitsfromthecountry’sNationalHealthInsurance,whichdeterminesinsurancecoverageandthelevelofreimbursementforspecificservices.12 Japan(whichperformedrelativelypoorlyinthe2010Index,atposition23of40)isinstitutinganewcancercontrolprogramme,whichisexpectedtopromptanincreasedfocusonpalliativecarefromtheearlystagesofthediseasealongwiththeincorporationofpalliativecarecentresintothenationalbudget.13
AndinSingapore,whichisgrapplingwitharapidlyageingpopulation,caringforpeopletowardstheendoftheirliveshasrisenuptheagendaforhealthcarepolicymakers.SingaporerecentlydevelopedanationalpalliativecarestrategyandtheMinistryofHealthisworkingbothtoincreasethenumberofservicesavailableandtoempowerindividualstomaketheirowndecisionsonend-of-lifecare.14
However,whiletheEuropean,Asia-PacificandNorthAmericancountriesinthetopoftheIndexbenefitfromrelativelyhighlevelsofgovernmentsupport,severallesswealthycountrieswithlesswelldevelopedhealthcaresystemsstandout.TheseincludeChile,Mongolia,CostaRicaandLithuania,whichappearinthetop30,atpositions27,28,29and30respectively.
16 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
2015 Quality of Death Index—Ranking by region
Figure 1.3
Country
IraqNigeria
IranBotswana
EthiopiaMalawiKenya
ZambiaSaudi Arabia
ZimbabweEgypt
TanzaniaMorocco
GhanaJordan
UgandaSouth Africa
IsraelUkraine
RomaniaBulgaria
GreeceSlovakia
KazakhstanRussiaTurkey
HungaryCzech Republic
LithuaniaPoland
PortugalSpainItaly
FinlandDenmark
AustriaSweden
SwitzerlandNorwayFrance
NetherlandsGermanyBelgiumIreland
UKBangladeshPhilippines
MyanmarChinaIndia
Sri LankaVietnam
IndonesiaThailandMalaysia
MongoliaHong Kong
South KoreaJapan
SingaporeTaiwan
New ZealandAustralia
Dominican RepublicGuatemala
ColombiaPeru
Puerto RicoVenezuela
MexicoBrazil
EcuadorUruguay
CubaArgentina
PanamaCosta Rica
ChileCanada
US
12.516.9
21.222.825.127.030.030.330.831.332.933.433.834.3
46.747.848.5
59.825.528.330.132.933.234.837.238.2
42.751.854.0
58.760.863.4
71.173.373.574.875.476.177.479.480.982.084.585.8
93.914.115.317.1
23.326.827.1
31.933.6
40.246.5
57.766.6
73.776.377.6
83.187.6
91.617.2
20.926.7
36.040.040.142.342.544.046.146.8
52.553.6
57.358.6
77.880.8
Amer
icas
Asia
-Pac
ific
Euro
peM
iddl
e Ea
st &
Afr
ica
Mongoliaisanimpressivecase.ThedrivingforcebehindtheincreaseinpalliativecareinthecountryisOdontuyaDavaasuren,adoctorwhoishelpingtobuildanationalpalliativecareprogramme,pushingtochangeprescriptionregulationstomakegenericopioidsavailable,trainingpalliativecarespecialists,andworkingtoincludeeducationonpalliativecareinthecurriculafordoctors,nursesandsocialworkers.“She’sabrilliantteacher,leaderandvisionary,”saystheWHPCA’sDrConnor.“Andleadershipiscriticaltoanychangeprocessinanywhereintheworld.”
Bycontrast,somecountriesthatmightbeexpectedtoperformmorestrongly,giventheirrapidrecenteconomicgrowth,rankatlowpositionsintheIndex.IndiaandChinaperformpoorlyoverall,atpositions67and71intheIndex.Inthelightofthesizeoftheirpopulations,thisisworrying.
InChina’scase,arapidlyageingdemographicpresentsadditionalchallenges.TheadoptionofpalliativecareinChinahasbeenslow,withacurativeapproachdominatinghealthcarestrategies.Thismaybeabouttochange,asrecentshiftsinpolicy,mainlyatthemunicipallevel,indicategreatergovernmentsupportandinvestmentinhospiceandpalliativecareservices.
RegionalvariationsarepresentintheIndex,andtherearesurpriseshere,too.IntheAmericas,theUSandCanadatopthelist,asmightbeexpected.ButChileisinthirdplace,makingitaleaderinLatinAmerica—withthehighestnumberofpalliativecareservicesintheregion.15Chile’spositionintheIndexreflectstheeffortsmadetoincorporatepalliativecareintohealthcareservicesandtodeveloppoliciesforaccesstoopioidssincethecountrylauncheditspalliativecareprogrammein1996.16,17
17 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Correlation with per-capita GDP(2013, US$, ppp)
Figure 1.4
Quality of Death overall score (100=best)
Income per capita (US$, PPP, 2013)
R2 = 0.652
0
20
40
60
80
100
0 10000 20000 30000 40000 50000 60000 70000 80000 90000
Singapore
US
NorwaySwitzerland
Hong Kong
Saudi Arabia
UKAustralia
IrelandNew Zealand Belgium
Taiwan
France
Germany
NetherlandsCanadaJapanSouth Korea
Italy
Sweden
AustriaDenmark
Finland
SpainIsrael
PortugalPolandChile
LithuaniaCzech Republic
Puerto Rico
Mongolia
Costa Rica
South Africa
Jordan
Ecuador
PeruEgypt Bulgaria
Romania
IranBotswana
China
ColombiaSri Lanka
UkraineEthiopiaMalawi India
ZimbabweTanzania
Ghana
Vietnam
Indonesia
Bangladesh
PhilippinesMyanmar
NigeriaGuatemala
Iraq
Dominican Republic
Cuba
UgandaPanamaArgentina
Malaysia
HungaryMexicoVenezuela
Turkey
ThailandBrazil
RussiaKazakhstan
Greece
Slovakia
UruguayMorocco
Zambia
Kenya
Incomelevelscorrelatequitestronglywithrelativesuccessindeliveringpalliativecareservices(asFigure1.4demonstrates).Thetop10countriesintheIndexareallhigh-incomecountries,althoughwithinthehighincomegroup,somecountriesexperiencingeconomicdifficulties—suchasGreece(equal56thplace)andRussia(48th)—canbefoundamongthepoorerperformingnations(Figure1.5).
Withinregionsasimilarprincipleapplies.Israel(ahighincomecountry)andSouthAfrica(amiddle-incomecountry)earnthefirstandsecondhighestscoresamongthe18MiddleEasternandAfricancountries.Meanwhile,fourofthelastfivecountriesintheIndex—Myanmar,Nigeria,thePhilippinesandBangladesh—arelow-income
countries.However,somecountriesdonotperformaswellasonemightexpect,giventheirwealth.ThisisthecaseforSingapore,forexample,whichdoesnotmakeitintothetop10,andHongKong,whichisonlyatposition22intheIndex.
InthecaseofSingapore,thegovernmentisworkingtocatchupfollowingyearswhenitinvestedrelativelylittleinpalliativecare.“Singaporehasoneofthefastestageingpopulationsintheworldbutuntilabout25yearsago,wehadayoungpopulation,”saysCynthiaGoh,chairoftheAsiaPacificHospicePalliativeCareNetwork.“Sowebuiltupaprettygoodacutecaresystem,butwhenitcomestochronicdiseasesandendoflife,thereisalotofcatchinguptodo.”
18 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
2015 Quality of Death Index—Ranking by income group
Figure 1.5
Country
BangladeshPhilippines
NigeriaMyanmar
GuatemalaEthiopiaUkraine
IndiaMalawi
Sri LankaKenya
ZambiaZimbabwe
VietnamEgypt
TanzaniaIndonesia
MoroccoGhana
UgandaMongolia
IraqDominican Republic
IranBotswana
ChinaColombiaRomaniaBulgaria
KazakhstanPeru
TurkeyVenezuela
ThailandMexico
BrazilHungaryEcuador
MalaysiaJordan
CubaSouth Africa
ArgentinaPanama
Costa RicaSaudi Arabia
GreeceSlovakia
RussiaPuerto Rico
UruguayCzech Republic
LithuaniaChile
PolandIsrael
PortugalSpain
Hong KongItaly
FinlandDenmark
South KoreaAustriaSweden
SwitzerlandJapan
NorwaySingapore
CanadaFrance
USNetherlands
GermanyTaiwan
BelgiumIreland
New ZealandAustralia
UK
14.115.316.917.1
20.925.125.526.827.027.130.030.331.331.932.933.433.633.834.3
47.857.7
12.517.2
21.222.823.3
26.728.330.1
34.836.038.240.140.242.342.542.744.046.546.746.848.5
52.553.6
57.330.832.933.2
37.240.0
46.151.854.0
58.658.759.860.863.466.6
71.173.373.573.774.875.476.176.377.477.677.879.480.880.982.083.184.585.887.6
91.693.9
Hig
h in
com
eM
iddl
e in
com
eLo
w in
com
e
Note: Low income countries are those that had 2013 GNI per capita of less than US$4,125; middle income countries more than US$4,125 but less than US$12,746; and high income countries more than US$12,746.
ThediscrepanciesthatemergebetweenincomeandIndexperformanceandthepresenceofoutlierssuchasMongoliaareinthemselvesenlightening.Theyservetodemonstratethattherearenosimpleanswersforcountrieswhenitcomestoprovidingthecarethatissoessentialfortheirageinganddyingcitizens.
Acomplexrangeoffactors—economic,social,culturalandpolitical—needtobetakenintoaccountbeforepalliativecarecanbedeliveredeffectively.Byfactoringineverythingfromcertificationsforspecialistpalliativecareworkerstotheavailabilityofopioidanalgesics,thefollowingfivecategoriesthattogetherconstitutetheIndexprovideinsightsintowhysomecountriesaresucceedingwhileothersarefailing.
19 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Whenin2000theMongolianPalliativeCareSociety(MPCS)wasestablished,itmarkedthestartofeffortstofillagapingholeinpalliativecareservices.Untilthen,thecountryhadnohospicesorpalliativecareteachingprogrammes,itusedjust1kgofmorphineeachyear,andnogovernmentpolicyonpalliativecareexisted.18
“Wedidnotevenhavetheterminologyforpalliativecare,”explainsOdontuyaDavaasuren,thedrivingforcebehindthecreationofpalliativecareservicesinMongolia.
Itwasin2000,afterattendingaconferenceinStockholmoftheEuropeanAssociationforPalliativeCare,thatDrDavaasurendecidedtotakeaction.OnreturningtoMongolia,shemadevisitstopatientswithherpostgraduatestudentsandrecordedtheconversationswithfamilies.“Isawsomuchsufferinginfamilies—notjustphysicalbutalsopsychologicalandeconomic,”shesays.
FundingfromtheFordFoundationandtheOpenSocietyFoundationshelpedDrDavaasureninhereffortstobuild
awarenessamongthepublic,healthprofessionalsandpolicymakers,todevelopspecialisedtraininginpalliativecare,andtoincreaseaccesstopainkillingdrugs.
However,DrDavaasurenadmitsthattheworkhasnotalwaysbeeneasy,particularlyaswhenshestartedneitherthepublicorhealthministryofficialswereawareoftheexistenceofpalliativecareservices.“Noonetalkedaboutit,”shesays.“Andpolicymakersareveryconservative,soitwasverydifficulttochangethelawsandregulations.”
Whilemuchworkremainstobedonetoaccommodateeveryoneinneedofcare,asaresultofDrDavaasuren’seffortsthesituationtodayisvastlyimproved.Ulaanbaatar,thecapital,nowhastenpalliativecareservices(withthelargestfacilityatthecountry’sNationalCancerCenter).Outsidethecity,provincialhospitalsnowaccommodatepatientsinneedofpalliativecare.
PalliativecareisalsonowincludedinMongolia’shealthandsocialwelfarelegislationanditsnationalcancercontrolprogram.Since2005,allmedicalschoolsandsocialworkersreceivepalliativecaretraining.And,since2006,affordablemorphinehasbeenavailable.19In2013,DrDavaasurensays,thecountrystartednon-cancerpalliativecareprovisions,outpatientconsultationandnursing,homecare,andspiritualandsocialservices.
AllthisisreflectedintheIndex,inwhichMongoliamakesitintothetop30intheoverallranking(atposition28)aswellasinthreeoftheIndex’scategories(palliativeandhealthcareenvironment,humanresourcesandcommunityengagement).Itranksfirstamongitspeersinthe“lowincome”bracket—aroundtenpointsaheadofthesecond-rankedcountryinthisgroup,Uganda.PlottingIndexscoresagainstper-capitaincome(seeFigure1.4)revealsthatMongoliaoverachievesbysomemargingivenitsresources.
Thenextchallenge,DrDavaasurensays,istoexpandtheprovisionofnon-cancerandpaediatricpalliativecareserviceswhilealsoincreasingtheavailabilityofhomecareandservicesforthoselivingintheprovinces.
ForDrDavaasuren,theabilityforthoseinpainandwithincurablediseasestoreceivepalliativecareisnotjustacaseofexpandingservicestomeetrisingneed—itisaboutmeetingabasichumanright.
Case study: Mongolia—A personal mission
Rank/80 Score/100
Quality of Death overall score (supply) 28 57.7
Palliative and healthcare environment 24 51.3
Human resources 21 61.1
Affordability of care =36 65.0
Quality of care =32 60.0
Community engagement =27 42.5
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
Mongolia
Average
Highest
0
20
40
60
80
100
20 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
TheadoptionofapalliativecareapproachinChinahasbeenslow,withmosthealthcareresourcesfocusedoncurativetreatment.AlthoughthenationalMinistryofHealthofficiallyendorsedtheestablishmentofpalliativecaredepartmentsinhospitalsin2008,20publicawarenessofandaccesstopalliativecareisstilllimited.OutsideofChina’s400specialisedcancerhospitals,thereareonlyahandfulofcharityhospitalsandcommunityhealthcentresthatofferpalliativecareservicestopatients.
China’soverallrankof71stoutof80countriesreflectsthislimitedavailabilityandthepoorqualityofpalliativecareingeneral.Serviceaccessibilitystandsatlessthan1%withmosthospicesconcentratedintheurbanareasofShanghai,BeijingandChengdu;thereisnonationalstrategyorguidelines;useandavailabilityofopioidsislimited;andpatient-doctorcommunicationispoor.21Inaddition,ifcareisnotcoveredbycharitabledonationsthefinancialburdenonpatientscanbequitehigh.AswithmostmedicaltreatmentsinChina,publicsubsidiesdonotfullycoverthecostandpatientcontributionsarerequired.
Arecentshiftingovernmentpolicy,mainlyatthemunicipallevel,signalsatrendofgreatersupportandinvestmentinhospicecareservices.CitieslikeShanghai,ShenzhenandTianjinhavesetnewtargetsandpoliciestoincreaseaccess
topalliativecare.Shanghaiplannedtoadd1,000bedsforhospicepatientsbytheendof2014,someinhospitalsandsomeincommunity-basedhealthcarecentres,22andTianjinrecentlyaddedhospicecaretotheofficiallistofgovernment-fundedsocialservices.23
ShiBaoxin,directoroftheHospiceCareResearchCenteratTianjinMedicalUniversity,saysthatdespiteimprovedawarenessandexpansionofpalliativecareinChinaoverthepast20years,it’sstillearlydays.“It’shardforhospicecaretodevelopmainlybecauseofthelackofeducationaboutdeath,”DrShisays,addingthatthisalsomakeseffectivepsychologicaltreatmentofdyingpatientsmorechallenging.
Thislackofawarenessextendstomedicalprofessionals.NingXiaohong,anoncologistatPekingUnionMedicalCollegeHospital,saysthatteachingofpalliativecareconceptsinmedicaltrainingisextremelylimited,whichmeansthatmostpracticingprofessionalshaveneverbeenexposedtoessentialconceptsortechniques.Inresponse,DrNingisdevelopinganonlinecourseonpalliativecaretobeusedonanannualbasis.
ChengWenwu,directoroftheDepartmentofPalliativeCareatFudanUniversityCancerHospital,agreesthatthelackofprofessionalknowledgeandlowpublicawarenessmeanthatbothpatientsanddoctorsfocusoncurativetreatments,anddon’tthinkaboutpalliativecareoptions.However,publicawarenessisgraduallyincreasing,spreadviaTVandnewspapersandalsowordofmouth.DrNingreportsanincreaseinthelastfewyears,andsaysshenowseessomepatientsathercliniccominginwithquestionsaboutpalliativecareoptions.
Withoutgovernmentsubsidies,financialcostsareamajorchallenge,aspalliativecareisgenerallynotsupportedthroughthenationalhealthsecuritysystem.SongtangHospiceinBeijingwasoneoftheearliestpalliativecareinstitutions,foundedin1987,andcurrentlycaresforaround320patients.Whilethecostsofcarearerelativelylow,onaverageRMB1,000-2,000(US$160-320)permonth,patientsstillstruggletoaffordit,saysLiWei,thehospital’sfounder.
Inadditiontofinancialbarriers,culturalbeliefsalsohinderthewidespreaduseofpalliativecare.AccordingtoDrLi,most
Case study: China—Growing awareness
Rank/80 Score/100
Quality of Death overall score (supply) 71 23.3
Palliative and healthcare environment 69 21.1
Human resources 70 21.0
Affordability of care =65 37.5
Quality of care 69 16.3
Community engagement =45 25.0
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
China
Average
Highest
0
20
40
60
80
100
Thebiggestchallengeistochangepeople’sminds,toletthemknowthatsocietycantakegoodcareoftheirparentsinthelatestagesofillnessandhelpthemdiewithdignity.
Li Wei, founder, Songtang Hospice, Beijing
21 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Chinesestillfollowthetraditionof“raisingchildrentocareforyouinoldage,”andmanyfamiliesfeelthattooutsourcecareofrelatives,evenintheirfinaldays,isunfilial.
“Thebiggestchallengeistochangepeople’sminds,toletthemknowthatsocietycantakegoodcareoftheirparentsinthelatestagesofillnessandhelpthemdiewithdignity,”DrLisays.Theimpactoftheone-childpolicy,oftenleavingindividualscaringfortwoparentsandfourgrandparents,willleadtoevenmoredemandforoutsideresourcestoprovidesupport.
ThemostinnovativeaspectsofprovidingpalliativecareinChinaarenottechnical,butcultural.AccordingtoDrShi,“WefollowtheWesternideasforhospicetreatment,butour
mainimprovementistoapplyChinesetraditionalculturetopsychologicalcounseling,forexamplewedoresearchtounderstandhowpeopleofdifferentclassesandagesthinkofdeath,tofigureouthowtohelpthempsychologically.”
Meanwhile,SongtangHospicehasworkedwithmanyvolunteerswhoprovidepsychologicalandemotionalsupporttopatients,intheprocesseducatingcommunitymembersaboutpalliativecare.Publicawarenessisalsogrowingthroughscatteredsocialmediaefforts,suchasanonlinecampaignon”ChoiceandDignity”foundedbythechildrenofseniorCommunistPartymembers,whichencouragesvisitorstosignlivingwills.24
22 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Palliative and healthcare environment2
Giventheavalancheofdemandheadingtowardsgovernmentsaroundtheworld,animportantindicatorofcountries’successindeliveringpalliativecareistheextenttowhichservicesareavailable—whetherinhospices,hospitals,carehomesorpeople’sownhomes.Toassessthis,theIndexusesarangeofindicators,includinganation’soverallspendingonhealthcare,thepresenceandstrengthofgovernmentpoliciesonpalliativecare,theavailabilityofresearch-basedpolicyevaluationandthecapacitytodeliverpalliativecareservices.25
Inthiscategory,inwhichtheUKtopsthelist,sixofthetop10countriesareEuropean,alongwithAustralia,Taiwan,theUSandNewZealand.Regionally,somesurprisesemerge.AmongAsia-Pacificcountries,itisnotablethatVietnamandMongoliamakeitintothetop10.AndintheAmericas,whileasexpectedtheUSandCanadatopthelist,Chileisinfourthplace.This,saysEduardoYanneo,chairmanoftheMontevideo-basedLatinAmericanAssociationforPalliativeCare,is“becauseithasoneoftheoldestnationalprogrammesintheregion,withgovernmentsupportsincethebeginning.”
Notallhigh-incomecountriesperformwellintheIndex.HongKongisrelativelylowintheoverallrankingofthiscategory,atposition28—lowerthanPanama(atposition25),amiddle-incomecountry,andMongolia(atposition24),alow-incomecountry.HongKongscoresrelativelypoorlyintermsofoverallhealthcarespending,theavailabilityofresearch-based
policyevaluationanditscapacitytodeliverpalliativecareservices.
Nationalpoliciesplayavitalroleinextendingaccesstopalliativecare.Asaresult,thepresenceandeffectivenessofgovernmentpoliciesreceivesa50%weightinginthiscategory(andbecausethiscategoryisgivena20%weightingintheoverallIndex,thisindicatorrepresents10%oftheentireQualityofDeathscore).
