untitled attachment 00006 - pioneer network...3 the pioneer network is a growing coalition of...

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Introduction

Foodanddiningrequirementsarecorecomponentsofqualityoflifeandqualityofcarein

nursinghomes.Researchalsoshowsthat:

50%‐70%ofresidentsleave25%ormoreoftheirfooduneatenatmostmealsandbothchartdocumentationofpercenteatenandtheMDSarenotoriouslyinaccurate,consistentlyrepresentingagrossunder‐estimateoflowintake.1,2

60%‐80%ofresidentshaveaphysicianordietitianordertoreceivedietarysupplements.3

25%ofresidentsexperiencedweightlosswhenresearchstaffconductedstandardizedweighingproceduresovertime.4,5

TheAmericanDieteticAssociation(ADA)reportsthatunder‐nutritionadverselyaffectsthequalityandlengthoflife,andtherefore,hasarousedtheconcernofgeriatrichealthprofessionals.Theprevalenceofproteinenergyunder‐nutritionforresidentsrangesfrom23%to85%,makingmalnutritiononeofthemostseriousproblemsfacinghealthprofessionalsinlongtermcare.Malnutritionisassociatedwithpooroutcomesandisanindicatorofriskforincreasedmortality.Ithasbeenfoundthatmostresidentswithevidenceofmalnutritionwereonrestricteddietsthatmightdiscouragenutrientintake.6

CMSnotesthatthemostfrequentquestionsandconcernsreceivedbytheirstafffocusonthe

physicalenvironmentanddining/foodpoliciesinnursinghomes.Therefore,in2010the

PioneerNetworkandCMSheldtheirsecondco‐sponsorednationalsymposiumCreatingHome

IINationalSymposiumonCultureChangeandtheFoodandDiningRequirements,sponsored

bytheHuldaB.&MauriceL.RothschildFoundation.TheSymposiumbroughttogetherawide

diversityofstakeholders,includingnursinghomestaff,regulators,providerleadership,

researchers,registereddietitians,vendors,andadvocatesforculturechange.

1SimmonsSF&ReubenD.(2000).Nutritionalintakemonitoringfornursinghomeresidents:Acomparisonofstaffdocumentation,directobservation,andphotographymethods.JournaloftheAmericanGeriatricsSociety,48(2):209‐213.2SimmonsSF,LimB&SchnelleJF.(2002).AccuracyofMinimumDataSetinidentifyingresidentsatriskforundernutrition:Oralintakeandfoodcomplaints.JournaloftheAmericanMedicalDirectors’Association,3(May/June):140‐145.3SimmonsSF&PatelAV.(2006).Nursinghomestaffdeliveryoforalliquidnutritionalsupplementstoresidentsatriskforunintentionalweightloss.JournaloftheAmericanGeriatricsSociety,54(9):1372‐1376.4SimmonsSF,GarciaET,CadoganMP,Al‐SamarraiNR,Levy‐StormsLF,OsterweilD&SchnelleJF.(2003).TheMinimumDataSetweightlossqualityindicator:Doesitreflectdifferencesincareprocessesrelatedtoweightloss?JournaloftheAmericanGeriatricsSociety51(10):1410‐1418.5SimmonsSF,PetersonE&YouC.(2009).Theaccuracyofmonthlyweightassessmentsinnursinghomes:Implicationsfortheidentificationofweightloss.JournalofNutrition,Health&Aging,13(3):284‐288.6ADAPositionPaperLiberalizationoftheDietPrescriptionImprovesQualityofLifeforOlderAdultsinLong‐TermCare2005.

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ThePioneerNetworkisagrowingcoalitionoforganizationsandindividualsfromacrossthe

nation,changingthecultureofagingandlongtermcare.PioneerNetworkisdedicatedto

makingfundamentalchangesinvaluesandpracticestocreateacultureofagingthatislife‐

affirming,satisfying,humaneandmeaningful.Itadvocatesforpublicpolicychange,creates

communication,networkingandlearningopportunities;buildsandsupportsrelationshipsand

community;identifiesandpromotestransformationinpractice,services,publicpolicyand

research;developsandprovidesaccesstoresourcesandleadership;andhostsanational

conferencetobringtogetherinterestedpartieswithadesiretopropelthisimportantwork.

TheHuldaB.&MauriceL.RothschildFoundationistheonlynationalphilanthropyexclusively

focusedonimprovingthequalityoflifeforeldersinnursinghomesthroughouttheUnited

States.Oneofitskeystrategiesistoworktogetherwithsignificantstakeholdersinorderto

modifyexistingregulations,suchthattheybettersupportnewmodelsofaginginlongterm

care.Currently,theFoundationhasinitiatedandissupportinganumberofsuchefforts:

• TheNationalLifeSafetyTaskForceconvenedbyPioneerNetworkthathasrevisions

pendingtotheNationalLifeSafetyCode.

• TheCenterforHealthDesignexpertpanelthatisdevelopingrecommendationsforthe

guidelineswhichgoverntheDesignandConstructionofHealthcareFacilities.

• TheAmericanInstituteofArchitectsDesignforAgingCommunitythatisdraftinga

ProposalforChangestoAccessibilityStandardsforNursingHome&AssistedLiving

ResidentsinToiletingandBathingundertheAmericanswithDisabilitiesAct.

• Atthespecificrequestoftheregulatorycommunity,theFoundationhassupportedthe

UniversityofMinnesotainbuildingafreewebsite,NHRegsPlus,whichprovidesa

cross‐indexedcompendiumofallstatenursinghomeregulations.

Foodanddiningareanintegralpartofindividualizedcareandself‐directedlivingforseveralreasons,including:(1)thecomplexityoffoodanddiningrequirementswhenadvancingmodelsofculturechange;(2)theimportanceoffoodanddiningasasignificantelementofdailyliving,and(3)themostfrequentquestionsandconcernsCMSreceivesfromregulatorsandprovidersconsistentlyfocusondiningandfoodpoliciesinnursinghomes.Therefore,webelievethisareaisonemostinneedofnationaldialogueifwearetoimprovequalityoflifeforpersonslivinginnursinghomeswhilemaintainingsafetyandqualityofcare.

Inordertogatherinputfromthemanykeystakeholders,theCreatingHomeIINationalSymposiumontheFoodandDiningRequirementsandCultureChangewasco‐sponsoredbyPioneerNetworkandCMS,incollaborationwiththeAmericanHealthCareAssociation.Asetofresearchpaperswerecommissionedwithawidevarietyofexpertsaswellasaseriesofwebinars,hostedbyCarmenBowmanundercontractwithCMS,andallwerepostedonline.Thisprocessallowedmanymembersofinterestedorganizations,associations,regulatory

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departments,andotherstoparticipate.TheHuldaB.&MauriceL.RothschildFoundationsupportedaStakeholderWorkshoponMay14,2010thatwasattendedby83nationalleaders,whichreviewedthefeedbackfromallstakeholders,expertspeakersandindividualparticipants.TwoofthenumerousrecommendationsattheCreatingHomeIIsymposiumforfutureconsiderationwere:

Nationalstakeholderworkgroupdevelopguidelinesforclinicalbestpracticeforindividualizationinlongtermcarelivingtoprovideregulatoryoverviewandinterpretiveprotocolandinvestigativeguidance,andpreparerelatededucationmaterialstofacilitateimplementation.Eachprofessionservingeldersinlong‐termcaredevelopanddisseminatestandardsofpracticefortheirprofessionalaccountabilitythataddressespropertraining,competencyassessment,andtheirroleasanactiveadvocateforresidentrightsandresidentqualityoflifefromawellnessperspectiveinadditiontoqualityofcarefromamedicalperspective.

TheserecommendationswereacteduponatleastinpartthankstothegenerousfundingoftheHuldaB.andMauriceL.RothschildFoundationtothePioneerNetworkin2011byformingtheFoodandDiningClinicalStandardsTaskForce.TheFoodandDiningClinicalStandardsTaskForceiscomprisedofsymposiumexperts,representativesfromCentersforMedicareandMedicaidServicesDivisionofNursingHomes,theUSFoodandDrugAdministrationandtheCentersforDiseaseControlandPreventionaswellasnationalstandardsettinggroups.

TheFoodandDiningClinicalStandardsTaskForcemadeasignificantefforttoobtainevidenceandthustheNewDiningPracticeStandardsdocumentreflectsevidence‐basedresearchavailableto‐date.Thedocumentalsoreflectscurrentthinkingandconsensuswhichareinadvanceofresearch.ThereforetheCurrentThinkingportionsofeachsectionoftheNewDiningPracticeStandardsdocumentrepresentalistofrecommendedfutureresearch.

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GOALSTATEMENT:Establishnationallyagreeduponnewstandardsofpracticesupportingindividualizedcareandself‐directedlivingversustraditionaldiagnosis‐focusedtreatment.

OrganizationsAgreeingtotheNewDiningPracticeStandards• AmericanAssociationforLongTermCareNursing(AALTCN)• AmericanAssociationofNurseAssessmentCoordination(AANAC)• AmericanDieteticAssociation(ADA)• AmericanMedicalDirectorsAssociation(AMDA)• AmericanOccupationalTherapyAssociation(AOTA)• AmericanSocietyofConsultantPharmacists(ASCP)• AmericanSpeech‐Language‐HearingAssociation(ASHA)• DietaryManagersAssociation(DMA)• GerontologicalAdvancedPracticeNursesAssociation(GAPNA)• HartfordInstituteforGeriatricNursing(HIGN)• NationalAssociationofDirectorsofNursingAdministration

inLongTermCare(NADONA/LTC)• NationalGerontologicalNursingAssociation(NGNA)

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Notetoreader:Regulardietisreferredtoofteninthisdocument.RegulardietisdefinedaswhatshouldbepreparedandofferedtomeetnutritionalneedsinaccordancewiththecurrentrecommendeddietaryallowancesoftheFoodandNutritionBoardoftheNationalResearchCouncil,NationalAcademyofSciences,usedasastandardmealplanningguidewhileresidentshavetherighttomakechoices.Wheneverphysicianisreferredtointhisdocument,itisrecognizedthatmedicalcaremaybedeliveredbyaphysician,oranursepractitioner,oraphysicianassistantunderthedirectionofaphysicianinaccordancewithstatelicensurelaw.BorrowingfromCMSinterpretiveguidanceandprobelanguageatTagF280andTagF281:

TagF280:

“Interdisciplinary”meansthatprofessionaldisciplines,asappropriate,willworktogethertoprovidethegreatestbenefittotheresident.Thephysicianmustparticipateaspartoftheinterdisciplinaryteam,andmayarrangewiththefacilityalternatemethodsotherthanattendanceatcareplanningconferences,ofprovidinghis/herinput,suchasone‐on‐onediscussionsandconferencecalls.

Someinterdisciplinaryprofessionaldisciplinesincludetheoccupationaltherapist,dietitianandspeechtherapistastheProbesatTagF280indicate:

Wasinterdisciplinaryexpertiseutilizedtodevelopaplantoimprovetheresident’sfunctionalabilities?

a. Forexample,didanoccupationaltherapistdesignneededadaptiveequipmentoraspeechtherapistprovidetechniquestoimproveswallowingability?

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b. Dothedietitianandspeechtherapistdetermine,forexample,theoptimumtexturesandconsistencyfortheresident’sfoodthatprovidebothanutritionallyadequatedietandeffectivelyuseoropharyngealcapabilitiesoftheresident?

c. Isthereevidenceofphysicianinvolvementindevelopmentofthecareplan

(e.g.,presenceatcareplanmeetings,conversationswithteammembersconcerningthecareplan,conferencecalls)?

TagF281:

“Professionalstandardsofquality”meansservicesthatareprovidedaccordingtoacceptedstandardsofclinicalpractice.Standardsmayapplytocareprovidedbyaparticularclinicaldisciplineorinaspecificclinicalsituationorsetting.Standardsregardingqualitycarepracticesmaybepublishedbyaprofessionalorganization,licensingboard,accreditationbodyorotherregulatoryagency.Recommendedpracticestoachievedesiredresidentoutcomesmayalsobefoundinclinicalliterature.Possiblereferencesourcesforstandardsofpracticeinclude:

•Currentmanualsortextbooksonnursing,socialwork,physicaltherapy,etc.•StandardspublishedbyprofessionalorganizationssuchastheAmericanDieteticAssociation,AmericanMedicalAssociation,AmericanMedicalDirectorsAssociation,AmericanNursesAssociation,NationalAssociationofActivityProfessionals,NationalAssociationofSocialWork,etc.•ClinicalpracticeguidelinespublishedbytheAgencyofHealthCarePolicyandResearch.•Currentprofessionaljournalarticles.

Similarly,whenever“interdisciplinaryteam”isreferredtointhisdocument,itcanandisrecommendedthatitincludeextendedtechnical,support,andadministrativeteammemberssuchasCertifiedNursingAssistants,(CNAs),PatientCareTechnicians(PCTs),directorsoffoodservice(includingCertifiedDietaryManagers(CDMs)&DieteticTechnicians,Registered(DTRs),cooks,housekeepers,andcrosstrained/blendedworkers.

Thisdocumentcomprisesnumerousquotationsfrommanyprofessionalorganizations,thusavarietyofnomenclatureisused.Therehasbeennoefforttoeditorstandardizethenomenclaturereferringtopeoplewholiveinlongtermcaresettings,e.g.elders,residents,clients,patientsortodescribewheretheylive,e.g.facilities,nursinghomes,homesandcommunities.

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Contents

StandardofPracticeregardingIndividualizedNutrition

Approaches/DietLiberalizatio ..................................................................................................9

StandardofPracticeforIndividualizedDiabetic/CalorieControlledDiet ................................13

StandardofPracticeforIndividualizedLowSodiumDiet........................................................16

StandardofPracticeforIndividualizedCardiacDiet ...............................................................19StandardofPracticeforIndividualizedAlteredConsistencyDiet............................................22

StandardofPracticeforIndividualizedTubeFeeding .............................................................27StandardofPracticeforIndividualizedRealFoodFirst ...........................................................31StandardofPracticeforIndividualizedHonoringChoices.......................................................35

StandardofPracticeforShiftingTraditional

ProfessionalControltoIndividualizedSupportofSelfDirectedLiving ....................................44

NewNegativeOutcome .........................................................................................................47PatientRightsandInformedConsent/RefusalacrosstheHealthcareContinuumMayoClinicProceedings2005................................................................................................52References .............................................................................................................................59

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StandardofPracticeforIndividualizedNutritionApproaches/DietLiberalization

BasisinCurrentThinkingandResearchAmericanMedicalDirectorsAssociation(AMDA):Weightlossiscommoninthenursinghomeandassociatedwithpoorclinicaloutcomessuchasthedevelopmentofpressureulcers,increasedriskofinfection,functionaldecline,cognitivedeclineandincreasedriskofdeath.Oneofthefrequentcausesofweightlossinthelong‐termcaresettingistherapeuticdiets.Therapeuticdietsareoftenunpalatableandpoorlytoleratedbyolderpersonsandmayleadtoweightloss.Theuseoftherapeuticdiets,includinglow‐salt,low‐fat,andsugar‐restricteddiets,shouldbeminimizedintheLTCsetting.7Attendingphysiciansareencouragedtoconsiderliberalizingdietaryrestrictions(e.g.,calorielimitation,saltrestrictions)thatarenotessentialtotheresident’swellbeing,andthatmayimpairqualityoflifeoracceptanceofdiet.8Patientsandfamilieswhohavebecomeaccustomedtodietaryrestrictionswhileathomeorintheacutecaresettingmayneedtobeeducatedaboutthischangeinthinking.Swallowingabnormalitiesarecommonbutdonotnecessarilyrequiremodifieddietandfluidtextures,especiallyiftheserestrictionsadverselyaffectfoodandfluidintake.9AmericanDieteticAssociation(ADA):ItisthepositionoftheAmericanDieteticAssociationthatthequalityoflifeandnutritionalstatusofolderresidentsinlong‐termcarefacilitiesmaybeenhancedbyliberalizationofthedietprescription.Medicalnutritiontherapymustbalancemedicalneedsandindividualdesiresandmaintainqualityoflife.Therecentparadigmshiftfromrestrictiveinstitutionstovibrantcommunitiesforolderadultsrequiresdieteticsprofessionalstobeopen‐mindedwhenassessingrisksversusbenefitsoftherapeuticdiets,especiallyforfrailolderadults.Foodisanessentialcomponentofqualityoflife;anunacceptableorunpalatabledietcanleadtopoorfoodandfluidintake,resultinginweightlossandundernutritionandaspiralofnegativehealtheffects.10Althoughlimitedevidencesupportingamedicalizeddietinselectolderadultsdoesexist,itisalsoimportanttonotethatthesedietsareoftenlesspalatableandpoorlytoleratedandcanleadtoweightloss.Weightlossisafargreaterconcerntotheoftenfrailnursinghomeresident

7AmericanMedicalDirectorsAssociationClinicalPracticeGuideline:AlteredNutritionalStatus.2009.8AMDASynopsisofFederalRegulationsintheNursingHome:ImplicationforAttendingPhysiciansandMedicalDirectors2009.9AMDAClinicalPracticeGuideline:DiabetesManagementintheLong‐TermCareSetting2008.10ADAPositionPaperLiberalizationoftheDietPrescriptionImprovesQualityofLifeforOlderAdultsinLong‐TermCare2005.

