Developed by Carol Taylor, PhD, RN, Professor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar

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CaseAnalysis

THEETHICSWORKUP

GeorgetownUniversityCenterforClinicalBioethicsTheabilitytoworkuptheethicalaspectsofacaseisanessentialpartofclinicalreasoning.Theemphasisintheethicsworkupisonasensibleprogressionfromthefactsofthecasetoamorallysounddecision.Usingthefiveprincipalstepsoftheethicsworkup,guardiansandhealthprofessionalsholdingavarietyofphilosophicalandreligiouspositionsregardingethicscanshareabasicframeworkforthinkingaboutanddiscussingmorallytroublingcases:1.WHATARETHEFACTS?Itisvitallyimportanttoclarifythefactsofthecasein

ordertoanchorthedecision.Thesefactsarebothmedicalandsocial.Forexample,

bothanestimateofprognosisandanunderstandingofthepatient'shomesituationareoftenrelevanttoanethicaldecision.

• Personsinvolved(who?)• Diagnosis,prognosis,therapeuticoptions(what?)• Patientpreferences,beliefs,values(what?)• Chronologyofevents,timeconstraintsondecision(when?)• Medicalsetting(where?)• Reasonssupportingclaims,goalsofcurrentcare(why?)

Nursesandsocialworkersmaybeinstrumentalinensuringthatthepatient/familyandothernonmedicalhealthprofessionalsunderstandthemedicalfactsandthatthehealthcareteamunderstandspertinentnonmedicalinformationaboutthepatientandfamily.2.WHATISTHEISSUE?Isthereaconflictatthepersonal,interpersonal,institutionalorsocietallevel?Isthereaquestionthatariseseitheratthelevelofthoughtorfeeling?Doesthequestionhaveamoralorethicalcomponent?Why?(e.g.,doesitraiseissuesofrights,moralcharacter,etc.).Theissuemaynotbeethical,butratheradiagnosticproblemorasimplemiscommunication.3.FRAMETHEISSUE:Someguardiansandhealthprofessionalswillexploretheissueusingonlyonemoralapproach.Otherswilleclecticallyemployavarietyofapproaches.Butnomatterwhatone'sunderlyingmoralorientation,theethicalissueatstakeinagivencasecanbeframedintermsofseveralbroadareasofconcern,representingaspectsofthecasewhichmaybeinethicalconflict.Itisthereforeuseful,ifsomewhatartificial,todissectthecaseapartalongthelinesofthe

Developed by Carol Taylor, PhD, RN, Professor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar

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followingareasofconcern:

a.IdentifytheappropriateDecisionmaker(s).Therearethreerulesofthumbforhealthcaredecision-making.

• Patients with intact decision-making capacity make their owndecisions.Decisionmakingcapacityentailstheabilityto1)understandthe information necessary to make this particular decision (taskspecific),2)reasoninaccordwithrelativelyconsistentvalues,and3)communicateapreference.

• Surrogatesmakehealthcaredecisionsforincapacitatedpatientswitha prior history of capacity by using the substituted judgmentstandard.Totheextentthatthepatient’svaluesandpreferencesareknowntheyshoulddirectdecision-making.Thesurrogateasks,“whatwould the patient choose if able to make and communicate apreference?”not“WhatwouldIchooseifthechoiceweremine?

• Surrogatesofpatientswhoneverpossesseddecision-makingcapacity:infants,smallchildrenandprofoundlyretardedadults,makedecisionsusingthebestinterestsstandard.Thesurrogateasks,“Whichoptionismost likelytobenefitandtonotharmthepatient?”andconsidersrelief of suffering, preservation and restoration of function, and thequalityandextentofthelifesustained

b.Applythecriteriatobeusedinreachingclinicaldecisions.

1)Thespecificbiomedicalgoodofthepatient:Oneshouldask,whatwilladvancethebiomedicalgoodofthepatient?Whatarethemedicaloptionsandlikelyoutcomes?Determinetheeffectivenessofproposedinterventions[Atreatmentiseffectivetothedegreethatitreversesoramelioratesthenaturalprogressionofthedisease].Thisisanobjectivemedicaldeterminationtothedegreethatthisispossible]

2)Thebroadergoodsandinterestsofthepatient:Oneshouldask,whatbroaderaspectsofthepatient'sgood,i.e.,thepatient'sdignity,religiousfaith,othervaluedbeliefs,relationships,andtheparticulargoodofthepatient'schoice,arepertinenttothedecisionathand?Useabenefit-burdenanalysistodetermineifthebenefitsoftheproposedinterventionoutweightheburdens.Thisisasubjectivedetermination,whichcanonlybemadebythepatientorbythosewhoknowthepatientwell.3)Thegoodsandinterestsofotherparties:Healthprofessionalsmustalsobeattentivetothegoodsandinterestsofothers,e.g.,inthe

Developed by Carol Taylor, PhD, RN, Professor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar

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distributionofresources.Oneshouldask,whataretheconcernsofotherparties(family,healthcareprofessionals,healthcareinstitution,law,society,etc.)andwhatdifferencesdotheymake,morally,inthedecisionsthatneedtobemadeaboutthiscase?Indecidingaboutanindividualcase,however,theseconcernsshouldgenerallynotbegivenasmuchimportanceasthataffordedthegoodoftheindividualpatientwhomhealthprofessionalshavepledgedtoserve.Thephysicianexplainsthemedicaloptionstothepatient/surrogatesandifindicatedmakesarecommendation.Thepatient/surrogatemakesanuncoerced,informeddecision.Limitstopatient/surrogateautonomyincludetheboundsofrationalmedicine/nursing/socialwork,theprobabilityofdirectharmtoidentifiablethirdparties,andviolationoftheconsciencesofinvolvedhealthcareprofessionals.Inproblematiccasestheinterdisciplinaryteammaymeettoensureconsistencyintheirrecommendationstothepatient/surrogate(s).

c.Establishthehealthcareprofessionals’andguardian’smoral/professionalobligations.Theprimaryobjectofallclinicaldecisionmakingoughttobetosecurethehealth,well-beingorgooddyingofthepatientandtodothiswhilesimultaneouslyrespectingtheintegrityofthepatientandallthoseinvolvedindecisionmakingandimplementingtheplanofcare.