Whilechangesinmethodologyandscopemeandirectcomparisonswiththe2010Indexarenotpossible,severalcountrieshavemadepolicyadvancesthatarereflectedinahigherrankinginthe2015Index.Singaporewasatposition18in2010—roughlymidwaydownthe40-countrylist—andisnowatposition12outof80countries,havingdevelopedanationalpalliativecarestrategythatwasacceptedin2012andisnowbeingimplemented.
India,whichwasatthebottomofthelistinthe2010Index,isataslightlyhigherpositionin2015—at51—reflectingastrongerindicationofgovernmentcommitment.WhilethebudgetallocationforIndia’s2012NationalProgramforPalliativeCarewaswithdrawn,elementsofthestrategyremainsinplaceand,asaresult,someteachingprogrammesareemergingacrossthecountry.Moreover,recentlegislativechangeshavemadeiteasierfordoctorstoprescribemorphineinIndia.
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The 2015 Quality of Death Index Ranking palliative care across the world
Meanwhile,Japan—whichonlyjustmadeitintothetophalfofthe2010Index—isat14inthe80-country2015listing.VariousinitiativeshavestrengthenedpalliativecareservicesinJapan,suchasthe2012BasicPlantoPromoteCancerControlPrograms,whichincludesprovisionofholisticcaretocoverpatients’andfamilies’painanddistressfromdiagnosisonward,andthelaunchthatyearofaCareforLife-threateningIllnessesprogrammeofpalliativecareeducationforpaediatricians.
Inaddition,tocitesomeotherexamples(notallofwhichwereincludedinthe2010Index),Colombia,Denmark,Ecuador,Finland,Italy,Panama,Portugal,Russia,Spain,SriLanka,SwedenandUruguayhaveallestablishedneworsignificantlyupdatedguidelines,lawsornationalprogrammesinrecentyears,andcountriessuchasBrazil,CostaRica,TanzaniaandThailandareintheprocessofdevelopingtheirownnationalframeworks.
Forthemostpart,thecountriesscoringhighlyintheoverallIndexarealsothosethathavethemosteffectivenationalpalliativecarestrategies.Mongolia—wherepalliativecareisincludedinthecountry’shealthandsocialwelfarelegislationanditsnationalcancercontrolprogramme26—doesfarbetterthanmaybeexpecteddueinparttoitsstrengthinthisindicator.
Otherexamplesoftheimportanceofnationalplanninginimprovingpalliativecareprovisionarecommonplace.InColombia,alawsignedintoeffectin2014givespatientswithterminal,chronic,degenerativeandirreversibleconditionstherighttopalliativecareservices“throughanintegratedtreatmentofpainandotherphysical,emotional,socialandspiritualsymptoms”.Underthelaw,thehealthsystemandthegovernmentareobligedtoofferpalliativecareservicesthroughoutthecountry,toeducatehealthprofessionalsandtoensureopioidsareavailableatanytime.27“It’searly
Palliative and healthcare environment category (20% weighting)
Figure 2.1
Rank Country
IraqEgypt
Dominican RepublicPhilippines
RomaniaGuatemala
BulgariaMyanmarEthiopia
BangladeshKazakhstan
ChinaSaudi Arabia
BotswanaNigeria
MoroccoSlovakia
IranColombia
UkraineCzech Republic
ArgentinaGreece
HungaryZimbabweLithuaniaIndonesiaSri LankaThailand
IndiaTanzania
PeruGhanaKenyaTurkey
VietnamUgandaMexico
MalaysiaEcuador
RussiaVenezuela
ZambiaMalawi
BrazilJordan
CubaPortugal
South AfricaPoland
Puerto RicoUruguay
Hong KongSweden
DenmarkPanama
MongoliaChile
Costa RicaIsrael
South KoreaItaly
CanadaFinlandFranceSpainJapan
SwitzerlandSingapore
GermanyBelgiumNorway
New ZealandAustria
USTaiwanIreland
AustraliaNetherlands
UK
4.15.56.18.59.610.312.614.516.819.019.921.121.221.521.822.222.522.522.723.724.525.826.727.628.130.130.931.032.032.133.133.233.433.634.734.937.037.037.137.337.437.737.838.038.039.339.741.441.742.244.644.8
50.450.550.551.251.351.952.153.555.556.757.558.460.961.262.264.866.467.669.471.0
76.777.878.979.681.784.184.885.2
80797877767574737271706968676665
=63=63
626160595857565554535251504948474645
=43=43
4241403938
=36=36
3534333231302928
=26=26
25242322212019181716151413121110
987654321
24 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Figure 2.2: Presence and effectiveness of government-led national palliative care strategy5 4 3 2 1
Thereisacomprehensivestrategyforthedevelopmentandpromotionofnationalpalliativecare.Ithasaclearvision,clearlydefinedtargets,anactionplanandstrongmechanismsinplacetoachievetargets.Infederal-structurecountries,therearestrongandclearlydefinedstrategiesthatindividualstatesmustfollow.Thesemechanismsandmilestonesareregularlyreviewedandupdated.
Thereisawell-defined,government-ledstrategyforthedevelopmentandpromotionofnationalpalliativecare.Ithasaclearvisionandspecificmilestones.Therearemechanismsinplaceandguidelinesonimplementation.Itismostlywellimplemented,eveninfederal-structurecountries.
Thereisagovernment-ledstrategyforthedevelopmentandpromotionofnationalpalliativecare.Thishasabroadvision,andlooselydefinedmilestones(nospecifictargets).Therearelimitedmechanismsinplacethataimtoachievemilestones.Infederal-structurecountries,statesarenotmandatedtofollowthenationalstrategy;i.e.itisonlyprescriptiveinnature
Thereisagovernment-ledstrategyforthedevelopmentandpromotionofnationalpalliativecare.However,itismerelyastatementofbroadintent.Itdoesnotcontainaclearvisionorspecificmilestonestoachieve.Therearenoclearmechanismsinplacetoachievethestrategy.
Thereisnogovernment-ledstrategyforthedevelopmentandpromotionofnationalpalliativecare.
Australia Singapore Austria Japan Brazil Portugal Argentina Iran Bulgaria Guatemala
Ireland Taiwan Belgium Mongolia Canada PuertoRico Bangladesh Kazakhstan Dominican Iraq
Netherlands UK Chile Norway CostaRica Russia Botswana Lithuania Republic Philippines
NewZealand Finland Panama Cuba SouthAfrica China Morocco Egypt Romania
France SouthKorea Denmark SriLanka Colombia Myanmar
Germany Spain Ecuador Sweden Czech Nigeria
HongKong Switzerland Ghana Tanzania Republic SaudiArabia
Israel US India Thailand Ethiopia Slovakia
Italy Indonesia Turkey Greece Ukraine
Jordan Uganda Hungary
Kenya Uruguay
Malawi Venezuela
Malaysia Vietnam
Mexico Zambia
Peru Zimbabwe
Poland
days,”saysDrPayne.“Buttherearethingshappeningtherethatshowgreatpromise.”
InSpain,itwasthe2007launchofanationalstrategythatledtoanincreaseof50%inthenumberofpalliativecareteamsandunifiedregionalapproachestopalliativecare,accordingtoJavierRocafortGil,formerpresidentoftheSpanishAssociationforPalliativeCare.28
Therelationshipbetweenhealthcarespendingandavailabilityofpalliativecareismorecomplex.(Inthiscategory,governmentspendingonhealthcare—whichisusedasaproxyforpalliative
carespending,forwhichcomparabledataarenotalwaysavailable—isgivena20%weighting,sorepresents4%oftheoverallIndex;Figure2.3.)Forexample,whiletheUSisattopofthelistwhenitcomestohealthcarespending(equivalentto17.9%ofGDPin2012),itisonlyatposition6inthiscategoryoftheIndex.AndwhiletheUKtopsthelistinthiscategory,itfallstoposition17lookingathealthcarespendingalone(9.4%ofGDP).
Singaporeisanevenmoredramaticoutlier,sinceitsCentralProvidentFund—acomprehensivesocialsecuritysystembasedon
25 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
asavingsplanthatiscompulsoryforallworkingresidents—coversalargeproportionofnationalhealthcarecosts,withindividualspayingforhealthcareoutoftheirfund.However,inrecentyears,fallingbirthratesandsmallerfamilyunitshavemeantthat,whenitcomestocaringfortheelderlyanddying,thetraditionalsystemofcarebyrelativeshasbrokendown.Asaresult,Singaporehashadtoraiseitshealthcarespending.Thegovernmenthasincreasedhealthcarecoveragefortheelderlywhilethenationalhealthcareinsuranceprogrammehasbeenenhanced,dramaticallyimprovingaffordability.
Thediscrepanciesreflectdifferencesinthewaypalliativecareisdeliveredaroundtheworld.Forwhilegovernmentsareresponsibleinsomeplaces,avarietyoforganisations,fromphilanthropicgroupstoreligiousinstitutions,extendthereachofthoseservicesinmanycountries.
Correlation with spending on healthcare (% of GDP, 2012)
Figure 2.3
Quality of Death overall score (100=best)
Healthcare spending (% of GDP, 2012)
R2 = 0.463
ZimbabweSri Lanka
Saudi ArabiaIndonesia
Malaysia
ThailandVenezuela
PeruGhana
Kazakhstan
Egypt
IndiaEthiopia
MyanmarBangladesh
IraqPhilippines
Dominican Republic
NigeriaGuatemala
UkraineMalawi
Zambia
Vietnam
MoroccoRussiaPuerto RicoTurkey
Brazil
SlovakiaTanzania
Israel
ChileLithuania Czech Republic Argentina
Cuba
Costa Rica
SpainPortugal
Singapore
TaiwanIreland
AustraliaUK
New Zealand
South Korea
Italy
Norway
Sweden DenmarkAustria
SwitzerlandNetherlandsFranceGermany
Belgium
USJapan
Finland
Panama
PolandMongolia
Greece
Ecuador
Hong Kong
Mexico
Bulgaria
ColombiaChina
RomaniaKenya
Botswana Iran
0
20
40
60
80
100
0 2 4 6 8 10 12 14 16 18 20
South AfricaJordanUruguay
Uganda
Hungary
Canada
TheUS,forexample,hasahighlevelofspendingonpalliativecarethroughthegovernment-fundedreimbursementforhospicecarethroughMedicare,thefederalprogrammeprovidinghealthinsurancecoveragetoallindividualsovertheageof65.
IntheUK,thehospicemovement,whichdeliversmuchofthecountry’spalliativecare,isfundedlargelythroughcharitabledonations.InSingapore,too,thecharitablesectorwasbehindthehospicemovement.“Agroupofvolunteersidentifiedagapintheservices,anditwasagapthegovernmentatthetimewasn’tpreparedtoworkon,”explainsDrGoh.However,shesays,whilethevoluntarysectorcontinuestoruntheservices,thegovernmentnowfundsthem,providingapproximately30-60%oftheirfinancialrequirements.
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The 2015 Quality of Death Index Ranking palliative care across the world
Capacity to deliver palliative care* (%)
Figure 2.4
Rank Country
EthiopiaNigeria
MoroccoEgypt
VietnamVenezuelaIndonesiaMyanmarSri Lanka
IranBangladesh
Dominican RepublicIraq
BrazilPeru
GhanaChina
ThailandMexico
ColombiaIndia
Saudi ArabiaTurkey
CubaEcuador
KazakhstanPanamaUkraine
GuatemalaTanzania
MalawiRussia
ZambiaBotswanaZimbabwe
UgandaKenya
JordanPhilippines
PortugalCzech Republic
GreeceSlovakia
ArgentinaRomania
ChileSouth Korea
MongoliaBulgaria
South AfricaHong Kong
IsraelFinland
JapanHungary
ItalyUruguayMalaysia
FranceDenmark
SingaporePoland
SwitzerlandPuerto Rico
LithuaniaSpain
SwedenNew Zealand
TaiwanBelgium
GermanyIrelandCanada
Costa RicaNorway
NetherlandsAustralia
UKUS
Austria
000.10.10.10.10.10.10.10.10.10.20.30.30.30.30.30.40.40.40.40.50.50.50.60.70.80.91.01.01.01.31.81.82.02.02.52.62.82.93.1
4.24.34.34.44.55.65.65.76.27.08.310.211.012.312.5
15.416.416.817.519.6
22.923.024.024.325.5
30.932.5
39.039.339.740.240.842.342.642.844.2
46.652.0
63.6
=79=79=70=70=70=70=70=70=70=70=70
69=64=64=64=64=64=60=60=60=60=57=57=57
56555453
=50=50=50
49=47=47=45=45
444342414039
=37=37
3635
=33=33
3231302928272625242322212019181716151413121110
987654321
Similarly,ofthelargenetworkofhospicesinSouthAfrica,mostarenon-governmentalorganisations,withchurchesalsoprovidingservices.SouthAfricahasdevelopedahighlyintegratedmodelofpalliativecarethroughitshospicemovement,saysDrHarding.“Theirhospicesdon’tjustfocusonend-of-lifecare,”hesays.“TheyareoutinthecommunityprovidingTBcontrol,familyeducation,diagnosis,infectioncontrolandgoingintoclinicstoprovidebasicHIVcare.”
Yetevenincountriesthathaverobustpoliciesandfundingforpalliativecare,gapsinprovisionexist—gapsthatmayincreasewiththeriseintheproportionofoldercitizensinthecomingyears.
InAustralia,whichrankssecondintheoverallIndexandthirdinthepalliativeandhealthcareenvironmentcategory,responsibilityforhealthcareisdevolvedtothestates,whichcanleadtoinconsistencyincaredelivery.
“Thereisn’tanequitablespreadoffundingacrossthecountry,”saysLizCallaghan,chiefexecutiveofPalliativeCareAustralia(PCA).“You’dhopeitwouldbebasedonwhatthepopulationneeds.Everyonetalksaboutit,butthat’sveryfaraway.Insomestatesfundingforpalliativecareisextremelylowsothemultidisciplinaryteammightbejustadoctorandanurse.”
Butwhileincreasedgovernmentfundingforhealthcaremightseemtobetheanswer,thismaynotalwaysbethecase.IntheUS,tighterscrutinyofhealthcarespendingbybothgovernmentandprivateinsurerscouldactuallybeaforcedrivingincreaseduseofpalliativecare,asitbecomesclearthatpalliativecareisacost-effectivealternativetohospitaladmissions.
Aspartofthis,healthsystems’andhospitals’reimbursementsareincreasinglybeingtiedtoqualitymeasures,includingwhetherpatientsarereadmittedwithin30days.InPennsylvania,
*Thisisaproxyindicatortomeasurethepercentageofpeoplewhodiedinacountryinoneyearthatwouldhavebeabletoreceivepalliativecare,giventhecountry’sexistingresources.Somecountriespublishstatisticsonthenumberofdeathsthatusedpalliativecare,butdataisnotuniformlyavailableforall80countriesintheIndex.Asanapproximation,weuseanestimationofthecapacityofpalliativecareservicesavailable(i.e.ofspecialisedprovidersofpalliativecare,includingthosethatadmitpatientsandprovideservicesathomeandinfacilities)basedonWHPCAdata,anddividebythenumberofdeathsinagivenyear.
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The 2015 Quality of Death Index Ranking palliative care across the world
forexample,Medicaid—thefederallyfundedhealthcareprogrammeforlow-incomeAmericans—doesnotreimbursehealthcareprovidersforall30-dayreadmissions.
“IfwetakecareofaMedicaidpatientandtheycomeback,thecostofthesecondreadmissionisonus,”saysDavidCasarett,directorofhospiceandpalliativecareattheUniversityofPennsylvaniaHealthSystem.“Sotheattentionto30-dayreadmissionsisstartingtodrivealotofinterestinpalliativecare.”
Thepreferenceofmanypeopletodieathomeisanotherreasonhospiceinfrastructureneedstobebalancedwiththeavailabilityofoutpatientpalliativecare.Andascountriesarefacedwithrapidlyageingpopulationsandhealthcareresourcesbecomemoretightlystretched,moreandmorepalliativecarewillneedtotakeplaceoutsideformalhospiceorhospitalsettings.
You’dhope[palliativecarefunding]wouldbebasedonwhatthepopulationneeds.Everyonetalksaboutit,butthat’sveryfaraway.
Liz Callaghan, chief executive, Palliative Care Australia
“Everyoneisgettingolder,deathsarebecomingmorecomplicated,thenumberofdeathsperyearisincreasingandhospicesonlycatertoabout6%ofalldeaths,”saysDrSleeman.“Sothere’snowaywe’lleverhaveenoughin-patientbeds.”Aproxyindicatormeasuringthecapacitytodeliverpalliativecare,basedontheservicesavailablecomparedtothenumberofdeaths(Figure2.4),illustratesthescaleofthechallengefacingmostcountries,withthehighest(Austria)stillreachingjust64%andthemajorityofcountries—allbut28—under10%.29
DrSleemanarguesthatcarehomesandpeople’shomesshouldbethefocusfortheextensionofpalliativecareservices.“Itmeansputtinglessemphasisonaunitcateringtoonly22peopleatatimebuttakingskillsandprofessionalsintothecommunity,”shesays.“That’sthefuture.”
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The 2015 Quality of Death Index Ranking palliative care across the world
ThedevelopmentsinpalliativecareinSpainthatfollowedthe2007launchofanationalpalliativecarestrategy30demonstratewhatcanbeachievedwhenstandardsareco-ordinatedacrossanation.
Thecountryhaslonghadpocketsofexcellence:inCatalonia,extensivepalliativecareserviceshavebeenavailablesince1990throughtheCatalanHealthCareSystem,withmorethan95%oftheregioncoveredbypalliativecareservicesby2005.31 Butinacountrywherehealthcarefallsundertheauthorityof17regionalhealthsystems,unifyingapproachestopalliativecarehasdonemuchtoincreaseaccesstoservices.
“ItwasthedeterminantforthedevelopmentofpalliativecareinSpain,”saysJavierRocafortGil,formerpresidentoftheSpanishAssociationforPalliativeCare.“Thestrategyensuredthateveryregionalministryofhealthwouldworktogetherinthesamemanner.”
Since2007,anotherimportantdevelopmentinpalliativecaredevelopmenthasbeentheinvolvementof“laCaixa”bankingfoundation,whichhassupportedtheintegrationof29psychologicalandspiritualcareteamsintothecountry’spalliativecarenetwork.
Evenbeforethelaunchofthenationalstrategy,Spain—whichisatposition23intheoverallIndexand15inthepalliativeandhealthcareenvironmentcategory—hadfromthe1990sdevelopedastrongnetworkofhomecareservices.
“It’scultural,becauseinSpainpeoplewanttodieathome,”saysProfessorRocafortGil,whoisnowmedicaldirectorattheFundaciónVianorteLagunaatMadrid’sUniversidadFranciscodeVitoria.“Butit’salsobecauseprimarycareisverystrong—muchoftheinitialdevelopmentinspecialistpalliativecareinSpainwasinprimarycareteams.”
AndwhileSpainhasonlytwodedicatedhospices,servicesverysimilartothosefoundathospicesareavailableatthecountry’smedium-andlong-termstayhospitals.
However,despiteitsstrengthinmanyareasofpalliativecare,Spainstillhasworktodo.“Weareclosetohavingthenumberofunitsinhomecareandhospitalteamsweneed,”explainsProfessorRocafortGil.“Butwearestillfarfromhavingenoughunitsforchildren.”
Moreover,whileatuniversitiesmorethanhalfofmedicalstudentsnowundertakebasicandintermediarypalliativecareprogrammes,accreditationforspecialistpalliativecareteamsisstilllacking.This,saysProfessorRocafortGil,willrequirefurtherregulation.Andwhilelawspassedin2003and2004giveeverySpanishcitizentherighttoreceivepalliativecareathomeorinhospital,onlythreeregions—Andalusia,AragonandNavarra—havethekindofdetailedlegislationcoveringpalliativecarethathearguesshouldbeimplementedacrossthewholecountry.
Spain’sstrengthsandweaknesseshighlightthefactthat,evenincountriesthathavebroadaccesstohigh-qualityservices,theinterplayofpolicy,legislationandtrainingremainscriticalifserviceprovisionistomeetrisingdemandforcare.
Case study: Spain—The impact of a national strategy
Rank/80 Score/100
Quality of Death overall score (supply) 23 63.4
Palliative and healthcare environment 15 61.2
Human resources 36 42.6
Affordability of care =25 75.0
Quality of care 24 78.8
Community engagement =33 40.0
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
Spain
Average
Highest
0
20
40
60
80
100
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The 2015 Quality of Death Index Ranking palliative care across the world
WithbetteravailabilityofmedicinesthanmanyAfricancountriesandthecontinent’shighestnumberofhospices,SouthAfricaisatposition34intheIndex,thehighest-rankingAfricancountry.Infact,patientsfromneighbouringcountriessuchasSwaziland,NamibiaandBotswanareceivecareinSouthAfrica,explainsEmmanuelLuyirika,executivedirectoroftheAfricanPalliativeCareAssociation.