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andeasilyoutweighsthepotentialmodestbenefitsamedicalizeddietcanonlysometimesoffer.11ItisthepositionoftheAmericanDieteticAssociationthatthequalityoflifeandnutritionalstatusofolderadultsresidinginhealthcarecommunitiescanbeenhancedbyindividualizationtoless‐restrictivediets.Althoughtherapeuticdietsaredesignedtoimprovehealth,theycannegativelyaffectthevarietyandflavorofthefoodoffered.Individualsmayfindrestrictivedietsunpalatable,resultinginreducingthepleasureofeating,decreasedfoodintake,unintendedweightloss,andundernutrition–theverymaladieshealthcarepractitionersaretryingtoprevent.Incontrast,moreliberaldietsareassociatedwithincreasedfoodandbeverageintake.Formanyolderadultsresidinginhealthcarecommunities,thebenefitsofless‐restrictivedietsoutweightherisks.12CentersforMedicareandMedicaidServices(CMS):Liberalizeddietsshouldbethenorm,restricteddietsshouldbetheexception.Generallyweightstabilizationandadequatenutritionarepromotedbyservingresidentsregularorminimallyrestricteddiets.13Researchsuggeststhataliberalizeddietcanenhancethequalityoflifeandnutritionalstatusofolderadultsinlong‐termcarefacilities.Thus,itisoftenbeneficialtominimizerestrictions,consistentwitharesident’scondition,prognosis,andchoicesbeforeusingsupplementation.Itmayalsobehelpfultoprovidetheresidentstheirfoodpreferences,beforeusingsupplementation.Thispertainstonewlydevelopedmealplansaswellastothereviewofexistingdiets.Dietaryrestrictions,therapeutic(e.g.,lowfatorsodiumrestricted)diets,andmechanicallyaltereddietsmayhelpinselectsituations.Atothertimes,theymayimpairadequatenutritionandleadtofurtherdeclineinnutritionalstatus,especiallyinalreadyundernourishedorat‐riskindividuals.Whenaresidentisnoteatingwellorislosingweight,theinterdisciplinaryteammaytemporarilyabatedietaryrestrictionsandliberalizethediettoimprovetheresident’sfoodintaketotrytostabilizetheirweight.Sometimes,aresidentorresident’srepresentativedecidestodeclinemedicallyrelevantdietaryrestrictions.Insuchcircumstances,theresident,facilityandpractitionercollaboratetoidentifypertinentalternatives(CMSTagF325Nutrition).14

CurrentThinkingGiventhatmostnursinghomeresidentsareatriskformalnutritionandmayinfacthavedifferent,therapeutictargetsforbloodpressure,bloodsugarandcholesterol,aregularorliberalizeddietwhichallowsforresidentchoiceismostoftenthepreferredinitialchoice.As

11GardnerCD,CoulstonA,ChatterjeeL,RigbyA,SpillerG,FarquharJW,Theeffectofaplant‐baseddietonplasmalipidsinhypercholesterolemicadults:arandomizedtrial.InternMed.2005;142(9):725.12ADALiberalizationoftheDietPrescriptionImprovesQualityofLifeforOlderAdultsinLong‐TermCare2005.13CMSSatelliteBroadcastFromInstitutionaltoIndividualizedCare:CaseStudiesinCultureChange,PartIII,2007availablefromthePioneerNetworkhttp://www.pioneernetwork.net.14StateOperationsManualforLTCFacilities,AppendixPP,483.25(i)F325Nutrition,2008Guidance.

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withanymedicalissue,residentsshouldbemonitoredfordesiredoutcomesaswellasforpotentialadverseeffects.15Somehomeshaveactuallymadethe“regular”dietwithrangesofconsistencymodificationssuchas"pureetomechanicalsoft"theironlyavailableoption,thenhonoredtheresident'schoicetoeliminate"notrecommended"foodsfromhis/herdietbychoice,thenmonitoredhis/herclinicaloutcomesandmadechangesasnecessary.Thatbeingsaid,homeswithtransitionalcareunitsorthatserveyoungerdisabledpeoplemaychoosetoofferthemorerestrictivedietsasanoptionforlongtermhealth.16Allpersonsmovingintoanursinghomereceivearegulardietunlessthereisastrongmedicalhistoricalreasontoinitiate/continuearestricteddiet.Thosewhorequiremedicalizeddietscanbeassessedbythedietitian,physician,andifnecessarythespeechtherapistforappropriateindividualizedmodification.Thereneedstobecontinuousmonitoringoftheusageofallmedicalizeddietstoensurethattheycontinuetobemedicallyindicated,muchthesamewaytheusageofurinarycathetersorothermedicaldevicesaremonitored.Whenpotentialinterventionshavetheabilitytobothhelpandharm,suchasmedicalizeddietsandthickenedliquids,theinterventionsshouldbereviewedbytheinterdisciplinaryteaminaholisticfashionanddiscussedwiththeresidentand/ortheirfamily/POApriortotheirimplementation.Residentsand/ortheirfamilies/POAshouldbeeducatedregardingtheseinterventionsandthecareplanmonitoredforbothsafetyandeffectiveness.ThephysicianandinterdisciplinaryteamshouldtreatasymptomaticdiseasePROVIDEDitisconsistentwiththeresident’sgoalsforcare,isSUPPORTEDbytheliteratureandDOESNOTDECREASEQUALITYOFLIFE.17

RelevantResearchTrendsSeebelowforrelevantresearchtoeachspecificdiet.

15LeibleandWayne,TheRoleofthePhysician’sOrder,paperwrittenforCHII2010.16Bump,Linda.ClinicalStandardsTaskForcecommunication,2011.17LeibleandWayne,TheRoleofthePhysician’sOrder,paperwrittenforCHII2010.

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RecommendedCourseofPractice

• Dietistobedeterminedwiththepersonandinaccordancewithhis/herinformedchoices,goalsandpreferences,ratherthanexclusivelybydiagnosis.

• Assesstheconditionoftheperson.Assessandprovidetheperson'spreferredcontextandenvironmentformeals,inotherwordstheperson'spreferences,patternsandroutinesforsocialization(i.e.eatingaloneorwithothers),physicalsupport(i.e.adaptedeatingutensils,assistancewithcartons/cuttingoradaptedw/cpositioning),timingofmeals(i.e.typicalcommunityoruniquemealtimes)andpersonalmeaning/valueofthediningexperience(i.e.foronewhodoesnoteatbreakfast,breakfastisnotimportantbutperhapsanearlylunchis).Includequalityoflifemarkerssuchassatisfactionwithfood,servicereceivedduringmeals,levelofcontrolandindependence.

• Unlessamedicalconditionwarrantsarestricteddiet,considerbeginningwitharegulardietandmonitoringhowthepersondoeseatingit.

• Empowerandhonorthepersonfirst,andthewholeinterdisciplinaryteamsecond,tolookatconcernsandcreateeffectivesolutions.

• Supportself‐directionandindividualizetheplanofcare.• Ensurethatthephysicianandconsultantpharmacistareawareofresidentfoodand

diningpreferencessothatmedicationissuescanbeaddressedandcoordinatedi.e.medicationtimingandimpactonappetite.

• Monitorthepersonandhis/herconditionrelatedtotheirgoalsregardingnutritionalstatusandtheirphysical,mentalandpsychosocialwell‐being.

• Althoughapersonmayhavenotbeenabletomakedecisionsaboutcertainaspectsoftheirlife,thatdoesnotmeantheycannotmakechoicesindining.

• Whenapersonmakes“risky”decisions,theplanofcarewillbeadjustedtohonorinformedchoiceandprovidesupportsavailabletomitigatetherisks.

• Mostprofessionalcodesofethicsrequiretheprofessionaltosupporttheperson/clientinmakingtheirowndecisions,beinganactive,notpassive,participantintheircare.

• Whencaringforfraileldersthereisoftennoclearrightanswer.Possibleinterventionsoftenhavethepotentialtobothhelpandharmtheelder.Thisiswhythephysicianmustexplaintherisksandbenefitstoboththeresidentandinterdisciplinaryteam.Theinformationshouldbediscussedamongsttheteamandresident/family.Theresidentthenhastherighttomakehis/herinformedchoiceevenifitisnottofollowrecommendedmedicaladviceandtheteamsupportsthepersonandhis/herdecision,mitigatingrisksbyofferingsupport,i.e.offeringfoodsofnaturalpureedconsistencywhenonerefusesrecommendedtubefeeding.Itiswhentheteammakesdecisionsforthepersonwithoutacknowledgementbyallthatproblemsarise.Theagreeduponplanofcareshouldthenbemonitoredtomakesurethecommunityisbestmeetingtheresident'sneeds.

• Alldecisionsdefaulttotheperson.

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StandardofPracticeforIndividualizedDiabetic/CalorieControlledDietBasisinCurrentThinkingandResearchAMDA:“…intensivetreatmentofdiabetesmaynotbeappropriateforallindividualsintheLTCsetting.Toimprovequalityoflife,diagnosticandtherapeuticdecisionsshouldtakeintoaccountthepatient’scognitiveandfunctionalstatus,severityofdisease,expressedpreferences,andlifeexpectancy.”18Anindividualizedregulardietthatiswellbalancedandcontainsavarietyoffoodsandaconsistentamountofcarbohydrateshasbeenshowntobemoreeffectivethanthetypicaltreatmentofdiabetes.19ADA:Thereisnoevidencetosupportprescribingdietssuchasnoconcentratedsweetsornosugaraddedforolderadultsinlivinginhealthcarecommunities,andtheserestricteddietsarenolongerconsideredappropriate.Mostexpertsagreethatusingmedicationratherthandietarychangestocontrolbloodglucose,bloodlipidlevels,andbloodpressurecanenhancethejoyofeatingandreducetheriskofmalnutritioninolderadultsinhealthcarecommunities.20CMS:Nothingspecifictodiabeteswasfound,however,CMShasstatedmuchaboutliberalizingdiets,seeDietLiberalizationsectionaswellaseachspecificdietsection.CurrentThinkingIfapersonwithdiabeteschoosesnottoeatbreakfast,forexample,thatdecisionshouldbemadeandcommunicatedbeforeadoseofregularinsulinisadministeredinthemorning.Whileweagreethatpeopleshouldbegivenasmuchfreedomaspossibleinchoiceofdietsandfoods,itmaybemoreappropriateinmanycasestoliberalizethetreatmentgoalsortargets(suchashemoglobinA1Corcholesterol)ratherthanaddmoremedication.21Theonlybenefittoslidingscaleinsuliniswithanewdiagnosiswheretheclinicianisattemptingtoestimatedailydosageofinsulin.Forthisreason,insulinslidingscaleshouldbeusedsparinglyifatall,andglucosemonitoringshouldbedonenomorethanoncedailyinstablediabetics,morefrequently,albeittemporary,ifactivelyadjustingtheregimen.22Morethanoncedailybloodsugarsinstablediabeticpatientsshouldbediscouraged(Ibid). 18AMDAClinicalPracticeGuidelines:DiabetesManagementintheLong‐TermCareSetting2008.19AMDAClinicalPracticeGuideline:DiabetesManagementintheLong‐TermCareSetting2008.20ADAPositionPaperIndividualizedNutritionApproachesforOlderAdultsinHealthCareCommunities2010.21FoodandDiningClinicalStandardsresponse,3/23/11AmericanSocietyofConsultantPharmacists.22LeibleandWayne,TheRoleofthePhysician’sOrder,paperwrittenforCHII2010.

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Elderlynursinghomeresidentswithdiabetescanreceivearegulardietthatisconsistentintheamountandtimingofcarbohydrates,alongwithpropermedicationtocontrolbloodglucoselevels(Ibid).RelevantResearchTrendsThetraditionaltreatmentofdiabetesofa“noconcentratedsweets”andaliberaldiabeticdiethavenotbeenshowntoimproveglycemiccontrolinnursinghomeresidents.23Recentstudieshavefailedtoshowthattightglycemiccontrolpreventsheartattacksandstrokesindiabeticsandmayinfactworsenoutcome.24Tighterglycemiccontrolmaypreventlongtermcomplicationsofdiabetessuchasretinopathy,neuropathyandnephropathyinnewlydiagnoseddiabeticshowevertheseconditionstakeyearstodevelopandfew,ifany,olderadultswouldbenefitfromthisapproach.25Giventhelackofclearevidencetoguidetreatmentintheolderadultpopulation,AMDArecommendsindividualizingthetreatmentplanbasedonaresident’sunderlyingmedicalconditionandassociatedco‐morbiditiesandhasstatedatargethemoglobinAICbetween7and8isreasonable.26Littleevidencesupportstheuseofslidingscaleinsulinasitisreactiveinnatureandfailstomeetthephysiologicneedsoftheperson(Ibid).RecommendedCourseofPractice

• Diabeticdietsarenotshowntobeeffectiveinthelongtermcarepopulationofeldersforreducingbloodglucoselevelsandthereforeshouldonlybeusedwhenbenefittotheindividualresidenthasbeendocumented.


• Assesstheconditionoftheperson.Assessandprovidetheperson'spreferredcontextandenvironmentformeals,inotherwordstheperson'spreferences,patternsandroutinesforsocialization(i.e.eatingaloneorwithothers),physicalsupport(i.e.adaptedeatingutensils,assistancewithcartons/cuttingoradaptedw/cpositioning),timingofmeals(i.e.typicalcommunityoruniquemealtimes)andpersonalmeaning/valueofthediningexperience(i.e.foronewhodoesnoteatbreakfast,breakfastisnotimportant

23TariqSH,KarcicE,ThomasDR,etal.Theuseofno‐concentratedsweetsdietinthemanagementoftype2diabetesinnursinghomes.JAmDieteticAssoc2001;101(12):1463‐1466.24TariqSH,KarcicE,ThomasDR,etal.Theuseofno‐concentratedsweetsdietinthemanagementoftype2diabetesinnursinghomes.JAmDieteticAssoc2001;101(12):1463‐146625Effectsofintensiveglucoseloweringintype2diabetes.NEnglJMed2008;358(24):2545‐25526AMDAClinicalPracticeGuideline:DiabetesManagementintheLong‐TermCareSetting2008.

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butperhapsanearlylunchis).Includequalityoflifemarkerssuchassatisfactionwithfood,servicereceivedduringmeals,levelofcontrolandindependence.






• Althoughapersonmayhavenotbeabletomakedecisionsaboutcertainaspectsoftheirlife,thatdoesnotmeantheycannotmakechoicesindining.





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StandardofPracticeforIndividualizedLowSodiumDietBasisinCurrentThinkingandResearchAMDA:Suchdietaryrestrictionsmaybenefitsomeindividuals,butmorelenientbloodpressureandbloodsugargoalsinthefrailelderlymaybedesirablewhilealesspalatablerestricteddietmayleadtoweightlossanditsassociatedcomplications.27ADA:Therelationshipbetweencongestiveheartfailure,bloodpressure,andsodiumintakeintheelderlypopulationhasnotbeenwellstudied.TheAmericanHeartAssociationrecommendsthatolderadultsattempttocontrolbloodpressurethroughdietandlifestylechangesandrecommendsasodiumintakeof2to3g/dayforpatientswithcongestiveheartfailure.However,arandomizedtrialofadultsaged55to83yearsfoundthatanormal‐sodiumdietimprovedcongestiveheartfailureoutcomes.Aliberalapproachtosodiumindietsmaybeneededtomaintainadequatenutritionalstatus,especiallyinfrailolderadults.28CMS:Dietaryrestrictions,therapeutic(e.g.,lowfatorsodiumrestricted)diets,andmechanicallyaltereddietsmayhelpinselectsituations.Atothertimes,theymayimpairadequatenutritionandleadtofurtherdeclineinnutritionalstatus,especiallyinalreadyundernourishedorat‐riskindividuals.Whenaresidentisnoteatingwellorislosingweight,theinterdisciplinaryteammaytemporarilyabatedietaryrestrictionsandliberalizethediettoimprovetheresident’sfoodintaketotrytostabilizetheirweight.29RelevantResearchTrendsThetypicaltwogramsodiumdietthatisoftenrecommendedforindividualswithhypertension,hasbeenshowntoreducesystolicbloodpressures,onaverage,byonly5mmHg,anddiastolicbloodpressuresbyonly2.5mmHgmakingthisdiet’seffectonbloodpressuremodestatbestandhasnotactuallybeenshowntoimprovecardiovascularoutcomesinthenursinghomeresident30.Guidelinesforbloodpressuretargetsforolderadultsdifferfromthoseforyoungerpeople.Forolderadults,currentliteraturesupportsintervention,withmedicationand/ordiet,onlyfor

27AMDATheRoleoftheMedicalDirectorinPerson‐DirectedCareWhitePaper,Mar.2010,3.28ADALiberalizationoftheDietPrescriptionImprovesQualityofLifeforOlderAdultsinLTC2005.29CMSStateOperationsManualAppendixP,Tag325Nutrition30Dickinson,HO,Mason,JM,Nicolson,DJ,etal.Lifestyleinterventionstoreduceraisedbloodpressure:asystematicreviewofrandomizedcontrolledtrials.JHypertens2006;24:215.