4.IDENTIFYANDWEIGHALTERNATIVECOURSESOFACTIONANDTHENDECIDE:Inclinicalethics,asinallotheraspectsofclinicalcare,adecisionmustbemade.Thereisnosimpleformula.Theanswerwillrequireclinicaljudgment,practicalwisdom,andmoralargument.Guardiansshouldworkcloselywithhealthcareprofessionalstoauthorizeadecisionthatsecuresthebestinterestsofthepatient:health,wellbeing,gooddying.Itisappropriatetoaskcliniciansforarecommendationbasedontheirclinicalexpertiseandexperience.Thisshouldthenbeweighedwiththeguardian’sknowledgeofthepatientandestimateofbestinterests.Sinceweliveinamorallypluralisticworld,goodpeoplecanreasondifferentlyaboutwhatoughttobedone.

Ethicallyrelevantconsiderations: 1)Balancingbenefitsandharmsinthecareofpatients

2)Disclosure,informedconsent,andshareddecisionmaking3)Thenormsoffamilylife4)Therelationshipsbetweencliniciansandpatients5)Theprofessionalintegrityofclinicians6)Cost-effectivenessandallocation7)Issuesofculturalandreligiousvariation

Developed by Carol Taylor, PhD, RN, Professor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar

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8)Considerationsofpower(Fletcher,Brody,Miller&Spencer)

Groundingandsourceofethics:philosophical(basedinreason),theological(basedinfaith),socio-cultural(basedincustom)

5.CRITIQUE:Itisimportanttobeabletocritiquethedecisionthathasbeenmadebyconsideringitsmajorobjectionsandtheneitherrespondingadequatelytothemorchangingone'sdecision.Somecasescanevenbetakentoanethicscommitteeforfurtherreflection.

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Scenario #1 1.WhataretheFacts?MaryJohnsisa50-year-oldwomanwhohasaprofoundlevelofintellectualdisabilityandadaptiveskills.Shehastheco-occurringdisabilityofcerebralpalsyandrequiresacustom-moldedwheelchairformobility,and24-hoursupportsforeating,dressing,hygieneandtoparticipateinherfavoritecommunityactivities.Marywasinstitutionalizedatanearlyage,andshehasnofamilyconnections.Youarehercourtappointedguardian,andyouhaveworkedwithherforthepastfouryears.Youregularlyparticipateinallinterdisciplinaryteammeetings,anddespitetheever-changingstaffinherresidence,youcontinuetobediligentincommunicatingwiththestaffsoastokeepinformedofMary’sneeds.YoualsousestafftoassistincommunicatingwithMary,sinceMarydoesnotseemtorecognizeyouwhenyoumeet.Youreceiveacallfromthehospital.ItisthemedicalresidentinformingyouthatMaryhashadasignificantcerebralvascularaccident/stroke(bleedinginthebrain).Whileitisabitprematuretosaywithcertainty,theextentofthebleedthatisshownontheMRIwouldindicatethatshewouldnotlikelyrecoverherpriorabilities(theresidentdoesnotseemtobefamiliarwithherpreviousleveloffunctioning,however).BecausetherewasnoindicationofanyadvancedirectiveswhenMarypresentedattheemergencydepartment,shewasplacedonaventilatortomaintainherbreathing.Themedicalresidentisaskingyouifyouwishtoexecutea“donotresuscitate”order.

Itisnowaweeklater.Marycontinuestorequireventilatorsupport,butshehasnotexperiencedanyothercrises.TodayyouareaskedtoconsentforagastricfeedingtubetoallowMarytoreceiveadequatenutrition.YouhavevisitedMary3timesinthehospital,butshedoesn’tevenopenhereyeswhenyoucallhernameandrubherarm.ThestafffromthegrouphometellsyouthattheybelieveMarywillrecover;shejustneedstime.ThemedicalteamatthehospitalreportsthatthedamagefromtheCVAissignificant,andsheisnotlikelytoreturntoherformerself.2.Whatistheethicalissue?Shouldyouconsenttoa“donotresuscitate”orderintheeventherheartstopsorshestopsbreathing? Shouldyouconsenttoagastrictubetoprovideherwithnutrition?

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3.FrametheIssue

a.Identifytheappropriatedecision-makerThefactsaspresenteddonotcommunicatesufficientinformationforadecisiontobemadeaboutMaryJohns’abilitytomeetthethreecriteriatodemonstratedecision-makingcapacity:theabilityto1)understandherconditionandtreatmentoptions,2)deliberateinaccordancewithherownvaluesandgoalsandtomakeanuncoerceddecisionamongtreatmentoptions;and3)communicate(verballyornonverbally)thisdecision(HastingsCenterGuidelinesforDecisionsonLifeSustainingTreatmentandCareNeartheEndofLife).Her“profoundlevelofintellectualdisability”attheveryleastsuggeststhatherabilitytodotheaboveisseriouslycompromised.TotheextentthatMary’scaregiverscanspeaktowhattheybelieveherpreferencesare,theseshouldbefactoredcarefullyintothedecisionsathand.Theguardian,however,istheprimarydecision-makerandneedstocreateapartnershipandworkcloselywiththeprofessionalteamtomakeandauthorizetreatmentdecisions.b.Applythecriteriatobeusedinreachingclinicaldecisions

1)Thespecificbiomedicalgoodofthepatient2)Thebroadergoodsandinterestsofthepatient3)Thegoodsandinterestsofotherparties

ShouldyouauthorizeattemptstoresuscitateMaryifherheartstopsorshestopsbreathing?TheHastingsCenterGuidelinesforDecisionsonLife-SustainingTreatmentandCareNeartheEndofLife1read:

Insomecircumstances,cardiopulmonaryresuscitation(CPR)atermcoveringarangeofinterventionsaimedatrestoringheartbeatandbreathingaftercardiacarrest,isaneffectivetreatmentthatcansavelives.…However,whenapatientwhoseoverallconditionisdeterioratingsufferscardiacarrest,thelikelihoodthatCPRwillmeetitsimmediategoalofrestoringheartbeatandbreathingislower,andthepatient’sprognosisislikelytobepoornomatterwhatinterventionsaresubsequentlyattempted.ThereisahugeliteratureontheoutcomesofCPRinitiatedinvarioussettingsanddifferentpatientpopulations.PortrayalsofCPRinpopularmediacanpromptmembersofthepublic—includingpatients,surrogates,andlovedones—toformamisleadingimpressionofthenatureofthistreatmentandthe

1Berlinger,N.,Jennings,B.andWolf,S.M.(2013).TheHastingsCenterGuidelinesforDecisionsonLife-SustainingTreatmentandCareNeartheEndofLife.NewYork:OxfordUniversityPress,pp.165-166.

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circumstancesunderwhichitislikelyorunlikelytoachieveitslife-savinggoal.In-hospitalCPRinvolvingadvancedcardiaclifesupport(ACLS)canbeahighlyinvasiveprocedurethatapatientmayexperienceasburdensome.

MaryfallsintothecategoryofpatientswhoseconditionisdeterioratingandtheguardianislikelytogetrecommendationfromclinicianstoauthorizeaDoNotAttempttoResuscitate(DNAR)orDoNotResuscitate(DNR)order.Itwouldbeethicaltoauthorizesuchanorderunlesstheguardianhasreservationsabouttheaccuracyofthereportofdamageresultingfromthecerebralbleed.InthissituationaskingformoretimetoevaluatethepossibilityofMary’sreturntoherformerleveloffunctioningisappropriate.ManyhospitalsarenowreplacingDNAR/DNRterminologywithAllowNaturalDeath(AND)Orders,whichsimplymeanthatintheeventthatone’sheartstopsoronestopsbreathing,naturaldeathisallowedandnointerventionstorestartheartbeatorbreathingareattempted.AnANDOrderwouldsimilarlybeethicallyappropriate.ThedecisionaboutwhetherornottoinsertagastricfeedingtubewillturnonthedegreeofdamageresultingfromthestrokeandMary’sabilitytoreturntoherformerself.IsthestafffromthegrouphomebeingunrealisticwhentheypersistinbelievingthatMarywillgetbetter?Aretheysimplyhavingdifficultyacceptingthemedicalteam’sevaluationandprognosis?Alternatively,hasthemedicalteamallowedsufficienttimetoaccuratelydescribethedegreeofdamagesecondarytothestrokeandtheprobabilitythatMarywillreturntoherformerself?TheguardianshouldpressMary’sphysicianforananswertothelatterquestionandifnotsatisfiedwithwhatislearned,seekasecondopinion.ItwouldbeimportanttolearnifitisprobablethatMarywillreturntoherformerabilities,orifMarycanatleastgainsomecapabilitiesthatwillallowhertoenjoysomeofthesamethingsthatpreviouslygaveheragoodqualityoflife.IftheguardianisconfidentthatMary’sdamageissevereandthatshewillneverreturntoherformerselfitwouldbeappropriatetonotinsertthegastrictubeandtotransitiontopurelypalliativegoals.Atthispoint,theethicalquestionbecomes:Shouldthetreatmentchangefromstabilizingfunctioningtopreparingforacomfortableanddignifieddeath?Ifthelater,adecisionmightbemadetoremoveMary’sventilatorysupport.Unlesstherearereligious,culturalorotherreasonstobelievethatMarywouldvaluelifelivedunderanycircumstancesitwouldbeappropriatetotransitiontopurelypalliativegoalsatthispoint.SignificantfortheguardianisthefactthatduringthethreevisitswithMary,shedoesn’tevenopenher

Developed by Carol Taylor, PhD, RN, Professor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar

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eyeswhenyoucallhernameandrubherarm.Thisisasignificantdeparturefrombaseline.TherearenoimmediatethirdpartiestobeconsideredwhenthisdecisionismadeexcepttobesensitivetotheinterestsoftheMary’scaregivers.c.Establishthehealthcareprofessionals’andguardian’smoral/professionalobligations.Theprimaryobjectofallclinicaldecisionmakingoughttobetosecurethehealth,well-beingorgooddyingofthepatientandtodothiswhilesimultaneouslyrespectingtheintegrityofthepatientandallthoseinvolvedindecisionmakingandimplementingtheplanofcare.Ifadecisionismadetotransitiontopurelypalliativegoalsandtoforegothefeedingtubeandortoremoveventilatorysupport,everyeffortshouldbemadetopreparethepatientforacomfortable,dignifieddeath.Allattentionshouldbedirectedtothepatient’s(andcaregivers’)comfortandpeace.Areferralshouldthenbemadetohospice.

4.IdentifyandWeighAlternativeCoursesofActionandThenDecide

Ethicallyrelevantconsiderations1)Balancingbenefitsandharmsinthecareofpatients2)Disclosure,informedconsent,andshareddecisionmaking3)Thenormsoffamilylife4)Therelationshipsbetweencliniciansandpatients5)Theprofessionalintegrityofclinicians6)Cost-effectivenessandallocation7)Issuesofculturalandreligiousvariation8)Considerationsofpower2

Basicallytherearetwooptionstoconsider:1)maintainthegoalofstabilizingMary’sfunctioningwhichentailstreatingcomplicationsastheyarise,maintainingventilatorysupport,insertingafeedingtube,resuscitationinterventionsifherheartorbreathingstops,or2)transitiontopurelypalliativegoalswiththeexplicitgoalbeingtoprepareMary,andhercaregiversforapeacefulanddignifieddeath.InMary’scasemuchwilldependontheextentofdamagerelatedtobleedingintoherbrainandhowthiswillaffecthereverydayfunctioningandabilitytoexperienceameaningfullife.Towhatdegreewillshebeabletoreturntoherpre-2Fletcher,J.C.&Spencer,E.M.(2005).Clinicalethics:History,content,andresources.InJ.C.Fletcher,E.M.Spencer,&P.A.Lombardo,Eds.,Fletcher’sintroductiontoclinicalethics,3rded.Hagerstown,MD:UniversityPublishingGroup,p.12.

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hospitalizationbaseline?Andtotheextentthatthisisimpossible,wouldherresultingconditionbeacceptabletoher—needtocontinueventilatorysupport,befedwithagastrictube,etc.?Aretheburdensassociatedwiththeseinterventionsproportionatetothebenefitsshederives?Unlesshercaregiverscanmakeacasethatitisreasonabletoexpectareturntopreviousfunctioning,thentransitioningtopurelypalliativegoalsisethicallyappropriate.GiventheobviousattachmentMary’scaregivershavetoher,carefulattentionshouldbepaidtosupportingthemandhelpingthemtounderstandthedecisionbeingmade.Iftheguardian,Ms.Johnson’scaregivers,andhealthcareprofessionalscannotagreeonacourseofaction,referraltoanethicscommitteeorconsultantshouldbemade.5.CritiqueWhateveralternativeisselected,onceitisimplementedtheguardianshouldcarefullyfollowtheoutcomestoseewhatcanbelearnedthatwouldbehelpfulinasimilarsituationinthefuture.

