American Heart Association
Larry A. Allen, Lynne W. Stevenson, Kathleen L. Grady, Nathan E. Goldstein, DanielD. Matlock, Robert M. Arnold, Nancy R. Cook, G. Michael Felker, Gary S. Francis, Paul J. Hauptman, Edward P. Havranek, Harlan M. Krumholz, Donna Mancini,
Barbara Riegel and John A. Spertus
Circulation published online March 5, 2012
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DecisionMakinginAdvancedHeartFailure
AScientificStatementFromtheAmericanHeartAssociation
EndorsedbyHeartFailureSocietyofAmericaandAmericanAssociation
ofHeartFailureNurses
LarryA.Allen,MD,MHS,Co-Chair;LynneW.Stevenson,MD,Co-Chair;KathleenL.Grady,PhD,APN,FAHA,Co-Chair;NathanE.Goldstein,MD;DanielD.Matlock,MD,MPH;RobertM.Arnold,MD;NancyR.Cook,ScD;G.MichaelFelker,MD,MHS;GaryS.Francis,MD,FAHA;PaulJ.Hauptman,MD;EdwardP.Havranek,MD;HarlanM.Krumholz,MD,SM,FAHA;DonnaMancini,MD;
BarbaraRiegel,DNSc,RN,FAHA;JohnA.Spertus,MD,MPH,FAHA;onbehalfoftheAmericanHeartAssociationCouncilonQualityofCareandOutcomesResearch,CouncilonCardiovascularNursing,CouncilonClinicalCardiology,CouncilonCardiovascularRadiologyandIntervention,and
CouncilonCardiovascularSurgeryandAnesthesia
hareddecisionmakingforadvancedheartfailurehasbecomebothmorechallengingandmorecrucialasdurationofdiseaseandtreatmentoptionshaveincreased.High-qualitydecisionsarechosenfrommedicallyreasonableoptionsandarealignedwithvalues,goals,andpreferencesofaninformedpatient.Thetop10thingstoknowaboutdecisionmakinginadvancedheartfailurecarearelistedinTable1.
S
WhySharedDecisionMaking?
Providershaveanethicalandlegalmandatetoinvolvepatientsinmedicaldecisions.Shareddecisionmakingrecog-nizesthattherearecomplextrade-offsinthechoiceofmedicalcare.1Shareddecisionmakingalsoaddressestheethicalneedtofullyinformpatientsabouttherisksandbenefitsoftreatments.2Inthesettingofmultiplereasonableoptionsformedicalcare,shareddecisionmakinginvolvescliniciansworkingwithpatientstoensurethatpatients’values,goals,andpreferencesguideinformeddecisionsthatarerightforeachindividualpatient.
Groundedintheethicalprincipleofautonomy,3judicialdecisions(eg,CruzanvMissouriDepartmentofHealth4)andlegislativeactions(eg,thePatientSelf-DeterminationAct5)haverepeatedlyaffirmedtherightsofpatientsordulyappointedsurrogatestochoosetheirmedicaltherapyfromamongreasonableoptions.6Theformalprocessofinformedconsentbeforeproceduralinterventionsisanembodimentofthisconceptinthatitunderscorestheclinician’sobligationtoensurethatthepatienthastheopportunitytobeinformed.3Aninformedpatientisonewhoisawareofthediagnosisandprognosis,thenatureoftheproposedintervention,therisksandbenefitsofthatintervention,andallreasonablealternativesandtheirassociatedrisksandbenefits.7Amajorpurposeofahigh-functioninghealthcaresystemistoprovidetheresourceswithwhichanactivated,informedpatientcanengageinprod-uctivediscussionswithaproactive,preparedhealthcareteam.8Shareddecisionmakingmovesbeyondinformedconsent.Itasksthatcliniciansandpatientsshareinformationwitheachotherandworktowardpatient-centereddecisionsabout
TheAmericanHeartAssociationmakeseveryefforttoavoidanyactualorpotentialconflictsofinterestthatmayariseasaresultofanoutsiderelationshiporapersonal,professional,orbusinessinterestofamemberofthewritingpanel.Specifically,allmembersofthewritinggrouparerequiredtocompleteandsubmitaDisclosureQuestionnaireshowingallsuchrelationshipsthatmightbeperceivedasrealorpotentialconflictsofinterest.ThisstatementwasapprovedbytheAmericanHeartAssociationScienceAdvisoryandCoordinatingCommitteeonJanuary27,2012.Acopyofthedocumentisavailableathttp://my.americanheart.org/statementsbyselectingeitherthe“ByTopic”linkorthe“ByPublicationDate”link.Topurchaseadditionalreprints,call843-216-2533ore-mailkelle.ramsay@wolterskluwer.com.
TheAmericanHeartAssociationrequeststhatthisdocumentbecitedasfollows:AllenLA,StevensonLW,GradyKL,GoldsteinNE,MatlockDD,ArnoldRM,CookNR,FelkerGM,FrancisGS,HauptmanPJ,HavranekEP,KrumholzHM,ManciniD,RiegelB,SpertusJA;onbehalfoftheAmericanHeartAssociationCouncilonQualityofCareandOutcomesResearch,CouncilonCardiovascularNursing,CouncilonClinicalCardiology,CouncilonCardiovascularRadiologyandIntervention,andCouncilonCardiovascularSurgeryandAnesthesia.Decisionmakinginadvancedheartfailure:ascientificstatementfromtheAmericanHeartAssociation.Circulation.2012;125:●●●–●●●.
Theonline-onlyDataSupplementisavailablewiththisarticleathttp://circ.ahajournals.org/lookup/suppl/doi:10.1161/CIR.0b013e31824f2173/-/DC1.
ExpertpeerreviewofAHAScientificStatementsisconductedbytheAHAOfficeofScienceOperations.FormoreonAHAstatementsandguidelinesdevelopment,visithttp://my.americanheart.org/statementsandselectthe“PoliciesandDevelopment”link.
Permissions:Multiplecopies,modification,alteration,enhancement,and/ordistributionofthisdocumentarenotpermittedwithouttheexpresspermissionoftheAmericanHeartAssociation.Instructionsforobtainingpermissionarelocatedathttp://www.heart.org/HEARTORG/General/Copyright-Permission-Guidelines_UCM_300404_Article.jsp.Alinktothe“CopyrightPermissionsRequestForm”appearsontherightsideofthepage.(Circulation.2012;125:00-00.)
©2012AmericanHeartAssociation,Inc.Circulationisavailableathttp://circ.ahajournals.org
DOI:10.1161/CIR.0b013e31824f2173
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2CirculationApril17,2012
Table2.EuropeanSocietyofCardiologyCriteriaforAdvancedChronicHeartFailure
1.Moderatetoseveresymptomsofdyspneaand/orfatigueatrestorwithminimalexertion(NYHAfunctionalclassIIIorIV)
2.Episodesoffluidretentionand/orreducedcardiacoutput
3.Objectiveevidenceofseverecardiacdysfunctiondemonstratedbyatleast1ofthefollowing:
LeftventricularejectionfractionϽ30%
PseudonormalorrestrictivemitralinflowpatternbyDopplerHighleftand/orrightventricularfillingpressures,orElevatedB-typenatriureticpeptide
4.Severeimpairmentoffunctionalcapacityasdemonstratedbyeitherinabilitytoexercise,6-minwalkdistanceϽ300m,orpeakoxygenuptakeϽ12to14mL⅐gϪ1⅐minϪ15.Historyofatleast1hospitalizationinthepast6mo
6.CharacteristicsshouldbepresentdespiteoptimalmedicaltherapyNYHAindicatesNewYorkHeartAssociation.
ReprintedfromMetraetal,20withpermissionofthepublisher.Copyright©2007,OxfordUniversityPress.
Table1.TopTenThingstoKnow
1.Shareddecisionmakingistheprocessthroughwhichcliniciansandpatientsshareinformationwitheachotherandworktowarddecisionsabouttreatmentchosenfrommedicallyreasonableoptionsthatarealignedwiththepatients’values,goals,andpreferences.
2.Forpatientswithadvancedheartfailure,shareddecisionmakinghasbecomebothmorechallengingandmorecrucialasdurationofdiseaseandtreatmentoptionshaveincreased.
3.Difficultdiscussionsnowwillsimplifydifficultdecisionsinthefuture.4.Ideally,shareddecisionmakingisaniterativeprocessthatevolvesovertimeasapatient’sdiseaseandqualityoflifechange.
5.Attentiontotheclinicaltrajectoryisrequiredtocalibrateexpectationsandguidetimelydecisions,butprognosticuncertaintyisinevitableandshouldbeincludedindiscussionswithpatientsandcaregivers.
6.Anannualheartfailurereviewwithpatientsshouldincludediscussionofcurrentandpotentialtherapiesforbothanticipatedandunanticipatedevents.
7.Discussionsshouldincludeoutcomesbeyondsurvival,includingmajoradverseevents,symptomburden,functionallimitations,lossofindependence,qualityoflife,andobligationsforcaregivers.
8.Astheendoflifeisanticipated,cliniciansshouldtakeresponsibilityforinitiatingthedevelopmentofacomprehensiveplanforend-of-lifecareconsistentwithpatientvalues,preferences,andgoals.
9.Assessingandintegratingemotionalreadinessofthepatientandfamilyisvitaltoeffectivecommunication.
10.Changesinorganizationalandreimbursementstructuresareessential
topromotehigh-qualitydecisionmakinganddeliveryofpatient-centeredhealthcare.
treatment.9Shareddecisionmakingincorporatestheperspec-tiveofthepatient,whoisresponsibleforarticulatinggoals,values,andpreferencesastheyrelatetohisorherhealthcare.Shareddecisionmakingincorporatestheperspectiveoftheclinician,whoisresponsiblefornarrowingthediagnosticandtreatmentoptionstothosethataremedicallyreasonable.Shareddecisionmakingismosteasilyappliedtopreference-sensitivedecisions,inwhichbothcliniciansandpatientsagreethatequipoiseexists,anddecisionsupporthelpspatientsthinkthrough,forecast,anddeliberatetheiroptions.However,insituationsinwhichcliniciansholdtheviewthatscientificevidenceforbenefitstronglyoutweighsharm,behavioralsup-port(eg,smokingcessationcounseling)designedtodescribe,justify,andrecommendspecificbehaviormayalsobeappropri-ateandcomplementarytodecisionsupport.10Finally,certaintherapeuticoptionsmaybeconsideredunreasonableandthere-foreindependentofpatientdemands,althoughsituationsofmedicalfutilityarerelativelyrare.6Althoughnotallpatientswillbeabletoclearlyarticulatedecisionsthatarecongruentwiththeirstatedgoals,shareddecisionmakingaimstoensurethatpatients’values,goals,andpreferencesareexploredandincor-poratedintothemedicaldecision-makingprocess.
Patient-centeredmedicinehasbeensuggestedasthenextphaseinhealthcare.11Shareddecisionmakingputsintopracticetheprincipleof“patient-centeredcare,”whichtheInstituteofMedicinehasidentifiedas1ofthe6pillarsofquality,12withpatient-centeredcaredefinedas“providingcarethatisrespectfulofandresponsivetoindividualpatientpreferences,needs,andvaluesandensuringthatpatientvaluesguideallclinicaldeci-sions.”12ThePatientProtectionandAffordableCareActde-votes4pagestopatient-centeredcare,specificallycallingforthe
developmentofdecisionaids,shareddecision-makingpro-grams,andmetricsforthequalityofdecisionmaking.13Itwillbeassumedthroughoutthisdocumentthatdiscussionsanddecisionmakingwithpatientsalsoinclude,whenappropri-ate,thefamilyandotherindividualsinvolved,suchascaregiversandcompanions.TheapproachtodecisionmakingoutlinedinthisScientificStatementtakestheperspectiveoftheindividualpatientratherthanthatofsocietyingeneral.Althoughindividualmedicaldecisionstakencollectivelyhaveimplicationsfordis-tributivejusticeandresourceallocation,itisnottheresponsibil-ityofclinicians,patients,orfamiliestodirectlyfactortheseglobalconsiderationsintoindividualdecisions.14Rather,discus-sionsregardingalternativetreatmentoptions,includingnotreat-ment,shouldbefocusedonmeetingaspecificindividual’svalues,goals,andpreferenceswithinthecontextofsocietalrulesandregulations.
WhyAdvancedHeartFailure?
Heartfailureaffects2.4%oftheadultpopulationandover11%oftheexpandingpopulationϾ80yearsold.15EstimatedtotalheartfailurecostsintheUnitedStatesareprojectedtoreach44.6billionby2015.15Existingtherapiesslow,butinfrequentlyreverse,diseaseprogression.Asaresult,theprevalenceofsymptomaticheartfailurehasincreased,in-cludingaprolongationoftheadvancedphaseofthedisease.16TheAmericanHeartAssociationcharacterizesthefarendoftheheartfailurecontinuumasstageD,or“refractoryend-stageheartfailure,”17furtherdefinedbyothers,18,19includingtheEuropeanSocietyofCardiology(Table2).20Theseoverlappingdefinitionsdescribeagroupofpatientsforwhomsymptomslimitdailylifedespiteusualrecommendedthera-piesandforwhomlastingremissionintolesssymptomaticdiseaseisunlikely.Theincreasingprevalence,highsymptomburden,andpossibledisease-exchangingtherapies(ie,trans-plantationandmechanicalcirculatorysupport)forpatientslivingwithadvancedheartfailuremandateasystematicandthoughtfulapproachtodecisionmaking.
ThisScientificStatementreviewstheclinicalcontextfordecisionmakinginadvancedheartfailureandprovides
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AllenetalDecisionMakinginAdvancedHeartFailure3
Figure1.Adepictionoftheclinicalcourseofheartfailurewithassociatedtypesandintensitiesofavailabletherapies.Blackline:
Patientstendtofollowaprogressive,albeitnonlinear,declineinhealth-relatedqualityoflifeasthediseaseprogresses;thiscoursecanbeinterruptedbysuddencardiacdeathcausedbyarrhythmiaorcanendinamoregradualdeathcausedbyprogressivepumpfailure.Grayline:Atdiseaseonset,multipleoraltherapiesareprescribedforcardiacdysfunctionand/ortreatmentofcomorbidities.Asdiseaseseverityincreases,theintensityofcaremayincreaseinparallel,withintensificationofdiuretics,additionofanimplantablecardioverter-defibrillator/cardiacresynchronizationtherapyforthoseeligible,andincreasinginteractionwiththemedicalsystemthroughambulatoryvisitsandhospitalizations,untilthetimewhenstandardtherapiesbegintofail(transitiontoadvancedheartfailure).Dottedline:Pallia-tivetherapiestocontrolsymptoms,addressqualityoflife,andenhancecommunicationarerelevantthroughoutthecourseofheartfail-ure,notjustinadvanceddisease;palliativetherapiesworkhandinhandwithtraditionaltherapiesdesignedtoprolongsurvival.Thecriticaltransitionintoadvancedheartfailurefromthemedicalperspectiveisoftenfollowedbyatransitioningoalsofcarefromthepatientandfamilyperspective,whereinpalliativetherapiesmaybecomethedominanttreatmentparadigm(forthemajorityofpatientsinwhomtransplantationandmechanicalcirculatorysupportarenotanoption).Cliniciansmustrecognizethetransitiontoadvancedheartfailuresothattherapeuticoptionscanbeconsideredinatimelyfashionandpatientsareabletoproactivelymatchmedicaldeci-sionstoclinicalrealities.CHFindicateschronicheartfailure;MCS,mechanicalcirculatorysupport.ModifiedfromLankenetal;21reprintedwithpermissionoftheAmericanThoracicSociety.Copyright©2012,AmericanThoracicSociety.
guidanceoncommunicationtechniquestosupportthesedecisions.Itsgoalisprimarilytohelphealthcareprovidersofalltypesintegratetheseconceptsintotheirroutinepracticetopromotethedeliveryofeffective,safe,efficient,timely,equitable,andpatient-centeredcare.12Werecognizethatmajorbarrierstotheimplementationoftheseconceptsaretime,training,andresources.Wealsorecognizethelimitedandinequitableaccesstoexpertswithformaltraininginheartfailureandpalliativecare,whichleavesmanyoftheseresponsibilitiestobebornebyhealthcareprovidersinageneralmedicalsetting.Ifthegoalsofthisdocumentaretoberealized,however,thehealthcaresystemwillneedtomakeafundamentalcommitmenttoshareddecisionmaking,withrealignmentofincentivestosupportthetailoringofadvancedcaretoindividualpatients.Withoutchangesinthestructureofthehealthcareteamandassociatedreimbursement,theserecommendationswillremainanunfundedmandatethatareunlikelytobefullyrealizedinmostpracticesettings.
●
Uncertaintyisinevitableandshouldbeincludedindiscus-sionswithpatientsandfamily.