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systolicbloodpressuresover160mmHgandtargetsasystolicbloodpressureoflessthan150mmHg.31Loweringsystolicbloodpressuresbelow120to130mmHganddiastolicpressuresbelow65mmHgmayincreasemortalityintheelderly.32Limitingsaltintakeinindividualswithcongestiveheartfailureisfelttobeofbenefitbylimitingfluidretention,buttheclinicalexperienceoftwomedicaldirectorsofnumerousnursinghomesshowsthatthisisnecessaryinonlyaminorityofnursinghomepatients,usuallythosewhoaresaltsensitiveandoftenhaveadvanceddisease.33Olderpeoplehavethesametastepreferencesastheyhavehadalloftheirlife,andthuslowsodium,lowfatmealsarenotalwaysasappetizingasthenormalversionofafoodwithnaturallyhighfatandsodiumcontent.34RecommendedCourseofPractice

• LowsodiumdietsarenotshowntobeeffectiveinthelongtermcarepopulationofeldersforreducingbloodpressureorexacerbationsofCHFandthereforeshouldonlybeusedwhenbenefittotheindividualresidenthasbeendocumented.





• Supportself‐directionandindividualizetheplanofcare.

31Beckett,NS,Peters,R,Fletcher,AE,etal.Treatmentofhypertensioninpatients80yearsofageorolder.NEnglJMed2008;358:1887.32OatesDJ,BerlowitzDR,GlickmanME,SillimanRA,BorzeckiAM.Bloodpressureandsurvivalintheoldestold.JAmGeriatrSoc2007;55(3):383‐8.33LeibleandWayne,TheRoleofthePhysicianOrder,paperwrittenforCHII2010.34Calverley,D.“TheFoodFighters.”NursingStandard,Vol.22,2007,20‐21.

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• Ensurethatthephysicianandconsultantpharmacistareawareofresidentfoodanddiningpreferencessothatmedicationissuescanbeaddressedandcoordinatedi.e.medicationtimingandimpactonappetite.







19

StandardofPracticeforIndividualizedCardiacDietBasisinCurrentThinkingandResearchAMDA:RoutinedietaryrestrictionsareusuallyunnecessaryandcanbecounterproductiveintheLTCsetting.Specialdietsfordiabetes,hypertensionandheartfailure,andhypercholesterolemiahavenotbeenshowntoimprovecontroloraffectsymptoms.Whenapatientisatriskorhasunintendedweightloss,thepresenceofoneofdiagnosesaloneisinsufficientjustificationforcontinuingdietaryrestrictions.Thereasonsforanydietaryrestrictionsthatareorderedshouldbeclearlystatedinthepatient’srecord.35ADA:TheDietaryApproachestoStopHypertension(DASH)eatingpatternisknowntoreducebloodpressureandmayalsoreduceratesofheartfailure.TheDASHdietislowinsodiumandsaturatedfatbutalsohighincalcium,magnesium,andpotassium.Thenutritioncareplanforolderadultswithcardiacdiseaseshouldfocusonmaintainingbloodpressureandbloodlipidlevelswhilepreservingeatingpleasureandqualityoflife.UsingmenusthatworktowardtheobjectivesoftheDietaryGuidelinesforAmericansand/ortheDASHdietcanhelpachievethosegoals.36CMS:Dietaryrestrictions,therapeutic(e.g.,lowfatorsodiumrestricted)diets,andmechanicallyaltereddietsmayhelpinselectsituations.Atothertimes,theymayimpairadequatenutritionandleadtofurtherdeclineinnutritionalstatus,especiallyinalreadyundernourishedorat‐riskindividuals.Whenaresidentisnoteatingwellorislosingweight,theinterdisciplinaryteammaytemporarilyabatedietaryrestrictionsandliberalizethediettoimprovetheresident’sfoodintaketotrytostabilizetheirweight.37RelevantResearchTrendsTheeffectsofthetraditionallowcholesterolandlowfatdietstypicallyusedtotreatelevatedcholesterolvarygreatlyand,atmost,willdecreaselipidsbyonly10‐15%.Ifaggressivelipidreductionisappropriateforthenursinghomeresidentitcanbemoreeffectivelyachievedthroughtheuseofmedicationthatprovidesaveragereductionsofbetween30and40%whilestillallowingtheindividualtoenjoypersonalfoodchoices.38,39

35AMDAClinicalPracticeGuidelineforAlterationinNutritionalStatus,2010,20.36ADAPositionPaperIndividualizedNutritionApproachesforOlderAdultsinHealthCareCommun.2010.37CMSStateOperationsManualAppendixP,Tag325Nutrition38Randomisedtrialofcholesterolloweringin4444patientswithcoronaryheartdisease:theScandinavianSimvastatinSurvivalStudy(4S),TheLancet.1994;344(8934):1383.39LaRosaJC,GrundySM,WatersDD,ShearC,BarterP,FruchartJC,GottoAM,GretenH,KasteleinJJ,ShepherdJ,WengerNK,TreatingtoNewTargets(TNT)Investigators.Intensivelipidloweringwithatorvastatininpatientswithstablecoronarydisease.NEnglJMed.2005;352(14):1425.

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• Lowsaturatedfat(lowcholesterol)dietshaveonlyamodesteffectonreducingbloodcholesterolinthelongtermcareelderpopulationandthereforeshouldonlybeusedwhenbenefithasbeendocumented.













21

StandardofPracticeforIndividualizedAlteredConsistencyDiet

Analteredconsistencydietisusuallyprescribedduetoswallowingdifficulties,ordysphagia,whichisnotadiagnosisbutratherasymptomcommonlyassociatedwithconditionssuchasstroke,dementiaorParkinson’sdisease.BasisinCurrentThinkingandResearchAMDA:Swallowingabnormalitiesarecommonbutdonotnecessarilyrequiremodifieddietandfluidtextures,especiallyiftheserestrictionsadverselyaffectfoodandfluidintake.40Providefoodsofaconsistencyandtexturethatallowcomfortablechewingandswallowing.Aresidentwhohasdifficultyswallowingmayrejectpureedorartificiallythickenedfoodsbutmayeatfoodsthatarenaturallyofapureedconsistency,suchas….mashedpotatoes,…puddings,…andyogurt,finelychoppedfoodsmayretaintheirflavorandbeequallywellhandled(Ibid).

ADA:Theregistereddietitianshouldcollaboratewiththespeech‐languagepathologistandotherhealthcareprofessionals[suchastheoccupationaltherapist]toensurethatolderadultswithdysphagiareceiveappropriateandindividualizedmodifiedtexturediets.Olderadultsconsumingmodifiedtexturedietsreportanincreasedneedforassistancewitheating,dissatisfactionwithfoods,anddecreasedenjoymentofeating,resultinginreducedfoodintakeandweightloss.41CMS:Indecidingwhetherandhowtointerveneforchewingandswallowingabnormalities,itisessentialtotakeaholisticapproachandlookbeyondthesymptomstotheunderlyingcauses.Excessivemodificationoffoodandfluidconsistencymayunnecessarilydecreasequalityoflifeandimpairnutritionalstatusbyaffectingappetiteandreducingintake.Manyfactorsinfluencewhetheraswallowingabnormalityeventuallyresultsinclinicallysignificantcomplicationssuchasaspirationpneumonia.Identificationofaswallowingabnormalityalonedoesnotnecessarilywarrantdietaryrestrictionsorfoodtexturemodifications.Nointerventionsconsistentlypreventaspirationandnotestsconsistentlypredictwhowilldevelopaspirationpneumonia.42

40AMDAClinicalPracticeGuidelineforAlterationinNutritionalStatus2010,20.41ADAUnintendedWeightLossGuideline2009.42CMSStateOperationsManualAppendixPP,483.25TagF325Nutrition.

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RelevantResearchTrendsDiseasestateswhichaffectmusclestrengthandcoordinationaltertheabilityforonetosuccessfullycompleteaswallowand/orprotecttheairwayresultingin:1)choking,wherefoodpartiallyorfullyobstructsaresident’sairway;or2)aspirationorinhalationoffood/liquids,oralsecretionsorgastricsecretionsintotheairwayandlungswhichmayresultinpneumoniaorpneumonitis.43Inaddition,problemswithswallowingefficiency(weakness/fatigue/limitedendurance)mayleadtoresidueintheoraltract,incompleteswallowingandreducedintake.44,45Theanticipatedoutcomeofsolidfoodsgroundorpureedandliquidsthickenedtonectarorhoneythicknessisimprovementinoralintakeandareducedriskofchokingand/oraspiration.However,dataontheireffectivenessisinconsistent;notallresidentswithdysphagiaaspirateorchokeandnotallaspirationresultsinpneumonia.46,47,48Whileamodifiedbariumswallowmayshowthatthickenedliquidsreducetheriskofaspirationacutely,thereislittletonolongtermevidencethatthisinterventionpreventsaspirationpneumonia49,50,51.Thereisevidencethatimprovedoralcarecanreducetheriskofdevelopingaspirationpneumoniaintheelderly.52,53Inaddition,oralcarecanimpactclinicalissuessuchasdehydration.Forexample,residentswithswallowingproblemsmaybeabletohavewater

43MarikPE.AspirationPneumonitisandAspirationPneumonia.NEngJMed2001;344;9:665‐671.44Kays,S.&Robbins,J.2009.Theapplicationoftongueendurancemeasurestofunctionaldining.PerspectivesonSwallowingandSwallowingDisorders(Dysphagia),18,61‐67.45Kays,S.A.,Hind,J.A.,Gangnon,R.E.,&Robbins,J.2010.Effectsofdiningontongueenduranceandswallowing‐relatedoutcomes.JournalofSpeech,Language,andHearingResearch,53,898‐907.46LogemanJA,GenslerG,Robbins,etal.Design,Procedures,Findings,andIssuesfromtheLargestNIHFundedDysphagiaClinicalTrialentitledRandomizedStudyofTwoInterventionsforLiquidAspiration;ShortandLong‐termEffects.(Protocol201)PresentedatASHAAnnualConference,November16‐18,2006.Availableathttp://www.dysphagassist.com/major_randomized_studies.AccessedDec20,2009.47RobbinsJ,etal.Comparisonof2InterventionsforLiquidAspirationonPneumoniaIncidence.AnnIntMed2008;148:509‐518.48Messinger‐RapportB,etal.ClinicalUpdateonNursingHomeMedicine:2009.JAmerMedDirAssoc2009;10:530‐553.49LogemanJA,GenslerG,Robbins,etal.Design,Procedures,Findings,andIssuesfromtheLargestNIHFundedDysphagiaClinicalTrialentitledRandomizedStudyofTwoInterventionsforLiquidAspiration;ShortandLong‐termEffects.(Protocol201)PresentedatASHAAnnualConference,Nov.16‐18,2006.Availableathttp://www.dysphagassist.com/major_randomized_studies.AccessedDec20,2009.50RobbinsJ,etal.Comparisonof2InterventionsforLiquidAspirationonPneumoniaIncidence.AnnIntMed2008;148:509‐518.51Messinger‐RapportB,etal.ClinicalUpdateonNursingHomeMedicine.JAmerMedDirAssoc2009;10:530‐553.52SarinJ,BalasubramaniamR,CorcoranAM,etal.Reducingtheriskofaspirationpneumoniaamongelderlypatientsinlong‐termcarefacilitiesthroughoralhealthinterventions.JAmMedDirAssoc.2008;9:128–13553Yoon,M.N.&Steele,C.M.(2007).Theoralcareimperative:Thelinkbetweenoralhygieneandaspirationpneumonia.TopicsinGeriatricRehabilitation,23,280‐288.

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throughouttheday(i.e.theFrazierfreewaterprotocol),aslongasgoodoralcareisprovided.54

Recentinformationalsoraisestheconcernthattheseatriskresidentsbecomemoreatriskfordehydrationandmalnutritioncausedbytheunpalatableandvisuallyunappealingmodifieddysphagiadiets.55Managementofallgeriatricconditionsinvolvessomerisks.Noknownevaluationsorinterventionscanguaranteethatsomeonewillnotaspirate.Itisimportanttonotethatmanyelderlyindividualswithswallowingabnormalitiesandaspirationriskdonotgetaspirationpneumonia.Infact,thereisevidencethatalteredconsistencydietsmayincreasetheriskofnutritionandhydrationdeficits.Thickenedliquidsandpureedfoodsareoftenpoorlytolerated.56

Whiletherearecurrentlynopublishedstudiesthatshowthattubefeedingpreventsaspiration,onestudyfoundthatorallyfedpatientswithdysphagicdisordershadsignificantlylessaspirationthantube‐fedpatients.57

CurrentThinkingGiventhecomplexityoftheswallowmechanismandthemultitudeofproblemsthatcanarise,itisessentialthatthephysicianisinvolvedintheevaluationofswallowingdisorders.Athoroughhistoryandphysicalexaminationisrequiredtodeterminepotentialcausesoftheswallowingdysfunction.Whilethemostcommonprocessescausingdysphagiainlongtermcarearerelatedtoidentified,co‐morbidconditions,itisimportanttoconsiderotherdiseasestatesorpathologysuchaspreviouslyundiagnosedmasslesions,gastroesophagealreflux,orcancer.58

...theinterdisciplinaryteamshouldassessdysphagiainthecontextofthewholeindividual.Itisessentialtounderstandwhotheresidentis,andhowhe/sheisdoingmedically,functionallyandpsychosocially.59

Ifamedicalevaluationidentifiesoral‐pharyngealdysphagiaasaconcern,abedsideswallowevaluationshouldbeperformed.Thisevaluationmayprovidevaluableinformationregarding 54Panther,K.2005.TheFrazierfreewaterprotocol.PerspectivesonSwallowingandSwallowingDisorders(Dysphagia),14,4‐9.55SteeleC.FoodforThought:PrimumNonNocere:ThePotentialforHarminDysphagiaIntervention.PerspectivesonSwallowingandSwallowingDisorders(Dysphagia).2006:15:19‐23.56Levenson,Steven.“ChangingPerspectivesonLTCNutrition&Hydration.”CaringfortheAges.September2002,Vol.3,No.9,pp.10‐14.http://www.amda.com/publications/caring/september2002/nutrition.cfm57FeinbertMJ,KneblJ,TullyJ.Prandialaspirationandpneumoniainanelderlypopulationfollowedoverthreeyears.Dysphagia1996;11;104‐109.58LeibleandWayne,TheRoleofthePhysicianOrder,paperwrittenforCHII2010.59Levenson,S.TheBasisforImprovingandReformingLong‐TermCare,Part3:EssentialElementsforQualityCare,JAmerMedDirAssoc,2009:10:597‐606.

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theresident’sswallowingfunctionandefficiency.Resultsofthisevaluationshouldbeconsideredbytheinterdisciplinaryteamandrecommendationsregardingswallowingmanagement,includingdietmodifications,shouldbemadebaseduponconcernsthathavebeenraisedanddiscussionwiththeresidentand/ortheirfamily/POAregardingrisksandbenefits.60Theuseofvideofluoroscopyorotherinstrumentalswallowingassessmentsinlongtermcareshouldbeusedonlywhenclinicallyindicated.Whenusedappropriately,theseassessmentscanprovideusefulinformationaboutwhereproblemsarearisingandpotentialmodificationsthatmaybeofassistancetotheresident.Theresultsofthesetestsshouldbeusedinassistingtheinterdisciplinaryteamindiscussingfurtheroptionswiththeresidentandortheirfamily/PowerofAttorney(POA).Ifthetestingwillnotaddnewinformationoraidinadjustingtheresident’splanofcarethenthevalueoftheadditionaltestneedstobereconsidered(Ibid).Interdisciplinaryteammembers,includinghealthcarepractitioners,shouldbeinvolvedinbalancingtherisksofaspirationagainstthepotentialbenefitsofmoreliberaldietsandfoodconsistency,anddecidingwhetherthereareviablealternatives.Thereshouldbeadiscussionofthepatient’sprogress,goalsandobjectives.Often,aspirationrisksmustbetoleratedbecauseofother,moreimmediateorprobableriskssuchasnutritionorhydrationdeficits.61(Forthispurposeofthisdocument,healthcarepractitionersreferstoadvancedpracticenurses,physicianassistantsandphysicians.)Somephysiciansarewritingordersformodifiedconsistenciesinrangesthataccommodateeachresident’sdifferingacceptance/toleranceatdifferenttimesofday,todifferentfoodgroupssuchas"pureetomechanicalsoft"or"mechanicalsofttosoft."62Acomprehensiveandthoroughassessmentoftheresidentincludeseverythingfrommedicationsideeffectsthatreduceappetitetodepressionandbeyondtoensurethatthestandardofcarerelatedtonutritionisprovided.Whenallisruledoutanddocumentedandtheresidentorfamilypersistsinrefusal‐‐‐thisbecomesthestandardofcareforthatperson.Ensuringthoroughongoingreassessmentisofutmostimportanceinordertocontinuallychallengethehighestpracticableleveloffunctioningrepeatedlyovertime,especiallyinthemonthsfollowingtheoriginaldiagnosisaswellascapturingthatwhatapersonwantscananddoeschangeovertime(Ibid).

Theriskofchokingneedstobecomparedandweighedtotheslowprocessofwastingaway.Weneedtostoplettingtherisk‐benefitsdefaulttothespecialdiet.We’reweightedonthatsideandnotlookingatthatthepersonmightwasteaway(CHIIRecommendation).

RecommendedCourseofPractice 60LeibleandWayne,TheRoleofthePhysicianOrder,paperwrittenforCHII2010.61Levenson,Steven.“ChangingPerspectivesinLTCNutritionandHydration.”CaringfortheAges.9.3200210‐14.62Bump,Linda.ClinicalStandardsTaskForcecommunication,2011.