Developed by Carol Taylor, PhD, RN, Professor, Georgetown University School of Nursing and Health Studies, Kennedy Institute of Ethics Scholar

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Scenario #2 1.WhataretheFacts?RobertPerkinsisa45-year-oldmanwithDownsyndrome.Youhavebeenhisguardiansincehewas18yearsoldandexitedthechildwelfaresystem.Despitehisprofoundlevelofintellectualdisability,youhavecometoappreciatehissenseofhumorovertheyears,andyouknowabouthisfavoritefood(pizza),pasttimes(walkingtotheicecreamstoreupthestreetfromhishome)andfavoriteclothestowear(anythingmadeofsweatshirtfabric).Aftertwoyearshavepassed,staffreportsnewbehavioralproblemsthatincludeagitationafterreturningfromhisafternoonjob,refusalstotakeashower,andwantingtoeatdinnerrightafterhealreadyhaddinner.Robertiseventuallydiagnosedwithdementia.Althoughplacedonadrugthatwassupposedtoslowtherateofdementia-relatedproblems,Roberthasdevelopedaseizuredisorder,hashadtoquithisjob,andrecentlyhasbeenhavingchokingepisodeswheneating.Robert’sswallowingstudyshowsthatthereisnophysicalobstructioninhisesophagus,butthespeechtherapistandtheoccupationaltherapistrelatehiseatingproblemstothefactthatheisforgettinghowtoeatandcannolongerswalloweasily.Youparticipateinaninterdisciplinaryteammeeting.ThecaregivingstaffwhoknowRobertwellareinfavorofusingagastrictubefornutrition.Theprimarycarephysicianisnotinfavorofthegastrictubebecauseofthepresenceofdementia,therapiditywithwhichheisdeclining,andthefutilityofanutritionalinterventiontohiseventualoutcome.2.Whatistheethicalissue?ShouldtheguardianconsenttoagastrictubetoprovideMr.Perkinswithnutrition?Howcantheconflictbetweenthecaregivingstaffandprimarycarephysicianbemediated? 3.FrametheIssue

a.Identifytheappropriatedecision-makerAtanearlierageMr.Perkinswascapableofmakingandexecutingsomesimpledecisions(foodpreferences,clothing)butatthepresenttimedementiaisrobbinghimoftheabilitytomeetthethreecriteriatodemonstratedecision-makingcapacity:theabilityto1)understandhisconditionandtreatmentoptions,2)deliberateinaccordancewithhisownvaluesandgoalsandtomakeanuncoerceddecisionamongtreatmentoptions;and3)communicate(verballyornonverbally)thisdecision

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(HastingsCenterGuidelinesforDecisionsonLifeSustainingTreatmentandCareNeartheEndofLife).Theguardianistheprimarydecision-makerandneedstocreateapartnershipandworkcloselywiththeprofessionalteamtomakeandauthorizetreatmentdecisions.b.Applythecriteriatobeusedinreachingclinicaldecisions

1)Thespecificbiomedicalgoodofthepatient2)Thebroadergoodsandinterestsofthepatient3)Thegoodsandinterestsofotherparties

Whileagastrictubemay“solvetheproblem”ofimpairednutritionandreducethelikelihoodofchoking,thereisgeneralmedicalconsensusthatinend-stagedementiathegoalsofcareshouldbetransitionedtopurelypalliativegoals.Thepreponderanceofevidencedoesnotsupporttheuseoffeedingtubesforadultswithadvanceddementia.3Anasogastrictubewillnotcureoramelioratehisdementiaandrapiddecline.ItwouldbeappropriateandnecessaryfortheguardiantoasktheprimarycarephysicianifalltreatablecausesofMr.Perkin’srapiddeclinehavebeenruledoutgiventhefactofMr.Perkin’syoungage(45)andextremelyrapiddecline.Theburdenofproofwouldbeonthecaregivingstafftoprovidearationaleforwhythenasogastrictubeshouldbeinserted.Aretherereligiousorculturalbeliefsorvaluesthatwoulddictateinsertionofthenasogastrictube?Whatiftheburdensassociatedwithafeedingtubeoutweightheanticipatedbenefits?Theredonotseemtobethirdpartyinterestsatstakeinthisdecision.c.Establishthehealthcareprofessionals’andguardian’smoral/professionalobligations.Theprimaryobjectofallclinicaldecisionmakingoughttobetosecurethehealth,well-beingorgooddyingofthepatientandtodothiswhilesimultaneouslyrespectingtheintegrityofthepatientandallthoseinvolvedindecisionmakingandimplementingtheplanofcare.Ifadecisionismadetotransitiontopurelypalliativegoalsandtoforegothefeedingtubeeveryeffortshouldbemadetopreparethepatientforacomfortable,dignifieddeath.Allattentionshouldbedirectedtothepatient(andfamily’s)comfortandpeace.Areferralshouldthenbemadetohospice.

3SampsonEL,CandyB,JonesL.Enteraltubefeedingforolderpeoplewithadvanceddementia.CochraneDatabaseofSystematicReviews2009,Issue2.Art.No.:CD007209.DOI:10.1002/14651858.CD007209.pub2

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4.IdentifyandWeighAlternativeCoursesofActionandThenDecideEthicallyrelevantconsiderations

1)Balancingbenefitsandharmsinthecareofpatients2)Disclosure,informedconsent,andshareddecisionmaking3)Thenormsoffamilylife4)Therelationshipsbetweencliniciansandpatients5)Theprofessionalintegrityofclinicians6)Cost-effectivenessandallocation7)Issuesofculturalandreligiousvariation8)Considerationsofpower4

Basicallytherearetwooptionstoconsider:1)insertionofafeedingtubewiththeprimarytreatmentgoalbeingtostabilizehisfunctioning—evenwiththerapiddeclineanddementiaprogressionor2)transitioningtopurelypalliativegoalswiththeexplicitgoalbeingtopreparehim,hisfamily,caregiversandhousemates(assumingheisinagrouphome)forapeacefulanddignifieddeath.InMr.Perkin’scase,evidence-basedpracticeandthedisproportionateburden-benefitratioassociatedwithfeedingtubesforsomeoneinhisconditionrecommendtransitioningtopalliativegoals.Somebelievethateverypatientshouldbefed—evenwhenthisentailsmedicalnutritionandhydration--andthatfailuretodosoconstitutesgrossneglect.Researchhas,however,nowcounteredthisview.GiventheobviousattachmentMr.Perkin’scaregivershavetohim,carefulattentionshouldbepaidtosupportingthemandhelpingthemtounderstandthedecisionbeingmade.Iftheguardian,Mr.Perkin’scaregivers,andhealthcareprofessionalscannotagreeonacourseofaction,referraltoanethicscommitteeorconsultantshouldbemade.5.CritiqueWhateveralternativeisselected,onceitisimplementedtheguardianshouldcarefullyfollowtheoutcomestoseewhatcanbelearnedthatwouldbehelpfulinasimilarsituationinthefuture.

