MappingPaliativeCareinNHSurvey-2017

Transkript

1 MappingPaliativeCareinNHSurvey-2017 Preparedby: SeanP.McKinley,M.A. TracyKeirns,Ph.D. TheSurveyCenter UniversityofNew Hampshire June,2017

2 TheUniversityofNewHampshire SurveyCenter TheUNHSurveyCenterisanindependent,non-par san academicsurveyresearchorganiza onanddivisionof theunhcolegeofliberalarts. TheSurveyCenterconductstelephone,mail,web,and interceptsurveys,aswelasfocusgroupsandother qualita veresearchforuniversityresearchers, governmentagencies,publicnon-profitorganiza ons, privatebusinesesandmediaclients. Ourseniorstaffhaveover50yearsexperiencein designingandconduc ngcustom researchonabroad rangeofpoli cal,social,healthcare,andotherpublic policyisues. Dr.AndrewE.Smith,Director UNHSurveyCenter 9MadburyRoad,Suite402 Durham,NewHampshire

3 TableofContents Execu vesummary.1 KeyFindings.1 DemographicProfile.2 AboutYourOrganiza on.3 YourOrganiza on'spalia veservices.3 CostRecovery.14 StaffandReten on.16 Pala vecareinforma on.17 AppendixA:Open-EndedResponses.22 AppendixB:SurveyInstrument.31

4 ExecutiveSummary TheUniversityofNewHampshireSurveyCenterconductedasurveyfortheQualityofLifeTaskForceoftheNHComprehensive CancerColabora on(nhccc)andnhhospiceandpalia vecareorganiza on(nhhpco)tounderstandthecurent landscapeofpalia vecareservicesinthestate,howpa entsaccespalia vecareservices,andtoiden fybarierstocareand whatcanbedonetoremovethosebariers.an invita ontocompletetheinternetsurveywassenttoonehundredand thirty-six(136)healthprovidersonmay4,2017andreminder sweresentonmay10,may17,andmay24,2017.overal, seventy-one(71)careprovidersrespondedtothesurvey,withforty-six(46)fulycomple ngthesurvey,yieldingacompleted responserateof3.thefolowingfiguresdisplaysurveyresults,appendixacontainstheopen-endedresponses,and AppendixBcontainsthesurveyinstrument. KeyFindings Nearlyhalfofrespondents'organiza onsperform fewerthan10palia vecareini alorfolow-upconsultspermonthon averageand18%saytheydonotprovidepalia vecareconsultsatal. Afargreaterpropor onofpa entsadmi ed/treatedorreferedtopalia vecarebycancercentersthanbyother organiza onshavebeendiagnosedwithcancer,whilealargerpropor onofpa entsadmi ed/treatedorreferedto palia vecarebyltc-nursinghomesthanbyotherorganiza onshavebeendiagnosedwithdemen a. Three-quartersormoreofrespondentssaytheirorganiza onhasaphysician,nurseprac oner,andpastoral/spiritual careprovideraspartoftheirpalia vecareteam butlesthanaquartersaytheyhavestaffintheseposi onsdedicated onlyforpalia vecare.veryfewrespondentsreporttheirorganiza onhasoutsidecontractedstaffforanyoftheposi ons inthepalia vecareteam. Respondentsreportphysicians,nurseprac oners,andregisterednursesarethepeoplewhomostfrequentlyconduct ini alpalia vecareasesments.justoverhalfofphysicianswhoconducttheseasesmentsareboardcer fiedin HospiceandPalia vecare(h&pc)whilejustoverathirdofnurseprac onersare,butveryfewregisterednurseswho conducttheseasesmentsareh&pccer fied. Respondentsbelievestaffintheirorganiza onaremostlikelytobeconcernedwhenorderingpalia vecareservicesabout upse ngthepa entandfamily,theirabilitytoprovideout-pa entservice,orthefinancialburdenonthepa entand/or theprogram.athirdofrespondentssaytheystaffhavenoconcerns. Morethanhalfofrespondentssaytheycoverthecostoftheirpalia vecareservicesthroughclaimssubmision.lesthan one-fi hsaytheyemploycostavoidance,philanthropy,grants,oranothermeansforcoveringcosts. Nearlyalrespondentsagreethatprivateinsuranceprovidersneedtobeeducatedaboutpalia vecareservices. Respondents'organiza onsmostfrequentlyconveyinforma ononpalia vecarethroughprintedmaterialsorverbaly. Rela velyfewuseinternetlinks,audio/visualmaterial,oranothermedium. MostrespondentsareunawareofeachofthepocketcardsdevelopedbyNHCCC/NHHPOCPalia vecaretoolkititemsand only20%orlesofrespondentshaveusedthem. Lesthanaquarterofrespondentsa endedtosentstafftoa endeitherthenhhpcopalia vecarebilingworkshopor thenhhpcohospiceandpalia vecarern/lnacer fica onprepara onworkshop. Thevastmajorityofrespondents(80%)prefertoreceiveupdatesforbestprac cesofpalia vecarevia overany othermedium.