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StandardofPracticeforIndividualizedTubeFeeding

BasisinCurrentThinkingandResearchAMDA:Tubefeedingmaybeclinicallyappropriateincertaincircumstances,butitshouldnotbeanautomaticnextstepwhenotherfeedingstrategieshavefailed.Beforedecidingtoinitiatetubefeeding,theinterdisciplinarycareteamshouldmeetwiththepatientandfamilytocarefullyconsidertherisksandbenefitsoftubefeedingandthepatient’spreferences.Contrarytowhatmanypeoplethink,tubefeedingdoesnotensurethepatient’scomfortorreducesuffering;itmaycausediarrhea,abdominalpain,andlocalcomplicationsandmayincreasetheriskofaspiration.63ADA:Enteralnutritionmaynotbeappropriateforterminallyillolderadultswithadvanceddiseasestates,suchasterminaldementia,andshouldbeinaccordancewithadvanceddirectives.Thedevelopmentofclinicalandethicalcriteriaforthenutritionandhydrationofpersonsthroughoutthelifespanshouldbeestablishedbymembersofthehealthcareteam,includingtheregistereddietitian.64CMS:Indecidingwhetherandhowtointerveneforchewingandswallowingabnormalities,itisessentialtotakeaholisticapproachandlookbeyondthesymptomstotheunderlyingcauses.Excessivemodificationoffoodandfluidconsistencymayunnecessarilydecreasequalityoflifeandimpairnutritionalstatusbyaffectingappetiteandreducingintake.Manyfactorsinfluencewhetheraswallowingabnormalityeventuallyresultsinclinicallysignificantcomplicationssuchasaspirationpneumonia.Identificationofaswallowingabnormalityalonedoesnotnecessarilywarrantdietaryrestrictionsorfoodtexturemodifications.Nointerventionsconsistentlypreventaspirationandnotestsconsistentlypredictwhowilldevelopaspirationpneumonia.Forexample,tubefeedingmaybeassociatedwithaspiration,andisnotnecessarilyadesirablealternativetoallowingoralintake,evenifsomeswallowingabnormalitiesarepresent.65RelevantResearchTrendsFeedingtubeshavenotbeenshowntoreducetheriskofaspirationorprolongsurvivalinresidentswithendstagedementia.66

63AMDAClinicalPracticeGuidelineforAlterationinNutritionalStatus,2010,22.64ADAUnintendedWeightLossGuideline,2009.65CMSStateOperationsManualAppendixPP,483.25TagF325Nutrition66CasarettD,KapoJ,KaplanA.AppropriateUseofArtificialNutritionandHydration‐FundamentalPrinciplesandRecommendations.NEngJMed2005;353;24:2607‐2612.

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Oralsecretionsand/orgastriccontentareoftenthesourceofaspirationpneumoniaorpneumonitisandthuswillnotberesolvedwiththeplacementofatube.67Argumentsforplacingatubeforfeedingincludeimprovingnutritionalstatus.Studiesintheelderlywithdementiahaveshownlittletonoimprovementinweight.Insituationswhentherewasimprovementinweight,therewasnoimprovementinclinicaloutcomefortheresidents.Enteralfeedingisalsoconsideredforwoundcareasameanstoimprovewoundhealing.Dataovera6monthfollowuphasshownnoimpactonpressureulcersoroninfectionssuchascellulitisassociatedwithwounds68,69.Percutaneousendoscopicgastrostomy(PEG)andPercutaneousEndoscopicJejunostomy(PEJ)tubesdonotimprovearesident’squalityoflife.Thereareassociatedphysicalandpsychosocialdiscomfortsrelatedtothefeedingsthemselvessuchasabdominaldistension,diarrhea,andrestrictionoffreemovementifattachedtoaninfusiondevice.Additionally,theresidentisdeprivedofthesocialexperienceofmealtimethatisvaluedbymany.PlacingaPEGtubeinresidentswithadvanceddementiashouldbestronglydiscouraged,andplacementinotherindividualsshouldtakegoalsofcareintoaccount.70

Asystematicliteraturesearchof13controlledtrialsontheuseofsupplementswithpeoplewithdementiaand12controlledtrialstestingassistedfeedingshowedhighcaloriesupplementsandotheroralfeedingoptionscanhelppeoplewithdementiatogainweightasanalternativetotubefeeding.71Duetoafocusonfoodandtheiraromas“halfadozenresidentshavetradedintheirg‐tubesforaplaceatthetable”atIdylwoodCareCenterinSunnyvale,California.72Methicillin‐resistantStaphylococcusaureus(MRSA)colonizationismorelikelytobeidentifiedinresidentswithpressureulcersorfecalincontinenceorwhoarebedboundorrequirefeedingtubesorurinarycatheters.73Issuesrelatedtotubefeedingarecapturedinthisstoryfromafamilymember:Rosehadastrokewhenshewas82leavingherimmobile,unabletospeakclearlyorfeedherself.Itwasfoundthatshewasaspiratinguponswallowingandofcourseherphysicianstrongly

67LeibleandWayne,TheRoleofthePhysicianOrder,paperwrittenforCHII2010.68SampsonEL,CandyB,JonesL.Enteraltubefeedingforolderpeoplewithdementia.CochraneDatabase2009April15;(2):CD007209.69FinucaneT,ChristmasC,TravisK.TubeFeedingsinPatientswithAdvancedDementia:AReviewoftheEvidence.JAMA,Oct1999;1365‐1370.70LeibleandWayne,TheRoleofthePhysicianOrder,paperwrittenforCHII2010.71Hanson,L.C.,Ersek,M.,Gilliam,R.,andCarey,T.S.OralFeedingOptionsforPeoplewithDementia:ASystematicReview,JAGS59:463‐472,2011.72Schaeffer,Keith.NourishtheBodyandSoul,ActionPactPublishing,2008.73BradleyS.Issuesinthemanagementofresistantbacteriainlong‐termcarefacilities.InfectControlHospEpidemiol1999;20:362‐6.

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recommendedapermanentfeedingtube.Despiteherlosses,Rosewasverymentallyclearandstronglyindicatedshewantednotubes!Hersister/powerofattorneydefendedherchoicesandthephysicianreluctantlydischargedhertoskilledcarewithnotubes.Rosewashandfedpureedfoodandshediddieofaspiration…7yearslater.74RecommendedCourseofPractice

• Whenthereisweightlossandfunctionaldeclineinanelderwithmultiplecomorbiditiesorwithendstagediseasethedefaultshouldnotbetoplaceag‐tubefornutritionandhydration.Theinterdisciplinaryteamincludingtheelder’sprimarycarephysicianshouldmeettoaddresstheelder’sandorPOAgoalsforcareanddevelopacareplanthatmeetsthechangingneedsoftheelder.Thismayincludeadiscussionregardingpalliativecareorhospicewiththeelderandthefamily.











• Whencaringforfraileldersthereisoftennoclearrightanswer.Possibleinterventionsoftenhavethepotentialtobothhelpandharmtheelder.Thisiswhythephysician

74AnnaOrtigara,anecdotalfamilystory,4‐2011.

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mustexplaintherisksandbenefitstoboththeresidentandinterdisciplinaryteam.Theinformationshouldbediscussedamongsttheteamandresident/family.Theresidentthenhastherighttomakehis/herinformedchoiceevenifitisnottofollowrecommendedmedicaladviceandtheteamsupportsthepersonandhis/herdecision,mitigatingrisksbyofferingsupport,i.e.offeringfoodsofnaturalpureedconsistencywhenonerefusesrecommendedtubefeeding.Itiswhentheteammakesdecisionsforthepersonwithoutacknowledgementbyallthatproblemsarise.Theagreeduponplanofcareshouldthenbemonitoredtomakesurethecommunityisbestmeetingtheresident'sneeds.


Pleaseseetheappendixasitincludesanethicalcasestudyinvolvingtubefeedinganda

superbdocumentregardinginformedchoiceandwhoultimatelydecides.

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StandardofPracticeforIndividualizedRealFoodFirstBasisinCurrentThinkingandResearchAMDA:Providefoodsofaconsistencyandtexturethatallowcomfortablechewingandswallowing.Aresidentwhohasdifficultyswallowingmayrejectpureedorartificiallythickenedfoodsbutmayeatfoodsthatarenaturallyofapureedconsistency,suchas…mashedpotatoes,...puddings,…andyogurt,finelychoppedfoodsmayretaintheirflavorandbeequallywellhandled.75

ADA:Researchsuggeststhatthegoaloffoodserviceshouldbetocreateamealsituationasnaturalandindependentaspossible,comparablewitheatingathome;makingchoicesfromawiderangeofmenuitemstailoredtotheresident’swants;andseekinginputfromresidents,familyandstaff.Stringentdietrestrictionslimitingfamiliarfoodsandeliminatingormodifyingseasoningsmaycontributetopoorappetite;decreasedfoodintake;andincreasedriskofillness,infectionandweightloss.76

CMS:Withanynutritionprogram,improvingintakeviawholesomefoodsisgenerallypreferabletoaddingnutritionalsupplements.77CMSanswersregardingchoicetoeatfoodoutofagardenintheSurveyandCertificationmemoS&C‐07‐07December21,2006:

Question2:(370)ApprovedFoodSources:YouaskiftheregulatorylanguageatthisTagthatthefacilitymustprocurefoodfromapprovedfoodsourcesprohibitsresidentsfromanyofthefollowing:1)growingtheirowngardenproduceandeatingit;2)eatingfishtheyhavecaughtoafishingtrip;or3)eatingfoodbroughttothembytheirownfamilyorfriends.Response2:TheregulatorylanguageatthisTagisinplacetoprohibitafacilityfromprocuringtheirfoodsupplyfromquestionablefoodsources,inordertokeepresidentssafe.Itwouldbeproblematicifthefacilityisservingfoodtoallresidentsfromthesourcesyoulist,sincethefacilitywouldnotbeabletoverifythatthefoodtheyareprovidingissafe.Theregulationisnotintendedtodiminishtherightsofspecificresidentstoeatfoodinanyofthecircumstancesyoumention.Inthosecases,thefacilityisnotprocuringfood.Theresidentsaremakingtheirownchoicestoeatwhattheydesiretoeat.Thiswouldalsobethecaseifaresidentorderedapizza,attendedaballgameandboughtahotdog,oranysimilarcircumstance.TherighttomakethesechoicesisalsopartoftheregulatorylanguageatF242,thattheresidenthastheright

75AMDAClinicalPracticeGuidelineforAlterationinNutrition,2010.76ADALiberalizationoftheDietPrescriptionImprovesQualityofLifeforOlderAdultsinLTC,2005.77CMSStateOperationsManualAppendixPP483.25(i)TagF325Nutrition2008RevisedGuidance.

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to,“makechoicesaboutaspectsofhisorherlifethatareimportanttotheresident.”Thisisakeyrightthatwebelieveisalsoanimportantcontributingfactortoaresident’squalityoflife.

RelevantResearchTrendsAnexpectationofOBRAsince1987,choosingfoodbeforesupplements,andfoodbeforemedicationisanaturaldecisioninculturechange.Withchoice,accessibilityandindividualization,ourresidentseatfoodsofchoicethroughouttheday,andevenduringthenightifneedbe,eliminatingtheneedforcostly,andoftenrefused,commercialsupplements.Similarly,theneedforlaxativesisreducedandofteneliminatedwithincreasedfluidintakeandincreasedopportunitiesforfiberrich,bowelstimulatingfoodsofchoice.Eventheneedformedicationforbehavioralmanagementcanbereducedwhenfoodsofchoiceareavailableattimesofchoiceandplacesofchoice.78Homeseliminatingcommercialsupplementshavefoundasignificantincreaseinfoodconsumptionandreducedincidenceofweightloss(Ibid).

Oralsupplements……oftengowastedorconflictwithmedications.Improvingtasteisoneofthebestandsimplestwaysofimprovingnutrition.79

An11weekrandomizedcontrolledinterventionstudywith121peoplelivinginnursinghomesfoundimprovednutritionandfunctionwithamultifacetedinterventionofchocolate,homemadesupplements,groupexerciseandoralcare.80Oralliquidnutritionsupplementshavebeenshowntobeonlymoderatelysuccessfulinincreasingenergyintake,whichhasalsobeenshowntoberelatedtothelimitedtimestaffcandevotetogettingthesupplementsdeliveredandgivingverbalencouragementtoconsumethem.81Arandomized,controlledtrialinthreenursinghomeswithsixtythreeresidentsfoundofferingresidentsachoiceamongavarietyoffoodsandfluidstwiceperdaymaybeamoreeffectivenutritioninterventionthanoralliquidnutritionsupplementation.Alsofoundwasthatsnackoptionsareamorecost‐effectivenutritioninterventionrelativetosupplementsbasedonstafftime,residentrefusalrates,caloricintakeandwaste.82 78Bump,Linda.FoodforThought.ActionPactPublishing.2004‐2005.79Webster,Clint.PreventingMalnutritionintheElderly.FinalResearchPapers,Winter2008,March4,2008.80Beck,A.M.,Damkajaer,K.andBeyer,N.Multifacetednutritionalinterventionamongnursinghomeresidentshasapositiveinfluenceonnutritionandfunction.Nutrition,24,2008,1073‐1080.81Schlettwein‐Gsell,D.“Nutritionandthequalityoflife:Ameasurefortheoutcomeofnutritionalintervention?”AmericanJournalofClinicalNutrition,Vol.556,1992,pp.12635‐12665.82Simmons,SandraF.,Zhuo,X.,Keeler,E.Cost‐effectivenessofNutritionInterventionsinNursingHomeResidents:apilotintervention.TheJourofNut,HealthandAgingVol.14No.52010367‐372.

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Historically,ithasbeenshownthatgivingpeoplefoodstheyliketoeatminimizestheuseofsupplementsandcanreducecosts.Forexample,EricandMargieHaider,administratoranddirectorofnursingatCrestviewNursingHomeinMissouriin2001,espousedthatbygivingpeoplefoodstheyliketoeat,youcanminimizetheuseofsupplementsandcalculatedasavingsof$1,164.00permonthbyservingrealfoodsresidentswantedtoeat.83SupplementsatCrestviewwentfrom72in1998toonly14byJuly2000.84

Onestudyrevealedthatamong100frailnursinghomeresidents,oralproteinsupplementsdidnotproduceimprovementinmeasuresofstrengthorfunctionunlessitwascombinedwithresistancestrengthtraining.85Reducingthenumberofmedicationsthataresidenttakescanalsoimpactappetite.Residentsthatmusttakenumerouspillsorlargevolumesofliquidateachmed‐pass,withbulklaxatives,forexample,canhavereducedappetiteatmealtime.86Elderlypeoplewhohaveoneormoremedicalconditionsandaretakinganaverageofthreemedicationsshowgreaterlossesoftastesensitivitythanhealthy,olderadults.87Flavorenhancementofnutrientdensefoodmaycompensatefortastelossesandimprovefoodintake.Flavorenhancersaremixturesofodorousmoleculesthatareextractedfromnaturalproductsorsynthesized,suchasmonosodiumglutamate.Flavorenhancementdiffersfromaddingspices,herbs,andsaltbecauseflavorenhancementintensifiestheflavoroffoodwhilespicesandherbsincreaseodorandtastesensation.Studiesinvolvingfrailelderlyhaveshownthataddingflavorenhancerstofoodimprovedintakeandimmunefunctionbyincreasingthetotalnumberoflymphocytes,resultinginimprovedfunctionalstatus.88CurrentThinking

Beforeanynutritionalsupplementisofferedletalone“ordered,”providersandsurveyorsensurethatrealfoodswereofferedfirst(CHIIRecommendation).

Somehomesarefindingalternativestodietarysupplementationbyengagingtheeldersingrowingtheirowngarden.Theelderschoosewhatwillbegrown,helpwiththeplanting, 83Bowman,CarmenS.TheEnvironmentalSideoftheCultureChangeMovement:IdentifyingBarriersandPotentialSolutionstofurtheringInnovationinNursingHomes.BackgroundPapertotheApril3rd,2008CreatingHomeintheNursingHome:ANationalSymposiumonCultureChangeandtheEnvironmentRequirements.ReportofCMSContractHHSM‐500‐2005‐00076P.84Rantz,MarilynJ.,andMarciaK.Flesner.PersonCenteredCare:AModelforNursingHomes.AmericanNursesAssociation:WashingtonD.C.,2004,pp.23,25.85FiataroneMA,O’NeillMF,RyanND,etal.Exercisetrainingandnutritionalsupplementationforphysicalfrailtyinveryelderlypeople.NEnglJMed,1994;330;1769‐1775.86Martin,McHenryCaren.TheConsultantPharmacist’sExpandedRoleinNutritionManagement.TheConsultantPharmacist.June2009.Vol.24.No.6.87ShiffmanSS,GrahamBG,Tasteandsmellperceptionaffectappetiteandimmunityintheelderly.EuroClinNutr2000;54,3:54‐63.88ShiffmannSS,Intensificationofsensorypropertiesoffoodsfortheelderly.JNutr2000;130Suppl4;927‐930.