EstimatingPrognosisinHeartFailure
Assessmentofprognosisisthefoundationforselectionamongtherapiesforlife-threateningdisease,butthisisparticularlychallengingforheartfailure.Theclinicalcoursevariesdramaticallyacrossthespectrumofdiseaseseverityandisrelativelyunpredictableforindividualpatients(Figure1).19,21Thiscontrastswiththemorelineardeclineofpatientswithadvancedcancer,whichhastraditionallybeenthemodelforapproachestoend-stagedisease.Evenlateinheartfailure,patientsoftenenjoy“gooddays”andbriefinterludesofapparentstability,whichcanlullthemandtheircareprovid-ersintopostponingvitaldecisions.Prognosisisfurthercloudedbytheuniquecontrastbetweenunexpectedsuddendeath(ie,lethalarrhythmia)andlingeringdeathwithconges-tivesymptoms(ie,progressivepumpfailure).Frequentreap-praisaloftheclinicaltrajectoryhelpscalibrateexpectations,guidecommunication,andinformrationaldecisions.
Morethan100variableshavebeenassociatedwithmor-talityandrehospitalizationinheartfailure.22–27Examplesofprognosticfactorsincludedemographics(age,sex,race,insurancestatus),functionalstatus(NewYorkHeartAssoci-ationfunctionalclassandhealth-relatedquality-of-lifescores),exercisecapacity(peakoxygenconsumption,6-minutewalk),cardiacstructureandfunction(cardiaccham-
ExpectationsfortheFuture
●●
●
Attentiontotheclinicaltrajectoryisrequiredtocalibrateexpectationsandguidetimelydecisions.
Predictivemodelscantargethigh-riskpopulationsbutleavewideuncertaintiesaroundestimatesofsurvivalforanindividual.
Difficultdiscussionsnowwillsimplifydifficultdecisionsinthefuture.
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4CirculationApril17,2012
Table3.SelectedPrognosticModelsinHeartFailure
KeyCovariates
Outcome
All-causemortality
All-causemortality,urgenttransplantation,orLVADimplantation
Ambulatory
HeartFailureSurvivalScore23SeattleHeartFailureModel22(depts.washington.edu/shfm)22aHospitalized
EVERESTRiskModel22˙O2,LVEF,serumsodium,meanBP,HR,ischemicetiology,QRSPeakV
duration/morphology
NYHAfunctionclass,ischemicetiology,diureticdose,LVEF,SBP,sodium,hemoglobin,percentlymphocytes,uricacid,andcholesterol
Age,diabetes,h/ostroke,h/oarrhythmia,-blockeruse,BUN,sodium,BNP,KCCQscores
Age,SBP,respiratoryrate,sodium,hemoglobin,BUN,h/oCVA,h/odementia,h/oCOPD,h/ocirrhosis,h/ocancer
BUN,SBP,serumcreatinine
BNP,cardiopulmonaryresuscitationormechanicalventilationduring
hospitalization,BUN,sodium,ageϾ70y,dailyloopdiureticdose,lackof-blocker,6-minwalkdistance
EFFECT29ADHERE28ESCAPEDischargeScore31Thecombinedendpointofmortalityorpersistentlypoorqualityoflife(KCCQϽ45)overthe6moafterdischarge30-dand1-ymortalityIn-hospitalmortality6-momortality
˙O2indicatesoxygenconsumption;LVEF,leftventricularejectionfraction;BP,bloodpressure;HR,heartrate;NYHA,NewYorkHeartAssociation;SBP,systolicBP;V
LVAD,leftventricularassistdevice;EVEREST,EfficacyofVasopressinAntagonisminHeartFailureOutcomeStudywithTolvaptan;h/o,medicalhistoryof;BUN,bloodureanitrogen;BNP,B-typenatriureticpeptide;KCCQ,KansasCityCardiomyopathyQuestionnaire;EFFECT,EnhancedFeedbackforEffectiveCardiacTreatment;CVA,cerebrovascularaccident;COPD,chronicobstructivepulmonarydisease;ADHERE,RegistryforAcuteDecompensatedHeartFailurePatients;andESCAPE,EvaluationStudyofCongestiveHeartFailureandPulmonaryArteryCatheterizationEffectiveness.
bersize,ejectionfraction),assessmentsoffillingpressures,biomarkers(natriureticpeptides,inflammatorymarkers),re-nalandliverdysfunction,comorbidities(diabetes,lungdis-ease),clinicalevents(defibrillatorshocksandrecenthospi-talizations),psychosocialfactors(depression,socialisolation),andbehavioralfactors(eg,adherencetothemed-icalregimen).
Avarietyofmultivariablemodelshavebeenpublishedinanefforttoprovidemorerefinedpredictionsofprognosisinpatientswithheartfailure(Table3).ThemostcommonlyusedmultivariableinstrumentsforestimatingprognosisinsymptomaticoutpatientsaretheHeartFailureSurvivalScore23andtheSeattleHeartFailureModel.22Inpatientshospitalizedforheartfailure,avarietyofinpatientmodelshavebeendevelopedtopredictbothin-hospital28andpost-dischargeoutcomes.26,27,29–31Theseinpatientmodelshavehighlightedthestrengthofnatriureticpeptides,renalfunc-tion,andlowbloodpressureaspredictorsofsurvivalinpatientsinthissetting.24Recently,thefirstmodeltopredictbothmortalityandquality-of-lifeoutcomesafterdischargehasbeenpublished.32Althoughallofthesemodelsrequirecomplexmathematicalformulastogeneraterisks,theincreas-inguseofhealthinformationtechnologyinthedeliveryofcareoffersthepotentialtoautomaticallygenerateriskpro-filesfromtheelectronicmedicalrecord.
Theapplicationofcommonlyusedambulatoryheartfail-uremodelstotheadvancedheartfailurepopulationcanresultinmiscalibratedestimatesoflifeexpectancy,withsignificantunderestimationofriskincertainpopulations.33,34Therefore,beforerecommendinggeneraluseofriskmodels,adequatediscrimination(ie,theabilityofamodeltoaccuratelydistinguishbetweenapatientwhowillexperiencetheeventversusonewhowillnot)35,36andcalibration(ie,theabilityofthemodeltoaccuratelypredicttheobservedprobabilityofaneventacrosslevelsofrisk)37willneedtobevalidatedforbroaderpopulationsthanthosefromclinicaltrials.33,34PrognosisforBothQuantityandQualityofLife
Mostprognosticmodelsinheartfailurefocusonmortality,whichiseasilydeterminedandhighlyrelevant;however,otherclinicaloutcomesalsorankhighinimportancetoindividualpatients(Figure2).Multiplestudieshavedocu-mentedpatients’willingnesstosacrificesurvivalinexchangeforsymptomrelief,atrade-offthatvariesbetweenpatientsandwithinthesamepatientovertimeandiscorrelatedlooselywithdiseaseseverity39,40butstronglywithdo-not-resuscitatestatus.41Afulldiscussionofprognosisthereforeincludesnotonlytherisksofdeathbutalsothepotentialburdensofworseningsymptoms,limitedfunctionalcapacity,lossofindependence,reducedsocialfunctioning,decreasedqualityoflife,andincreasedcaregivercommitment.42Unfor-tunately,muchlessisknownabouttherisksoftheselatteroutcomes.Theonlyexistingmodelthatestimatestheriskofunfavorablefuturequalityoflifeshowsimportantdifferencesfromriskmodelsfordeath,particularlytherelativeimpor-
Figure2.Prognosisisnotonlyaboutexpectationsforsurvival.Therearemultipledomainsthatareofvaryingimportancetoindividualpatients.AdaptedfromSpilker.38Downloaded from http://circ.ahajournals.org/ by guest on March 12, 2012
Allenetal
tanceofcurrentmeasuresofqualityoflife.32Moreastuteanticipationofanunfavorablequalityoflifeuntildeath,inadditiontoanticipationofdeath,wouldbetteridentifypa-tientsforwhomdetaileddiscussionsofprognosisandoptionsareappropriate.Inchoosingamongoptions,thisinformationgapregardingnonmortalitypatient-centeredoutcomesisexacerbatedbythelackofrigorincollectinghealthstatusinformationinmajortrials,althoughthisisimproving.Evenlessisknownabouttherelativeimpactofthediseaseandtherapiesoncaregiverburdenandqualityoflifeforfamilymembers.43–46DecisionMakinginAdvancedHeartFailure5
UncertaintyfortheIndividual
Evenundertheseidealizedcircumstances,mostmodelsdesignedtopredictmortalityhaveonlymodestaccuracy.47Furthercomplicatingpracticaluse,predictionmodelsrepre-senttheaveragesurvivalforapopulationofpatientswithcharacteristicssimilartothoseoftheindividualpatient.A70%chanceof2-yearsurvivaldoesnotdirectlytranslatetoanindividualwhowillinsteadbe100%aliveordeadatanypointintime.Forpatientswithadvanceddisease,interestoftenfocusesinsteadontheexpectedlengthoftimeremain-ing;patientsaskthequestion,“HowlongdoIhave?”Thispointpredictionofsurvivaltime48isevenmoredifficulttoestimate.49,50Evenifamodelfitswellforacohortandtheestimatedsurvivalcurveprovidesagoodfittothedata,itisnotclearwherealongthecurveanindividualpatientwilllie.Asanexampleofthedifficultyinestimatingsurvivalduration,onecanconsiderthemediansurvivalestimate(50%survivalattimex)asanestimationofthetimeinwhichhalfofthepatientswilllivelongerandhalfwillliveforashortertime.Parkes51definesan“error”insurvivalasanestimatemorethantwiceaslongastheactualsurvivalorlessthanhalftheactualsurvival.Thatis,ifapatientsurvivedfor12months,apredictedsurvivalofϾ2yearsorϽ6monthswouldbeconsideredanerrorbythisdefinition.Thiserrordependsonthevariabilityinsurvivaltimesforpatients,morespecificallyonthestandarddeviationofthelogarithmofsurvivaltime.Usingseveralstatisticalmodelsofsurvival,theprobabilityofgreaterthan2-folderrorremainsnear50%underrealisticassumptions.49Ultimately,thestochasticnatureofheartfailureconveysahighlevelofprognosticuncertaintyformostpatients.Futureeventshaveacertaindegreeofunpredictability,suchthatimprovedunderstandingofrisktendstoaddincrementallylessprognosticinformationtoexistingmodels.Evenaperfectmodelthatincludesallpossiblemeasurementsdescribesonlywhathasalreadyhappened.Thetrajectorycanoftenbesteepenedbynewconditionsorlifeevents,suchasmyocar-dialinfarction,aseriousfall,orthedeathofaspouse.Itisvitaltoacknowledgeuncertaintyindiscussionsaboutfuturecare.
patientsdischargedfromthehospitalwithadvanced-stageheartfailure,bothphysicians’andnurses’survivalestimateshadmodestabilitytodiscriminatethosewhosubsequentlydiedfromthosewholived(withnursesoutperformingphy-sicians),butabsoluteestimatesweresignificantlymiscali-brated,againoverestimatingsurvival.54Inpatientswithchronicheartfailure,thepatient-predictedsurvivalalsotendedtooverestimatesurvivalversusmodel-basedpredic-tions,particularlyforyoungerpatients.55Cliniciansneedtolearnhowtoleverageobjectiveriskmodels,whilerecogniz-ingtheirlimitationsandadaptingthemonthebasisoftheiruniqueclinicalandpsychosocialfeaturesandserialassess-mentsnotgenerallyincorporatedintosuchmodels.
Anticipation,Timing,andReview
●
●
●
Anannualheartfailurereviewwithpatientsshouldincludediscussionofcurrentandpotentialtherapiesforbothanticipatedandunanticipatedevents.
Onthedayofhospitaladmission,itisfarbettertoreviewratherthanintroduceadvancedcaredecisions,whichre-quiresthatpatientpreferenceshavebeendiscussedprevi-ouslyanddocumentedintheambulatorysetting.
Clinicalmilestonessuchasimplantablecardioverter-defibrillator(ICD)shocksorrecurrenthospitalizationshouldtriggerinterimreviewanddiscussionoftreatmentoptionsandpreferences.
TimingofDiscussions
Findingappropriatetimetodiscusspreferences,prognosis,andmedicaloptionsisaformidablechallenge.Suchdiscus-sionsrequireamajorcommitmentoftime,focus,andemotionalenergy,whichisnotinsynchronywiththefreneticpaceandfrequentinterruptionsofclinicalpractice.Currentorganizationalandreimbursementstructuresprovidestrongdisincentivetosuchintenseencounters.
Asaresult,formaldiscussionsaboutprognosisanddeci-sionmakingareoftendeferreduntilmoreemergentandlessfavorableoccasions,whenthoughtfuldecisionmakingmaybeimpaired.Forinstance,atthetimeofpresentationforhospitaladmissionwithdecompensatedheartfailure,patientsarefrequentlyuncomfortableandoftenrequireurgent,inten-siveevaluationandmanagement.Cliniciansresponsiblefordeliveringcareinthissettingaretypicallyunfamiliarwiththepatientandoveralldiseasetrajectory.Hastyquestionssuchas,“Doyouwantustodoeverything?”and“Wouldyouwanttobekeptaliveasavegetable?”canyieldinaccurateandconflictinganswers.Ithasbeenshownthatpatientsdecidingresuscitationpreferencesduringanacutehospitalizationfre-quentlyreversetheirdecisionsoverthenextfewmonths.56Therefore,optimalshareddecisionmakingrequiresthatpatientpreferenceshavebeendiscussedpreviouslyanddoc-umentedintheambulatorysetting.Thedayofhospitaladmissionisatimetoreviewandpossiblyupdate,ratherthanintroduce,advancedcaredecisions.Ontheotherhand,oncetheclinicalcoursehasbecomeapparentduringhospitaliza-tion,clinicianscantakeadvantageofthesubstantialtimetheyhavewiththepatientandfamilytofurtheraddresscomplexmedicaldecisionsbeforedischarge.Whentheexpectedsurvivalorqualityoflifeisverylimited,hospitalizationmay
NeedforAccurateEstimatesofRisk
Despitelimitationsofprognosticmodels,theyaregenerallymoreaccuratethanclinicalintuition,whichispronetobias.Areviewofsurvivalpredictionsamongterminallyillcancerpatients52foundthatphysiciansconsistentlyoverestimatedsurvival,whichhasbeenseeninotherstudies.51,53For
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Table5.SelectedComponentsThatMayBeIncludedinanAnnualHeartFailureReview
Characterizationofclinicalstatus
Functionalability,symptomburden,mentalstatus,qualityoflife,anddiseasetrajectory
Perceptionsfromcaregiver
Solicitationofpatientvalues,goals,andgeneralcarepreferencesEstimationofprognosis
ConsiderincorporatingobjectivemodelingdataOrienttowiderangeofuncertaintyReviewoftherapies
Indicatedheartfailuretherapiesinappropriatepatients(BB,ACEI/ARB,AA,CRT,ICD)
Treatmentofcomorbidities(AF,HTN,DM,CKD,etc)
Appropriatepreventivecare,withinthecontextofsymptomaticheartfailure
Planningforfutureevents/advancecareplanningResuscitationpreferences
Desireforadvancedtherapies,majorsurgery,hospiceStandardizeddocumentationoftheannualreviewinthemedicalrecordBBindicates-blocker;ACEI,angiotensin-convertingenzymeinhibitor;ARB,angiotensinIIreceptorblocker;AA,aldosteroneantagonist;CRT,cardiacresynchronizationtherapy;ICD,implantablecardioverter-defibrillator;AF,atrialfibrillation;HTN,hypertension;DM,diabetesmellitus;andCKD,chronickidneydisease.
Table4.TriggersforFormallyAssessingPrognosisandHavingConversationsAboutGoalsofCareandVoluntaryAdvanceCarePlanning
Routine
“AnnualHeartFailureReview”withascheduledclinicvisitEvent-driven“milestones”thatshouldpromptreassessmentIncreasedsymptomburdenand/ordecreasedqualityoflifeSignificantdecreaseinfunctionalcapacityLossofADLsFalls
Transitioninlivingsituation(independenttoassistedorLTC)Worseningheartfailurepromptinghospitalization,particularlyifrecurrent57Serialincreasesofmaintenancediureticdose
Symptomatichypotension,azotemia,orrefractoryfluidretentionnecessitatingneurohormonalmedicationunderdosingorwithdrawal58Circulatory-renallimitationstoACEI/ARB
Decreaseordiscontinuationof-blockersbecauseofhypotensionFirstorrecurrentICDshockforVT/VF59InitiationofintravenousinotropicsupportConsiderationofrenalreplacementtherapyOtherimportantcomorbidities:newcancer,etcMajor“lifeevents”:deathofaspouse
ADLindicatesactivitiesofdailyliving;LTC,long-termcare;ACEI,angioten-sin-convertingenzymeinhibitor;ARB,angiotensinIIreceptorblocker;ICD,implantablecardioverter-defibrillator;VT,ventriculartachycardia;andVF,ventricularfibrillation.
alsoaffordbetteraccesstomultidisciplinaryteams,palliativecare,andotherresourcesthancanbemarshaledintheoutpatientsetting.Alloftheseconsiderationsunderscoretheimportanceofaproactive,anticipatory,anditerativeap-proachtosolicitingpatients’preferences.Thisshouldoccurbothroutinelyandattheoccurrenceofmilestonesthatheraldaworseningprognosis(Table4).
