The Coalition to Transform Advanced Care · Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press

TheCoalitiontoTransformAdvancedCare(C-TAC)PolicyAgenda:OptionstoTransformAdvancedCare[April2015]

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Introduction Sinceitslaunchin2011,theCoalitiontoTransformAdvancedCare(C-TAC)hasconvenedleaders,experts,policymakers,andstakeholdersinthefieldofadvancedillness.Advancedillnessisdefinedaswhenoneormoreconditionsbecomeseriousenoughthatgeneralhealthandfunctioningdeclineandtreatmentbeginstoloseeffect–aprocessthatextendstotheendoflife.Individualswithadvancedillnesshaveoneormorechronicconditions,buttheirdeclineinhealthandfunctionismorepronounced,faster,andinmanycasesirreversible.Inshort,apersonwithadvancedillnesshasenteredthe“grayzone”betweentreatableandterminalillness.Thismayhappeninthecourseofanydiseaseandatanyagebutismorecommoninolderpopulations.Whenfacingadvancedillness,manyindividualsfallthroughthecracksbetweencurrentprogramsandproviders.Mostarenotyeteligibleforhospiceandmanywhodoqualifyarereluctanttoenrollortheirphysiciansareunwillingtoreferthem.1Comprehensive,highqualityadvancedillnesscareincludesabroadrangeofclinicalservices,includingpalliativecareandhospicecare,butisnotsynonymouswitheitherandnorisitend-of-lifecareonly.Innovationsinadvancedillnesscarearedemonstratingthatacoordinated,person-centeredapproachyieldsbettercare,greatersatisfactionand,asasidebenefit,lowercosts.2Buildingandscalingbestpracticemodelsforadvancedcaremanagementiskeytodrivingsystem-widechangeonthefederal,state,andlocallevels.C-TACisstrivingforchangeinthehealthcaresystemandlargerenvironmentbydisseminatingbestpracticesandprovensolutionsinadvancedcaredelivery,promotingprofessionaleducation,supportingpolicyandadvocacy,andbuildingpublicdemandandempowermentforqualityadvancedcare.Ourmissionistotransformadvancedillnesscarebyempoweringconsumers,changingthehealthdeliverysystem,improvingpublicandprivatepolicies,andenhancingprovidercapacity.ThispolicyagendahasbeendevelopedincollaborationwithC-TAC’smembership.Itreflectsareasofconsensusforfederalandstatepolicymakersandprivatestakeholderstoactontoimprovecareforindividualswithadvancedillnessandtheirfamilies.Theoptionsinthisbookareguidedbyfourcoreprinciples:

1Vig,E.,Starks,H.,Taylor,J.etal.2010.“Whydon’tpeopleenrollinhospice?Canwedoanythingaboutit?”JournalofGeneralInternalMedicine.25,10,1009-1019.2InstituteofMedicine.2014.DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesNeartheEndofLife.NationalAcademiesPress:WashingtonDC.

ForfurtherinformationonthePolicyAgenda,[email protected].

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1. Transformadvancedcareviamovementtovalue-basedpaymentandqualitymeasuredevelopment.

2. Aligntreatmentandcareobjectiveswithpatientgoals,values,andpreferencesacrosstime,setting,andmedicalcondition.

3. Engageindividualswithadvancedillness,theirfamilies,andcaregiverswithafullrangeofsupportsandservices.

4. Strengthenprofessionaleducationandengagementincollaborative,team-basedmodelsofperson-andfamily-centeredcaredelivery.

ThereisagrowingawarenessoftheneedtotransformadvancedcareintheU.S.andmoreopportunitiesarearisingtodoso.First,theInstituteofMedicine(IOM)recentlyreleasedareport,DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesNeartheEndofLife,3whichmadeanumberofrecommendationsonhowtoimprovecareforAmericansnearingtheendoflife.Second,therearebroadtransformationsinthehealthcaresystemunderwaythatofferopportunitiestospeedtheadoptionofeffectiveadvancedcareprograms.Specifically,themovementtopayprovidersforthevalueofcaretheydeliver–andnotjustthevolumeofservices–hasacceleratedgreatlyoverthelastfewyears.Inthiscontext,caringandsupportingthosewithanadvancedillnessisanimportantpartofthecaremanagementpuzzleforprovidersaimingtodeliverhighvaluecarethatbothimprovesqualityandreducescosts.ThealignmentbetweenbroaderhealthcaresystemtrendsandC-TAC’smissionhascreatedauniqueenvironmenttosignificantlyexpandandimprovecareforthosewithadvancedillness,drivehealthsystemtransformation,andpromotelongtermsustainabilityofthesystem.

SupportingtheAdvancedCareModelShiftingU.S.demographics,coupledwithalackofaccesstoevidence-basedadvancedcaremodels,willplaceincreasingpressureonthosewithadvancedillnessandtheirfamilies.In2000,12.4percentofAmericanswere65yearsorolder,butthisnumberisprojectedtoreach20.6percentby2050.4Thevastmajorityofpeoplewithadvancedillnesswillbeinthisagegroup,thoughadvancedillnesscanoccurfrombirthtooldage.Asournationages,expertspredictthatthenumberofnewcasesofdiseasethatareintensivetotreatandcareforwillalsoincrease,suchascancerandAlzheimer’sdisease.5Forinstance,over

3Ibid.4He,W.,Sengupta,M.,Velkoff,V.etal.2005.“65+intheUnitedStates.”AccessedOctober7,2014.http://www.census.gov/prod/2006pubs/p23-209.pdf5InstituteofMedicine.2014.DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesNeartheEndofLife.NationalAcademiesPress:WashingtonDC.

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one-thirdofMedicarebeneficiarieshave4ormorechronicconditions.Manyoftheseindividualswilleventuallyrequirelongtermcare.6Alongwiththesestatistics,thereisampleevidencethatindividualswithadvancedillnessandtheirfamiliesdonothaveaccesstohigh-quality,person-andfamily-centeredcare.ArecentHealthandHumanServices(HHS)initiativedirectedattheoneinfourAmericansthatareaffectedbytwoormorechronicdiseases,indicatedthattheseindividualsareatgreaterriskforunnecessaryhospitalizations,adversedrugreactionsandconflictingmedicaladvicethatmaybeoverwhelmingtopatientsandfamilies.7Toooften,theseindividualsandtheirfamilycaregiversareprovidedlittleguidancetomakeinformeddecisionsabouttheircare.Familiesandcaregiversdevoteincredibleamountsoftimetothecareoftheirlovedonesinthelastyearoflife–anaverageofnearly66hoursperweek.8Discussionsaboutendoflifeplanningareoftendelayeduntiltreatmentoptionsareexhausted.9Often,familycaregiversbelievetheyhavenootheroptionthantocall911fortransporttotheEmergencyDepartmentandadmissiontothehospital.10Onceadmitted,transfertotheICUwithouttheirinformedconsentisroutine.11Palliativecareandhospiceareoftenconsideredlastresorts,despitethefactthat,ironically,bothextendsurvivalcomparedto“usualcare.”12,13Thislackofaccesstoqualitycarecanextendintoendoflife.ACaliforniaHealthcareFoundation(CHCF)surveyfoundthatapproximately70percentofrespondentsstatedapreferencetodieathome;however,only32percentexperienceddeathathome,while42and18percentdiedinhospitalsandnursinghomes,respectively.14Otherstudieshavedocumentedsimilartrends,withonefindingaconcordancerateofonly37percentbetweenpreferredandactualsiteofdeath.15ThesestatisticsunderscoretheneedtoreformthewayadvancedillnesscareisprovidedintheU.S.

