idaho survey: personal preferences at end-of-life...the 2018 personal preferences at end-of-life...

IdahoSurvey:PersonalPreferences

atEnd-of-Life

2018

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SURVEYPARTNERS

TheIdahoSurvey:PersonalPreferencesatEnd-of-LifeistheresultofacollaborationbetweenPatient Centered Outcomes Research Institute (PCORI), Pipeline to Proposal award and theCenter for the Study of Aging at Boise State University. Sponsoringmembers of the projectincludedHonoringChoices® Idaho (HCI), Boise StateUniversity SchoolofNursing, theSaintAlphonsusHealthSystemandtheSt.Luke’sHealthSystem.ThePersonalPreferencesatEnd-of-LifesurveywasadaptedfromtheIdahoStatewideEnd-of-lifeSurveyconductedin2006.

Patient-CenteredOutcomesResearchInstitute (PCORI)wasestablishedtofundresearchthatcanhelppatientsandthosewhocareforthemmakebetter-informeddecisionsabouthealthcarechoices,guidedbythosewhowillusethatinformation(www.pcori.org).

TheCenterfortheStudyofAgingestablishedin2004,isamultidisciplinaryresearchandservicecenterlocatedintheCollegeofHealthSciencesatBoiseStateUniversity.TheCenter’smissionisto advance the well-being of older people. The Center for the Study of Aging applies aninterdisciplinary,lifespanapproachtothestudyofagingandservesasaresourceforIdahoandtherestofthenation.

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ACKNOWLEDGEMENTS

TheIdahoSurvey:PersonalPreferencesatEnd-of-LifeisbasedontheIdahoStatewideEnd-of-LifeSurveyconductedin2006.The2006studywasledbyCherylSimpson-Whitaker,MSW,IdahoBetter Way Coalition and Annette Totten, PhD, Center for the Study of Aging, Boise StateUniversity.ItusedaninstrumentpatternedafteratoolthatwasdevelopedbyLife’sEndInstitute:TheMissoulaDemonstrationProject’sCommunitySurvey.Theorganization,content,andformatoftheworkcompletedin2006guidedthedevelopmentofthe2018report.AspecialthankstoSimpson-Whitaker,Totten,andtheirresearchteamforthefoundationofexcellenceprovidedbytheireffort.

The2018surveywasconductedunderthedirectionofKimMartz,RN,PhD,SchoolofNursing,BoiseStateUniversity,SarahToevs,PhD,CenterfortheStudy,BoiseStateUniversity,andLynseyWinters Juel, MPA, Honoring Choices® Idaho, Jannus, Inc. Thanks go to Kirk Ketelsen, PhD,DepartmentofCommunityandEnvironmentalHealth,CollegeofHealthSciencesforstatisticalsupport,graduatestudentMcKenzieHansonforprojectmanagementandresearchassistanceandundergraduatestudentsJenniferStibrany,JulieRekiere,andAnnaliseGoyettefordataentryandothertechnicalassistance.Muchgratitudeandappreciationisalsoextendedtoprojectsponsors,HonoringChoices®Idaho,SaintAlphonsusHealthSystem,St.Luke’sHealthSystem,andBoiseState’sSchoolofNursingandCenterfortheStudyofAging.Thesepartnerscontributedfinancialandin-kindsupporttomakethisworkpossible.Finally, a special thanks to the 827 people living in Idahowho took the time to share theirpreferencesaboutcommunicationandcareatendoflife.ThisinformationwillbeusedtosupportconversationsandguidesystemchangeinIdahoandacrossthecountry.

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CONTENTS

SurveyPartners..................................................................................2

Acknowledgements............................................................................3

Preface...............................................................................................5

Demographics....................................................................................7

KeyFindings.....................................................................................11

CommunicatingWishes....................................................................14

CompassionateCare.........................................................................18

MeaningandSpirituality..................................................................25

WhereDoWeGoFromHere?..........................................................28

AppendixA-TechnicalDescription..................................................33

AppendixB-SurveyandCollateral...................................................37

AppendixC–EOLPreferencesInfographic........................................62

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PREFACE

Assuring that a person’s health care choices are expressed and honored is a catalyst forconversation and change by families, communities, health care organizations, and state andfederal agencies. Conversations and change are underway in Idaho, as evidenced by recentinitiatives leadbyHonoringChoices® Idaho(HCI), twomajor Idaho-basedhealthsystems, theIdahoHealthQualityPlanningCommission,theIdahoDepartmentofHealthandWelfare,andothers. This surveyprojectwill inform those initiatives, the general public andpolicymakersaboutthepersonalpreferencesofIdahoansage35andolderforend-of-lifeconversationsandcare.Thesurveytoolused inthiseffortwasbasedonthe IdahoStatewideEnd-of-LifeSurveyconductedin2006.

The2018Personal Preferences at End-of-Life survey is the result of a collaborationbetweenPatient CenteredOutcomes Research Institute (PCORI) Pipeline to Proposal award, HonoringChoices®Idaho,andtheCenterfortheStudyofAgingatBoiseStateUniversity.In2016,HCIinpartnershipwithBoiseStateUniversityCenter for theStudyofAging, receivedaTier IPCORIPipelinetoProposalaward.Thisawardwasusedtodeveloprelationshipsbetweenolderadults,healthcareprovidersandothercommunitypartnerstobuildasharedunderstandingabouthowclinician–patientcommunicationandplanningaboutend-of-lifecanbeimproved.TheAdvanceCarePlanningCommunityAdvisoryBoardwasestablishedwhichengagedcommunitypartnersin developing research ideas and processes. A Tier II PCORI Pipeline to Proposal award wassecured in 2017 and guided by the Advisory Board and others, to replicate the 2006 IdahoStatewide End-of-Life survey. The goal is to create a current picture of attitudes, beliefs,experiences,andbehaviorsrelatedtoend-of-lifepreferencesandplanningandexaminechangeovertime.ItisthegoaloftheAdvisoryBoard,HCI,andothersthatthesefindingswillbeusedtoguidesystemchangeinIdaho.

Results fromthe2018surveyareconsistentwithmanyof the findings from2006.Foremost,manypeopleinIdahoarewillingtothoughtfullyconsiderawiderangeofissuesrelatedtotheend-of-life.Theyare talking to familyand friendsandsomearespeaking to theirhealthcareproviders,howevermanywouldliketheirproviderstoinitiateconversationswiththemaboutdying and death. While more people in 2018 indicated they knew about health careagents/proxiesandlivingwills,approximatelythesameproportionofindividuals(lessthan50%in2006and2018)hadtakenstepstocompletethisadvanceplanningordocuments.Anotabledifferenceoccurredinthat75%ofrespondentsin2018werecomfortableidentifyingahealthcareagentascomparedto56%in2006.Whilethismayindicateagreaterlevelofawareness,only40%ofrespondentsin2018hadidentifiedahealthcareagentsuggestingthatbarrierstotakingactionexist.

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Therespondentswerealsoveryclearabouttheirwantsanddesiresregardingend-of-life.Over90%wanttodieathome,themajoritydonotwanttobeafinancialorphysicalburdentolovedonesattheendoflife,andmostwouldconsiderusinghospicesupport.

Theauthorsusedthe2006surveyreportasaguide,modifyingthis2018surveyreporttoreflectIdaho-specific programs and resources. Early sections of the report include demographicsfollowed by key findings. Further details from the survey are presented in CommunicatingWishes,CompassionateCare, andMeaning&Spirituality.A call to action ispresented in thesection‘Wheredowegofromhere?’Thetechnicaldetailsonsurveyadministrationprocesses,the survey form distributed to participants, and the complete survey response frequenciesfollowsasAppendices.

This survey report reflects the perceptions of people living in Idaho and attempts to conveysurveyresultsandprovideacontextfortheirinterpretation.Allassertions,conclusions,andanyerrorsareresponsibilityoftheauthorsanddonotnecessarilyreflecttheopinionsofindividualsorsupporters.

KimMartz,PhD,RN SarahToevs,PhD LynseyWintersJuel,MPA AssociateProfessor, Professor,Director HonoringChoices®IdahoSchoolofNursing CenterfortheStudyofAging Jannus,Inc.BoiseStateUniversity BoiseStateUniversity

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DEMOGRAPHICS

WhorespondedtotheIdahoSurvey:PersonalPreferencesatEnd-of-Life?Thissectiondescribesthe peoplewho completed the 12-page survey and compares them to those completing thesurveyin2006.

The2018surveywasdistributedtoarandomsampleof4000adults35yearsandolderwholivedinprivateresidencesinIdaho.ThesamplewascomprisedofequalnumbersofmenandwomenandrepresentedthegeographicdistributionofthepopulationacrossthestateofIdaho.

Ofthe4000surveysmailed,827or21%werereturnedwiththesurveyformcompletedtotallyor inpart.Themajority (91%,n=750)of thesurveyswerereturnedviapostalmailwith theremaindercompletedusingaweb-basedsurveytool.

HOWCLOSELYDOTHEPEOPLEWHOFILLEDOUTTHESURVEYREPRESENTTHEPOPULATIONOF

IDAHO?

ThesurveyrespondentpopulationissimilartoIdaho’spopulationinraceandethnicity,income,educationlevels,employment,andmaritalstatus.Theageandgenderdistributionofthesurveyrespondentsdidnotreflectthepopulation. Apost-stratificationweightingofthesevariableswasconductedduringanalysisoftheresultstomoreaccuratelyreflectthepopulation.DetailsonweightingareincludedinAppendixA.

ISTHERESTATEWIDEREPRESENTATIONINTHESURVEY?

Yes.Peopleacrossthestatereceivedthesurveyandrespondentsliveinallcornersofthestate.Forty-eightpercentofthesurveyrespondentswerefromthewesternpartofthestate,35%fromtheeastand17%fromthenorth.

MARITALSTATUS

FIGURE1.DISTRIBUTIONOFRESPONDENTSBYCOUNTY

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SOMESPECIFICSABOUTRESPONDENTSMARITALSTATUS

Thevastmajorityof respondentsweremarried (71%)while9%weredivorcedand10%werewidowed.Only5%weresingleornevermarriedandanother3%werelivingwithapartner.

EDUCATIONLEVEL

Justoverhalf(55%)oftherespondentsreportedtheydidnothaveacollegedegree.Thirteenpercenthadobtainedahighschooldiplomaortheequivalent,40%hadsomecollegeortechnicaltraining,24%werecollegegraduates,and19%hadaprofessionaldegreeorhavecompletedpost-graduatecoursework.Only2%reportedhavinglessthanahighschooldiploma.

EMPLOYMENT

Half(52%)ofthesurveyrespondentswereemployedinsomecapacity.Thirty-fourpercentofrespondentswereemployedfulltime,45%wereretiredandnotworking,12%wereemployedparttimeand6%notedtheothercategorysuchasahomemaker.Only1%oftherespondentswereunemployedandlookingforwork.

AGE

Approximatelyhalf(49%)ofrespondentswereovertheageof65.Twenty-ninepercentwereage65to74and26%wereinthe55through64agegroup.The54andyoungeragegroupcomprised22%ofthetotalsampleandthose75to84inagewere16%ofthesample.Peopleage85andolderwere4%oftherespondents.

The respondents under-represent younger populations and over-represent the older adultpopulationinIdaho.Basedonthe2010censusi,thedistributionofadultsbetweentheagesof35to44,45to54,and55to64isapproximately24%percategory.Thesewerenotreflectedbythesurvey respondents. Inaddition,a smallerproportionof respondentswereage65 to74(18%)andage75andolder(11%).ThevariableofagewasweightedintheanalysistoproducerepresentativeestimatesofthepopulationparametersofIdaho.