AnnualHeartFailureReview
The“AnnualHeartFailureReview”isaconceptbasedontheannualwellnessvisitsthathavelongbeenasuccessfulpartofprimarycare.Thisreflectstheprincipleandpracticeof“anticipatoryguidance,”thepsychologicalpreparationofapersontohelprelievethefearandanxietyofaneventexpectedtobestressful.Whentriggeredbyascheduledanniversaryinthesamewayaswellbabyvisitsorperiodicmammography,anautomaticannualreviewcanopenabroaddialoguewithpatientsandfamilieswithouttheunvoicedconcernthatitsignifiesbadnews.Inheartfailure,thismaycoincide,forexample,withanannualinfluenzavaccinationorat1-yearincrementsroughlyoriginatingfromthedateofdiagnosis.Itmaybeconvenienttohavethisreviewoccurintemporalproximitytoanannualgeneralmedicalevaluation,particularlywithregardtoscreeningstudies,forwhichtheindicationsmightchangeinthesettingofprogressiveheartdisease.
Intheannualreviewvisit(Table5),avarietyoftaskscouldbeaccomplished.Patientscouldsummarizetheirrecentsymptomburdenandqualityoflife.Goalsforthecomingyearandpreferencesforoutcomesincludingsurvival,func-
tionalcapacity,andqualityoflifecouldbesolicited.Arangeofprognosiswouldbeestimatedandbroadlyconveyed.Currenttreatmentwithdrugsanddevicescouldbereviewedrelativetoindicatedtreatmentbasedonthepatient’sheartfailuretype,stage,andtrajectory.Similarly,evaluationandmanagementofnewrelevantcomorbiditiescouldbere-viewed,suchassleepapnea,anemia,anddepression.“Vol-untaryadvancecareplanning,”includingformaldesignationofahealthcareproxyanddo-not-resuscitatestatus,whichhasbeenproposedaspartoftheinitialMedicarevisitandsubsequent“wellnessvisits,”60(p73406)wouldbeessentialandwouldtakeplacenaturallywithinthecontextofanannualreview.
Thisscheduledreviewwouldrequireconsiderableface-to-facetimebetweenthepatient,family,andphysician.Theresultsofthisdiscussionshouldbedocumentedspecificallyinadesignatedareaofthechartavailabletoallwhomightbeinvolvedinthepatient’scurrentandfuturecare.
RespondingtoMilestones
Althoughheartfailureisachronicdisease,itsclinicalcourseoftenincludessuddenchanges.Thereareseveral“mile-stones”intheclinicalcourseofheartfailurethatcanrepresentan“inflectionpoint”intheoveralltrajectory(Fig-ure119,21),suchasfirstICDshock,rehospitalization,devel-opmentofcardiorenalsyndrome,withdrawalofangiotensin-convertingenzymeinhibitors,orintubation.Oncetheacuteconditionhasbeenaddressed,sucheventsshouldtriggerafocusedversionofthe“HeartFailureReview,”whichwouldincludereassessmentofprognosis,treatmentoptions,andpatientpreferences.
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Table6.
DecisionMakinginAdvancedHeartFailure7
FrameworkofMajorMedicalDecisionsinAdvancedHeartFailureFacedbyPatientsandTheirClinicians
GenerallyConsideredOnlyforHFWithReduced
LVEF
ExamplesofUncommonOutcomesThatCouldBe
AnticipatedWith“WhatIf”Discussionsin
High-RiskPatientsWorsenedcardiacfunction/inabilitytocomeoffbypassorIABP:PlaceMCS?
Ventilatordependence:Extubate?When?Stroke:Feedingtube?Institutionalcare?Coronaryocclusion:ReverttoCABG?
Unabletoplacecoronarysinuslead:Converttothoracotomy?
Terminalorpermanentlydisablingdisease:Devicedeactivation?
Unabletowean:ConverttopermanentMCSorwithdraw?
Unabletowean:Transitiontohomeinotropesordiscontinue?
Failureofacuteinjurytoresolve:Initiateindefinitehemodialysisordiscontinue?
Earlygraftfailureorotherseriouspostoperativecomplications:MCSorwithdrawsupport?Latergraftfailure:Retransplantation?
Stroke,infection,orrecurrentbleeding:Turnoffdevice?
Worseningheartfailurecausinghemodynamicand/orrespiratorycollapse:Continueventilatorysupportand/orinitiatecirculatorysupport?
TypesofOptions
Majorinterventionsthatmayimprovecardiacfunction
SpecificExamplesofInterventionsCABGValvesurgeryPericardialstripping
Percutaneousvalveintervention
PCICRT
ICD
Temporarysupportdevices(IABP,percutaneousVAD,ECMO)
IVinotropesRenalreplacementtherapy(dialysisor
ultrafiltration)Transplantation
XXXX
TherapiesthatonlyreducetheriskofsuddencardiacdeathAdjunctivetherapiesinstitutedduringacutedecompensationwithpotentialchronicdependence
Advancedsurgicaltherapiestoexchangedisease
X
PermanentMCS/LVAD
Noncardiacproceduresforcomorbidities
JointreplacementHerniarepair
ResectionofpulmonarynoduleAsymptomaticaorticaneurysmrepair
Screeningcolonoscopy
X
Notgenerallytobedone,becauserisksarethoughttooutweighpotential
benefit
HFindicatesheartfailure;LVEF,leftventricularejectionfraction;CABG,coronaryarterybypassgraftingsurgery;IABP,intra-aorticballoonpump;MCS,mechanicalcirculatorysupport;PCI,percutaneouscoronaryintervention;CRT,cardiacresynchronizationtherapy;ICD,implantablecardioverter-defibrillator;VAD,ventricularassistdevice;ECMO,extracorporealmembranousoxygenation;andIV,intravenous.
FrameworkofOptions
●●
●
●
●
●
●
Physiciansareresponsiblefordefiningtherangeofoptionsthataremedicallyappropriate.
Presentationofmajorinterventionsshouldalwaysincludespecificdescriptionofalternativeapproaches,includingcontinuationorwithdrawalofongoingtreatmentsandfocusonsymptomaticcare.
Discussionsshouldincludearangeofanticipatedout-comes,includingnotonlysurvivalbutalsomajoradverseevents,independence,functionalcapacity,andqualityoflifeforbothpatientandcaregiver,eveniftoacknowledgelackofthisinformationforsomeinterventions.
Therapiesthatmayleadtodependenceshouldbeweighedcarefullybeforeinitiationevenwhenanticipatedtobetemporary(eg,intravenousinotropes,renalreplacementtherapy,andintubation).
Benefitsandrisksofnoncardiacproceduresshouldbereviewedinthecontextofcompetingrisksfordeathandfunctionallimitationattributabletoheartfailure(eg,hipreplacement,repairofasymptomaticaorticaneurysm,orscreeningtests).
Decisionsformajorcardiacandnoncardiacinterventionsshouldincludeconsiderationof“whatif”situationsofunanticipatedadversity.
Referraltoapalliativecareteamshouldbeconsideredforassistancewithdifficultdecisionmaking,symptomman-agementinadvanceddisease,andcaregiversupportevenaspatientscontinuetoreceivedisease-modifyingtherapies.
Inthefaceoftheincreasingcomplexityofdiagnosticandtreatmentoptionsforheartfailure,aframeworkforclassify-ingvariousmedicaldecision-makingscenariosshouldhelpcliniciansbetteranticipatethosedecisionsmostlikelytooccurasthediseaseprogressestoanadvancedstage(Table6).Toofrequently,thedefaultassumptionisthatpatientswould“wanteverythingdone.”Rather,itistheclinicianswhoareresponsiblefordefiningthe“everything”setofinterventionsthataremedicallyreasonable.Fromthese,patientsandfamiliescanchoosethosemostconsistentwiththeirvalues,preferences,andgoals.Itisincreasinglyexplicitinqualitymetricsthatthosegroupsorinstitutionsofferingspecificadvancedtherapiesshouldincludepalli-ativecareandaccesstoongoingcareregardlessofthetherapieschosen.
ContinuationofStageCMedicalTherapies
Whileanticipatingandaddressingnewoptionsthataccom-panythetransitiontoadvancedstageDheartfailure,medicaltherapyusuallyincludesallstageCtherapies.17,61,62The
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BeforeleftventricularleadimplantationorICDdeviceupgrade,thecareteamshouldplanforcontingencies.Forinstance,iftheleadcannotbeplacedtransvenously,willtherebeconsiderationofanopenthoracotomyforplacement,withtheattendantmorbidityofachesttubeandpossiblerecurrentpleuraleffusioninthesettingofchronicallyelevatedrightatrialpressures?Therisk-benefitratiosofthefullcomple-mentofpossibleproceduralvariations,inthecontextofpatientpreferences,shouldbeconsideredbeforeanyproce-duresothatthepatientcanprovidetrulyinformedconsentandaresponsetopotentialadverseoutcomesisplannedapriori.Factorslikelytomodifytherisk-benefitratioofdeviceimplantation,suchasnoncardiovascularmorbidityandacutedecompensation,shouldalsoberecognizedandincor-poratedintothesediscussions.73,74AlthoughCRTpacersandICDscanbepackagedtogether,theirpurposesarequitedifferent.CRT,likeneurohormonalantagonisttherapy,isdesignedtoreverseremodelingandimprovecardiacperformance.AlthoughCRThasbeenshowntoimprovesurvival,italsocanhavesignificanteffectsonsymptomreductionandqualityoflifeinselectpatients.Incontrast,ICDstreatlife-threateningarrhythmiawithoutim-provingsymptoms.Patientsmaynotunderstandthedistinc-tionuntilafterthedevicehasdischargedortheissueofdeactivationisraised.RecommendationforacombinedCRT-defibrillator(CRT-D)deviceshouldpromptseparatediscussionsontheindicationsfordefibrillatorcapacityversuscardiacresynchronization,aswellasdifferencesinneedformonitoring,chancesforinappropriateshocksandworseningheartfailure,risksforinfectionandleadmalfunction,andoptionsfordeactivation.
initialapproachtostageDheartfailureisoptimizationofthesetreatments.Theneedtodecreaseordiscontinueneuro-hormonalantagonistsisamilestone,asdescribedinTable4.
MajorInterventionsThatMightImproveCardiacFunctionandClinicalOutcomes
High-RiskCardiacSurgery
Patientsmaybeconsideredforcardiacsurgeryforcoronary,valvular,andpericardialdisease.Thesesurgeriesarepartic-ularlyhighriskasaconsequenceofthepatient’sadvancedheartfailure.Theseproceduresmaybepursuedeitherwiththehopeofimprovingtheheartfailureconditionorinresponsetoasuperimposeddiagnosissuchasanginaoracquiredaorticstenosis.Itisusuallyanticipatedthattherewillbesubstantialresidualcardiacdysfunctionevenifthesurgeryissuccessful.Althoughtheintentmaybetoimprovecardiacfunction,thebenefitofcardiacsurgeryinmostpatientswithadvancedchronicheartfailureisnotestab-lished.Evenifthecardiacfunctionimproves,thesurgeryandrelatedeventsmayleadtoprolongedmorbidityandpossiblydeath.63Thepotentialforprotractedpostoperativerehabilita-tionandlossofindependencemustbeconsideredandincludedthoughtfullyintheshareddecision,becausesurgeryinherentlyincreasesshort-termriskfortheprospectoflonger-termbenefit.Unfortunately,thereislimitedinforma-tionaboutthefrequencyoftheseoutcomesbeyondgeneralestimatesofprolongedhospitalizationintheSocietyofThoracicSurgeryriskscores.64PercutaneousInterventions
Lessinvasivepercutaneousapproachesforthetreatmentofcoronaryandvalvulardiseasemaybeappealinginadvancedheartfailurebecauseoftheincreasedsurgicalriskamongthesepatients.However,potentialbenefitsdependonavarietyoffactorsandarerelativelyunknownforthead-vancedheartfailurepopulation;meanwhile,risksofcontrast-inducednephropathy65and30-daymortality66aremarkedlyincreasedinthispopulation.Percutaneousapproachestovalvulardiseasearelesswelldevelopedthanforcoronarydisease,butthetechnologyisimprovingrapidly.Catheterapproachestobothaortic67andmitral68diseasehavenowbeenshowntobereasonablealternativestosurgeryincertainpopulations.Thebenefitsofvalverepairorreplacementarelesswellestablishedinpatientswithsignificantheartfailure,especiallywhentreatingfunctional(secondary)mitralregur-gitationforpatientswithadilatedleftventricle.69Theacuteriskofstrokemustbeweighedagainstpotentiallonger-termbenefits.Decisionsregardingpercutaneousinterventionsshouldalsoincludeconsiderationofwhetheremergency“bailout”surgerywouldbeappropriateandfeasible.
PacingDeviceTherapy
Cardiacresynchronizationtherapy(CRT)representsaclini-calchallengeinadvancedheartfailure.PatientswithNewYorkHeartAssociationfunctionalclassIVheartfailurehaverepresentedasmallfractionofpatientsincludedinrandom-izedtrialsofCRT.70Althoughtherearesomereportssug-gestingthatCRTcanimproveoutcomesforpatientstakingintravenousinotropes,thesefindingshavenotbeenconsis-tent,andthereportshavemethodologicallimitations.71,72ICDstoReducetheRiskofSuddenCardiacDeath
ICDsarefundamentallydifferentthanmanylife-savingtherapiesforpatientswithchronicheartfailurewithreducedejectionfraction.NeurohormonalantagonistmedicationsandCRTimprovecardiacfunction,therebyreducingmortality,reducinghospitalization,andimprovingqualityoflife.Incontrast,ICDsimprovesurvivalbyabortinglethalarrhyth-miasbutdonotimprovecardiacfunctionorheartfailuresymptoms.Additionally,ICDscancreateanadditionalbur-denforpatients,particularlyfrominappropriatedischargesandpreventionofarapiddeath.BecauseICDsinvolvethistrade-offbetweenreducedriskofsuddencardiacdeathandanincreasedriskofhospitalization,75potentialdecreaseinqual-ityoflife,76andhigherlikelihoodofprolongeddeathfromprogressivepumpfailure,meticulousdiscussionofabsoluteriskswithandwithoutICDsareparticularlyimportantforinformedconsentandshareddecisionmaking.
TemporaryTherapiesWithPotentialDependence
Sometherapiesareintendedforshort-termusetostabilizepatients,therebyallowingforrecoveryfromreversibleinsultsortransitiontomoredefinitivetherapy(ie,cardiactransplan-tationorpermanentmechanicalcirculatorysupport).Al-thoughinitiallyintendedasatemporaryintervention,suchstabilizingtherapiescancreateindefinitedependenceifthepatientdoesnotimproveashopedordevelopsanadverseevent(eg,stroke,progressiverenalfailure)thatcompromises
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optionsforanticipateddefinitivetherapies.Suchscenariosaredifficultforpatientsandcliniciansandthereforemustbeanticipated.
TemporaryMechanicalCirculatorySupport
Short-termcirculatorysupportwithintra-aorticballoonpumpsorotherdevicesmaybeinitiatedwhenacuteoracute-on-chronichemodynamicinstabilityrequiresurgentinterventiontoavoidpermanentend-organdysfunctionordeath.Itmaybeinstitutedwiththehopeofsupportingareversibleunderlyingcondition,suchasfulminatemyocardi-tisorright-sidedheartfailureafteracutemyocardialinfarc-tion.Itmayalsobeinitiatedinpatientswhomightbepotentialcandidatesfortransplantationorpermanentcircula-torysupport,inwhom(1)therehasnotbeenanopportunitytoappropriatelyevaluatetheircandidacyformoredefinitivehigh-dependencetherapies,(2)reversibilityofend-organdysfunctionisuncertain,or(3)contraindicationstomoredefinitivetherapiesmayresolveinthenearfuture.Ifend-organdysfunctionorcontraindicationsdonotresolve,adecisionwillneedtobemadeaboutdiscontinuation.Towhateverdegreepossible,theseissuesshouldbeaddressedbeforetheinitiationofshort-termsupport.
PositiveInotropicAgents
Intravenousinotropicagentsarecommonlyinitiatedintheacutesettingforhemodynamicstabilizationandtoimproveend-organperfusion.Useismostoftenanticipatedtobetemporary,withthehopeofeitherclinicalimprovementoreligibilityformoredefinitivetherapiesasabove.Regardlessofintent,initiationofinotropicsupportforexacerbationofchronicheartfailureshouldbeconsideredasignificantclinicalmilestone(Table4).Whenpatientsfailtoweanfromintravenousinotropicsupport,decisionsariseconcerningitscontinuedchronicuse.Therefore,thegoalsoftemporaryinotropeuseshouldbeestablishedclearlybeforeinitiation,andunexpecteddependenceonthistherapyshouldpromptdirectdiscussionsaboutoverallgoalsofcareandthelimitedrangeofoptionsavailableatthisjuncture.