4Fletcher,J.C.&Spencer,E.M.(2005).Clinicalethics:History,content,andresources.InJ.C.Fletcher,E.M.Spencer,&P.A.Lombardo,Eds.,Fletcher’sintroductiontoclinicalethics,3rded.Hagerstown,MD:UniversityPublishingGroup,p.12.

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Scenario #3 1.WhataretheFacts?LouiseParkerisa65yearoldwomanwithprofoundintellectualdisability.Heroldersisterhasalwaysservedashersurrogatedecision-maker,butshewasrecentlydiagnosedwithadvanceddementia,andyouhavebeenappointedbythecourttoserveasMs.Parker’sguardian.YoureviewthemedicalrecordanddiscoverthatMs.Parkerhasalwaysbeenveryactiveandenjoyedrelativelygoodhealthwiththeexceptionofhighbloodpressurethathasbeendifficulttocontrolovertheyears.Herprimarycarephysicianrecentlyreferredhertoarenalspecialistbecauseherglomerularfiltrationrateis17,whichindicatesthatMs.Parkerwillneedtoconsiderbeginningkidneydialysis.Ms.Parker’sstafftellsyouthattheyhavenoideahowthatwillbeaccomplishedbecausesherequiressedationforroutinedentalexamsandforblooddrawsforroutinetests.Youcheckwithanotherguardianwhotellsyounottoworrybecausesherepresentsseveralpeoplewhoaregivenheavysedativesthreetimesaweekwhentheyreceivedialysis.2.Whatistheethicalissue?Shouldyouconsenttorenaldialysis? 3.FrametheIssue

a.Identifytheappropriatedecision-makerMs.Parkerhasneverbeencapableofmeetingthethreecriteriatodemonstratedecision-makingcapacity:theabilityto1)understandherconditionandtreatmentoptions,2)deliberateinaccordancewithherownvaluesandgoalsandtomakeanuncoerceddecisionamongtreatmentoptions;and3)communicate(verballyornonverbally)thisdecision(HastingsCenterGuidelinesforDecisionsonLifeSustainingTreatmentandCareNeartheEndofLife).Sincetheoldersisterwhoservedashersurrogatedecisionmakernowhasadvanceddementia,thecourtappointedguardianistheprimarydecision-makerandneedstocreateapartnershipandworkcloselywiththeprofessionalteamtomakeandauthorizetreatmentdecisions.b.Applythecriteriatobeusedinreachingclinicaldecisions

1)Thespecificbiomedicalgoodofthepatient2)Thebroadergoodsandinterestsofthepatient3)Thegoodsandinterestsofotherparties

Hemodialysisisatherapythatcompensatesforaperiodoftimeforthefailureofanorgansystemnecessaryforlife.Clearlyrenaldialysisis

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indicatedforMs.Parkerifwearejustlookingtoaddressherfailingrenal(kidney)function.Manyandprobablymost65yearoldswithacomparableglomerularfiltrationrateof17butwithoutthecomplicatingvariablesofMs.Parker’sprofoundintellectualdisabilitywouldopttobegindialysis.Theseindividualswithdecision-makingcapacitywouldmakedecisionsaboutinitiatingandcontinuingdialysisafterthoughtfullyreflectingontheanticipatedbenefitsoftreatmentversustheburdensoftreatment.Decision-makingaboutdialysisrequiresclearcommunicationaboutdiagnosis,prognosis,thepatient’spreferencesandtreatmentoptions,includingtheoptiontoforgolife-sustainingtreatment.5ThecriticalquestioninMs.Parker’ssituationiswhetherornotandhowtheneedtosedateherforeachdialysistreatmentshouldinfluencethetreatmentdecision.Thegrowingtrendistodiscourageinitiatingtreatmentsthatroutinelyinvolvesedation—asopposedtodentalwork,whichmightrequireoneepisodeofsedationannually.InMs.Parker’scaseifdialysiswithsedationreturnshertoherusualactivestateofgoodhealthandthethreetimesweeklyexperiencesofsedationdobegintocompromisehergeneralhealth,itcouldbewarranted.Theonlywaytoknowthiswouldbetoauthorizeatrialbytherapyandtocarefullymonitorwhathappens.Ideally,ifMs.Parkerbecomesacclimatedtothedialysisexperience,shemayeventuallyneedlessandlesssedationwhileexperiencingallthebenefitsofdialysis.Intheeventthisdoesnothappenandtheburdensofsedationanddialysisbecomedisproportionatetothebenefitofimprovedrenalfunction,dialysisshouldbediscontinued.Itisalwaysethicallypermissivetowithdrawatreatmentoncestarted,whichprovestobeineffectiveordisproportionatelyburdensome.Asalways,centraltomakingtreatmentdecisionsisreflectionaboutwhatnotonly“fixes”adiscretemedicalproblem,inthiscaseimpairedrenalfunction,butalsowhatpromotesthewell-beingofthewholeperson.ThirdpartyinterestsatstakeinthisdecisioninvolvethecaregiverswhowillberesponsiblefortransportationandassistanceonthedaystheMs.Parkerisreceivingtreatment.c.Establishthehealthcareprofessionals’andguardian’smoral/professionalobligations.

5Berlinger,N.,Jennings,B.andWolf,S.M.(2013).TheHastingsCenterGuidelinesforDecisionsonLife-SustainingTreatmentandCareNeartheEndofLife.NewYork:OxfordUniversityPress,pp.169.

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Theprimaryobjectofallclinicaldecisionmakingoughttobetosecurethehealth,well-beingorgooddyingofthepatientandtodothiswhilesimultaneouslyrespectingtheintegrityofthepatientandallthoseinvolvedindecisionmakingandimplementingtheplanofcare.Ms.Parker’sguardianandhealthcareprofessionalsneedtoreflectcarefullyonwhatitisreasonabletoexpectifdialysiswithsedationisinitiated.Ifadecisionismadeatpresentoreventuallytotransitiontopurelypalliativegoalsandtoforegothedialysis,everyeffortshouldbemadetopreparethepatientforacomfortable,dignifieddeath.Allattentionshouldbedirectedtothepatient(andfamily’sandcaregiver’s)comfortandpeace.Areferralshouldthenbemadetohospice.