5 DemographicProfileofRespondents InstitutionType LTC-NursingHomes 51% Hospice CancerCenters 15% Hospitals 15% PCPrivatePractice 1% Region Central/Lakes 25% HilsboroughCounty 25% NorthernNH 21% Seacoast 26% WesternNH 3% AverageNumberofConsultsPerMonth(Initial&Folow-Up) Morethan50consultsper month 10to50consultsper month Fewerthan10consultsper month Noconsultsprovided 16% 16% 18% 45% Don'tknow

6 AboutYourOrganization Nearlyhalfofrespondents(46%)describetheirorganiza onasanursing/skiled/longterm carefacility,saytheyarea home-basedhospice&palia vecareprogram,11%saytheyareahospital-basedpalia vecareprogram,9%describe themselvesasacancercenter,anddescribethemselvesinanotherway. Figure1:Whichofthefolowingbestdescribesyourorganization? Nursing/Skiled/LongTerm CareFacility Home-basedHospice&PaliativeCareprogram Hospital-basedPaliativeCareprogram CancerCenter 9% 11% 46% YourOrganization'sPaliativeCareServices 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Eighteenpercentsaytheirorganiza ononaverageprovidesmorethan50ini alconsultspermonth,9%saytheirorganiza on provides10to50permonth,39%saytheirorganiza onprovidesfewerthan10consultspermonth,27%saytheirorganiza on doesnotprovideanyini alconsultsatal,and7%don'tknoworareunsure. Figure2:Onaverage,how manyinitialpaliativecareconsultsdoesyourprogram providepermonth?initial Consults 18% 9% Fewerthan10consultspermonth 39% Noconsultsprovided 27% Don'tknow 7% Eightpercentofrespondentssaytheirorganiza onprovidesmorethan50folow-upconsultspermonth,20%saytheir organiza onprovides10to50permonth,half(50%)saytheirorganiza onprovidesfewerthan10consultspermonth,18% saytheirorganiza onprovidesnofolow-upconsultsatal,and5%don'tknoworareunsure. Figure3:Onaverage,how manyfolow-uppaliativecareconsultsdoesyourprogram providepermonth? Folow-upvisits 8% 20% Fewerthan10consultspermonth 50% Noconsultsprovided 18% Don'tknow 5%

7 Morethantwo-thirds(69%)ofrespondentssaytheirorganiza onusesspecificcriteriatoiden fypa entsinneedofpalia ve carewhohavebeendiagnosedwithcancer.sixty-onepercentusespecificcriteriaforthosediagnosedwithlungdisease,60% forthosediagnosedwithheartdisease,55%forthosewithrenaldisease,and5forthosewithdemen a.thirty-three percentofrespondentssaytheirorganiza onusesspecificcriteriaforthosediagnosedwithanothercondi on. Figure4a:Doesyourorganizationusespecificcriteriatoidentifypatientsinneedofpaliativecarewiththe folowingdiagnoses? Cancer 69% 31% Lungdisease Heartdisease Renaldisease Dementia 61% 60% 55% 5 39% 40% 45% 46% 33% 67% Yes No Respondentswhoseorganiza onisacancercenterandthosewhoprovidefewerthan10consultspermontharemore likelythanotherstousespecificcriteriatoiden fypa entswithacancerdiagnosisinneedofpalia vecare,whilethose whoseorganiza onislocatedinnorthernnhareleslikelytodoso. Respondentswhoseorganiza onisacancercenteraremorelikelythanotherstousespecificcriteriatoiden fypa ents withalungdiseasediagnosisinneedofpalia vecare,whilethosewhoseorganiza onislocatedinnorthernnhareles likelytodoso. Respondentswhoseorganiza onislocatedinthecentral/lakesregionandthosewhoseorganiza onisaltc-nursing homearemorelikelythanotherstousespecificcriteriatoiden fypa entswithademen adiagnosisinneedofpalia ve care. Figure4b:Doesyourorganizationusespecificcriteriatoidentifypatientsinneedofpaliativecarewiththe folowingdiagnoses?-bydemographics Cancer CancerCenters Fewerthan10consultspermonth NorthernNH 46% 69% 82% Lungdisease CancerCenters NorthernNH 46% 61% 80% Demen a Central/Lakes LTC-NursingHomes 5 67% 66%