SupportforpalliativecareinSouthAfricaderivesfromavarietyofsources.Inadditiontogovernmentfunding,thecountryhasastrongnon-governmentalhospicemovement—offeringbothoutpatientandin-patientservices—withthe
HospicePalliativeCareAssociationofSouthAfricaamongtheleaders.Meanwhile,religiousinstitutionsalsohavehospitalsthatofferpalliativecare.
“Thecountryhasthebiggestnumberoffunctionalhospicesonthecontinent,”saysDrLuyirika.“ThatputsSouthAfricaonadifferentlevel.”
WhileSouthAfricaisnotthestrongestperformerintheIndexinthehumanresourcescategory(itisatposition59),inmanyways,ithasforgedaheadintrainingandskillsprovision.“It’srelativelywelldeveloped,”saysDrLuyirika.“Infact,thefirstmaster’sdegreeinpalliativecarewasofferedbytheUniversityofCapeTown.”Theuniversity’spostgraduatediplomainpalliativemedicine—adistance-learningprogramme—caterstoexperiencedhealthcareprofessionalssuchasdoctors,nursesandsocialworkers.32
Thecountry’sotherstrength,DrLuyirikaadds,liesinitslonghistoryofintegratingpalliativecareintotrainingforthoseworkinginfamilymedicinedepartments.
TheneedtohelpthosewithHIV-Aidshasalsopromptedthedevelopmentofnon-profitinitiatives,supportingpalliativecare.TheThogomeloProject,forexample,hasestablishedsupportgroupsforcaregivers.33
Meanwhile,SouthAfricahasplayedaprominentadvocacyroleinglobaldebates,withthehealthministerissuingastatementonpalliativecareatthe2013AfricanUnionmeetinginJohannesburg.
“ThedepartmentofhealthhasbeeninstrumentalincausingotherbodiesliketheAfricanUnion,theWorldHealthOrganizationandtheInternationalNarcoticsControlBoardtorecognisepalliativecare,”saysDrLuyirika.“SouthAfricahasbeeninstrumentalinensuringthatpalliativecareisgivenahigherprofileatthegloballevel.”
Case study: South Africa—Raising the palliative care profile
Rank/80 Score/100
Quality of Death overall score (supply) 34 48.5
Palliative and healthcare environment 32 41.7
Human resources 59 27.5
Affordability of care =44 57.5
Quality of care 31 63.8
Community engagement =33 40.0
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
South Africa
Average
Highest
0
20
40
60
80
100
30 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Human resources3 Therisingneedforpalliativecaremeanscountrieswillneedtospendmoreequippingdoctorsandnursestoprovideit.Partofthismeansprovidingappropriatetrainingforend-of-lifecareworkersinmedicalschools.However,tomeetgrowingdemand,thistrainingalsoneedstobeincorporatedintotheteachingforalldoctorsandnurses,withpalliativecareexpertisearequiredcomponentofbothgeneralandspecialisedmedicalqualifications.
InthiscategoryoftheIndex,countriesareassessedontheavailabilityofspecialistsinpalliativecareandpractitionerswithgeneralmedicalknowledgeofpalliativecare;thepresenceofcertificationsforpalliativecare;andthenumberofdoctorsandnursesforevery1,000palliativecare-relateddeaths(togaugetheburdenrelativetotheneedforpalliativecare).
Ofthese,theavailabilityofspecialisedpalliativecareworkersisgiventhehighestweighting,at40%ofthiscategory(and8%oftheoverallIndex,asthehumanresourcescategoryisweighted20%oftheoverallIndex;Figure3.2).Countriesthatscore5inthisindicatorhaveprofessionallyornationallyaccreditedspecialisttrainingfortheircorepalliativecareteams.Bycontrast,ascoreof1indicatesanabsenceofcertificationoraccreditationandasevereshortageofpalliativecareprofessionals.
Generalmedicalknowledgeofpalliativecareisalsoimportant(accountingfor30%ofthiscategory),withscoresof5awardedtocountrieswhereallnursesanddoctorshaveagood
understandingofpalliativecare,andpalliativecareiscompulsoryindoctorandnursetrainingschoolsandhealthcareprofessionalsreceiveprofessionaltrainingthroughouttheircareers.Forthosescoring1,thereisnosuchknowledgeortrainingavailable.
Inthiscategory,atthetopofthelistisAustralia,followedbytheUKandGermany.SingaporeandTaiwanmakeitintothetop10inthisindicator,butAsia’spoorer,morepopulousnationsdoworse.India,forexample,hasashortageofspecialisedcareprofessionalsandaccreditationforpalliativecareisnotyetthenorm.However,thecountryisworkingtowardschangingthis,accordingtoSushmaBhatnagar,headofanaesthesiology,painandpalliativecareattheAllIndiaInstituteofMedicalSciences’DrBRAmbedkarInstitute-RotaryCancerHospital.
DrBhatnagarhighlightsvariousteachingprogrammesthathaveemergedacrossIndiasincethegovernmentintroducedanationalpalliativecarepolicyin2012.ThisincludesamajornationalinitiativelaunchedbytheIndianAssociationofPalliativeCare.“Theyareorganisingessentialcoursesinpalliativecareinalmostall30centres,”saysDrBhatnagar.“Soit’sgoodnewsforthecountry.”
Meanwhile,incountriesthatperformwellinthiscategory,someseeroomforimprovement.WhileAustraliaisinfirstplace,forexample,YvonneMcMaster,aretiredpalliativecaredoctor
Ifevery[healthprofessional]haspalliativecareintheirbasiceducation,thennoonewillcomeoutnotunderstandingpainmanagement,howtocommunicatewithpatientsandfamiliesorthatpsychological,socialandspiritualcarearepartofpalliativecare,notanoptionalextra.
Sheila Payne, emeritus professor at the International Observatory on End of Life Care at Lancaster University
31 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
andadvocateforpalliativecare,identifiesgapsinhumanresourcesinfrastructure.
ShecitesthecaseofNewSouthWales,whichishometoone-thirdofAustralia’spopulation.“IntheruralandregionalareasoutsidetheSydneymetropolitancluster,mostpalliativecareisdonebynurses,”shesays.“ThereareonlyfourspecialistdoctorsinNewSouthWalesoutsidetheSydneyarea.Andeventhoughmorearebeingtrainedthefundingisn’tbeingprovidedforthepositions.”
DespiteFrance’spositionat10thinthiscategory,gapsintrainingstillexist.Forexample,whilemaster’sdegreesinpalliativecareareavailablefordoctorsoncetheyhavequalified,littleattentionispaidtoitduringtheirinitialtraining.“Fordoctors,thereareonly10hoursinalloftheirtrainingtostudypalliativecare,”saysAnnedelaTour,headofthedepartmentofpalliativecareandchronicpainattheCentreHospitalierVDupouy.Sheaddsthatnurseshavenorecognitionintermsofsalaryorstatusforhavingaspecialisationinpalliativecare.
Uruguayperformsrelativelywellinthiscategory,comingwithinthetop25countriesandinthetopthreeintheAmericas.YetDrYanneo,oftheLatinAmericanAssociationforPalliativeCare,highlightsweaknesses.Themainproblem,hesays,isthatthegovernment’sinitialhumanresourcesfocushasnotledtothedevelopmentofarobustpalliativecarediscipline.“Unfortunately,theseeffortsdidnothavesufficient,timelyandadequatesupportfromuniversityandgovernmentauthorities,”hesays.
Infact,hepointsto“improvingeducationandcertificationinthediscipline”asoneofthebiggestchallengesfacedbymostLatinAmericancountries.
ThisshouldbeapriorityforChile,saysCeciliaSepulveda,formerheadoftheNationalCancerControlProgrammeatChile’sministryof
Human resources category (20% weighting)
Figure 3.1
Rank Country
BangladeshIraqIran
MyanmarBulgaria
PhilippinesEthiopia
KenyaBotswanaIndonesia
ChinaVietnam
GuatemalaIndiaPeru
Puerto RicoDominican Republic
TanzaniaZimbabwe
GreeceKazakhstan
South AfricaNigeriaTurkey
Sri LankaRussia
RomaniaColombiaSlovakiaEcuador
MalawiSaudi Arabia
EgyptGhana
MoroccoThailand
VenezuelaUkrainePanama
Costa RicaMalaysia
CubaHungaryPortugal
SpainZambiaMexico
BrazilChile
PolandJordan
ArgentinaLithuania
ItalyCzech Republic
UruguayUganda
IsraelNetherlands
MongoliaHong Kong
DenmarkFinland
BelgiumJapan
SwitzerlandUS
South KoreaAustriaSweden
FranceTaiwan
SingaporeNorwayCanada
New ZealandIreland
GermanyUK
Australia
1.34.0
11.511.611.612.8
17.918.819.619.721.021.322.122.322.523.024.425.125.825.927.027.527.928.830.031.031.333.834.034.435.135.436.136.337.139.539.839.841.641.641.741.942.142.342.643.245.446.247.449.449.450.751.351.552.252.654.0
57.559.661.162.162.462.6
66.067.569.470.271.271.471.671.672.274.075.578.0
81.486.187.988.2
92.3
807978
=76=76
75747372717069686766656463626160595857565554535251504948474645
=43=43=41=41
403938373635343332
=30=30
292827262524232221201918171615141312
=10=10
987654321
32 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Figure 3.2: Availability of specialised palliative care workers5 4 3 2 1
Therearesufficientspecialisedpalliativecareprofessionals,includingdoctors,nurses,psychologists,socialworkersetc.Voluntaryworkersshouldhaveparticipatedinacourseofinstructionforvoluntaryhospiceworkers.Thespecialistpalliativecaretrainingforthecorecareteamisaccreditedbynationalprofessionalboards.
Thereisanadequatenumberofspecialisedpalliativecareprofessionals,butinsomesupportfunctions(psychologists,socialworkersetc),thereareshortages.Specialistpalliativetrainingisaccreditedbynationalprofessionalboards,butthiscanbeinconsistentattimes.
Therearespecialisedpalliativecareprofessionalsbutthereareshortagesofphysicians,nursesandothersupportstaff.Specialistpalliativecaretrainingisgenerallynotaccreditedbynationalprofessionalboards.
Thereisashortageofspecialisedpalliativecareprofessionals,andaccreditationofspecialistpalliativecaretrainingisnotthenorm.
Thereisasevereshortageofspecialisedpalliativecareprofessionalsandaccreditationisnon-existent.
Australia UK Austria Netherlands Argentina Lithuania Botswana Myanmar Bangladesh Iraq
Germany Belgium NewZealand Brazil Mexico China Nigeria Bulgaria Philippines
Canada Norway Chile Mongolia Colombia Panama Iran
Finland Singapore CostaRica Morocco Dominican Peru
France SouthKorea Cuba Poland Republic PuertoRico
HongKong Sweden Czech Portugal Ethiopia Romania
Ireland Switzerland Republic Spain Ghana Rusia
Italy Taiwan Denmark Thailand Greece SaudiArabia
Japan US Ecuador Uganda Guatemala Slovakia
Egypt Ukraine India SouthAfrica
Hungary Uruguay Indonesia SriLanka
Israel Venezuela Jordan Tanzania
Kazakhstan Turkey
Kenya Vietnam
Malawi Zambia
Malaysia Zimbabwe
health.“There’snospecialistpalliativecareofficiallyrecognisedbyuniversitiesandmedicalsocieties,”shesays.“Wealsoneedtohavedifferentlevelsoftraining—oneisspecialised;theotherisforthefamilydoctors,sotheycanprovidepalliativecareaspartofprimarycare.Thatisnotthereyet,althoughtherearesomeinitiativestotrytomoveinthatdirection.”DrYanneoagrees.“Perhapsthegreatestdeficiencyinthiscountryisthelackofadvancededucationinthediscipline,”hesays.
Forsome,thepriorityshouldbetostartincludingpalliativecareinthebasiceducation
ofeverysinglehealthprofessional.“Itmighttakealongtimetomakethechange,”saysDrPayne.“Butifeveryonehaspalliativecareintheirbasiceducation,thennoonewillcomeoutnotunderstandingpainmanagement,howtocommunicatewithpatientsandfamiliesorthatpsychological,socialandspiritualcarearepartofpalliativecare,notanoptionalextra.”
IntheUS—whichfallsoutsidethetop10inthiscategory,atposition14—medicalschoolsshouldberequiredtotraindoctorstoassessandtreatpainandtocommunicatemoreeffectively
33 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
withpatientsandfamiliesabouttreatmentdecisions,arguesDrByock.Hebelievesacademicinstitutionsshouldbetestingdoctorsontheseskillsaspartofgainingtheirmedicaldegrees.
“Butthey’vemadeonlyincrementalimprovementsinmedicaltrainingandeducationoverthepast10years,”hesays.“Therehavebeensomeimprovementsbutthosearesmallcomparedtowhat’sneeded.”
34 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Since2010,whenthecountryintroduceditsnationalpalliativecareprogramme,Panamahastripledthenumberofpatientsbeingservedfromabout1,000toabout3,000in2014.Drivingthisandotheradvanceshasbeenthecountry’semphasisonaprimarycareapproachtodevelopingpalliativecare.
Thisisparticularlyrelevanttosmaller,lesswealthycountries,arguesGasparDaCosta,palliativecareco-ordinatoratPanama’sministryofhealthandthecountry’spalliativecarechampion.“Palliativecareispartofprimarycare,”hesays.“Ifyoutreatitasaspecialisation,it’saproblemforsmallcountriesbecausetheycannotaffordspecialisedcare.Weneedteamsthathavepalliativecaretraining.”
Muchoftheworktoincreaseaccesstoserviceshasthereforefocusedontraining.Anationalstandardpalliativecareprogrammeprovidesadvicetoprofessionalcaregiversaswellastechnicalguidanceonissuessuchasinformationsystems
andprocessesforobtainingmedicinesandsupplies.Palliativecareprogrammeco-ordinatorsarepresentinPanama’s14healthregions,aswellashealthstaffwhoaretrainedinbasichospiceandhomecareservicesandcareforpatientswithadvanceddisease.34
Theseinvestmentsappeartobepayingoff.PanamanowsharessixthplaceintheaffordabilityofcarecategoryoftheIndex(withCubaandamixofrichercountries).Itisinthetop30,atposition25,inthepalliativeandhealthcareenvironmentcategoryandranksatposition31intheoverallIndexandinsecondplaceinthemiddleincomegroupingofcountries.
Meanwhile,Panamahasalsoacquiredaglobalprofileintheworldofpalliativecare,sinceitplayedaprominentroleinthedraftingandadoptionin2014oftheresolutiononpalliativecareattheWorldHealthAssemblyinGeneva(seeboxonpage43).
“Panamawasveryinvolved,”saysDrConnor.“Itdidabrilliantjobofbeingpersistentandchampioningtheeffort.”Muchofthiswasasaresultofindividualleadership.“JorgeCorrales,counsellorofthepermanentmissionofPanamatoGeneva,tookthisonasapersonpassion.”
“ThePanamanianteamwasverycollaborativewithcivilsociety,”headds.“Andthat’sthewayitshouldwork.Theyreallytookonboardalloursuggestions.”
Increasingthequalityofcareremainsachallenge(Panamaslipstoposition38inthiscategoryoftheIndex),partlyduetothetightregulationofaccesstoopioids.“Theproblemisthatthelawgoverningopioidshasnotchangedsince1954,”explainsDrDaCosta.35Healsohighlightstheneedforthecreationofamedicalspecialtyinpalliativecare,aswellasincreasedtrainingoftheprimarycareteamsinpalliativecare(Panamaslipstoposition41inthehumanresourcescategoryoftheindex).
Thenexttask,saysDrDaCosta,istopushforlegislativechange.However,sincesupportforachangeinthelawhasalreadybeenexpressedattheexecutivelevelofgovernment,heisoptimisticthattheNationalAssemblywillmakethechange.
Case study: Panama—Palliative care is primary care
Rank/80 Score/100
Quality of Death overall score (supply) 31 53.6
Palliative and healthcare environment 25 51.2
Human resources =41 41.6
Affordability of care =6 87.5
Quality of care =38 47.5
Community engagement =38 32.5
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
Panama
Average
Highest
0
20
40
60
80
100
35 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Affordability of care4 Governmentfundingisessentialinordertoincreaseaccesstocare.Insomecases,governmentshaveestablishedsubsidiesforpalliativecareservicesorofferstate-runservices.Insomecountries,nationalpensionschemescoverthecostsofpalliativecareservices(thisisthecasefor32ofthecountriesintheIndex).Thenon-profitsectoroftenplaysarole,too.IncountriessuchastheUK,palliativecareandhospiceservicesarestronglysupportedbythecharitablesector.
Inothercases,though,littlefundingismadeavailabletopatientsinneedofthisformofcare,particularlyinpoorcountries,whereneithergovernmentfundingnorprivateinsuranceisavailable.Moreover,evenifstate-runprogrammesorsubsidiesareavailable,theymaybedifficulttoaccessandpoorlymonitored.
Inthiscategory,countriesareassessedonthreeindicators:availabilityofpublicfundingforpalliativecare,thefinancialburdenpalliativecareplacesonpatients,andtheavailabilityofcoveragethroughnationalpensionschemes.Ofthese,publicfundingavailabilityandthefinancialburdentopatientsreceivethehighestweightings,of50%and40%respectively.
Inthiscategory,Australia,Belgium,Denmark,IrelandandtheUKtopthelist(andthehigh-incomecountrygroup),whileCubaandPanamasharesecondplacewithanumberofrichercountriesinEurope(Finland,Germany,Italy,theNetherlandsandSweden)andAsia(Singapore,SouthKoreaandTaiwan,
Figure4.1).AtthebottomofthelistarethePhilippines,Zambia,Zimbabwe,UkraineandNigeria.Aswellasmakingitintothetop10inthiscategory,CubaandPanamaalsotopthelistoftheAmericasregion,abovetheUS,whichsharesthirdplacewithChile.
TherelativelyhighrankoftheUSmightseemodd,sinceUShealthcareislargelyoperatedbytheprivatesectorandAmericanspayahighpriceforit,bothininsurancepremiumsandout-of-pocketcosts.YetforAmericansthingschangedramaticallyaftertheageof65,whentheybecomeeligibleforthefederallyfundedMedicareprogramme,whichprovideshealthinsurancetothosethathaveworkedandpaidintothesystem.
Evenso,thisreimbursementsystemhascreatedincentivesforgreateruseofservicessuchashospitalstays,intensiveandemergencycare,resultinginlatehospiceenrolment—particularlyaspatientshavetorelinquishcurativetreatmentstobeeligibleforreimbursementsforpalliativecare.36
Moreover,giventhecomplexnatureoftheconditionsofpatientsinneedofpalliativecare,theUSsystemhasitsflaws,saysJamesTulsky,chairoftheDepartmentofPsychosocialOncologyandPalliativeCareattheDana-FarberCancerInstituteinBoston.
“ThefinancingsystemsintheUShavecreatedsignificantproblems,”saysDrTulsky,whocontributedtotheInstituteofMedicine’s
OneoftherecommendationsofDying in America istobreakdownbarriersbetweenmedicalandsocialfunding.Becauseoftenalotofwhatpeopleneedtowardstheendoflifecan’tbemetthroughtraditionalfundingmodels.
James Tulsky, chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute
36 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
2014Dying in America report.37“Sooneoftherecommendationsofthereportistobreakdownbarriersbetweenmedicalandsocialfunding,”hesays.“Becauseoftenalotofwhatpeopleneedtowardstheendoflifecan’tbemetthroughtraditionalfundingmodels.”
AndwhileAustraliasharesfirstplaceinthiscategory,changesinfundingmodelsaspartofbroaderhealthcarereformsinthecountryarecreatingsomeuncertaintyforthoseinneedofcare.Thisisthecasewithcommunityandhomecare,whichhastraditionallybeenfundedthroughtheHomeandCommunityCareprogramme.ThisprogrammeisbeingwoundupandwillbeincorporatedintoaHomeSupportprogramme,explainsPCA’sMsCallaghan.“Ahugeamountofreformishappeninginthewaycommunitycareservicesareprovided,”shesays.“Butweareunclearastowhathappenstopalliativecareasaresultofthosechanges.”
Inmanycountries,affordabilityofcarecomesthankstocharitablefunding.Thisisthecaseinrichcountries,suchastheUK,whichreceivesthetopscoreintheindicatormeasuringthefinancialburdentopatients,indicatingthat80%to100%ofend-of-lifecareservicesarepaidforbysourcesotherthanthepatient.However,muchofthiscomesfromcharitablefunding,whichintheUKsupportsalargeproportionofhospiceandpalliativecareservices.