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tendingandharvesting.Thentheyhelpprepareandeattheharvest.Besidesthenutritionalbenefit,theeldersalsohavethebenefitofaccomplishmentandcontributionwhichaffectstheirmoodandself‐esteem.89


• Advocatetheuseofrealfoodbeforetheadditionofdietarysupplements.• Recommendusingrealfoodbeforeanymodifiedfoodsincludinglaxativemixturesor

singlesourcenutrientpowders/liquids.• Insteadofartificialsupplements,extraprotein,vitaminandfiberpowderscanbeadded

tosmoothies,shakes,maltsandotherrealfoodspeopleliketoeat.• Useoffreshproduceisencouraged,anexamplewouldbeproducefromresident

gardens.• Thediningexperienceshouldbeasnaturalaspossiblecomparabletoeatingathome.• Residentsatisfactionwiththequalityofthefoodandthediningexperienceshouldbea

home’spriority.

89Hyde,Denise.TheRoleofthePharmacist.PaperforCHII.

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StandardofPracticeforIndividualizedHonoringChoicesManyhomesareofferingthepeoplewholivetheremorediningchoicesbasedontheindividual’slifepatterns,historyandcurrentpreferences.Includingbutnotlimitedtoopendiningtimes,choicefrommenus,buffets,familydiningstylewithfoodatthetableandsnackbars/accessiblepantries.Honoringchoiceisacomplexissueincludingvariablessuchasbalancingriskwithbenefit,individualdecisionmakingcapacity,andinclusionofresidentadvocates.Honoringchoiceisbornoutofrelationship,consistentresidentstaffrelationshipsareessentialtoidentifyingandhonoringindividualchoice.

BasisinCurrentThinkingandResearchAMDA:Mostresidentswillappreciatehavingthesechoicesandtheteamcanweighthebenefitsagainsttherisksandworkwiththeresidentand/orfamily/POAtoestablishaneffectiveindividualizedplanofcare.90Identifyingtheproperbalancebetweenmedicalcomplexity,whichmayrequiremedications,modificationsandrestrictions,andallowingforpersonalchoice,istheessenceofgoodmedicine.However,ablanketorroteapproachtotheseissues(forexample,easingrestrictionsoneveryonewithoutregardtoimpact)isinconsistentwithsoundapproaches.Individualizedcareshouldseektounderstandtheentireperson,tofocusattentiononthemedical,functionalandpsychosocialaspectsoftheresident.Theinterdisciplinaryteamshouldconsiderthepotentialeffectsofproposedinterventionsontheresident,ratherthansimplythetreatmentorprotocol’seffectonadisease.Forexample,someresidentswhoremaininbeduntiltheyawakeontheirownmaydeveloppressureulcersorloseweight,althoughmostwillnot.Mostresidentswillappreciatehavingthesechoicesandtheteamcanweighthebenefitsagainsttherisksandworkwiththeresidentand/orfamily/POAtoestablishaneffectiveindividualizedplanofcare.Thisapproachisespeciallyhelpfulinsituationswherethebenefitsoftheinterventionaremodestandtheriskssignificant.91ADA:Involvingindividualsinchoicesaboutfoodanddiningsuchasfoodselections,dininglocations,andmealtimescanhelpthemmaintainasenseofdignity,control,andautonomy.92

Includingolderindividualsindecisionsaboutfoodcanincreasethedesiretoeatandimprovequalityoflife(Ibid). 90AMDATheRoleoftheMedicalDirectorinPerson‐DirectedCareWhitePaper,Mar.2010,3.91AMDATheRoleoftheMedicalDirectorinPerson‐DirectedCareWhitePaper,Mar.2010,3.92ADAPositionPaperIndividualizedNutritionApproachesforOlderAdultsinHealthCareCommunities,2010.

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CMS:TagF242Self‐Determinationandparticipation‐Theresidenthastherightto:1)Chooseactivities,schedules,andhealthcareconsistentwithhis/herinterests,assessmentsandplansofcare;2)Interactwithmembersofthecommunitybothinsideandoutsidethefacility;and3)Makechoicesaboutaspectsofhisorherlifethataresignificanttotheresident.Providersaretobeactivelyseekingpreferences,choiceoverschedulesimportanttotheresidenti.e.waking,eating,bathing,retiringandstatesifresidentisunawareoftherighttomakesuchchoicesdetermineifhomehasactivelysoughtresidentpreferenceinformationsharedwithcaregivers.93

TagF280Participationplanningcareandtreatment–Theresidenthastherightto‐unlessadjudgedincompetentorotherwisefoundtobeincapacitatedunderthelawsoftheState,participateinplanningofcareandtreatmentorchangesincareandtreatment.Sometimes,aresidentorresident’srepresentativedecidestodeclinemedicallyrelevantdietaryrestrictions.Insuchcircumstances,theresident,facilityandpractitionercollaboratetoidentifypertinentalternatives.[Theresidentorrepresentative]hastherighttomakeinformedchoicesaboutacceptingordecliningcareandtreatment.94

Therighttomakeinformeddecisionsmeansthatthepatientorpatient’srepresentativeisgiventheinformationneededinordertomake“informed”decisionsregardinghis/hercare.95

RelevantResearchTrends

Nursinghomeresidentsvaluecontrolandchoiceonaspectsoftheirdailylivesincludingfood.96,97,98

ResidentsconsumedagreaterproportionoffoodwhentheywerefedbyCNAswhohadlessneedforpowerandallowedtheresidenttocontroltheinteraction.99

93CMSStateOperationsManualAppendixPP,483.15(b)Tag242Self‐determinationandparticipation.94CMSStateOperationsManualAppendixPP483.25(i)TagF325Nutrition.95CMSStateOperationsManualAppendixAHospitalsSurveyProtocol,RegulationsandInterpretiveGuidelinesforHospitals,A‐0049482.13(b)(2).96Kane,R.A.etal.“EverydayMattersintheLivesofNursingHomeResidents:WishforandPerceptionofChoiceandControl,”JournaloftheAmericanGeriatricsSociety,45,No.9,1997,1086‐1093.97EvansBCandCroganNL.UsingtheFoodEx‐LTCtoassessinstitutionalfoodservicepracticesthroughnursinghomeresidents’perspectivesonnutritioncare.JGerontolMedSci,2005,60A,125‐128.98WestGE,OulletD&OuletteS.Residentandstaffratingsoffoodservicesinlong‐termcare:implicationsforautonomyandqualityoflife.JApplGerontol2003;22(1),57‐75.99MezeyM,FulmerT,Amella,E.FactorsInfluencingtheProportionofFoodConsumedbyNursingHomeResidentswithDementia.JournaloftheAmericanGeriatricsSociety,Volume47,Issue7,Nov.1999.

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Autonomyinrelationtofoodsuchasaccesstofoodbetweenmealsandhavingfoodsbroughtinbyfamilyandfriendshasapositiveassociationwithqualityoflifeforresidents.100Whenresidentswereaskedtomakealistofthoseaspectsoftheirlivesthatweremostimportanttotheirqualityoflife,theyidentifiedchoiceofdiningcompanionsandwheretoeattheirmealsastheirtoppriorities.101Bulkfoodservice(steamtable/buffet)andahome‐likeenvironmentoptimizeenergyintakeinindividualsathighriskformalnutrition,particularlythosewithlowbodymassindexandcognitiveimpairment.102Snackingisanimportantdietarybehavioramongolderadults…(and)mayensureolderadultsconsumedietsadequateinenergy.Snacksprovideover25%ofresidentenergyintakeand14%ofproteinintake.103Makingfoodavailable24hoursadayisrecommendedinthe2000MalnutritionandDehydrationinNursingHomes:KeyIssuesinPreventionandTreatmentresearchstudyasoneapproachtothepreventionandtreatmentofmalnutritionanddehydrationinnursinghomeresidents.104Personswithmildtomoderatecognitiveimpairment(i.e.MiniMentalStateExamscores13‐26)areabletorespondconsistentlytoquestionsaboutpreferences,choicesandtheirowninvolvementindecisionsaboutdailyliving,andtoprovideaccurateandreliableresponsestoquestionsaboutdemographics.105

100CarrierN,WestGE,OuelletD.Diningexperience,foodservicesandstaffingareassociatedwithqualityoflifeinelderlynursinghomeresidents.TheJournalofNutrition,HealthandAging,Vol.13,No.6,2009.565‐570.101CohnJ&SugarJA.Determinantsofqualityoflifeininstitutions:perceptionsoffrailolderresidents,staffandfamilies.In:BurrenJF,LubbenJF,RoweJC&DeutschmanDE,Theconceptandmeasurementofqualityoflifeinthefrailelderly.AcademicPress,Inc.Chapter2.102Desaietal,ChangesinTypesofFoodserviceandDiningRoomEnvironmentPreferentiallyBenefitInstitutionalizedSeniorswithLowBodyMassIndex,2007.103Zizza,C.A.,F.A.Tayie,andM.Lino.“BenefitsofSnackinginOlderAmericans.”JournaloftheAmericanDieteticAssociation,Vol.107,2007,800‐806.104Burger,S.G.JKayser‐JonesandJ.P.BellMalnutritionandDehydrationinNursingHomes:KeyIssuesinPreventionandTreatmentTheCommonwealthFund2000.105Feinberg,LynnFrissandCarolJWhitlatch,ArePersonswithCognitiveImpairmentabletoStateConsistentChoices?TheGerontologist,Vol.41,No.3,374‐382.

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Thereisnowayofknowingwhetherfamilysurrogates,formalorinformal,accuratelyrepresentthewishesoftheolderpersonwithdementia.106Familymembers’andolderresidents’ratingsoftheservicesofbothnursinghomesandassistedlivingfacilitiesreveallittlecongruence.107,108CurrentThinkingChoiceoffoodhasatremendousimpactonqualityoflife.Somemightsayitdefinesqualityoflife.109Foodsofchoiceareavailablewheneverresidentsarehungry,notjustatscheduledmealtimes.Andwhentheylongforaspecificfood,itisavailable.Foodsofchoiceareavailable24/7andsomeoneisavailable24/7topreparethem.110Simplyspeaking,itisallaboutchoice.Itisassimpleasasking,“Whatdoestheresidentwant?Howdidtheydoitathome?Howcanwedoithere?”Choiceofwhattoeat,whentoeat,wheretoeat,whomtoeatwith,howleisurelytoeat.Truechoice,nottokenchoice.Notthewin‐losechoicebetweenahotbreakfastandsleepingtotherhythmofyourday.Notsimplythechoiceofhotorcoldcereal,butalsotheraisinsandbrownsugarthatmakeoatmealadailypleasure.Fordining,truechoiceisexemplifiedinpoint‐of‐servicechoice...(Ibid).Developapproachestodiningthatreflectaviewofeldersascapableofmakingchoicesanddecidingwhat,when,andwithwhomtodineasamentalwellnessactivitybecauseit“exercises”thedecisionmakingcircuitryofthebrain,enhancespleasure,andstrengthensmemoryencodingandretrieval.111Thereneedstobeanew“redflag”or“assumption”forbothsurveyorsandprovidersthatatraylineorset/limitedmealtimesarenowviewedasanobviouscontradictionofchoiceandifthislackofchoiceleadstofailuretothriveitwouldbeconsideredharmduringthesurveyprocess(CHrecommendation).Thereneedstobeanothernew“redflag”wherebyanynotationinaresidentrecordorcareplanofaresidentas“non‐compliant”withphysicianordersisviewedasanobviouscontradictiontoresidentchoicewithashifttofacilitynon‐compliancewithrequirementsto

106Kane,R.L.andR.A.Kane,“WhatOlderPeopleWantfromLong‐TermCareAndHowTheyCanGetIt.”HealthAffairsNov./Dec.2001107Kane,R.A.etal,FirstFindingsfromWave1DataCollection:Measures,IndicatorsandImprovementofQualityofLifeinNursingHomes(Minneapolis:DivisionofHealthServicesResearchandPolicy,SchoolofPublicHealth,UniversityofMinnesota,2000..108Levin,C.A.ResidentandFamilyPerspectivesonAssistedLiving.DoctoralThesis,Univ.ofMinnesota,2001.109LeibleandWayne,TheRoleofthePhysicianOrder,paperwrittenforCHII2010.110Bump,Linda.TheDeepSeatedIssueofChoice,paperforCHII2010.111Ronch,Judah.FoodforThoughtpaperforCHII2010.

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offerchoiceattag242,righttorefusetreatmentattag155andrighttosamerightsasanycitizenoftheUnitedStatesatTag151(CHIIRecommendation).

Everyone,providercommunity,alldisciplines,MDSCoordinatorsidentifyinassessmentandoncareplansaperson’spreferencesmoresothanproblems,distinguishingbetweentruemedicalproblemsandpersonalpreferencesusingthenewguidanceatTag242“activelyseekingpreferences”toguideallofus.Createanewstandardofpracticethatcareplansidentifyfamiliarandmeaningfulfoodspreferred(CHIIRecommendation).Themajorityofnursinghomeresidentsareabletoreliablyanswerquestionsabouttheirsatisfactionwiththefoodservice,regardlessofcognitivestatus,andthepresenceofcomplaintsisrelatedtopoormealintakeanddepressivesymptoms.112

Informedchoiceimpliesthatsomeoneinformedtheperson,thisisthefacility’sresponsibility:risksofcertainchoices,benefitsofcertainchoices,education.However,itnowsoundslikewhatwe’vebeenteachingtobetherisksofchoosingnotfollowingacertainrestricteddietmaynotbetrueafterall.Ifthereisnoevidencethatrestricteddietsactuallybringabouttheoutcomeswethoughttheydid,thenwereallydonotknow.Betteryetwouldbebasingprobabilityonwhattheindividual’sbaselineandhistoryshowsriskforthatpersontobe.113

Themedicaldirectorshouldworkcloselywiththeregistereddietitian,directorofnursingandthedirectoroffoodservicestodevelopasystempromotingresidentchoicewhilemaintainingqualityofcare.Thissystemshouldincludepoliciesthatpromoteroutineuseofaregulardietwhilemaintainingopportunitiesfordiscussionoftherisksandbenefitsofdietchoicesthatarefelt,byconvention,toplacetheresidentatrisk.Thefacilitymustprovideevidenceoftheeducationthatwasofferedtotheresidentandthefamilyaswellasdocumentationofthediscussionoftherisks.Aperiodicreviewoftherisksassociatedwiththeresident’schoicesshouldbeconductedwiththeresidentandhis/herfamily.Itisimperativetheresident’sphysicianbeinvolvedinthesediscussions.114Thefacilityshouldattempttoofferlessriskyalternativestofoodchoicestheresidentmayrequest.Offeringicecreaminsteadofacookiemaysatisfythedesireforadessertwhilemaintainingasaferconsistency.Thefacilitymustplanfortheresident’schoice,notingwaystomonitorandprovideforsafety,suchasofferingtocutmeatintosmallpiecesatmeals,recognizingtheresident’sabilitytodeclinetheoffer.Aninformedconsentbytheresidentdoesnotmitigatethefacility’sresponsibilitytokeeptheresidentassafeastheresidentandhis/herfamilyallowbasedoninformedchoice(Ibid).

112Simmons,SandraF.,PatrickCleeton,andTraceyPorchak.“ResidentComplaintsabouttheNursingHomeFoodService:RelationshiptoCognitiveStatus.”JournalofGerontology:PsychologicalSciences,Vol.10,2009.113Bowman,Carmen.TheFoodandDiningSideoftheCultureChangeMovement:IdentifyingBarriersandPotentialSolutionstofurtheringInnovationinNursingHomesBackgroundPaperfortheFeb.2010CHII.ReportofCMSContractHHSM‐500‐2009‐00057P.114LeibleandWayne,TheRoleofthePhysicianOrder,paperwrittenforCHII2010.

