Feeding.tubes.advanced.dementia

7/29/2019 Feeding.tubes.advanced.dementia

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AMERICAN GERIATRICS SOCIETY (AGS)FeedingTubesinAdvancedDementiaPositionStatement

BACKGROUNDFoodandtheenjoymentofeatingplayimportantsocial,religious,biologicalandsymbolicroles

inmostcultures.Giventhesediverserolesitisnotsurprisingthatgreatconcernoftenarises

whenapersonbeginstohavedifficultywitheatingorlosesthedesiretoeat.Thosewith

advanceddementiagenerallyexperienceeatingdifficulties,inconjunctionwithprofoundloss

ofmemory,verbal,andfunctionalabilitiesduetotheunderlyingprogressive

neurodegenerativeprocess.Patientswithadvanceddementiaaredependentonothersforall

aspectsoftheircare,andmustrelyonotherstomakedecisionsaboutthetypesofcarethey

receive.Oncepersistenteatingdifficultiesarise,familycaregiversareoftenconfrontedwith

difficultdecisionsthattypicallyincludewhethertocontinuehandfeedingorinitiatetube

feeding(through

placement

of

apercutaneous

endoscopic

gastrostomy

tube

or

PEG).

This

decisionremainsburdensometofamilydecisionmakersgivenbeliefs,culture,andlackof

knowledgeabouttheimpactoftubefeedingortheneedsandcomfortofanindividualwith

advanceddementia.

Olderadultswithadvanceddementiaarebedbound,unabletoambulate,andhavelimited,if

any,abilitytocommunicateverbally. Pneumonia,febrileepisodes,andeatingproblemsare

frequentcomplicationsinpatientswithadvanceddementia,andthesecomplicationshave

beenlinkedwithincreasedmortality.1 Whenconsideringtheuseoftubefeedinginolder

adultswithadvanceddementia,thepreponderanceofevidencedoesnotsupportitsuse.2

Ethical

study

design

and

methodology

issues

are

significant

barriers

to

research

with

this

vulnerablepopulation,andwhilearandomizedcontrolledtrialhasnotbeenconducted

comparingthebenefitsandburdensoftubefeedingversushandfeedinginpersonswith

advanceddementia,currentrecommendationsarebaseduponexpertopinionandextensive

observationaldata. Publishedempiricalworkusingobservationaldataremainshighly

consistentinfindingalackofefficacyintubefeedinginthispopulation.2

ConsiderablevariabilityintubefeedinguseforresidentsinlongtermcareexistsintheUnited

States,whichmayreflectpracticesspecifictonursinghomesand/orhospitalsratherthan

patientvaluesorefficacy.35

Asmanyas34%ofUSnursinghomeresidents withadvanced

dementiahavefeedingtubes,twothirdsofwhichareinsertedduringanacutehospitalstay.35

Caregiversreport

little

conversation

surrounding

tube

feeding

decisions,

and

at

times

families

feelpressureforitsuse.6Nursinghomeswithlowratesoftubefeedingusehaveenvironments

thatpromotetheenjoymentoffoodandadministrativesupportandempowermentofstaffto

promotehandfeeding,alongwithpracticesthatfostershareddecisionmakingamong

surrogatecaregivers7.

May2013


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Thisguidelinewasfirstpublishedin1993andreviewedin2005. Wearenowrevisingthis

statementduetothepublicationofseveralsentinelstudiesfurtherdetailingburdens

associatedwithtubefeedinguseinpersonswithadvanceddementia.

POSITIONS1.Percutaneousfeedingtubesarenotrecommendedforolderadultswithadvanceddementia.Carefulhandfeedingshouldbeoffered;forpersonswithadvanceddementia,handfeedingis

atleastasgoodastubefeedingfortheoutcomesofdeath,aspirationpneumonia,functional

statusandpatientcomfort. Tubefeedingisassociatedwithagitation,increaseduseofphysical

andchemicalrestraints,andworseningpressureulcers.

Rationale:Thecurrentscientificevidencesuggeststhatthepotentialbenefitsoftubefeeding

donotoutweighsubstantialassociatedtreatmentburdensinpersonswithadvanceddementia.