Thisisalsotrueinsomedevelopingcountries.Romania,forexample,scoresonly2outof5whenitcomestoavailabilityofpublicfundingforpalliativecareservices(Figure4.2).Thisisbecausealthoughfundsareavailableintheory,patientsmustmeetanumberofstringentrequirementstoqualifyandmustgothroughatorturousbureaucraticprocess(thatevenhospitalsanddoctorsmaynotbefamiliarwith),whichdiscouragesusage.However,itscores3intheindicatormarkingthefinancialburdentopatients,whichmeansthat40%to60%ofend-of-lifecareservicesarepaidforbysourcesotherthanthepatient.
Affordability of care category (20% weighting)
Figure 4.1
Rank Country
NigeriaUkraine
ZimbabweZambia
PhilippinesIndia
GuatemalaEgypt
BangladeshTurkey
UgandaDominican Republic
SlovakiaRomania
IndonesiaChina
TanzaniaMalawiKenya
IraqColombiaMyanmarEthiopia
Puerto RicoIranPeru
GhanaSri LankaMorocco
IsraelBrazil
BotswanaVietnamHungary
South AfricaBulgaria
ArgentinaRussiaGreece
ThailandPoland
MongoliaJordan
Czech RepublicAustria
UruguaySaudi Arabia
MexicoMalaysiaEcuador
Costa RicaVenezuela
SpainPortugal
LithuaniaKazakhstan
NorwayFrance
CanadaUS
SwitzerlandHong Kong
ChileJapan
TaiwanSweden
South KoreaSingapore
PanamaNew ZealandNetherlands
ItalyGermany
FinlandCuba
UKIreland
DenmarkBelgium
Australia
012.5
17.522.5
27.527.527.530.030.032.535.035.037.537.537.537.540.040.040.040.040.042.542.545.047.550.050.052.552.552.552.552.555.055.057.557.557.560.060.062.562.565.065.065.065.0
70.070.070.070.070.070.0
75.075.075.075.075.077.577.577.5
82.582.582.582.585.087.587.587.587.587.587.587.587.587.587.587.5
100.0100.0100.0100.0100.0
80797877
=74=74=74=72=72
71=69=69=65=65=65=65=60=60=60=60=60=58=58
5756
=54=54=49=49=49=49=49=47=47=44=44=44=42=42=40=40=36=36=36=36=30=30=30=30=30=30=25=25=25=25=25=22=22=22=18=18=18=18
17=6=6=6=6=6=6=6=6=6=6=6=1=1=1=1=1
37 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Figure 4.2: Availability of public funding for palliative care5 4 3 2 1
Thereareextensivegovernmentsubsidiesorprogrammesforindividualsaccessingpalliativecareservices.Thequalificationcriteriaareclearandtheprocesstoaccesssuchfundingislargelyeasyandsmooth.Informationonhowtoaccesssuchfundingiswidelyavailable.Theeffectivenessofprogrammesisroutinelyandadequatelymonitored.
Thereareadequategovernmentsubsidiesforindividualsaccessingpalliativecareservices.Thequalificationcriteriaareclearandtheprocesstoaccesssuchprogrammesislargelyeasyandsmooth.Theeffectivenessofprogrammesisunevenlymonitored.
Thereareadequategovernmentsubsidiesorprogrammesforindividualsaccessingpalliativecareservices.Thequalificationcriteriaareclear,butfundsandprogrammesaredifficulttoaccess.Theeffectivenessofprogrammesisnotmonitored.
Thereisalimitednumberofgovernmentsubsidiesorprogrammesforindividualsaccessingpalliativecareservices.Whereavailable,thequalificationcriteriaareunclear,andfundsandprogrammesaredifficulttoaccess.
Therearenogovernmentsubsidiesforindividualsaccessingpalliativecareservices.
Australia Ireland Canada NewZealand Austria Malaysia Argentina Myanmar Bangladesh Malawi
Belgium Japan Chile Norway Colombia Mexico Botswana Philippines Dominican Nigeria
Denmark UK Cuba Panama CostaRica Mongolia Brazil Poland Republic PuertoRico
Finland Singapore Czech Peru Bulgaria Romania Egypt Tanzania
France SouthKorea Republic Portugal China Slovakia Iraq
Germany Sweden Ecuador Russia Ethiopia SouthAfrica
HongKong Switzerland Ghana SaudiArabia Guatemala SriLanka
Italy Taiwan Greece Spain India Thailand
Netherlands US Hungary Uganda Indonesia Turkey
Jordan Uruguay Iran Ukraine
Kazakhstan Venezuela Israel Zambia
Kenya Vietnam Morocco Zimbabwe
Lithuania
Thisislargelybecauseofgenerouscharitablefunding.Forexample,itwasaUKphilanthropist,GrahamPerolls,whosetupRomania’sleadinghospiceprogramme,CasaSperantei,toofferfreepalliativecareservices.CasaSperanteihasreceivedfundingfromcharitableorganisations(includingtheUK’sHospicesofHope)andcorporatedonors,andhasbeentherecipientofgrantsfromUSAID,theEUandtheSorosOpenSocietyInstituteNewYork.38
However,whilesuchinstitutionshavebeenjustifiablypraisedfortheirroleininitiatingpalliativecareinmanycountries,DrPaynearguesthattocopewithfuturedemand,countriesneedtoembracethepublichealthmodelofpalliativecareandextendpalliativecareintoabroadrangeofhealthcareservices.“Wehavetomovefromoneortwofantasticcharitablyfundedcentres,”shesays.“Reallyweshouldbemovingtowardspalliativecareforall,inanybedsthatpeoplearein.”
38 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
WhiletheAffordableCareAct—thehealthcarereformlegislationsignedintolawin201039—hassweptchangesthroughitshealthcaresystem,whenitcomestothedeliveryofpalliativecareintheUS,atposition9intheoverallIndexandsixthinthepalliativeandhealthcareenvironmentcategory,healthreformisnottheonlydriverofchange.
MuchofthegrowthinpalliativecareserviceshascomeasaresultofthecoveragegapsleftbyUSreimbursementssystems,saysDianeMeier,directoroftheCentertoAdvancePalliativeCareatMountSinaiHospital’sIcahnSchoolofMedicine.
Thepatientsresponsibleforthehighesthealthcarespending,sheexplains,havebeenthosewithconditionssuchasfrailty,co-morbidity,functionalimpairment,heartfailure,diabetes,strokeandchronicobstructivepulmonarydisease;conditionsresponsibleforthebulkofdeathsintheUS.
Thetroubleis,patientsareonlyeligibleforreimbursementsforhomecareif,havingbeendischargedfromhospital,theyhavea“skillsneed”—thatis,theyrequireanurseorphysicaltherapisttohelpthemlearntotakeinsulinortodressawound.
Andtoqualifyforhospicehomecarerequirestwodoctorstosaythepatientislikelytodieinthenextsixmonths.“Andinmostcases,wehavenoideauntiltheveryend,”saysDrMeier.
Inreturnforhospicecare,thepatientmustgiveupinsurancecoveragefordiseasetreatment.“ButifyouhaveheartfailureandIgiveyouadiuretictotakefluidoffyourlungs,thatprolongsyourlifebutalsoimprovesyourqualityoflife,”saysDrMeier.“Sothisideathatthere’sabrightlinebetweendiseasetreatmentandpalliativetreatmentisanillusion.”
Moreover,thetraditionalfee-for-servicemodelofreimbursementinMedicare,thefederalprogrammeprovidinghealthinsurancecoveragetoindividualsover65,hascreatedincentivesforgreateruseofservicessuchashospitalstays,andintensiveandemergencycare.Thisoftenresultsinlatehospiceenrolment,diminishingthequalityofcareforthosenearingtheendoftheirlivesandpushingupcosts.40
“Thevastmajorityofpeoplewhomightbenefitfrompalliativecaremightnotgetitbecausetheyarenoteligibleforhospice,”saysDrMeier.
Thegapsincoveragethathaveresultedfromreimbursementrestrictionsandfinancialdisincentivestoprovidepalliativecarehavebeenfilledbyprivatephilanthropicfunding.Fromthelate1980s,thishasresultedinthecreationofsub-specialisationsinmedicine,nursingandsocialwork,withmostteachinghospitalsnowreportingthepresenceofpalliativecareteamsandanincreasingbodyofresearch,DrMeiersays.
TheAffordableCareActhasalsomadeacontributiontothedevelopmentofpalliativecare,byshiftinghealthcaredeliverymodelsfromvolumetovalue.
Whileithasbeenslowtoimplement,theemphasisisonmovingawayfromfee-for-servicereimbursementtowardsafocusonpopulationhealth,team-basedapproachestocareandsharedassumptionoffinancialrisk.“Andthatcreatesastrongbusinesscaseforpalliativecare,”saysDrMeier.
Whatthismeansisthatprivatesectorinsurers—ratherthanthegovernment—aredrivingserviceprovisionbecausetheyhaverecogniseditisintheirfinancialintereststopreventunnecessaryhospitalstaysandemergencyroomvisits.
DrMeierseesgoodandbadnewsinthis.First,theprivatesectorisnimblerandmoreinnovativethangovernment.Anditiseasierforcompaniestoofferpalliativecareservicesthanfor
Case study: US—Filling in the gaps
Thisideathatthere’sabrightlinebetweendiseasetreatmentandpalliativetreatmentisanillusion.
Diane Meier, director, Center to Advance Palliative Care
Rank/80 Score/100
Quality of Death overall score (supply) 9 80.8
Palliative and healthcare environment 6 78.9
Human resources 14 70.2
Affordability of care =18 82.5
Quality of care =8 90.0
Community engagement =9 75.0
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
United States of America
Average
Highest
0
20
40
60
80
100
39 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Acrosstheworld,largenumbersofpeopledieinhospitaleachyear,yetmanywouldratherspendtheirfinaldaysathomeorinahospice.IntheUK,thisissomethingthepalliativecarecommunityisworkingtochange—notonlytoincreasethequalityofcarepeoplereceivebutalsotohelpthecountry’sNationalHealthServicecutcosts.
RecentresearchbyAgeUK,acharity,foundthattheaveragenumberofpatientskeptinhospitalunnecessarilywhilewaitingforcommunityorsocialcareroseby19%between2013/14and2014/15.AnNHSbedcostsonaverage£1,925(US$2,980)perweek,AgeUKestimates,comparedtoabout£558foraweekinresidentialcareor£357forhomecare.42
“It’saverysimplecase,”saysDavidPraill,untilrecentlychiefexecutiveofHospiceUK(formerlyHelptheHospices).“Evidencesuggeststhatthevastmajorityofpeopledyinginhospitaldon’twanttobethere.”MrPraillcallsthisthe“silent
waitinglist”ofpeoplewhowouldratherdieathomeorinacommunitycarefacility.
HospiceUKbelievesthenumberofpeopledyinginhospitalcouldbecutby20%.Itisembarkingonresearchtoidentifymodelsinplacearoundthecountrythatareworkingtowardsthisgoal,andtoassesswhichishavingthebiggestimpact.“Alotofdifferentmodelsarebeingexploredandthat’sgottobepartoftheefforttogetpeopletostayathomeorgetbackthere,”MrPraillsays.“Andthefeedbackwe’regettinginformallyisthatyoucanmakeadifference,evenifyoujusthavethatpersonforthelast24hoursbeforedeath.”
InsomepartsoftheUK,patientsarereturnedtotheirhomeswithintensivepackagesofcare.Technologyenablingremotemonitoringcansupportthis.Anotheroptionisforpeopletobecaredforincommunityornursinghomesorhospices.
MarieCurieCancerCareprovideshomepalliativecarenursingandothersupport.ItsDeliveringChoiceProgramme,launchedin2004,helpsensurepatientsarecaredforintheirplaceofchoice.Onestudyfoundthatpeoplewhousedtheprogrammewereatleast30%lesslikelytodieinhospital,orhaveanemergencyhospitaladmissionoremergencydepartmentvisitinthelastdaysoflife,thanthosewhodidnotuseit.43
HospiceUKarguesthataswellasincreasingqualityofcare,keepingdyingpeopleoutofhospitalwillsaveNHSfundsandincreasetheavailabilityofhospitalbedsforthoseinneedofacutecare.
“Everyoneagreesit’sascandalthatsomanypeoplearedyinginhospitalswhodon’twanttobethere.Butit’salsoblockingthepublicwaitinglist,”saysMrPraill.“Soifwecangetpeopleoutofhospitalthatdon’tneedtobethere,evenifit’sonlyforthelastfewdaysoflife,itfreesupbeds.”
Case study: UK—Dying out of hospital
Rank/80 Score/100
Quality of Death overall score (supply) 1 93.9
Palliative and healthcare environment 1 85.2
Human resources 2 88.2
Affordability of care =1 100.0
Quality of care 1 100.0
Community engagement =3 92.5
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
United Kingdom
Average
Highest
0
20
40
60
80
100
Theevidencesuggeststhatthevastmajorityofpeopledyinginhospitaldon’twanttobethere.
David Praill, former chief executive, Hospice UK
thepublicsector,whichwasfamouslyaccusedofplanningtorun“deathpanels”.41
Conversely,inthelongterm,DrMeierworriesabouttheprofitmotive.“Theobviousdisadvantageisthatprivatesectoris
beholdentoshareholderstoprovidequarterlyreturns,”shesays.“Sotheworryisthatimportantneededcarethatisexpensivemightnotbeoffered.”
40 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Quality of care5 Whilecountriesneedtoworktoincreaseaccesstopalliativecareandensuretheyareaffordable,theymustalsoconsiderthequalityoftheservicesavailable.Acrucialpartofthisisensuringthatpainkillerssuchasopioidsarereadilyavailableandeasytoadminister.Othercomponentsofhighqualitypalliativecareincludetheavailabilityofpsychologicalsupportandtheabilityandwillingnessofdoctorstoinvolvepatientsintheirowncareandaccommodateindividualcarechoices.Forfamilies,bereavementservicesarealsoimportantasindividualsstruggletocopewithloss.
Inthiscategory,sixindicatorsareusedtodeterminetherelativequalityofcareavailableindifferentcountries:thepresenceofmonitoringstandardsfororganisations(whichareinplacein49ofthecountriesintheIndex),theavailabilityofopioidpainkillersandpsychosocialsupportforpatientsandfamilies,thepresenceof“donotresuscitate”(DNR)policies,supportforshareddecision-makingandtheuseofpatientsatisfactionsurveys.
TheUK,SwedenandAustraliatopthislist(astheydointhehigh-incomecountrygroup)while,withinEurope,theUK,SwedenandFrancegetthehighestscores.Aswiththehumanresourcesindicator,AustraliascoreshighestamongAsia-Pacificcountries,followedbyNewZealandinsecondpositionasSingaporeandTaiwansharethird.
EgyptisinfourthpositionintheMiddleEastandAfricancountrygrouping.ThisisthefirsttimeEgypt,whichoveralldoespoorlyintheIndex(rankedequal56thwithGreece),makesitintoatopfivepositionregionally.Itscores2outof3whenitcomestopsychosocialsupport,indicatingthatthisisgenerallyavailableforfamiliesandpatients,and4outof5onshareddecision-making,indicatingthatdoctorsgenerallyinformpatientsoftheirdiagnosisandprognosis—infactthisisenshrinedinlaw.
Oftheindicatorsinthiscategory,theavailabilityofopioids—afundamentalpalliativecaretool—isweightedmostheavily,accountingfor30%(andhence9%oftheoverallIndex,sincethequalityofcarecategoryhasa30%weightingoverall).Whiledrugssuchasmorphineareinexpensive,restrictionsdesignedtopreventdrugabusehavehamperedaccesstothem.Moreover,sincepolicymakershavefocusedoncontrollingsubstanceabuseratherthanincreasingaccesstothesepainkillers,insufficientnumbersofnursesanddoctorsaretrainedtoadministerpaincontroldrugsinmanyplaces,particularlyindevelopingcountries.
Encouragingly,morethan30countriesintheIndexscore5outof5whenitcomestotheavailabilityofopioidpainkillers(Figure5.2),indicatingthattheyarefreelyavailableandaccessible.However,worryingly,theuseofsuchanalgesicsishamperedintherestofthecountriesintheIndexeitherbecauseofredtape,prejudicesorlegalrestrictions.
41 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Quality of care category (30% weighting)
Figure 5.1
Rank Country
IraqSri Lanka
MalawiBangladeshPhilippines
MyanmarSaudi Arabia
IranDominican Republic
BotswanaNigeria
ChinaZambia
ColombiaUkraine
VenezuelaGuatemala
GreeceVietnam
KazakhstanIndia
EthiopiaGhanaRussia
MoroccoKenya
MexicoUruguaySlovakia
BrazilTanzaniaThailandRomania
CubaZimbabwe
JordanBulgaria
PeruIndonesia
EcuadorPanama
MalaysiaHungary
Puerto RicoEgypt
UgandaTurkey
MongoliaChile
South AfricaCosta RicaLithuania
Czech RepublicPoland
ArgentinaIsraelSpain
PortugalIreland
South KoreaHong Kong
NorwayJapan
GermanyDenmark
FinlandItaly
AustriaUS
TaiwanSwitzerland
SingaporeNetherlands
BelgiumCanadaFrance
New ZealandAustralia
SwedenUK
3.86.36.37.510.011.312.513.813.813.815.016.318.818.820.021.321.323.826.326.326.326.328.830.030.030.031.333.833.833.835.036.336.337.540.040.040.041.342.543.8
47.547.547.550.0
53.856.357.560.060.0
63.865.067.570.0
73.875.076.378.880.080.081.381.383.883.883.883.886.387.587.590.090.090.090.090.091.392.593.895.096.397.5100.0
80=78=78
77767574
=71=71=71
7069
=67=67
66=64=64
63=59=59=59=59
58=55=55=55
54=51=51=51
50=48=48
47=44=44=44
434241
=38=38=38
37363534
=32=32
3130292827262524
=22=22=20=20=16=16=16=16
15=13=13
=8=8=8=8=8
7654321
Eveniflegalrestrictionsarerelaxed,barriersremain,saystheWHPCA’sDrConnor.“We’vehadvariousinitiativestoimproveaccesstoopioidsbutitturnsouttobequitedifficulttomakethedrugsavailableinindividualcountries,”hesays.Hurdlesincludethefactthatministriesofhealthhavetoapproveuseofthedrugs,importersandimportlicenceshavetobeinplace,andphysicianshavetobetrainedintheiruse.
EvenincountriesthatdowellintheIndexgapsareemerging.InarecentJournal of Palliative MedicinesurveyconductedintheUS,whichisinthetop10intheoverallIndex,respondentsin2011-2013weremorelikelytostatethattheirlovedonesreceivedinsufficientpainreliefthanrespondentsin2000.44
Nevertheless,inmanyplaces,advancesarebeingmade.First,theWHAresolutionsentanimportantsignal,acknowledgingthat“itistheethicaldutyofhealthcareprofessionalstoalleviatepainandsuffering,whetherphysical,psychosocialorspiritual,irrespectiveofwhetherthediseaseorconditioncanbecured”.45
InIndia,thepassingin2014oftheNarcoticDrugsandPsychotropicSubstances(Amendment)Actbyparliamentbringslegalclarityforphysicianswantingtoprescribeopioidstotheirpatients.46Whileworkremainstobedonetotraindoctorsandnurses,thepassingofthebillrepresentsamajorstepforwardforIndia,whichwascriticisedina2009HumanRightsWatchreportforfailingtofacilitateprovisionofopioidpainkillerstoitscitizens(anissuealsohighlightedinthereportaccompanyingthe2010EIUQualityofDeathIndex).47“Untilrecently,itwasverycomplicatedtoprocureanddispensemorphine,”saysDrBhatnagar.“Now,itwillbemucheasier.”
42 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Figure 5.2: Availability of opioid painkillers5 4 3 2 1
Freelyavailableandaccessible Available,butaccessissomewhatrestrictedbybureaucraticredtape
Noteasilyavailableand/oraccessisrestrictedthroughlawsandbureaucraticredtapeorprejudices
Onlyavailableinlimitedcircumstances
Illegal
Argentina Malaysia Chile Turkey Brazil Indonesia Bangladesh Nigeria
Australia Netherlands Jordan Uruguay Bulgaria Iran Botswana Philippines
Austria NewZealand SouthAfrica China Mexico Egypt Russia
Belgium Norway Colombia Mongolia India SaudiArabia
Canada Poland Cuba Morocco Iraq SriLanka
CostaRica Portugal Dominican Panama Kazakhstan Tanzania
CzechRepublic PuertoRico Republic Peru Kenya Zambia
Denmark Singapore Ecuador Romania Malawi Zimbabwe
Finland Slovakia Ethiopia Thailand Myanmar
France SouthKorea Ghana Uganda
Germany Spain Greece Ukraine
HongKong Sweden Guatemala Venezuela
Ireland Switzerland Hungary Vietnam
Israel Taiwan
Italy UK
Japan US
Lithuania
Uganda—whichisinthetop40oftheoverallIndex—isanothersuccessstorywhenitcomestopainkilleraccess.“In1994,Ugandaintroducedastatutethatallowsproperlytrainednurses,medicalassistantsandclinicalofficerstoprescribeoralmorphine—thatwasveryearlyon,”saystheAPCA’sDrLuyirika.TheUgandangovernment,whichhasring-fencedfundingforthepurchaseofmorphine,supportsthefreeavailabilityoforalmorphineforanyonewhoneedsit.HospiceAfricaUgandahasbecomeacentreofproductionanddistributionofmorphinefortheentirecountrybytakingimportedpowderedmorphineandturningitintoliquid,ororal,morphine.49
Inadditiontomakingthelegislativechangesneededforthistohappen,Ugandahasworkedatotherlevelstopromoteuseofopioids.“It’samuchbiggerprogrammethanjustpolicychange,”saysDrHarding.“Youneedtoworkwithlocalpolice,toeducateclinicianstoprescribe
opioidsandtohelppatientstotakeawaytheirfearofthem.Ugandafocusedonthatchainofeventsandrolleditoutdistrictbydistrict.”