8 Respondentsonaveragees matethat33%ofthepa entsadmi edtoortreatedattheirorganiza onannualyhavebeen diagnosedwithdemen a,26%havecancer,15%havelungdisease,15%haveheartdisease,6%haverenalfailure,and5% haveanotherdisease. Figure5a:Approximatelywhatpercentageofpatientsadmittedto/treatedatyourorganizationannualy haveeachofthefolowingconditions?-average 33% 26% 15% 15% 6% 5% Dementia Cancer Lungdisease Heartdisease Renalfailure Respondentswhoseorganiza onisaltc-nursinghomereportagreaterpercentageofpa entsadmi edortreatedat theirorganiza onhavebeendiagnosedwithdemen a,whilethosewhoseorganiza onprovidesmorethan50consults permonthandthosewhoseorganiza onislocatedinthecentral/lakesregionreportasmalerpropor onoftheir pa entshavethisdiagnosis. Respondentswhoseorganiza onisacancercenterreportagreaterpercentageofpa entsadmi edortreatedatthe organiza onhavebeendiagnosedwithcancer.thosewhoseorganiza onisaltc-nursinghomereportasmaler propor onoftheirpa entshavethisdiagnosis. Figure5b:PercentageofPatientsAdmitted/TreatedtoOrganizationWithCondition-Averageby Demographics Demen a LTC-NursingHomes Central/Lakes Cancer 19% 33% 50% CancerCenters LTC-NursingHomes 12% 26% 7

9 Respondentsonaveragees matethat22%ofthepa entsreferedtopalia vecareannualyhavebeendiagnosedwith demen a,3havecancer,havelungdisease,11%haveheartdisease,7%haverenalfailure,andhaveanother disease. Figure6a:Approximatelywhatpercentageofpatientsreferredtopaliativecareannualyhaveeachofthe folowingconditions?-average 22% 3 11% 7% Dementia Cancer Lungdisease Heartdisease Renalfailure Respondentswhoseorganiza onisaltc-nursinghomereportagreaterpercentageofpa entsreferedtopalia vecare annualyhavebeendiagnosedwithdemen a. Respondentswhoseorganiza onisacancercenterreportagreaterpercentageofpa entsreferedtopalia vecare annualyhavebeendiagnosedwithcancer. Figure6b:PercentageofPatientsReferredtoPaliativeCareWithCondition-AveragebyDemographics Demen a LTC-NursingHomes 22% 35% Cancer CancerCenters 3 81%

10 Eighty-twopercentofrespondentssaythatunmanagedpainorasymptom triggersapalia vecareconsultintheir organiza on,7sayaconsultistriggeredbyapa entorfamilyrequest,58%byarehospitaliza on,42%byaneedfor AdvancedCarePlanning,and32%byanotheroccurance. Figure7a:Whattriggersapaliativecareconsultinyourorganization?(Selectalthatapply) Unmanagedpain/symptom 82% Patient/familyrequest 7 Rehospitialization 58% NeedforAdvancedCarePlanning 42% 32% Respondentswhoseorganiza onprovidesmorethan50consultspermonthandthosewhoseorganiza onisacancer centerorahospitalaremorelikelythanotherstosayanunmanagedpainorsymptom triggersapalia vecareconsultin theirorganiza on. Respondentswhoseorganiza onprovidesmorethan10consultspermonth,thosewhoseorganiza onislocatedinthe Central/Lakesregion,andthosewhoseorganiza onisahospitalaremorelikelythanotherstosayapa entorfamily requesttriggersapalia vecareconsultintheirorganiza on.thosewhoseorganiza onprovidesfewerthan10consults permonthareleslikelytosayso. Respondentswhoseorganiza onisahospitalandthosewhoseorganiza onprovidesmorethan50consultspermonthare morelikelythanotherstosayrehospitaliza ontriggersapalia vecareconsultintheirorganiza on.thosewhose organiza onislocatedinhilsboroughcountyandthosewhoseorganiza onisaltc-nursinghomeareleslikelytosay so. Figure7b:TriggersforPaliativeCareConsultinOrganization-byDemographics Unmanagedpain/symptom CancerCenters Hospitals 82% Pa ent/familyrequest Central/Lakes Hospitals Fewerthan10consultspermonth Rehospitaliza on 62% 7 86% 90% 90% Hospitals HilsboroughCounty LTC-NursingHomes 43% 46% 58%

11 Eighty-threepercentofrespondentssayaphysicianispartofthepalia vecareteam intheirorganiza on,includeanurse prac oner,75%includeapastoral/spiritualcareprovider,73%includearegisterednurse(rn),69%includeanadministra ve supportemployee,56%includeasocialworkermsw,48%includeasocialworkerlicsw,42%includeasocialworkerbsw, 21%includeanintegratedtherapiesprac oner,and4includeanemployeeinanotherrole. Figure8a:Whichofthefolowingpositionsmakeupthepaliativecareteam inyourorganization? Physician NursePractitioner Pastoral/Spiritualcareprovider Registerednurse(RN) AdministrativeSupport Socialworker,MSW Socialworker,LICSW Socialworker,BSW IntegratedTherapiespractitioner 21% 56% 48% 42% 4 83% 75% 73% 69% 79% 4 52% 58% 56% 23% 25% 27% 31% Yes No Respondentswhoseorganiza onprovidesmorethan50consultspermonthandthosewhoseorganiza onisahospitalare morelikelythanotherstoincludeanurseprac onerontheirpalia vecareteam. Respondentswhoseorganiza onprovidesaremorelikelythanotherstoincludearegistered nurseontheirpalia vecareteam. Respondentswhoseorganiza onislocatedinhilsboroughcountyandthosewhoseorganiza onprovidesmorethan50 consultspermontharemorelikelythanotherstoincludeadministra vesupportontheirpalia vecareteam. Figure8b:PositionsonPaliativeCareTeam -bydemographics Nurseprac oner Hospitals Registerednurse(RN) 73% 90% Administra vesupport HilsboroughCounty 69% 88% 90%