4.IdentifyandWeighAlternativeCoursesofActionandThenDecide

Ethicallyrelevantconsiderations1)Balancingbenefitsandharmsinthecareofpatients2)Disclosure,informedconsent,andshareddecisionmaking3)Thenormsoffamilylife4)Therelationshipsbetweencliniciansandpatients5)Theprofessionalintegrityofclinicians6)Cost-effectivenessandallocation7)Issuesofculturalandreligiousvariation8)Considerationsofpower6

Basicallytherearethreeoptionstoconsider.1)Committorenaldialysiswithsedationandacceptastheoverallgoaltostabilizeherfunctioning,treatingeachnewconditionorcomplicationasitarises.2)Attemptatrialbytherapytodetermineifherneedforsedationcanbemetwithoutdisproportionatelycompromisingherwell-being.Thegoalinthisinstancewouldbetoeventuallydecreaseherneedforsedationasshebecomesacclimatedtotheexperienceofdialysis.Herealsotheoverallgoalistostabilizeherfunctioning.Iftheburdensassociatedwithsedationanddialysisbecomedisproportionatetothebenefitsofimprovedrenalfunction,dialysiscanbestoppedandMs.Parkertransitionedtopurelypalliativegoals.3)MakeadecisionthatevidencesupportsnotattemptingatrialbytherapyandtransitionimmediatelytothegoalofallowingthecompromisedrenalfunctiontocontinueandpreparingMs.Parkerforacomfortableanddignifieddeath.Inthisinstanceareferraltohospiceisimperative.

6Fletcher,J.C.&Spencer,E.M.(2005).Clinicalethics:History,content,andresources.InJ.C.Fletcher,E.M.Spencer,&P.A.Lombardo,Eds.,Fletcher’sintroductiontoclinicalethics,3rded.Hagerstown,MD:UniversityPublishingGroup,p.12.

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Inthisinstancewewouldrecommendthetrialbytherapyunlesstheexperienceofinvolvedhealthcareprofessionalsinnumeroussimilarsituationsconvincesthemthatthecumulativeburdensoftheongoingneedforsedationanddialysisareboundtooutweighthebenefitsofimprovedrenalhealth.ThosewhoknowMs.Parkerbestarebestsituatedtoassessthelikelihoodthatherneedforsedationwilldecreaseasshebecomesacclimatizedtotheexperienceofdialysis.Iftheguardian,Ms.Parker’scaregivers,andhealthcareprofessionalscannotagreeonacourseofaction,referraltoanethicscommitteeorconsultantshouldbemade.5.CritiqueWhateveralternativeisselected,onceitisimplementedtheguardianshouldcarefullyfollowtheoutcomestoseewhatcanbelearnedthatwouldbehelpfulinasimilarsituationinthefuture.

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Scenario #4 1.WhataretheFacts?JohnRosarioisan85-year-oldmanwithprofoundintellectualdisability.Youhavebeenhisguardianforthepast5years,sincehisonlybrother,whohadbeenhishealthcaredecision-maker,diedsuddenly.YouknowthatwhenJohnwasachild,hewasplacedinthestateinstitution,wherehelearnedtoenjoycigarettesmoking.Hecontinuedsmokingahalfapackadayuntilhewas60yearsold.JohnwasrecentlydiagnosedwithStage4lungcancer.Youelectedtonotseekchemotherapyorradiationtreatmentbasedonyourinterpretationofthemedicalrecommendationsgiventoyou.WhenyouvisitJohn,heactuallydoesnotappearmuchdifferenttoyoufrombeforethecancerdiagnosis.HelikestowatchTV,stillenjoyseatinghisfavoritefoods,buthasrecentlystoppedgoingtochurchbecausehegetstootired.YouarenotifiedthatJohnhasbeenadmittedtothehospitalwithpneumonia.Thedoctorintheemergencydepartmentcallsyoutoreceiveconsenttotreatthepneumonia.Youaresurprisedthatyouarebeinggiventhealternativenottotreatthepneumonia.2.Whatistheethicalissue?Shouldyouconsenttotheantibiotictreatment? 3.FrametheIssue

a.Identifytheappropriatedecision-makerMr.Rosariohasneverbeencapableofmeetingthethreecriteriatodemonstratedecision-makingcapacity:theabilityto1)understandherconditionandtreatmentoptions,2)deliberateinaccordancewithherownvaluesandgoalsandtomakeanuncoerceddecisionamongtreatmentoptions;and3)communicate(verballyornonverbally)thisdecision(HastingsCenterGuidelinesforDecisionsonLifeSustainingTreatmentandCareNeartheEndofLife).Sincethedeathofhisbrotherwhoservedashissurrogatedecisionmaker,thecourtappointedguardianistheprimarydecision-makerandneedstocreateapartnershipandworkcloselywiththeprofessionalteamtomakeandauthorizetreatmentdecisions.b.Applythecriteriatobeusedinreachingclinicaldecisions

1)Thespecificbiomedicalgoodofthepatient2)Thebroadergoodsandinterestsofthepatient3)Thegoodsandinterestsofotherparties

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Treatmentforpneumoniainvolvescuringtheinfectionandpreventinganycomplications.7Specifictreatmentsdependonthetypeandseverityofthepneumonia,andthepatient’sageandoverallhealth.Theoptionsinclude:

• Antibiotics,totreatbacterialpneumonia.Itmaytaketimetoidentifythetypeofbacteriacausingthepneumoniaandtochoosethebestantibiotictotreatit.Symptomsoftenimprovewithinthreedays,althoughimprovementusuallytakestwiceaslonginsmokers.Ifthepatient’ssymptomsdon'timprove,thedoctormayrecommendadifferentantibiotic.

• Antiviralmedications,totreatviralpneumonia.Symptomsgenerallyimproveinonetothreeweeks.

• Feverreducers,suchasaspirinoribuprofen.

• Coughmedicine,tocalmthepatient’scoughsohe/shecanrest.Becausecoughinghelpsloosenandmovefluidfromyourlungs,it'sagoodideanottoeliminatethecoughcompletely.

HospitalizationThepatientmayneedtobehospitalizedif:

• He/sheisolderthanage65

• He/shebecomesconfusedabouttime,peopleorplaces(asaresultoftheinfection)

• His/hernauseaandvomitingpreventthepatientfromkeepingdownoralantibiotics

• His/herbloodpressuredrops

• His/herbreathingisrapid

• He/sheneedsbreathingassistance

• His/hertemperatureisbelownormal

Ifthepatientneedstobeplacedonaventilatororthesymptomsaresevere,thepatientmayneedtobeadmittedtoanintensivecareunit.