Aswellasenablingpatientstodealwithphysicalpain,animportantroleforpalliativecareistohelppeoplemakeappropriatedecisionswhenfacedwithterminalillness.Thisisgivena15%weightinginthequalityofcarecategory.
Alltoooften,however,notenoughemphasisisgiventotheviewsofthepatientsthemselvesorthoseoftheirfamilies.Andevenincountriesthatscorewellonthisindicator,suchastheUS,whichscores5—indicatingthatdoctorsandpatientsarepartnersincare—somearguethatmoreneedstobedonetosupportpatientchoices.
Thisalsomeanstrainingdoctorsandnursestohavedifficultconversations.DrByockbelieves
We’restillgraduatingwonderful,well-meaningclinicians,whohavenotbeentrainedtohavedifficultconversationsandtoguidepatientsthroughdecisionmakinginsituationsinwhichcureisunlikely.
Ira Byock, executive director and chief medical officer, Institute for Human Caring at Providence Health & Services
43 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Aftermanyyearsofadvocacy,2014markedamajorstepforwardforpalliativecarewhen,atthe67thWorldHealthAssembly(WHA)inMay,thebodyadoptedaresolutiontitled:“Strengtheningofpalliativecareasacomponentofcomprehensivecarethroughoutthelifecourse.”48
“TheWHAresolutionsetsthepolicycontext,legitimisesgovernmentsgettingengagedandprovidesthestimulusforengagement,”saysSheilaPayne,emeritusprofessorattheInternationalObservatoryonEndofLifeCareatLancasterUniversity.
Theresolutioncallsformemberstatestointegratepalliativecareintonationalhealthcaresystems,toimprovetrainingfornursesanddoctorsandtoincreaseaccesstoopioidanalgesics,amongotherinitiatives.ItwasagreedonlargelyasaresultoftheenergeticcampaigningofPanama,alongwithseveralothercountries.“WehavetogivecredittoPanamaandothers,whoputthisontheiragendainGeneva,”saysAndreasUllrich,aseniormedicalofficerforcancercontrolintheWHO’sDepartmentofChronicDiseasesandHealthPromotion.
DrUllrichsaystheresolutionhassignificantimplicationsforthefutureofpalliativecare.First,itraisesglobalawarenessoftheneedforpalliativeservices.Inaddition,itrequests
memberstatestotakeactionandthenreportbackonprogressinimplementingtheirpalliativecareprogrammes.
“Theimportanceofaresolutionisthatit’snotalawortreatybutit’satleastsomethingeverybodyhasagreedon,”hesays.“Andministersofhealthneedtofollowup—theyhavesomekindofmoralobligationtoreportbacktotheWHA.”
However,theresolutionisjustthestartoftheWHO’swork.Taskforceshavebeenestablishedtomonitorlevelsofaccesstoessentialmedicinesandtosupportthedevelopmentofhealthsystemblueprintsandtoolsforpalliativecareservicedelivery.
“Butthebiggestchallengeisthattherearecountrieswherethere’snothing,”saysDrUllrich.Heidentifiesthreecategories:countrieswherenoservicesexistandthereisnouseofopioids;thosewhereservicesneedtobeexpanded;andthosewhereservicesexistbutarenotwellorganised.
Healsostressestheneedtoworkwithhealthprofessionalswhosetrainingandpracticehastraditionallyfocusedonhealingthesickratherthancaringforthedying.“Medicaldoctorsarestilltrainedtocure,”saysDrUllrich.“Sothisisaculturechange.”
The World Health Assembly resolution
moreneedstobedoneinthisrespect.“We’restillgraduatingwonderful,well-meaningclinicians,”hesays,“whohavenotbeentrainedtohavedifficultconversationsandtoguidepatientsthroughdecisionmakinginsituationsinwhichcureisunlikely.”
Researchsuggeststhisishavinganegativeimpactonend-of-lifecare.IntheJournal of Palliative Medicinereport,aboutoneinsevenrespondentsstatedthattheirfamilymemberhadreceivedmedicaltreatmentthattheywouldnothavewanted.
44 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
The2015QualityofDeathIndexrankscountriesbytheirprovisionofpalliativecaretoadults,principallyforreasonsofdataavailability.Thelackofcomparabledataontheprovisionofsuchcaretochildrenreflectsthattheirneedsaretoooftenignoredinthisarea.
“Thisgrouphasbeenmarginalisedovertheyearsandthere’snoreasonforthemtobeleftout,”saysJoanMarston,chiefexecutiveoftheSouthAfrica-basedInternationalChildren’sPalliativeCareNetwork.“Butpeoplearestartingtorealisethatyoucan’texcludechildren—it’sahumanrightsissue.”
Anumberofobstacleshamperthedevelopmentofchildren’spalliativecare.Theirneedsarediversebecauseofthewidelydifferentagegroups,frombabiestoyoungpeople,andthecomplexityoftheirconditionsdemandsmoresophisticatedservices.Also,mostofthedeathstakeplaceinlow-incomecountriesandthedevelopingworld,withfewbeingidentifiedasinneedofcare—particularlyincountrieswithahighHIVburden.
Evenindevelopedcountries,therearechallenges,communicationbeingone.Forwhileitisrelativelyeasytotalktoanadultorayoungpersonaboutsymptomsandpainlevels,thisisharderwith,say,athree-year-oldandimpossiblewithababy,demandingsophisticateddiagnosticskills.
MrsMarstonpointstootherbarriers.“Alotofcliniciansareafraidoflookingafterchildren,becausechildren’scareneedsaresocomplexandbecauseoftheemotionsthatsurroundthefamily,”shesays.
Manyarehesitanttodispenseappropriatepainkillers,too.“Weknowyoucangivemorphinetoanewbornbutyouhavetoworkoutthatdoseverycarefully,”shesays.“Sothere’safearofusingopioids.”
Thishasledtosevereshortfallsintheavailabilityofpalliativecareforchildren.“TheUKhasthebestspreadofchildren’shospiceandpalliativecareservicesbutthey’reonlyreaching25%ofthechildrenwhoneedit,”MrsMarstonsays.
Encouragingly,however,somedevelopingcountriesaremovingaheadrapidlyindevelopingchildren’spalliativecareservices.InMalawi,forexample,children’spalliativecareisnowpartofnationalpolicyandthegovernmenthascommittedtorollingouttrainingintheregions.IntheIndianstateofMaharashtra,children’spalliativecareisalsoincludedinstatepolicyanditsgovernmentissettingasidemoneyforcareprovision.
Inmanyofthesecountries—aswellasinsomeEasternEuropeannationssuchasBelarus,LatviaandPoland—progressondevelopingchildren’spalliativecareishappeningduetotheeffortsofoneorseveralpassionateindividuals.“Ifyoulookatchildren’spalliativecare,you’llalwaysfindthatrightatthebeginning,therewassomeonewhosaid,‘Weneedtodosomethingaboutthechildren,’”saysMrsMarston.
Sheaddsthatlisteningtochildrenthemselvesisalsocritical.“Havingthechildandtheyoungpersontalkabouttheirneeds—that’sreallypowerful.”
Children’s palliative care
45 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Community engagement6Whenitcomestotheendoflife,theroleofthecommunityisimportant.Andwhencommunities,volunteerworkersandfamiliestakeonmoreresponsibilityforcare,itcanreducethecostsassociatedwithhospitalstaysandemergencyadmissions.Thequestionforpolicymakersishowtocreatetheincentivesandsupportsystemsneededtoencouragemorecommunityinvolvement.
Moreover,palliativecareextendsbeyondthemedicaltreatmentofpatients.Forwhiledeathisauniversalhumanexperience,intoday’sworldpeoplefindithardtofaceandarereluctanttotalkaboutdeathanddying.Itisthereforeimportantforcommunitygroupstoraiseawarenessoftheroleofpalliativecareandtoencourageopendiscussionsaboutend-of-lifechoices.
InthiscategoryoftheIndex,twoindicatorsareusedtoassesscountries’performance—publicawarenessofpalliativecareandavailabilityofvolunteerworkersforpalliativecare.Publicawarenesshasaweightingof70%andvolunteerworkers30%.
BelgiumandNewZealandtopthelistinthiscategory,whileFranceandtheUKsharesecondplace(asinthehigh-incomecountrygroup).IntheAmericas,againtheUSandCanadatopthelist.Buthere,BrazilandCostaRicaareinthirdplace.Meanwhile,NewZealandisfirstintheAsia-Pacificgroup,withJapanandTaiwaninposition2,whileUganda,ZimbabweandIsraelarethetopthreeamongMiddleEastandAfricancountries.
InBelgium,forexample,astrongnetworkofvolunteerworkersexists.InNewZealand,whileworkremainstobedone,publicawarenessofpalliativecareandadvancecareplanningisincreasing,whileHospiceNewZealand,whichleadsthecountry’shospicemovement,hasarobustcommunityengagementgoalinitsstrategicplan.
Althoughgovernmentandphilanthropicsupportforpalliativecareclearlyunderpinsthenumberandtypeofservicesonoffer,networksofvolunteerscanhelpextendthereachofthoseservices.Forexample,CostaRicahasdevelopedanextensivenetworkofdaycentresandvolunteerteams.50
AlsooftencitedasdemonstratingthebenefitsofvolunteernetworksistheIndianstateofKerala,whereMRRajagopal,chairmanofPalliumIndia,andSureshKumar,directoroftheInstituteofPalliativeMedicine,havepioneeredcommunity-basedmodelsofpalliativecare.51
However,Kerala,withitslonghistoryofsocialistpoliticsandstrongreligiousinstitutions,isuniquelysuitedtosuchmodels.Thequestionforpolicymakersishowtobuildvolunteernetworksinregionswherethesocio-economicconditionsmaybeverydifferent.“TherearefeaturesofKeralathatareatypical,”saysDrPayne.“IverymuchadmirewhathappensinKerala,butmyconcernisthatitdoesnotspread.”
46 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
ShecitesSpainandColombiaashavingmodelsthatcouldbereplicated:throughrelativelynewlegislationColombiaisimplementingamodelofpalliativecarethatintegratessocialsupportandhealthcare.Spain,meanwhile,scores4onthesecondindicatorinthiscategory,meaningitgenerallyhassufficientvolunteerworkerstomeetthecountry’sneedsandthatsomeofthesereceivetrainingandareinvolvedinfundraising.
Insomecases,legislationcanactasabarriertovolunteerwork.InFrance,forexample,whilethreeinstitutesoffertrainingtovolunteers,regulationsmeanpalliativecareunitsmustestablishaformalconnectionwithvolunteerassociationsandvolunteersarelimitedinwhattaskstheycanperform.“It’shardtobeavolunteer,”saysDrdelaTour.“Thetrainingistoolongandtherearemanythingstheycan’tdo.”Shecitesactivitiessuchasorganisingbirthdayparties,makingflowerarrangementsordoingtheshopping.“Andahospicewithagardencan’thavevolunteersdoingthegardening,”sheadds.
Communityeffortsarealsoimportantwhenitcomestoraisingawarenessofpalliativecareandtoencouragemorepeopletotalkaboutdeathanddying.Thisisthegoal,forinstance,oftheDyingMattersCoalition,a30,000-memberbodyestablishedin2009bytheUK’sNationalCouncilforPalliativeCare.Itaims“tohelppeopletalkmoreopenlyaboutdying,deathandbereavement”,andtomaketheseissues“acceptedasthenaturalpartofeverybody’slifecycle.”ItdoessothroughcommunityactivitiesandeventsandthedistributionofresourceslikeDVDs,postersandleaflets,aswellasitswebsite.52
Moreinformally,inagrowingnumberofcountriesamovementcalledDeathCafésoffersmeetingsoverteaandcakeswhereparticipantscanholdopenconversationsondeathandsharetheirideasandconcernswithothers.
Community engagement (10% weighting)
Figure 6.1
Rank Country
MyanmarDominican Republic
BotswanaIran
VietnamTurkey
Saudi ArabiaRomania
IraqGhana
EthiopiaCuba
ColombiaBulgaria
BangladeshUruguayThailand
Sri LankaRussia
Puerto RicoPhilippines
PeruNigeria
MoroccoMexico
MalaysiaMalawi
LithuaniaKenya
KazakhstanIndia
GuatemalaEgypt
EcuadorCzech Republic
ChinaVenezuela
TanzaniaPanama
IndonesiaHong Kong
GreeceArgentina
HungaryZambia
SpainSouth Africa
JordanUkraineSweden
SlovakiaMongolia
IsraelChile
ZimbabweSingapore
PortugalCosta Rica
BrazilUganda
SwitzerlandPoland
ItalyFinland
DenmarkAustria
South KoreaUS
NorwayNetherlands
CanadaAustralia
TaiwanJapan
IrelandGermany
UKFrance
New ZealandBelgium
0007.5
17.517.517.517.517.517.517.517.517.517.517.5
25.025.025.025.025.025.025.025.025.025.025.025.025.025.025.025.025.025.025.025.025.0
32.532.532.532.532.532.532.535.0
40.040.040.040.042.542.542.542.542.542.5
50.050.050.050.050.0
57.557.557.557.557.557.557.5
65.075.075.075.075.075.0
82.582.582.582.5
92.592.5
100.0100.0
=78=78=78
77=66=66=66=66=66=66=66=66=66=66=66=45=45=45=45=45=45=45=45=45=45=45=45=45=45=45=45=45=45=45=45=45=38=38=38=38=38=38=38
37=33=33=33=33=27=27=27=27=27=27=22=22=22=22=22=15=15=15=15=15=15=15
14=9=9=9=9=9=5=5=5=5=3=3=1=1
47 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Figure 6.2: Public awareness of palliative care5 4 3 2 1
Publichasastrongunderstandingandawarenessofpalliativecareservices.Informationonpalliativecareisreadilyavailablefromgovernmentportalsandcommunitymechanisms.
Publichasasomewhatgoodunderstandingandawarenessofpalliativecareservices.Someinformationonpalliativecareisavailablefromgovernmentportalsandcommunitymechanisms.
Publichasamediocreunderstandingandawarenessofpalliativecareservices.Limitedinformationonpalliativecareisavailablefromgovernmentportalsandcommunitymechanisms.
Publichasalimitedunderstandingandawarenessofpalliativecareservices.Littletonoinformationonpalliativecareisavailablefromgovernmentportalsandcommunitymechanisms.
Publichasnounderstandingorawarenessofpalliativecareservices.Thereisnoinformationonpalliativecareavailablefromgovernmentportalsandcommunitymechanisms.
Belgium NewZealand Australia Netherlands Austria Poland Argentina Malawi Botswana IranFrance UK Canada Norway Brazil Portugal Bangladesh Malaysia Dominican Myanmar
Germany Taiwan Chile Singapore Bulgaria Mexico RepublicIreland US CostaRica Slovakia China MoroccoJapan Denmark SouthKorea Colombia Nigeria
Finland Sweden Cuba PanamaHungary Switzerland Czech PeruIsrael Uganda Republic PhilippinesItaly Ukraine Ecuador PuertoRicoMongolia Zimbabwe Egypt Romania
Ethiopia RussiaGhana SaudiArabiaGreece SouthAfricaGuatemala SpainHongKong SriLankaIndia TanzaniaIndonesia ThailandIraq TurkeyJordan UruguayKazakhstan VenezuelaKenya VietnamLithuania Zambia
ThechallengeistoscaleupinitiativessuchasDeathCafés.“It’satinypartofthepopulationaccessed,andmainlythecognoscenti,”saysAustralia’spalliativecareadvocateYvonneMcMaster.DrSleemanagrees.“Themorewetalkabouttheissueinsocietythebetteritwillbe,”shesays.“ButthepeoplewhogotoDeathCafésarepeoplewhochoosetogotoDeathCafés,nottheaveragemanonthestreetwhowouldnothaveaconversationondeathanddying—that’sthepersonyoureallyneedtoengage.”
IntheUS,whichscores4outof5onthepublicawarenessindicator(Figure6.2),anumberofinitiativesareworkingtoencouragemore
frequentandmeaningfulconversationsaboutdeathandtheendoflife.
BasedintheUS,theConversationProject—foundedbyEllenGoodmanandLenFishmanandworkingincollaborationwiththeInstituteforHealthcareImprovement—helpspeopletalkabouttheirwishesforend-of-lifecare.Itproducesfreestarterkitsthataredownloadablefromitswebsiteandofferguidanceonhowtoinitiateaconversationondeath.“Wewantyoutobetheexpertonyourwishesandthoseofyourlovedones,”thewebsitetellsusers.“Notthedoctorsornurses.Nottheend-of-lifeexperts.You.”
48 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
Whilethevoicescallingformoreandbetterpalliativecarearegrowinglouder,soarethoseadvocatingfortherighttodie.Bothcampswouldarguethattheyaresupportingabetterqualityofdeath.Yetthoseworkinginpalliativeandhospicecarearguethatlegalisingassistedsuicideshouldnotbeseenasanalternativetogoodpalliativecare.
Insomecountries,grantingcitizenstherighttodieisontheagenda.Aroundtheworld,lawmakersareconsideringorintroducinglegislationtoallowterminallyillpatientstotaketheirownlives.
InFebruary2015,forexample,Canada’ssupremecourtruledthatadultssufferingextreme,unendingpainwouldhavetherighttodoctor-assistedsuicide.53IntheUK,theAssistedDyingBillwasdefeatedinparliamentinSeptember2015,despitesomepollsshowingamajorityofthepublicsupportedit.54AndinAustralia,somestatesandterritorieshavebeenconsideringintroducinglegislation,whileafederalbillonassistedsuicidehasbeendrafted.“It’saveryactivespace,”saysMsCallaghanofPalliativeCareAustralia.
Insomeplaces,suchlegislationhasexistedformanyyears.IntheUS,forexample,thestateofOregonhasalloweditscitizenstotakeself-administeredlethalmedicationsprescribedbyadoctorsince1997undertheDeathWithDignityAct(DWDA).55ThestateofWashingtonpassedasimilarlawin2008,56asdidVermontin2013.57
InEurope,meanwhile,Switzerland’slawpermittingassistedsuicidehasbeeninforcesince1942.58In2014,Belgiumextendedits2002euthanasialawtochildren,59whileintheNetherlandslegislationthatwentintoeffectin2002wentastepfurther,permittingbothassistedsuicideandeuthanasiaundercertainconditions.60,61
Butwhiletherighttodieisarealityinsomecountriesandthesubjectofdebateinmanyothers,advocatesforpalliativecarearguethatthisreflectsaninabilitytocareadequatelyforpeopleattheendoftheirlives.“Euthanasia
isnotasubstituteforpalliativecare,”saysMsCallaghan.
Increasingdebateaboutassisteddyingrepresentsafailureforthefield,saysDrByock.“Thereasonthatassistedsuicidelawsarepollingsowellthesedaysisthatthepublichasawelloffear,angeranddistrustaboutthecaretheywillreceiveandhowtheyandtheirfamilieswilldie,”hesays.“Andthehardtruthisthatthisiswellfounded.”
InhisbookBeing Mortal,writerandsurgeonAtulGawandesuggeststhatthehighnumberofpeopleseekingassistedsuicideintheNetherlandsisnotameasureofsuccess.“Ourultimategoal,afterall,isnotagooddeathbutagoodlifetotheveryend,”hewrites.62
Ofcourse,therewillalwaysbecaseswherepalliativecarecannotendsuffering.DrGawandegoesontosayhewouldsupportlawspermittingprescriptionsallowingpeopletoendtheirliveswhensufferingattheendoflifeisunavoidableandunbearable.
And,asDrGawandeargues,givingpeopletheoptioncanalleviatetheiranxiety,eveniftheyneverusethelethalmedications.BarbaraCoombsLee,presidentofCompassion&Choices,aUS-basednon-profitorganisationthatpushesforgreaterpatientchoiceattheendoflife,agrees.“Itbestowsenormouspeaceofmind,”shesays.“It’sknowingit’stherethatistheprimaryimpact.”