6CentersforMedicareandMedicaidServices.2012.“ChronicConditionsAmongMedicareBeneficiaries.”AccessedOctober7,2014.http://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Chronic-Conditions/Downloads/2012Chartbook.pdf7U.S.DepartmentofHealthandHumanServices.2010.MultipleChronicConditions—AStrategicFramework:OptimumHealthandQualityofLifeforIndividualswithMultipleChronicConditions.http://www.hhs.gov/ash/initiatives/mcc/mcc_framework.pdf8Rhee,Y,Degenholtz,H.,LoSasso,A.etal.2009.“Estimatingthequantityandeconomicvalueoffamilycaregivingforcommunity-dwellingolderpersonsinthelastyearoflife,”JournaloftheAmericanGeriatricsSociety,57,1654-1659.9KeatingN.,Landrum,M.,Rogers,S.etal.2010.“Physicianfactorsassociatedwithdiscussionsaboutend-of-lifecare.”Cancer,116,998-1006.10Smith,A.,McCarthyE.,WeberE.,etal.2012.“HalfofolderAmericansseeninemergencydepartmentinlastmonthoflife;mostadmittedtohospital,andmanydiethere.”HealthAffairs,31,6,1277-1285.11RadyM.&JohnsonD.2004.“Admissiontointensivecareunitatend-of-life:isitaninformeddecision?”PalliativeMedicine,18,8,705-711.12TemelJ.,GreerJ.,MuzikanskyA.etal.2010.“Earlypalliativecareforpatientswithmetastaticnon-small-celllungcancer.”NewEnglandJournalofMedicine,363,8,733-742.13ConnorS.,PyensonB,FitchK,etal.2007.“Comparinghospiceandnon-hospicepatientsurvivalamongpatientswhodiewithina3-yearwindow.”JournalofPainSymptomManagement,33,3,238-246.14CaliforniaHealthcareFoundation.2012.“FinalChapter:Californians'AttitudesandExperienceswithDeathandDying,”AccessedOctober7,2014.http://www.chcf.org/publications/2012/02/final-chapter-death-dying#ixzz3FTXnjduE15Fischer,S.,Min,S.,Cervantes,L.etal.2013.“WhereDoYouWanttoSpendYourLastDaysofLife?LowConcordanceBetweenPreferredandActualSiteofDeathAmongHospitalizedAdults.”JournalofHospitalMedicine,8,4,178-183.

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Advancedcareprovidesthisnewtransitionalpathwayfromcurativetocomfortcareandfillsavoidinthecontinuumofclinicalservicesavailabletopersonswithadvancedillness:

Advancedcareofferscomprehensiveservicesavailableacrosssettingsandtime,andcombinesactiveAdvancedcareofferscomprehensiveservicesavailableacrosssettingsandtime,andcombinesactivetreatmentwithpalliativecare,customizedtomatchpersonalvaluesandpreferencesastheyevolvethroughtheprocessofillnessandadaptation.Palliativecareisakeycomponentofthisoverallapproachtocaremanagement.Asdefinedbythe2014InstituteofMedicine(IOM)report,DyinginAmerica,palliativecarecanbedefinedas:“Carethatprovidesrelieffrompainandothersymptoms,supportsqualityoflife,andisfocusedonpatientswithseriousadvancedillnessandtheirfamilies.Palliativecaremaybeginearlyinthecourseoftreatmentforaseriousillnessandmaybedeliveredinanumberofwaysacrossthecontinuumofhealthcaresettings,includinginthehome,nursinghomes,long-termacutecarefacilities,acutecarehospitals,andoutpatientclinics.Palliativecareencompasseshospiceandspecialtypalliativecare,aswellasbasicpalliativecare.”16Theadvancedcaremodelactivelyintegratessettingsofcaredeliverythatarenowdisconnected,suchashospitals,primarycareofficesandclinics,specialists,nursinghomes,andhomeandcommunitysettings.Italsore-engineerscaredeliverybyleveragingthecapabilitiesofcurrentservicecomponentslikeinpatientandoffice-basedcasemanagement,palliativecare,caregiversupport,nursinghomes,homehealth,andhospice.Throughrepurposingandretraining,newcareteamscanincreaseclinicaleffectiveness,promotepatientchoiceandreduceoperationalcostsbyavoidingunwantedhospitaladmissionsandeliminatingunnecessaryservices,testsandprocedures.

16IOM(InstituteofMedicine).2014.DyinginAmerica:Improvingqualityandhonoringindividualpreferencesneartheendoflife.Washington,DC:TheNationalAcademiesPress.

Figure1.Complexcaremanagementprovidesintensivemedicalmanagementtopatientswhoareexpectedtorecover.Advancedcareprovidescomprehensivecaremanagementtopeoplewhohavepoorprospectsforfullrecovery.Hospiceprovidescaremanagementforpatientswhoareterminal.Palliativecareprovidessymptommanagementandsupportatanystageofillness.

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BarrierstoCareDeliveryIndevelopingthispolicyagenda,C-TAChasoutlinedkeybarrierstothedeliveryofhigh-qualityadvancedcare.Clinical,social,andculturalbarriersreinforcetheuncoordinatedandunsupportivecarecurrentlydeliveredtoindividualswithadvancedillnessandtheirfamilies.Thegoalofthepolicyoptionspresentedistoaddressthesebarriers,clearingthewayforthebuilding,replication,andimprovementofadvancedcareprograms.Themostsignificantbarrierscanbeclassifiedacrossfivecategories:1. LackofPerson-CenteredCareCoordinationinAdvancedIllness–Often,caredeliveryis

fragmentedanduncoordinated,withpatientstreatedacrossprovidersandsettingswithoutsufficientcommunicationabouttheirtreatmentorcoordinationamonginvolvedhealthprofessionals.Individualswithadvancedillnessarelefttonavigatethesystemwithlittlesupportfortheirfinancial,emotional,spiritual,andsocialneedsordiscussionandsupportforthechoicesthatshouldbemade.CaredeliverydependsonwhichbenefitstheyhavethroughMedicareoranotherpayer,whichprovidersarepermittedtoofferthoseservices,andwhichservicesareavailableinagivencommunity–andnotthepersonalgoalsandpreferencesofindividuals,families,andcaregivers.Thereisalsoalackofcomprehensivequalitymetricsthatcanproperlyassessthequalityofcaredeliveryandthepatientandfamilycaregiverexperience.