Thedecisiontoarrangeforchroniccontinuousinfusionsafterhospitaldischargeshouldbeguidedbytheneedforsymptomreliefandpatientpreferences.Agreementonthegoalsoftherapyandvarious“whatif”scenariosshouldbereachedbeforeinitiation.Nonrandomizeddatasuggestthatthenumberofhospitaldaysmaydecreaseafterinitiationofchronicinotropeinfusion,77withanincreasedriskofsuddencardiacdeath.78,79However,themajorityofpatientsrequirehospitalreadmissionafterinitiationofchronicintravenousinotropictherapy,evenifbegunwiththehopeofhelpingpatientstostayathomeuntildeath.TheuseofintermittentinfusionstocontrolsymptomsiscurrentlynotrecommendedbyAmericanHeartAssociation/AmericanCollegeofCardi-ologyguidelines(classIIIrecommendation).17Astrategytocontinueintravenousinotropictherapyforsymptomreliefandreturnhomeshouldnottriggerimplan-tationofanICD,unlessthepatientisawaitingdefinitivetherapysuchastransplantation.Themajorityofpatientsonhomeinotropicinfusionsdieby6months,andalmostallaredeadby1year,mostoftenofterminalhemodynamicdecompensation.
DecisionMakinginAdvancedHeartFailure9
RenalReplacementTherapy
Theprevalenceofadvancedkidneydiseaseincreasesdramat-icallywithworseningheartfailure,80andmeasuresofrenaldysfunctionarestrongpredictorsofadverseoutcomesinpatientswithheartfailure(Table3).Conversely,approxi-mately33%ofindividualswhocommencehemodialysishavearecordeddiagnosisofheartfailure,andtheirmortalityratesaresignificantlyhigherthanpatientswhoinitiatedialysiswithoutaheartfailurediagnosis(adjustedrelativeriskof1.22intheUSRenalDataSystem).81Dialysisinthesettingofadvancedheartfailure,especiallyinolderpatientswithothercomorbiditiesorfrailty,hasbeenshowntoaddtopatientburdenandinhigh-riskpatientsmaynotextendlife.82,83Therefore,thedecisiontoinitiaterenalreplacementtherapies(eg,hemodialysis,ultrafiltration)inpatientswithadvancedheartfailureshouldonlybemadeafteracleardiscussionwiththepatientabouttherisksandbenefitsofdialysisonthepatient’squalityoflifeandprognosis.84TransplantationandMechanicalCirculatorySupport:ExchangeofDisease
Cardiactransplantationandmechanicalcirculatorysupportofferthepotentialtofundamentallychangetheclinicalcourseofheartfailurebyexchangingitforsurgicaltherapyandtheneedtoadjusttolivingwithadifferentsetofbenefits,risks,andburdens.Inthecaseoftransplantation,patientsmustadapttotherisksoforganrejectionandimmunosuppressionanditssideeffects.Forpermanentlyimplantedmechanicalcirculatorysupport,patientsaredependentonadevicewithmajorcomplicationsofinfectionandstroke,aswellasthepotentialforcontinuedsymptomsandrequiredtherapiesforright-sidedheartdysfunction.Thus,foreligiblepatients,whethertopursuethesetherapiesrepresentsoneofthemostdifficultdecisionsthatpatientsandclinicianscanmake.However,thesetherapiesarelimitedtoahighlyselectedgroupofpatients.Theuseofcardiactransplantationisconstrainedbyalimitedsupplyofdonorhearts,asituationthatwillnotlikelychangeintheforeseeablefuture.Theuseofmechanicalcirculatorysupportmayincreaseasthetech-nologyimprovesbutislikelytoremaininappropriateforthemajorityofpatientswithheartfailurebecauseofthepredom-inanceofheartfailurewithnormalejectionfraction,multiplecomorbidities,orveryadvancedage.15,16Detailedclinicalpracticeguidelinesareavailablethataddresstheuseoftheseadvancedtherapies.85–87NoncardiacProceduresinthePatientWithAdvancedHeartFailure
Therisksandbenefitsofinterventionsfornoncardiaccondi-tionsmaybealteredsignificantlyinpatientswithadvancedheartfailure.Whenthelikelihoodofmeaningfulrecoverywithouttheprocedureissmall,theincreaseinproceduralriskassociatedwithheartfailuremaybeconsideredacceptable.Examplesincludebothemergent(eg,laparotomyforperfo-ratedviscous)andurgent(eg,hiparthroplastyforfracture)surgicalprocedures.Otherprocedures,suchaskneereplace-mentfordegenerativejointdisease,mustbeconsideredcarefullyinthecontextofpatientpreferences,becausecomplicationsoftheproceduremayormaynotoutweighthe
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patientandcaregiverneedsareassessedandmet.Becauseofthecomplexandchangingnatureofheartfailureandthecomplexityofconversationsastheychangeaccordingtothepatient’sunderlyingheartdisease,itisimportanttointegratepalliativecareintothecareofpatientswithheartfailurebeforetheyenterstageD.Evenaspatientsarebeingconsideredfortransplantation,mechanicalcirculatorysup-port,ortrialsofnoveltherapeuticsandpharmacologicalagents,palliativecarecanbeincreasinglyintegratedtoensurethatpatients’symptomsareappropriatelycontrolledandthatpatientsunderstandthenatureoftheseinterventions,aswellasthefullcomplementofalternativetherapies.95,96Thesynergisticrelationshipbetweenpalliativecareservicesandtheheartfailureteamforpatientswithmechanicalcirculatorysupporthasbeenreviewedrecently.95potentialbenefit.Proceduresshouldbediscouragedwhentheydonotofferatangibleimprovementinqualityoflife(eg,repairofasymptomaticabdominalaorticaneurysm).Place-mentofpermanentperitonealandpleuralcathetersforthecontrolofvolumestatusisnotindicatedunlessincorporatedintoacomprehensivepalliativeplanofcare.Similarly,routinepreventivecarescreeningtests(eg,mammography,prostate-specificantigen)aretypicallynotappropriateinthecontextofasignificantcompetingriskofmortalitycausedbyadvancedheartfailure,yetsuchtestsarefrequentlyorderedattheendoflife.88AnticipatingDecisionsforUnanticipatedEvents
Theprocessofclarifyingpreferencesforcardiopulmonaryresuscitation,intubation,feedingtubes,implantabledefibril-latordeactivation,intensivecareunittransfer,andothernearend-of-lifeinterventionsbeforetheoccurrenceofanear-terminaleventoracute-on-chronicdecompensationisanimportantaspectofshareddecisionmaking.Thereislitera-tureonthetypeandscopeofthesediscussions,89,90withsuggestionstomakethemanannualeventinroutinemedicalcare.60(p73406)Suchanticipatorydiscussionsshouldincludeadvancecareplanningguidedbytheconceptthatitisproperto“planfortheworstwhilehopingforthebest.”Itisalsocrucialforthecareteamtomakeclearthatclinicianaban-donmentwillnotoccur;thatis,theclinicianswillworkwiththepatientandfamilyindownstreamdecisionmakingandmanagement.
End-of-LifeCarePlanning
●
●●
Cliniciansshouldtakeresponsibilityforinitiatingthedevelopmentofacomprehensiveplanforend-of-lifecareconsistentwithpatientvalues,preferences,andgoals.DeactivationofanICDisdesirabletoavoidunnecessarypainanddistressforpatientsandfamiliesattheendoflife.Activediscontinuationofmechanicalcirculatorysupportisoftenappropriateandnecessaryattheendoflife.
PlanningforAnticipatedDeath
Althoughtheprognosticuncertaintyinherentinheartfailuremakesitdifficulttoaccuratelyanticipatetheendoflife,somepatientsenteraterminalphaseofthediseasethatmayberelativelyapparenttothepatientsand/ortheirclinicians.Insuchsituations,whenthegoalsofcareoftentransitionfromafocusonsurvivaltoqualityoflifeandensuringagooddeath,cliniciansshouldtakeresponsibilityforinitiatingtheprocessofputtingintoplaceacomprehensiveplanofcareconsistentwithpatientvalues,preferences,andgoals.
PalliativeCare
Palliativecareisinterdisciplinarycareaimedatimprovingqualityoflifeforpatientsbypreventingandrelievingsufferingandsupportingfamilies.91Assuch,itcanbeofferedsimultaneouslywithallotherappropriatemedicaltherapies.Palliativecareisnotsynonymouswithend-of-lifecareorhospicebutcanencompassthemasthediseaseadvances.Palliativecareallowsforcontinueddisease-modifyingther-apieswhileensuringsymptomreliefandinterventionsthataddresspsychosocial,physical,andspiritualneeds.Thisisdonein2ways:bytreatingsymptomsandbyensuringthatpatients’treatmentplansmatchtheirvaluesandgoals.92–94Theprocessofshareddecisionmakingisacentraltenetofpalliativecare:thatthepatientandclinicianreachanunder-standingaboutpreferencesforlife-prolongingtherapy,symp-tomrelief,paincontrol,andend-of-lifecare.Unlikehospicecare(“UseofHospiceServices”),theapplicationofpalliativecareisbasedonpatientneedratherthanpatient’sprognosisorlifeexpectancy.
Althoughdataonpalliativecareinpatientswithheartfailurearelimited,severalguidelinesandreviewsrecom-mendintegrationofpalliativecareforallpatientswithadvancedheartfailure.19,89,90Thiscanandshouldbedonebyallcliniciansinvolvedinthecareofthesepatients.However,referraltoapalliativecareteamshouldbeconsideredforassistancewithdifficultdecisionmakingandrefractorysymptommanagementinadvanceddisease,evenaspatientscontinuetoreceivedisease-modifyingtherapies.Palliativecareteamscanconsistofphysicians,nurses,socialworkers,chaplains,andotherprofessionalswhoworktoensurethat
PassiveWithdrawalofTherapies:DeactivationofICDs
TheoptionandeaseofICDdeactivationshouldbediscussedbeforeimplantationandagainformajorchangesinclinicalstatus(Table4)ortransitionsingoalsofcare.97Atpresent,thisisdoneonlyrarely,thusleavingmanypatientsvulnerabletoinappropriatedevicedischargeandunnecessarysuffering.Arecentsurveyfoundthatonly1in4nextofkinreportedthataphysicianhaddiscusseddevicedeactivationwiththeirdeceasedfamilymemberbeforedeath.98Inanationwidesurveyof734physicians,including292cardiologists,60%hadfewerthan3experiencesdiscussingdeactivationofICDswithpatientsand/orfamilies.99Concordantwiththosefind-ings,anationalsurveyofhospicesfoundthatϽ10%ofhospiceshaveapolicyregardingdeactivationofICDs,andϾ50%ofhospiceshadatleast1patientwhohadbeenshockedwithinthepastyear.100Foradevicenearitsend-of-batterylife,thegeneratorshouldnotbechangedwithoutcarefulreviewofwhetherornotactivedefibrillationisconsistentwithoverallgoalsofcareandanticipateddurationofgood-qualitysurvival.
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ActiveWithdrawalofTherapiesWhenPatientsAreDependentonThem
Althoughthelegalconstructofpatientautonomydoesnotrecognizedifferentdegreesofdependenceontherapiestobewithdrawn,clinicians,patients,andfamiliesmayviewsce-nariosinwhichwithdrawalleadstodirectandrapidpatientdemiseasuniqueandemotionallydifficult.Examplesincludewithdrawalofrenalreplacementtherapy,feedingtubes,orpacemakersupportforpatientsdependentoncardiacpacing.Anincreasinglycommonscenarioisthewithdrawalofmechanicalcirculatorysupportdevices,eithertemporaryordurable,inpatientswhoarenotexpectedtorecovertoreturntoaqualityoflifetheyconsideracceptable.95Theaveragelifespanofapatientafterimplantableleftventricularassistdevice(LVAD)placementhasbeenincreasingovertime,101butmorbidityandmortalityremainhigh.EstimatedactuarialsurvivalintheHeartMateIIdestinationtherapytrialwas58%at2years.102Withimprovementsinmedicaltechnologyandassociatedoutcomes,patientsmaintainedwithmechanicalcirculatorysupportmaynotonlybesusceptibletodeathattributabletocardiovascularcausesbuttootherlife-limitingdiseaseaswell.Thediscussionaboutdiscontinuingdevicetherapyshouldbepartofthe“whatif”informedconsentprocessbeforeimplantation.Subsequently,althoughtherearenospecificrecommendationstodirectwhenthesetherapiesshouldbediscontinued,itappearsthatdecliningqualityoflife,signsofotherorgansystemfailure,oranirreversiblecatastrophicadverseeventsuchasamajorstrokeorhemor-rhageshouldtriggerseriousdiscussionsaboutdevicedeacti-vation.Inarecentsmallstudyofcharacteristicsofpatientsforwhommechanicalcirculatorysupportwaselectivelydiscontinued,themostcommontriggersfordiscontinuationincludedsepsis,stroke,cancer,renalfailure,andimpendingpumpfailure.203DespitetheperceptionthatLVADsmayimposespecialethicaldilemmas,91thePatientSelf-DeterminationActstillbroadlyapplies,givingthepatient,ortheirsurrogatedecisionmaker,fullautonomytowithdrawsupport.
Devicedeactivationcanbeperformedinthehospitalorathome,attendedbyadevice-trainedindividual(ventricularassistdevicecoordinator)andothersasrequested(hospicenurse,chaplain,etc).Beforedevicedeactivation,adiscussionwiththepatient(ifabletoparticipate)andfamilyaboutthepatient’scurrentconditionandprognosis,changesindevicebenefitprofile,howthedevicewouldbestopped,howsymptomswouldbemanaged,readinesstoproceed,andanticipatedoutcome(ie,rapiddeath)isvaluable.UnlikeICDs,whichcanbedeactivatedwithoutimmediateeffect,LVADdiscontinuationcanresultinrapiddecompensationandexpeditedeath,particularlywithvalvelesscontinuous-flowdevices.Theaveragetimetodeathafterdevicedeacti-vationisapproximately20minutes,whichindicatesthatathoughtfuldiscussionandcarefulplanshouldbeinplacewellbeforethedeviceisdiscontinued.71Thisclinicalscenariohasbeenlikenedtowithdrawalofendotrachealintubationandventilatorysupport,althoughpatientswithLVADsupportaremorelikelytobeawakeandalertatthetimeofdecisiontodiscontinuesupport.Ifpatientsareonmultipleformsofsupport(eg,mechanicalventilatorysupportandLVADsup-
port,withanICDalsoinplace),acoordinatedplantodiscontinueallofthesetherapiessimultaneouslyisneeded.
UseofHospiceServices
Forpatientsapproachingtheendoflife,hospicemaybeaviableoptiontoprovidesymptomcareandsupportiveser-vicesforpatientsandtheirfamilies,whilealsoensuringthatpatientsareabletodieintheirpreferredenvironment.TobeenrolledintheMedicarehospicebenefit,2physiciansoraphysicianandanursepractitioner(oneofwhomisoftenthehospicemedicaldirector)mustcertifythatthepatienthasՅ6monthstoliveifthediseasefollowsitsusualcourse,andthepatientmustbewillingtoforegousualmedicalservicesaimedatcuringtheunderlyingterminaldiagnosis.104Mostprivateinsurershaveahospicebenefitsimilartothatpro-videdunderMedicare.Althoughhospiceisprovidedinavarietyofenvironments,105itismostcommonlyprovidedforpatientsathomewiththegoalofkeepingthemintheirhomeuntildeath.Hospicecanofferanumberofbenefitstoenrolleesandtheirfamilies,includinginterdisciplinaryteammanagement,homevisits,respitecare,andprovisionofmedicationsanddurablemedicalequipment.Hospicealsoincludesanursewhocanalwaysbecontactedtoadviseonurgentsymptomneedsandprovidereassurancethatinterven-tionsareappropriate.
Customizedcareplansmayprovidecomfortandreliefforsomepatientsunwillingtoacceptformalhospicesupport.Inmanycases,patientsfeeltheyare“notreadyforhospice,”andthesepatientsshouldbereferredtopalliativecaretoensureexpertcontroloftheirsymptoms,aswellassupportforthefamily.Likewise,continuededucationaboutthebenefitsofhospiceandthefactthatfamiliesareoftenmoresatisfiedwithhospicecarethancareprovidedinthehospitalmayalsohelpelucidateitsbenefits.106OnestudyofMedicarebeneficiarieswithheartfailurewhoreceivedhospicedemonstratedalongersurvival(by81days)thanforthoseheartfailurepatientswhodidnotreceivehospice.107Hospiceserviceshavebeenshowntoimprovepatientandfamilysatisfactionwithcare.Familiesofthosedyingwithhospiceservicesweremorelikelytoratetheirdyingexperi-enceas“favorableorexcellent”thanthosewhodiedinaninstitutionorathomewithonlyhomehealthservices.106Fewerthanhalfofallpatientswithheartfailurereceivehospice.Thisis,however,amarkedincreasefromϽ20%ofheartfailurepatientsbeingenrolledinhospiceadecadeago.108Appropriatetimingofreferraltohospiceisimportant,becausethefamily’sperceptionofbeingreferred“toolate”isassociatedwithgreaterdissatisfactionandunmetneeds.109CommunicationandtheDecision-MakingProcess
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Trustisthebasisforthecollaborativeshareddecision-makingprocess.
Earlysolicitationofvalues,goals,andpreferencesisnecessarytoguidetherangeofpossibletherapyoptionsanddecisions.
Shareddecisionmakingisaniterativeprocessthatevolvesovertimeasapatient’sdiseaseandqualityoflifechange.