ItistellingthatinOregon,forexample,thenumberofrecipientsofDWDAprescriptionsisalwayssubstantiallyhigherthanthenumberofdeathsresultingfromthedrugs.63“Therewillstillbepeopleforwhomthisisaboutcontrolandthatisnevergoingtochange,”saysDrTulskyoftheDana-FarberCancerInstitute.
However,DrTulskyarguesthatmostpeoplewhoreceivegoodpalliativecarewillnotchoosetohastentheirdeath.“Ingeneral,ifyoucanmanagethesymptomsandthesocialandpsychologicalissuesthatcomeupattheendoflife,itshouldnotbenecessary.”
Palliative care and the right to die
Thereasonthatassistedsuicidelawsarepollingsowellthesedaysisthatthepublichasawelloffear,angeranddistrustaboutthecaretheywillreceiveandhowtheyandtheirfamilieswilldie.Andthehardtruthisthatthisiswellfounded.
Ira Byock, executive director and chief medical officer, Institute for Human Caring at Providence Health & Services
49 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Ranking palliative care across the world
TaiwanranksnearthetopoftheQualityofDeathIndex,comingfirstinAsiaandsixthoverall.Itshighpositionistheresultofanumberoffactors.Firstly,theavailabilityofpalliativeserviceshassteadilygrowninrecentyears,withhospiceprogramsincreasingmorethan50%to77programsduring2004to2012,andhospital-basedpalliativecareteamsmultiplyingfrom8to69.64Taiwanranksfifthoverallinthepalliativeandhealthcareenvironmentcategoryasaresult.Inhumanresourcestermsitalsodoeswell:inadditiontoanincreaseinpalliativecareteams,othermedicalspecialistsinrelatedfieldssuchasnephrologyorneurologyarereceivingtrainingonpalliativecareandnowincorporateitintotheirtreatmentplans.
Palliativecareservicesarealsoaffordable:Taiwanhasthesecond-highestscoreinthiscategory(togetherwithahostofrichercountries).Taiwan’sNationalHealthInsurance(NHI)systemplaysacentralroleintheprovisionofpalliativecare,bydetermininginsurancecoverageandthelevelofreimbursementforspecificservices.Whilepreviouslyonlycancerpatientswereeligible,inthelastfiveyearscoveragehasbeenextendedtoincludeseveralothertypesofillness,andreimbursementlevelshaveincreasedforbothhomevisitsandhospital-basedcare,providingmoreincentiveforinstitutionstoofferpalliativecare.
ThequalityofpalliativecareinTaiwanishigh(itistiedforeighthplaceinthiscategory),withafocusonimprovingthequalityofapatient’slastdays.Majorstepshavebeenmadeinrecentyears:DrSiewTzuhTang,aprofessoratChangGungUniversitySchoolofNursing,reportssubstantialimprovementinseveralend-of-lifeindicatorsbetweenherteam’snationalsurveysin2003/4and2011/12.Forexample,whilelessthanhalfofterminallyillcancerpatientswereawareoftheirprognosisinthefirstsurvey,thisnumberincreasedto74%by2012.Useofaggressivemedicaltreatmentsforcancerpatientsinthelastmonthoflife,suchasCPRandintubation,alsodeclinedoverthisperiod.
Communityengagement,inparticulartobreakdownculturaltaboosagainstdiscussingdeath,hasalsobeenafocus.Suchtaboosarestillwidespread,butproponentsofpalliativecareareattemptingtochangethatbyintroducingdiscussionsoflifeanddeathintotheeducationsystemfromprimaryschoolthroughuniversity,andbychangingthemindsetofpatients.
“FamilymembersfeelthatforthepatienttodiewithoutCPRisnotfilial,”saysDrRongchiChen,chairmanoftheLotusHospiceCareFoundation.“Butwearetryingtoteachpeoplethatfilialdutyandloveshouldfinditsexpressioninbeingwiththefamilymemberattheendofhisorherlife,andinencouragingacceptanceofdiseaseandpeacefulpassing.”
AccordingtoChing-YuChen,professoremeritusatNTUHospital,oneofTaiwan’sinnovationsintheareaofpalliativecarehasbeentheemphasisonspiritualcareasevenmoreimportantthansymptommanagement.OrganisationsliketheLotusHospiceCareFoundationhaveprovidedtrainingforBuddhistmonksandnunstoprovidespiritualsupportaspartofpalliativecare.DrRongchiChenestimatesthataround70%ofTaiwan’spopulationidentifyasBuddhist,andreportsverypositiveresponsesbypatientsandtheirfamiliestothepresenceofBuddhistchaplains.
A glimpse of the future of palliative careTaiwanisalsoapioneerintechnologicaladvancestoimproveefficiencywhileenhancingpatientrightsandpalliativecareexperience.Totakeoneexample,allTaiwanesecitizenshaveaninsurancecardwiththeirmedicalinformation,andelderlypatientsareencouragedtomakespecificend-of-lifedecisionsabouttheirwishesintheeventthata“donotresuscitate”(DNR)decisionneedstobemade.Thisinformationisthenlinkeddirectlytotheirinsurancecard,sothatregisteringatanyhealthcarefacilitybringsupthisinformation.
TzuchiUniversityHospitalhasalsopilotedaninnovativeprogramforremotemonitoringofpalliativecare,usingsmartphonesandtabletsasaplatformfortrackingpatients’
Case study: Taiwan—Leading the way
Rank/80 Score/100
Quality of Death overall score (supply) 6 83.1
Palliative and healthcare environment 5 79.6
Human resources 9 72.2
Affordability of care =6 87.5
Quality of care =8 90.0
Community engagement =5 82.5
Palliative andhealthcare environment
Humanresources
Affordability of careQuality of care
Communityengagement
Taiwan
Average
Highest
0
20
40
60
80
100
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The 2015 Quality of Death Index Ranking palliative care across the world
medicalconditionsandforenablingcommunicationbetweencaregiversandmedicalspecialiststhroughSkype.Theplatformalsoincludesonlinecareinstructionsandcommunityresources,andisavailableinsixdifferentlanguagestoensurethatforeignhealthaidesarealsoabletousetheservice.DrYingweiWang,chiefoftheHeartLotusHospiceatTzuchiGeneralHospital,reportsthattheoutcomesandcaregiverfeedbackhavebeenverypromising,andexpectsthattheprogramwillbeexpandedincomingyears.
Theuseofnewplatformsiswelcomedintech-savvyTaiwan,
andthiskindofinnovationwillbeessentialtokeeppacewiththehealthcareneedsofTaiwan’sageingpopulation.“Theproportionofourpopulationover65hasdoubledfrom7%to14%injust20years,”saidDrWang,withmanyelderlypatientslivinginruralareaswithlimitedaccesstopalliativecare.Effortstoprovidecommunityhospitalswithadditionaltrainingandaccesstopalliativecareexpertsareunderway,includinganationwidebi-weeklyconferencecallthatlinkspalliativecarepractitionerstosharetheirexperiencesanddiscussrecentcases.
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The 2015 Quality of Death Index Ranking palliative care across the world
The 2015 Quality of Death Index—Demand vs supply7
Indebatesabouthowtoimprovecarefordyingpeopleandthoselivingwithincurablenon-communicablediseases,healthcareprovidersandpolicymakersarefocusedonincreasingtheavailabilityandqualityofcare.However,whileindividualprogrammesmaystandout,thesuccessofcountriesinmeetingtheneedsoftheircitizensalsodependsonacriticalfactor:thesizeofthegapbetweendemandandsupply.
Forthisreason,animportantcomponentofthe2015QualityofDeathIndexisanewdemandsection,whichanalysescountries’relativeneedforpalliativecare.WhilethesupplyIndexisbasedontwentyindicatorsinfivecategories,thedemandanalysisisbasedonthreeindicators:
• Theburdenofdiseasesforwhichpalliativecareisnecessary(60%weighting)
• Theold-agedependencyratio(20%)
• Thespeedofageingofthepopulationfrom2015-2030(20%)
Giventhatpatientswithcertaindiseasesaremorelikelytorequirepalliativecare65,thefirstindicatormeasurestheburdenofthosediseasesforeachcountry.Thisisgiventhehighestweightingconsideringitsimportanceintheliteraturearoundpalliativecare:prevalenceofdiseasessuchascancerandAlzheimer’swilldrivedemandforpalliativecareservices.Thesecondandthirdfactorstakeintoaccountthatpalliativecarewillbemoreurgentlyneededtheolderapopulationis,andthemorerapidlyitis
likelytoage.Theseage-relatedindicatorsaregivenequalweightandimportance.
TakingtheresultsoftheheadlinesupplyIndexandmappingthemagainsttheresultsofthedemandanalysis(Figure7.1),itispossibletogainapictureofwherethegreatestgapsinpalliativecareprovisionexistworldwide.Countriesinthetopright-handcornerofthechart—suchasAustralia,NewZealand,theUK,theNetherlandsandCanada—havehighdemandbutalsorelativelygoodprovision.Forthem,thegapisnarrowest.
Thoseinthebottomleft-handcornerofthescattercharthavelowprovisionbutalsolowdemand.Mostworryingarethosecountriesontheright-handsideofthechart(indicatingthatdemandishighest)butthatdolesswellwhenitcomestoprovision.TheseincludeBulgaria,Cuba,GreeceandHungary—and,inthemoststrikingcase,China.
Chinaisoneofthefewlowerincomecountrieswithhighdemandforpalliativecare,partlyduetorisingincidenceofconditionssuchascardiovasculardisease,withthisaccountingforone-thirdofalldeathsinChinain2012.66 Moreover,China’sdemographicprofile,withmorethan13%ofthepopulationexpectedtobeaged65oroverby2020accordingtoEIUestimates,comparedto11%globally(and6%inIndia),impliesgreaterneedforpalliativecare—andhealthcareingeneral.“China’sageingpopulationwillbeaseriouschallenge
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The 2015 Quality of Death Index Ranking palliative care across the world
forthehealthsystem,”saysNingXiaohong,anoncologistatPekingUnionMedicalCollegeHospital.
“Palliativecareisnottheonlytreatment[neededby]theageingpopulation,”saysChengWenwu,directoroftheDepartmentofPalliativeCareatFudanUniversityCancerHospital.“Butasincreasingdemandformedicalcare[duetotheageingpopulation]placesaburdenonclinicsandhospitals,palliativecarefacilitieswillbeneededtohelprelievesomeofthatpressure.”
Lookingatcountriesontheleftsideofthechart,inspiteoftheirrelativelylowcurrent
demand,manywillalsoneedtoworkhardtomeetrisingfutureneedastheincidenceofnon-communicablediseaseincreasesandtheirpopulationsgrowolder.Thedemographicageingprocessisfastestamongdevelopingcountries.Ofthe15countriesthatnowhavemorethan10millionolderpeople,sevenaredevelopingcountries.67
InNigeria—nearthebottomofthedemandanalysis—thechallengeisthecountry’ssize,saysDrLuyirika.“Nigeriahasaverybiganddiversepopulationandit’sabigcountrytoo,sotomakeanimpact,theyneedtomorethantripletheirefforts,”hesays.“Therearelotsof
Palliative care demand vs supply
Figure 7.1
Good
pro
visi
onPo
or p
rovi
sion
Low demand for palliative care High demand for palliative care
Qual
ity
of d
eath
ove
rall
scor
e(S
uppl
y)
Demand
Ghana Tanzania
EthiopiaKenya
India
Guatemala
MyanmarPhilippines
Iraq
Peru
MexicoVenezuela Brazil
Sri LankaColombia
Dominican Republic
UkraineRomania
MoroccoThailand
Malaysia
Panama
Ecuador
Mongolia
Lithuania
Costa Rica
Chile
Israel
Hong Kong
Taiwan
Portugal
Cuba
Greece
Hungary
Czech Republic
Poland
Spain
Japan
South Korea
SingaporeNorway
US
Belgium France
Sweden Switzerland
Germany
UK Australia
New ZealandIreland
Netherlands
Canada
AustriaDenmark
ItalyFinland
China
Argentina
Jordan Uruguay South Africa
Turkey
SlovakiaBulgaria
Botswana
Indonesia
Vietnam
ZimbabweKazakhstan
Russia
ZambiaSaudi Arabia
Egypt
Malawi
Iran
Bangladesh
Nigeria
Uganda
Puerto Rico
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The 2015 Quality of Death Index Ranking palliative care across the world
initiativesthatarehappeningbutbecauseofthehugepopulation,it’sdifficulttosaytheyaremakingprogress.Thecoverageisstillverylow.”
Ingeneral,incountrieswithlowdemand,thisstateofaffairsischangingrapidly.Asoverallhealthcareprovisionimprovesandpeoplelivelongerandtheincidenceofnon-communicablediseasesrises,demandforpalliativecarewillonlyincreaseinyearstocome.InSub-SaharanAfrica,forexample,theWorldHealthOrganizationexpectstheincidenceofcancertoincreaseby127%andcardiovasculardiseases(includingstroke)toincreaseby105%between2012and2030.68
Ofcourse,itisworthrememberingthatevenincountrieswherehighdemandisbeingmetby
high-qualityservices,thepictureiscomplex.“IntheUK[whichisinthetopbracketofthedemandanalysis],wearepolishingthebrass—we’vegotgoodcareandwe’redoingwell,”saysDrSleeman.“ButthenIspendalotoftimesayingwe’renotdoingenough,thepopulationisageingandwe’respendingtoomuchmoneyonthingsthatdon’timprovepeople’soutcomesatall.”
AndwhileheistalkingaboutthesituationintheUS—whichisalsonearthetopintermsofdemand—thecommentsofDrByockcouldbeappliedworldwide.“Thetimeforincrementalchangeisover,”hesays.“Andwe’dbetterhurrybecausewiththeageingofthepopulationandthecontinuedgrowthofchronicillness,thetrendsarenotinourfavour.Wehavetomoveswiftly.”
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The 2015 Quality of Death Index Ranking palliative care across the world
Conclusion
Asseismicdemographicshiftsbringhomethescaleofthechallengesfacinggovernmentsinprovidingforageingpopulations,palliativecarehasrisenuptheagendasincetheEIUpublisheditsfirstQualityofDeathIndex.Ofcourse,changesinthemethodologyoftheIndexsince2010,aswellasanincreaseinthenumberofcountriesincluded,meanitisnotpossibletomakedirectcomparisons.However,itisclearthatsomecountriesaresteppinguptheireffortstoensureallcitizenshaveaccesstopalliativecare.
Forexample,Japan,whichperformedrelativelypoorlyinthe2010Index,isnowatposition14,reflectingrecentinitiativessuchasitsincreasedattentiontopalliativecareforcancerpatients.Andwhilein2010,theIndianstateofKeralawasalonelybeaconofhopeinacountryotherwisefailingtoprovideitscitizenswithsuitablepainkillersandpalliativecare,initiativesareemerginginotherpartsofthecountry,whilerecentlegislativechangeswillmakeitconsiderablyeasierforIndianphysicianstoprescribemorphine.
Otherpromisingpolicyadvanceshavebeenmadesince2010,suchasColombia’s2014palliativecarelaw,forexample.InPanama,thereisoptimismthatlegislativechangeswillpavethewayforthecreationofamedicalspecialty
inpalliativecareandeasieraccesstoopioids.AndtheWorldHealthAssemblyresolutiononpalliativecarecreatesapowerfulincentiveforallmemberstatestodeveloppalliativecarepolicies.
Nevertheless,itshouldnotbeforgottenthatformostcountries—eventhosethatoccupythehighestranksoftheIndex—muchworkremainstobedonetoensurethatthoseinneedofcarearenotneglected.Andinmuchofthedevelopingworld,accesstopalliativecareiseitherararityornon-existent.
Forwealthynationswithsophisticatedhealthcareservices,thechallengeismovingfromacultureofcuringillnesstomanaginglong-termconditions.Insteadofviewingpalliativecareasacostcentre,asisoftenthecaseintheUS,greaterrecognitionisneededoftheeconomicbenefitsofpalliativecareintermsofreducedhospitalstaysandavoidedemergencyroomvisits.
Indevelopingcountries,ageingpopulations,rapidurbanisationandincreasinglyunhealthylifestylesmeanhealthcaresystemsmustcopewithrisingratesofchronicdiseasesuchaslungcanceranddiabeteswhiletheystillbattleagainstchildandinfantmortalityandinfectiousdiseases.
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The 2015 Quality of Death Index Ranking palliative care across the world
Butwhilethechallengestheyfacemaybedifferent,anumberofcrucialinterventionscouldhelpallcountriesimprovethequalityofcareandmakeitavailabletogreaternumbersofpeople.Theseinclude:
• Creatingalegislativeframeworkthatprovidesforeasieraccesstopainkillerssuchasopioidsandtraininghealthcareworkerstoadministerthesedrugs
• Creatingmechanismsthatmakepalliativecaremoreaffordableforthosethatneedit
• Integratingsomelevelofpalliativecaretrainingintotheeducationofallhealthcareprofessionals
• Increasingaccesstohome-andcommunity-basedpalliativecare
• Providingsupportforthefamiliesandvoluntaryworkerswhocanextendaccesstocare
• Increasingpublicawarenessofpalliativecare
• Encouragingmoreopenconversationsaboutdeathanddying
Whileeducationandtrainingclearlyinvolveinvestment,notalltheseinterventionsnecessarilyrequiresubstantialexpenditure.And,asstudieshavefound,palliativecarecanbehighlycosteffectivewhencomparedwiththealternatives.
Asfargreaternumbersofpeoplelivelongerbutwithoneormoreconditions—requiringcomplextreatments—palliativecarecaneasetheburdenonhealthcaresystemsandreducepainandsufferingfortheindividual.Thereisevenevidencetosuggestthatpalliativecarenotonlyenhancesqualityoflife—insomecases,suchaslungcancerandend-stagebreathlessness,itcanevenextendlife.69,70
Whetheritistocutcosts,increasequalityoflifeorimprovepatients’survival,developingpalliativecareservicesshouldbeapriorityforeveryhealthcaresystemworldwide.Countrieswillneedtoactfast.Giventheinevitableincreaseindemand,ifgovernmentsarenottobecomenegligentinmeetingtheneedsoftensofmillionsofindividualsandfamiliesgoingthroughwhataredifficultandpainfulexperiences,abusiness-as-usualapproachwillnolongersuffice.
56 © The Economist Intelligence Unit Limited 2015
The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ
What is the Quality of Death Index? Why was it developed?In2010TheEconomistIntelligenceUnit(EIU)developedanIndexthatassessedtheavailability,affordabilityandqualityofend-of-lifecarein40countries.Thestudy,commissionedbytheLienFoundation,wasthefirstthatobjectivelyrankedcountriesintheprovisionofpalliativeandend-of-lifecare.Thestudygarneredmuchattentionandsparkedaseriesofpolicydebatesaroundtheworld.Asaresult,theLienFoundationcommissionedanewversionoftheIndextoexpanditsscopeandtakeintoaccountglobaldevelopmentsinpalliativecareinrecentyears.
TheQualityofDeathIndexwasdevelopedasapolicy-focusedtooltocomplementandexpandontheexistingliteraturearoundpalliativecare.Itistheonlystudythatranksthequalityofprovisionofpalliativecareatthecountrylevel.Sinceitsfirstpublicationin2010therehavebeenseveralregionalandglobalstudiesassessingpalliativecare.TheresearchwiththelargestcoverageofcountriesistheGlobal Atlas of Palliative Care at the End of Life(2014)71,developedbytheWorldHealthOrganizationandWorldwideHospicePalliativeCareAlliance.Thestudyoutlinesglobalneedforpalliativecareandbarrierstoitsdevelopment,andclassifies234countriesinfourmajorgroupsofpalliative
caredevelopment(ratherthanindividually).OtherinfluentialresearchstudiesincludetheEAPC Atlas of Palliative Care in Europe(2013)72,developedbytheEuropeanAssociationforPalliativeCare,whichoutlinesservices,policiesandstrategiesin53Europeancountries,andtheAtlas of Palliative Care in Latin America (2012,2015)73whichpresentsthepalliativecaresituationin19LatinAmericancountries.
The2015QualityofDeathIndexhasseveraldistinctionsfromthesepapers:itiswiderinscopethantheregionalstudiesandmorein-depthinitsmethodologycomparedtotheGlobalAtlasofPalliativeCareattheEndofLife.The2015QualityofDeathIndexalsooffersanobjectiveframeworktocompareandrankpalliativecaredevelopmentsin80countries.Nootherstudyrankssuchanextensivelistofcountries:theIndexcovers85%oftheworld’spopulationand91%ofthepopulationagedabove65.