2. LackofWidelyAcceptedStandardsofCare–Theadoptionandimplementationofwidely

acceptedstandardsofcareforadvancedillnessarestillevolvingwithintheprofessionalcommunityandarenecessaryforasystemicapproachtoadvancedillnessstandardsofcaredelivery.Areasfordevelopmentinclude:1)promptidentificationofindividualswithadvancedillnessandtheirfamilycaregivers,2)counselinganddiscussionofindividualvalues,goals,preferences,andtreatmentoptionsattimeofinitialdiagnosesandduringthetreatmentprocess,3)respectforindividualchoicesthattailorstreatmentplanstovalues,goals,andpreferences,4)timelyandappropriateuseofadvancedcareservices,and5)support,reliefofpainandotherdistressingsymptoms,andcounselingappropriatetocircumstances.

3. PaymentBarriers–FFSpaymentmodelswithmisalignedincentivesimpedecarecoordination

acrossprovidersandsettings–andhigh-qualityandhighvaluecareasaresult.Burdensomeregulationsandstatutoryprovisionscanpreventprovidersandinterdisciplinaryteamsfromoptimizingworkplaceefficienciesandmaylimitpaymentstofamilycaregivers.Allofthesefactorscreateanopportunitytoimproveaccessandqualitywithoutincreasingcost.Fortunately,thesegoalsandpreferencescanbeachievedbyaddingchoicesforindividualsandtheirfamilies,notrestrictingservices.

4. NeedforPublicEngagement–Forarangeofreasons,individualswithadvancedillness,andtheir

familiesandcaregiversoftendonothaveadvancecareplansnorhavetheydiscussedfutureplansofcarewithateamofproviders.Theyoftenlackaccesstoproperadvancecareplanningtoolsor

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areunawareoftheresourcesalreadyavailabletothemintheircommunities.Compoundingthisproblem,providersareoftenunawareordonotengageindiscussionsregardingtreatmentandsupportoptionsuntillateron–ortoolate–inthecourseofillness.Lastly,careplansareoftenpoorlydocumentedordifficulttoretrieveinelectronicmedicalrecords.Manystatesalsohaveburdensomelawsandregulationsinregardstothetransferabilityandportabilityofdirectivesacrossstatelines.

5. LimitedCaregiverResources–Familiesandcaregiversoftenlackcomprehensivefinancial,emotional,spiritualservicestosupportthemselveswhileprovidingfortheirlovedones.Theymayalsobeunawareofavailableinformationandresourcestohelpguidethemthroughthecareprocess.

6. WorkforceLimitations–TheexistinghealthcareworkforcerequiresadditionalsupportandpreparationtoappropriatelycareforthegrowingnumberofAmericanswithadvancedillness.Constraintsintheneedednumberanddistributionofnurses,primarycarephysicians,directcareworkers,socialworkers,andspiritualadvisorsinthehealthcaresettingmaypreventindividualsfromreceivingthecaretheywant.Manycareprofessionalsmayneedadditionaltrainingtoprovidecaregivingandsupportiveservices(e.g.medicationmanagementandcareplanningandtransitions)tothosewithadvancedillness.

Belowareaseriesofpolicyoptionsdesignedtoaddressthesebarriersandsupportthefourcoreprinciplesoutlinedabove.Thepolicyoptionsoutlinedbelowcanbeaccomplishedthroughdifferentadvocacyavenuesincludingpublicandprivatepartnershipsinmanycases.WhilesomepolicychangesmayrequireCongressionalaction,manycanbeaccomplishedviaregulationandatthestatelevel.Inparticular,statesareleadingmanyoftheinnovativechangesinhealthcaretodaythroughMedicaidprograms,StateInnovationModel(SIM)grants,andotherstate-leddemonstrations.Federalactors,states,andprivateentitiesareessentialtotransformcaredeliveryforindividualswithadvancedillness–andthepolicyoptionsinthisdocumentaimtoleverageallofthesestakeholderstodrivemeaningfulchange.

I.Transformadvancedcareviamovementtovalue-basedpaymentandqualitymeasuredevelopmentThecurrentfragmentedanduncoordinatedcareindividualswithadvancedillnessoftenreceiveisdrivenbyafee-for-service(FFS)paymentsystemwithmisalignedincentivesthatrewardsvolumeovervalue.Thecurrentsystemisalsooutdatedintermsofwhatservicesarereimbursedandwhenindividualsareeligibleforcertainservicesandbenefits.Forinstance,toqualifyforhospice,Medicarerequiresabeneficiarytobecertifiedaslikelytodiein6months,andforego“curative”treatment,astandardwhichisoutdatedandcounter-productivetoprovidingperson-centeredcare.

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However,themovementtotransitionthecurrenthealthcarepaymentsystemtoonethatisvalue-basedisunderway.Inthisnewpaymentparadigm,providersarerewardedforimprovingquality,improvinghealthoutcomes,andreducingcosts.Newpaymentanddeliveryreformprograms,demonstrations,andpilotsarebeingtestedandimplementedacrossthecountrywithbothpublicandprivatepayers.Thegoalsofcomprehensiveadvancedcaremanagementareinlinewiththenewpaymentparadigmthataimstodrivegreatervalueinthehealthcaresystem.Unfortunately,fewpublicpayermodelsarefocusingonadvancedillnesscarethatisprovidedupstream–beforeacrisisoccurs.Supportingitsinclusioninpatient-centeredmedicalhome(PCMH),bundling,accountablecareorganization(ACO),andglobalpaymentinitiativesiscriticaltotransformationofadvancedcare,aswellasoverallsystemtransformation.

Barrier PolicyObjective Solution AdvocacyActors

Lackofindustry-widestandardsforadvancedillnessmanagementandnarrowlydefinedpaymentstructuresimpedetheadoptionofhighquality,well-coordinated,andperson-centeredmodelsofcaredelivery

Promoteadvancedcaremanagementthroughpaymentanddeliveryreforms

! Buildonexisting

federalandstatedemonstrationsandprogramstoreplicateandscaleeffectiveadvancedcareprograms.StatesandHHSshouldmakescalingandreplicatingeffectiveadvancedcareprogramsapriority.Forinstance,CMMIcouldworkwithStateInnovationModel(SIM)grantees,asthesegrantsofferopportunitiestochangecaredeliveryacrosspayers.Inaddition,InnovationAcceleratorProgram(IAP)fundscouldbeusedtoassiststateswithimplementingadvancedcareprograms.Last,theMoneyFollowsthePersondemonstrationhassuccessfullymovedindividualsawayfrominstitutionalcareandcouldincludetheoption

" HHS/CMMI" States

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tooffereffectiveadvancedcareprograms.

! Increasefundingfor

demonstrationstoexaminestrategiestoimprovecoordinationofcareacrosstime,caresettings,anddiagnoses,andprovidefundingtoscalesuccessfulinnovationsnationally.CMMIshouldfunddemonstrationsinordertotestinnovativestrategiesandapproachestocaringforthispopulation.