Studiesconsistentlydemonstrateaveryhighmortalityinolderadultswithadvanceddementia

whohavefeedingtubes.2,5,810

Inobservationalstudies,tubefeedinghasnotbeenshownto

preventaspiration,healpressurewounds,improvenutritionalstatus,ordecreasemortalityin

personswithadvanceddementia.2,5,814

Additionally,tubefeedingisassociatedwith

substantialpatientburdensincludingrecurrentandnewonsetaspiration,tubeassociatedand

aspirationrelatedinfection,increasedoralsecretionsthataredifficulttomanage,discomfort,

tubemalfunction,pressurewounds,andtheuseofphysicalandchemicalrestraints.1316

Moreover,studieshaveshownthatnursinghomeresidentswithadvanceddementiaanda

feedingtubefrequentlyneedtobetransferredtotheemergencyroomtoaddresstuberelated

complications.5,17

Finally,increasedlevelsofdiscomforthavenotbeenobservedinolder

adultswithadvanceddementiawhere,despiteeatingdifficulties,afeedingtubewasnot

placed.18

Aswithothermedicaltherapies,thebenefitsandburdensoftubefeedingshouldbediscussed

withpatientsfamiliesorsurrogatedecisionmakersbeforetheprocedureisconsidered. There

maybecircumstanceswhenshorttermtubefeedingwouldbeappropriate19

andconsistent

withpatientspreviouslyexpressedwishesandvalues.Inthesecases,cleargoalsoftherapy

shouldbedecideduponbeforetubefeedingisinitiatedandshouldbereviewedfrequently.The

benefitsversustheburdensoftubefeedingdonotsupportitsuseinolderadultswith

advanceddementia.

Therefore,itisessentialthatalloptions,includingcontinuedassistedoralfeeding,bepresented

to

surrogate

decision

makers

for

patients

with

advanced

dementia

and

persistent

eating

problems. Inaddition,fortrueinformedconsenttobeobtained,thesubstantialtreatment

burdensassociatedwithtubefeedingneedtobeunderstoodbydecisionmakers.

2.Effortstoenhanceoralfeedingbyalteringtheenvironmentandcreatingpatientcenteredapproachestofeedingshouldbepartofusualcareforolderadultswithadvanceddementia.


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Rationale:Oralfeedingmaybeoneoffewremainingpleasuresandatimeforsocializationfora

personwithadvanceddementia.Mealtimemustberegardedasaneventofimportance,

insteadofataskthatneedstobecompletedassoonaspossible.Environmentswithlessnoise

andclutteraremoreconducivetoeatingthanchaoticones.Innursinghomes,nursetraining

andstaffeducationimprovesfeedingstrategiesinresidentswithdementia.7,2021

Dietsshould

beliberalized

based

on

resident

preference

and

adequate

fluids

should

be

given

with

feedings

toenhancethetasteoffoods. Continuedcarefulhandfeedingshouldbeconsideredasan

acceptedalternativetotubefeeding.22

Inaddition,feedingtubesshouldneverbeviewedasa

cheaper,moreefficientwayoffeedingpatients.Whenpatientswithadvanceddementia

developalossofappetite,weightloss,difficultyswallowingoraspiration,adiscussionof

feedingissuesshouldoccurwithoutdelay.Thisshouldinvolveamultidisciplinaryassessmentof

reversiblecausesofnoteatinganddiscussionswithfamilyabouttheplanofcareinrelationto

thestageofdementia.

3.Tubefeedingisamedicaltherapythatcanbedeclinedoracceptedbyapatientssurrogate

decisionmakerinaccordancewithadvancedirectives,previouslystatedwishes,orwhatitis

thoughtthepatientwouldwant.

Rationale:Since1990,whentheSupremeCourtruledontheNancyCruzancase,artificialfeedingwasdeemedtobemedicaltherapyandlikeanyothermedicaltherapy,couldbe

startedandstoppedbasedonapersonswishesandvalues.23

Whenpatientslosetheircapacity

toconsenttotreatments,theirpreviouslyexpresseddirectives,wishesorvaluesshouldbeused

toguidesurrogatedecisionmakers.Thecourtruledthatindividualstatescoulddefinethelevel

ofevidencerequiredtosubstantiatethatapatientwouldnotwanthavewantedartificial

feeding.Thus,Missouriwaspermittedtosetthisstandardofevidenceatthelevelofclearand

convincing.Manystateshaveadoptedastandardofreasonableevidencewhilesomelike

Missouriand

New

York

use

the

clear

and

convincing

standard.

With

few

exceptions,

the

courtshaveupheldtherightsofpatientsortheirhealthcareagentstorefusetubefeeding.

4.Itistheresponsibilityof allmembersofthehealthcareteamcaringforresidentsinlong

termcaresettingstounderstandanypreviouslyexpressedwishesofthepatient(through

reviewofadvancedirectivesandwithsurrogatecaregivers)regardingtubefeedingand

incorporatethesewishesintothecareplan.

Rationale:Inmostcasesofadvanceddementia,thereisopportunity,oftenoveraperiodofmonths,toobservethatapatienthasexhibitedaprogressivedecreaseinoralintakeand/or

swallowing

function.