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FIGURE2.AGEDISTRIBUTIONOF2018SURVEYRESPONDENTSCOMPAREDTOIDAHORESIDENTSAGE35ANDOLDER

DIDMENRESPOND?ITSEEMSLIKETHISWOULDBESOMETHINGONLYWOMENWOULDFILLOUT.

Yes.Infact,41%,ofsurveyrespondentsweremaleand57%female.In2010theIdahopopulationdistributionforpeopleage35andolder49%wasmaleand51%wasfemale.iiThevariableofgender was weighted in the analysis to produce representative estimates of the populationparametersofIdaho.

RACEANDETHNICITY

Ninety-fourpercentof thepeoplewho filledout the surveyareWhiteand2%areAmericanIndian or Alaskan Native. One percent of the survey respondents are of Hispanic or Latinoethnicity compared to 6.5% of the Idaho population age 35 and older of Hispanic or Latinoethnicity.iii

INCOME

Themedian income for a family of four (“standard family”) in Idahowas $49,179 in 2016.ivOverall, survey respondents had higher household income compositions than the “standardfamily”. Forty-seven percent had an income level of $60,000 or more; 21% of respondentsreported an income of $40,000 and $59,000 and 18% had an income between $20,000 and$39,000.

7%

16%

26% 29%

16%

4%

23% 23% 23%

16%

8% 8%

0% 5%

10% 15% 20% 25% 30% 35%

35-44 45-54 55-64 65-74 75-84 85andover

AgeDistributionof2018SurveyRespondentsComparedtoIdahoResidentsAge35andOlder

SurveyRespondents Idaho2016

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HEALTHSTATUS

Themajority (83%) of respondents considered themselves to be in good to excellent health.Thirty-sixpercentratedtheirhealthas“verygood,”28%rateditas“good”and19%ratedtheirhealth as “excellent.” Thirteenpercent reportedbeing in “fair health” and3%were in “poorhealth.”

Chronic illness was on the minds of some survey respondents. Twenty-two percent ofrespondentsreportedhavingaseriouschronicillnessthemselvesand18%saidsomeoneelseintheirhouseholdhadachronicillness.

HOWCLOSELYDOTHEPEOPLEWHOFILLEDOUTTHE2018SURVEYMIRRORTHOSEFROM2006?

Thecharacteristicsoftherespondentpopulationscompletingthesurveyinthe2006and2018surveyweresimilarinlevelofeducation,healthstatus,andrace/ethnicityandbyregionofthestate.Moreindividualsovertheageof65andmorefemalesrespondedtothe2018ascomparedtothe2006survey.Therespondentsin2018alsoreportedhigherlevelsofincome.

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KEYFINDINGS

The Idaho Survey: Personal Preferences at End-of-Life was a joint project between PatientCenteredOutcomesResearchInstitute(PCORI),PipelinetoProposalaward,theCenterfortheStudy of Aging at Boise StateUniversity andHonoring Choices® Idaho (HCI). The decision toreplicatethe2006 IdahoStatewideEnd-of-LifeSurveywasguidedby input fromtheAdvanceCarePlanningCommunityAdvisoryBoardestablishedasacomponentofthePCORIaward.TheAdvisoryBoardandothercommunitypartnersidentifiedtheneedforacurrentsnapshotoftheattitudes,beliefs,experiences,andbehaviorsrelatedtoend-of-lifepreferencesandplanningandexaminechangeovertime.ItisthehopeoftheAdvisoryBoard,HCI,andothersthatthefindingswillbeusedtosupportconversationsandguidesystemchangesinIdaho.

ThesurveywasconductedFebruary2018throughApril2018and827peoplerespondedforaresponserateof21%.Aselectionofthefindingsareoutlinedhereandpresentedinmoredetailinthenextsectionsofthisreport.

COMMUNICATINGWISHES

PEOPLEINIDAHOARECOMFORTABLETALKINGABOUTDEATH…

• 50%rememberdeathanddyingbeingtalkedabouteitheroccasionallyoroftenintheirfamilieswhentheywerechildren

• 88%areverycomfortableorsomewhatcomfortabletalkingaboutdeathwithfamily• 84%arecomfortablewithwritingtheirownlivingwillconcerninghealthcaredecisions• 50%areverycomfortablewithappointingahealthcareagentwhowouldactontheirbehalfiftheywere

unabletocommunicate• 73%havespokenwiththeirspouseorpartneraboutadvancedirectivesforcareattheend-of-life• 69%saynotbeingabletocommunicatewishesand/orneedswouldbeworsethandeath

PEOPLEINIDAHOHAVESTRONGPREFERENCESABOUTTHEIROWNEND-OF-LIFECARE

• 93%sayitisimportantorveryimportantthattheyareabletostayintheirownhomewhendealingwiththeirowndying

• 86%sayitissomewhatorveryimportantthattheyarenotonartificiallife-sustainingsupportwhendying• 60%aresomewhatorveryafraidofdyinginaninstitution• 72%areconcernedorveryconcernedtheywillexperienceafinancialburdenpayingformedicineormedical

care• 79%sayitisveryimportanttonotbeaphysicalburdentolovedone• 60%areconcernedtheywillbeafinancialburdentofamilyorfriends• 94%wouldwanttoknowiftheyhadaseriousillness• 95%sayitisimportanttobeabletounderstandtreatmentoptions

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• 97%sayitisimportanttobeabletochoosetreatmentoptions• 59%wanttheirprimarycarephysicianand/orspecialisttoinitiatetheconversation

BUT,OFTENTHEYHAVENOTHADKEYEND-OF-LIFECONVERSATIONS…

• 55%haveNOTcompletedalivingwillorwritteninstructionsconcerninghealthcaredecisions• 60% have NOT identified a health care agent who would act on their behalf if they were unable to

communicate• 86%haveNOTtalkedaboutwishesforcareatend-of-lifewiththeirprimarycarephysicianand/orspecialist• Only16%ofthoseover65,hadtheirhealthcareproviderdiscussAdvanceCarePlanningwiththeminthe

pastyear

THEYREALIZETHEIMPORTANCEOFPAINMANAGEMENTANDPALLIATIVECARE…

• 95%believeitisimportantorsomewhatimportanttobefreefrompain• 98%wantinformationaboutoptionsformanagingpain• 68%believelivingwithgreatpainwouldbeworsethandeath

…BUTTHEYHAVECONCERNS.

• 42%areafraidofbecomingaddicted• 80%saytheywouldtakethelowestamountofmedicinepossibletosavethelargerdoesforlaterwhen

theirpainisworse• 38%areafraidtheywouldbegiventoomuchpainmedicine

THEYKNOWABOUTHOSPICEANDWOULDCONSIDERUSINGTHISTYPEOFSERVICEATTHEEND-OF-LIFE…

• 98%areawareofhospiceservices• 84%wouldusehospicesupportifneeded

…BUTTHEYMAYNEEDMOREDETAILEDINFORMATION.

• 57%areawarethatMedicareandMedicaidpayforhospiceservices• Mostoftheinformationabouthospicecomesfromtalkingwithothers(34%),themedia(20%)orknowing

someonewhousedhospice(72%)• Only19%heardabouthospicefromahealthprofessional

MEANINGANDSPIRITUALITY

IDAHOANSREPORTEDTHEIRVALUESANDMEANINGATTHEEND-OF-LIFE…

• 94%stronglyagreeorsomewhatagreethatdeathisimportantpartoflife• 67%believecaringforpeoplewhoaredyingisarewardingexperience

…ANDTHEIMPORTANTTASKSOFCOMPLETINGLIFE.

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• 69%ratereviewingtheirlifehistorywithfamilyanimportantorsomewhatimportantend-of-lifeactivity• 84%hopetosharetime,giftsandwisdomwithothers• 89%wanttohaverelationshipissuessettledwithfamily• 92%wanttoknowhowtosaygoodbye

THEYBELIEVEMEANINGANDSPIRITUALITYAREIMPORTANT…

• 81%considerthemselvesveryorsomewhatreligious/spiritual• 53%areaffiliatedwithanorganizedfaithcommunity• 86%wanttohaveasenseoftheirownworthattheendoftheirlife

…ANDPLAYASIGNIFICANTROLEATTHEEND-OF-LIFE…

• 89%saidbeingatpeacespirituallywasveryimportantorsomewhatimportantwhentheythinkaboutdying• 40%reportthattheirspiritualpracticeorreligionaffectend-of-lifechoicestoagreatextent

…TOTHEEXTENTTHATPEOPLEWANTSPIRITUALLEADERSANDFAMILYCOMMUNITIESTOBEINVOLVEDINTHEIR

END-OF-LIFECARE.

• Between17%and35%indicatedtheirfaithcommunityshouldprovidesupportrangingfromencouragingthemwhentheyaredowntoprovidingtransportation.

• 18%wantaspiritualleader/clergytoinitiateaconversationwiththemaboutend-of-life• Thepresenceofaspiritualleaderisveryimportantto35%andsomewhatimportantto29%ofpeoplewhen

theythinkabouttheirowndeath

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COMMUNICATINGWISHES:PREFERENCES,AWARENESS,ACTIONS,ANDCONVERSATIONSSignificant efforts to promote advance careplanning conversations have been made sincethe2006IdahoStatewideEnd-of-LifeSurveywasconducted. Two national examples of publicengagement and system-changing initiativesinclude The Conversation Project and theHonoringChoices®NationalNetwork.Idaho,hasmore recently (over the past 2 years) seen anincrease in public awareness activities such asDeathCafes,NationalHealthCareDecisionsDayeventsandsystem-changeinitiativessimilartoHonoringChoices®Idaho(HCI).

The question at hand is: Will these initiatives make a difference? This 2018 Idaho Survey:PersonalPreferencesatEnd-of-LifeprovidesabaselineformeasuringtheimpactoftheseIdaho-specificinitiativesoverthecomingyears.Thissurveyalsoprovidesasnapshotoftheexperiences,attitudes, knowledge, and actions of adults related to end of life conversations and care. Acomparison of findings from the 2006 and 2018 surveys affords an opportunity to explorechangesovertime.WhileitistooearlytoassesschangesfromtheIdaho-specificinitiatives,the2018 surveyprovidesabaseline for looking forwardas the initiativesexpand throughout thestate.

PREFERENCES

People in Idaho have strong preferencesabout their own end-of-life care. Resultsfromthe2006and2018surveysaresimilar:over 90% of respondents expressed thedesiretodieintheirownhomes,80%donotwanttobeaphysicalburdentolovedones,and72%saynotbeingabletocommunicatetheirwishesand/orneedswouldbeworsethandeath.

While there are fears and concernsassociatedwithdeathanddying,only34%of

While 92% of Americans say it’simportanttodiscusstheirwishesforend-of-lifecare,only32%havehadsuchaconversation.ThemajorityofAmericans(95%)saytheywouldbewilling to talk about their wishes,and53%evensaythey’dberelievedtodiscussit.v

FIGURE3.FEARSANDCONCERNS

30%

34%

30%

38%

0 20 40 60 80

Financialburdentofamilyorfriends

Financialburdenpayingformedicineormedicalcare

FearsandConcerns

Veryconcerned Somewhatconcerned

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respondentswereafraidofdying.Themorepressingfearsorconcernswererelatedtobeingafinancialburdentofamilyandexperiencingafinancialburdenpayingformedicineormedicalcare.

AWARENESS

Respondentstothesurveysconductedin2006and2008indicatedhighlevelsofawarenessofcommunicationandplanningtoolssuchasalivingwill,healthcareproxy,lastwillandtestament,funeralplans,andorganandtissuedonation.