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DefiningHealth‐RelatedQualityofLifeSubjective

Measuredfromthepatient’sperspectiveafterinformededucationaboutillnessandtherapy(emphasisadded)

Multidimensionalsenseofwell‐being(commonlyagreedonbyauthors)Functionalwell‐being:energylevelandabilitytoparticipateinactivitiesofdailyliving,includingworkandleisureEmotional:comprisesbothpositive(peaceofmind,happiness)andnegative(depression,anxiety)moodsPhysicalwell‐being:bodysymptomsofpain,dyspnea,dysphagia,nausea,fatigueTreatmentsatisfaction(emphasisadded):includesfinancialcostsSocialfunctioning:theabilitytoengageinsocialactivitiesIntimacy:concernsofbodyimageandsexualityFamilywell‐being:abilitytomaintaincommunicationandfamilyrelationships.115

Theelder’srighttohavealiberalizeddietoreventheeliminationofcaloricandotherdietaryrestrictionshasslowlybeenembracedtoenhancequalityoflife.Butmany…interdisciplinaryteam[s]resisttheelder’srighttohaveaninformedrefusalofanordereddiet(texturemodifiedortubefeeding)thatmightputthemataspirativeandchokingrisk.Oftenthisisbaseduponthelongheld,preconceivednotionthatfederalregulatoryrequirements(andpossibilityofadeficiencyfinding)areforsafetyfirst,andqualityoflifedecisionstakeasecondseatafterthat.ItisalsobaseduponyearsofNOTinformingtheresidentthatthesechoiceswerehis/herrightsandNOTincludingtheresident’svoiceorpreferenceinthedietaryplanninganddecisionmaking.Yet,theFtag151federalrequirementstatesitsintentregardingthefacility’sresponsibilitiestowardrights:“Exercisingrightsmeansthatresidentshaveautonomyandchoice,tothemaximumextentpossible,abouthowtheywishtolivetheireverydaylivesandreceivecare.”Thisincludestherightofrefusalofanorderedmedicaltherapyordiet.Thesurveyoristo“Paycloseattentiontoresidentorstaffremarksandstaffbehaviorthatmayrepresentdeliberateactionstopromoteortolimitaresident‘sautonomyorchoice.”Eachfacilitymustanswerthequestions:Howistheresidentinformedaboutdietary/diningrights?Doestheresidenthaveavoiceorisitlimited?Isthereeducatingandinformingtheresidentaboutalternativesandconsequencesofchoices?Isthereamutuallyagreeduponplanrecognizingtheresident’schoice?Isthereadequateresidentsupportandmonitoringoncethatinformedrefusalismade?Rememberthechallengeswhentherewerefederalmandatesofremovingphysicalandchemicalrestraintsforaresident’squalityoflife?Therewillalwaysbesafetyissuesandconcerns.Wearefacingsomeofthesamechallengesinsupportingaresident’sinformedrefusalandrightofchoice.116PutresidentchoicebeforeregulationsandguidelinessuchasRecommendedDailyAllowanceswhicharegenericestimatednutritionalneedsandnon‐individualized(CHIIRecommendation). 115McMahon,MM,Hurley,DL,Kamath,PS,Mueller,PS.MedicalandEthicalAspectsofLong‐termEnteralTubeFeeding.MayoClinProcNov.2005;80(11):1470mayoclinicproceedings.com/content/80/11/1461.full.pdf116Handy,Linda.CultureChangeinDiningandRegulatoryCompliance,http://www.handydietaryconsulting.com2011.

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Residentswhohavecapacitytodecideshouldnotbedeniedthechoicetoeathotdogsorgrapeswholewhichmanyhomesandcompaniesareimposingtominimizethepotentialchokingrisk(CHIIRecommendation).“I’mafirmbelieverintherightsofelderstodowhateverthehelltheywant.Ifyouonlyhavetherighttomakethe‘good,wise’decisionsthatyourgrowndaughteragreeswith,thenyou’renotrunningyourownlifeanymore.I’vetakencareoflotsofpeoplewhodidn’tevenknowtheirownchildren.Sure,theyprobablyshouldn’tbemakingdecisionsabouttheir401(k)plans,buttheycandecidewhattowearandwhattoeatandwhethertogooutsideonadailybasis.Peoplethinkthatifoldpeoplecannotmakethebigdecisions,theycannotmakeanydecisions—andthatisjustwrong.Theyhavetherighttofolly.”117ProvideeducationtothewholeclinicalteamonhowtonegotiateriskwiththeElderwhentheirlifegoalsarecontrarytobestmedicalpractices.Healthcareprofessionalsneededucationindeterminingnutritionalrisk,conductingcomprehensivenutritionalassessments,developingandexecutingnutritionalinterventions,andevaluatingnutritionaloutcomes.Weneedtomakesurethattherisksandthebenefitsarebeingdiscussedwithresidentsatthesametimethatwe’reaskingfortheirchoicesandpreferences(CHIIRecommendation).Whencaringforfraileldersthereisoftennoclearrightanswer.Possibleinterventionsoftenhavethepotentialtobothhelpandharmtheelder.Thisiswhythephysicianmust…explaintherisksandbenefitstoboththeresidentandinterdisciplinaryteam.Theinformationshouldbediscussedamongsttheteamandresident/familyandonlythenshouldanagreeduponchoicebemade.Itiswhentheteammakesdecisionsforthepersonwithoutagreementbyallthatproblemsarise.Theagreeduponplanofcareshouldthenbemonitoredtomakesurethecommunityisbestmeetingtheresident'sneeds.118

RecommendedCourseofAction

• Choiceswithmeaningfuloptionsinaccordancewiththeperson’spreferencesareofferedtoeachresidentnumeroustimesdaily,i.e.whentoawaken,whentoeat,whattoeat,wheretoeat,whattodo,whentobathe,whentoretire,whattowear,etc.

• Avarietyandincreasednumberofstaffpresentinthediningroomenablesboth

physicalandpsychosocialneedstobemet.Additionally,staffcanenhanceandhonortheindividualchoicesforallresidentsreflectiveofpreferences.

117Dr.WilliamThomasasreportedbyBrown,NellPorter.“AtHomewithOldAgeReimaginingNursingHomes”HarvardMagazineNovember–December2008TheAlumni,http://harvardmagazine.com/2008/11/at‐home‐with‐old‐age.html.Accessed10/15/09.118Wayne,Matthew.ClinicalStandardsTaskForcecommunication,2011.

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• Thereneedstobeanew“redflag”or“assumption”forbothsurveyorsandprovidersthatatraylineorset/limitedmealtimesarenowviewedasanobviouscontradictionofchoiceandifthislackofchoiceleadstofailuretothriveitwouldbeconsideredharmduringthesurveyprocess(CHIIrecommendation).

• Residents’individualchoicesareactivelysoughtafter,careplannedandhonored,asTagF242requires,basedonlifepatterns,historyandcurrentpreferences.

• TeammembersofalldisciplinesandMDSCoordinatorsidentifyinassessmentandon

careplansaperson’spreferencesmoresothanproblems,distinguishingbetweentruemedicalproblemsandpersonalpreferencesusingthenewguidanceatTag242“activelyseekingpreferences”toguideallteammembers.Createanewstandardofpracticethatcareplansidentifyfamiliarandmeaningfulfoodspreferred(CHIIRecommendation).

• Thereneedstobeanothernew“redflag”wherebyanynotationinaresidentrecordorcareplanofaresidentas“non‐compliant”withphysicianordersisviewedasanobviouscontradictiontoresidentchoicewithashifttofacilitynon‐compliancewithrequirementstoofferchoiceatTag242,righttorefusetreatmentatTag155andrighttosamerightsasanycitizenoftheUnitedStatesatTag151(CHIIRecommendation).

• Insteadoflabelingoneas“non‐compliant,”nursesworkwithphysicianstoeliminate“orders”forrestrictivedietsresidentsdon’teatandinsteadcreateplanswiththepersonthatworkfortheperson(seestandardsforvariousdietsinDietLiberalizationsection).

• Whencaringforfraileldersthereisoftennoclearrightanswer.Possibleinterventions

oftenhavethepotentialtobothhelpandharmtheelder.Thisiswhythephysicianmustbepresent[involved]inordertoexplaintherisksandbenefitstoboththeresidentandinterdisciplinaryteam.Theinformationshouldbediscussedamongsttheteamandresident/familyandonlythenshouldanagreeduponchoicebemade.Itiswhentheteammakesdecisionsforthepersonwithoutagreementbyallthatproblemsarise.Theagreeduponplanofcareshouldthenbemonitoredtomakesurethecommunityisbestmeetingtheresident'sneeds.119

• Provideeducationandsupporttoanyonespeakingonbehalfoftheresident,including

healthcareprofessionals,families,friends,andlegalrepresentativeontheirobligationinadvocatingfortheresident’s/theperson’sindividuallifepatterns,history,currentpreferences,opinionsandwishes(notnecessarilytheirown).Educationshouldbeinclusivesothattherepresentativesclearlyseetheirroleasanadvocatefortheindividual’schoice(notnecessarilytheirown).

119Wayne,Matthew.ClinicalStandardsTaskForcecommunication,2011.

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• Wedonotassumethatjustbecausearesidentmaynotbeabletomakedecisionsinsomepartsoftheirlifetheycannotmakechoicesrelatedtotheirdiningpreferences.Education,goodobservationalskills,strongadvocacyandconsistentrelationshipswithcaregiversenablesapersonwithimpaireddecisionmakingcapacitytomakechoices.

• Whenmakingdiningdecisionsthatcanbeviewedasarisktotheindividual’sphysical

health,theplanofcarewillbeadjustedtohonorchoiceandprovidethesupportsavailabletomitigatetherisksbasedupontheindividual’slifegoals.

• PutresidentchoicebeforeregulationsandguidelinessuchasRecommendedDaily

Allowanceswhicharegenericestimatednutritionalneedsandnon‐individualized(CHIIRecommendation).

• Residentpreferencesindiningwillbecommunicatedtotheentireinterdisciplinaryteamsothatmedicationsandtreatments,schedulesandfoodofferedatactivitiesareconsistentwithchoiceshonoringpersonalpreferences.

• Residentdiningprofiles(traytickets)shouldbelimitedtoadaptedequipment,allergies,

consistencymodificationanduniquedietaryneeds.Preferencesshouldbesoughtafteraschoicesareoffered(notjustonceandthenrecordedonatrayticketindefinitely).

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StandardofPracticeforShiftingTraditionalProfessionalControltoIndividualizedSupportof

SelfDirectedLiving

BasisinCurrentThinkingandResearchAMDA:Person‐directedcarepromotesresidentchoiceandself‐determinationinwaysthataremeaningfultotheresident.Ithasbeenakeycomponentofgeriatricmedicinefordecades.Theinterdisciplinaryteamandthemedicaldirectorhaveessentialrolesbothinfacilitatingthisprocessaswellasinmonitoringitfordesiredoutcomes.Medicaldirectorsandcliniciansshouldhelpnursinghomeadministrationandstaffunderstandhowtoprovideperson‐directedcarewhilemaintainingclinicalexcellence.Toensuresuccess,nursinghomeleadershipmustsupporttheseefforts.120ADA:Despitethegrowingbodyofevidencediscouragingtheuseoftherapeuticdietsinolderadults,thesedietsarestillregularlyprescribed.Researchhasnotdemonstratedbenefitsofrestrictingsodium,cholesterol,fat,and/orcarbohydrateinolderadults.121CMS:Residentshavetherighttorefusetreatment,CMSTagF151.Residentshavetherighttoinformedchoice,CMSTagF325.Residentshavetherighttochoice,CMSTagF242.PioneerNetwork/HartfordInstituteforGeriatricNursing:NurseCompetenciesforNursingHomeCultureChange–#2–Createssystemsandadaptsdailyroutinesand“person‐directed”carepracticestoaccommodateresidentpreferences.#4–Evaluatesthedegreetowhichperson‐directedcarepracticesexistinthecareteamandidentifyandaddressesbarrierstoperson‐directedcare.#9–Problem‐solvescomplexmedical/psychosocialsituationsrelatedtoresidentchoiceandrisk.#10–Facilitatesteammembers,includingresidentsandfamilies,insharedproblem‐solving,decisionmakingandplanning.

RelatedResearchTrendsAsweknowthatresidentshavetheirveryindividualbiographyofnutritionandareexpertsinpreparingmeals,thecookmeetseveryweekwithsmallgroupsofresidentsdiscussingavarietyoffood‐andmeal‐relatedtopics.Theideaisthecookgetstoknoweachindividualresidentandlearnsabouttheirwishes,theirexpectations,theirskills,andtheirexpertise….Whatwe

120AMDATheRoleoftheMedicalDirectorinPerson‐DirectedCareWhitePaper,Mar.2010,5.121ADAPositionPaperIndividualizedNutritionApproachesforOlderAdultsinHealthCareCommunities2010.

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observeinthesesettingsisthatlifebecomesnormal,livelier,thatresidentseatmuchbetterandthatloneliness,helplessnessandmonotonyarereduced.Residentsneedlessmedicineandsleepmuchbetter.122CurrentThinking

…thepeoplewiththepowerremainthebiggestbarriertomeaningfulculturechangeinlong‐termcare.Theyaretooeasilysatisfied.Evenastheygravitatetowardthisnewway,theiroldwayofthinkingissostrongitkeepsleadersfromtrulychangingtheorganizationandempoweringteams.Theoldmindsetmakesuswaytoosatisfiedwiththelow‐hangingfruit–thosepositiveoutcomesthatinevitablyresultfromevenmodestchanges.Becauseevensmallimprovementsaresomuchbetterthantheoldway,itiseasytobecomecomplacentandavoidthereallydifficultworknecessarytocreatetruehomeforelders.123Unfortunately,theseevidencebasedguidelinesarenotyetwidelyacceptedasstandardsofpractice,andevenmoreunfortunately,standardsoftraditionalbestpracticedevelopedforindividualsatearlierstagesofthelifecyclearecurrentlyappliedtoelders,oftenlimitingtheirchoices,limitingtheirqualityoflife,whilewell‐meaningpractitionerspracticeamedicalmodelofcare(Ibid).Lifeextensionwithmedicallyadvancedtreatmentsorimposedchronicconditionmanagementatanadvancedagenegatingchoiceorsatisfactionoftenleadstonegativeoutcomesthatarethenmanagedwithmoreliberalapproachesthatshouldhavebeentheapproachfromthebeginning(Ibid).Establishguidelinesthatdefineanelder’srighttomakeanunpopularorill‐adviseddecisioninviewofallavailableinformationabouttheimpactofthedecisiononhis/herfutureself(“therighttofolly”)versuscognitive,emotionalorotherconditionsthatrenderhim/hervulnerabletoexploitation,abuseorneglect.Thisshouldbebasedonimaginingfuturescenariosthatresultfromthedecisionandhowtheelderappreciatesandplansfortheimpactonhis/herwellbeing.124Weallneedtoshifttoagreeingthatcaregiverswilloffertodowhatisclinicallybestforapersonandifthepersonrefuses,that’sokay.Alongwithliabilitycomesresponsibilitytothepersonwe’reserving–ifanelderdecidestonoteatwhatisclinicallybestweworkwiththembutneverforcethem–caringforsomeonedoesn’tmeanyouhavetomakethechoicesforthem(CHIIRecommendation).Anotherlevelofeducationisneededforcliniciansandcaregiverstobeabletoshifttraditionalprofessionalcontrolovertotheresidentsinceitfeelslikewe’regoingagainstwhatwehave 122Hoffmann,AT.QualityofLife,FoodChoiceandMealPatterns–FieldReportofaPractitioner.Ann,NutrMetab2008;52(suppl1):20‐24.123Bump,Linda.TheDeepSeatedIssueofChoicepaperforCHIIFeb.2010.124Ronch,Judah.FoodforThought:TheMissingLinkbetweenDiningandPositiveOutcomes,paperforCHII2010.

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believedtobeourobligationorevenanursinglicenseofwhat“goodcare”iswhichwenowrealizehasbeenmakingdecisionsforresidentsandnothonoringtheirdecisions(CHIIRecommendation).Self‐directedlivingincludeshonoringtheresident'schoiceeveninthefaceoffamilydisagreement.PowerofAttorneydoesnotgivetherighttodemandrestricteddietsoralteredconsistencies.Evenwithaguardianship,afamilymembershouldworkcloselywiththephysiciantoassessallrisksincludingtheriskofmorerestrictivechoice,orinotherwords,ofnothonoringtheresident'schoice(CHIIRecommendation).Attimesthelifegoalsshouldsupersedemedicalbestpractices.Recommendationsshouldbebasedonwhateachelderwants,notwhatwewouldwantforourselvesorwhatwethinktheelderwants.125

Whilealcoholisnotamedicaltreatmentitmaypresentcertainrisks.Itisforsomeeldersalifestylechoice.Duetopotentialforinteractionswithmedicationsandcertainclinicalconditionstheelder’sphysicianshouldbeconsultedregardingtheelder’schoicetoenjoyanalcoholicbeverage.Ifthereareconcernsregardingmedicationsoreffectsonillnessthereisaopportunitytoprovideinformationtotheelderorhis/herfamilyaboutthepotentialrisks.Theclinicianmaychoosetomakechangesinthemedicationregimentoaddresspotentialconcerns.Thereisanopportunitytooffernon‐alcoholicdrinkswhentherisksareconsideredtobehigherthanthepotentialbenefit.Ittheelderandhisorherfamily’srighttomakeaninformedchoice.126Ifthepatientissufficientlyinformedabouttherisksandbenefitsofacceptance(informedconsent)orrefusal(informedrefusal)ofaproposedinterventionortreatmentandrefuses,theclinicianshouldrespectthepatient’sdecision(MayoClinicProceedings2005).127

RecommendedCourseofAction


125Hyde,Denise.TheRoleofthePharmacistpaperwrittenfortheCHII2010.126Power,Al.ThePhysicianandPerson‐DirectedDining,unpublished,April2011.127McMahon,MM,Hurley,DL,Kamath,PS,Mueller,PS.MedicalandEthicalAspectsofLong‐termEnteralTube

Feeding.MayoClinicProceedingsNov.2005;80(11):1461‐1476.