! ProvideincentivesforMedicaidprogramstoincreaseestablishmentanduseofadvancedcareprograms.CMSshouldpilotincentivesforstateMedicaidFFSandmanagedcareprogramstoadoptadvancedcareprograms.CongresscouldprovideincentivesforFFSandmanagedcaretoadoptevidence-basedadvancedcaremodels(e.g.increaseinFMAPmodeledaftertheincreaseforcoveringpreventiveserviceswith$0dollarcostsharing,orrequiringmanagedcareorganizationstodosoaspartofMedicaid

" HHS/CMMI

" Congress" HHS/CMMI" States

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contracts).

! Createtransitionpaymentstofacilitatedevelopmentandadoptionofadvancedcareprograms.Provideinitialpay-for-performancepaymentforadvancedcaremanagementservicesacrossthecontinuumofhealthcaresettingsthatmeetdefinedqualitymetrics.Transitionthepay-for-performancepaymentsystemtomodelswithsharedriskasadvancedcareclinicalmodelsevolveandasbroadervalue-basedpaymentsreplacefee-for-service.IncorporateadvancedcaremeasuresintotheMedicareAdvantage(MA)Starsratingsystemtoincenttheprovisionsofadvancecareplanning–includingmeasuresonaccesstoadvancecareplanningservices,completionofadvancedirectives,advancedillnesscarequality,andperson-andfamily-centeredness.

! Includeincentivesor

requirementsforproviderstoestablishordeliveradvancedcareprogramsthroughMedicarevalue-basedpaymentprograms.CMSshould

" Congress" HHS/CMS" NQF" Congress" HHS/CMS" States

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promotetheadoptionofadvancedcareprogramsviaMedicarepaymentanddeliveryreforms,includingtheMedicareSharedSavingsProgram(MSSP),BundledPaymentCareInitiative(BPCI),Patient-centeredMedicalHomes(PCMHs),andotherswhereappropriate.Thesenewfundingmodelsprovidefinancialincentivesforprovidersandpayerstomoreeffectivelymanageadvancedillnessandbuildfunctionalandstaffcapacities.

Lackofcomprehensivequalitymetricstoproperlyassesscaredeliveryandrewardvalueratherthanvolume-basedcare

Enhancequalitymeasuredevelopment

! Developandgather

consensusaroundcomprehensivequalitymetrics(process,outcomesandpatient/familyexperience)toassessthequalityofcaredeliverythroughpublic-privaterelationships.Metricsshouldassesswhethertreatmentwasconcordantwithindividualandfamilygoalsandpreferencesandthequalityoftheadvancecareplanningdiscussions.CMSandprivateplansshouldbuildonexisting14evidence-basedqualitymeasuresordomainsendorsedbyNQFforpalliativeandEOLcare.

" Congress" HHS/CMS" NQF" Private

Stakeholders

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! CreateanddevelopconsensusaroundmetricsforappropriateandtimelyreferraltohospiceinMedicare.Thefeasibilityofclinicalstandardsfortimelierreferraltohospicecareshouldbestudied,andasappropriate,developed,andimplemented.

! Createanddevelop

consensusaroundstandardmetricsappropriateforpersonswithadvancedillness.Creatingmetricsspecifictothosewithchronicdisablingconditionswillsupportthelongitudinalprovisionofservicestomaintainfunctionortoslowdecline,ratherthanrequiringimprovementforservicestocontinue.

! Encouragepublicreportingofpalliative,endoflife,andadvancedcarequalitymeasuresthroughFederalhealthprograms.CollectingandreportingdataonadvancedcarethroughallFederalhealthprogramswillprovideacomprehensiveunderstandingofcurrentstateofcare,focusprovidersonimprovingadvancedcare,andallowforatransitiontovalue-basedpaymentforadvancedcare.Thisshouldalsotrackprogressonimprovingadvancedcareandmeasureitsimpacts.


Stakeholders" Congress" HHS/CMS" NQF" Private

Stakeholders" Professional

Associations" Congress" HHS/CMS" States" Professional

Associations

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Regulatoryandadministrativebarrierstoadoptingandimplementingeffectiveadvancedcareprograms

Utilizeresearchandqualitymeasuredevelopmenttofacilitateinclusionofadvancedcareinnewpaymentmodels

! Developrequirements,

standards,andproceduresforaccreditationofhospital-andcommunity-basedpalliativecareprograms.Standardizedaccreditationwillhelpacceleratepalliativecarequalityimprovementinitiativesthroughouttheacuteandpost-acuteserviceareas.Increasepalliativecareintegrationintocaremodels.

! RevisecriteriaforhospiceeligibilityinMedicare,andexamineaccesstohospiceforMedicaidbeneficiaries.Criteriashouldtakeintoaccountcurrentevidenceontheroleandeffectivenessofhospicecareforindividualswithadvancedillness.HospicecareiscurrentlyanoptionalserviceforstateMedicaidprograms,whichshouldbeexaminedtodeterminewhetheraccesstothefullcontinuumofadvancedcareandhospiceservicesforthosewithseriousillnessisimpededasaresult.

! Amendpaymentrulesfor

telehealth.Currentpaymentrulesfortelehealth,andregulatorybarriershaveimpededthewidespreaduseoftheseservices.However,telehealthuseinadvanced

" HHS/CMS" Private

stakeholders(NQF,JCAHO)

" Congress" HHS/CMS" Congress" HHS/CMS" States

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careprogramscouldpromotecarecoordinationacrosshomes,acuteandPAC,andoutpatientsettings.Paymentshouldbeprovidedforservicesthatmeetcriteriaforcarecoordinationforadvancedcare.

II.Aligntreatmentandcareobjectiveswithpatientgoals,values,andpreferencesacrosstime,setting,andmedicalconditionIndividualswithadvancedillnessandtheirfamiliesshouldbeengagedinanongoingcareplanningprocess.Advancecareplanningisadynamicprocessthatoccursoverthecourseofanillness,andinvolvesunderstanding,reflectingon,anddiscussingfuturemedicaldecisions,includingendoflifepreferences.17Promotingpublicknowledge,especiallyamongthosewithchronicillnessandMedicarebeneficiaries,onthefullarrayofadvancecareplanningprocessesandtoolswillhelppromptongoingdiscussionsbetweenindividualsandaninterdisciplinaryteamofproviders.Thesediscussionsarenecessaryforbotharticulatingcaregoalsandpreferencesandforsuccessfullycapturingthoseplansinaformatthatcanbesharedandupdated.A2012surveyfoundthat42percentofrespondentshaddiscussionsaboutendoflifeissues,butonlyabouthalf–21percent–hadputanycaredirectivesinwriting.18Alsotelling,while77percentofrespondentssaidtheywould“probably”or“definitely”wanttodiscusstreatmentattheendoflifewiththeirphysician,90percentsaidtheirphysicianhadneveraskedthemabouttheissue.19Inparticular,improvingknowledgeandaddressingliteracyonadvancedillnessissuesamongtargetedgroupsiscritical.Astudyofapproximately800patientsfrom55to74yearsofagefoundthathalfofthosewithadequatelevelsofhealthliteracy,approximately25percentwithmarginalliteracy,and12percentofthosewithlowliteracyreportedtheyhadadvancedirectives.20Peoplegenerallyhavelittleawarenessorunderstandingofadvancedillnesstopics—forinstance,78%donotknowwhatpalliativecareis.Theproblemiscompoundedwhensimilarwordsareinterpreteddifferently.Insurveysofadultsoverage25,"seriousillness"connotesterminalillnessto18%,while"advancedillness"signifiesterminalillnessto