HaveHeardAbout2018 HaveHeardAbout2006

LivingWill 94% 98%

HealthCareProxy/DurablePowerofAttorneyforHealthCare/Healthcareagent

100% 91%

POSTdocument 75% NotavailableinIdahoin2006

LastWillandTestament 99% 97%

FuneralPre-Plans 97% 96%

OrganandTissueDonation 97% 95%FIGURE4.HAVEYOUHEARDABOUT…?

Theresultsfromthe2018surveysuggesta lackofawarenessanduseofthenewMedicare benefit for advance careplanning with a health care provider.Only16%ofrespondentsovertheageof65reportedhavinghadtheirhealthcareproviderdiscussadvancedcareplanningwiththem.

TAKINGACTION

While 97%of respondents to the Idaho2018 survey indicated that itwas somewhator veryimportantthattheygettochoosetheirtreatmentoptionswhendealingwiththeirowndeath,only45%hadcompletedalivingwillorotherwritteninstructions.Findingsfromthe2006and2008revealedsimilarpatternsfortheuseofcommunicationandplanningtools.

AsofJanuary1,2016,theCentersforMedicareandMedicaid Services began paying providers forguiding voluntary Advance Care Planningconversations under the Medicare Physician FeeSchedule and the Hospital Outpatient ProspectivePaymentSystem.vi

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HaveHeardandCompleted HaveHeardandCompleted

(65andolder) (Youngerthan65)

LivingWill 59% 33%

HealthCareProxy/DurablePowerofAttorneyforHealthCare 63% 39%

POSTdocument 44% 19%

LastWillandTestament 66% 38%

FIGURE5.2018HAVEYOUHEARDABOUTANDCOMPLETED…?

Resultsfromthe2018surveyidentifiesanareaofpossibleconfusionabouttheuseoftheIdahoPOST document (Physician’s Order for Scope of Treatment). Twenty-seven percent ofrespondentsindicatedtheyhadheardaboutandcompletedaPOSTdocument.AnanalysisoftherespondentsindicatingtheyhadaPOSTInIdaho,revealedthat85%reportedtheirhealthtobeingoodtoexcellentconditionandonly26%hadaseriousorchronicillness.ThisisinconsistentwiththelanguageandintentofIdahoStatutes(39-4512A)andguidelinespublishedbytheIdahoDepartment of Health andWelfare (see box). This inconsistency suggests a need for publicawarenesscampaignsandalignmentofpolicyandprocesseswiththestatedintentofthePOST.

InIdaho,anindividualortheperson’ssurrogatedecisionmakerisprovidedwithaccesstothePOST form by an attending physician, Physician Assistant, or Advanced Practice RegisteredNurse.viii

CONVERSATIONSWITHFAMILY

IncreasingthenumberofpeoplewhodiscussandcommunicatewishesandcompleteadvancecareplanningdocumentsisimportanttoimprovingcareattheendoflifeinIdaho.

Themajorityofrespondents(87%)reportedbeingsomewhatorverycomfortabletalkingaboutdeathwithfamilyand73%indicatedtheyhadtalkedtotheirspouseorpartnerabouttheirwishesforcareneartheendoflife.Thesefindingsaresimilartothosefromthe2006Idahosurveyandconsistentwithfindingsfromotherstateandnationalsurveys(Figure6).

Oneindicatorofachangeinreadinesstohaveconversationsaboutend-of-lifewishesinIdahofrom the surveys was that more than 75% of respondents in 2018 were comfortable with

Aphysician’sorderforscopeoftreatment(POST)formisgenerallyrecommendedincaseswhereapatienthasanincurableorirreversibleinjury,achronic,progressiveorend-stagedisease,illnessorcondition,orwhereapatientisinapersistentvegetativestate.Apostformisalsoappropriateifsuchconditionsareanticipated.vii

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identifyingahealthcareagentascomparedto56%in2006.Whilethismayindicateagreaterlevelofawareness,only40%ofrespondentsin2018hadidentifiedahealthcareagentsuggestingthatbarrierstotakingactionexist.

FIGURE6.PERCENTOFRESPONDENTSWHOSAY…

CONVERSATIONSWITHHEALTHCAREPROVIDERS

Thepercentageofindividualswhohadspokenwiththeirprimarycareproviderand/orspecialistaboutendoflifewishesremainslowwithonly14%and10%havingdonesoin2018and2006,respectively.Thisisinstarkcontrasttowhorespondentsreportwantingtoinitiateaconversationandwhotheywouldtrusttoprovideinformationaboutendoflifeissues.Almost60%wanttheirprimarycarephysicianand/orspecialist tostart theconversationandtheseprofessionalsareviewedasthemosttrustedsourceof informationby79%ofrespondents(multipleresponseswereallowedtoeachquestion.)

Identifiedahealthcareagent?

Spokenwithspouseorpartner?CompletedalivingwillIdentifiedhealthcareproxy?

HavespokenwithPCPand/orSpecialistaboutwishes

WantPCPand/orspecialisttoinitiateconversation

Percentofrespondentswhosay…

56

68

35

31

10

50

78

73

45

40

14

59

0 20 40 60 80

2006 2018

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FIGURE7.WHOHAVEYOUTALKEDTO,WHODOYOUWANTTOINITIATETHECONVERSATION,WHODOYOUTRUST

Thedifferencesbetweenpeoplewhoinitiatedconversationsaboutend-of-lifeissuesandtheirdesire to have others initiate the discussion is similar to the gap between knowledge aboutadvancedcareplanningtoolsandtheiruse.Asnotedearlier,respondentsarefamiliarwiththeavailabletools,butmosthavenottakenaction.

HaveHeardandCompleted HaveHeardandCompleted

(65andolder) (Youngerthan65)

LivingWill 59% 33%

HealthCareProxy/DurablePowerofAttorneyforHealthCare 63% 39%

POSTdocument 44% 19%

LastWillandTestament 66% 38%FIGURE8.HAVEHEARANDCOMPLETED(OVER65ANDYOUNGERTHAN65)

Anationalreportpublishedin2017indicatedthatindividualsovertheageof65weremorelikelytocompleteanytypeofadvanceddirectives.ixResultsoftheIdahosurveyreflectsimilarfindingswithindividuals65yearsofageandoldermuchmorelikelytohavetakenstepstodocumentandcommunicatetheirwishes.

0

20

40

60

80

100

Percen

tage

WhoHaveYouTalkedTo;WhoDoYouWanttoInitiateConversation;WhoDoyouTrust

Whodoyoutalktoaboutyourwishesforcareneartheendofyourlife

Whodoyouwanttoinitiateaconversationregardingend-of-lifeissues

Whodoyoutrusttoprovideinformationonend-of-lifeissues

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COMPASSIONATECARE

Compassionate care is the combinationofmedical,emotional,psychologicalandspiritualcareforpeoplewithseriousorterminalillnesstomaketheirlivesmorecomfortable.Itcanoccurattheonsetofa chronic illness and is known asPalliative Care, or when the illness isterminaland isknownasHospiceCare.Hospice care is generally provided in aperson’shome.

MEDICALTREATMENT

Since2006,manylocalandnationaleffortstosupportend-of-lifedecisionmakingandadvance careplanning conversationshavebeen instituted. Although efforts to raiseawareness have increased, findings fromthe 2006 and 2018 Idaho survey highlightthe need for integration of conversationsintohealth care systems.Whileover two-thirdsofrespondentsinthe2006and2018surveyindicatedtheyhadtalkedabouttheirwishes for care near the end-of-life withtheirspouseorpartner,lessthan15%hadspokenwiththeirprimarycareprovideroraspecialist.Thislackofcommunicationwithahealthcareprovidercontrastswiththeimportanceofhavinghonestanswersandinformationabouttreatmentoptionswhendealingwiththeirowndeath,Figure9.

1AtulGawande,MD,MPH,isasurgeon,writer,andpublichealthleader.Dr.GawandehasbeenastaffwriterforTheNewYorkermagazinesince1998andhaswrittenfourNewYorkTimesbestsellers:Complications,Better,TheChecklistManifesto,andBeingMortal:MedicineandWhatMatters in theEnd. 1He servesasanadvisor to theConversationProject.

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FromtheInstituteofMedicine’sDyinginAmerica:

Ideally, health care should harmonize with social,psychological,andspiritualsupporttoachievethehighestpossiblequalityof life forpeopleatall ageswith seriousillnessesor injuries.Toward thisend, the IOMcommitteerecommends that integrated, person-centered, family-oriented,andconsistentlyaccessiblecareneartheendoflifebeprovidedbyhealthcaredeliveryorganizationsandcoveredbygovernmentandprivateinsurers.x

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FIGURE9.HOWIMPORTANTWHENDEALINGWITHYOUDYING

PAINMANAGEMENT

Theneedtobalancethemanagementofpainwithappropriateuseofmedicationisasignificantchallenge for patients andproviders andhas garnered the attentionof thepublic andpolicymakers.In2013,theIdahoBoardofMedicineadoptedthePolicyfortheUseofOpioidAnalgesicsintheTreatmentofChronicPain.ThiswasfollowedbytheIdahoOpioidMisuseandOverdoseStrategicPlan2017-2022developedbytheIdahoOfficeofDrugPolicy.

Painmanagementisacomplexissue,especiallyinlightoftheopioidcrisisintheUnitedStates.Respondentsin2016and2018reportedsimilarlevelsofconcernaboutbecomingaddictedtopainmedications(13%)andbeinggiventoomuchmedication(9%).

Painmanagement continues to be a significant issue in end-of-life carewith themajority ofrespondents68%(2018)and63%(2006)reportingthat livingwithgreatpainwouldbeworsethan death. Almost all (95%) also identified being free from pain as “very or somewhatimportant.”

The importance of information and having resources available to manage pain were highprioritiesandconsistentacrosstime.Almostallrespondents“stronglyorsomewhatagreed”withwanting information about pain management available (96%) and access to medications tomanagepain(95%),Figure10.

FIGURE9.DEALINGWITHYOUROWNDYING

42%

62%

70%

84%

85%

95%

33%

24%

24%

15%

12%

3%

0% 20% 40% 60% 80% 100%

Notreceivingartificialnutrition/hydration

Beingoffartificiallife-sustainingsupport(suchas…

Knowingmedicinewasavailabletoyou

Understandingyourtreatmentoptions

Choosingyourtreatmentoptions

Honestanswersfromyourdoctor

Howimportantwouldeachofthefollowingbetoyouwhendealingwithyourowndying?

Veryimportant Somewhatimportant

21

FIGURE10.PREFERENCESFORPAINMANAGEMENT

HOSPICESUPPORT

The findings from this survey indicatehigh levels of awareness about hospicewith 84% of participants expressing aninterest in using hospice support; thisrepresents an increase from the 2006survey findings of 78%. More people,75% (2018) and 66% (2016) knowsomeonewhohasreceivedhospiceandmorepeople(12%vs6%)havereceivedhospiceservicesthemselves.

Althoughthemajority(86%)wouldwanttoreceivehospicesupportintheirownhome,21%wouldwanttoreceivehospiceinahospiceresidence.Thenumberofpeoplewholearnedabouthospiceservicesfromsomeonewhousedhospiceincreasedby11%fromthe2006survey.Thenumberwhohaveusedhospiceservicesthemselves increased from6% in 2006 to 10% in 2018.Also 57% said theywere aware thatMedicareandMedicaidpaidforhospiceservicescomparedtoonly43%in2006.TheMedicare

84%

73%

44%

15%

43%

11%

16%

14%

24%

38%

27%

37%

27%

43%

10%

28%

10%

33%

27%

5%

26%

6%

23%

11%

0% 20% 40% 60% 80% 100%

Iwantinformationaboutoptionsformanagingmypain.