Mr.Rosario’sguardianseemssurprisedtobeaskedtoconsenttohiswardreceivingantibioticsbecauseoralmedicationsseemasimplesolutiontoapotentiallylife-threateninginfection.Whattheguardianmaynotrealizeisfirst,treatmentmay7TheMayoClinic.Availableat:http://www.mayoclinic.com/health/pneumonia/DS00135/DSECTION=treatments-and-drugs

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involveparenteralmedications(medicationsdeliveredoutsidethedigestivetract)andrehydrationtherapyandeventransfertoanintensivecareunitforventilatorysupport,andsecond,thereisanactivedebateintheliteratureaboutpneumoniabeingtheoldperson’sfriend,forthosebelievethattherearethingsworsethandeathandwhoprefertodiesoonerratherthanlater.8Likeanyotherproposedmedicaltreatment,antibioticsmayberefusedifajudgmentisreachedthattheyaremedicallyineffectiveoriftheassociatedburdensarejudgedtooutweightheanticipatedbenefits.Atthetimeoftheguardian’slastvisitwithMr.Rosario,Johnwasperceivedasnotbeingmuchdifferentthanbeforehisstagefour-lungcancerwasdiagnosed.Ifthisisthereforeatreatablepneumoniawiththebenefitsoftreatmentoutweighingrelatedburdens,thedecisiontoconsenttoantibioticsseemsimple.UnlesstheguardianhasreasontobelievethatMr.Rosariowouldpreferdeathfromatreatablepneumoniatolivingthelifehehasleftwithhisstagefour-lungcancer—orthattreatmentwouldnotsecurehisbestinterests,treatmentisindicated.Ifyoubegintreatmentandthepneumoniaadvancesrequiringfurtherinterventionsand/orhiscancerprogresseswithnewandproblematiccomplications,thedecisiontotreatthepneumoniacanberevisited.Itisalwaysethicallypermissivetowithdrawatreatmentoncestarted,whichprovestobeineffectiveordisproportionatelyburdensome.Asalways,centraltomakingtreatmentdecisionsisreflectionaboutwhatnotonly“fixes”adiscretemedicalproblem,inthiscaseimpairedbacterialpneumonia,butalsowhatpromotesthewell-beingofthewholeperson.

Theredonotseemtobethirdpartyinterestsatstakeinthisdecision.

c.Establishthehealthcareprofessionals’andguardian’smoral/professionalobligations.Theprimaryobjectofallclinicaldecisionmakingoughttobetosecurethehealth,well-beingorgooddyingofthepatientandtodothiswhilesimultaneouslyrespectingtheintegrityofthepatientandallthoseinvolvedindecisionmakingandimplementingtheplanofcare.Mr.Rosario’sguardianandhealthcareprofessionalsneedtoreflectcarefullyonwhatitisreasonabletoexpectifantibioticsorothermedicaltreatmentsforpneumoniaareinitiated.Ifadecisionismadeatpresentoreventuallytotransitiontopurelypalliativegoalsandtoforegotheantibiotics,everyeffort

8vanderSteenJT,deGraasT,OomsME,vanderWalG,RibbeMW.(October2000).Whenshouldphysiciansforgocurativetreatmentofpneumoniainpatientswithdementia?Usingaguidelinefordecision-making.WesternJournalofMedicine,173(4),274-277.

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shouldbemadetopreparethepatientforacomfortable,dignifieddeath.Allattentionshouldbedirectedtothepatient(andfamily’sandcaregiver’s)comfortandpeace.Areferralshouldthenbemadetohospice.

4.IdentifyandWeighAlternativeCoursesofActionandThenDecide

Ethicallyrelevantconsiderations1)Balancingbenefitsandharmsinthecareofpatients2)Disclosure,informedconsent,andshareddecisionmaking3)Thenormsoffamilylife4)Therelationshipsbetweencliniciansandpatients5)Theprofessionalintegrityofclinicians6)Cost-effectivenessandallocation7)Issuesofculturalandreligiousvariation8)Considerationsofpower9

Basicallytherearethreeoptionstoconsider.1)Consenttotheuseofantibioticsandacceptastheoverallgoaltostabilizehisfunctioning,treatingeachnewconditionorcomplicationasitarises.2)Attemptatrialbytherapytodetermineifhispneumoniacanbesuccessfullytreatedwithoutfurthercomplicationsanddisproportionatelycompromisinghiswell-being.Herealsotheoverallgoalistostabilizehisfunctioning.Iftheburdensassociatedwithtreatingthepneumoniaorworseningcancersymptomsbecomedisproportionatetothebenefitsassociatedwithtreatment,antibiotictherapyandothertreatmentscanbestoppedandMr.Rosariotransitionedtopurelypalliativegoals.3)MakeadecisionthatMr.Rosario’sinterestsandwell-beingarebestservedbynotattemptingatrialbytherapyandtransitioningimmediatelytothegoalofpreparationforcomfortableanddignifieddeath.Inthisinstanceareferraltohospiceisimperative.UnlessthanisanyreasontobelievethatMr.Rosariowelcomespneumoniaasthe“oldperson’sfriend”andwouldchoosetodiesoonerratherthanlater(anditisdifficulttoimaginehowanyonewouldknowthis)atrialbytherapyshouldbecommencedandantibioticsstarted.Iftheguardian,Mr.Rosario’scaregivers,andhealthcareprofessionalscannotagreeonacourseofaction,referraltoanethicscommitteeorconsultantshouldbemade.9Fletcher,J.C.&Spencer,E.M.(2005).Clinicalethics:History,content,andresources.InJ.C.Fletcher,E.M.Spencer,&P.A.Lombardo,Eds.,Fletcher’sintroductiontoclinicalethics,3rded.Hagerstown,MD:UniversityPublishingGroup,p.12.

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5.CritiqueWhateveralternativeisselected,onceitisimplementedtheguardianshouldcarefullyfollowtheoutcomestoseewhatcanbelearnedthatwouldbehelpfulinasimilarsituationinthefuture.

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Scenario #5 1.WhataretheFacts?Denise Miller is a 62-year-old nonverbal female diagnosed with profound intellectual disability (ID). You are her court-appointed guardian. Her medical diagnoses include seizure disorder, Crohn’s disease, diverticulitis, and reflux esophagitis. In 1954 she had a craniotomy for a subdural effusion. She was recently hospitalized after developing cellulitis in her left leg with notable swelling in the shin area. She is on a low fat, chopped diet and has had a history of gastrointestinal (GI) concerns. Admitting diagnosis is osteomyelitis of the left leg (previous rod insertion from a broken leg). She was hospitalized for two months and at some point during her hospitalization she developed a GI bleed and aspirated and had to be transferred to a long term acute care (LTAC) hospital for IV antibiotic treatment of her osteomyelitis and aspiration pneumonia. During her LTAC stay, she stopped eating, had a seizure lasting more than 5 minutes, and was transferred back to the hospital emergency room for further evaluation. While she is at the hospital for treatment of the seizure, you are approached and asked to consent to the placement of a feeding tube because of her decreased appetite and weight loss. 2.Whatistheethicalissue? Shouldyouconsenttoagastrictubetoprovideherwithnutrition? 3.FrametheIssue

a.Identifytheappropriatedecision-makerThefactsaspresenteddemonstratethatMs.Millerisunabletomeetthethreecriteriatodemonstratedecision-makingcapacity:theabilityto1)understandherconditionandtreatmentoptions,2)deliberateinaccordancewithherownvaluesandgoalsandtomakeanun-coerceddecisionamongtreatmentoptions;and3)communicate(verballyornonverbally)thisdecision(HastingsCenterGuidelinesforDecisionsonLifeSustainingTreatmentandCareNeartheEndofLife).Theguardianistheprimarydecision-makerandneedstocreateapartnershipandworkcloselywiththeprofessionalteamtomakeandauthorizetreatmentdecisions.