17HonoringChoicesWisconsin.2014.“GlossaryandStyleGuide.”18CaliforniaHealthcareFoundation.2012.“FinalChapter:Californians'AttitudesandExperienceswithDeathandDying,”AccessedOctober7,2014.http://www.chcf.org/publications/2012/02/final-chapter-death-dying#ixzz3FTXnjduE19Ibid.20Waite,K.,Federman,D.,McCarthy,R.etal.2013.Literacyandraceasriskfactorsforlowratesofadvancedirectivesinolderadults.JournaloftheAmericanGeriatricsSociety,61,3,403-406.

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36%.21Anotherstudyfoundlessthanoneinfivehaveheardthetermspalliativecare(17%)andPOLST(PhysiciansOrdersforLifeSustainingTreatment)(13%);however,hospice(73%)anddo-not-resuscitate(DNR)orders(63%)aremorefamiliarterms.22However,researchhasshownthateffectivecommunicationamongproviders,patientsandtheirfamiliescanimprovemedicaloutcomes,increasepatientandfamilysatisfactionandreduceburdenonthehealthcaresystem.23,24,25,26,27Empoweringindividualswithadvancedillnessandtheirfamilieswithknowledgeonrelevantissueswillallowthemtheirproviderstoaligntreatmentoptions,aswellaspsychosocialandcommunitysupportservices,withpersonalpreferences,values,andbeliefs.Theresultsofaneffectivedecision-makingprocesscanbedocumentedinavarietyofways,includingadvancedirectives.Manyformsandtoolsareavailabletodaythataresimpleforindividualsandtheirfamiliestodevelopandmanagewitharangeofproviders.However,thesedocumentsmustbeaccessibleatanytime,setting,orcarelocationtoensurethatindividualwishesandpreferencesareproperlyfollowed.AstudyofEpicCare’sambulatoryEHRsystemfoundthateventhough51percentofindividuals65yearsofageorolderhadanadvancecareplanningdocument,onlyaboutone-thirdofrecordsincludedascannedcopyofthedocumentwithsignaturesthatarerequiredtomakethedocumentlegallyvalid.28Comprehensiveandinteroperableelectronicmedicalrecords(EMRs)arekeyinthiseffortiftheyareup-to-dateandreflectrecentcaregoalsandpreferences.Theserecordsshouldbetransferrableacrossthehome,hospital,andpost-acutecaresettings,andshouldprotecttheprivacyofpatientsandtheirfamilies.

Barrier

PolicyObjective

Solution

AdvocacyActors

Lackofcoverageforpatient-

Improveaccesstocareplanningservices

! MedicareandMedicaid

shouldcovervoluntaryadvancecareplanning

" Congress" HHS/CMS" States

21CentertoAdvancePalliativeCare.2011.“2011PublicOpinionResearchonPalliativeCare.”AccessedNovember6,2011.http://www.capc.org/tools-for-palliative-care-programs/marketing/public-opinion-research/2011-public-opinion-research-on-palliative-care.pdf22Calabrese-Eck,L.2013.“Understandingconsumerattitudes,barriers,andword-stringsaroundadvancedcare.”PresentedJune27,2013,attheConsumerResearchSymposium.Washington,DC.23Gerteis,M.,Edgman-Levitan,S,Daley,J.etal.1993.ThroughthePatient'sEyes:UnderstandingandPromotingPatient-CenteredCare.Jossey-BassPublishers:SanFrancisco.24LillyCM,DeMeoDL,SonnaLA,etal.2000.“Anintensivecommunicationinterventionforthecriticallyill.”TheAmericanJournalofMedicine,109,6,469-475.25LautretteA,DarmonM,MegarbaneB,etal.2007.“AcommunicationstrategyandbrochureforrelativesofpatientsdyingintheICU.”NewEnglandJournalofMedicine,356,469-478.26CurtisJR,TreecePD,NielsenEL,etal.2008.“Integratingpalliativeandcriticalcare:evaluationofaquality-improvementintervention.”AmericanJournalofRespiratoryCriticalCareMedicine.178,3,269-275.27MosenthalAC,MurphyPA,BarkerLK,etal.2008.“Changingtheculturearoundend-of-lifecareinthetraumaintensivecareunit.”JournalofTrauma,64,6,1587-1593.28Wilson,C.,Newman,S.,Tapper,S.etal.2013.“Multiplelocationsofadvancecareplanningdocumentationinanelectronichealthrecord:Aretheyeasytofind?”JournalofPalliativeMedicine,16,9,1089-1094.

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providerdiscussionsandforthecreationofadvancedirectives

services.Cliniciansshouldbepaidforupstreamadvancecareplanningconversationswithbeneficiariesledbyaninterdisciplinaryteamwithphysicianinput.

! Increasereimbursements

forvoluntaryadvancecareplanning.IncorporateCurrentProceduralTerminology(CPT)codesforadvancecareplanningconsultationsintoMedicareFFSbillingforphysicianandnon-physicianproviders.Rate-settingapproachesformanagedcareplans(e.g.throughMedicareAdvantage)andcapitatedentitiesshouldrecognizeandencouragethosecorebenefits.

" Congress" HHS/CMS

Lackofpublicknowledgeregardingadvancecareplanning

Enhancepublicknowledgeofadvancecareplanningandtreatmentoptions

! Developandpromote

publicknowledgeonthevalueofadvancecareplanning.Expandpublicknowledgeonadvancecareplanningissuesandservicesfordiversepopulationsandthevalueofengaginginadvancecarediscussionswithproviders.Authorizeandsupportthelaunchoftargetedoutreachandeducationinpartnershipwithstakeholders,suchascommunity-andfaith-basedorganizationsthatbuildsacommonunderstandingofwhatadvancecareentails,howtohavetheconversationsbetweenindividualsandtheirfamilies,andproviders,and

" Congress" HHS/CMS" Private

stakeholders" States

Leslie Brady� 4/18/2016 11:55 AMComment [1]: Removethissectionasitisnolongerrelevant.Leslie Brady� 4/18/2016 11:56 AMComment [2]: Replacewith“TrackandanalyzenewCurrentProceduralTerminology(CPT)codesforAdvancedCarePlanning.Analyzeneedforadditionalcodesforadvancedcareplanning.

17

itsvalue.

! ReviseMedicare&YouHandbook.CMSshouldfurtherdevelopandenhanceinformationonadvancecareplanningintheMedicare&YouHandbooktoensurethe65+populationunderstandsthevalueofadvancecare,therangeofoptionsavailable,andhowtoengageinconversationswithproviders.