Iwouldtakepainmedicinetomanagemypain.

Iwouldonlytakepainmedicineswhenthepainissevere.

IamafraidIwillbecomeaddictedtothepainmedicines…

Iwouldtakethelowestamountofmedicinepossibleto…

IamafraidIwouldbegiventoomuchpainmedicine.

Iamworriedpainmedicationwillmakemeconfused,“out…

PerferencesforPainManagementatEndofLife

Stronglyagree Somewhatagree Somewhatdisagree Stronglydisagree Notsure

Considered to be themodel for quality, compassionatecare for people facing a life-limiting illness or injury,hospicecareinvolvesateam-orientedapproachtoexpertmedical care, pain management, and emotional andspiritualsupportexpresslytailoredtothepatient’sneedsand wishes. Support is provided to the patient’s lovedonesaswell.Atthecenterofhospiceandpalliativecareisthebeliefthateachofushastherighttodiepain-freeandwith dignity, and that our families will receive thenecessarysupporttoallowustodoso.xi

22

hospicebenefitcoverssupportfortwo90daybenefitperiodsfollowedbyanunlimitednumberof60daybenefitperiods.xii

FIGURE12.AWARENESSOFHOSPICESERVICES

CARINGCOMMUNITIES

Mostpeoplewhoprovidecareforafamilymember,friendorneighborneartheend-of-lifedon’tthinkofthemselvesasa“caregiver.”Caregiversplayanimportantandpotentiallystressfulrole.

86%

21%

21%

12%

11%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

Inmyownhome

Inaresidentialfacilitysuchasassistedliving

Inahospiceresidence

Inahospital

Inanursinghome

Wherewouldyouwanttorecivehospicesupport?CheckALLthatapply.

FIGURE11.WHEREYOUWOULDWANTHOSPICESUPPORT

4% 10%

19% 20%

34%

72%

0%

20%

40%

60%

80%

100%

Awareness of Hospice Services

Iam/wasahospicevolunteer.Ihaveusedhospiceservicesmyself.Iheardfromahealthcareprofessional.Ireadliterature/newspaper/TV/radio/othermedia.Iheardfromothers.Iknowsomeonewhousedhospiceservices.

23

In 2015, the National Alliance for Caregiving and AARP reported 44 million caregivers haveprovidedunpaidcaretoanadultorchildinthelast12months.xiii

CaregiversacrossIdahomustmanagemulti-facetedandcomplexcareonbehalfoftheirlovedone,andmanydothiswithouttheinformation,training,andsupporttheyneed.Theresultofthisiscaregiverburnout,costlyhospitalization,orinstitutionalcareforthecarerecipient.xivWiththepassageofHouseConcurrentResolution24,the2015IdahoLegislatureformallyrecognizedfamilycaregiversasanessentialpartofIdaho'shealthcaresystem,providinguncompensatedsupportandcaretoafamilymemberorlovedonewhoiselderlyorhasaphysicalorintellectualdisabilityormentalillness.

FAMILYSUPPORT

Theimportanceoffamilycaregiverswasevidencedintheresultsofthe2018survey.Over75%ofrespondentsidentifiedchildrenorotherfamily,astheirprimarysourceofsupportatendoflife.Thedesiretohavefamilymembersinvolvedandinformedwasclear;themajoritywanttheirchildrenand/orotherfamilyto“knowwhattheywantwhentheydie”(88%),“knowaboutmyillness”(87%),and“listenwhenItalk”(88%).Respondentsalsorecognizedfamilymembersasaprimary source of caregiver support, i.e., providing transportation, helping with chores, andofferingencouragement(Figure13).Theseresultsweresimilartothe2006survey.

FRIENDSANDNEIGHBORS

Supportfrom“friendsandneighbors”wasidentifiedaslessofasourceofsupportthanspousesand children in both the 2018 and 2006 survey. Fifty percent report they would likeencouragementfromfriendsandneighbors“whentheyaredown.”

HEALTHPROVIDERS/FAITHCOMMUNITY/PAIDCAREGIVERS

Membersofthehealthandfaithcommunitiesandpaidcaregiverswereconsistentlyrecognizedas secondary sources of support in comparison to familymembers, see Figure 13.A notablechangefrom2006wasadeclineinthelevelofsupportanticipatedorexpectedfromtheirfaithcommunity.Thiscouldbeareflectionofasmallernumberofrespondentsreportinganaffiliationwithanorganizedfaithcommunity;53%in2018and62%in2006.

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Spouse/partner

Childrenandotherfamily

Paidcaregivers

Friends/neighbors

Communityorganizations

Healthproviders

Faithcommunity

ListenwhenItalk 81% 88% 44% 42% 7% 50% 27%

ProvideTransportation 78% 84% 43% 37% 16% 17% 17%

Helpwithchores 72% 78% 52% 32% 10% 8% 20%KnowwhatIwantwhenIdie 81% 88% 25% 24% 3% 32% 18%

EncouragemewhenIamdown 77% 84% 28% 50% 8% 30% 35%

Knowaboutmyillness 79% 87% 43% 41% 6% 56% 27%

FIGURE13.WHOSHOULDPROVIDEVARIOUSTYPESOFSUPPORT

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MEANINGANDSPIRITUALITY

“Meaningoflife”maymeandifferentthingstodifferentpeople,andwhencontemplatingtheendofourlivesweexploreandpossiblyreframewhatgivesultimatemeaningtoourlives.Thecapacitytosearchforlife’smeaningiscommontoallpeople.Itisoneofthethingsthatconnectustoeachother.xv

Inthe2018end-of-lifesurvey,themajorityof respondents identified the followingactivities and situations as “important orveryimportant:”beingatpeacespiritually,having relationship issues settled, havingfamily and friends visit, being able tocompleteaLastWillandTestament,havingasenseofyourownworth,sharingtimeandgifts of wisdom, fulfilling personalgoals/pleasures, and reviewing life historywithfamily.

FIGURE14.DEALINGWITHYOUROWNDYING

69%

70%

66%

58%

48%

42%

29%

23%

19%

27%

28%

36%

36%

40%

0% 100%

Family/friendsvisitingyou

Havingrelationshipissuessettledwithmyfamily

BeingabletocompleteaLastWillandTestament

Havingasenseofyourownworth

Sharingwithothersyourtime,gifts,orwisdom

Fulfillingpersonalgoals/pleasures

Reviewingyourlifehistorywithyourfamily

How important would each of the following beto you when dealing with your own dying?

Veryimportant Somewhatimportant

26

Respondentsconsideredunderstandingtreatmentoptionsaswellaschoosingtreatmentoptionsvery important (84%). Not being a physical burden to loved ones was also considered veryimportantaswellasknowinghowtosaygoodbye.WhenaskedtosharetheirfearsaboutdyingmoreIdahoanswereafraidofdyingpainfully(77%),thandyingfromalong-termillness(71%).Twenty-fivepercentareveryafraidofdyinginaninstitutionand11%wereveryafraidofdyingalone.

ThespiritualdimensionsofdyingareimportanttoIdahoans.Fortypercentofrespondentssaidthey are very religious/spiritual. A greater number (41%) identified themselves as somewhatreligious/spiritual.Ninepercentidentifiedthemselvesasnotatallreligious/spiritualcomparedto3%in2006.

FIGURE15.CONSIDERYOURSELFRELIGIOUS/SPIRITUAL(2006&2018)

Fifty-threepercentareaffiliatedwithanorganizedfaithcommunity/spiritualpracticewhichis9%lessthanin2006.

FIGURE16.AFFLIATEDWITHANORGANIZEDFAITHCOMMUNITY(2006&2018)

Thetrendtowardsadecreasingneedforclergy/spiritualleaderstohavearoleinendoflifecare,conversationsanddecisionswasalsoevident in therespondents in2018 indicatingthat theirspiritual practice/religion affects their end-of-life decision making “to a great extent” (40%

43% 43%

11% 3% Doyouconsideryourself...(2006)

Veryreligious/spiritualSomewhatreligious/spiritualNotveryreligious/spiritualNotatallreligious/spiritual

40% 41%

11%

9% Doyouconsideryourself…(2018)

Veryreligious/spiritual

Somewhatreligious/spiritual

Notveryreligious/spiritual

Notatallreligious/spiritual

63% 37%

Areyouaffiliatedwithanorganizedfaithcommunity?(2006)

Yes

No

53% 45%

Areyouaffiliatedwithanorganizedfaithcommunity?(2018)

Yes

No

27

comparedto52%in2006).Additionally,14%reportedthattheirspiritualpractice/religiondidnotaffectendoflifedecisionmakingcomparedto6%in2006.

FIGURE17.HOWDOESYOURSPIRITUALITYEFFECTYOUREOLDECIONSIONMAKING?(2006&2018)

Thevalueofbeingatpeacespirituallywasrecognizedas“veryorsomewhatimportant”for89%ofrespondentswith63%indicatingthepresenceofaspiritualleaderwouldbeveryorsomewhatimportant.Again,thesenumbersarelowerthanthosefromthe2006survey.

Fewer individuals in the2018survey (18%) indicatedadesire tohaveclergy/spiritual leadersinitiateconversationsregardingend-of-lifeissuescomparedto2006(24%).Fewerrespondentsalso indicated theywould trust clergy/spiritual leaders to provide information on end-of-lifeissues (21%).Althoughrespondentsare indicatingtheirdesire tohaveclergy/spiritual leadersinitiate theseconversations,only4%(in2006and2018) reportedhavingaconversationwithclergyorspiritualleaders.

FIGURE18.ROLEOFCLERGY/SPIRITUALLEADERSINEOLDISCUSSIONS(2006&2018)

52% 28%

14% 6%

Howdoesyourspiritualpractice/religionaffectyourend-of-life

decisionmaking?(2006)

Toagreatextent

Somewhat

Notmuch

Notatall

40%

29%

17%

14%

Howdoesyourspiritualpractice/religionaffectyourend-of-life

decisionmaking?(2018)

Toagreatextent

Somewhat

Notmuch

Notatall

4%

24%

31%

4%

18% 21%

0% 5%

10% 15% 20% 25% 30% 35%

Percentofrespondentswhotalkedwithclergy/spiritualleadersabout

wishesforEOL

Percentofrespondentswhosewantclergy/spiritualleaderstoinitiateEOL

discussions

Percentofrespondentswhotrustclergy/spiritiualleadertoprovideinformationaboutEOLissues

Roleofclergy/spiritualleadersinEOLdiscussions

2006 2018

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WHEREDOWEGOFROMHERE?

The results of this survey reveal “a glass half full, half empty” perspective on individualpreferences forconversationsandcareat theendof life.Although Idahoansarecomfortabletalkingaboutdeathandwishtoengageinadvancecareplanning,fewhavedoneso—fewhavecompletedalivingwill,andevenfewerhaveidentifiedahealthcareagentorspokenwiththeirhealthcareprovideraboutwishesforcare.

PositiveoutcomesforIdahoansareatstakeifthegapsbetweenwhattheysaytheywant,whatactionstheytake,andthecaretheyultimatelyreceivearenotaddressed.Idahocurrentlylacksasystemicandsystematicapproachtoadvancecareplanning(ACP),palliativecareandcaregiversupport,howeverthereiscurrentworkinIdahothatcanbeleveragedtoaddressthesegaps.Weproposethefollowingrecommendations.

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In2015theInstituteofMedicineidentifiedtheneedforculturallyappropriatepubliceducationandengagementaboutend-of-lifecareplanningatthesocietal,communityandindividuallevels.