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b.Applythecriteriatobeusedinreachingclinicaldecisions

1)Thespecificbiomedicalgoodofthepatient2)Thebroadergoodsandinterestsofthepatient3)Thegoodsandinterestsofotherparties

ThedecisionaboutwhetherornottoinsertagastricfeedingtubewillturnonajudgmentaboutMs.Miller’sabilitytoingestandswallowfoodsafelyinthefuture.Theguardianshouldnotauthorizeplacementofthegastrictubeuntil(s)helearnswhyMs.MillerstoppedeatingintheLTACandsufferedweightloss.Itissadlynotuncommoninnewsettingsforfoodtraystobeplacedinfrontofpatientswithdisabilitieswithoutanyonefirstdeterminingthedegreeofassistanceneededtobringfoodtothemouth.SinceMs.Millerhasalwaysrequiredassistancewithfeeding–itshouldbenosurprisethatmanyfoodtrayswentbacktothekitchenuntouchedifnoassistancewasofferedherintheLTAC.TheguardianshouldrequestthatatrialofofferingassistanceatmealstimebeattemptedandthatMs.Miler’susualcareattendantsbeconsultedaboutherfoodpreferencesandanymealtimeprotocolsthatarefollowedtofacilitatehereating.Alternatively,itmaybethecasethatMs.Miller’sworseningmedicalconditionaggravatedbytheosteomyelitisandgastrointestinalbleedingandnewseizureactivityhaveweakenedhertothedegreethatherreturntoherpre-hospitalizationbaselineisnolongerpossible.Inthisevent,herlossofappetitemaysignalthebody’sbeginningtoslowdown.Ifthisisthecase,therearethreeoptions.Theguardianmightauthorizeatrialofartificialnutritiontoseeifimprovednutritionstrengthenshertothepointthatsheresumesthedesireandabilitytotakefoodsbymouth—inwhichcasetheartificialnutritionwouldbestopped.Alternatively,thegastrictubemaysimplybeplacedandartificialfeedingscontinueduntilthebodycannolongerreceivethem.Thethirdoptionwouldbetotransitiontopurelypalliativegoals,attempthand-feeding,butifitisunsuccessful,makenoefforttoinitiateartificialfeedings—anoptionthatseemsprematureatthispoint.Asinallsituationsdecisionsaboutartificialfeedingentailmakingjudgmentsaboutwhetherornotsuchfeedingisconsistentwiththeoveralltreatmentgoal(stabilizefunctioningorprepareforacomfortableanddignifieddeath)andwhetherornottheanticipatedbenefitsoutweightheburdensassociatedwithartificialfeeding.ItisimportanttorememberthatforindividualslikeMs.Millermealtimesmaybeoneofthemostenjoyabletimesofthedayifthecaregiverusesofferingassistancewithfeedingtodemonstratecompassionateandwarmhumanpresence.Havingsomeonecometoyourroomtodropacanoffeedingsolutionintoabaginnowaycomparestotheexperienceofbeinghandfed.

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Stoppingtoquestionwhatinfluence,ifany,Ms.Miller’sintellectualdisabilityhasondecision-making,theguardianshouldbeconfidentthat(s)heismakingthesamedecisionforMs.Millerthatwouldbemadeforapersoninasimilarmedicalconditionwhodidnothaveanintellectualdisability.Therearenoimmediatethirdpartiestobeconsideredwhenthisdecisionismade.c.Establishthehealthcareprofessionals’andguardian’smoral/professionalobligations.Theprimaryobjectofallclinicaldecisionmakingoughttobetosecurethehealth,well-beingorgooddyingofthepatientandtodothiswhilesimultaneouslyrespectingtheintegrityofthepatientandallthoseinvolvedindecisionmakingandimplementingtheplanofcare.TheguardianandprofessionalcaregiversshouldworktogethertodevelopaplanforfeedingMs.Millerthatpromotesheroverallwell-being—notonethatmerelysolvestheimmediate“problem”ofweightloss.

4.IdentifyandWeighAlternativeCoursesofActionandThenDecideEthicallyrelevantconsiderations

1)Balancingbenefitsandharmsinthecareofpatients2)Disclosure,informedconsent,andshareddecisionmaking3)Thenormsoffamilylife4)Therelationshipsbetweencliniciansandpatients5)Theprofessionalintegrityofclinicians6)Cost-effectivenessandallocation7)Issuesofculturalandreligiousvariation8)Considerationsofpower10

ThiscasescenarioisinterestingbecausewebasicallyhaveprofessionalcaregiverswantingtobenefitMs.Miller—butmakingdecisionswithaninadequatedatabase.Goodclinicaldecisionscannotbemadewithoutgooddata.Wealsoseeinthiscasethecultureofmedicineprioritizingthetreatmentofmedicalconditions(osteomyelitis,gastrointestinalbleed,seizures)whilesimultaneouslyfailingtopayattentiontothewholeperson—andher/hisneedforassistancewiththesimpleactivitiesofeverydayliving—inthiscase,eating.Itunderscorestheneedforthe10Fletcher,J.C.&Spencer,E.M.(2005).Clinicalethics:History,content,andresources.InJ.C.Fletcher,E.M.Spencer,&P.A.Lombardo,Eds.,Fletcher’sintroductiontoclinicalethics,3rded.Hagerstown,MD:UniversityPublishingGroup,p.12.

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guardiantohaveestablishedacloserelationshipwiththedailycaregiverswhoknowMs.Millerbestandtobeconfidentinrelayingtheirexperienceandexpertisetoprofessionalcaregiversinthehospital.5.CritiqueWhateveralternativeisselected,onceitisimplementedtheguardianshouldcarefullyfollowtheoutcomestoseewhatcanbelearnedthatwouldbehelpfulinasimilarsituationinthefuture.

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