! DisseminatePSDA

compliancebestpractices.AlthoughthePatientSelf-DeterminationAct(PSDA)requirestheprovisionofinformationaboutadvancecareplanning,implementationvarieswidely.Federalofficials,theJointCommission,andhospitalassociationsshouldidentifyanddisseminatebestpracticesconcerningPSDAcomplianceandimprovementandthosepracticeswhichactuallyhelpusdefineadvancecareplanning(i.e.knowingandhonoringindividuals’wishes).

" Congress" HHS/CMS" HHS/CMS" Private

stakeholders

18

Careplansmaynotbereviewedasneededortransferrableacrosscaresettings

Facilitatedocumentationofvariouscomponentsofcareplansandensureaccessibilityacrossprovidersandsettings

! Requireorincentthe

creationofinteroperableEHRsthatfacilitateadvancecareplanningacrosssitesofcare,providers,andthroughthecourseofanillness.AspartofStage3MeaningfulUse,requireorincentrecordingofadvancedcareplans,advancedirectives,andverificationthatpreferencesarerecorded,andthatinformationisaccessibleinhomeorcaresettings.Specifically,EHRsshoulddocumentthefollowing:1)designationofasurrogateordecisionmaker,2)individualcaregoalsandpreferences,3)advancedirectives,and4)medicalordersforlife-sustainingtreatmentfortargetedpopulations.

! Increaseportabilityof

advancedirectives,POLSTformsforthosethatareseriouslyill,livingwills,anddurablepowersofattorney(DPAs)acrosshealthsystemsandfromstatetostate.Regardlessofwhereapatientreceivescare,theircarepreferencesshouldalwaysbeeasilyaccessible.Policymakersshouldinvestigateandincentthedevelopmentoftools(e.g.nationalregistries)thatallowforarangeofadvancedirectiveformatstobeaccessedindifferentcaresettingsfromthird-partysources,

" Congress" HHS/ONC" Congress" HHS/ONC" States

19

includingfrommanagedcareplans.Legalbarrierstohonoringpreferencesatthestateandfederallevels,suchasstatutorilymandatedforms,shouldberepealed.

! Identifybestpracticesinadvanceandurgentcareplanning.Statelicensingandsurveyofficials,ombudsmanorganizations,andcarefacilitiesshouldworkcooperativelytodevelopcareplanningapproachesthatmeetregulatoryrequirementsandreflectthebestmodelsofresident-andfamily-centeredcarethroughcarefuldelineationofgoalsofcareuponadmission,integratingeffectivecareplanningintoperiodicfamilymeetings,anddocumentingcareplansinaclearandactionablefashion.Careplanningisneededwhenadvancedillnessisdiagnosedandnotjustwhenindividualsareadmittedtoacutesettings,suchasanintensivecareunit(ICU).ICU-relatedcareplanningisoftentoodelayed.Hospitalassociations,criticalcarephysicians,palliativecarespecialists,andbioethicsorganizationsshoulddevelopbestpracticesfortimelycareplanning.

" States" Private

Stakeholders

20

III.Engageindividualswithadvancedillness,theirfamilies,andcaregiverswithafullrangeofsupportsandservicesFamilycaregivershaveincreasinglyexpandedrolesandresponsibilitiesincaringforthosewithadvancedillness.Asaresult,theyoftenexperiencesignificantfinancial,emotional,physical,andpsychologicalburden.Approximately65millionAmericans–nearly30percentofadults–arecaregiversthatprovide20hoursofcareperweekonaverage,includingassistancewithactivitiesofdailyliving.29Duringthelastyearofanillperson’slife,familycareaveragesnearly66hoursperweek.30Whiletheburdentodayoncaregiversissignificant,itisonlyprojectedtoworsenastheU.S.populationages.Theratioofpotentialcaregivers,aged45to65years,forindividuals80yearsofageorolderisprojectedtodecreasefrom7:1to4:1from2010to2030,andto3:1by2050.31Thereisinsufficienttrainingandsupportforthisshiftofmedicalcarefromthenursetothefamilycaregiver.Inmanycases,caregivershavehadnotrainingtoperformthesetasksandhavetolearnontheirown.32Arecentreportissuedacallforcollectiveaction,fromacrossprofessions,tosupportfamilycaregivers.33Toreducetheseburdens,caregiversandfamiliesshouldhaveaccesstoafull,comprehensiverangeofbenefitsandresourcesto:[1]informandeducatethemregardingtheirlovedones’conditionandavailableresourcesandtoolsand[2]provideacompletearrayofservicestoaddresstheiremotional,psychological,physical,andfinancialneeds.

Barrier

PolicyObjective

Solution

AdvocacyActors

Lackofregularassessmentsofcaregiverneeds

EnhanceassessmentsoncaregiverneedsthroughFederalhealthprograms

! RequireMedicaidHCBS

Waiverprogramstocollectdataoncaregiverneeds.Requirethatfamilycaregiverneedsbeincludedin


29NationalAllianceforCaregiving.2009.CaregivingintheU.S.AccessedOctober15,2014.http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf30Rhee,Y,Degenholtz,H.,LoSasso,A.etal.2009.“Estimatingthequantityandeconomicvalueoffamilycaregivingforcommunity-dwellingolderpersonsinthelastyearoflife,”JournaloftheAmericanGeriatricsSociety,57,1654-1659.31Redfoot,D.,Feinberg,L.,&Houser,A.2013.Theagingofthebabyboomandthegrowingcaregap:Alookatfuturedeclinesintheavailabilityoffamilycaregivers.AccessedOctober15,2014.http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/baby-boom-and-the-growing-care-gap-insight-AARP-ppi-ltc.pdf32Reinhard,S.,Levine,C.,&Samis,S.2012.“HomeAlone:FamilyCaregiversProvidingComplexChronicCare.”AccessedNovember6,2014.http://www.aarp.org/home-family/caregiving/info-10-2012/home-alone-family-caregivers-providing-complex-chronic-care.html

33Ibid.

21

assessmenttoolsforMedicaidHomeandCommunity-basedServices(HCBS)waiverprogramswhenfamilycaregiversarerequiredtoexecutethetreatmentplan.Thisincludesaconversationwiththefamilycaregiverhim/herself.ThecaregiverassessmentshouldbepartoftheEHR.

! UseMedicareannualvisitstoassessfamilycaregiverneeds.EncourageMedicareprovidersthatconductannualvisitstoassessifbeneficiariesarealsocaregiversandpotentialriskstotheirhealthfromcaregiving,includingphysicalstrain,emotionalstress,anddepression.

" Congress" HHS/CMS

Lackofcompleteinformationandeducationalresourcesforcaregivers

Createanddisseminateinformationalresourcesaimedatcaregivers

! Provideafullrangeof

informationalresourcestodirectcaregiverstoavailablesupports.Totheextentpossible,leverageexistingresources,includingonlinesources,todirectcaregiverstowardsthepropersupportsandresources.TheOlderAmericansActcanbeamendedtoauthorizeincreasedfundingforfamilycaregivingtrainingmaterialsonadvancedcare,includingtherangeoftreatmentandplanningoptionsthatcanbeconsidered.