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characterizedbyunpredictableperiodsofacuteillness,fol-lowedbyimprovementinsymptomsandfunction(Figure1).19,21,125,126Attendingtothisuncertaintyinvolvesbothacknowledgingthecognitiveaspectoftheconversation(eg,explainingtopatientsandfamiliestheunpredictablenatureofillnessandrecognizingtheinabilityofmodernmedicinetoaccuratelypredictlifeexpectancy),whilesimultaneouslyaddressingthecomplexemotionsassociatedwiththe“rollercoaster”ofheartfailure(eg,fear,anxiety,anduncertainty).Second,thechronicnatureandunpredictabilityofheartfailurerequirethatcommunicationbeviewedasanevolvingseriesofdynamicconversationsthattakeintoaccounttheoverallgoalsofthepatientandfamily,thecurrentstateofheath,andtheshiftingbalancebetweenbenefitsandburdensofanytreatmentortestthatiseithercurrentlybeingusedorthatisbeingconsidered.Patients’preferencesmaychangeovertimeastheirillnessprogressesandtheirexperiencewiththediseasechanges,whichfurtherunderscorestheimpor-tanceofanongoingdialoguewithpatientsandtheirfami-lies.39,56,127Forexample,in1studyof936patientswithadvancedheartfailure,19%hadchangedtheirpreferencesforresuscitationwithin2months.56Tocommunicateeffectively,cliniciansmustbothdeter-mineandthenreaddressovertimepatients’understandingoftheirheartfailureandtheirgoalsandtreatmentpreferences(Table4fortiming)andthendeterminehowtohavetheseconversationswithinthescopeofclinicalcare.Forexample,whenapatientisbeingseenfortheirfirstofficevisitafterahospitalizationforheartfailure,itmaybeusefultoreaddressgoalsofcarefromaglobalperspective,askinghowthepatient’sthoughtsabouthisorherheartdiseasehavechangedsincethelasthospitalization.Inthecasewhereemergentdecisionmakingisneeded,theclinicianmightacknowledgehowtheconversationwaslastaddressedandthenbringupthespecificemergentdecision(s)athand.
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Assessmentandintegrationoftheemotionalreadinessofthepatientandfamilyarevitaltoeffectivecommunication.Ask-Tell-Askprovidesausefulframeworkforcommuni-catingaboutprognosisandgoals.
Successfulconflictresolutioninvolvesearlyrecognitionofconflictunfolding,withashiftinfocusfromwinninganargumenttotryingtounderstandthereasonsforconflict.Decisionaidsaretoolsthatcanenhanceshareddecisionmakingbypresentingnumericdatainmoreunderstandablewaysandassistingpatientsinclarifyingtheirvalues.
Mostpatientsandfamilieswantaccurateandhonestconver-sationswiththeirclinicians.110,111Onestudyfoundthat93%ofsurrogatedecisionmakersfeltthatavoidingdiscussionsaboutprognosiswasunacceptable.110Advancedheartfailure,withitshighdegreeofprognosticuncertaintyandcomplextrade-offsinthechoiceofmedicalcare,demandsathoughtfulapproachtocommunicationanddecisionmaking.Ideally,theseinteractionsarenot1-timeeventsbutoccurasanevolvingseriesofdiscussionsovertime,particularlyasapatient’sconditionchanges.Suchinteractionsmaybediffi-cultandtimeconsuming,andtheyoftenrequireplanningtocreateasupportiveenvironmentforeffectivecommunication.Thesediscussionsrequirecarefulattentiontobothmentalandemotionalneeds.Cliniciansmustdeterminehowmuchquan-titativeinformationpatientswantaboutprognosis,compara-tiverisks,andbenefitsforbothlengthandqualityoflifewithavailabletherapies.Atthesametime,cliniciansmustattendtotheemotionalnatureofconversationswithpatientstobuildtrust,clarifycorevalues,andallowforsharperfocusontheinformation.Here,weprovideanoverviewofthetasksandskills,alongwithsamplephrases,thatcancreatehigh-qualityshareddecisionmaking(Table7).
CommunicationIsDesired,Beneficial,andDynamic
Open,clear,andaccuratecommunicationwithpatientswithheartfailureisimportantforseveralreasons.First,themajorityofpatientswithseriousillnesswantinformationabouttheirillnessandtobeincludedinthedecisionmakingprocess.116–118Second,whenclinicianshaveconversationswithpatientsabouttheirprognosisanddesires,patientsaremorelikelytoreceivecarethatisalignedwiththeirgoalsandpreferences.119–121Theseconversationsalsoimprovethepatient-clinicianrelationship.122Finally,whenconversationsoccur,familiesofdeceasedpatientshavebetteroutcomesintermsofthemannerinwhichtheycopewithlossoftheirlovedone,aswellastheirownpsychologicalout-come.110,121,123Onerandomizedtrialofanadvancedcareplanninginterventiondemonstratedthattheinterventionin-creasedthelikelihoodthatthepatient’spreferenceswereknownandfollowed(86%versus30%,PϽ0.001)andde-creasedfamilymembers’stress,anxiety,anddepression.121Althoughmanyofthedataaboutbenefitsofcommunicationinpatientswithadvancedillnessarefromthefieldofoncology,theevidencebasedemonstratingsimilarresultsincardiologyisincreasing.124Thebiologicalrealityofheartfailuremakescommunica-tionparticularlydifficultfor2reasons.First,heartfailureis
ARoadmaptoGuideConversations
Physiciantrainingintheconductofthesediscussionsislimitedandneedstobefortified.128,129Furthermore,theworkofshareddecisionmakingbelongsnotonlytophysiciansbuttoothermembersofthehealthcareteamaswell,specifictotheirrolesandresponsibilities.Althoughadditionaltrainingandmentoredexperienceareclearlydesirable,thissectionprovidesanintroductoryroadmapofhowtoeffectivelycommunicatewithpatientswithadvancedheartfailuretofacilitatetheshareddecision-makingprocess.Itismeanttorepresentanidealizedversionofcommunication,withtherealizationthatthismustbebalancedwithothercompetingresponsibilitiesandclinicians’limitedtime.Thegoalistooffereffectivestrategiestoimproveconversationsanddeci-sionmakingbydemonstratinghowcomplexconversationscanbebrokendownintodiscreteelements,makingthemeasiertoaccomplish.Notallconversationswillincludealloftheseelementseverytime.Thegoalistoofferasimpleoutline(alongwithsomehelpfulphrasesandtools)thatmaymakeconversationssimplerforthebusyclinician.Morecomprehensiveexplanationsabouthowtocommunicatewithpatientswithadvancedillnessareavailable.94,112,130Downloaded from http://circ.ahajournals.org/ by guest on March 12, 2012
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Table7.
DecisionMakinginAdvancedHeartFailure13
CoreTasks,Skills,andSamplePhrasestoImproveClinician-PatientCommunicationinAdvancedHeartFailure
ElementsoftheStep
Determinewhoshouldbepresentandensurethatallappropriatecliniciansarepresentaswell
ASKwhatpatients/familiesknow
SamplePhrases
“Inpreparationforourmeetingtomorrow,I’mgoingtohavethecardiothoracicsurgeontheretobeapartofour
conversation.Intermsofyourfamilyorsupportnetwork,whoisitimportantthatwemakesureisthere?”
“Tellmeaboutyourheartdisease;howhaveyoubeendoinglately?”
“Whatisyourunderstandingofwhatisoccurringnowandwhyweareconsideringthetreatmentthatwehavebeendiscussing?”
ASKwhatpatients/familieswanttoknow
“Sometimepatientswhattoknowallthedetails,whereasothertimestheyjustwanttoknowageneraloutline.Whatkindofpersonareyou?”
“Howmuchinformationwouldyouliketoknowaboutwhatishappeningwithyourheartdisease?”
TELLthepatient/familytheinformationinasympatheticandthoughtfulmannerwhilealsoclearingupanymisconceptionsorunansweredquestions
ASKthepatientorfamilytorepeatbacktheinformationthathasbeendelivered
“Ithinkyouhaveaprettygoodunderstandingofwhatishappeningwithyourheart,butthereareafewpointsI’dliketoreviewandclarify”
“NowthatI’veclarifiedafewthingsaboutyourillness,IwanttomakesureyouunderstandwhatI’vesaid.Tellmeinyourownwordswhatwe’vebeentalkingabout”
“Helpmetounderstandwhatisimportanttoyou.Somepatientssaytheywanttoliveaslongaspossible,regardlessofqualityoflife.Sometimespatientstellmetheyareworriedthattheywillbeinagreatdealofpainorhaveother
uncontrolledsymptoms.Whatisimportanttoyouatthispointintermsofyourhealthcare?”“Whatareyouhopingfor?”“Whatisimportanttoyounow?”“Whatisyourbiggestconcernrightnow?”
“Whenyouthinkaboutthefuture,whatarethethingsyouwanttoavoid?”
Incasesinwhichthepatientisnotinvolvedinthe
conversation,ausefulphrasemightbe,“Whatwouldyourlovedonesayrightnowifheorshewerehearingwhatwearediscussing?”
StepsintheRoadmapEstablishthesettingandparticipants
Determinewhatpatientsknowandwanttoknow
Establishgoalsandpreferences
Useopen-endedquestionstogain
understandingofthepatient’svaluestodeterminewhatismostimportanttothem
Workwithpatientandfamilytotailortreatmentsanddecisionstogoals
Tailorexplanationofbenefits/burdensofaparticulartherapybasedongoalsestablished
“IthinkIunderstandwhatisimportanttoyounow,andithelpsmebetterexplaintoyouthedecisionsandtreatmentsathandnow.I’dliketotakeamomenttoreviewthebenefitsandburdensofeachofthetreatmentsbasedonwhatyou’vesaidisimportanttoyouatthispoint”
“WoulditbehelpfulifImadearecommendationbasedonwhatyou’vesaidtheoverallfocusofcareshouldbenow?”“Basedonwhatyouhavetoldme,ifyougetsickerandneedtogobackonabreathingmachineagaintostayalive,thatisveryunlikelytoprovidethekindoflifeyouwanttolead.
Therefore,Ithinkyoushouldnotgobackonthosemachines”“Oneofthemostdifficultthingsaboutheartdiseaseisthatwecanneverknowforsureexactlywhatwillhappeninthenext(hours,days,weeks,etc).Wemustmakeourbestguessanddecidewhattodobasedonthatinformation.Ifthingschange,wecanalwaysreaddressthisdiscussionatanytimeinthefuture”
Bewillingtomakearecommendationbasedonthepatient’sgoals
Acknowledgethatthereisuncertaintyinthecourseofheartfailure
Adaptedfromothers.112–115WhereAreWeontheRoad?Ask-Tell-AsktoDetermineWhatPatientsKnowandWanttoKnow
Beforeonecanembarkonconversationswithpatientsandtheirfamilies,itisimportanttoestablishtherightcontextfortheconversation.Thisincludesaskingwhetherthepatientwantstohavetheconversationbythemselvesorwouldlikeotherindividualspresent,rememberingthatpatientsoftendefinefamilyinamyriadofways.Creatingtherightsettingalsoinvolvesensuringthattherightcliniciansarepresent,oratleasthavebeenconsulted,beforetheconversationbegins.
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allowingtreatmentsandcaretobeascloselytailoredtothosedesiresaspossible.Thisisespeciallytrueinlightofthefactthatphysiciansareoftenwrongaboutpatients’desiresforcare.56Optimalcommunicationwithpatientswithadvancedheartfailuredoesnotbeginwithquestionsabouttreatments.Askingapatientduringaroutineofficevisit,“Doyouwantustotryandrestartyourheart?”isunlikelytobeaneffectivestartingpoint.Thistaskisespeciallydifficultbecauseitinvolvesweighingdesiredoutcomesthatmaybecontradic-tory(eg,avoidingseveredisabilitywhilemaximizingsur-vival).Thisstepthennotonlyoutlineswhatthepatienthopesforbutalsoconsiderscomplextrade-offsandsituationsthepatientmightconsidera“fateworsethandeath.”
Open-endedquestionstogaininsightintothepatient’slifeandvaluesareausefulmethodforinitiatingthisportionoftheconversation.Examplesinclude,“Whatisimportanttoyounow?”or“Whatareyouhopingfor?”Anothertechniqueinvolvesaskingpatientstodiscusswhatisimportantinlifeoutsideofthehospital;thishelpsthecliniciantounderstandwhatpatientsaredoinginday-to-daylife,howmuchpatientsvaluethosetasks,andhowpatientsviewthosetasksinthefuture.Italsomaybeusefultoinquireaboutapatient’sworriesorconcerns,usingquestionssuchas,“Whatisyourbiggestconcernrightnow?”or“Whenyouthinkaboutthefuture,whatarethethingsyouwanttoavoid?”Incasesinwhichthepatientisnotinvolvedintheconversation,eitherbecauseofillnessseverityorbecausethepatientchoosesnottotakepartintheconversation,ausefulphrasemightbe,“Whatwouldyourlovedonesayrightnowifheorshewerehearingwhatwearediscussing?”
Whenadvancedheartfailurepatientsdiscusstheirgoals,theyoftendiscussqualityoflife;thatis,theytypicallyarenotonlyconcernedabouthowlongtheywilllivebutalsohowwelltheywilllive.Thisisespeciallytruegiventhatpoorqualityoflife(limitedabilitytoperformdailyactivities,significantsymptomburden,emotionaldistress,andsocialisolation)isoftenreportedbypatientswithadvancedheartfailure.42,134,135Afterclarifyingthepatient’sgoals,itisoftenusefultosummarizewhathasbeenexpressed.Inadditiontoensuringthattheclinicianhasheardandunderstoodthesehopescorrectly,doingthisalsodemonstratescareforthepatientandthattheclinicianisattendingtotheirneeds.Thismaystartwithphrasessuchas,“LetmeseeifIunderstandwhatyouaresaying.”
EnsuringtheRoadIsAlignedWiththeDesiredDestination:TailoringTreatmentstoGoals
Aftergoalshavebeenclarified,theconversationcanthenmovetodiscussingtheroleofspecifictreatmentswithinthecontextofthedesiredoutcomes.Thisinvolvesworkingwiththepatientandfamilyto(1)summarizetherangeofmedi-callyreasonabletreatmentsforthisparticularpatientatthisparticulartimeandthen(2)explaintherisksandbenefitsofeachtreatmentoptionwithinthepersonalizedrubricofgoalsanddesiressetforthbythepatientandthefamily.Workingwithinthiscontext,theclinicianhelpsthepatientunderstandwhichtreatmentsaremostappropriateorinappropriate,basedontheirlikelihoodofgettingthepatienttothedesired
Theindividualleadingthemeetingideallywillhavespokentoallthecliniciansinvolvedinthecareofthepatientsoallpointsofviewarerepresentedandeveryoneis“onthesamepage”intermsoftheillnessandtimelydecisions.
Beginbyaskingthepatientandfamilywhattheyknowandwanttoknow.Inthissystem,oftencalledAsk-Tell-Ask,113,131theclinicianbeginsbyaskingpatientsandtheirfamiliesbothwhattheyknowabouttheirdiseaseorthetreatmentbeingconsideredandhowmuchinformationtheywant.Nearly80%ofpatientswantinformationabouttheirillness,andthisnumberrisesaspatients’diseaseprogresses.ACochranereviewofdecision-makingtrialsdemonstratedthataspatientslearnmoreabouttherisksandbenefitsoftherapies,theproportionpreferringtotakeanactiveroleindecisionmakingincreasesto85%.132However,theonlywaytoassesspatients’wishesisbyaskingandprovidingthepatientthislocusofcontrol,whichgeneratestrustthatisessentialforcollaborativedecisionmaking.Anexplicitwaytoaskis,“Wouldyouwanttoknoweverythingaboutyourillnessorthetreatmentsweareconsidering,evenifitwasn’tgoodnews?”Whenpatientsandfamiliesexpresstheydonotwantcertaininformation,thisshouldbeexploredfurther,withtheexplanationthatinformationmaybehelpfulforimprovingtheirunderstandingandtomakesurethatthedecisionsareconsistentwiththepatient’swishes.Denialandotherdefensemechanismsshouldnotbeignoredbutinsteadcarefullyaddressedandmanaged(“EmotionalRoadblocks”below).
Oncebasicexpectationsforinformationexchangehavebeenestablished,cliniciansconveyinformationtothepatientandfamilyinaclearandthoughtfulmanner,whilealsoclearingupanymisconceptionsorunansweredquestionstheymighthave.Thisisthe“Tell”inAsk-Tell-Ask.Itisimportanttoinitiallyfocusonthelargerpictureofthepatient’shealth,becausetheabilitytocognitivelyhearinformation,particu-larlyinstressfulsituations,islimited.133Givingallofthemedicaldetailsmayeasilyoverwhelmthepatientandmayalsoleadhimorhertofocusondetailsthatultimatelyarenotcritical.Theinformationshouldbedeliveredinsimplelanguagewithfrequentpausestoassesspatientandfamilyunderstanding.