RECOMMENDATIONSFORADVANCECAREPLANNINGINIDAHO

Askingpeoplewhatmatterstothem,andensuringthatwhatmattersplaysadecisiveroleinthemedicalcaretheyreceiveistheessenceofadvancecareplanning.Since2016HonoringChoices®Idaho(HCI)hasbeenaddressingcommunity,familyandindividualneedsrelatedtoadvancecareplanning (ACP). The mission of HCI is to promote opportunities for advance care planningconversations in the context of one’s values, empower individuals to make and documentdecisions,andhelpensurehealthcarechoicesarehonored.HCIinpartnershipwithIdaho’stwolargesthealthsystems,St.Luke’sandSaintAlphonsus,andother healthcare and non-healthcare organizations in southwest Idaho are achieving astandardizedapproachtoACP.HCIprovidesacentralizedinfrastructuretocoordinatetrainingand technicalassistance tohelporganizationsandcommunitypartners (including faith-basedorganizationsandemployers)weaveevidencebasedadvancedcareplanningintoroutinecareandservice;developanddistributestandardizedACPtoolsandmaterials;advocateforsystemchanges;anddevelopanddistributepubliceducation.Theultimategoal is that this standardapproachtoadvancecareplanning is implemented inhealthcareandnon-healthcaresettingsstatewide,normalizingplanningconversationsandhonoringtheplansthatresult.UpdatingIdaho’ssystemofcentralizingallACPrelatedinformationisaneedrecognizedbyHCI,health care providers, the Idaho Health Quality Planning Commission and policy makers.CliniciansinIdahostilllargelyrelyonpaperforms,whicharenoteasilyaccessiblewhenneededmost,as inamedicalemergency.WhileACPdocumentsandconversationshaveevolved, themethod for storing and accessing this important information has not kept pace. It can’t beunderstatedhowimportantitisforIdahoans’advancecareplanningdocumentstobeavailablewhenandwheretheyareneeded.

1. Thesocietallevel,tobuildsupportforpublicandinstitutionalpoliciesthatensurehigh-quality,sustainablecare;

2. Thecommunityandfamilylevels,toraiseawarenessandelevateexpectationsaboutcareoptions,theneedsofcaregivers,andthehallmarksofhigh-qualitycare;and

3. The individual level, to motivate and facilitate advance care planning andmeaningfulconversationswithfamilymembersandcaregivers.xvi

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RECOMMENDATION1:ESTABLISHSUSTAINABLEFUNDINGFORHCI.

Achievement of this recommendation will assure ongoing outreach, public andprofessionaleducationaboutadvancecareplanning,andaccesstoadvancecareplanningassistanceforindividualsstatewide.SustainablefinancialsupportforHCIisneeded.

RECOMMENDATION2:ESTABLISHTHEINFRASTRUCTUREANDTECHNOLOGYTOSUPPORTAWEB-BASEDDOCUMENTREGISTRY.

Achievement of this recommendation will establish a secure, accessible, sustainableplatformtoensuredocumentedadvancecareplanningdocuments(advanceddirectivesandPOSTdocuments)areavailablewhereverandwheneverindividualsandhealthcareprovidersneedthem.

RECOMMENDATION3:INTEGRATEEVIDENCE-BASEDADVANCEDCAREPLANNINGPRACTICESSTATEWIDE

THROUGHTHESUPPORTOFHCI.

Achievement of this recommendation will weave standardized, evidence-based ACPpractices within health care and community organizations statewide, promotewidespread use of consistent and easy-to understand language about advance careplanning,andincreaseaccesstohighqualityplanningassistance. IntegratingACPintoroutinehealthcare,normalizingtheconversationsamongalladultsregardlessofageorhealthwillresultineasierandmorefrequentACPconversationsforpeoplewithseriousillnessandattheendoflife.

RECOMMENDATIONSFORPALLIATIVECAREINIDAHO

Thesurveyresultssuggestaneedtoimproveend-of-lifecareinIdahotoassurethatoutcomesreflect the wishes and preferences of individuals. Survey respondents make clear that painmanagement is very important to them, as is dying at home. These preferences can beaccomplishedby integratingpalliativecare,hospiceservices,andACP intoavarietyofhealthdeliveryandcommunity-basedsettings.

Palliativecareisanapproachtocarethatcanimprovethequalityoflifeforpatientsandtheirfamilies facing serious and life-threatening illnesses. Palliative care, unlike hospice, can andshouldgohand-in-handwithcurativetreatmentandisprimarilydeliveredinhospitalsettings.Optimally, palliative care is provided in a patient/family-centered environment -where thepatientwantstobe-byateamofphysicians,nurses,socialworkersandothers,workingtoassure

31

theeffectivemanagementofsymptoms,pain,andstressassociatedwithachronicorseriousillness.Familymeetingsandcommunicationaboutthepatients’goalsofcare,treatment,andmanagementofpainarethespecificcompetenciesofpalliativecare.

RECOMMENDATION1:ENCOURAGEIMPLEMENTATIONOFPALLIATIVECAREEDUCATIONANDLICENSURE/RE-LICENSURESTANDARDSTHATASSURETHEDELIVERYOFHIGHQUALITY,PATIENT-CENTEREDSERVICES.

Achievementofthisrecommendationwillassureaskilledworkforcepreparedtoprovidesupportforpatientsandfamiliesinavarietyofsettings.

RECOMMENDATION2:IMPLEMENTQUALITYMEASURESANDFISCALSUPPORTNEEDEDTOASSUREDELIVERYOF

PALLIATIVECAREINAVARIETYOFSETTINGS.

Achievementofthisrecommendationwillprovidesystem-levelsupportandoversighttodevelopcommunitypalliativecaremodelsthatincludeprimary,secondary,andtertiarydeliveryofcare.xvii

RECOMMENDATION3:INTEGRATEEVIDENCED-BASEDPRACTICESFORCOORDINATIONOFCAREACROSSSYSTEMSANDCOMMUNITYTHROUGHSUPPORTOFIDAHOHEALTHCONTINUUMOFCAREALLIANCE(IHCCA)ANDSIMILARORGANIZATIONS.

Achievement of this recommendation will enable individuals to live and age in theirresidenceofchoice;providesafertransitionsofcareandeducationacrossthecontinuumofcare;andrepresenttheinterestsoftheacutelyill,chronicallyill,disabledanddyingIdahoans.xviii

RECOMMENDATIONSFORRECOGNIZINGFAMILYCAREGIVERSANDCOMMUNITY-BASEDNETWORKSINIDAHO

FamilybondsandsupportarehallmarksofIdahoandcornerstonesofindependenceforolderadultsandindividualswithphysicaloremotionaldisabilities,orchronicillnesses.Theresultsofthis surveyhighlight the importanceof family caregivers at endof life. Family caregivers areidentifiedasessentialprovidersofphysical,social,andpsychologicalsupportandanimportantcomponentofthecommunicationnetwork.

We support the work of the Idaho Lifespan Family Caregiver Alliance (ICA) and encourageexpandingopportunitiestoengagecaregiversandtheindividualstheycareforinadvancecareplanning conversations. The Alliance, established in 2013, is a broad coalition of public andprivateorganizationsand individuals.Thegoalof theAlliance is toadvance thewell-beingof

32

caregiversbypromotingcollaborationthatimprovesaccesstoqualitysupportandresourcesforfamilycaregiversacrossthelifespan.Wealsorecognizenationalefforts like thepassageofRecognize,Assist, Include,SupportandEngage (RAISE) Family Caregivers Act in January 2018. RAISE supports person- and family-centeredcareinallhealthsettingsandserviceplanningincludingcaretransitions,coordinationandadvancecareplanning.

RECOMMENDATION1:INTEGRATEEVIDENCE-BASEDACPPRACTICESINCOMMUNITY-BASEDORGANIZATIONS

Achievement of this recommendationwill increase participation in ACP and promotepositive social normsaroundACP conversations. Community-basedorganizations (e.g.Area Agencies on Aging, Centers for Independent Living, Patient-centered MedicalHomes,faithcommunity,etc.)arenaturalpathwaysforsupportforindividualsandfamilycaregivers. Integration of the education and support offered by HCI into theseorganizations is critical toassuring thatconversationsareconducted in thecontextofone’svaluesandaccessiblewhenneeded.

RECOMMENDATION2:RECOGNIZEANDSUPPORTFAMILYCAREGIVERSINTHECONTINUUMOFCARE

Achievementofthisrecommendationwillassurepatient-centered,family-informedcare.It ispremisedontheintegrationofcaregivers intothepatient-centeredmedicalhomeand the availability of evidenced-based programs that promote caregiver self-care(PowerfulToolsforCaregivers,community-basedrespite).

Theresultsofthisstatewidesurveyprovidesrichinformationfromawidecrosssectionofadults35yearsandolder.Peoplerespondingtothe12-pagequestionnaireshareddeeplypersonalfeelingsandconcerns,askedforinformationandexpressedpreferencesforcareattheendoflife.

Thesignificanceofcommunicationwasrecognizedasimportantbyalmostallrespondents,especiallythesentiment“notbeingabletocommunicatemywishesand/orneedstofamilyandfriendsisworsethandeath.”Idahomustcontinuetoworktobuildsystemsofcarethatpromotesplanningandcommunicationwithinfamiliesandwithhealthcareprovidersandensuresaccessibilitytoadvancecareplanningdocumentswhereverandwheneverindividualsandhealthcareprovidersneedthem.

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APPENDIXA-TECHNICALDESCRIPTION

INTRODUCTION

The Idaho Survey: Personal Preferences at End-of-life was a joint project between PatientCenteredOutcomesResearchInitiate(PCORI),PipelinetoProposalawardandtheCenterfortheStudyofAgingatBoiseStateUniversity.SponsoringmembersoftheprojectincludedHonoringChoices Idaho, Boise State University School of Nursing, the St Alphonsus Regional MedicalCenterandtheStLuke’sHealthSystem.Resourcesfromthesepartnerswereusedforprinting,mailing, staff time, and other associated costs. The Center managed the project and thisAppendixdescribesthetechnicalaspectsoftheproject.

SURVEYINSTRUMENT

The survey items and format were adapted from the Idaho Statewide End-of-life Surveyconductedin2006.The2006instrumentwaspatternedaftertheCommunitySurvey,developedbyLife’sEndInstitute.

Adaptationsofthesurveywerekepttoaminimumtoassuretheintegrityoftheinstrumentwasmaintained and to allow for comparisons between the 2006 and 2018 surveys conducted inIdaho.WordinginafewitemswaschangedtoreflectIdaho-specificprogramsandresources.

The survey was designed to collect basic demographic, socio-economic, and health statusinformationaswellasinformationonattitudes,beliefs,experiences,andbehaviorsrelatedtoend-of-lifepreferencesandplanning,seeAppendixB.Itemsincludedperceptionsof:

• advancecareplanning,• death,• hospiceservices,• preferencesformedicalpracticesandpainmanagement,• knowledgeand/oruseofplanningtoolssuchaswillsandhealthcareproxies,• financialconcerns,and• currentanddesiredsourcesofinformationandsocialsupport.

SAMPLING

Thesurveywasdistributedtoarandomsampleof4000adults35yearsandolderwholivedinprivateresidencesinIdaho.Thelistofnames,phonenumbers,andmailingandemailaddresses

34

waspurchasedfromtheMarketingSystemsGroup,aconsultingandmarketingresearchfirm.Marketing Systems Groups data lists are compiled from many sources including telephonedirectories,U.S.CensusBureaudata,U.S.PostalServiceinformation,electronicemailrecords,andotherpublicrecords.ForthisprojectasamplewasrequestedthatincludedequalnumbersofmenandwomenandthatrepresentedthegeographicdistributionofthepopulationacrossthestateofIdaho.