Though

a

thorough

evaluation

of

reversible

causes

of

these

problems

shouldbeconducted,persistenteatingdifficultiesareoftentheconsequenceofprogressionof

theneurodegenerativeprocess. Healthcareprovidersshouldbeencouragedtodiscussthe

futurepotentialfeedingissuesandfunctionallossesthataccompanydementiawithcaregivers

asawayofprovidingeducationaboutthediseaseprocess. Discussionofadvancedirectives

regardingfeedingsupportshouldbeginearlyinthecourseofillness,andshouldnotbedelayed

untilacrisisdevelops. Earlydiscussionandplanningisimportantgiventhatpercutaneous

feedingtubesareusuallyplacedduringaninpatienthospitalization,5ofteninthesettingof


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acuteillnessandprognosticuncertainty. Thisdoesnotallowfamilymemberstimetoprepare

tomakeapotentiallydifficultdecision. Asnotedinpositionstatementnumberthree,

surrogatedecisionmakersshouldusepreviouslyexpressedvaluestatements,wishes,and

directives,toguidetheirsubstitutedjudgmenttodecidewhatthepatientwouldwantunder

thepresentcircumstances.

Practitionersshouldrecognizetheconceptof(personal)autonomy. Althoughitisconsidered

thebedrockofWesternethicalprinciples,itmaynotbeasimportanttopeoplefromother

culturesorspecificreligioustraditions. Itisimportantthatpractitionersarticulatetheconcept

ofautonomywhatthepersonwouldwantwhileacknowledgingculturalexpectations,

religiousbeliefs,andfamilytraditions. IntheUnitedStates,informedconsentrequiresareview

ofthebenefitsandburdensoftubefeeding.

5.Institutionssuchashospitals,nursinghomesandothercaresettingsshouldpromotechoice,

endorsesharedandinformeddecisionmaking,andhonorpatientpreferencesregardingtube

feeding. Theyshouldnotimposeobligationsorexertpressureonpatientsorprovidersto

institutetubefeeding.

Rationale:Patientvalues,goals,prognosisandefficacyoftreatmentshouldbethedeterminantofanymedicaltherapyincludingtubefeeding.Institutionssuchasnursinghomesshould

developpoliciestoensurethatresidentswithremediablecausesofweightlossareevaluated

andtreatedappropriatelyandthattubefeedingisnotregardedastheonlytreatmentchoice.

Decisionaidsaboutfeedingoptionsinadvanceddementiahavebeenshowntoimprovethe

qualityofdecisionmakingforsurrogatesandtheirfrequencyofcommunicationwithmedical

providers.24

Institutionsshouldemploythesetoolsincombinationwithhighquality

communicationtoensurethatfamiliesaremakinginformedtreatmentchoices. Clinical

conditionssuch

as

constipation,

depression,

medication

side

effects

and

xerostomia

are

among

severalconditionsthatshouldbeconsideredinpatientswhoarenoteatingandlosingweight.

Studieshavenotonlyrevealedgeographicvariationintheuseoftubefeedingamongnursing

homeresidentswithadvanceddementia,theyhaveidentifiedinstitutionalcharacteristicsthat

areassociatedwithincreaseduseoftubefeedinginnursinghomesincludinglargernursing

homes,lackofdementiacareunits,noonsitemidlevelprovidersandforprofitstatus.3

Additionally,weightloss,acommonoccurrenceinpatientswithadvanceddementia,isa

qualitymeasureforUSnursinghomesthatiscloselymonitored,usedforevaluationpurposes,

andmayserveasanimpetusforfeedingtubeplacement.Patientcharacteristicsandchoice

shouldshapeourinstitutionsanddriveclinicalcare.Institutionsshouldnotattemptto

influence

physicians

or

patients

into

providing

or

accepting

care

that

is

not

effective

or

congruentwithpatientvaluesandgoals.Ifinstitutions,basedonreligiousormoralgrounds,

havepoliciesobligatingtheuseoftubefeeding,familiesandpatientsshouldbeinformedof

theminadvance.Whenapatientlosestheabilitytoeatinsuchaninstitution,anddoesnot

desiretubefeeding,theinstitutionshouldtransferthatpatienttoanestablishmentthatwill

honorthepatientswishes.

ACKNOWLEDGEMENTS


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FinancialDisclosure(s):TheauthorsKathrynDaniel,RamonaRhodes,CarolineVitale,andJosephShegahavenofinancialsupportforresearchrelatedtothistopic,consultantships,and

speakersforum,aswellasanycompanyholdings.

AuthorContributions

and

Review:KathrynDaniel,RamonaRhodes,CarolineVitale,andJoseph

Shegareviewedextantexpert/professionalrecommendationspositionstatements,including

recentpublications.KathrynDanieldraftedthereviewandmaderevisionsasrequestedbythe

AGSClinicalPracticeandModelsofCareCommitteeandinputfromtheAGSEthicsCommittee

wasprovidedbyRamonaRhodes,CarolineVitale,andJosephShega.

ThisstatementwasreviewedandapprovedbytheAGSExecutiveCommitteeinMay2013.

Sponsor'sRole:Thereisnosponsorforthisdocument.


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Feeding.tubes.advanced.dementia

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