What does the 2015 version of the Index cover? Inthe2010version,wefocusedonend-of-lifecareforadults.Inthisversionwehaverevisedthescopetorefertopalliativecareforadults.Palliativecare,whichtheWHOdefinesastheapproachtoimprovingthelivesofpatientsfacinglife-threateningillness,hasawiderscope
Appendix I: Quality of Death
Index FAQ
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The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ
thanend-of-lifecare.End-of-lifecaretypicallyreferstocareinthelastdaysofapatient’slife.
Researchforthe2015Indexalsoincludesanalysisofdemandforpalliativecare,whichoffersanopportunitytostudywheregapsbetweenprovisionandneedforpalliativecareismostpressing.TheresultsofthisdemandanalysisarepresentedseparatelyinPart7ofthepaper.
How different is the 2015 Index from the 2010 version? Inthe2015versionthenumberofcountriesincludedhasbeenincreasedfrom40to80.TheIndexisalsostructureddifferentlyfromthe2010version.
IndevelopingtherevisedframeworktheEIUconductedanin-depthliteraturereviewandconsultedanexpertpanelofadvisors.Basedontheirfeedbackandpalliativecaredevelopmentsinthelastfiveyears,wehaveremovedsomeindicatorsforwhichdatawasnotuniformlyavailableorreliable(suchasaveragepaymentbypatientforend-of-lifecare);addednewones(suchasavailabilityofpsychosocialsupportforpatientandfamilies,whichhadgainedimportanceintheliterature);andrefinedthescoringmethodologyinothers(forexample,theindicatoraroundtheexistenceofagovernmentpolicynownotonlyassesses
presenceofapolicy,butalsotheeffectivenessofitsimplementation).The2010versionrankedcountriesbasedon24indicatorsinfourcategories;the2015versionranks80countriesbasedon20indicatorsinfivecategories.
Asthetwoversionsaredifferentinscopeandframework,directcomparisonsofacountry’srankingbetween2010and2015arenotpossible.
Why do we have five categories in assessing palliative care? Inourliteraturereviewandconsultationwithourexpertadvisorypanel,andbuildingfromthe2010Index,theEIUresearchteamfoundthatseveralkeythemeswerecrucialintheprovisionofthepalliativecareenvironment(seetablebelow).
Refertothefullmethodologybelowfordescriptionsofindicatorsineachcategory,datasources,thedatanormalisationprocessandthescoringcriteriaforqualitativeindicators.
What is the demand analysis?Thedemandanalysisassessescountriesontheirneedforpalliativecarebasedonthreeindicators:burdenofdiseasesthatoftenrequirepalliativecare,theproportionofelderlyinacountryandhowquicklythisproportionofelderlyischanging.Forthefirsttimeinpalliativecareresearch,ourIndexanalysestheprovisionof
Category JustificationPalliativeandhealthcareenvironment Thiscategoryincludesindicatorsassessingthegeneralpalliativeand
healthcareenvironment,aswelltheexistenceofawell-articulated,effectiveandwidelyimplementedgovernmentstrategy.
Humanresources Trainedspecialists,medicalprofessionalsandsupportstaffarekeyinensuringavailableservicesaredeliveredinaprofessionalandhigh-qualityfashion.
Affordabilityofcare Wherecareisavailable,itneedstobeaffordable.Inthiscategoryweassesspublicfundingaswellasout-of-pocketexpensesforaccessingpalliativecare.
Qualityofcare QualityofcareisthemostimportantcategoryintheIndex.Itassessesvariousdimensionsofquality,includingtheavailabilityofstrongopioidanalgesics(morphineandequivalents),monitoringstandardsinorganisationsandtheavailabilityofservicessuchaspsychosocialsupportforpatientsandtheirfamilies.
Communityengagement Theroleofthecommunityisimportantinpalliativecare,especiallyasvolunteerworkersarevitalintheprovisionofcare.Inthiscategory,weassesstheavailabilityandtrainingforvolunteerworkers,andpublicawarenessofpalliativecare.
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The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ
palliativecare(or“supply”environment)inthecontextof“demand”forpalliativecare.Thisoffersauniqueopportunitytoidentifycountrieswherepolicychangeandpalliativecaredevelopmentismostpressing.
SeethefullmethodologyinAppendixIIfordescriptionsofdataused,sourcesandassessmentcriteria.
How was the Index constructed? Usingthe2010versionoftheIndexasabaseline,wefirstconductedanin-depthreviewofdevelopmentsinpalliativecareinthepastfiveyears.Wealsoconsultedwithourexpertadvisorypanel,whichincluded:
• CynthiaGoh,chair,AsiaPacificHospicePalliativeCareNetwork
• StephenConnor,seniorfellow,WorldwideHospicePalliativeCareAlliance
• LilianadeLima,executivedirector,InternationalAssociationforHospiceandPalliativeCare
• EmmanuelLuyirika,executivedirector,AfricanPalliativeCareAssociation
• SheilaPayne,emeritusprofessorattheInternationalObservatoryonEndofLifeCareatLancasterUniversity
IncollectingdatafortheIndex,wereviewedplans,policiesandacademicpapersforeachcountry,andconductedinterviewswithin-countryprofessors,medicalprofessionalsandotherexperts.Ourinterviewshelpedtriangulateinformationderivedfromdesk-basedresearch.
TheIndexconsistsofqualitativeandquantitativeindicators.Forqualitativeindicators,ourEIUresearchteamdevelopedaframeworktoscorecountries,usuallyonascaleof1-5(where1=worstand5=best).Wethenconsultedourexpertadvisorypanelonweightsforindicatorsandcategories,aswellastoreviewIndexfindings.
Dataforindicatorsarenormalisedonscaleof
0-100;thatis,themaximumvalueforanyoneindicatorbecomes100andtheminimum0,andvaluesinbetweenareturnedintoappropriatescoresonthatscale,likepercentages.Thesevaluesaremultipliedbytheirassignedweightsandaddedtogethertogetthecategoryscores.Theneachcategoryscoreismultipliedbyitsweightandthenaddedtogethertogettheoverallscore.
TheresultsoftheIndexarethesoleresponsibilityoftheEIU.
What are the limitations of the Index? TheIndexassessesthequalityandavailabilityofpalliativecareservicesforadultsonly.Palliativecareforchildrenisequallyimportant,butapaucityofdatamakessuchanalysisdifficult.
Intermsofindicators,wefaceddatalimitationsinourassessmentsaroundhumanresourcesandavailabilityofservices.IntheHumanResourcescategory,ideallywewouldhaveconsideredtheavailabilityofdoctorsandnursesworkingprimarilyinpalliativecare.Suchdata,however,isnotwidelyavailable.Instead,weuseddataontotalnumberofdoctorsandnursescollectedbytheWorldHealthOrganization.
InthePalliativeandHealthcareEnvironmentcategory,datafor“Capacitytodeliverpalliativecareservices”wasnotavailableforanumberofcountries.Asaproxy,thisindicatormeasuresthepercentageofpeoplewhodiedfrompalliativecare-relateddeathsinacountryinoneyearthatwouldhavebeabletoreceivepalliativecare,giventhecountry’sexistingresources.Weuseanestimationofthecapacityofpalliativecareservicesavailable,basedonWHPCAdata,anddividebythenumberofdeathsinagivenyear.
Forqualitativeindicators,wescoredcountriesbasedonpolicies,plansanddevelopmentsupuntilDecember2014.Thismeantthatnewdevelopmentsin2015(suchasinCanada,wherenationwidepolicieswererecentlyimplemented)
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The 2015 Quality of Death Index Appendix I: Quality of Death Index FAQ
arenotconsidered.Forquantitativeindicators,datafor2014wasoftennotavailable.Wereferredtothemostrecentyearwheredatawasavailableformostcountries.
ThescoresfortheIndexreportedinthispaperarebasedontheweightsforeachindicatorandcategoryassignedbytheEIUattheconclusionofitsresearch,afterdueconsiderationoftheevidenceandexpertopinionsgiventhroughouttheresearchprocess.However,theseweightingsarenotnecessaryafinaljudgementonrelativeindicatorimportance.
Inouranalysisofdemandforpalliativecare,weestimatedrelativeburdenofdiseasebycollectingdataonnumbersofdeathsin2012(latestavailablefigures)for12diseasesidentifiedbyGlobal Atlas of Palliative Care at the End of Life (2014).Dataforprevalenceofdiseaseswouldbeabettermeasure,butsuchinformationwasnotuniformlyavailable.MortalitybydiseaseisderivedfrommedicalinformationondeathcertificatesandcodingofcausesfollowingtheWHO-ICDsystem.Thereliabilityofdatacollectedcanvaryasaresultoferrorswhenissuingdeathcertificates,problemswithdiagnosisandcodingofcauseofdeath.
How should the Index be used?TheQualityofDeathIndex,constructedbytheEIUwiththehelpofpalliativecareexperts,isatool.Itismeanttobeusedasaframeworkinidentifyingpalliativecareissuesatthenationallevel,withtheopportunityforcountriestocompareprovisionwithcountriesinthesameregionorincomegroups.Itcanalsobeusedtoassessdemandforpalliativecare,whichcansupportplanningoffuturequalityandaffordablepalliativecare.
TheheadlineresultsoftheIndexarepresentedinthispaperandinanaccompanyinginfographic,whiledetailedcountryprofilesareavailableinaseparateappendix.AversionoftheworkbookinMSExcelisavailablefordownloadonlineatwww.qualityofdeath.org.Thisworkbookincludesarangeofanalyticaltools:userscanexaminethestrengthsandweaknessesofaparticularcountry,whileanytwocountriesmaybecompareddirectlyandindividualindicatorscanbeisolatedandexamined.WheretheEIUhascreatednewdatasetsthroughinternal,qualitativescoring,userscanseethejustificationforthescoringinthecommentarysectionoftheworkbook.Usersmayalsochangetheweightsassignedtoeachindicatorandcategory.
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The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology
TheQualityofDeathIndexconsistsoftwoseparaterankings:
• Supplyofpalliativecare:rankingtheoverallenvironmentofpalliativecareprovision—theavailability,affordabilityandqualityofpalliativecare
• Demandforpalliativecare:rankingburdenofdiseasesandageingincountriesasareflectionofpalliativecareneed
Country selectionToselectthe80countriesintheIndex,westartedwithgroupingsintheGlobal Atlas of Palliative CarepublishedbytheWorldwideHospicePalliativeCareAlliance(WHPCA).WeselectedcountriesclassifiedasLevel3a(countrieswithisolatedprovisionofpalliativecare),Level3b(countrieswithgeneralisedprovisionofpalliativecare),Level4a(countrieswithpreliminaryhealthsystemintegration)and4b(countrieswithadvancedhealthsystemintegration).
Next,weremovedcountrieswithsmallpopulations(under2m)andsmalleconomies(underUS$10bnnominalGDPin2013),and,toensurebalancedgeographicalcoverage,placedupperlimitsonthenumberofcountriesweincludedineachregion.Wealsomadeseveralexceptionswherecountriesdidnotmeetour
Appendix II: Quality of
Death Index Methodology
initialpopulationandeconomicsizecriteria(egBotswana,MalawiandZimbabwe)toensureafairerregionalrepresentation.
Thefinalselectionconsistsof18countriesinAfricaandtheMiddleEast,17intheAmericas,18inAsia-Pacificand27inEurope.Ofthe80countriesincluded,21arelowincome,24aremiddleincomeand35arehighincome,accordingtodefinitionsusedbytheWorldBank(inwhichlowincomecountriesarethosethathad2013GNIpercapitaoflessthanUS$4,12574,middleincomecountriesmorethanUS$4,125butlessthanUS$12,746andhighincomecountriesmorethanUS$12,746.)OurIndexrepresentsapproximately85%oftheworld’spopulationand91%ofthepopulationagedabove65.
Overall score (“Supply”)TheQualityofDeathIndexoverallrankingassessestheavailability,affordabilityandqualityofpalliativecareforadultsinthesecountries.TheIndexscorescountriesacross20indicatorsgroupedinfivecategories:
• ThePalliative and Healthcare Environment categorysetsthecontextforouroverallassessmentofpalliativecareprovision.Indicatorsinthiscategoryshowthebroaderhealthcareenvironmentandpalliativecareenvironment,aswellastheavailabilityofpalliativecareservices.
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The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology
• TheHuman Resourcescategoryisareflectionofavailabilityoftrainedmedicalcareprofessionals,aswellasqualityoftraining.Weassessnotjustspecialistsinpalliativecare,butalsotraininginpalliativecareforgeneralmedicalpractitioners.
• TheAffordability of Carecategoryrankscountriesaccordingtotheaffordabilityofpalliativecareservices,withanemphasisontheavailabilityofgovernmentfundingforpalliativecare.
• TheQuality of Carecategoryassessesthepresenceofstandards,guidelinesandpracticesthatprovidehighstandardsofpalliativecare.
• TheCommunity Engagementcategoryassessestheavailabilityofvolunteers,anintegralpartofpalliativecareprovision,andpublicawarenessofpalliativecare.
Theindicatorsusedfallintotwobroadcategories:
• Quantitative indicators:fouroftheIndex’sindicatorsarebasedonquantitativedata—forexample,healthcarespendingasapercentageofGDPandnumberofdoctorsper1,000palliative-care-relateddeaths;
• Qualitative indicators:16oftheindicatorsarequalitativeassessmentsofacountry’spalliativecareenvironment,forexample,“Presenceandeffectivenessofgovernment-lednationalpalliativecarestrategy”whichisassessedonascaleof1-5,where1=nonationalstrategyexistsand5=acomprehensive,well-definedandimplementednationalstrategyexists.
Data sourcesTheEconomistIntelligenceUnit’sresearchteamcollecteddatafortheIndexfromJuly2014to
December2014.Whereverpossible,publiclyavailabledatafromofficialsourcesareusedforthelatestavailableyear.Thequalitativeindicatorscoreswereinformedbypubliclyavailableinformation(suchasgovernmentpoliciesandreviews),andcountryexpertinterviews.QualitativeindicatorsscoredbyTheEconomistIntelligenceUnitareoftenpresentedonanintegerscaleof1-5(where1=worst,5=best).
Indicatorscoresarenormalisedandthenaggregatedacrosscategoriestoenableanoverallcomparison.Normalisationusesthefunction:
Normalised x = (x - Min(x)) / (Max(x) - Min(x))
whereMin(x)andMax(x)are,respectively,thelowestandhighestvaluesinthe80countriesforanygivenindicator.Thenormalisedvalueisthentransformedintoapositivenumberonascaleof0-100.Thiswassimilarlydoneforquantitativeindicatorswhereahighvalueindicatesmoreavailable,affordableandhigh-qualitypalliativecareprovision.(Insimplerterms,normalisationtakesthemaximumvalueforanyoneindicatorandmakesit100andtheminimum0,andturnsvaluesinbetweenintoappropriategradationsonthatscale.)
Categories and weightsTheEIUresearchteamassignedcategoryandindicatorweightsafterconsultationswithinternalanalystsandexternalpalliativecareexperts.Thefirstthreecategories—PalliativeandHealthcareEnvironment,HumanResourcesandAffordabilityofCare—areeachallocatedaweightingof20%ofthefullindex.TheQualityofCarecategoryisweighted30%—makingitthemostimportantcategory.CommunityEngagementisweightedat10%ofthefullindex.
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The 2015 Quality of Death Index Appendix II: Quality of Death Index Methodology
Thefollowingtableprovidesabriefdescriptionofindicators,dataandweights:
Indicator Unit Year Source Weight DescriptionPalliative and healthcare environment 20%
Healthcarespending %ofGDP 2012 WorldHealthOrganization(WHO)
20% GovernmenthealthcareexpenditureasapercentageofGDP
Presenceandeffectivenessofgovernment-lednationalpalliativecarestrategy
EIUrating 2014 EIUanalysis 50% Comprehensivenessofstrategyintermsofvision,goalsandobjectives;effectivenessofstrategiesintermsofimplementationmechanismsandpresenceofspecificmilestonesandprovisionofregularreview.5=Thereisacomprehensivestrategyonnationalpalliativecaredevelopmentandpromotion.Ithasaclearvision,clearlydefinedtargets,actionplanandstrongmechanismsinplacetoachievetargets.Infederated-structurecountries,therearestrongandclearlydefinedstrategiesthatindividualstatesmustfollow.Thesemechanismsandmilestonesareregularlyreviewedandupdated.1=Thereisnogovernment-ledpalliativecaredevelopmentandpromotionstrategy
Availabilityofresearch-basedpolicyevaluation
EIUrating 2014 EIUanalysis 10% Presenceofgovernment-led/supportedresearchandfundingforpalliativecarestudyandimprovement.5:Thereisagovernment-led(orgovernment-supported)researchunitthatregularlycollectscomprehensivedatatomonitorqualityofthecountry’spalliativecaresystem.Thebodyiswell-funded.Studiesinvolvesurveyswithhealthcareprofessionals,hospitals/hospicesandpatients.Thefindingsinfluencethecountry’spalliativecarestrategyanddevelopment.1=Thereisnodatacollectedaroundthecountry’spalliativecaresystem.Thereisnoavailablefundingforsuchresearch.Thereisnoevidence-basedchange.
Capacitytodeliverpalliativecareservices
% 2011 WHPCA,EIUanalysis 20% Estimatedcapacityofpalliativecareservicesavailable(i.e.ofspecialisedprovidersofpalliativecare,includingthosethatadmitpatientsandprovideservicesathomeandinfacilities)dividedbythenumberofdeathsinagivenyear.
Human resources 20%
Availabilityofspecialisedpalliativecareworkers
EIUrating 2014 EIUanalysis 40% Availabilityofhealthcareprofessionalswithspecialisedtraininginpalliativecare.5=Therearesufficientspecialisedpalliativecareprofessionals,comprisingofdoctors,nurses,psychologists,socialworkersetc.Voluntaryworkersshouldhaveparticipatedinacourseofinstructionforvoluntaryhospiceworkers.Thespecialistpalliativecaretrainingforthecorecareteamisaccreditedbynationalprofessionalboards.1=Doctorsandnursesworkingoutsidepalliativecarehavenoknowledgeofpalliativecare.Thereisnocompulsorycourseinmedicalschoolsonpalliativecare.
Generalmedicalknowledgeofpalliativecare
EIUrating 2014 EIUanalysis 30% Qualityofbasicandspecialisedmedicaltraininginpalliativecarefordoctorsandnurses.5=Alldoctorsandnursesworkingwithinoroutsidepalliativecarehaveagoodunderstandingofpalliativecare.Palliativecareisacompulsorycourseduringdoctorandnursetraininginschools.Doctorsandnursesalsoregularlygetprofessionaltrainingthroughouttheircareer.1=Doctorsandnursesworkingoutsidepalliativecarehavenoknowledgeofpalliativecare.Thereisnocompulsorycourseinmedicalschoolsonpalliativecare.
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Indicator Unit Year Source Weight DescriptionCertificationforpalliativecareworkers EIUrating 2014 EIUanalysis 10% Presenceofprofessionalbodyforcertificationofpalliative
careworkers(doctorsandnurses).1=Thereisanational-levelprofessionalbodyaccreditingpalliativecareworkers.0=Thereisnonational-levelprofessionalbodyaccreditingpalliativecareworkers.
Numberofdoctorsper1,000PC-relateddeaths
Per1,000PC-relateddeaths
2012 WHO,EIUcalculation
10% Measureofhumanresourceavailability(doctors)inhospitals/hospicesasanindicationofavailabilityofpalliativecareservice.
Numberofnursesper1,000PC-relateddeaths
Per1,000PC-relateddeaths
2012 WHO,EIUcalculation
10% Measureofhumanresourceavailability(nurses)inhospitals/hospicesasanindicationofavailabilityofpalliativecareservice.
Affordability of care 20%
Availabilityofpublicfundingforpalliativecare
EIUrating 2014 EIUanalysis 50% Presenceandeffectivenessofgovernmentsubsidies/programmesforpalliativecareservices.5=Thereareextensivegovernmentsubsidiesorprogrammesforindividualsaccessingpalliativecareservices.Thequalificationcriteriaareclearandtheprocesstoaccesssuchfundingislargelyeasyandsmooth.Informationonhowtoaccesssuchfundingiswidelyavailable.Effectivenessofprogrammesisroutinelyandadequatelymonitored.1=Therearenogovernmentsubsidiesforindividualsaccessingpalliativecareservices.
Financialburdentopatientsforavailablepalliativecareservices
EIUrating 2014 EIUanalysis 40% Reflectionofeffectivenessoffundinguse.5=80-100%ofendoflifecareacrosshospitals,hospices,homecareetc.isfundedbysourcesotherthanthepatient.1=0-20%ofendoflifecareisfundedbysourcesotherthanthepatient.
Nationalpensionschemecoverageofpalliativecareservices
EIUrating 2014 EIUanalysis 10% Coverageofpalliativecareservicesincountry’spension/insurancescheme3=Thenationalpension/insuranceschemeadequatelycoverspalliativecareservices.1=Thenationalpension/insuranceschemedoesnotcoverpalliativecareservices.