Thelast“Ask”ofthe“Ask-Tell-Ask”processinvolvesaskingthepatientorfamilytorepeatbacktheinformationthathasbeendelivered,toassesstheirunderstanding.Thisallowsthecliniciantodeterminethelevelofunderstandingthepatientand/orfamilyhaveandclarifyanyelementsthatmayremainunclearintheirminds.
TheAsk-Tell-Asktechniqueismeanttobeiterativeandcanbeappliedtomanydifferentlevelsoftheprocessofcommunication.Forincreasinglycomplicatedtreatmentsandsituations(eg,destination-therapymechanicalcirculatorysupport),Ask-Tell-Askislikelytobeanextensiverecurrentprocessthatwilloccurovermultipleencounterswiththepatientandfamily.Particularlycomplicateddecisionsmaybeaugmentedwithdecisionaids(below).
WhereDoesthePatientWanttheRoadtoGo?EstablishingValues,Goals,andPreferences
Oneofthecoreelementsofgoodcommunicationisthatitassessespatients’values,goals,anddesiredoutcomes,thus
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outcome.Thisis,infact,thecoreofshareddecisionmaking:Thecliniciandoesnotdictatetreatments,nordoestheburdenofthedecisionrestsolelywiththepatientandfamily.Instead,the2partiesworktogethertodeterminewhichoptionsortreatmentsmakethemostsensegiventhepatient/family’sdesiredoutcomesinthecontextofthecurrentclinicalscenario.Insomecases,patientsorfamiliesmaybeabletocometoadecisionontheirownoncethetreatmentsandprobableoutcomeshavebeenpresented.However,eveninthesecases,familiesreporttheywanttoknowwhatthephysicianwouldrecommend.136Inothercases,thepatientandthefamilymaysignaltheywantmoreguidance(eg,“Whatwouldyoudoifitwereyourmother?”)Inthesecases,itisappropriatetoofferarecommendationbasedonthepatient’sstatedgoals(eg,“Givenwhatyouhavetoldmeaboutwhatisimportanttoher,Ithinkthetreatmentthatmakesthemostsensetogethertothedesiredgoalis….”).Uncertaintyaboutoutcomesofspecifictreatmentsandout-comesshouldbecommunicatedhonestlyandopenlywithpatientsandtheirfamilies.
DecisionMakinginAdvancedHeartFailure
Table8.UsingtheN-U-R-S-EMnemonictoHelpExpressVerbalEmpathyWhenCommunicatingWithPatientsWithAdvancedHeartDisease
TechniqueNametheemotion
SampleLanguage
15
Understandtheemotion
Respecttheemotion
Supportthepatient
Exploretheemotion
Youseemworriedaboutwhatwillhappenifwedon’timplanttheLVAD.Canyoutellmemoreaboutthat?
Iseewhyyoumightbefearfulof
proceedingwiththetransplant.Canyouhelpmeunderstandwhatyou’reafraidof?Youhaveshownalotofstrengthuptothispoint.Tellmemoreaboutwhatkeepsyougoing
Whetherornotyouchoosetohavetheprocedure,IwantyoutoknowthatIwillcontinuetobeyourcardiologistandwilltakecareofyounomatterwhathappensYoumentionedearlierthatyou’reconcernedaboutwhatthisworseningofyourshortnessofbreathmightmean.Canyoutellmemoreaboutyourconcerns?
TipsforNavigatingBarriers
Thesecomplexconversationswithpatientsandfamiliesfaceseriouschallengesandbarriers.Thissectionoutlinessomeofthosechallengestoinformbusycliniciansandincreasetheirawarenessofthem.Wheneverpossible,solutionsandap-proacheswithwhichtonavigatethesepotentialroadblocksareoffered.Theseelementsmaybeencountered(orsolutionsutilized)atanypointinthedecision-makingprocessandthusoperateinconjunctionwiththeroadmapdescribedabove.AcknowledgingEmotionalRoadblocks
Difficultdecisionmakingcanstimulatecomplexemotions.Engagingpatientsinselectingtreatmentsalignedwiththeirinformedgoalsandvaluesrequiresthatcliniciansnotonlypresenttheoptionsclearlybutthattheyalsobeattentivetopatients’emotionalneeds.Patientsareill,caregiversareexhausted,andtheremaybeatremendousamountoffear,anxiety,stress,andperceivedlossofcontrol.137Neuropsy-chologicalstudieshaveshownthatwhenpeopleareemotion-allyreactive,cognitiveinformationisnotprocessedaccu-rately.130,133Onesmallstudyoffamilymembersofpatientsintheintensivecareunitshowedarelationshipbetweencom-municationstylesandratesofanxietyincaregivers.138Attendingtopatients’emotionsmayimprovetheirabilitytoprocesscognitivedataandmakebetterdecisions.Inaddition,respondingempatheticallyhasbeenshowtostrengthenthepatient-clinicianrelationship,increasepatientsatisfaction,andmakepatientsmorelikelytodisclosefutureworries.139Thefirstelementofdevelopinganemotionallanguageforconversationsistorecognizethatpatientsarehavinganemotionalreactiontothenewsthatisbeingdeliveredandthenlearningtoaddresstheemotionalcontentoftheconver-sation.Inonestudyofcommunicationwithfamilymembersofpatientsdyinginanintensivecareunit,cliniciansmissedopportunitiestorespondtotheemotionalcontentoftheconversationin29%oftheconversations.140Althoughattimes,patients’emotionalreactionsmaybeclear(especiallywhentheyusewordssuchas“scared”or“angry”),atother
LVADindicatesleftventricularassistdevice.
ReprintedfromBacketal,113withpermissionofthepublisher.Copyright©2005,Wiley&Sons.
timestheexactemotionalcontentofthediscussionmaybemoreveiled,suchaswhenapatientorfamilysays,“Idon’tknowifIcanhandlethisanymore.”Ifpatientsorfamilieskeepraisingthesameissuerepeatedlyduringameeting,itmayindicatethattheyarehavingareactiontoanissuethatissostrongthatitinterfereswiththeirabilitytoprocessinformation.Forexample,whenpatientsaskaquestionsuchas,“Howdidthishappen?”itmayoftenbeacluethatthereisanemotionalcomponenttotheinformationandthatwhatisneededisaqueryaboutthepatient’semotionsandnotacognitiveresponseexplainingthecauseofadiseaseoracomplication.Addressingthereactionofpatientsandtheirfamiliestoseriousillnessisametricthathasbeenproposedtomeasurethequalityofpalliativecareprograms.93Oncetheclinicianhasrecognizedthatthereisanemotionalcomponenttothepatient’sorfamily’sreaction,thenextessentialskillistorespondtoit.Althoughtherearedatademonstratingthataslittleas40secondsofempatheticcommentsinconversationscanimprovepatientandfamilyoutcomesrelatedtocommunication,cliniciansoftenneedassistanceinfindingtherightwordstoexpresstheirempathyforpatientsinthecourseofthesecomplexconversa-tions.141,142Oneusefulmnemonicdevicethatcanhelpclini-ciansrespondempatheticallyinconversationsisthemne-monicN-U-R-S-E.141AsexplainedinTable8,NURSEstandsforNamingtheemotionexpressedintheconversation,demonstratingUnderstandingoftheemotion,Respectingtheemotiondisplayedbythepatientorfamily,Supportingthepatient/family,andExploringtheemotioninthecontextofthediscussion.Thisassistscliniciansindemonstratingverbalempathyandensuresthatthecomplexemotionalcomponentsoftheconversationareaddressed.Morecomprehensivereviewsregardingtheimportanceofacknowledgingpatientandfamilyemotionshavebeenpublished.143,144Downloaded from http://circ.ahajournals.org/ by guest on March 12, 2012
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Limitationsinhealthliteracyandnumeracyfurtherinter-ferewithunderstandingandintegrationoftheinformationdiscussedasitrelatestodecisionmaking.Healthliteracyisthedegreetowhichpeoplehavethecapacitytoobtain,process,andunderstandthebasichealthinformationandservicesneededtomakeappropriatehealthdecisions.159Nearly10%ofthepopulationisfunctioningatbelowbasicliteracylevels.160Thosemostlikelytobeinthebelowbasiclevelhadlessthanahighschooleducation,spokenoEnglishbeforestartingschool,orwereHispanic,black,Ն65yearsofage,orhadmultipledisabilities.Only12%oftheUSpopulationhadtheskillsneededtomanagetheirownhealthcareproficiently.161Notsurprisingly,lowhealthliteracyisassociatedwithpoorself-care162–164andincreasedmortalityinolderadultswithchronicillnessessuchasheartfailure.165–167Tooffsetthesepooroutcomes,arecentscientificstatementfromtheHeartFailureSocietyofAmericaspecifiesthatcliniciansmustrecognizetheconsequencesoflowhealthliteracy,screenpatientsatrisk,documentliteracylevelsandlearningpreferences,andintegrateintopracticeeffectivestrategiestoenhancepatients’understanding.168Furthermore,com-municatingnumericriskinagraphicformhasalsobeenshowntoimprovecomprehensionamongpatientswithdifficultiesinliteracyandnumeracy132(“PatientDecisionAids”athttp://decisionaid.ohri.ca/169forexamples).FamilyDynamics
Familydynamicscanbeabarriertonegotiatinggoalsofcare.Arecentsurveyofelders(meanage83years)andtheiradultchildren(meanage53years)revealedthatalthoughmostfamilyunitshaddiscussedend-of-lifepreferences,importantbarrierstosuchdiscussionsincludedfearofdeath,trustinotherstomakedecisions,familydynamics,anduncertaintyaboutpreferences.170Thosefactorsthatfacilitatedthediscus-sionwereacceptanceoftherealityofdeath,priorexperiencewithdeath,religionorspirituality,andadesiretohelpthefamily.Inaddition,therearesignificantpsychologicalbur-densassociatedwithsurrogatedecisionmaking.170Interest-ingly,previousdiscussionwiththeirlovedoneaboutgoalsappearedtomitigatetheseburdens,providinganadditionalreasontoraisetheseissueswithboththepatientandfamilyearlyinthecourseoftheillness.
CultureandReligion
Culturalandreligiousdifferencesinpatientpreferencesareknowntoexist.171Awarenessofculturalandreligiousdiffer-encescanfacilitateunderstandingofpatientchoiceswhendiscussingtreatmentoptions,especiallywhenpatientsdeclineevidence-basedtherapiesthathealthcareprofessionalsper-ceiveasofferingmorebenefitthanrisk.Althoughcliniciansarenotexpectedtobeexpertsinculturalorreligiousissuesrelatingtodecisionmaking,itisimportantthattheybeawareoftheinfluenceoftheseelementsondecisionmaking.Conversely,cliniciansshouldalsobewarnedagainstmakingassumptionsaboutpatientpreferencesbasedonperceivedculturalorreligiousexpectations.Cliniciansshouldspeakcandidlywithpatientsusingthestrategiesrecommended.Referraltopalliativecare,chaplaincy,orsocialworkservices
DepressionandAnxiety
Depressionandanxietyarecommoninpatientswithheartfailure,withprevalenceratesrangingfrom13%to77%andfrom50%to70%,respectively.145–147Furthermore,preva-lenceratesfordepressionarealmost4-foldhigherinpatientswithNewYorkHeartAssociationfunctionalclassIVversusclassIheartfailureandalsovarybyself-reportedsymptomseverityandhealthstatus.148Theseindicatorsofmentalhealthstatusmayaffectthedecision-makingprocess.Depres-sionisassociatedwithimpairedcognitionandsocaninter-ferewithprocessingofinformation,memory,andexecutivefunction,whichcanaffectdecisionmaking,especiallyinolderadults.149–151Anxiety,asnotedabove,canalterpro-cessingofinformationbecauseofemotionalreactivity.Thus,inpatientswithadvancedheartfailure,thesebarrierstodecisionmakingneedtobeidentifiedandaddressedtoenhancediscussionsabouttherapeuticoptions.Screeningfordepressionandanxiety,followedbypharmacologicalandnonpharmacologicalinterventions(includingpsychologicaland/orpsychiatricconsultation),maybeappropriate.LimitationsofCognition,Literacy,andNumeracy
Currentevidencesuggeststhatingeneral,patientshaveapoorunderstandingoftheirmedicalinterventionsandthattheirpreferencesarenotdrivingdecisions.7Asurveyof3010adultsrevealedthatpeoplewererelativelyunawareoftherisksof9commonmedicalconditions.Forexample,ofpatientstakingacholesterolmedication,38%didnotknowthatthetreatmentwaslifelong,and83%couldnotcorrectlyidentifythemostcommonsideeffect(musclepain).152InthecaseofICDs,morethanhalfofpatientsoverratedthebenefitsofICDtherapyby500%,thinkingthatϾ50of100liveswouldbesavedbytheICDtherapyoverthenext5years(theactualestimateiscloserto5–10per100).153Inthecaseofelectivepercutaneouscoronaryintervention,patientssignifi-cantlyoverestimatedthebenefits;onestudydemonstratedthat88%ofpatientsbelievedthatpercutaneouscoronaryinterventionwouldreducethechanceofarecurrentmyocar-dialinfarctionand82%believedthatitwouldreducemor-tality,154despiteclinicaltrialdatathatelectivepercutaneouscoronaryinterventionhasnoeffectonrecurrentmyocardialinfarctionormortality.155Anotherstudydemonstratedthatfewerthanhalfofthepatientscouldrecallatleast1complicationofpercutaneouscoronaryinterventiondespitethefactthatmostofthemexpressedastronginterestinparticipatingindecisionmaking.Together,thesedatasuggestaneedforimprovementinthedecision-makingprocess.156Cognitiveimpairmentscompounddifficultieswithcom-munication,comprehension,anddecisionmaking.Mildcog-nitivedeclineisseenin25%to50%ofadultswithheartfailure.157Arecentcomparisonofheartfailurepatients,healthyparticipants,andmedicalpatientsdemonstratedthatheartfailurepatientshadpoorermemory,psychomotorspeed,andexecutivefunctionthantheotherparticipantgroups.158AlmostonequarteroftheheartfailurepatientshaddeficitsinՆ3domainsofneuropsychologicalfunctioning.Thosepatientsmostlikelytoexperiencecognitivedeclinewerethosewiththeworstheartfailureseverity.
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Allenetal
mayhelprevealexistingreligiousandculturaldifferencesastheyrelatetothedecision-makingprocess.
LanguageDifferences
AccordingtotheUSCensusBureau,thepopulationspeakingalanguageotherthanEnglishathomehasincreasedsteadilyforthepast3decades.172Thenumberoflanguagesanddialectsspokenacrossthecountrypresentsmajorchallengestocliniciansseekingtohaveameaningfulconversationabouttherapeuticoptionsandend-of-lifeissues.EvenamongthosepatientswhohavelearnedEnglish,whenEnglishisthesecondlanguage,thesubtletiesandnuancesofadiscussionmaybemissed.Interpretersareoftenneeded,whichcanbechallengingintermsoffindingsomeonelinguisticallycapable,available,andsufficientlysensitivetocommunicateboththecontentandthetone.173Often,cliniciansrelyonfamilymemberstointerpretforthem,butfamilymembershavetheirownneedsandemotionssurroundingtheseconversations,whichmakestheiruseasinterpreterspotentiallyproblematic.174Time
Oneofthelargestbarrierstotheseconversationsisthetime-intensivenatureoftheseconversations,coupledwiththetimeconstraintsfacedbybothpatientsandcliniciansinabusymedicalsetting.Currently,clinicianscanbillsolelyonthebasisoftimewhenϾ50%oftheencounter(inpatientoroutpatient)isspentoncounselingthepatient/familiesorcoordinatingcare.Recenteffortsaimedatmakingiteasierforproviderstobereimbursedforconversationsaboutgoalsettingwereultimatelyabandonedforavarietyofreasons.175Becauseofthecomplexityoftheseconversations,however,realignmentofincentivestoencourageproviderstohavetheseconversationsandimprovetheirskillsfordoingsoisnecessaryandvital.
ResolvingConflict
Insomecases,aninterventiondesiredbyapatientmayappeardiscordantwiththepatient’sstatedgoalsand/ormedicalrealities,andcliniciansmustexplainwhyitisnotwarranted.Thisisparticularlydifficultinournationalcultureofentitlementanddenialofmorbidityandmortality.Clini-ciansmustworkwithpatientsandtheirfamiliestoexplainwhyaparticulartreatmentisinconsistentwiththeoverallgoalsofcare,usingpatients’preferencesasarubricforwhythetreatmentisnotappropriate.Thesediscussionscanbeemotionallychargedandadversarialandmayrequireconsid-erabletime.Givenboththecomplexitiesoftheseconversa-tionsandtheirconsiderablelength,formalinvolvementofpalliativecareteamshasbeenshowntoimprovepatientandcaregiversatisfaction,effectivelycontrolsymptoms,anddecreasecostsforpatientswithadvanceddisease.176–179Thereare3keyelementsthatcharacterizediscussionsaboutnotprovidingatherapy.First,theemphasisoftheconversationshouldbeonwhattreatmentswillstillbeprovidedthatwillhelpaccomplishthepatient’sgoals.Thisensuresthepatientdoesnotfeelabandoned.Second,oneshouldattendtotheemotionbehindtherequest.Forexample,“IwishIcouldtellyouthatdoing[specifictreatment]willaccomplishthegoalsthatyouhaveoutlined,butI’msorrytohavetosaythatitwillnot.”Ingeneral,the“Iwish”statement
DecisionMakinginAdvancedHeartFailure17
canbebeneficialintermsofacknowledgingtheemotionalimpactonpatientsofnolongerhavingoptionsforvarioustherapies(ie,“Iwishthingsweredifferent”).Third,some-timesthepatientorfamilyhaseithermisheardormisinter-pretedthedatathatwaspresented,soitmaybehelpfultoclarifywhatfurtherinformationisneededtoreconcileanyinconsistencies(eg,“TellmemoreabouthowyouthinkCPRwouldhelpyou”).Byaskingpatientstoclarifytheirreason-ing,thecliniciancanmoreeffectivelyaddressmisunderstand-ingsandinconsistencies.Inthismanner,theclinicianattendstotheemotionstobetterunderstandwhatisbehindtherequestandthenusestheNURSEstrategytoacknowledgetheemotion,ratherthancreatingconflictwithpatientsandtheirfamiliesaboutthetreatmentitself.