" Congress" HHS" Stakeholders

Lackofhealthandcommunityservicesandsupportsfor

Promoteprovisionofperson-andfamily-centeredcarethatmeetscontinuumof

! Assesscontinuumofneeds

individualsandcaregivershavetoprovideperson-centeredcare.Individuals

" Congress" HHS/CMS" Private

stakeholders

Leslie Brady� 4/26/2016 9:02 PMComment [3]: ShouldthisberemovedsincetheActisnowlawforanother3years?

22

individualsandcaregivers

needs withadvancedillnesshavebothhealthandsocialneedsinmanycases.Whenindividualsarenotconnectedtocommunity-basedandsocialserviceorganizationstomeetnon-medicalneeds(e.g.food,transportation,etc.),healthoutcomescanbenegativelyaffectively.Advancecareplanningprogramsshouldassesscontinuumofhealthandsocialneedsandemploypopulationhealthmanagementstrategiestolinkindividualstonecessarysupportsandservices.

Financialburdenoncaregivers

Promotefinancialsupportforcaregivers

! Requirefinancialsupportforcaregivers.AmendInternalRevenueCodetoallowfamilycaregiverstoapplyforataxcrediteachtaxableyear.

✓ Congress

IV.Strengthenprofessionaleducationandengagementincollaborative,team-basedmodelsofperson-andfamily-centeredcaredeliveryTransformingadvancedcaredeliveryrequiresthatcliniciansanddirectcareworkersreceivespecializedtrainingacrosstheadvancedcarecontinuum.Targetededucationaltoolsandresourcescouldinformthecareteamonthespectrumofadvancedcareinterventionsacrossthecarecontinuum.Whilemanycurrenttrainingprogramsarefocusedonpalliativeandhospicecare,expandingprofessionaleducationandtrainingresourcesforallmembersofthecareteamonthefullspectrumofadvancedcareinterventionsisnecessarytosuccessfullymanageadvancedillness.TheIOMreport,DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesNeartheEndofLife,foundtwomajorworkforcegaps.First,knowledgegainsoncaringforthosewithadvancedillnesshavenotgenerallyresultedinknowledgetransfertoprovidersonthefrontlines.34Second,therecontinuestobeaninsufficientnumberofpalliativecareproviders.35A2008surveyof128U.S.medicalschoolsfoundthat34InstituteofMedicine.2014.DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesNeartheEndofLife.NationalAcademiesPress:WashingtonDC.35Ibid.

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23

oftheapproximately60thatrespondedonly14hadarequiredcourseonpalliativecare.36Mostimportantly,teachingpalliativecarehasanimpactonmedicalstudents.Anassessmentofonedidacticprogramfounda23percentimprovementinstudentknowledgeanda56percentimprovementintheirfeelingsofcompetenceonthetopic.37Unfortunately,insufficienttrainingamongprovidersmaybecontributingtoadisconnectbetweenpatientpreferencesandtreatmentoutcomes.Forinstance,inonestudy92percentofindividualshadstatedapreferenceforcareforumsoncomfort,buttheresearchersfoundthatthiswas“poorlycorrelatedwithtreatmentdelivered.”38Ontheotherhand,accesstoastableproviderthatcancoordinatecareacrosssettingshasbeenshowntoimproveendoflifecareforcancerpatients.Aliteraturereviewofendoflifecarecoordinationforindividualswithcancerfoundthatcontinuedinvolvementofprimarycarephysicianswasvaluable,thatitinfluencedhowcaregiversfeltabouttheirexperienceandoutcomes,andperhapsmostcriticallyhelpedpatientcommunicationandemotionalsupportneeds.39

Barrier

PolicyObjective

Solution

AdvocacyActors

Workforcesupplyissuesandthelackofadvancedillness-focusedtraining

Enhanceprofessionaleducationandengagement

! Establishcareer

incentiveawardsviagrantsandcontractsforprovidersthatteachorpracticepalliativecareforaminimumnumberofyears.Incentivesforthosethatteachorpracticepalliativecarecouldincludeloanforgivenessorotherfinancialincentives.

! Increaseinterdisciplinarytrainingprogramsformedicalfellowsand

" Congress" Congress" Professional

associations

36VanAalst-Cohen,E.,Riggs,R.,&Byock,I.2008.“Palliativecareinmedicalschoolcurricula:AsurveyofUnitedStatesmedicalschools.”JournalofPalliativeMedicine,11,9,1200-1202. 37VonGunten,C.,Mullan,R.,Nelesen,M.etal.2012.“Developmentandevaluationofapalliativemedicinecurriculumforthird-yearmedicalstudents.”JournalofPalliativeMedicine,15,11,1198-1217.38Kelley,A.,Ettner,S.,Morrison,Q.etal.2011.“Determinantsofmedicalexpendituresinthelast6monthsoflife.”AnnalsofInternalMedicine,154,4,235-242.39Han,P.&Rayson,D.2010.“Thecoordinationandprimaryandoncologyspecialtycareattheendoflife.”JournaloftheNationalCancerInstituteMonographs,40,31-37.

24

residents.Exemptpalliativemedicinefellowshipsfromgraduatemedicaleducationcapsorloancancellationprograms.Establishtrainingprogramsthatincludeanemphasisonprovider-patientcommunicationonadvancecareplanning,

! Evaluateand

disseminatebestpracticesondevelopmentofinterdisciplinaryteamsinadvancedcare.HHSshouldfundstudiesonhowtomosteffectivelyadvanceandstructureteamsandmakethemosteffectiveuseofproviderspracticingatthetopoftheirlicenses.Disseminatefindingsthroughtargetedphysicianandotherhealthprofessionalsocieties,healthsystems,andpayers.

! Integratespecialized

andinterdisciplinarytrainingprogramsintomedicalschoolcurriculums.Establishguidelinesforaminimumamountoftrainingonadvancedillnesscare,includinganemphasisonprovider-patientcommunication,painandsymptommanagement,andpsychosocialandfamilycaregiver

" Congress" HHS" Privatestakeholders" Privatestakeholders" Professional

associations

25

assessments,asarequirementforobtainingadegreeinbothallopathicandosteopathicmedicine.

Lackofincentivesforincreasedtraining

Extendfinancialsupportforstatesandselectproviders

! Establishfederalgrant

programtodeveloppalliativecareandhospiceeducationprogramming.Authorizeandfundagrantprogramforstatesandprivatestakeholderstodeveloppalliativecareandhospiceeducationprogramming.

! Provideincentivesto

certifydirectcareworkers.Authorizeandfundgrantstocarefacilitiesto:(1)offercontinuingtrainingandvaryinglevelsofcertificationtoemployeeswhoprovidedirectcareand(2)providebonusesorotherbenefitstoemployeeswhoachievecertification.Thesegrantscouldalsosupportspecializedworkforcetraininginsymptomassessmentandmanagement.