12 Twenty-threepercentofrespondentssaytheirorganiza onhasaregisterednurse(rn)dedicatedtopalia vecare,20%havea dedicatednurseprac oner,15%haveadedicatedphysician,havededicatedadministra vesupport,andhavea dedicatedsocialworkerbsw.elevenpercentofrespondenthaveasocialworkermsw dedicatedtopalia vecare,10%havea dedicatedpastoralorspiritualcareprovider,8%haveadedicatedsocialworkerlicsw,1%haveadedicatedintegrated Therapiesprac oner,andhaveanothertypeofdedicatedemployeeaspartortheirpalia vecareteam. Thirty-onepercentofrespondentssaytheirorganiza onhasaphysicianontheirpalia vecareteam sharedwithother departments,21%haveasharedregisterednurse(rn),21%haveasharednurseprac oner,20%haveashared pastoral/spiritualcareprovider,18%havesharedadministra vesupport,15%haveasharedsocialworkermsw,havea sharedsocialworkerbsw,haveasharedsocialworkerlicsw,6%haveasharedintegratedtherapiesprac oner,and6% haveanothertypeofsharedemployeeaspartoftheirpalia vecareteam. Thirteenpercentofrespondentssaytheirorganiza onhasapastoral/spiritualcareproviderontheirpaliaitvecareteam who isoutsidecontracted,11%haveanoutsidecontractedphysician,8%haveanoutsidecontractedregisterednurse(rn),7%have anoutsidecontractednurseprac oner,7%haveanoutsidecontractedsocialworkerlicsw,haveanoutsidecontracted IntegratedTherapiesprac oner,haveanoutsidecontractedsocialworkermsw,3%haveoutsidecontracted administra vesupport,and1%haveanothertypeofoutsidecontractedemployeeaspartoftheirpalia vecareteam. Figure9a:Whichofthefolowingpositionsmakeupthepaliativecareteam inyourorganizationandistheir positiondedicatedtopaliativecare?(selectalthatapply) Registered nurse(rn) Dedicated Shared 23% 21% Nurse practitioner OutsideContracted Dedicated Shared 8% 20% 21% Physician OutsideContracted Dedicated 7% 15% Shared 31% Administrative Support OutsideContracted Dedicated Shared 11% 18% Socialworker, BSW Socialworker, MSW OutsideContracted Dedicated Shared Dedicated Shared 3% 11% 15% Pastoral/ Spiritualcare provider Socialworker, LICSW OutsideContracted Dedicated Shared OutsideContracted Dedicated Shared 10% 8% 20% Integrated Therapies practitioner OutsideContracted Dedicated Shared OutsideContracted Dedicated 1% 7% 6% Shared 6% OutsideContracted 1% 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%

13 Respondentswhoseorganiza onprovidesaremorelikelythanotherstohaveadedicated registerednurseontheirpalia vecareteam. Respondentswhoseorganiza onprovidesmorethan50consultspermonthandthosewhoseorganiza onislocatedin HilsboroughCountyaremorelikelythanotherstohaveadedicatednurseprac onerontheirpalia vecareteam. Respondentswhoseorganiza onprovidesmorethan50consultspermonthandthosewhoseorganiza onislocatedin HilsboroughCountyaremorelikelythanotherstohaveadedicatedphysicianontheirpalia vecareteam. Figure9b:PositionsDedicatedtoPaliativeCare-byDemographics Registerednurse(RN) Nurseprac oner 23% 46% HilsboroughCounty Physician 20% 55% 53% HilsboroughCounty 15% 36% 35%

