TheJohnA.HartfordFoundationChangeAGEntsInitiativeacceleratessustainedpracticechange
thatimprovesthecareofolderadults.ItdoesthisbyharnessingthecollectivepowerofTheJohnA.
HartfordFoundation’sinterprofessionalcommunityofscholars,clinicians,andhealthsystemleaders.
InDecember2015,nearly100JohnA.HartfordFoundationChangeAGEntsgatheredinPhiladelphia,
PAtoidentifychallengesandopportunitiesforimprovingcareofolderadultsinseveralcaresettings
andissueareas.EachgroupworkedtowardidentifyingactionableareasforJohnA.Hartford
FoundationChangeAGEnts,theFoundation,andcolleaguesinthefieldtopursue.Thebriefbelow
representsthesummaryoftheEndofLifeandSeriousIllnessgroup'sproceedingsandshouldinform
futureworktocreatewidespreadandsystemicchangesinthecareofolderadults.
EndofLifeandSeriousIllness
Approximately2.5millionAmericansdieeveryyearwith73percentovertheageof65.Thereisa
gapbetweenanindividual’sprioritiesandthemedicaltreatmenttheyreceive.Forexample,70
percentofAmericansprefertodieathome,but70percentdieinaninstitutionamongstrangers,
oftenreceivingburdensome,harmful,andunwantedmedicalinterventions.
Approachestoimprovecareoftheseriouslyillandattheendoflifeincludeeffortstostrengthen
palliativecareandadvancecareplanning.Advancecareplanningisavoluntarydiscussionabout
end‐of‐lifetreatmentpreferencesbetweenanindividualandtheircareprovider.Thisplanningis
vitalas75percentofpeopleareunabletomakesomeoralldecisionswhenthemostcritical
treatmentdecisionsneedtobemade.
Asrecentlyas2009,theideathatMedicarewouldpayforclinicianstohaveconversationswith
patientsabouttheirwishesforend‐of‐lifecarewasgreetedwiththehowlof“deathpanels.”The
issuebecametoxictopolicymakers.Butinthefallof2015,newMedicareproposalstopayfor
thesecriticalconversationswentthroughwithlittlecontroversy.BeginninginJanuary2016,
clinicianshavestartedtobepaid$80tohavehalf‐hourconversationswithMedicarebeneficiaries.
Ifeachoftheapproximately2.0millionpeopleonMedicarewhodieeachyearareserved,this
representsanannualinfluxof$160milliontowardimprovingcareofthosewithseriousillness.
TheEndofLife/SeriousIllnessissuegroupattheJohnA.HartfordFoundation’sChangeAGEnts
Conference—comprisedofclinicians,leadersandadvocates—metagainstthebackgroundofthis
hugepoliticalandculturalchange.Bigquestions,however,remain:Isthehealthcaresystem
ready?Areolderpeopleandfamiliesready?Canwekeepthepersonandhisorherneedsatthe
centerofthesecriticalconversationsandinteractions?
Challenges
Questionsandissuestoaddress.Severalkeythemes—andmorequestions—emergedfromthe
group’srichdiscussion,pointingbothtothedifficultiesandpossibilitiesthatthisdynamic
environmentsuggests.

Educationandtraining.Cliniciansneedtobepreparedforandmadecomfortablewith
theseadvancecareplanningconversations—notjustpaidorrequiredtohavethem.The
languageusedwithpatientsandfamiliesneedstobeclearandunderstandable.For
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example,howmanypeopleknowwhatanadvancedirectiveis?Ahealthcareproxy?
Shouldcliniciansandotherstalkabout“informedconsent”or“informedchoice?”Arewe
clearaboutthedifferencebetween“care”and“treatment”?(Wemayend“treatment,”but
shouldneverend“care.”)Thereismuchworktobedonetoclarifytheseandrelated
communicationissues,particularlyintraditionallyunderservedcommunitieswhomay
havedifferentattitudestowardend‐of‐lifecareandtalkingaboutdeath.

Checklistsvs.conversations.Arelatedtensionrevolvesaroundthevaluesandlimitsof
checklists.Doesachecklist‐stylerequirementtohaveanadvancedirective,forexample,
leadtoarichandmeaningfulconversationortoaperfunctoryandmeaningless(but
reimbursed)encounter?Howdowebestmeasurethequalityoftheseinteractionsto
ensurethebestpossibleconversationsforthosewithseriousillness?