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NewNegativeOutcomeBasisinCurrentThinkingandResearchAMDA:“Person‐directedcare”isaphilosophythatencouragesbotholderadultsandtheircaregiverstoexpresschoiceandpracticeself‐determinationinmeaningfulwaysateverylevelofdailylife.Valuesthatareessentialtothisphilosophyincludechoice,dignity,respect,self‐determinationandpurposefulliving.Thesevaluesalsoareatthecoreofdesirablemedicalcareandareembracedbymanymedicalproviders.Yetpracticesthatconflictwiththeseprinciplesarecommoninthelongtermcaresetting.Examplesincludeawakingresidentsattimesthataredeterminedbystaffconvenience,modifyingresidents’dietswithoutdiscussion,andinflexiblemealtimesandmedicationpasstimes.Inaddition,careplansmaybecreatedwithouttrulyunderstandingaresident,theirhistoryorpreviousoccupation,theirrecreationalandpersonalpreferences,wishesregardinglife‐sustainingtreatment,andotherlikesanddislikes.Geriatricsisadisciplinethatemphasizesmedicalcareinthepropercontext,includingitsimpactonfunction,qualityoflife,andpersonalpreferences.128ADA:Formanyolderadultsresidinginhealthcarecommunities,thebenefitsofless‐restrictivedietsoutweightherisks.Whenconsideringatherapeuticdietprescription,ahealthcarepractitionershouldask:Isarestrictivetherapeuticdietnecessary?Willitofferenoughbenefitstojustifyitsuse?129CMS:TagF325Nutrition,DeficiencyCategorizationSeverityLevel4‐ImmediateJeopardy:

Substantialandongoingdeclineinfoodintakeresultinginsignificantunplannedweightlossduetodietaryrestrictionsordowngradeddiettextures(e.g.,mechanicsoft,pureed)providedbythefacilityagainsttheresident’sexpressedpreferences.

SeverityLevel3‐ActualHarm:

Unplannedweightchangeanddecliningfoodand/orfluidintakeduetothefacility’sfailuretoassesstherelativebenefitsandrisksofrestrictingordowngradingdietandfoodconsistencyortoobtainoraccommodateresidentpreferencesinacceptingrelatedrisks;

128AMDATheRoleoftheMedicalDirectorinPerson‐DirectedCareWhitePaper,Mar.2010,1.129ADAPositionPaper:IndividualizedNutritionApproachesforOlderAdultsinHealthCareCommunities,2010.

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RelevantResearchTrendsCaregiversoftenfearthatresidents’mealtimechoiceswillresultinnegativeoutcomes.Mealtimediningstudiesprovideevidencethatenablingresidentstochoosewhattheywanttoeatatmealtimedoesnotresultinnegativenutritionaloutcomes.Enablingchoicecanincreasenutritionalintakeandincreaseresident,familyandcaregiversatisfaction.130,131,132,133Moreover,thesestudiesdemonstratethatusualcare,whichdoesnotprovideforresidentchoice,whencomparedtodiningpracticesthatenablechoice,canresultinnegativeoutcomessuchasworseningofnutritionalmarkersandqualityoflifeindicators.Ongoingdiscussionsofwhereresidentsareonthehealthillness/trajectoryandmodificationsofcaregoalsareessentialtoprovidingperson‐directedcare.Thehealthcareteamneedstorecognizewhenthegoalofnutritionalcareisnolongerpreventionorrestoration,butrathercomfortandpalliation.Identifyingwhentoshiftpracticestosupportpalliativenutritionwillensuretheresidentreceivesqualitycareattheendoflife.Continuingtoprovideactiverestorativenutritionalcarewhenitislikelytohavelimited,ifanyeffectonthewell‐beingoftheresident,cancreategreatdistressfortheresident,familyandcaregivers.134

FromresearcherpsychologistsEllenLangerandJudithRodin:

Ihadrecentlycompletedresearchontheillusionofcontrol,whichshowedmehowimportantitwasforpeopletocontroltheirownlives.Itwassoimportantthateveninchance‐determinedsituations,peoplewouldnotrelinquishtheircontrol.Therefore,withtheslightestprovocation,theyengagedinillusorycontrolbehavior.Aroundthissametime,Iwasvisitingmygrandmotherinanursinghome.Iwasstruckbyhowlittlecontrolsheandtheotherresidentswerepermitted.Ithoughtthiswasoutrageous.Howcould‘they’besosuretheyknowbetterthanthesepeople?Ithoughtallfactswereprobabilisticstatementssotheircertaintybotheredme.Letmegiveyouanexampletomakethisclearer.Shouldanelderlydiabeticbeallowedtohaveicecream?Therelationshipbetweendiabetesandsugarisprobabilisticeventhoughitistreatedbymanypeopleasabsolute.Whetherornotthaticecreamwill

130Remsburg,R.E.,Luking,A.,Baran,P.,Radu,C.,Pineda,D.,Bennett,R.G.,Tayback,M.2001.Impactofabuffet‐stylediningprogramonweightandbiochemicalindicatorsofnutritionalstatusinnursinghomeresidents:apilotstudy.JAmDietAssoc,101(12),1460‐3.131Nijis,K.A.N.D.,deGraff,C.,Siebelink,E.,Blauw,Y.H.,Vanneste,V.,Kok,F.J.,vanStaveren,W.A.2006.Effectoffamily‐stylemealsonenergyintakeandriskofmalnutritioninDutchnursinghomeresidents:Arandomizedcontroltrial.JGerontolABiolSciMedSci,61(9),935‐42.132Nijis,K.A.N.D.,deGraff,C.,Kok,F.J.,vanStaveren,W.A.2006.Effectoffamilystylemealtimesonqualityoflife,physicalperformance,andbodyweightofnursinghomeresidents:Clusterrandomizedcontrolledtrial.BMJ,10,1‐5.133Ruigrok,J.&Sheridan,L.2006.Lifeenrichmentprogramme:Enhanceddiningexperience,apilotproject.InternatJofHealthCare,19(5),420‐429.134Remsburg,Robin.Home‐styleDiningInterventionsinNursingHomes:ImplicationsforPractice.PaperforCHII2010.

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hurtthepersondependsonwhatelsewaseatenthatday,howmuchicecreamisconsumed,whetherornotthepersonhasexercised,andsoon.Recentevidence,infact,suggeststhatnosugarismoredangerousthanasmallamountofsugar.Regardlessofthefindings,however,Ithinknursing‐homestaffshouldmakerecommendations,butleavethefinaldecisionuptotheresident.Onecannotknowtodaywhat“facts”willturnuptomorrow.IapproachedJudyRodinatYale,whowasalsoworkingintheareaofcontrolatthistime.Shetoofeltthatthispopulationwascharacteristicallydeniedtheopportunitytoexercisecontrol.Togetherwevisitedlocalnursinghomes.…Theexperimentweconductedwassuccessful.Psychologically,controlprovedtobeapotentvariable.Thefollow‐upshowedusthatcontrolwasalsoimportantphysiologically.Halfasmanypeoplegivenourcontrolinterventionhaddied18monthslaterthanthosegivenacomparisontreatment.Becausethelongevityfindingsweresodramatic,I’vespentagooddealoftimetryingtounderstandhowsuchasimpletreatment(apeptalkencouragingdecisionmaking,afewdecisions,andaplanttotakecareof)couldhavesuchaprofoundeffectonpeople.Theexperimentalgroupalsoshowed“asignificantimprovementoverthecontrolgroupinalertness,activeparticipation,andgeneralsenseofwell‐being.”135

CurrentThinkingProfessionalstandardsdirectnursestoacttopreventunsafe,illegal,andunethicalpracticesandprotectpatientswhomaybeatrisk.136Nursesareeducatedtolookforerrorsinmedicationandtreatmentorders,andtolookforadverseoutcomesrelatedtomedicationandtreatments.Whenaresidentrefusesamedicationortreatment,thephysicianispromptlynotified.Sometimesthisstandarddoesnottranslateintootheraspectsofcare,suchasactingonevidencethatnutritionpracticesarenotachievingintendedoutcomes.Whenaresidentrefusesamealfoodorisobservedconsumingminimalamountsoffood,promptactionisneeded.Usingcurrentpracticestandards,physiciannotificationmaynotoccuruntiltheresidentloosesweight.Aproactiveapproach,whichemploysthenursingprocess,forallaspectsofcare,includingnutrition,shouldbethepracticestandard.Thenursingprocess,whichinvolvesassessment,diagnosisofneed,planningofresident’scare,implementation,andevaluationofsuccessofimplementedcare,supportshonoringresidentpreferencesandimplementingdiningpracticesthatsupportchoice.137,138

135Langer,EllenJ.ThisWeek’sCitationClassic:Sept.20,1985.CurrentContents/Number44,November4,1985,14.136AmericanAssociationofCollegesofNursing2008.TheEssentialsofBaccalaureateEducationforProfessionalNursingPractice.Washington,DC:AmericanAssociationofCollegesofNursing.137Remsburg,Robin.Home‐styleDiningInterventionsinNursingHomes:ImplicationsforPractice.PaperforCHII2010.

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TheEdenAlternative®recognizeshelplessnessasoneofthethreeplaguesofinstitutionalization.

Intheinstitutionalsettingstafflearnthatifresidentscooperatewiththeirabilitytohelpthem,itisamoreefficientuseoftheirtime.Thepricepaidisfortheresidenttolearntowaittobehelped.Thissquelchesautonomy,skillsatrophy,residentsbecomeevenmoredependentoncaregivers,andhaveevenlesscontrolovertheirlives.Staff’sstyleofspeechencourageslearneddependency.Intonationisoftensimilartowhatisusedwithchildrenwhichcausesanadulttofeeldevalued.Researchshowsthepersonlosesfaithintheirabilitytoaffectoutcomesintheirownworld.139Notsupportingindividualizedcareandaperson’schoice,notsupporting“therighttofolly,”causeslearnedhelplessness,depression,learneddependency,evenbringingdeathearlier.Wehavenotintendedharmwithourgoodintentions,butwearecreatingit.TheHippocraticOathisknownas“DonoHarm.”140Itisasdifficultasstaringstraightatthesun,butifweasaprofessionaretoinitiateradicalchange,thenwemustbeconsciousofandfocusontheharmthatwedo.Harm–notjusttothebody,buttotheveryperson–issystematicallyembeddedinbureaucraticinstitutionsthatstripeldersoftheirpersonhood.141Theharm,thepotentialharm,weoverlyidentifyandworryaboutistothebody.Whenapersonwillnotfollowrecommendedmedicaladvice,akathephysician’sorder,weworryaboutthephysicalharmitmightcausetheirbody.Noticetoohowitiscalled“againstmedicaladvice”asifthepersonissomehowwrongtogoagainstthephysician’sadvice,againabadperson,“non‐compliant.”Wehaven’tcontemplatedmuchtheharmtothepersonthatresultsfromdenyingthemthisright,therighttogoagainstmedicaladvice,therighttotheirpersonhood,theirlife,theirschedule,theirwishes.Nooneshouldhavetofightfor,cryfororbetoldeveragain,“Youcan’tcomeinthediningroomuntilthedoorsareopen”or“Youcan’thavethisbecauseit’snotonyourdiet.”Wedecideforpeopletheywillonlydrinkdecafcoffee.Wedecideforpeopletheycanonlyeatthisfoodandnoteatthatfood.Ifyouweredeniedyourrightstothisextent,woulditfeellikeabuse,neglect?Partoftheculturechangemovementistocallthingsastheyareandnotlongersugarcoat.142

138PioneerNetwork/HartfordInstituteNurseCompetenciesforNursingHomeCultureChangehttp://www.pioneernetwork.net/Data/Documents/TenCompetenciesReport0510.pdf.139Ronch,Judah2006CMSsatellitebroadcastPsychosocialSeverityOutcomeGuidehttp://www.pioneernetwork.net.140Bowman,TheFoodandDiningSideoftheCultureChangeMovement:IdentifyingBarriersandPotentialSolutionstofurtheringInnovationinNursingHomesBackgroundpaperforCHII2010.141Frank,Barbara,SarahForbes‐ThompsonandStephenShields.“TheWhyandHowofRadicalChange.”NursingHomes/LongTermCareManagement,May2004,44‐47.142Bowman,BackgroundpaperforCHII2010.

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TheReasonablePersonConceptisdefinedaswhenaresident’sreactiontoadeficientpracticeismarkedlyincongruentwiththelevelofreactionthereasonablepersonwouldhavetothedeficientpractice(CMS).143Evenifaresident’sreactionisthatitis“fine”forher/hischoicenottobehonoredthisis“markedlyincongruent”withareasonablepersonlikeyouandIlivinginthecommunityatlarge.Ifsomeonegaveusdecafcoffeewhenwewantedcaffeinatedorwokeusupaccordingtowhentheythoughtweshouldgetup,wewouldnotbehappyaboutit…tosaytheleast.Iaskpeoplealloverthecountryhowmanyofthemdonoteveneatbreakfast.Inevitablyhalfthecrowdraisestheirhandswhetherthereare8or800.Halfofusdonoteatbreakfast.Whatisthenumberonedrivingforceineverynursinghomeeverydayforgettingpeopleup?Breakfast.Whydoweevenwakepeopleupatall?Breakfast.Iaskmyhalfacrowdhowtheywouldfeelaboutbeingawakenedfromsleeptoeatamealtheydidn’twant.Theysay“mad”and“angry.”Someoneinevitablysaystheywouldbe“non‐compliant”andadministeredapsychotropicdruginordertobecompliant.Unfortunately,thisisthenorm,accordingtomyaudiences.ThisisUnnecessaryDrugs.Thisisrestrainingapersonfortheconvenienceofstaff,forhonoringwhataCNAoncecalledthe“almightyschedule”nottheperson.Thisisnon‐compliancewiththefederalrequirements.Itisthedawningofanewdaytorealizetherearenegativeoutcomeswearenotconsideringandpeople’shealthandwell‐beingareinthebalance(Ibid).Developapproachestodiningthatreflectaviewofeldersascapableofmakingchoicesanddecidingwhat,when,andwithwhomtodineasamentalwellnessactivitybecauseit“exercises”thedecisionmakingcircuitryofthebrain,enhancespleasure,andstrengthensmemoryencodingandretrieval.144Residentswhoreceivegoodpersonalizedcareandopportunitiesforchoicehavehighermorale,greaterlifesatisfaction,andbetteradjustment(InstituteofMedicine).145


• Allhealthcarepractitionersandcaregivingteammembersofferchoiceineveryinteractionevenwithpersonswithcognitiveimpairmentinordertoensurecontrolremainswiththeperson,highersatisfactionwithlife,improvedbrainhealthandtopreventanyharmfromnothonoringchoicewhichhasbeenproventobringaboutearliermortality.

143CMSPsychosocialSeverityOutcomeGuide,StateOperationsManual,AppendixP,2006.144Ronch,FoodforThought:TheMissingLinkbetweenDiningandPositiveOutcomespaperforCHII2010.145ImprovingtheQualityofCareinNursingHomes.InstituteofMedicine.CommitteeonNursingHome

Regulation.NationalAcademyPress;Washington,D.C.,1986.

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PatientRightsandInformedConsent/RefusalacrosstheHealthcareContinuumOneofthemostthoroughresourcesfoundonthissubjectpertainingtoanyperson’srightsin

anyhealthcaresettingisthefollowingfromthe2005MayoClinicProceedings.

McMahon,MM,Hurley,DL,Kamath,PS,Mueller,PS.MedicalandEthicalAspectsofLong‐termEnteralTubeFeeding.MayoClinicProc.Nov.2005;80(11):1461‐1476. http://www.mayoclinicproceedings.org/article/S0025-6196(11)61440-7/abstractFREQUENTLYENCOUNTEREDCLINICALANDETHICALISSUESThefollowingcaseexamplesillustratefrequentlyencounteredclinicalandethicalquestionsrelatedtolong‐termtubefeeding.IllustrativeCase1.A95‐year‐oldwomanwithmilddementiawashospitalizedwithprogressiveneuromusculardiseaseanddysphagia.Sheexperienceda10%unintentionalweightlossduringtheprior3monthsanddehydrationduetotheinabilitytotakefoodandwaterbymouthfor1week.Videofluoroscopicswallowevaluationrevealedaspirationofallconsistenciesoffoodandliquid.Tubefeedingwasrecommendedbecausepermanenttubefeedingwasanticipated.Thepatientwasalertandorientedtoperson,place,andtime,couldarticulatetherisks,benefits,andalternativestotubefeedingdiscussedwithher,andwishedtoproceedwithpercutaneousendoscopicgastrostomy(PEG).Aftertheprocedure,sheexpressedadesiretoeatsmallamountsoffoodinadditiontoreceivingtubefeeding.Again,shecouldarticulatetherisks(e.g.,aspiration),benefits,andalternativestoeatingsmallamountsoffoodandremainedsteadfastinherdesiretoeat.‐‐ThewordautonomyisderivedfromtheGreekwordsautos(“self”)andnomos(“rule”).Theprincipleofrespectforpatientautonomyisthebasisofinformedconsent.Theelementsofinformedconsentincludeinformation(e.g.,theillness,theproposedintervention,andtherisksandbenefitsofandalternativestotheproposedinterventionincludingdoingnothing),understandingoftheinformation,decision‐makingcapacity,andvoluntaryagreementtotheintervention.‐‐Societyandlawassumethatalladultsarecompetent.‐‐Competenceisalegalterm,andonlyacourtcandeclareapersonincompetent.Incontrast,cliniciansdeterminewhetherapatienthasintactmedicaldecision‐makingcapacity,whichpatientsmusthavetobefullyautonomousandparticipateintheinformedconsentprocess.Althoughnouniversallyacceptedtoolfordeterminingdecision‐makingcapacityexists,numerousgroups,includingtheAmericanPsychiatricAssociation,provideusefulguidelines.Decision‐makingcapacityincludestheabilitytoevidenceachoice(i.e.,toreachadecisionandeffectivelycommunicatethedecision),theabilitytounderstandthenatureofthedecision,theabilitytounderstandandappreciatetherisksandconsequencesofthedecision,andtheabilitytomanipulateinformationrationally.Cliniciansareobligatedtoprotectpatientswithimpaired

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decisionmakingcapacityfrominappropriatehealthcaredecisions.Thepatientinthecaseexamplehadmilddementiabuthadsufficientdecision‐makingcapacityforconsentingtoPEGtubeplacementandtubefeeding.Sheunderstoodandcouldarticulatetheindications,risks,andbenefitsoftheprocedureandvoluntarilyconsentedtoit.Patientswithimpairedcognitionmayhavesufficientdecision‐makingcapacityforspecifichealthcaredecisions.ALGORITHMFORDECISIONMAKING

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Thelevelofdecision‐makingcapacityshouldbeinaccordancewiththerisksandbenefitsofthedecisiontobemade.Forexample,oneshouldbeabsolutelycertainthatapatientwhorefusesalow‐riskyetlife‐savinginterventionhasadequatedecision‐makingcapacity.Thepatientinthecaseexampleexpressedadesiretoeatsmallamountsoffooddespitetheriskofaspiration.Itisethicallyandlegallypermissibleforpatientswithdecisionmakingcapacitytorefuseunwantedmedicalinterventionsandtoignorerecommendationsoftheclinician.Apatient’schoicenottoadheretoaclinician’srecommendationsmaybeatoddswithaclinician’sdesireto“dogood”oravoidharm.Ifthepatientissufficientlyinformedabouttherisksandbenefitsofacceptance(informedconsent)orrefusal(informedrefusal)ofaproposedinterventionortreatmentandrefuses,theclinicianshouldrespectthepatient’sdecision.Inthecaseexample,thepatientplacedahighvalueontheexperienceoftastingevensmallamountsoffoodandonthesocialaspectsofeatingwithothers.TheNutritionSupportServicesdiscussedpotentialrisksofeatingwiththepatient,documentedthediscussion,andsupportedherdecisionbyaskingadietitianandoccupationaltherapisttoworkwithhertodevelopthesafestapproachtoeatingsmallamountsoffood.Regardlessofthedecisionsmade,cliniciansshouldnotabandontheirpatients.Iftheclinicianconscientiouslyobjectstoapatient’sdecision,theclinicianshouldarrangetotransfercareofthepatienttoanotherclinician.‐‐‐Thedurablepowerofattorneyforhealthcareidentifiesasurrogatedecisionmakerwhocanmakehealthcaredecisionsifthepatientnolongerhasdecision‐makingcapacity.Personsalsomayidentifyanalternatesurrogateincasethefirstpersondesignatedisunavailable.Somestateshaveahealthcaredirectivethatcombinesthefeaturesofalivingwillanddurablepowerofattorney….