14 Morethanhalf(53%)ofrespondentssaythatintheirorganiza onphysicianswhoareboardcer fiedinhospiceandpalia ve Care(H&PC)providetheini alasesmentofpa entsreferedforpalia vecare,22%saynon-cer fiedphysiciansperform this func on,and25%sayphysiciansdonotprovideini alpalia vecareasesmentsintheirorganiza on.thirty-sevenpercent sayboardcer fiednurseprac onersprovideini alpalia vecareasesmentsintheirorganiza on,37%saynon-cer fied nurseprac onersprovideini alasesments,and26%saynurseprac onersdonotprovideini alasesments.twenty-nine percentsayboardcer fiedregisterednursesprovideini alpalia vecareasesmentsintheirorganiza on,5say non-cer fiedregisterednursesprovideini alasesments,andsayregisterednursesdonotprovideini alasesments. SeventypercentormoreofrespondentssaysocialworkersBSW (7),socialworkersMSW (75%),socialworkersLICSW (77%), otheremployees(),pastoral/spiritualcareproviders(79%),orintegratedtherapiesprac oners(91%)donotprovide ini alpalia vecareasesmentsintheirorganiza on. Figure10a:WhoprovidestheinitialassessmentofpatientsreferredforpaliativecareandaretheyBoard CertifiedinHospiceandPaliativeCare(H&PC)? Physician 53% 22% 25% Nursepractitioner 37% 37% 26% Registerednurse(RN) 29% 5 Socialworker,LICSW 19% 77% 11% 11% Socialworker,MSW 8% 75% Pastoral/Spiritualcareprovider 8% 79% IntegratedTherapiespractitioner 9% 91% Socialworker,BSW 26% 7 Doesnotprovideinitialassessments Providesinitialassessment-NotBoardCertifiedinH&PC Providesinitialassessment-IsBoardCertifiedinH&PC Respondentswhoseorganiza onisahospitalandthosewhoseorganiza onprovidesmorethan50consultspermonthare morelikelythanotherstosayboardcer fiedphysiciansprovideini alasesmentsattheirorganiza on. Respondentswhoseorganiza onislocatedinhilsboroughcountyaremorelikelythanotherstosayboardcer fiednurse prac onersprovideini alasesmentsattheirorganiza on. Figure10b:BoardCertifiedEmployeesProvidingInitialAssessment-byDemographics Physician Hospitals 86% 53% Nurseprac oner HilsboroughCounty 37% 6

15 Whenaskedaboutconcernsstaffintheirorganiza onmighthaveaboutorderingpalia vecareservices,30%ofrespondents men onafearofupse ngthepa entandfamily,22%eachciteconcernovertheabilitytoprovideout-pa entservicesora lackoffolowupinanout-pa entse ng,15%areconcernedaboutthefinancialburdenonthepa entand/ortheprogram, andareconcernedwithrespecttoproviderboundaries.fi eenpercentciteanotherconcernand33%saytheirstaffhave noconcernsorderingpalia vecareservices. Figure11:What,ifany,aretheconcernsofstafinyourorganizationaboutorderingpaliativecareservices? (Selectalthatapply) Fearofupsettingthepatientandfamily 30% Abilitytoprovideout-patientservices Lackoffolow upinout-patientsetting 22% 22% Concernaboutfinancialburdenonpatientand/orprogram Concernwithrespecttoproviderboundaries 15% 15% NoneoftheAbove 33% 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Sixty-fivepercentofrespondentssaytheirorganiza onsupportsthoseprovidingpalia vecareservicesthroughapartnership withcommunityhospiceservicesorproviders,50%provideadvancedcareplanningini a ves,46%provideinternaleduca on opportun es,43%providededicatedstaff,26%providefloa ngstafffrom otherdepartments,26%payforexternaleduca on opportuni es,anddosomethingelse. Figure12a:How doesyourorganizationsupportthoseprovidingpaliativecareservices?(selectalthat apply) Partnershipwithcommunityhospiceservices/provider Advancedcareplanninginitiatives Internaleducationopportunities Providingdedicatedstaf Providingfloatingstaffrom otherdepartments Payingforexternaleducationopportunities 26% 26% 46% 43% 50% 65% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Respondentswhoseorganiza onisahospiceoracancercenterareleslikelythanotherstosaytheirorganiza on supportsthoseprovidingpalia vecareservicesthroughapartnershipwithcommunityhospiceservices/provider. Respondentswhoseorganiza onprovidesandthosewhoseorganiza onisanltc-nursing homearemorelikelythanotherstosaytheirorganiza onsupportsthoseprovidingpalia vecareservicesthrough advancedcareplanningini a ves. Figure12b:OrganizationalSupportforPaliativeCareServices-byDemographics Partnershipwithcommunityhospiceservices/provider Hospice CancerCenters 29% 36% 65% Advancedcareplanningini a ves LTC-NursingHomes 50% 70% 89%