Wheredowestart?Shouldweassumeorexpectthatitistheclinician’sjobtoinitiate
advancecareplanning?Ordowebelievethatpeoplecanhavetheseconversationsatthe
kitchentableandbringthesubjectintotheclinician’soffice?Thegrouprecognizedthat
workneedstobedonebothinsidethehealthcaresystemandoutsideinthecommunity.
Thoseinthegroupworkingforinstitutionalchangeinsidehealthcarenotedtheneedtobe
responsiveandconnectedtothelargercommunity.Thoseworkingtochangetheculture
outsidethehealthcaresystemwerealsoawareoftheneedtoinfluencethecultureandthe
supportsinsidehealthcare.Thereismuchroomhereforaholistic,outside‐insidestrategy.

Accessibility.Itisnotenoughifpeoplehaveconversationsandsignadvancedirectives.We
mustalsocreatearobustandsimplesystemtoretrievethosedirectivesfromelectronic
healthrecordsandotherplaceswhenthetimecomes.Otherwise,thedirectiveswillbe
“buriedtreasure,”uselesstothosewhoneedthem,whentheyneedthem.

Unfundedexpectations.Whilethenewregulationsandreimbursementarecertainly
positive,thoseworkinginthehealthcaresystem,forexample,notedthatthesepolicy
changescomewithoutthefundingforimplementationortheneededtrainingnotedabove.
Andinlow‐resourcedsettingsorclinics,cliniciansarealreadyoverwhelmedand
challengedtotakeon“onemorething.”
Opportunities
MovingForward.Lookingahead,anumberofhopefulideaswereraised:

Multipleconversations,multiplevenues.Theworkaheadrequiresastrategythatbrings
togetherinstitutionalandculturalchange,healthcareprovidersandpeople/patientsand
theirfamilies.Itshouldfollowthe“conversation”fromthekitchentabletotheclinician’s
officetotheelectronichealthcarerecord.Everyone—cliniciansandfamiliesalike—clearly
needstobuildtheircommunicationskillsandbecomecomfortablewiththeseinteractions.

Buildingthefield.Asthisworkisjustenteringaperiodofwhatweexpecttoberapid
growth,therewillbetheneedfor"more"—notablymoretime,resources,people,and
fundingforthiswork,aswellasmoresupportforinnovationsandinnovators.This
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includessupportforworkingbeyondwell‐resourcedhealthsystemsandensuringthat
advancecareplanningeffortsserveallcommunities.

Gettingeveryoneinvolved.Therewasrecognitionofthetensionbetweengettingadvance
directivesthatareusefulandclearforproviders,whilealsoincludingfamiliesandloved
onesintheprocessandensuringtheirneedsaremet.POLSTandothersuchformsare
fundamentallybetweenseriouslyillpatientsandclinicians.Weneedtohaveconversations
aroundthesedocumentsearlierandwithlovedonesorcaregivers,aswellaswith
seriouslyillpeoplethemselves.

Languagematters.Talkingabouttheseissuesrequiresustoframeendoflifeintheway
thatpeopleexperienceit.Onememberofthegroupendedwiththethoughtthatendoflife
should“bethedesserttoalifewelllived.”Anothersaidthegoalwasn’tsomucha“good
death”as“moregooddays.”Findingtherightlanguagewillbecriticaltohelpingallofus
havetheseneededconversations.
Thereismuchworktobedone,buttherearetremendousopportunitiesformakingneeded
changeinthisarea.Weareinthemiddleofahugetransition,with“onefootintwocanoes”asone
participantputit.Nomatterthecurrentuncertainty,weshouldexpectsignificantimprovements
inseriousillnessandend‐of‐lifecareinthemonthsandyearsahead.
EndofLifeandSeriousIllnessIssueGroupParticipants
EllenGoodman(SeniorResondent)
Founder,TheConversationProject
AmyBerman,RN(Facilitator)
TheJohnA.HartfordFoundation
ElliottWalker(Notetaker)
SCP
BrynnBowman
CentertoAdvancePalliativeCare
MauraBrennan,MD
BaystateMedicalCenter
WandaColon‐Cartagena,MDMPH
BaystateHealth‐BaystateMedicalCenter
AngelaGhesquiere,PhD,MSW
BrookdaleCenterforHealthyAgingofHunterCollege,
CityUniversityofNewYork
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MaureenHenry,JD,PhD
NationalCommitteeforQualityAssurance(NCQA)
MegJones‐Monteiro,MPH
CentertoAdvancePalliativeCare
LaurelKilpatrick,MD
BaylorScott&WhiteHealth
MollyMettler,MSW
MissionHealthwise
FrancesNedjat‐Haiem,PhD,MSW,LCSW
NewMexicoStateUniversity
JanetVanCleave,PhD,RN
NewYorkUniversityCollegeofNursing
AmyVandenbroucke,JD
NationalPOLSTParadigm
AmyWestcott,MD
PennStateCollegeofMedicine
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