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Surrogatesmustbefullyinformedoftherisks,benefits,andalternativestoaproposedprocedureortreatment.Surrogatesshouldbasetheirdecisionsonthepatient’spreviouslyexpressedvaluesandgoals(substitutedjudgment).However,aswiththecaseexample,patientsoftendonotdiscusstheirhealthcarevaluesandgoalswiththeirsurrogate.Inthesesituations,surrogatesmustmakedecisionsbasedonwhattheyregardasmostappropriateforthepatient’sclinicalcondition,qualityoflife,andotherfactors(bestinterestofthepatient).Notably,patientsmayregarddesignatingatrustedsurrogateasmoreimportantthantryingtopredetermineallthepossiblefuturemedicalissuesandcircumstancesthatmayrequireadecision.PREVENTINGANDADDRESSINGETHICALDILEMMASTheprimafacieprinciplesthatcharacterizetheethicalaspectsofclinicalmedicinearerespectforpatientautonomy,beneficence,nonmaleficence,andjustice.‐‐Respectforpatientautonomyreferstothedutytorespectpersonsandtheirrightsofself‐determination.‐‐Beneficencereferstotheclinician’sdutytoactforthegoodofthepatient,whereasnonmaleficencereferstothedutytoavoidharmingthepatient.‐‐Justicereferstothedutytotreatpatientsfairly.Whencaringforpatientsforwhomlong‐termtubefeedingisbeingconsidered,cliniciansmayfindtheseethicalprinciplesatoddswitheachother.Forexample,respectforpatientautonomymayconflictwiththeclinician’sdesirestobebeneficentandtoavoidharm.Effectivecommunicationamongclinicians,patients,andsurrogatedecisionmakersmayhelppreventethicaldilemmas.Cliniciansshouldtaketimetolearnaboutthepatientandthepatient’svalues,goals,andbeliefs.Thepatientshouldbeprovidedampletimetodiscussandprovidehisorherconcernsrelatedtonutritionandhydration.Whenconveyingmedicalinformationconcerningbenefitsandrisksoflong‐termtubefeeding,cliniciansshouldavoidusingcomplexmedicallanguageandfrequentlyshouldassessthepatient’scomprehension.Conversely,ineffectivecommunicationamongclinicians,patients,andsurrogatedecisionmakersmayresultinethicaldilemmas.Lackoftraining,perceivedlackoftime,fearofthepatient’semotionalresponse,andgeneraldiscomfortwiththesetopicsmayresultincliniciansavoidingthesediscussions.Infact,discussionsaboutlife‐sustainingtreatmentsbetweencliniciansandpatientsarereportedlyuncommon.Despitegoodcommunication,cliniciansmayfaceethicaldilemmasrelatedtolong‐termtubefeedingthattheycannotresolve.Inthesesituations,anethicsconsultationmaybevaluable.TheEthicsConsultationServiceatourinstitutionusesthe4‐topiccase‐basedapproachdescribedbyJonsenetal.Thisapproach(below)reviewsmedicalindications,patientpreferences,qualityoflife,andcontextual(e.g.,financial,religious,cultural,andallocationofresources)issuesofagivencaseandfacilitatestheexposition,organization,andanalysisoftheethicallyrelevantfacts(i.e.,thefactsrelatedtotheprimafacieethicalprinciples).Answeringthequestionsisaconvenientapproachtothe4topics,and,reviewedtogether,theanswerstothequestionsnotonlydefinetheethicalproblembutoftensuggestasolution.

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CONCLUSIONSTheuseoflong‐termtubefeedinghasincreasedsubstantially.Reviewoftheliteraturehighlightstheneedforimprovededucationforphysicians,patients,andsurrogatedecisionmakersaboutuseoflong‐termtubefeedinganditsethicalimplications.Cliniciansshouldtakeanactiveroleinrecommendingadvanceddirectivestotheirpatients.Patientsshouldbeencouragedtoidentifyasurrogatedecisionmakerandtomakeintentionscleartothispersonaboutuseoflong‐termtubefeeding.Althoughoutcomedatafromprospective,randomized,controlledstudiesarelimited,informationfromobservationalstudiesisuseful.Ingeneral,PEGorpercutaneousendoscopicjejunostomy(PEJ)feedingtubeplacementshouldnotbeconsideredunlesstheanticipateddurationoftubefeedingisatleast1month.Thetechnicalprocedurestosecureenteraltubeaccessaregenerallysafe,buttheyarenotriskfree.Asimpleguidelinetooutlinetheappropriateuseoflong‐termtubefeedingdoesnotexistbecauseeachpersonhasauniqueperspectiveabouttheirqualityoflife.Aswithotherformsofmedicalinterventionsandtreatments,theapproachshouldbeindividualized.However,asdiscussedearlier,asystematicapproach(Figures1and2)canfacilitatethedecision‐makingprocess.Physicians[andtheinterdisciplinaryteam]shouldfirstdeterminewhetherthepatient’streatmentgoalsarepotentiallycurative,rehabilitative,orpalliative.Next,toallowinformeddecisionmaking,cliniciansshouldclearlycommunicatewithpatientsandsurrogatedecisionmakersaboutthepatient’sdiagnosis,prognosis,andpotentialoutcomesfromprovidingorwithholdinglong‐termtubefeeding.Forpatientsintheterminalstagesofdementia,cancer,orotherillnesses,currentstudiesdonotdocumentimprovedoutcomefromlong‐termtubefeedinguse.Itisunrealistictoexpectartificialnutritiontofavorablyimprovemedicaloutcomesintheseconditions;however,itisimportanttorecognizethat,incertainsituations,patientsandsurrogatedecisionmakerswillchooselong‐termtubefeedingtoachievepersonalgoals,independentofmedicaloutcome.Ifthepotentialmedicaloutcomeiscurativeorrehabilitative,thedecisionshouldrestonthepatient’swishes.Patientsandsurrogatedecisionmakersshouldbegivensufficienttimeandsupportformakinginformeddecisionsregardinglong‐termtubefeedinguse,andtheirdecisionsshouldbehonored.Researchisneededtoimprovetheclinician’sabilitytoestimatetheneededdurationofartificialnutritioninordertoselectshort‐termvs.long‐termenteralaccessforfeedingandtoassesstheeffectoflong‐termtubefeedingonqualityoflifeandmedicaloutcomefordifferingmedicalconditions.

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Four‐TopicApproachtoIdentifyEthicallyRelevantFacts[ThePEG/PEJplacementandlong‐termtubefeedingisunderlinedindicatingthatanycourseoftreatmentcouldbeinsertedintothisfour‐topicapproachtodecisionmaking.]MedicalindicationsTheprinciplesofbeneficenceandnonmaleficence1.Whatisthepatient’smedicalproblemthatispromptingconsiderationofPEG/PEJplacementandlong‐termtubefeeding?Prognosis?2.Istheproblemacute?Chronic?Critical?Emergent?Reversible?3.WhatarethegoalsofPEG/PEJplacementandlong‐termtubefeeding?4.Whataretheprobabilitiesofsuccess?5.Whataretheplansincaseoftherapeuticfailure?6.Insum,howcanthispatientbenefitfrommedicalandnursingcare,andhowcanharmbeavoided?PatientpreferencesTheprincipleofrespectforpatientautonomy1.Doesthepatienthavedecision‐makingcapacity?2.Ifthepatienthasdecision‐makingcapacity,whatarehisorherpreferencesfortreatment?3.HasthepatientbeeninformedofthebenefitsandrisksofPEG/PEJplacementandlong‐termtubefeeding,understoodthisinformation,andgivenconsent?4.Ifthepatientlacksdecision‐makingcapacity,whoistheappropriatesurrogate?5.HasthepatientexpressedpreferencesaboutPEG/PEJplacementandlong‐termtubefeedingpreviously(e.g.,advancedirective)?6.Isthepatientunwillingorunabletocooperatewithtreatment?Ifso,why?7.Insum,isthepatient’srighttochoosebeingrespectedtotheextentpossibleinethicsandlaw?QualityoflifeTheprinciplesofbeneficence,nonmaleficence,andrespectforpatientautonomy1.Whataretheprospects,withorwithoutPEG/PEJplacementandlong‐termtubefeeding,forareturntonormallife?2.Whatphysical,mental,andsocialdeficitsisthepatientlikelytoexperienceiftreatmentsucceeds?3.Aretherebiasesthatmightprejudicetheclinician’sevaluationofthepatient’squalityoflife?4.Isthepatient’spresentorfutureconditionsuchthathisorhercontinuedlifemightbejudgedundesirable?5.Isthereanyplanandrationaletoforgotreatment?6.Arethereplansforcomfortandpalliativecare?

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ContextualfeaturesTheprinciplesofloyaltyandfairness(justice)1.AretherefamilyissuesthatmayinfluencedecisionsrelatedtoPEG/PEJplacementandlong‐termtubefeeding?2.Arethereclinicianissuesthatmayinfluencetreatmentdecisions?3.Aretherefinancialandeconomicfactors?4.Aretherereligiousorculturalfactors?5.Aretherelimitsonconfidentiality?6.Arethereproblemsofallocationofresources?7.HowdoesthelawaffecttreatmentdecisionsforPEG/PEJplacementandlong‐termtubefeeding?8.Isclinicalresearchorteachinginvolved?9.Isthereanyconflictofinterestonthepartofcliniciansortheinstitution?AdaptedfromJonsenetal,111withpermissionfromMcGraw‐Hill.

JonsenAR,SieglerM,WinsladeWJ.ClinicalEthics:APracticalApproachtoEthicalDecisionsin

ClinicalMedicine.5thed.NewYork,NY:McGrawHill;2002.

(PermissiontousehasbeenrequestedfromMayoClinicProceedingsasof1/31/11.)

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References

AMDA–http://www.amda.com• AMDASynopsisofFederalRegulationsintheNursingHome:ImplicationforAttending

PhysiciansandMedicalDirectors2009.Availableforafee.• AMDAClinicalPracticeGuideline:AlteredNutritionalStatus.2009.Availableforafee.• AMDAClinicalPracticeGuideline:DiabetesManagementintheLong‐TermCareSetting

2008.Availableforafee.• AMDA:TheRoleoftheMedicalDirectorinPersonDirectedCare,2010

http://www.amda.com/governance/whitepapers/G10.cfm

ADA–http://www.eatright.org/HealthProfessionals

• ADAPositionPaperIndividualizedNutritionApproachesforOlderAdultsinHealthCareCommunities2010.

• ADAPositionPaperLiberalizationoftheDietPrescriptionImprovesQualityofLifeforOlderAdultsinLong‐TermCare2005.

• ADAEvidenceAnalysisLibrary.ADAUnintendedWeightLossNutritionPracticeGuideline2009.

• Roberts,L,CrystSuzanneC,Robinson,G,Elliott,C,MooreLC,RybickiM,Carlson,M.AmericanDieteticAssociation:StandardsofPracticeandStandardsofProfessionalPerformanceforRegisteredDietitians(Competent,ProficientandExpert)inExtendedCareSettings.JAmDietAssoc.2011;111:617‐624;624.e1‐e27.http://www.eatright.org/HealthProfessionals/content.aspx?id=6867

DMA–http://www.DMAonline.org

• DMAPositionPaperTheRoleoftheCertifiedDietaryManagerinPerson‐DirectedDining2011.Handy,Linda,DietaryManager’sAssociation:”TheRoleoftheCertifiedDietaryManagerinPerson‐DirectedDining,"DMAMagazine,April2011,page13.http://www.DMAonline.org/Members/Articles/2011_04_positionPaper.pdf

• Handy,Linda,DietaryManager’sAssociation:“YourRoleinEnsuringCultureChangeinDiningandRegulatoryCompliance,”DMAMagazine,June2010,page14.

• http://www.anfponline.org/Publications/articles/2010_06_cultureChange.pdf

CMS–http://www.cms.gov• PsychosocialSeverityOutcomeGuide,StateOperationsManual,AppendixP,2006.• StateOperationsManualforLTCFacilitiesAppendixPP1/2011update

PioneerNetwork–http://www.pioneernetwork.net

• NurseCompetenciesforNursingHomeCultureChange,May27,2010.PioneerNetwork/HartfordInstituteforGeriatricNursing.

• Thefollowingpapersandaccompanyingwebinarscanbeaccessedat

http://www.pioneernetwork.net>>Conferences>>CreatingHomeII:FoodandDining.

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ThisNationalSymposiumonCultureChangeandtheFoodandDiningRequirementsweresponsoredbyCMSandPioneerNetwork,February2010:

Bump,Linda.TheDeepSeatedIssueofChoice.Leible,KarynandWayne,Matthew.TheRoleofthePhysician’sOrder.Handy,Linda.SurveyInterpretationofRegulations.Hyde,Denise.TheRoleofthePharmacist.Remsburg,Robin.Home‐styleDiningInterventionsinNursingHomes:ImplicationsforPractice.

Ronch,Judah.FoodforThought:TheMissingLinkbetweenDiningandPositiveOutcomes.Simmons,SandraF.,Bertrand,RosannaM.EnhancingtheQualityofNursingHomeDiningAssistance:NewRegulationsandPracticeImplications.Bowman,Carmen.TheFoodandDiningSideoftheCultureChangeMovement:IdentifyingBarriersandPotentialSolutionstofurtheringInnovationinNursingHomesBackgroundPaperfortheFeb.2010CHII.ReportofCMSContractHHSM‐500‐2009‐00057P.

• Thefollowingpaperssomeofwhichaddressthediningenvironment,werewrittenfortheCreatingHome(I)CreatingHomeintheNursingHome:ANationalSymposiumonCultureChangeandtheEnvironmentRequirementssponsoredbyCMSandthePioneerNetwork,April2008:

Calkins,Margaret.Privatevs.SharedBedroomsinNursingHomes.Nelson,Gaius.HouseholdModelsforNursingHomeEnvironmentBrawley,Elizabeth.Lighting:PartnerinQualityCareEnvironments.Cutler,Lois.NothingisTraditionalaboutEnvironmentsinTraditionalNursingHomes.Calkins,Margaret.CreatingHomeintheNursingHome:FantasyorReality?

Bowman,Carmen.TheEnvironmentalSideoftheCultureChangeMovement:IdentifyingBarriersandPotentialSolutionstofurtheringInnovationinNursingHomes.BackgroundPapertotheApril3rd,2008CreatingHomeintheNursingHome:A

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NationalSymposiumonCultureChangeandtheEnvironmentRequirements.ReportofCMSContractHHSM‐500‐2005‐00076P.

FreeWaterProtocolsPanther,K.(2005).TheFrazierFreeWaterProtocol.PerspectivesonSwallowingandSwallowingDisorders(Dysphagia),14(1),4‐9.PlanetreeLongTermCareImprovementGuidehttp://www.anfponline.org/Publications/articles/2010_06_cultureChange.pdf