DATACOLLECTION

Prior to contactinganypersons in the sample, approval for the studywas received from theInstitutional Review Board (IRB) of Boise State University, which is the federally mandatedmechanismusedtoprotecthumansubjectsinresearch.ThecoverletterforthesurveystatedthatthisresearchwasapprovedbytheIRBandprovidedphoneandaddressinformationfortheprimaryresearchersandtheIRBstaffpersonwhocouldbecontactedwithanyquestions.

The4000peoplelivinginIdahowhowereincludedinthesamplereceivedtwopostalmailings.First,anannouncementpostcardwasmailedonMarch2,2018.Oneweeklater,apacketwasmailedincludingacoverletter,asurveybooklet,abusinessreturnenvelope,andanentryformfor a drawing of five $100 prizes. For those individualswith an email address (n = 2077) anelectronicversionofthecoverletter,survey,andentryformforthedrawingwassentoneweekafter the postalmailing of the postcard. The announcement postcard, emailmessage, coverletter,andprizedrawingentryformarealsoreproducedinAppendixB.Asampleofrecipientsfromunder-representedareasofthestatewerecalledandofferedanothercopyofthesurveyifthe survey was not returned within three weeks. No surveys were completed as phoneinterviews.Nonamesor addresseswere includedon the surveysand thedatabasewith thisinformationwasmaintainedonasecurecomputerandwasnotmergedwiththesurveyresponsedata.Astudyidentificationnumberwasusedtotrackcompletionduringthetimethesurveywasbeingfielded.

SurveyswerereturnedtotheCenterfortheStudyofAgingatBoiseStateUniversitybyUSpostorelectronically.EnvelopeswereopenedbyCenterstaffandthesurveybookletwasimmediatelyseparatedfromthedrawingentryform.Uponcompletionofthedrawing,theentryformswereshredded.

ANALYSISANDWEIGHTING

TheStatisticalPackageforSocialScience(SPSS,v24.0)andStatisticalAnalysisSoftware(SAS,9.4)computerprogramswereusedintheanalysisoffindingsfrom2018andthecomparisonofresultstothe2006survey.Descriptiveanalysisofthedemographic,socio-economic,andhealthstatus

35

informationaswellasinformationonattitudes,beliefs,experiences,andbehaviorsrelatedtoend-of-lifepreferencesandplanningwereperformed.

The demographic characteristics of the respondent population were compared to the Idahopopulation.Post-stratificationweightingwasusedtocorrectfordifferencesinageandgenderofthesamplepopulation.

RESPONSERATEANDSAMPLE&RESPONDENTCHARACTERISTICS

Ofthe4000surveysmailed,827(21%)werereturnedwiththesurveyformcompletedtotallyorin part. The majority (91%, n = 750) of the surveys were returned via postal mail with theremaindercompletedusingaweb-basedsurveytool.With827respondents,thesurveyhasasamplingerrorestimatedtobe+/-3%atthe95%confidencelevel.*

For respondents, self-reported demographic and additional socio-economic information isavailablefromthesurvey.Theresponsestotheseitemsareprovidedonthefollowingpage.

36

RESPONDENTCHARACTERISTICS

Gender % MaritalStatus % Female 57.0% Single,never

married4.5

Male 40.6% Married 70.6 Livingwitha

partner3.0

Age Separated 0.2 44andunder 6.8 Divorced 9.2 45-54 15.6 Widowed 10.2 55-64 26.4 Livealone 65-74 29.4 Yes 18.9 75-84 15.7 No 76.8 85andolder 3.5 Self-RatingofHealth

Hispanic Yes 1.5 Excellent 19.0 No 94.6 VeryGood 35.7

Race Good 28.1 White 94.1 Fair 12.6 Asian 1.0 Poor 2.7 Black 0.1 NativeAmerican 2.1 Haveaserious

chronicillness

Income Yes 21.6 Lessthan10K 2.5 No 74.6 10Ktounder20K 7.0 Anothermemberof

householdwithaseriouschronicillness

20Ktounder30K 8.3 Yes 18.4 30Ktounder40K 9.4 No 78.7 40Ktounder50K 11.7 Coveredbyany

HealthCareInsurance

50Ktounder60K 9.6 Yes 92.6 60tounder75K 12.7 No 4.2 75Kormore 33.9 Missing 4.8

Education Employmentstatus Lessthan

highschool1.5 Fulltime 34.0

HSorequivalent 13.1 Parttime 11.9 SomeCollege 40.1 Retiredandnot

working45.1

CollegeGraduate 23.9 Othersuchashomemaker

5.7

Post-gradorprofessionaldegree

18.9 Unemployedandlookingforwork

1.1

*Note:Intheory,withasampleofthissize,onecansaywith95percentcertaintythattheresultshaveastatisticalprecisionofplusorminus3percentagepointsofwhattheywouldbeiftheentireadultpopulationover35hadbeensurveyedwithcompleteaccuracy.Howeverthereareseveralotherpossiblesourcesoferrorinallsurveysthatmaybemoreimportantthantheoreticalcalculationsofsamplingerrorthataredifficultorimpossibletoquantify.

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APPENDIXB-SURVEYANDCOLLATERAL

1. Postcardmailedtopotentialrespondent2. Emailrecruitmentmessageandlinktosurvey3. Coverletter

4. Prizedrawingentry

5. Surveyformwithfrequenciesofresponses.

Note:thefrequenciesreportedinthisappendixareroundedtothenearestwholenumberand represent the actual percentages. This means that the percentage is calculated bydividingthenumberofpeoplewhoendorsedaresponsebythetotalnumberofrespondents.Usingthismethod,respondentswhodidnotanswertheparticularitem(theresponsewasmissing)are included in thecalculation. Including themissingmeans that the totalof thereportedpercentagesforeachitemmaybelessthan100.

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POSTCARDANNOUNCEMENT

39

EMAILRECRUITMENTMESSAGEANDLINKTOSURVEY:

Dear ___, , You have been selected to receive this survey from Boise State University Center for the Study of Aging. The survey is part of our effort to identify ways to improve quality of life at the end of life for people in Idaho. The survey should take about 20 minutes to complete. Answering this survey gives you a chance to tell us about your values, priorities and concerns. To complete the survey please see link below.

A similar survey was conducted in Idaho in 2006 and it has also administered in several other states and numerous communities around the country. The purpose of this effort is to update the information. The results will be used to develop community and statewide programs addressing issues such as pain management, access to services and family support at the end of life. Information from the Idaho survey will make it possible to tailor programs to specific needs in Idaho and more effectively promote advanced care planning conversations that will honor your choices.

Please complete this survey by April 30, 2018. By completing the survey, you consent to participate in this research project. If you chose to participant in the online survey, you will be provided with a link to enter the drawing for a $100.00 gift card.

All survey responses will be kept completely confidential and no individual responses will be reported. If you experience any discomfort or concerns while completing the survey we encourage you to contact your health care provider. If you have any comments or questions about this survey, please contact Dr. Kim Martz at (208) 426-3591, or Dr. Sarah Toevs at (208) 426-2452, or the Institutional Review Board at Boise State University, Office of Research Administration, 1910 University Drive, Boise, ID 83725-1135 or (208) 426-1574.

We thank you for your time and appreciate your assistance with this important project.

Kim Martz, PhD, RN Sarah Toevs, PhD Associate Professor Professor School of Nursing Director, Center for the Study of Aging Boise State University Boise State University

Follow this link to the Survey: ${l://SurveyLink?d=Take the Survey}

Or copy and paste the URL below into your internet browser: ${l://SurveyURL}

Follow the link to opt out of future emails: ${l://OptOutLink?d=Click here to unsubscribe}

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COVERLETTER

January11,2018YouhavebeenselectedtoreceivethissurveyfromBoiseStateUniversityCenterfortheStudyofAging.Thesurveyispartofourefforttoidentifywaystoimprovequalityoflifeattheend-of-lifeforpeopleinIdaho.Thesurveyshouldtake about 20 minutes to complete and is also available online at https://boisestate. az1. qualtrics.com/jfe/form/SV_e57g5YgmzBHJYlTforyourconvenience.Youarepartofasmallgroupofpeople35yearsandolderinIdahothatarebeingaskedfortheiropiniononlivinglifeonyourowntermsuntiltheend-of-life.Answeringthissurveygivesyouachancetotellusaboutyourvalues,prioritiesandconcerns.AsimilarsurveywasconductedinIdahoin2006andithasalsoadministeredinseveralotherstatesandnumerouscommunitiesaroundthecountry.Thepurposeofthiseffortistoupdatetheinformation.Theresultswillbeusedtodevelopcommunityandstatewideprogramsaddressing issuessuchaspainmanagement,accesstoservicesandfamily support at the end-of-life. Information from the Idaho surveywillmake it possible to tailor programs tospecificneedsinIdahoandmoreeffectivelypromoteadvancedcareplanningconversationsthatwillhonoryourchoices.Pleasecompletethissurveyandreturnitinthepre-paidenvelopebyMarch15,2018.Bycompletingthesurvey,youconsenttoparticipateinthisresearchproject.Ifyouchoosetoreturntheenclosedgreenpaperattachedalongwithyourcompletedsurvey,yournamewillbeenteredinadrawingfor1of5$100.00giftcards.ThisgreenpapercardwillbeseparatedfromthesurveyuponreceiptandwillbedestroyedafterthedrawingonMarch22,2018.Ifyouchosetoparticipantintheonlinesurvey,youwillbeprovidedwithalinktoenterthedrawing.Allsurveyresponseswillbekeptcompletelyconfidentialandnoindividualresponseswillbereported.Ifyouhaveanycommentsorquestionsaboutthissurvey,pleasecontactDr.KimMartzat(208)426-3591,orDr.SarahToevsat(208)426-2452,ortheInstitutionalReviewBoardatBoiseStateUniversity,OfficeofResearchAdministration,1910UniversityDrive,Boise,ID83725-1135or(208)426-1574.Wethankyouforyourtimeandappreciateyourassistancewiththisimportantproject.KimMartz,PhD,RN SarahToevs,PhDAssociateProfessor ProfessorSchoolofNursing Director,CenterfortheStudyofAgingBoiseStateUniversity BoiseStateUniversity

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DRAWINGFORPRIZEENTRY

Please enter me in the drawing for $100.00 gift card!

Thank you for taking time to complete the Idaho Survey: Personal Preferences at End of Life. Please provide the following information to enter the drawing. *Your personal information will be kept confidential and will be used only to select the winners. This card will be destroyed after the winners are identified. Please print in the following information: Name: ________________________________________

Mailing Address: ______________________________________________ ______________________________________________

______________________________________________ Phone Number: _________________________________ Email address (if preferred for contact):_________________________________________ Link to email version of entry card: Link to drawing

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SURVEYFORMWITHFREQUENCIESOFREPONSES

IdahoSurvey:PersonalPreferencesatEnd-of-life

This survey is about lifeonyourown terms. It includesquestionsaboutyourattitudes,beliefsandexperiences concerning topics that may be sensitive. Your responses will help us gain a betterunderstandingofwhatisimportanttopeopleinIdahowhentheythinkabouthowtheywanttoliveuntiltheendoftheir life.Thesurveyshouldtakeonly20minutes.Wewouldreallyappreciateyourparticipation.

Foreachsurveyitembelow,ü checktheboxthatbestrepresentsyouropinionorexperience.