" Congress" HHS" Privatestakeholders" Congress" HHS" Privatestakeholders

Lackofcontinuingmedicaleducationrequirements

Promoteongoingprofessionaleducationandengagement

! Promotecontinuing

educationforphysicians,nurses,andotherhealthprofessionals.RequirephysiciansincategoryI,andotherhealthprofessionalstocomplete

" Privatestakeholders" Professional

Associations

26

atleast2hoursofCMEdevotedtoadvancedcaremanagementeverytwoyears.

ConclusionMostAmericanstodayarelivinglongerandhealthierlivesthaneverbefore.Yetatsomepointthegreatmajoritywillfaceadvancedillness.Shiftingdemographicsandnewknowledgeaboutthegapbetweentheneedsandrealitiesofcarethatthosewithadvancedillnessreceivehaveresultedinrenewedenergyandinterestinadvancedcare.ClosingthisgapwouldhelpaddresstheneedsofagrowingnumberofAmericansthatneedandwantseamless,person-andfamily-centered,coordinatedcarethathelpsthemliveashappily,comfortably,andproductivelyaspossible.ThispolicyagendaprovideswiderangingoptionsthatwouldhelptransformcareforAmericanswithadvancedillnessandtheircaregiversandfamilies.Theopportunitytooffercarethatalignswithindividuals’personalvaluesandgoals,andthatsupportstheirfamiliesandcaregiversthroughthejourneyiswithinourreachifstakeholdersworkwithoneanother,andfederalandstatepolicymakerstodrivecomprehensivechange.AppendixAbridgedChartofPolicyOptionsPolicyObjective Solution AdvocacyActorsPromoteadvancedcaremanagementthroughpaymentanddeliveryreforms

Buildonexistingfederalandstatedemonstrationsandprogramstoreplicateandscaleeffectiveadvancedcareprograms.

" HHS/CMMI" States

Increasefundingfordemonstrationstoexaminestrategiestoimprovecoordinationofcareacrosstime,caresettings,anddiagnoses,andprovidefundingtoscalesuccessfulinnovationsnationally.

" HHS/CMMI

ProvideincentivesforMedicaidprogramstoincreaseestablishmentanduseofadvancedcareprograms.

" Congress" HHS/CMMI" States

Createtransitionpaymentstofacilitatedevelopmentandadoptionofadvancedcareprograms.

" Congress" HHS/CMS" NQF

Includeincentivesorrequirementsforproviderstoestablishordeliveradvancedcare

" Congress" HHS/CMS

27

programsthroughMedicarevalue-basedpaymentprograms.

" States

Enhancequalitymeasuredevelopment

Developandbuildconsensusaroundcomprehensivequalitymetrics(process,outcomesandpatient/familyexperience)toassessthequalityofcaredeliverythroughpublic-privaterelationships.


StakeholdersCreateanddevelopconsensusaroundmetricsforappropriateandtimelyreferraltohospiceinMedicare.


StakeholdersCreateanddevelopconsensusaroundstandardmetricsappropriateforpersonswithadvancedillness.

" Congress" HHS/CMS" NQF" Privatestakeholders" ProfessionalAssociations

Encouragepublicreportingofpalliative,endoflife,andadvancedcarequalitymeasuresthroughFederalhealthprograms.

" Congress" HHS/CMS" States" ProfessionalAssociations

Utilizeresearchandqualitymeasuredevelopmenttofacilitateinclusionofadvancedcareinnewpaymentmodels

Developrequirements,standards,andproceduresforaccreditationofhospital-andcommunity-basedpalliativecareprograms.

" HHS/CMS" Privatestakeholders

(NQF,JCAHO)

RevisecriteriaforhospiceeligibilityinMedicareandexamineaccesstohospiceforMedicaidbeneficiaries.

" Congress" HHS/CMS

Amendpaymentrulesfortelehealth. " Congress" HHS/CMS" States

PolicyObjective Solution AdvocacyActorsImproveaccesstocareplanningservices

MedicareandMedicaidshouldcovervoluntaryadvancecareplanningservices.


Increasereimbursementsforvoluntaryadvancecareplanning.

" Congress" HHS/CMS

Enhancepublicknowledgeofadvancecareplanningandtreatmentoptions

Developandpromotepublicknowledgeonthevalueofvoluntaryadvancecareplanning.

" Congress" HHS/CMS" Privatestakeholders" States

ReviseMedicare&YouHandbook. " Congress

28

" HHS/CMSDisseminatePSDAcompliancebestpractices. " HHS/CMS

" Privatestakeholders

Facilitatedocumentationofvariouscomponentsofcareplansandensureaccessibilityacrossprovidersandsettings

RequireorincentthecreationofinteroperableEHRsthatfacilitateadvancecareplanningacrosssitesofcare,providers,andthroughthecourseofanillness.

" Congress" HHS/ONC

Increaseportabilityofadvancedirectives,POLSTformsforthosethatareseriouslyill,livingwills,anddurablepowersofattorney(DPAs)acrosshealthsystemsandfromstatetostate.

" Congress" HHS/ONC" States

Identifybestpracticesinadvanceandurgentcareplanning.

" States" PrivateStakeholders

EnhanceassessmentsoncaregiverneedsthroughFederalhealthprograms

RequireMedicaidHCBSWaiverprogramstocollectdataoncaregiverneeds.


UseMedicareannualvisitstoassesscaregiverneeds.

" Congress" HHS/CMS

Createanddisseminateinformationalresourcesaimedatcaregivers

Provideafullrangeofinformationalresourcestodirectcaregiverstoavailablesupports.

" Congress" HHS" Stakeholders

Promoteprovisionofperson-centeredcarethatmeetscontinuumofneeds

Assesscontinuumofneedsindividualsandcaregivershavetoprovideperson-centeredcare.

" Congress" HHS/CMS" PrivateStakeholders

PolicyObjective Solution AdvocacyActors

Enhanceprofessionaleducationandengagement

Establishcareerincentiveawardsviagrantsandcontractsforprovidersthatteachorpracticepalliativecareforaminimumnumberofyears.

" Congress

Increaseinterdisciplinarytrainingprogramsformedicalfellowsandresidents.

" Congress" Professional

Associations

Evaluateanddisseminatebestpracticesondevelopmentofinterdisciplinaryteamsinadvancedcare.

" Congress" HHS" PrivateStakeholders

Integratespecializedandinterdisciplinarytrainingprogramsintomedicalschoolcurriculums.

" PrivateStakeholders" Professional

Associations

29

Extendfinancialsupportforstatesandselectproviders

Establishfederalgrantprogramtodeveloppalliativecareandhospiceeducationprogramming.


Provideincentivestocertifydirectcareworkers.


Promoteongoingprofessionaleducationandengagement

Promotecontinuingeducationforphysicians,nurses,andotherhealthprofessionals.

" PrivateStakeholders" ProfessionalAssociations

Documents

The Coalition to Transform Advanced Care · Dying in America: Improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press