DecisionSupporttoAssistWithParticularlyDifficultConversations
Inmanycases,thedecisionathandmaybeparticularlycomplexormayrequireassistivemethodstohelppatientsandcaregiversunderstandthepotentialoutcomesandrisks.Inthesecases,adecisionsupportintervention,suchasadecisionaidoradecisioncoach,canhelpenhanceconversa-tionsbetweenpatientsandclinicians.
“Decisionaids”aretoolsthathelppatientsandcaregiversbecomeinvolvedindecisionmakingbyprovidinginforma-tionabouttheoptionsandoutcomesandbyassistingpatientsinclarifyingtheirpersonalvalues.10,180Decisionaidscomeinvariousforms,includingbooklets,pamphlets,videos,andWeb-basedsystems,169andaredesignedtocomplement,notreplace,aclinicalencounter.Theycanbeconceptualizedbroadlyaseitheraidstoassistthepatientduringorindepen-dentoftheface-to-faceencounter.10Akeydifferencebe-tweendecisionaidsandasimpleinformationpamphletisthatdecisionaidsdonotsimplyprovidedataabouttheanticipatedrisksandbenefitsbutalsoprovideguidancetohelppatientsclarifytheirpersonalvaluesandmakeadecision.181Decisionaidscanalsohelppatientsclarifytheirvaluesthroughasimpleprosandconslistoran“imaginedfuture”exercise.182Decisionaidsattempttopresentprobabilitiesoftherisksandbenefitsinwaysthatpatientscanunderstand.Infact,recentinnovationshaveincludedthecalculationandpresentationofpatient-specificoutcomesgeneratedfrommultivariablemod-els(suchasthoselistedinTable3,amongothers),inroutineclinicalcare.Inthesettingofinformedconsentforangio-plasty,suchatoolwasdemonstratedtoimprovepatients’understandingoftherisksoftreatment,decreaseanxiety,andimprovesatisfaction.183Asnewmodelsarecreatedthatestimateabroaderrangeofoutcomesthatareimportanttopatients,thisconceptcanbefurtherdeveloped,tested,andappliedinadvancedheartfailure.ACochranereviewof55randomizedtrialsofpatientdecisionaidsdemonstratedthatdecisionaidsimprovedpatientknowledge,reduceddeci-sionalconflict,increasedpatients’participationindecisionmaking,andreducedthenumberofpeopleremainingunde-cidedwithnoassociatedadversehealthoutcomes.184How-ever,only1trialinthisCochranereviewwasrelatedtoischemicheartdisease,andnonewererelatedtoheartfailure.Thefactthatsubstantialevidencesuggeststhatdecisionaidshelppatientsmakebetterdecisionscombinedwiththefact
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18CirculationApril17,2012
assumetheprimaryresponsibilityforadvancingsharedde-cisionmakingandpromotingpatient-centeredcare.
Assuch,theroutineconductoftheseactivitiesmustbeefficientlyintegratedintoroutinecare.Themorecliniciansperformshareddecisionmaking,thebettertheywillbeatmakingitanaturalpartoftheirroutinepracticeofcare.Patientsandfamiliescouldbepreparedforimportantdiscus-sionsbeforetheclinicvisitthroughavarietyofpossiblemechanisms,facilitatingbetteruseoftimeforthebusyclinician.Furthermore,palliativecareservicesareaninstru-mentalresourceinhelpingwiththemorecomplexdecisionsandmajormilestonesthatariseinthecourseofadvancedheartfailurecare.Multidisciplinaryteam-basedcareisnec-essary.Guidelinesforthemostdramatictherapeuticoptions,forinstance,transplantationandmechanicalcirculatorysup-port,alreadyrecognizetheneedforcoordinatedinterdisci-plinarycare.85,87Onlythroughdiverseinclusionofhealthcareproviders—nurses,nursepractitioners,physicianassistants,primarycarephysicians,medicalethicists,chaplains,socialworkers,andothers—canthisshiftadequatelytakeplace.Aculturalchange,particularlywithincardiologybutalsomorebroadly,isnecessary.
However,increasedefficiencyanddedicationonthepartofhealthcareproviderscanonlypartiallyaddresstheneedforqualitydecisionmaking.Ultimately,theUShealthcaresys-temprimarilyreimbursescliniciansfordoingthings,notfordecidingwhichthingsshouldandshouldnotbedone;bothactivitiesaretimeconsumingandinvolvetheexpertiseofaskilledclinician,yetonlyoneisvaluedfinancially.Forahealthcaresystemthathasbeencriticizedforoverutilization,placingagreateremphasisontheshareddecision-makingprocessislikelytoserveasacorrectiveforcetoachievegreatervaluefromthesystem.187Astartwouldbetoreimbursecliniciansmoreequitablyforconductingacom-prehensiveannualheartfailurereview,whichwouldincludevoluntaryadvancedcareplanning.60(p73406)Unfortunately,attemptstospecificallyreimbursecliniciansforthesetypesofactivitieshavemetresistanceforavarietyofreasons.175Untilthesepolicydifferencescanbereconciled,actionslikethosebytheInstituteofMedicinetomakeshareddecisionmaking1ofthepillarsofqualitycareequatetoanunfundedmandateincliniciantimeandenergy.
thatpatientswithheartfailurefaceamultitudeofcompli-cateddecisionsindicatesthatthisisanareainneedofsignificantdevelopmentandresearch.Theworkondevelop-ingdecisionaidsshouldbeginwiththehigher-stakesdeci-sions,includinguseofICDs,inotropes,LVADs,andtransplantation.
Analternativemodeltodecisionaidsisthe“decisioncoach,”atrainedprofessional,oftenanurse,whoassistspatientsinmakingmedicaldecisionsbyhelpingthemprepareforaconsultationandbyempoweringthemtoaskquestionsoftheirprovider.185Earlyresearchsuggeststhatcoachinginterventionsmayhavemodesteffectsonknowledgeandparticipationindecisionmaking.186TheOttawaDecisionSupportGuideisavailablefordownloadandcanbeusedfordecisioncoaching(http://decisionaid.ohri.ca/decguide.html).169Althoughtheuseofcoacheshasnotbeenstudiedinpatientswithadvancedheartfailure,nursesandotherprovidersworkingwithheartfailurepatientscouldbetrainedindecisioncoachingtechniques.
DirectionsfortheFuture
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Changesinorganizationalandreimbursementstructurewillbenecessarytorewardandintegratedecisionmakingintothedeliveryofpatient-centeredhealthcare.
Mechanismsforstandardizing,integrating,anddistributingtheworkofshareddecisionmakingamongthehealthcareteamshouldbedevelopedandevaluated.
Researchtobetterdefinecomparativefunctionalandquality-of-lifeoutcomesforthemajortherapiesisvitaltotrulyinformandaligndecisionmakingwithpatientgoals.Caregiverburdensandexpectationsshouldbeassessedforalltherapiesandincludedascomponentsofdecisionmaking.
Contentandformofdecisionaidsshouldreflectcontem-poraryoutcomesdataandinteractivetechnology.
Skillsetsforcommunicationandshareddecisionmakingshouldbecomepartofstandardcurriculumandtrainingforproviders.
Futureresearchisneededinavarietyofareasrelatedtoshareddecisionmaking,includingeffectivecommunica-tiontraining,decisionsupportinterventions,groupvisits,health-relatedquality-of-lifemeasures,andcaregiverbur-den,needs,andoutcomes.
TrainingProgramstoImproveCommunicationWithPatientsWithHeartFailure
Skillsrequiredtosupportpatientsindecisionmakingarenotadequatelytaughtintrainingprograms.129Multiplestudieshaveshownvariationanddeficienciesintheabilityofclinicianstocommunicatewithpatientsandaddressend-of-lifeissues.188–190Giventheimportantyetdifficulttaskofcommunicationinclinicalpractice,improvingcommunica-tionshouldbeacoreelementofthe“performance-based”trainingandcertificationprocessesadoptedbytheAccredi-tationCouncilforGraduateMedicalEducation.Therecentestablishmentofthesecondarysubspecialtyofadvancedheartfailureandtransplantcardiology191bytheAmericanBoardofMedicalSpecialtiesisanopportunitytoformallyaddcommunicationtechniquesandshareddecisionmakingtothetrainingandcertificationprocessforphysiciansdedi-
NeedforStructuralandReimbursementChangestoEmphasizeSharedDecisionMaking
Manybusycliniciansmaydismisstheaboverecommenda-tionsasimpracticalgiventheconsiderabletimeneededtocompletethedetailedcommunicationprocessesoutlinedabove.Thediversetasksofphysicians,nursepractitioners,andphysicianassistantsinvolvedinprimarycare,generalcardiology,andadvancedheartfailuremanagementlimitthecapacitytoconductthoroughprognostication,communica-tion,andshareddecisionmakingforthevariouspatient-centeredoutcomes,diversepatientandfamilypreferences,andarrayoftreatmentoptionsavailabletothesecomplexpatients.Yet,theuniqueroleofcliniciansdemandsthatthey
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Allenetal
catingtheircareertothecareofthesepatients.Similartrainingisespeciallyimportantforgeneralinternistsandadvancepracticenurseswhowillbecaringforalargenumberofpatientswithadvancedheartfailure.Requirementsforinstitutionalcertification,suchasTheJointCommission’sAdvancedCertificationinHeartFailureprogram,192offeryetanotheropportunitytoemphasizeformalprocessesthaten-hanceshareddecisionmaking.
Severalinterventionshavesuccessfullyimprovedcommu-nicationskillsforclinicians,particularlywithregardtoend-of-lifecare.StudiesontheEducationforPalliativeandEnd-of-LifeCareProject,astandardizedmulticomponentcurriculumwithanemphasisonimprovingcommunication,demonstratedanimprovedphysicianknowledgebaseandconfidenceincaringforpatientsattheendoflife.193,194Likewise,workwithoncologistsfoundthataprogramthatcombinedtraining,roleplay,andindividualizedfeedbackimprovedparticipants’communicationpatterns,outcomes,andtransitionsacrosshealthcaresettings.195,196Somenursing-centeredinterventionshavebeenshowntobesuc-cessfulinchangingnursingpracticeandimprovingoutcomesforpatients.TheEnd-of-LifeNursingEducationConsortium(ELNEC)programusesatrain-the-trainermodel,wherebynurseswhocompletetheprogramareconsideredtrainerswhothengobacktotheirhomeinstitutionsandteachothernursesthecorecontentaimedatimprovingcareforpatientswithadvanceddiseases.Acrossthecountry,morethan4500nurseshavebeenenrolledinELNEC,197anddatafromELNEChaveshownthattheprogramimprovednursingattitudesandknowledgeaboutend-of-lifecare.198Thesuccessfulprogramstoimprovecommunicationskillsinend-of-lifecareprovideatemplateforcomprehensive“communication”trainingofheartfailurecliniciansandneedtobeexpandedtothegeneralphysicianandmidlevelpro-vidercommunity.Additionally,mentoringtraineesinpatientandfamilymeetingscanhelptoensurethatclinicianshaveobtainedthenecessaryskillstoeffectivelycommunicatewithheartfailurepatientsandtheirfamilies.
DecisionMakinginAdvancedHeartFailure19
quality,definedas“theextenttowhichtheimplementeddecisionreflectstheconsideredpreferencesofawell-informedpatient,”200isemergingasanotherpossiblemeasuretoassessthequalityofdecisionmaking,butvalidatedmeasurestoquantifydecisionalqualityareintheearlydevelopmentalstages.200Anidealmetrictomeasuredecisionqualitywouldincludedomainsinknowledgeandvaluesandawaytomeasurevalue-treatmentconcordance.Despitelingeringquestions,decisionqualitymeasurementisgainingpopularity,andsomehaveproposedthatmeasuresofdecisionqualitybeincludedaspartofthelargerpay-for-performanceagenda.187ThePatientProtectionandAffordabilityCareActcallsfor“thedevelopmentofqualitymeasuresthatallowforassessmentoftheexperience,quality,anduseofinformationprovidedtoandusedbypatients,caregivers,andauthorizedrepresentatives.”13Theroleofpalliativecareinpatientswithadvancedheartfailurehasbeenfarlessdevelopedthanincancer,201andfurtherworktodocumentthesynergisticeffectofaddingpalliativecaretotheclinicalcareofpatientswithadvancedheartfailureisneeded.Ourunderstandingofhealth-relatedqualityoflife—“thefunctionaleffectofanillnessanditsconsequenttherapyonapatient,asperceivedbythepa-tient”38—forpatientswithadvancedheartdiseaseislimitedaswell.202Althoughhealth-relatedquality-of-lifemeasure-mentshavebeendevelopedforpatientswithsymptomaticheartfailure,203,204questionsremainabouttheirsensitivityinveryadvancedstagesofdisease.Therehasbeensomeinterestindevelopingself-reportinstrumentstoassessqualityoflifeattheendoflife,buttheyhavenotbeenthoroughlytestedandvalidated.205Primarily,therehasbeenrelativelyslowuptakeofhealth-relatedquality-of-lifeinstrumentsintheevaluationoftherapiesandintheroutinecareofpatients.Ourunderstandingoftheburdenandqualityoflifeofcaregiversofheartfailurepatientsisevenmorelimited,asisknowledgeabouthowbesttointervenetomaximizecaregiverqualityoflife.
FutureResearchDirectionstoImprove
CommunicationWithPatientsWithHeartFailure
Methodsforeducatingcliniciansregardingcommunicationandshareddecisionmakingremainearlyintheirdevelop-ment.Usefuldecisionaidsforcommonlyencounteredmed-icaldecisionsinheartfailurearealsolargelyunderdevelopedorunavailable.OnecompanyhasdevelopeddecisionaidsforpatientsconsideringICDandCRTtherapy(http://www.healthwise.org),198aandanotherhasdevelopedagen-eraldecisionaidforpatientswithheartfailure(http://www.informedmedicaldecisions.org),198bbutthesehavenotbeenstudiedformallyinreal-worldsettings.SeveralrecentlyfundedNationalInstitutesofHealthgrantsaredesignedtodevelopandevaluatedecisionaidsamongpatientswithheartfailure,withtherecognitionthattheresultsofthisworkareseveralyearsaway.
Atamorebasiclevel,ourunderstandingofhowpatientswithadvancedheartfailuremakechoicesislimited.Thereisalsonoconsensusintheliteratureonthebestwaytomeasurewhetheramedicaldecisionwasa“good”one.199Decisional
Conclusions
Theimportanceofshareddecisionmakinginadvancedheartfailurecannotbeoverstatedgiventhecomplexmyriadoftreatmentoptionsthatconfrontpatients,fami-lies,andcaregivers.Wehaveofferedaroadmapforwhenandhowtohaveconversationswithpatientstosupportshareddecisionmaking.Thisprocessmustoccurinthecontextofuncertaintiesinprognosis,multipleandoftencompetingoutcomes,andbarrierstocommunication.Al-thoughthepromotionofshareddecisionmakingmayseemdauntingtobusypracticingclinicians,wehaveattemptedtoprovideguidingprinciplesandsimpletoolsthatcanhelpsetfutureexpectations,anticipatemajordecisions,andpromoteproductiveconversations.Ourstatementisa“calltoaction,”notonlytoclinicianswithinourcommunitydirectlyresponsibleforfacilitatingshareddecisionmakingbutalsotothoseonanationallevelwhowouldreformandrestructurethehealthcaremedicalsystemtotrulysupportpatient-centeredcare.