16 Thirty-sixpercentofrespondentssaytheirorganiza ontracksqualitymeasuresrelatedtopalia vecare.fortypercentsay theydonottrackthesemeasuresand2don'tknoworareunsure. Figure13a:Isyourorganizationtrackingqualitymeasuresrelatedtopaliativecare? 36% 40% 2 Yes No Don'tknow/Notsure Respondentswhoseorganiza onprovidesmorethan50consultspermontharemorelikelythanotherstosaytheir organiza ontracksqualitymeasuresrelatedtopalia vecare. Figure13b:OrganizationTrackingPaliativeCareQualityMeasures-byDemographics Yes 36% 67% Morethanhalf(56%)ofrespondentssaytheirorganiza onoffersin-serviceprogramstoincreasestaffawarenesoreduca on aboutpalia vecareatleasttwice(16%)oratleastonceperyear(40%).ninepercentofferprogramsatleastonceeveryother year,11%dosolesthaneverytwoyears,9%donotoffertheseprogramsatal,and16%haveanotherarangementfor in-serviceprograms. Figure14a:How oftendoesyourorganizationoferin-serviceprogramstoincreasestaf awareness/educationaboutpaliativecare? 16% 40% 9% 11% 9% 16% Atleasttwiceayear Alleastonceayear Atleastonceeveryotheryear Lessthaneverytwoyears Notofered Respondentswhoseorganiza onprovidesmorethan50consultspermontharemorelikelythanotherstosaytheir organiza onoffersin-serviceprogramstoincreasestaffawarenes/educa onaboutpalia vecareatleastonceoratleast twiceperyear. Figure14b:FrequencyO feringin-serviceawareness/educationprograms-bydemographics "Atleastonceayear"or"Atleasttwiceayear" 56% 89%

17 CostRecovery Morethanhalf(52%)ofrespondentssaytheycoverthecostoftheirpalia vecareservicesthroughclaimssubmision, employcostavoidance,15%usephilanthropy,7%usegrants,and28%useanothermeansforcoveringcosts. Figure15a:How doyoucoverthecostofyourpaliativecareservices?(selectalthatapply) Claimssubmission Costavoidance Philanthropy Grants 7% 15% 28% 52% Claimssubmision Respondentswhoseorganiza onprovidesmorethan10consultspermonthandthosewhoseorganiza onisahospitalare morelikelythanotherstocoverthecostoftheirpalia vecareservicesthroughclaimssubmision. Figure15b:MeansCoveringPaliativeCareCosts-byDemographics Hospitals 52% 86% Forty-onepercentofrespondentssaytheirorganiza onbilsforaphysicianconsult,35%bilforanaprnconsult,15%bilfor socialworkerservices,bilforanadvancedcareplanningconversa on,bilforshareddecisionmaking,and22%bilfor anotherservice. Figure16a:Forwhichofthefolowingpaliativecareservicesdoesyouorganizationbil?(Selectalthat apply) PhysicianConsult APRNConsult SocialWorkerServices AdvancedCarePlanningConversation SharedDecisionMaking 15% 22% 35% 41% Respondentswhoseorganiza onprovidesmorethan50consultspermontharemorelikelythanotherstobilfora physicianconsult. Respondentswhoseorganiza onprovidesmorethan50consultspermontharemorelikelythanotherstobilforanaprn consult. Figure16b:ServicesBiledbyOrganization-byDemographics PhysicianConsult 41% APRNConsult 35%

18 Nearlythree-quarters(73%)ofrespondentsstronglyagreethatprivateinsuranceprovidersneedtobeeducatedabout palia vecareservices,somewhatagreewiththisstatement,andneitheragreenordisagree.norespondents somewhatorstronglydisagreewiththisstatement. Figure17:Pleaseindicatetheextenttowhichyouagreewiththefolowingstatement:Privateinsurance providersneedtobeeducatedaboutpaliativecareservices 73% StronglyAgree SomewhatAgree NeitherAgreenorDisagree SomewhatDisagree StronglyDisagree Forty-onepercentofrespondentssaytheirorganiza onexperiencesproblemswithreimbursementforservices,26%have problemswiththeirstaffingexpense,22%citealackofadministra onsupport,20%haveanotherfunding-relatedchalenge,. Figure18a:Whichofthefolowingchalengesrelatedtothefundingpaliativecareservicesdoesyour organizationexperience?(selectalthatapply) Reimbursementforservices 41% Stafingexpense 26% Lackofadministrationsupport 20% 22% Myorganizationhasnochalengeswithfunding 28% Figure18b:PaliativeCareFundingChalenges-byDemographics 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% Respondentswhoseorganiza onprovidesmorethan50consultspermonthandthosewhoseorganiza onisahospiceare morelikelythanotherstosaytheyhaveproblemswithreimbursementforservices. Respondentswhoseorganiza onisaltc-nursinghomearemorelikelythanotherstosaytheirorganiza onhasno chalengeswithfunding. Reimbursementforservices Hospice 41% 73% Myorganiza onhasnochalengeswithfunding LTC-NursingHomes 28% 60%

19 StafandRetention Morethanone-third(35%)ofrespondentssaytheirorganiza onexperienceschalengeswithfindingstaffwithrelatedwork experience,20%facechalengeswithalackofcompe vecompensa on,citechalengeswithburnout,26%citeanother staff-relatedchalenge,and2saytheyfacenochalengesfinding,training,andretainingqualifiedpalia vecarestaff. Figure19a:Whichofthefolowingchalengesdoesyouorganizationexperiencerelatedtofinding,training, andretainingqualifiedpaliativecarestaf?(selectalthatapply) Relatedworkexperience 35% Lackofcompetitivecompensation 20% Burnout 26% Myorganizationhasnochalengeswithstaf 2 Figure19b:PaliativeCareStafingChalenges-byDemographics Respondentswhoseorganiza onprovidesandthosewhoseorganiza onisahospiceare morelikelythanotherstosaytheirorganiza onexperienceschalengeswithfindingstaffwithrelatedworkexperience. Relatedworkexperience Hospice 35% 55%