ThoughtsaboutDeathandDying

1. Thinkingbackonyourchildhood,howoftenweredeathanddyingtalkedaboutinyourfamily?

r Often8.4%r Occasionally41.2%r Rarely38.4%r Never10.5%r Can’tremember1.3%

2. Howcomfortableareyouwith…

Verycomfortable

Somewhatcomfortable

Notverycomfortable

Notatallcomfortable

Notsure

a. Talkingaboutdeathwithfamily r51.3% r36.3% r9.7% r2.5% r0.1%

b. Takingaboutdeathwithfriends r44.8% r38.3% r11.3% r3.3% r2.2%

c. Writingyourownwillconcerninghealthcaredecisions

r54.5% r29.8% r11.8% r2.7% r1.1%

d. Appointingahealthcareagenttoactforyouifyouwereunabletospeakorwrite

r49.6% r28.0% r14.3% r5.4% r2.3%

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2. Howlikelyareyouto… Verylikely Somewhat

likelyNotverylikely

Notatalllikely

Notsure

a. Attendfuneralsormemorialservices

r47.4% r37.7% r12.4% r2.3% r0.3%

b. Readbooks,newspaperarticlesorotherinformationthatdealwiththesubjectofdeathanddying

r27.8% r42.8% r19.9% r9.3% r0.3%

c. Watchtelevisionprogramsormoviesthatdealwiththesubjectofdeathanddying

r25.6% r43.6% r23.7% r6.6% r0.6%

d. Avoidmedicalcheckupsbecauseyouareafraidthedoctorwillfind“somethingserious”

r3.0% r9.4% r26.5% r60.8% r0.3%

e. Usealternativemedicinesuchasmassage,acupuncture,music,exercise,relaxation,etc.

r34.9% r33.0% r17.2% r14.0% r0.9%

f. Speakfreelytolovedonesaboutdeathanddying

r45.5% r38.6% r13.7% r1.6% r0.5%

g. Visitortelephoneafriendorrelativewhohasrecentlylostalovedoneinordertoseehowtheyaredoing

r47.5% r38.0% r10.7% r2.5% r1.3%

h. Preplanyourownfuneral r37.3% r33.6% r17.7% r9.0% r2.4%

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3. Howafraid,ifatall,areyouof… Very

afraidSomewhatafraid

Notveryafraid

Notatallafraid

Notsure

a. Dying r3.8% r30.2% r35.6% r28.4% r2.0%

b. Dyingfromalong-termillness r21.4% r49.5% r19.0% r8.1% r1.9%

c. Dyingsuddenly r5.4% r19.6% r34.8% r39.3% r1.0%

d. Dyingalone r10.7% r31.6% r31.0% r23.3% r3.4.%

e. Dyinginaninstitutionsuchasanursinghomeorhospital

r24.8% r35.5% r22.6% r14.8% r2.3%

f. Dyingpainfully r37.9% r38.7% r17.4% r3.3% r2.7%

4. Howstronglydoyouagreeordisagreethat…

Stronglyagree

Somewhatagree

Somewhatdisagree

Stronglydisagree

Notsure

a. Deathisanimportantpartoflife r67.2% r27.1% r1.8% r1.2% r2.7%

b. You would want to know if you had aseriousillness

r68.7% r24.9% r2.5% r1.3% r2.6%

c. Youwouldwanttoknowifyouonlyhadafewmonthstolive

r74.% r17.9% r4.3% r1.0% r2.7%

d. Caring for people who are dying is arewardingexperience

r30.6% r36.8% r15.0% r4.9% r10.4%

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5. Whenyouthinkaboutdeathanddying,howconcernedareyouthat…

7. Whichofthefollowinghealthconditions,ifany,doyouthinkareworsethandeath?CheckALLthatapply.r Livingwithgreatpain68.4%

r Totalphysicaldependencyonothers,suchasbeinginacoma83.3%

r Notbeingabletocommunicatemywishesand/orneedstofamilyandfriends68.8%

r Severementaldeteriorationorseverememoryloss81.2%

r Nothingisworsethandeath2.1%

Veryconcerned

Somewhatconcerned

Notveryconcerned

Notatallconcerned

Notsure

a. Your(oryourspouse/partner's)moneywon’tlast

r27.2% r38.8% r22.6% r10.4% r1.0%

b. Yourfamily’smoneywon'tlast r25.4% r34.6% r24.6% r11.1% r1.9%

c. Youwillbeafinancialburdentoyourfamilyorfriends

r29.8% r29.8% r25.5% r14.3% r1.0%

d. Youwillexperienceafinancialburdenpayingformedicineormedicalcare

r34.2% r37.6% r15.9% r11.6% r0.7%

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AdvancePlanningandPreparation

AdvanceDirectivesallowpeopletomaketheirhealthcarechoicesknowninadvanceofanincapacitatingillness,life-threateningconditionordeath.

8. Whichofthefollowingadvancedirectivesandotherpre-planshaveyouheardaboutandcompleted?

Haveheardaboutandcompleted

Haveheardaboutbutnotcompleted

Havenotheardabout

a. Ahealthcareagentordurablepowerofattorneyforhealthcareinwhichyounamesomeonetomakedecisionsaboutyourhealthcareintheeventyouareunabletospeak

r39.5% r54.8% r4.3%

b. Alivingwillorotherwritteninstructionsinwhichyoustatethekindofhealthcareyouwantordon’twantundercertaincircumstances

r45.0% r54.7% r0.3%

c. APOSTdocument(physicianordersspecifyinglife-sustainingmeasuresyoudoordonotwantforfuturehealthcaretreatments)

r26.8% r48.6% r22.7%

d. Alastwillandtestamentthatcontrolshowyourmoneyandotherpropertyaretobedistributed

r45.0% r54.3% r0.6%

e. Funeralorburialpre-plansinwhichyouplanorpurchaseinadvanceanygoodsorservicesforyourself

r13.6% r83.3% r3.1%

f. Authorizationtohaveyourorgansand/ortissuedonatedafteryoudieforusebyothersinneedoftransplants

r68.2% r28.5% r1.1%

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9. Whetheryouhavecompletedanyadvancedirectives/pre-plansornot,withwhomhaveyoutalkedaboutyourwishesforcareneartheendofyourlife?CheckALLthatapply.r Spouse/partner72.8% r MDspecialists,suchas:cardiologist,oncologist,

palliativemedicine4.1%r Family63.%

r Friends25.7% r Mentalhealthprofessional,suchas:socialworker,psychologist,orpsychiatrist1.1%

r Clergy/spiritualleader4.% r Noone9.4%

r Lawyer/EstatePlanner15.1%

r Primarycarephysician9.4% r Other(Pleasespecify):2.3%

r Nurse0.2%

10. Whowouldyouwanttoinitiateaconversationregardingend-of-lifeissues?CheckALLthatapply.

r Spouse/partner75.6% r MDspecialists,suchas:cardiologist,oncologist,

palliativemedicine24.7%r Family78.7%


r Clergy/spiritualleader17.9% r Noone3.6%

r Lawyer/EstatePlanner21%


r Nurse6.9%

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11. Whowouldyoutrusttoprovideinformationonend-of-lifeissues?CheckALLthatapply.

r Spouse/partner68.4% r MDspecialists,suchas:cardiologist,oncologist,palliativemedicine35.4%

r Family68.6%


r Clergy/spiritualleader21.1% r Noone2.0%

r Lawyer/EstatePlanner31.1%


r Nurse10.1%

DealingwithDying

12. Howimportantwouldeachofthefollowingbetoyouwhendealingwithyourowndying?

Veryimportant

Somewhatimportant

Notveryimportant

Notatallimportant

Notsure

a. Family/friendsvisitingyou r68.6% r23.3% r4.6% r1.7% r0.7%

b. Beingabletostayinyourhome r61.8% r30.2% r6.1% r1.0% r0.9%

c. Honestanswersfromyourdoctor r95.4% r2.8% r0.5% r1.1% r02%

d. Presenceofspiritualleader r34.8% r28.5% r20.2% r12.3% r2.0%

e. Knowingmedicinewasavailable toyou

r70.0% r23.9% r4.7% r0.3% r1.2%

f. Planningyourownfuneral r262% r39.2% r24.1% r9.3% r1.3%

g. BeingabletocompleteaLastWillandTestament

r66.2% r266% r5.5% r0.7% r0.9%

h. Fulfillingpersonalgoals/pleasures r43.1% r36.2% r16.3% r3.3% r1.0%

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i. Reviewingyourlifehistorywithyourfamily

r28.7% r40.4% r23.0% r6.9% r1.0%

j. Havinggoodrelationshipswithyourhealthcareproviders

r58.0% r33.7% r5.6% r2.3% r0.4%

k. Gettingyourfinancesinorder r67.0% r26.3% r4.2% r0.9% r0.1%

l. Understandingyourtreatmentoptions

r84.0% r14.6% r1.3% r0.1% r0.1%

m. Choosingyourtreatmentoptions r85.2% r12.0% r2.6% r0.1% r0.1%

n. Sharingwithothersyourtime,gifts,orwisdom

r47.9% r35.7% r11.2% r2.8% r0.9%

o. Havinggoodpainmanagementavailable

r72.7% r23.2% r3.7% r0.1% r0.3%

13. Howimportantiseachofthefollowingtoyouwhenyouthinkaboutdying? Very

importantSomewhatimportant

Notveryimportant

Notatallimportant

Notsure

a. Beingphysicallycomfortable r68.3% r29.5% r1.7% r0.4% r0.1%

b. Beingfreefrompain r60.1% r35.2% r4.4% r0.1% r0.2%

c. Beingoffartificiallife-sustainingsupport(suchasventilatororCPR)

r62.4% r23.9% r7.1% r2.5% r4.0%

d. Notreceivingartificialnutrition/hydration

r41.6% r32.6% r14.4% r4.6% r7.0%

e. Beingabletobalancealertnessandpainmanagement

r63.2% r33.7% r2.1% r0.3% r0.6%

f. Havingrelationshipissuessettledwithmyfamily

r70.1% r18.5% r7.7% r2.7% r1.1%

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g. Beingatpeacespiritually r72.0% r16.6% r5.9% r4.1% r1.4%

h. Notbeingaphysicalburdentolovedones

r79.1% r17.9% r2.3% r0.2% r0.6%

i. Knowinghowtosaygoodbye r64.1% r27.7% r4.8% r2.3% r1.1%

j. Havingasenseofyourownworth

r58.0% r28.2% r7.9% r3.7%r2.2%

14. Doyouconsideryourself…r Veryreligious/spiritual39.6%r Somewhatreligious/spiritual41.0%r Notveryreligious/spiritual10.8% r Notatallreligious/spiritual8.6%

15. Howdoesyourspiritualpractice/religionaffectyourend-of-lifedecisionmaking?

r Toagreatextent40.3%r Somewhat28.5%r Notmuch16.9%r Notatall14.4%

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16. Ifyouwereterminallyillandcouldchoosewheretodie,wherewouldyouMOSTwanttobe?CheckONEansweronly.

r Inyourownhome85.1% r Inanursinghome0.4%

r Inanassistedlivingfacility3.6% rInaresidentialhospice(hospiceservicesprovidedbyahospiceownedfacility)5.0%

r Inahospital2.7% r Other:3.2%

17. Haveyouheardofhospiceservices?

r Ihaveneverheardofhospiceservice.2.2%IFNEVER,SKIPTOQUESTION21

r Ihaveheardalittleabouthospiceservices.33.5%

r Ihaveheardalotabouthospiceservices.64.3%

18. Howdidyoulearnabouthospiceservices?CheckALLthatapply.r Iknowsomeonewhousedhospiceservices.72.0% r Iheardfromahealthcareprofessional.18.8%

r Ihaveusedhospiceservicesmyself.9.6% r Ireadliterature/newspaper/TV/radio/othermedia.20.3%

r Iam/wasahospicevolunteer.3.6% r Iheardfromothers.34.1%

Hospice is a program that provides care for people during the last 6 months of life. Hospice services can be provided in a person’s home, their hospital room, long-term care or in a separate hospice facility.

