Affordability of care - Maison de soins palliatifs St …maisonstraphael.org/wp-content/uploads/2016/02/The_Economist...Affordability of care category (20% weighting) ... argues that

35 © The Economist Intelligence Unit Limited 2015

The 2015 Quality of Death Index Ranking palliative care across the world

Affordability of care4 Governmentfundingisessentialinordertoincreaseaccesstocare.Insomecases,governmentshaveestablishedsubsidiesforpalliativecareservicesorofferstate-runservices.Insomecountries,nationalpensionschemescoverthecostsofpalliativecareservices(thisisthecasefor32ofthecountriesintheIndex).Thenon-profitsectoroftenplaysarole,too.IncountriessuchastheUK,palliativecareandhospiceservicesarestronglysupportedbythecharitablesector.

Inothercases,though,littlefundingismadeavailabletopatientsinneedofthisformofcare,particularlyinpoorcountries,whereneithergovernmentfundingnorprivateinsuranceisavailable.Moreover,evenifstate-runprogrammesorsubsidiesareavailable,theymaybedifficulttoaccessandpoorlymonitored.

Inthiscategory,countriesareassessedonthreeindicators:availabilityofpublicfundingforpalliativecare,thefinancialburdenpalliativecareplacesonpatients,andtheavailabilityofcoveragethroughnationalpensionschemes.Ofthese,publicfundingavailabilityandthefinancialburdentopatientsreceivethehighestweightings,of50%and40%respectively.

Inthiscategory,Australia,Belgium,Denmark,IrelandandtheUKtopthelist(andthehigh-incomecountrygroup),whileCubaandPanamasharesecondplacewithanumberofrichercountriesinEurope(Finland,Germany,Italy,theNetherlandsandSweden)andAsia(Singapore,SouthKoreaandTaiwan,

Figure4.1).AtthebottomofthelistarethePhilippines,Zambia,Zimbabwe,UkraineandNigeria.Aswellasmakingitintothetop10inthiscategory,CubaandPanamaalsotopthelistoftheAmericasregion,abovetheUS,whichsharesthirdplacewithChile.

TherelativelyhighrankoftheUSmightseemodd,sinceUShealthcareislargelyoperatedbytheprivatesectorandAmericanspayahighpriceforit,bothininsurancepremiumsandout-of-pocketcosts.YetforAmericansthingschangedramaticallyaftertheageof65,whentheybecomeeligibleforthefederallyfundedMedicareprogramme,whichprovideshealthinsurancetothosethathaveworkedandpaidintothesystem.

Evenso,thisreimbursementsystemhascreatedincentivesforgreateruseofservicessuchashospitalstays,intensiveandemergencycare,resultinginlatehospiceenrolment—particularlyaspatientshavetorelinquishcurativetreatmentstobeeligibleforreimbursementsforpalliativecare.36

Moreover,giventhecomplexnatureoftheconditionsofpatientsinneedofpalliativecare,theUSsystemhasitsflaws,saysJamesTulsky,chairoftheDepartmentofPsychosocialOncologyandPalliativeCareattheDana-FarberCancerInstituteinBoston.

“ThefinancingsystemsintheUShavecreatedsignificantproblems,”saysDrTulsky,whocontributedtotheInstituteofMedicine’s

OneoftherecommendationsofDying in America istobreakdownbarriersbetweenmedicalandsocialfunding.Becauseoftenalotofwhatpeopleneedtowardstheendoflifecan’tbemetthroughtraditionalfundingmodels.

James Tulsky, chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute



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

Quality of Death overall score (supply) 9 80.8

Palliative and healthcare environment 6 78.9

Human resources 14 70.2

Affordability of care =18 82.5

Quality of care =8 90.0

Community engagement =9 75.0

Palliative andhealthcare environment

Humanresources

Affordability of careQuality of care

Communityengagement

United States of America

Average

Highest

0

20

40

60

80

100



Acrosstheworld,largenumbersofpeopledieinhospitaleachyear,yetmanywouldratherspendtheirfinaldaysathomeorinahospice.IntheUK,thisissomethingthepalliativecarecommunityisworkingtochange—notonlytoincreasethequalityofcarepeoplereceivebutalsotohelpthecountry’sNationalHealthServicecutcosts.

RecentresearchbyAgeUK,acharity,foundthattheaveragenumberofpatientskeptinhospitalunnecessarilywhilewaitingforcommunityorsocialcareroseby19%between2013/14and2014/15.AnNHSbedcostsonaverage£1,925(US$2,980)perweek,AgeUKestimates,comparedtoabout£558foraweekinresidentialcareor£357forhomecare.42

“It’saverysimplecase,”saysDavidPraill,untilrecentlychiefexecutiveofHospiceUK(formerlyHelptheHospices).“Evidencesuggeststhatthevastmajorityofpeopledyinginhospitaldon’twanttobethere.”MrPraillcallsthisthe“silent

waitinglist”ofpeoplewhowouldratherdieathomeorinacommunitycarefacility.