20 PaliativeCareInformation Threeinfiverespondents(61%)provideinforma ononpalia vecaretopa entswhencura vecareisnolongerindicated, 52%provideinforma onwhenthepa enthasuncontrolablesymptoms,52%whenthepa enthasachangeincondi on,46% whenapa entisreferedtoahospice,37%atthe meofaterminaldiagnosis,atfirstcontact,15%atthebeginningof treatment,andatthe meofacancerdiagnosis.fourpercentofrespondentssaytheydonotprovideinforma onand sayinforma onisprovidedatanotherperiod. Figure20a:Whenispaliativecareinformationgiventopatients?(Selectalthatapply) Whencurativecareisnolongerindicated Whenthereareuncontrolablesymptoms Changeincondition Hospicereferral Atthetimeofaterminaldiagnosis Atfirstcontact Beginningoftreatment Atthetimeofacancerdiagnosis Noinformationisgiven 15% 37% 46% 52% 52% 61% Respondentswhoseorganiza onisacancercenteraremorelikelythanotherstosaytheirorganiza ongivesinforma on aboutpalia vecaretopa entswhenthepa enthasuncontrolablesymptoms. Respondentswhoseorganiza onisacancercenterandthosewhoseorganiza onprovidesmorethan50consultsper montharemorelikelythanotherstosaytheirorganiza ongivesinforma onaboutpalia vecaretopa entswhenthe pa enthasachangeincondi on. Respondentswhoseorganiza onislocatedinnorthernnharemorelikelythanotherstosaytheirorganiza ongives informa onaboutpalia vecarewhenthepa entisreferedtoahospice. Figure20b:WhenPaliativeCareInformationGiventoPatients-byDemographics Whenthereareuncontrolablesymptoms CancerCenters Changeincondi on CancerCenters Hospicereferal 52% 52% 67% 86% 86% NorthernNH 46% 80%

21 Morethanthree-quarters(79%)ofrespondentsprovideinforma onaboutpalia vecareservicesdirectedtowardseduca ng non-cancerpa entsinneedofpalia vecareservices,whileprovidesuchinforma ondirectedtowardcancerpa ents. Morethanhalf(58%)providethisinforma ondirectedtowardsfamilymembersinneedofpalia vecareservices,whilevery few(9%)providesuchinforma ondirectedtowardschildreninneedofpalia vecareservices. Figure21a:Doesyourorganizationprovideinformationaboutpaliativecareservicesdirectedtoward educatingeachofthefolowinggroups. Non-cancerpatientsinneedof paliativecareservices 79% 1 7% Cancerpatients 16% 7% Familymembersinneedof paliativecareservices 58% 35% 7% Childreninneedofpaliativecare services 9% 79% 12% Respondentswhoseorganiza onisahospitalandthosewhoseorganiza onprovidesmorethan50consultspermonthare morelikelythanotherstosaytheirorganiza onprovidesinforma onaboutpalia vecaredirectedtowardseduca ng non-cancerpa entsinneedofpalia vecareservices. Respondentswhoseorganiza onisahospitaloracancercenterandthosewhoseorganiza onprovidesmorethan50 consultspermontharemorelikelythanotherstosaytheirorganiza onprovidesinforma onaboutpalia vecaredirected towardscancerpa ents.thosewhoseorganiza onisaltc-nursinghomeareleslikelytoprovidethiskindof informa on. Respondentswhoseorganiza onprovidesmorethan10consultspermonthandthosewhoorganiza onisacancercenter aremorelikelythanotherstosaytheirorganiza onprovidesinforma onaboutpalia vecaredirectedtowardseduca ng familymembersinneedofpalia vecareservice. Figure21b:OrganizationProvidesInformationDirectedTowardsFolowingGroups-byDemographics Non-cancerpa entsinneedofpalia vecareservices Yes No Don'tknow Hospitals 79% Cancerpa ents Hospitals CancerCenters LTC-NursingHomes 60% Familymembersinneedofpalia vecareservices CancerCenters 58%

