2015 Quality of Death Index Country Profiles

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.

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



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





Humanresources


Communityengagement

Panama

Average

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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



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



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.”



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








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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

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Theevidencesuggeststhatthevastmajorityofpeopledyinginhospitaldon’twanttobethere.

David Praill, former chief executive, Hospice UK

thepublicsector,whichwasfamouslyaccusedofplanningtorun“deathpanels”.41

Conversely,inthelongterm,DrMeierworriesabouttheprofitmotive.“Theobviousdisadvantageisthatprivatesectoris

beholdentoshareholderstoprovidequarterlyreturns,”shesays.“Sotheworryisthatimportantneededcarethatisexpensivemightnotbeoffered.”



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.



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


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.”



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



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.



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



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.”



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



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.”



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



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








Humanresources


Communityengagement

Taiwan

Average

Highest

0

20

40

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medicalconditionsandforenablingcommunicationbetweencaregiversandmedicalspecialiststhroughSkype.Theplatformalsoincludesonlinecareinstructionsandcommunityresources,andisavailableinsixdifferentlanguagestoensurethatforeignhealthaidesarealsoabletousetheservice.DrYingweiWang,chiefoftheHeartLotusHospiceatTzuchiGeneralHospital,reportsthattheoutcomesandcaregiverfeedbackhavebeenverypromising,andexpectsthattheprogramwillbeexpandedincomingyears.

Theuseofnewplatformsiswelcomedintech-savvyTaiwan,

andthiskindofinnovationwillbeessentialtokeeppacewiththehealthcareneedsofTaiwan’sageingpopulation.“Theproportionofourpopulationover65hasdoubledfrom7%to14%injust20years,”saidDrWang,withmanyelderlypatientslivinginruralareaswithlimitedaccesstopalliativecare.Effortstoprovidecommunityhospitalswithadditionaltrainingandaccesstopalliativecareexpertsareunderway,includinganationwidebi-weeklyconferencecallthatlinkspalliativecarepractitionerstosharetheirexperiencesanddiscussrecentcases.



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



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

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or p

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Low demand for palliative care High demand for palliative care

Qual

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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



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.”



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.



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.


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



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.



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)



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.


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.



• 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.



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.



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.



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



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



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



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


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



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


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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2015 Quality of Death Index Country Profiles

Healthcare

Transcript of 2015 Quality of Death Index Country Profiles