Quality of care 30%
Presenceofaccreditationandmonitoringstandardsfororganisations
EIUrating 2014 EIUanalysis 20% Presenceandscopeofmonitoringstandardsfororganisationsdeliveringpalliativecare;enforcementandreviewmechanisms.1=Nationalstandardsforpalliativecareexists.0=Nationalstandardsforpalliativecaredoesnotexist.
Availabilityofopioidpainkillers EIUrating 2012,orlatestavailableyear
InternationalNarcoticsControlBoard,EIUanalysis
30% Availabilityofmorphineandmorphineequivalents.5=Freelyavailableandaccessible,1=Illegal
Availabilityofpsychosocialsupportforpatientsandfamilies
EIUrating 2014 EIUanalysis 15% Availabilityofpsychosocialsupportforpatientsandfamilies.3=Psychosocialsupportiswidelyavailableandusedinpalliativecarebothforfamiliesandpatients.1=Psychosocialsupportisalmostneveravailableforfamiliesandpatients.
PresenceofDoNotResuscitate(DNR)policy
EIUrating 2014 EIUanalysis 10% WhetherDNRpolicyhasalegalstatusornot2=Yes1=No
Shareddecision-making EIUrating 2014 EIUanalysis 15% Extenttowhichdiagnosticandprognosticinformationissharedwithpatient.5=Doctorsandpatientsarepartnersincare.Patientsarefullyinformedoftheirdiagnosisandprognosis.1=Doctorsrarelyshareprognosiswithpatients.
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Indicator Unit Year Source Weight DescriptionUseofpatientsatisfactionsurveys EIUrating 2014 EIUanalysis 10% Useofpatientoutcomeandsatisfactionsurveysinthe
improvementofserviceprovision.5=Thereiswidespreaduseofpatientsatisfactionsurveysforpatientsandtheirfamiliesbasedongovernmentguidelines.Thesurveyiscomprehensiveandcoverspainmanagement,coordinationofcareandotherserviceprovisionbydoctors,nursesandotherhealthcareprofessionalinvolved.Thesefindingsareregularlyusedtoimprovequalityofserviceandcare.1=Thereisnouseofpatientsatisfactionsurveys.
Community engagement 10%
Publicawarenessofpalliativecare EIUrating 2014 EIUanalysis 70% Publicawarenessandinformationaroundofpalliativecare.5=Publichasastrongunderstandingandawarenessofpalliativecareservices.Readilyavailableinformationonpalliativecareisavailablefromgovernmentportalsandcommunitymechanisms.1=Publicnounderstandingandawarenessofpalliativecareservices.Thereisnoinformationongovernmentportalsandcommunitymechanismsonpalliativecare.
Availabilityofvolunteerworkersforpalliativecare
EIUrating 2014 EIUanalysis 30% Availabilityofvolunteerworkersforthecareofpalliativecarepatients.5:Therearesufficientvolunteerworkerstomeettheneedsofthecountry’spalliativecaresystem;volunteerworkersaremostlyinthecareofpatientsandtheyreceiveregulartraininginthecareofpatients.1=Thereareveryfewvolunteerworkersinpalliativecareservices,andtheyaremostlynotwell-trainedinthecareofpatients.
Demand for palliative careEachcountryisalsogivenascoremeasuringitsneedforpalliativecare.Thisscoreisacompositeofthreeindicators:
• Burden of disease:themortalityrateofdiseasesidentifiedbytheWHOasmostrequiringpalliativecare.Weassumethatthehigherthemortalityrate,thegreatertheprevalenceofthesediseasesandthereforeagreaterneedforpalliativecare
• Old age dependency ratio:theproportionofpersonsagedabove65asaproportionofpersonsaged15-64.Ahigherproportionindicatesagreaterneedbecausethereisasmallergrouptocarrytheburdenfromanageingpopulation.
• Speed of ageing:theannualrateofgrowth(2015-30)ofthepopulationagedabove65.Ahigherproportionindicatesarapidlyageingpopulation,andthereforegreaterneedforpalliativecare.
Burden of disease calculationTheEconomistIntelligenceUnitbuiltontheresearchconductedbytheWHOinestimatingtheneedforpalliativecareineachcountry.TheWHOfoundthatthefollowingdiseasesrequiredpalliativecareattheendoflife:Alzheimer’sdiseaseandotherdementias,cancer,cardiovasculardiseases,cirrhosisoftheliver,chronicobstructivepulmonarydiseases(COPD),diabetes,HIV-Aids,kidneyfailure,multiplesclerosis,Parkinson’sdisease,rheumatoidarthritisanddrug-resistanttuberculosis.
TheEconomistIntelligenceUnitcollectedadultmortalityrates(aged15+)foreachoftheabovediseasesforthelatestavailableyear(2012).Wheremortalityrateswerenotavailable,wemadeestimationsbasedoncountrieswithsimilarincomeanddemographics.Mortalityratesforeachdiseasewerecollectedasaproportionoftotaldeathsforthoseagedabove15in2012.
Wethenappliedthepainprevalenceratetoeach
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diseaseandcountry.PainprevalenceratedaretakenfromtheGlobal Atlas of Palliative Care at the End of Lifeandareanauthoritativemeanstoestimatepalliativecareneeds.Thesemeasuredegreeofpainforeachdisease(butdonotconsiderlengthofsuffering).Painprevalenceratesareasfollows:
Alzheimer’sdiseaseandotherdementias:47%
Cancer(malignantneoplasms):84%
Cardiovasculardiseases:67%
Cirrhosisoftheliver:34%
Chronicobstructivepulmonarydisease:67%
Diabetes:64%
HIV-Aids:80%
Kidneyfailure:50%
Multiplesclerosis:43%
Parkinson’sdisease:82%
Rheumatoidarthritis:89%
Drug-resistanttuberculosis:90%
Finally,togeteachcountry’sburdenofdiseasescore,weaddedthe12individualdiseasescores.Anillustrationisasfollows:
ArgentinaTotalnumberofdeaths(aged15+)fromallcausesin2012:302,290
Disease
Alzheimer’sandotherdementias
Cancer(malignantneoplasms)
Cardiovasculardiseases
Cirrhosis of the liver COPD Diabetes HIV/AIDS
Kidney failure
Multiple sclerosis
Parkinson’s disease
Rheumatoid arthritis
Drug-resistant TB
Numberofdeaths 3,671.19 66,373.80 73,594.35 6,688.39 26,110.46 9,480.64 3,583.30 6,846.80 111.04 1,183.40 295.42 206.99
Painprevalencerate 47% 84% 67% 34% 67% 64% 80% 50% 43% 82% 89% 90%
BurdenofdiseaseforArgentina=(3,671/302,290)*47%+(66,373/302,290)*84%…(206/302,290)*90%=0.4644
Demand for palliative care indicators and weightsIndicator Unit Year Source Weight DescriptionBurdenofdisease Score 2012 WHO,EIU
calculation60% Calculatedasnumberofdeathsbypalliativecarediseases
(listof12diseasesidentifiedbyWHO),dividedbytotalnumberofdeathsincountry,multipliedbypainprevalencerate.
Oldagedependencyratio % 2014 EIU,UNPopulationdata
20% Percentageofpersonsagedover65asaproportionofworking-agedindividuals(15-64)
Speedofageing % 2015-2030
EIUanalysis 20% Annualrateofgrowthofpopulationofpersonsagedabove65,2015-2030
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1InthewordsofAtulGawande;Being Mortal: Medicine and What Matters in the End,ProfileBooks,2014
2WHODefinitionofPalliativeCare,availableathttp://www.who.int/cancer/palliative/definition/en/
3ThisrelatestothemathematicalaverageofthescoresintheIndex;itdoesnotnecessarilyimplythatcountrieswithabove-averagescoresprovidesatisfactorypalliativecareacrossallfactorsconsideredintheIndex
4Agedover15,basedonUNpopulationestimatesfor2015exceptTaiwan,2010censusdata
5PopulationfiguresrefertoUN2015estimates
6 Global Atlas of Palliative Care at the End of Life,WorldwideHospicePalliativeCareAllianceandWorldHealthOrganization,January2014.Availableathttp://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf
7ParliamentaryandHealthServiceOmbudsman,Dying without dignity,May2015.Availableathttp://www.ombudsman.org.uk/__data/assets/pdf_file/0019/32167/Dying_without_dignity_report.pdf
8Smithetal,“Evidenceonthecostandcost-effectivenessofpalliativecare:Aliteraturereview”,Palliative Medicine,vol.28no.2,130-150,February2014.Abstractathttp://pmj.sagepub.com/content/28/2/130
9Mayetal,“ProspectiveCohortStudyofHospitalPalliativeCareTeamsforInpatientsWithAdvancedCancer:EarlierConsultationIsAssociatedWithLargerCost-SavingEffect”,Journal of Clinical Oncology,June8th2015.Abstractavailableathttp://jco.ascopubs.org/content/early/2015/06/08/JCO.2014.60.2334.abstract
10Sleemanetal,“Researchintoend-of-lifecancercare—investmentisneeded”,The Lancet,vol.379no.9815,February11th2012.Availableathttp://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60230-X/fulltext
11 Global Atlas of Palliative Care,op.cit.
12SeeTaiwancasestudy
13Asia-PacificHospicePalliativeCareNetwork,“Japan—PalliativeCareBecomingtheNorm”,April20th2015.Availableathttp://aphn.org/japan-palliative-care-becoming-the-norm/
14MaryKwang,“DevelopingPalliativeCareonMultipleFronts”,Hospice Link,vol.32no.4,SingaporeHospiceCouncil,December2013.Availableathttp://www.singaporehospice.org.sg/PDFs/2013/HL%204-2013-WEB.pdf
15LatinAmericanAssociationforPalliativeCare,Atlas of palliative care in Latin America,citedinehospicesummary,January7th2013.Availableathttp://www.ehospice.com/Default/tabid/10686/ArticleId/2470
16Guerreroetal,“SymptomControlandPalliativeCareinChile”,Journal of Pain and Palliative Care Pharmacotherapy,no.17,13-22,2003.Availableathttp://cuidadospaliativos.org/archives/Symptom%20Control%20and%20Palliative.pdf
17BrendaCameronandAnnaSantosSalas,“UnderstandingtheProvisionofPalliativeCareintheContextofPrimaryHealthCare:QualitativeresearchfindingsfromapilotstudyinacommunitysettinginChile”,Journal of Palliative Care,vol.25no.4,275-283,2009.Availableathttp://uofa.ualberta.ca/nursing/-/media/nursing/about/docs/cameronsantossalas.pdf
18InternationalAssociationforHospice&PalliativeCare,“DevelopmentofpalliativecareinMongolia”,IAHPC News,vol.10no.4,April2009.Availableathttp://www.hospicecare.com/news/09/04/regional_reports.html
19OdontuyaDavaasuren,“MyLifeInspiredbyLoveandGuidedbyKnowledge”,Ohio Health International Palliative Care Leadership Development Initiative,December2013.Availableathttp://www.ipcrc.net/news/wp-content/uploads/2012/01/Odontuya-Davaasuren-Ulaanbaatar-Mongolia-December-2013_dp-f.pdf
20MinistryofHealth,PoliciesandRegulations,NoticeonMedicalInstitutionDepartmentList,2008.Availableathttp://www.moh.gov.cn/mohzcfgs/pgz/200804/18710.shtml.TheMinistryofHealthwasdissolvedin2013anditsfunctionsintegratedintotheNationalHealthandFamilyPlanningCommission.
21Zou,M.,M.O’Connor,L.Peters,W.Jiejun,“PalliativeCareinMainlandChina,”Asia Pacific Journal of Health Management,April2013
22ShanghaiMunicipalCommissionofHealthandFamilyPlanning,“Noticeontheimplementationofthe2014municipalprojecttoadd1000palliativecarebeds,”2014.Availableathttp://www.wsjsw.gov.cn/wsj/n429/n432/n1487/n1512/u1ai132927.html
23Xinhua,”Tenelderlysupportservicessubjecttogovernmentprocurement;hospicecareincludedforthefirsttime”,2014.Availableathttp://www.tj.xinhuanet.com/tt/jcdd/2014-08/12/c_1112034687.htm
24ZhaoHan,“Childrenofpartyluminariesraiseawarenessfordyingwithdignity”,Caixin online,January8th2015.Availableathttp://english.caixin.com/2015-01-08/100772429.html
Endnotes
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25SeenoteonFigure2.4
26SeeMongoliacasestudy
27EAPCBlog,EuropeanAssociationforPalliativeCarewebsite,“Colombiapassespalliativecarelaw”,November26th2014.Availableathttps://eapcnet.wordpress.com/2014/11/26/colombia-passes-palliative-care-law/
28SeeSpaincasestudy
29SeenoteonFigure2.4
30EuropeanAssociationofPalliativeCare,Atlas of Palliative Care in Europe 2013, Full Edition,SpainCountryReport.Availableathttp://www.eapcdevelopment-taskforce.eu/images/booksdocuments/AtlasEuropafulledition.pdf
31Gomez-Batisteetal,“CataloniaWHOpalliativecaredemonstrationprojectat15Years”,Journal of Pain and Symptom Management,vol.33no.5,May2007.Abstractavailableathttp://www.ncbi.nlm.nih.gov/pubmed/17482052
32UniversityofCapeTown,Prospectus,Post-graduateDiplomainPalliativeMedicine,2014.Availableathttp://www.publichealth.uct.ac.za/sites/default/files/image_tool/images/8/Information%20booklet%20PG%20Diploma%202014.pdf
33USAID,“TheThogomeloProject,SouthAfrica”,http://www.aidstar-one.com/task_orders/thogomelo_project
34ehospice,“PanamachampionspalliativecareattheWorldHealthOrganization—InterviewwithDrGasparDaCosta”,February10th2014.Availableathttp://www.ehospice.com/ArticleView/tabid/10686/ArticleId/8926/language/en-GB/View.aspx
35LawNumber23,February16th,1954.ReferencedinPain&PolicyStudiesGroup,UniversityofWisconsinSchoolofMedicineandPublicHealthCarboneCancerCenter,Improving Global Opioid Availability for Pain & Palliative Care: A Guide to a Pilot Evaluation of National Policy,December2013.Availableathttp://www.painpolicy.wisc.edu/sites/www.painpolicy.wisc.edu/files/Global%20evaluation%202013.pdf
36SeeUScasestudy
37InstituteofMedicine,Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,September2014.Availableathttp://books.nap.edu/openbook.php?record_id=18748
38 Global Atlas of Palliative Care,op.cit.
39AffordableCareAct:http://www.hhs.gov/healthcare/rights/law/
40 Dying in America,op.cit.
41PamBelluck,“CoverageforEnd-of-LifeTalksGainingGround”,New York Times,August30th2014.Availableathttp://www.nytimes.com/2014/08/31/health/end-of-life-talks-may-finally-overcome-politics.html
42Basedonthreehoursofcareperdayoverthecourseofoneweek.“2.4mbeddayslostin5yearsfromsocialcaredelays,”AgeUK,June17th2015,http://www.ageuk.org.uk/latest-news/bed-days-lost-social-care-delays/
43Purdyetal,“ImpactoftheMarieCurieCancerCareDeliveringChoiceProgrammeinSomersetandNorthSomersetonplaceofdeathandhospitalusage:aretrospectivecohortstudy,”BMJ Supportive & Palliative Care,March2015.Abstractavailableathttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC4345906/
44Tenoetal,“IsCarefortheDyingImprovingintheUnitedStates?”Journal of Palliative Medicine,vol.18no.8,April2015.Abstractavailableathttp://online.liebertpub.com/doi/abs/10.1089/jpm.2015.0039?journalCode=jpm
45SeeboxonP43
46NarcoticDrugsandPsychotropicSubstances(Amendment)Act,March10th2014.Availableathttp://www.indiacode.nic.in/acts2014/16%20of%202014.pdf
47HumanRightsWatch,Unbearable Pain: India’s Obligation to Ensure Palliative Care,October2009.Availableat:http://www.hrw.org/sites/default/files/reports/health1009web.pdf
48“Strengtheningofpalliativecareasacomponentofcomprehensivecarethroughoutthelifecourse”,Sixty-SeventhWorldHealthAssembly,May24th2014.Availableathttp://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf
49“HowUgandanhospicemakescheapliquidmorphine”,BBCNews,June2nd2014.Availableathttp://www.bbc.com/news/health-27664121
50 Atlas of Palliative Care in Latin America,“RegionalAnalysis”,InternationalAssociationforHospiceandPalliativeCare,2012,p5.Availableathttp://cuidadospaliativos.org/uploads/2013/12/Atlas%20of%20Palliative%20Care%20in%20Latin%20America.pdf
51SeeforexamplethecasestudyonKeralainthe2010EIUreport.Availableathttp://graphics.eiu.com/upload/eb/qualityofdeath.pdf
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52http://www.dyingmatters.org/overview/about-us
53IanAusten,“CanadaCourtStrikesDownBanonAidingPatientSuicide”,New York Times,February6th2015.Availableathttp://www.nytimes.com/2015/02/07/world/americas/supreme-court-of-canada-overturns-bans-on-doctor-assisted-suicide.html
54UKParliamentwebsite,http://services.parliament.uk/bills/2014-15/assisteddying.html.Forpollresults,seeforexamplehttp://www.populus.co.uk/wp-content/uploads/DIGNITY-IN-DYING-Populus-poll-March-2015-data-tables-with-full-party-crossbreaks.compressed.pdf
55PublicHealthOregon,“Oregon’sDeathWithDignityAct—2014”.Availableathttps://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year17.pdf
56WashingtonStateDepartmentofHealthwebsite,http://www.doh.wa.gov/YouandYourFamily/IllnessandDisease/DeathwithDignityAct
57PatientsRightsCouncil,“Vermont”.http://www.patientsrightscouncil.org/site/vermont/
58HouseofLords,“CriminalLawandAssistedSuicideinSwitzerlandHearingwiththeSelectCommitteeontheAssistedDyingfortheTerminallyIllBill,”February3rd2005.Availableathttp://www.rwi.uzh.ch/lehreforschung/alphabetisch/schwarzenegger/publikationen/assisted-suicide-Switzerland.pdf
59PatientsRightsCouncil,“Belgium”.http://www.patientsrightscouncil.org/site/belgium/
60PatientsRightsCouncil,“Holland’sEuthanasiaLaw”.http://www.patientsrightscouncil.org/site/hollands-euthanasia-law/
61GovernmentoftheNetherlandswebsite:http://www.government.nl/issues/euthanasia/euthanasia-assisted-suicide-and-non-resuscitation-on-request
62 Being Mortal,op.cit.
63PublicHealthOregon,op.cit.
64TaiwanHealthPromotionAdministration,2013 Annual Report,p103-105.Availableathttp://www.hpa.gov.tw/BHPNet/Web/Easy/FormCenterShow.aspx?No=201401140001
65Seeappendixforfullmethodology
66WorldHealthOrganization,HealthStatisticsdatabase,“Diseaseandinjuryregionalmortalityestimates,2000–2012”.Availableathttp://www.who.int/healthinfo/global_burden_disease/estimates/en/index1.html
67“AgeingintheTwenty-FirstCentury:ACelebrationandAChallenge”,UnitedNationsPopulationFund,2012.Availableathttp://www.unfpa.org/sites/default/files/pub-pdf/Ageing%20report.pdf
68WorldHealthOrganization,Healthstatisticsdatabase,“Projectionsofmortalityandcausesofdeath,2015and2030”.Availableathttp://www.who.int/healthinfo/global_burden_disease/projections/en/
69“EarlyPalliativeCareforPatientswithMetasticNon-Small-CellLungCancer”,New England Journal of Medicine,August19th2010.Availableathttp://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678
70“Anintegratedpalliativeandrespiratorycareserviceforpatientswithadvanceddiseaseandrefractorybreathlessness:arandomisedcontrolledtrial”,The Lancet,vol.2,no.12,p979–987,December2014.Availableathttp://www.thelancet.com/journals/lanres/article/PIIS2213-2600(14)70226-7/abstract
71 Global Atlas of Palliative Care,op.cit.
72EuropeanAssociationofPalliativeCare,Atlas of Palliative Care in Europe 2013.Availableathttp://www.eapcdevelopment-taskforce.eu/images/booksdocuments/AtlasEuropafulledition.pdf
73InternationalAssociationforHospiceandPalliativeCare,Atlas of Palliative Care in Latin America.Availableathttp://cuidadospaliativos.org/uploads/2013/12/Atlas%20of%20Palliative%20Care%20in%20Latin%20America.pdf
74TheWorldBankdefinescountrieswithGNIpercapitabetweenUS$1,045andUS$4,125aslower-middleincomecountries.IntheIndex,wehavecombinedtheWorldBank’slowincomeandlower-middleincomecountriesinonelow-incomebracket.
While every effort has been taken to verify the accuracy of this information, The Economist Intelligence Unit Ltd. cannot accept any responsibility or liability for reliance by any person on this report or any of the information, opinions or conclusions set out in this report.
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