22 Eighty-threepercentofrespondentsreporttheirorganiza onprovidesprintedinforma onforadvancecareplanning,70% provideprintedinforma onforgeneralinforma onaboutpalia vecare,57%forpainandsymptom management,50%for psychosocialandemo onalaspectsofadvanceddisease,and43%forthespiritualaspectsofadvanceddisease. Eighty-ninepercentofrespondentsreporttheirorganiza onprovidesverbalinforma onaboutpsychosocialandemo onal aspectsofadvanceddisease,89%dosoforpainandsymptom management,85%dosoforgeneralinforma onaboutpalia ve care,dosoforspiritualaspectsofadvanceddisease,anddosoforadvancecareplanning. Rela velyfewrespondentsprovideinforma onaboutpalia vecareisuesviainternetlinksorthroughaudio/visual informa on.asmalnumberofrespondentssaytheirorganiza onsdonotofferinforma onontheseisues,thelargestbeing spiritualaspectsofadvancedage,informa onforwhichisnotprovidedinanymedium byofrespondents. Figure22:How doesyourorganizationoferinformationtopatientsonthefolowingissues?(selectalthat apply) Advancecareplanning Printedinformation 83% Verbalygiveninformation Giveninternetlinks Givenaudio/visualinformation 11% Doesnotofer Generalinformationabout Printedinformation paliativecare Verbalygiveninformation 2% 70% 85% Giveninternetlinks 15% Givenaudio/visualinformation Painandsymptom managment Doesnotofer Printedinformation Verbalygiveninformation 2% 57% 89% Giveninternetlinks Givenaudio/visualinformation Psychosocialand emotionalaspectsof advanceddisease Doesnotofer Printedinformation Verbalygiveninformation Giveninternetlinks 2% 50% 89% Givenaudio/visualinformation 2% Spiritualaspectsof advanceddisease Doesnotofer Printedinformation Verbalygiveninformation 2% 43% Giveninternetlinks 7% Givenaudio/visualinformation 2% Doesnotofer

23 SixtypercentormoreofrespondentssaytheyareunawareofeachofthepocketcardsdevelopedbyNHCCC/NHHPOC Palia vecaretoolkititems.seventeenpercenthaveusedhospicecriteriapocketcardsand22%haveseenthem butnotused them,20%haveusedopioiddosageguidelinepocketcardsand18%haveseenthem,16%haveusedand16%haveseen non-pharmacologicalpainmanagementrackcards,and9%haveusedandhaveseenspiritualdistrespocketcards. Figure23a:HaveyouusedorseenanyofthefolowingpocketcardsdevelopedbyNHCCC/NHHPCOPaliative CareToolkititems? Hospicecriteriapocketcards 22% 61% Opioiddosageguidelinepocket cards 20% 18% 62% Non-pharmacologicalpain magagementrackcards 16% 16% 69% Spiritualdistresspocketcards 9% 16% 75% Used Seen Didn'tknow aboutit Respondentswhoseorganiza onprovidesandthosewhoseorganiza onisahospiceare morelikelythanotherstosaytheyhaveusedorseenhospicecriteriapocketcards. Respondentswhoseorganiza onisahospiceorahospitalandthosewhoseorganiza onprovides10to50consultsper montharemorelikelythanotherstosaytheyhaveusedorseenopioiddosageguidelinepocketcards. Figure23b:UsedorSeenAnyoftheFolowingPocketCards-byDemographics Hospicecriteriapocketcards Hospice 73% 39% Opioiddosageguidelinepocketcards Hospice 73% 67% Hospitals 67% 38%

24 Twenty-twopercentofrespondentssaytheya endedorsentstafftoa endthenhhpcopalia vecarebilingworkshop, while49%saytheydidnotand29%wereunawareoftheevent.thesamepropor onofrespondentssaytheya endedorsent stafftoa endthenhhpcohospiceandpalia vecarern/lnacer fica onprepara onworkshop. Figure24a:Haveyouattendedorsentstaftoanyofthefolowingworkshops? NHHPCOPaliativeCareBilingWorkshop 22% 49% 29% NHHPCOHospiceandPaliativeCareRN/LNA Certificationpreparationworkshop 22% 49% 29% NHHPCOPalia vecarebilingworkshop Yes No Didn'tknow aboutit Respondentswhoseorganiza onisahospice,thosewhoseorganiza onprovidesmorethan50consultspermonth,and thosewhoseorganiza onislocatedinthecentral/lakesregionaremorelikelythanotherstosaytheya endedorsent stafftoa endthenhhpcopalia vecarebilingworkshop. Respondentswhoseorganiza onisahospiceandthosewhoseorganiza onprovidesare morelikelythanotherstosaytheya endedorsentstafftoa endthenhhpcohospiceandpalia vecarern/lna Cer fica onprepara onworkshop. Figure24b:AttendedorSentStaftoFolowingWorkshops-byDemographics Hospice 55% 4 Central/Lakes 4 22% NHHPCOHospiceandPalia vecarern/lnacer fica onprepara onworkshop Hospice 22% 56% 60% Thevastmajorityofrespondents(80%)prefertoreceiveupdatesforbestprac cesofpalia vecarevia .sevenpercent preferanewsle er,awebsite,2%mail,2%amee ngorconference,andwouldprefertoreceiveupdatesinanother way. Figure25:How doyouprefertoreceiveupdatesforbestpracticesofpaliativecare? 80% Newsletter Website Mail Meeting/Conference 7% 2% 2%