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