HospiceUKbelievesthenumberofpeopledyinginhospitalcouldbecutby20%.Itisembarkingonresearchtoidentifymodelsinplacearoundthecountrythatareworkingtowardsthisgoal,andtoassesswhichishavingthebiggestimpact.“Alotofdifferentmodelsarebeingexploredandthat’sgottobepartoftheefforttogetpeopletostayathomeorgetbackthere,”MrPraillsays.“Andthefeedbackwe’regettinginformallyisthatyoucanmakeadifference,evenifyoujusthavethatpersonforthelast24hoursbeforedeath.”

InsomepartsoftheUK,patientsarereturnedtotheirhomeswithintensivepackagesofcare.Technologyenablingremotemonitoringcansupportthis.Anotheroptionisforpeopletobecaredforincommunityornursinghomesorhospices.

MarieCurieCancerCareprovideshomepalliativecarenursingandothersupport.ItsDeliveringChoiceProgramme,launchedin2004,helpsensurepatientsarecaredforintheirplaceofchoice.Onestudyfoundthatpeoplewhousedtheprogrammewereatleast30%lesslikelytodieinhospital,orhaveanemergencyhospitaladmissionoremergencydepartmentvisitinthelastdaysoflife,thanthosewhodidnotuseit.43

HospiceUKarguesthataswellasincreasingqualityofcare,keepingdyingpeopleoutofhospitalwillsaveNHSfundsandincreasetheavailabilityofhospitalbedsforthoseinneedofacutecare.

“Everyoneagreesit’sascandalthatsomanypeoplearedyinginhospitalswhodon’twanttobethere.Butit’salsoblockingthepublicwaitinglist,”saysMrPraill.“Soifwecangetpeopleoutofhospitalthatdon’tneedtobethere,evenifit’sonlyforthelastfewdaysoflife,itfreesupbeds.”

Case study: UK—Dying out of hospital

Rank/80 Score/100





Quality of care 1 100.0



Humanresources


Communityengagement

United Kingdom

Average

Highest

0

20

40

60

80

100

Theevidencesuggeststhatthevastmajorityofpeopledyinginhospitaldon’twanttobethere.

David Praill, former chief executive, Hospice UK

thepublicsector,whichwasfamouslyaccusedofplanningtorun“deathpanels”.41

Conversely,inthelongterm,DrMeierworriesabouttheprofitmotive.“Theobviousdisadvantageisthatprivatesectoris

beholdentoshareholderstoprovidequarterlyreturns,”shesays.“Sotheworryisthatimportantneededcarethatisexpensivemightnotbeoffered.”



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

New ZealandAustralia

SwedenUK

3.86.36.37.510.011.312.513.813.813.815.016.318.818.820.021.321.323.826.326.326.326.328.830.030.030.031.333.833.833.835.036.336.337.540.040.040.041.342.543.8

47.547.547.550.0

53.856.357.560.060.0

63.865.067.570.0

73.875.076.378.880.080.081.381.383.883.883.883.886.387.587.590.090.090.090.090.091.392.593.895.096.397.5100.0

80=78=78

77767574

=71=71=71

7069

=67=67

66=64=64

63=59=59=59=59

58=55=55=55

54=51=51=51

50=48=48

47=44=44=44

434241

=38=38=38

37363534

=32=32

3130292827262524

=22=22=20=20=16=16=16=16

15=13=13

=8=8=8=8=8

7654321

Eveniflegalrestrictionsarerelaxed,barriersremain,saystheWHPCA’sDrConnor.“We’vehadvariousinitiativestoimproveaccesstoopioidsbutitturnsouttobequitedifficulttomakethedrugsavailableinindividualcountries,”hesays.Hurdlesincludethefactthatministriesofhealthhavetoapproveuseofthedrugs,importersandimportlicenceshavetobeinplace,andphysicianshavetobetrainedintheiruse.

EvenincountriesthatdowellintheIndexgapsareemerging.InarecentJournal of Palliative MedicinesurveyconductedintheUS,whichisinthetop10intheoverallIndex,respondentsin2011-2013weremorelikelytostatethattheirlovedonesreceivedinsufficientpainreliefthanrespondentsin2000.44

Nevertheless,inmanyplaces,advancesarebeingmade.First,theWHAresolutionsentanimportantsignal,acknowledgingthat“itistheethicaldutyofhealthcareprofessionalstoalleviatepainandsuffering,whetherphysical,psychosocialorspiritual,irrespectiveofwhetherthediseaseorconditioncanbecured”.45

InIndia,thepassingin2014oftheNarcoticDrugsandPsychotropicSubstances(Amendment)Actbyparliamentbringslegalclarityforphysicianswantingtoprescribeopioidstotheirpatients.46Whileworkremainstobedonetotraindoctorsandnurses,thepassingofthebillrepresentsamajorstepforwardforIndia,whichwascriticisedina2009HumanRightsWatchreportforfailingtofacilitateprovisionofopioidpainkillerstoitscitizens(anissuealsohighlightedinthereportaccompanyingthe2010EIUQualityofDeathIndex).47“Untilrecently,itwasverycomplicatedtoprocureanddispensemorphine,”saysDrBhatnagar.“Now,itwillbemucheasier.”



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





Quality of care =8 90.0



Humanresources


Communityengagement

Taiwan

Average

Highest

0

20

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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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Low demand for palliative care High demand for palliative care

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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

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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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