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20CirculationApril17,2012
Disclosures
WritingGroupDisclosures
WritingGroupMemberLarryA.Allen
Employment
UniversityofColoradoDenver
ResearchGrantAHA†;NHLBI†
OtherResearchSupport
None
Speakers’Bureau/Honoraria
None
ExpertWitnessNone
OwnershipInterestNone
Consultant/AdvisoryBoardAmgen*;RobertWoodJohnsonFoundation*;Johnson&Johnson*
HeartFailureConsultants*NoneNoneNone
Amgen*;BGMedicine*;Novartis†;RocheDiagnostics*;Trevena*
Novartis†NoneBioControlMedical†;BTG*;Cardiokine*;EvaHeart*;OtsukaPharmaceuticals*
None
OtherNone
KathleenGradyLynneW.StevensonRobertM.ArnoldNancyR.CookG.MichaelFelker
NorthwesternUniversityBrighamandWomen’s
HospitalUniversityofPittsburghBrighamandWomen’s
HospitalDukeUniversity
NIH*Medtronic*;NHLBI†
NoneNone
BGMedicine*;CriticalDiagnostics*;NHLBI*;RocheDiagnostics*
NoneNoneNone
NoneNoneNoneNoneNone
NoneMedtronic*NoneNoneNone
NoneNoneNoneNoneNone
NoneNoneNoneNoneNone
NoneNoneNoneNoneNone
GaryS.FrancisNathanE.GoldsteinPaulJ.Hauptman
UniversityofMinnesotaMountSinaiSchoolof
MedicineSaintLouisUniversity
NoneNoneNone
NoneNone
GlaxoSmithKline*;Otsuka
Pharmaceuticals*
NoneNoneNone
NoneNoneNone
NoneNoneNone
EdwardP.Havranek
DenverHealthandHospitalAuthority/UniversityofColoradoSchoolofMedicine
YaleUniversityColumbiaUniversityUniversityofColoradoDenver
NHLBI†NoneNoneNoneNoneNone
HarlanM.KrumholzDonnaManciniDanielD.Matlock
Medtronic,Inc.†
NoneFoundationforInformedMedicalDecisionMaking†
NIH†ACCF†;AHA†;Amgen†;Bristol-MyersSquibb/Sanofi†;EvaHeart†;EliLilly†;
NHLBI†
NoneNoneNone
NoneNoneNone
NoneNoneNone
NoneNoneNone
UnitedHealth†
NoneNone
NoneNoneNone
BarbaraRiegelJohnA.Spertus
UniversityofPennsylvaniaUniversityofMissouri,
KansasCity
KynettFoundation*
None
NoneNone
NoneNone
NoneHealthOutcomesSciences†
NoneAmgen*;StJudeMedical*;UnitedHealthCare*
NoneKCCQCopyright†
ThistablerepresentstherelationshipsofwritinggroupmembersthatmaybeperceivedasactualorreasonablyperceivedconflictsofinterestasreportedontheDisclosureQuestionnaire,whichallmembersofthewritinggrouparerequiredtocompleteandsubmit.Arelationshipisconsideredtobe“significant”if(1)thepersonreceives$10000ormoreduringany12-monthperiod,or5%ormoreoftheperson’sgrossincome;or(2)thepersonowns5%ormoreofthevotingstockorshareoftheentity,orowns$10000ormoreofthefairmarketvalueoftheentity.Arelationshipisconsideredtobe“modest”ifitislessthan“significant”undertheprecedingdefinition.*Modest.†Significant.
ReviewerDisclosures
ResearchGrantNoneNoneNoneNoneNoneNoneNoneNone
OtherResearchSupportNoneNoneNoneNoneNoneNoneNoneNone
Speakers’Bureau/HonorariaNoneNoneNoneNoneNoneNoneNoneNone
ExpertWitnessNoneNoneNoneNoneNoneNoneNoneNone
OwnershipInterestNoneNoneNoneNoneNoneNoneNoneNone
Consultant/AdvisoryBoardNoneNoneNoneNoneNoneNoneNoneNone
ReviewerRebeccaBoxerHarleahBuckGreggFonarowJessieGrumanMichaelStanleyKiernanSusanPresslerWinifredTeutebergAngeloVolandes
Employment
CaseWesternReserveUniversityPennsylvaniaStateUniversityUniversityofCaliforniaLosAngelesCenterforAdvancingHealthTuftsMedicalCenterUniversityofMichiganUniversityofPittsburghHarvardMedicalSchool
OtherNoneNoneNoneNoneNoneNoneNoneNousFoundation,
Inc.*
ThistablerepresentstherelationshipsofreviewersthatmaybeperceivedasactualorreasonablyperceivedconflictsofinterestasreportedontheDisclosureQuestionnaire,whichallreviewersarerequiredtocompleteandsubmit.Arelationshipisconsideredtobe“significant”if(1)thepersonreceives$10000ormoreduringany12-monthperiod,or5%ormoreoftheperson’sgrossincome;or(2)thepersonowns5%ormoreofthevotingstockorshareoftheentity,orowns$10000ormoreofthefairmarketvalueoftheentity.Arelationshipisconsideredtobe“modest”ifitislessthan“significant”undertheprecedingdefinition.
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AllenetalDecisionMakinginAdvancedHeartFailure21
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ⅢdecisionⅢprognosis
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ExecutiveSummary:DecisionMakinginAdvanced
HeartFailure
AScientificStatementFromtheAmericanHeartAssociation
EndorsedbyHeartFailureSocietyofAmericaandAmericanAssociation
ofHeartFailureNurses
LarryA.Allen,MD,MHS,Co-Chair;LynneW.Stevenson,MD,Co-Chair;KathleenL.Grady,PhD,APN,FAHA,Co-Chair;NathanE.Goldstein,MD;DanielD.Matlock,MD,MPH;RobertM.Arnold,MD;NancyR.Cook,ScD;G.MichaelFelker,MD,MHS;GaryS.Francis,MD,FAHA;PaulJ.Hauptman,MD;EdwardP.Havranek,MD;HarlanM.Krumholz,MD,SM,FAHA;DonnaMancini,MD;
BarbaraRiegel,DNSc,RN,FAHA;JohnA.Spertus,MD,MPH,FAHA;onbehalfoftheAmericanHeartAssociationCouncilonQualityofCareandOutcomesResearch,CouncilonCardiovascularNursing,CouncilonClinicalCardiology,CouncilonCardiovascularRadiologyandIntervention,and
CouncilonCardiovascularSurgeryandAnesthesia
P1-foo
T1
ecisionmakingforadvancedheartfailurehasbecomemorecrucialandmorechallengingastheprevalenceofsymptomaticdiseaseandthecomplexityoftherapeuticoptionshaveincreased.Onceheartfailureadvancesdespiterecom-mendedmedicaltherapies,asmall,highlyselectgroupofpatientsarefacedwithadecisiontoexchangethesyndromeofheartfailureforanadvancedsurgicaltherapy(ie,hearttrans-plantationand/ormechanicalcirculatorysupport)withanen-tirelydifferentsetofbenefits,risks,andburdens.Thevastmajorityofpatientswithadvancedheartfailure,however,arefacedwithday-to-daydecisionsinthecontextofanextendedperiodinwhichincreasingsymptomsadverselyaffecttheirdailylives,aswellasthelivesoftheircaregivers.Shareddecisionmakingasksthatcliniciansandpatientsshareinformationwitheachotherandworktowarddecisionsabouttreatmentthatarealignedwithpatients’values,goals,andpreferencesandarefeasiblegivenexistingmedicalevidence(Table).
Theethicalprincipleofautonomyrecognizestherightsofpatientstochoosetheirtherapiesfromamongreasonableavail-ableoptions.Theformalprocessofinformedconsentincludesnotonlytheproceduraldetailsbutalsocomprehensionofthebenefitsandrisksoftheofferedtherapyandavailablealterna-tives,includingcontinuationandwithdrawalofongoingtreat-ments.Shareddecisionmakingextendsbeyondinformedcon-sent,requiringthatcliniciansandpatientsconsiderinformationtogetherandworktowardconsensus.Shareddecisionmakingthusfollowstheprincipleof“patient-centeredcare,”1ofthe6
D
pillarsofhealthcarequalityidentifiedbytheInstituteofMedi-cine.Theimplicationisthatbeneficialtherapiesandthoserecommendedbyguidelinesshouldbeofferedbutneedtobediscussedasanoptionamongmanystrategies,withattentiongiventohowtheyarealignedwithpatientpreferences.
Anticipationisacentraltenetofshareddecisionmaking,particularlyinthesettingofaprogressiveconditionwithhighratesofmorbidityandearlymortality.Settingexpectationsforthefutureforindividualpatientswithadvancedheartfailurerequiresattentiontotheclinicalcourse,includingmilestonessuchasrecurrenthospitalizationsanddecreasedeffectivenessofchronicmedicalregimens.Markedclinicalfluctuationscharac-terizeheartfailuremorethanotherchronicdiseases,withinevitableuncertaintyinprognosis.Althoughpredictivemodelscantargethigh-riskpopulations,theprobabilityofgreaterthana2-folderrorrateineitherdirectionforasurvivalestimateappliedtoanindividualpatient(suchaspredictingsurvivalofϽ6monthsorϾ2yearsforapatientwhodiesin12months)remainsnear50%underrealisticassumptions.However,thisuncertaintyshouldnotdeterdiscussionswithpatientsandfamiliesbutrathershouldbeacknowledgedasaninherentpartofdecisionsregard-ingfuturecare.
Difficultdiscussionsconductedearlierwillsimplifydifficultdecisionsinthefuture.Weadvocateforanannualheartfailurereviewbetweenpatientsandtheirprimaryclinicians,whichwouldencompassdiscussionofcurrentandpotentialtherapiesforbothanticipatedandunanticipatedevents(includingcardiac
Thefull-textversionisavailableonlineat:http://circ.ahajournals.org/lookup/doi/10.1161/CIR.0b013e31824f2173.
TheAmericanHeartAssociationrequeststhatthefull-textversionofthisdocumentbeusedwhencited:AllenLA,StevensonLW,GradyKL,GoldsteinNE,MatlockDD,ArnoldRM,CookNR,FelkerGM,FrancisGS,HauptmanPJ,HavranekEP,KrumholzHM,ManciniD,RiegelB,SpertusJA;onbehalfoftheAmericanHeartAssociationCouncilonQualityofCareandOutcomesResearch,CouncilonCardiovascularNursing,CouncilonClinicalCardiology,CouncilonCardiovascularRadiologyandIntervention,andCouncilonCardiovascularSurgeryandAnesthesia.Decisionmakinginadvancedheartfailure:ascientificstatementfromtheAmericanHeartAssociation.Circulation.2012;125:●●●–●●●.©2012AmericanHeartAssociation,Inc.Circulationisavailableathttp://circ.ahajournals.org
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2Circulation
TopTenThingstoKnow
Table1.
1.Shareddecisionmakingistheprocessthroughwhichcliniciansandpatientsshareinformationwitheachotherandworktowarddecisionsabouttreatmentchosenfrommedicallyreasonableoptionsthatarealignedwiththepatients’values,goals,andpreferences.
2.Forpatientswithadvancedheartfailure,shareddecisionmakinghasbecomebothmorechallengingandmorecrucialasdurationofdiseaseandtreatmentoptionshaveincreased.
3.Difficultdiscussionsnowwillsimplifydifficultdecisionsinthefuture.4.Ideally,shareddecisionmakingisaniterativeprocessthatevolvesovertimeasapatient’sdiseaseandqualityoflifechange.
5.Attentiontotheclinicaltrajectoryisrequiredtocalibrateexpectationsandguidetimelydecisions,butprognosticuncertaintyisinevitableandshouldbeincludedindiscussionswithpatientsandcaregivers.
6.Anannualheartfailurereviewwithpatientsshouldincludediscussionofcurrentandpotentialtherapiesforbothanticipatedandunanticipatedevents.
7.Discussionsshouldincludeoutcomesbeyondsurvival,includingmajoradverseevents,symptomburden,functionallimitations,lossofindependence,qualityoflife,andobligationsforcaregivers.
8.Astheendoflifeisanticipated,cliniciansshouldtakeresponsibilityforinitiatingthedevelopmentofacomprehensiveplanforend-of-lifecareconsistentwithpatientvalues,preferences,andgoals.
9.Assessingandintegratingemotionalreadinessofthepatientandfamilyisvitaltoeffectivecommunication.
10.Changesinorganizationalandreimbursementstructuresareessential
topromotehigh-qualitydecisionmakinganddeliveryofpatient-centeredhealthcare.
andrespiratoryarrest)withinthecontextofpatientvalues,goals,andpreferences.Inadditiontotheannualreview,amorefocuseddiscussionshouldbetriggeredbymilestonesforreview,suchashospitalizations,defibrillatorshocks,progressivehypo-tensionorrenaldysfunction,significantlyincreasedsymptomburden,andlimitationsinfunctionalcapacityandindependence.Aframeworkfortypesofdecisionsinadvancedheartfailureincludes(1)cardiacinterventionssuchasvalvesurgery,percutaneouscatheterintervention,orcardiacresyn-chronizationtherapythatmayimprovecardiacperformance;(2)implantabledefibrillatorsthatreducetheriskofsuddendeathbutdonotimprovecardiacperformance;(3)temporaryoptionsforacutedecompensationsuchasintravenousinotro-pictherapyorhemodialysisthatmayleadtounanticipateddependence;(4)thesurgicaltherapiesoftransplantationormechanicalcardiacassistdevicesthatexchangediseasesandsetpatientsondifferentlifetrajectories;and(5)noncardiacprocedures,forwhichbenefitsandrisksshouldbereviewedinthecontextofcompetingrisksfromheartfailure.
Discussionsshouldincludearangeofanticipatedout-comes,includingnotonlysurvivalbutalsomajoradverseevents,qualityoflife,symptomburden,functionallimita-tions,lossofindependence,andobligationsforcaregivers.Majorinterventionsshouldbepresentedwithabalanceddescriptionofalternativeapproaches,includingafocusonsymptomatictherapy.Referraltoapalliativecareteamshouldbeconsideredforassistancewithdifficultdecisionmakingandsymptommanagement,evenaspatientscontinuetoreceivedisease-modifyingtherapies.Theuseofpalliativecareservicesshouldnotbeconsideredequivalenttothewithdrawalofdisease-modifyingtherapies.
Planningend-of-lifecareforanticipateddeathisa“timeofaction”;cliniciansshouldtakeresponsibilityforinitiatingthedevelopmentofaplanofcareconsistentwiththepatient’sexpressedvaluesandgoals.Partofthefinalplanofcaremayinvolveconsultingpalliativecareprofessionalsandrecom-mendinghospiceservices,becausetheycanprovideeffectivesymptommanagementforthepatientandsupportforthefamily,mostofteninthehome.
Communicationisessentialtothedecision-makingprocess.Researchhasshownthatmostpatientsandfamilieswantaccurateandhonestconversationswithclinicians;however,thesecomplexconversationsfacemultiplepotentialbarriers.Difficultdecisionsaboutlifeandfamilystimulatepowerfulandcomplexemotionsthatmaypreventprocessingofimportantinformation.Attentiontoinformationalpreferences,learningstyles,healthliteracy,anxietyanddepression,cognitivelimita-tions,culturalandreligiousdifferences,andlanguagebarriersiscriticaltofacilitateinformeddiscussions.Familyandcaregiverdynamics,particularlywithregardtosurrogatedecisionmaking,canfurthercomplicatethegoalofmatchingtherapytopatientvaluesandpreferences.Conflictcanarisewhenaninterventiondesiredbythepatientorfamilyisnotalignedwithmedicalrealitiesorthepatient’sstatedgoals.
Tonavigatethesebarriers,cliniciansmustbehighlyskilledincommunication.Aroadmapforeffectivecommunicationcanfacilitatethesediscussions.Ideally,shareddecisionmakingisaniterativeprocessthatevolvesovertimeasapatient’sdiseaseandqualityoflifechange.Earlyelicitationofvalues,goals,andpreferencesisnecessarytoguidefuturediscussionsofpossibletherapeuticoptionsanddecisionmaking.SpecificskillsandtoolsthatclinicianscanintegrateintotheirpracticeincludetheAsk-Tell-Askformatforcommunicatingdifficultinformation,theN-U-R-S-Emne-monic(Namingtheemotionexpressedintheconversation,demonstratingUnderstandingoftheemotion,Respectingtheemotiondisplayedbythepatientorfamily,Supportingthepatient/family,andExploringtheemotioninthecontextofthediscussion)fordealingwithcomplexemotions,anddecisionaidsforenhancingthecommunicationofdifficultquantitativeinformationandintegrationofpatientvalues,goals,andpreferences.Referraltopalliativecare,chaplaincy,andpsychologicalorsocialworkservicesmayalsohelptoidentifyandovercomethesebarriers.
Futureeffortstoimprovetheprocessofshareddecisionmakingshouldincludeanenhancedresearchfocusonthefullrangeofanticipatedoutcomesforpossibleinterventions,skillstrainingincliniciancommunication,anddevelopmentofdeci-sionsupporttoolsanddecisionqualitymeasures.Althoughcliniciansmustassumetheprimaryresponsibilityforadvancingshareddecisionmakingandpatient-centeredcare,theseeffortswillberestrictedinscopeuntilthehealthcaresystemshiftsitsemphasisfromreimbursingcliniciansforprovidingspecifictherapiestoreimbursingcliniciansforhelpingpatientsdecidewhichstrategiesshouldandshouldnotbepursued;societymustrealignincentivestosupportshareddecisionmakingandacultureofpatient-centeredhealthcare.
AQ:1
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References
Referencesareavailableinthefulltextofthisguideline:http://circ.ahajournals.org/lookup/doi/10.1161/CIR.0b013e31824f2173.
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