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The 2015 Quality of Death Index Ranking palliative care across the world A report by The Economist Intelligence Unit

Commissioned by

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



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



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



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



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



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



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.



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.



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



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



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



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



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.



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



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.



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


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



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.”



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


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.



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



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 care 69 16.3



Humanresources


Communityengagement

China

Average

Highest

0

20

40

60

80

100

Thebiggestchallengeistochangepeople’sminds,toletthemknowthatsocietycantakegoodcareoftheirparentsinthelatestagesofillnessandhelpthemdiewithdignity.

Li Wei, founder, Songtang Hospice, Beijing



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



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.



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



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



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.



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.



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.”



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








Humanresources


Communityengagement

Spain

Average

Highest

0

20

40

60

80

100



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








Humanresources


Communityengagement

South Africa

Average

Highest

0

20

40

60

80

100



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



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



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.

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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



withpatientsandfamiliesabouttreatmentdecisions,arguesDrByock.Hebelievesacademicinstitutionsshouldbetestingdoctorsontheseskillsaspartofgainingtheirmedicaldegrees.

“Butthey’vemadeonlyincrementalimprovementsinmedicaltrainingandeducationoverthepast10years,”hesays.“Therehavebeensomeimprovementsbutthosearesmallcomparedtowhat’sneeded.”



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



Human resources =41 41.6


Quality of care =38 47.5



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the 2015 quality of death index - maison de soins ...€¦ · the 2015 quality of death index...

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