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19. Wouldyouconsiderusinghospicesupport?r Yes83.6%

r No2.9% IFNO,SKIPTOQUESTION21

r Don’tknow/notsure10.0%

20. Wherewouldyouwanttoreceivehospicesupport?CheckALLthatapply.\

r Inahospiceresidence21.0% r Inaresidentialfacilitysuchasassistedliving211%

r Inahospital11.8% r Inmyownhome86.3%

r Inanursinghome10.9%

21. AreyouawarethatMedicareandMedicaidpayforhospiceservices?

r Yes56.7%

r No26.8%

r Notsure16.5%

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22. Belowaresomestatements related topainnear theend-of-life.Howstronglydoyouagreeordisagreewitheachstatement?

Stronglyagree

Somewhatagree

Somewhatdisagree

Stronglydisagree

Notsure

a. Iwantinformationaboutoptionsformanagingmypain.

r83.7% r14.2% r0.8% r0.1% r1.2%

b.Iwouldtakepainmedicinetomanagemypain.

r73.2% r24.1% r1.0% r0.1% r1.6%

c. Iwouldonlytakepainmedicineswhenthepainissevere.

r43.5% r38.0% r10.0% r5.1% r1.5%

d.IamafraidIwillbecomeaddictedtothepainmedicinesovertime.

r14.8% r27.3% r28.0% r26.3% r3.6%

e. Iwouldtakethelowestamountofmedicinepossibletosavelargerdosesforlaterwhenthepainisworse.

r43.1% r36.5% r10.2% r6.3% r3.6%

f. IamafraidIwouldbegiventoomuchpainmedicine.

r11.0% r27.3% r33.0% r22.9% r4.1%

g. Iamworriedpainmedicationwillmakemeconfused,“outofit”orloseconsciousness.

r15.8% r43.2% r27.1% r10.6% r3.3%

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SupportfromOthers

23. Whenpeopleareneartheend-of-life,theymayneedsupportfromothers.Whichofthefollowingtypesofsupportdoyouexpecttoneedwhenneartheendofyourlife,andwhoshouldprovideittoyou?

a. ListenwhenItalk

rYes97.9%

rNo2.1%

IfYES,whoshouldprovidethistypeofsupport?

CheckALLthatapply.

r

Spouse/partner81.1% r Communityorganizations7.0%

r

Childrenandotherfamily87.6% r Healthproviders50.1%

r

Paidcaregivers43.6% r Faithcommunity27.2%

r Friends/neighbors41.5%

b. Providetransportation

rYes97.8%

rNo2.2%

IfYES,whoshouldprovidethistypeofsupport?

CheckALLthatapply.

r Spouse/partner77.7% r Communityorganizations15.6%

r

Childrenandotherfamily83.8% r Healthproviders168%

r

Paidcaregivers43.2% r Faithcommunity17.1%


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c. Helpwithchores

rYes96.0% IfYES,whoshouldprovidethistypeofsupport?CheckALLthatapply.

rNo4.0% r Spouse/partner71.8% r Communityorganizations10.4%

r Childrenandotherfamily78.4% r Healthproviders8.1%

r Paidcaregivers52.3% r Faithcommunity19.9%


d. KnowwhatIwantwhenIdie



r Childrenandotherfamily88.3% r Healthproviders32.3%



e. EncouragemewhenIamdown



r Childrenandotherfamily838% r Healthproviders29.7%



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f. Knowaboutmyillness



r Childrenandotherfamily87.0% r Healthproviders557%



AboutYouThe following questions are for classification purposes only and will be kept entirelyconfidential.

24. Ingeneral,howwouldyourateyourownhealthrightnow?r Excellenthealth18.0% r Fairhealth12.5%

r Verygoodhealth34.4% r Poorhealth2.4%

r Goodhealth32.5%

25. Doyouhaveaseriouschronicillness? rYes20.0% rNo80.0%

26. Areyoucurrentlycoveredbyanyhealthcareinsuranceorprogramincludinginsurancethroughwork/retirement, themilitary,Medicare,Medicaidor someothergovernmentprogram?

r Yes93.1%

r No6.5%

r Notsure0.5%

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27. In the last 12months, abouthowmuchdid you spendeachmonth outof yourownpocketforinsuranceanddoctorvisits?

r Lessthan$50permonth29.9% r $500morepermonth13.3%

r $50tolessthan$200permonth30.2% r Notsure2.1%

r $200tolessthan$500permonth23.4%

28. In the last 12months, abouthowmuchdid you spendeachmonth outof yourownpocketforprescriptiondrugs?

r Lessthan$50permonth70.3% r $500morepermonth0.9%

r $50tolessthan$200permonth22.5% r Notsure1.1%

r $200tolessthan$500permonth5.2%

29. Doesanyothermemberofyourhouseholdhaveaseriouschronicillness?

r Yes16.7% Ifyes,areyouincurringcostsfor:CheckALLthatapply.

rCaregiversorhomehealthaides1.1%

rMedicines12.4%

rInsurance10.6%

rTransportationand/orparkingforappointments5.4%

rLostwagesformissingtimeatyourwork3.1%

r No83.3%

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30. Whowouldyouasktofindoutwhetherend-of-lifecareservicesarecoveredbyinsurance,Medicare,Medicaid?CheckALLthatapply.Iwouldcontact

r SHIBA-SeniorHealthInsuranceAdvisorsProgram11.5% r Medicaid20.6%

r AreaAgencyonAging11.3% r Medicare39.5%

r Localhomecareagency7.8% r Myfriends/neighbors17.2%

r Localseniorcenter/councilonaging8.6% r Myrelatives25.3%

r Mydoctor52.5% r Myemployer17.7%

r Myhealthplan72.8% r Socialworker12.4%

r Other(pleasespecify):5.1%

31. MedicarenowpaysforAdvanceCarePlanningconversations.Ifyouareovertheageof65,inthepastyear,hasyourhealthcareproviderdiscussedAdvanceCarePlanningwithyou?

r Yes16%*(n=400)

r No83%*

*n=400(numberofrespondentsovertheageof65)

32.Whatisyoursex?

rMale40.6%rFemale57%

33.Whatwasyourageatyourlastbirthday?_______________(inyears)

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34.Doyoulivealone?rYes18.9% rNo76.8%

35.Whatisyourcurrentmaritalstatus?

r Single,nevermarried4.5% r Separated0.2%

r Married70.6% r Divorced9.2%

r Livingwithapartner3.0% r Widowed10.2%

36. Whatisthehighestlevelofeducationthatyoucompleted?

r Lessthanhighschool1.5% r Collegegraduate(4years)23.9%

r Highschoolgraduateorequivalent13.1%

r Post-graduateorprofessionaldegree18.9%

r Somecollegeortechnicaltrainingbeyondhighschool40.1%

37. Whichofthefollowingbestdescribesyourcurrentemploymentstatus?

r Employedorself-employedfull-time34.0% r Other,suchashomemaker5.7%

r Employedorself-employedpart-time11.9% r Unemployedandlookingforwork1.1%

r Retiredandnotworking45.1%

38.AreyouHispanicorLatino?rYes1.5% rNo94.6%

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39.Whichoneormoreofthefollowingwouldyousayisyourrace?CheckALLthatapply

r White94.1% r Don’tknow/notsure0.8%

r BlackorAfricanAmerican0.1% r Other1.6%

r Asian1.0% r Refused1.8%

r AmericanIndianorAlaskanNative2.1%

40.Inwhatlanguagedoyouprefertoreadordiscussinformationrelatedtodeathanddying?

r English97.2%

r Spanish0.2%

r Other(pleasespecify):0.4%

41.Whatwasyourannualhouseholdincomebeforetaxesin2017?

r Lessthan$10,0002.5% r $40,000tounder$50,00011.7%

r $10,000tounder$20,0007.0% r $50,000tounder$60,0009.6%

r $20,000tounder$30,0008.3% r $60,000tounder$75,00012.7%

r $30,000tounder$40,0009.4% r $75,000ormore33.9%

42.AreyouaUnitedStatesVeteran? rYes17.2%rNo81%

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43.Areyouaffiliatedwithanorganizedfaithcommunity?

r Yes53.3%Ifso,whichdenomination? r No44.9%

44.Whatisyour5-digitzipcode?(WRITEINYOURZIPCODE)____________________

TheMissionoftheCenterfortheStudyofAgingatBoiseStateUniversityistopromotethewellbeingofIdaho’sgrowingpopulationofoldercitizens.Formoreinformationvisit:

https://hs.boisestate.edu/csa/

Thankyouforcompletingthesurvey!

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APPENDIXC–EOLPREFERENCESINFOGRAPHIC

64

REFERENCESiU.S.CensusBureau.ProfileofGeneralPopulationandHousingCharacteristics:2010.https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=CF

iiU.S.CensusBureau.ProfileofGeneralPopulationandHousingCharacteristics:2010.https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=CF

iiiU.S.CensusBureau.2-16AmericanCommunitySurvey,1-yearestimates.https://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_16_1YR_S0201&prodType=table

ivU.S.CensusBureau.IdahoQuickFacts.July1,2017;https://www.census.gov/quickfacts/fact/table/id/PST045217.AccessedJuly2,2018.

vTheConversationProject,http://theconversationproject.org/about/.ThefindingisfromTheConversationProjectNationalSurvey,2018.

viICN909289.(2017,December04).Retrievedfromhttps://www.cms.gov/Outreach-and-Education/Medicare-Learning-Network-MLN/MLNProducts/MLN-Publications-Items/ICN909289.html

viihttps://healthandwelfare.idaho.gov/Portals/0/Medical/EMS/Idaho_POST_HCP_and_EMS_Personnel_FAQs-%20July_2012.pdf

viiihttps://legislature.idaho.gov/statutesrules/idstat/Title39/T39CH45/SECT39-4512A/.

ixApproximatelyOneinThreeUSAdultsCompletesAnyTypeofAdvanceDirectiveforEnd-of-LifeCare.(n.d.)Retrievedfromhttps://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2017.0175

xInstituteofMedicine(U.S.).CommitteeonApproachingDeath:AddressingKeyEnd-of-LifeIssues.DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesneartheEndofLife.Washington,D.C.:TheNationalAcademiesPress;2015.

xiNationalHospiceandPalliativeCareOrganization,2018

xiiCentersforMedicare&MedicaidServices.MedicareHospiceBenefits.www.medicare.gov.https://www.medicare.gov/Pubs/pdf/02154-Medicare-Hospice-Benefits.PDF.PublishedMarch1,2018.

xiiiCaregiverStatistics:Demographics.FamilyCaregiverAlliance:NationalCenteronCaregiving.https://www.caregiver.org/caregiver-statistics-demographics.AccessedSeptember22,2018.

xivCaregiverStatistics:Demographics.FamilyCaregiverAlliance:NationalCenteronCaregiving.https://www.caregiver.org/caregiver-statistics-demographics.AccessedSeptember22,2018.

xvLife'sEndInstitute.AnInterviewwithChristinaPuchalski,MD.Thyme.VolSpring;2005:1.

xvihttp://www.nationalacademies.org/hmd/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx

xviiMorrisonRS.ModelsofpalliativecaredeliveryintheUnitedStates.Currentopinioninsupportiveandpalliativecare.2013;7(2):201-206.doi:10.1097/SPC.0b013e32836103e5.xviiihttps://ihcca.clubexpress.com/

idaho survey: personal preferences at end-of-life...the 2018 personal preferences at end-of-life...

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