【体外膜肺ECMO课件】-End-of-Life-Care-on-the-NICU

End-of-LifeCareontheNICUCaringConcernedCompetentCompassionateHealthcareTeamEthicalIssues/AreasinPerinatal-NeonatalMedicineLimitsofviability:22-24weeks’gestationCongenitalanomaliesPrenatalFetalsurgeryPostnatal-genetic,multipleanomaliesNonresponsivenesstotherapyChroniclungdiseasePerinataldistressIntraventricularhemorrhageNewbornInfantsforWhomEthicalDecision-MakingisOftenRequiredExtremeprematurity(limitsofviability—22-24weeks)—morbidity(CNS,pulmonary),gestationalageFull-term—severeperinatalasphyxiaGeneticdisordersMultiplecongenitalanomalies(e.g.,trisomy13)NewbornInfantsforWhomEthicalDecision-MakingisOftenRequiredHypoplasticleftheartsyndrome,complexcyanoticheartdiseaseSevereintraventricularhemorrhageRequirementsfor“hightechnology”(transplant,ECMO)Non-responsivenesstointervention(e.g.,worseningchroniclungdisease-ventilatordependent,shortgut,sepsis)EthicalDilemmasintheNICU—CommonQuestionsWouldyouofferlife-sustainingmedicaltreatmentatparents’requestinspiteofyourmedicaljudgmentthatwithholdingtreatmentisthepreferred(medical)courseofaction?Doessuchtreatmentresultingreatersuffering?Areparentsofcriticallyillnewborninfantsequippedtomakeappropriateethicaldecisionsregardingtheirchild?Howaretheseparentsbestequippedtomakesuchdecisions?Whatistheroleofthehospitalethicscommittee?Whatistheroleofthelegalsysteminethicaldecisionmaking?Statelegislature?EthicalDilemmasintheNICU—CommonQuestionsWhatdoyoudoiftheparents’wishesregardingtheirchild’scaredifferfromyoursandfromtheacceptedmedicalcare—theparentswant“fullsupport”orwant“noresuscitation,”whichisdifferentfromacceptedstandardofcare?Shouldtheinfant’slong-termprognosis(qualityoflife)affectdecisionmaking?Shouldresourceallocation(finances,beds,staffing)orpsychosocialissues(e.g.,breakupofamarriage)bepartofthemedicaldecision?EthicalDilemmasintheNICU—CommonQuestionsWhoshouldbeinvolvedinmedicaldecisionsofwithholding/withdrawingorsustainingcareforaninfant?Parents,familymembers(whichones)?Physician?Nursing?Otherhealthcareprofessionals(socialworker,clergy)?Ethicscommittee?Courts?Statelegislature?Shouldyouprovidefluidsandnutritionaspartofcaretoeveryinfant,evenwhenwithholdingorwithdrawingsupport?Antibiotics?Treatmentofhypotension?Analgesicsforpain?Iseuthanasiainaninfantwithhopelessandunbearablesufferingeveracceptable?(parentalagreement,Netherlands)EthicalDilemmainPatientCareShouldweresuscitatea24-26weekgestationalageinfantagainstparentalwishes?25%chanceofsurvivalwithoutdisabilityat25weeks(12%at24weeks,5-10%at23weeks)BestinterestsofinfantNICUcare:3-4months,reducedmaternalcontact,painfulprocedures,poornutritionSocialinfluences:parentsin40s?Pregnancy-invitrofertilization?Bothparentsdesireintervention?Unplannedpregnancy?Parentsyoungandundecidedor“doeverything”?EthicalIssues/AreasinPerinatal-NeonatalMedicine-NotDiscussedGenetictesting/screening,fetalsurgeryCloning,assistedreproductivetechnologiesPatientrefusaloftreatment(obstetrics)SelectivereductionoffetusesTerminationofpregnanciesSelectiondeterminationinmonochorionictwins(complicated)

InformedconsentWeneedtoconvinceourprofessionthatitsawesometechnicalpowercarrieswithitanequalresponsibilitytobehavereasonably…

FromSilvermanWA.Pediatrics98:1182,1996MoralPrincipleofNonmaleficenceAboveallelse:

Do

No

HarmPrincipleofBeneficenceDoalltobenefitthepatientThewell-beingofthepatient-primarygoalofhealthcarePatient-oriented-ValueHumanLifePrincipleofEquity-JusticeObligationofsocietytopatientIssuesoflimitedresourcesAllocateresourcesequitably-NoDiscriminationontheBasisofDisabilityEthicsandtheNICUHealthcaredecisionsmustreflectthe“bestinterests”oftheinfant“BestInterests”SubjectiveMaximizebenefits,minimizeharmtotheinfantinproposedcourseofactionandbenefit/harmratioismorefavorablethanwithothercoursesofaction“BestInterests”oftheChild

intheNICUOftentranslatedintoslogan,“betteroffdead”Permanenthandicapsjustifyadecisionnottoprovidelife-sustainingtreatmentonlywhentheyaresosevereastobeofnonetbenefittotheinfant…netbenefitisabsentONLYiftheburdensimposedonthepatientbythedisabilityoritstreatmentwouldleadacompetentdecisionmakertochoosetoforegothetreatmentEthicalDecisionsintheNICU-DefinitionsFutile:treatmentthatwillNOTsignificantlyextendlifeorpostponedeathBeneficial:situationinwhichpotentialmedicalbenefitsoftreatmentclearlyoutweighrisksPeerzadaJM,etal.JPediatr145:492,2004Neonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivorsWithholding- omitaformoftreatmentnotconsideredbeneficialWithdrawal- removetreatmentthathasnotachievedbeneficialintentorisineffectiveEthicsandtheNICUEqualfromamoral,legalperspectiveNeonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivors

IsNOTgivingepinephrineanddoingchestcompressionsonahypotensive,bradycardicprematureinfantonaventilatoranddopamine(withholdingcare)thesameasremovaloftheendotrachealtubeatoneday,oneweekoronemonthchronologicalage(withdrawal)fromasimilarinfant(futility)orfromafull-term,physiologicallystableinfantwithasevereneurologicinsult(IVH-prematureinfant,asphyxia,chromosomalanomalies—qualityoflife?)?EthicalDilemmasintheNICUNeonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivors

Withdrawingsupport(e.g.,ventilation)isoftenmoreemotionallychargedandpsychologicallydifficultforparentsandphysiciansandthehealthcareteamthanwithholdingtherapyWithdrawingvs.WithholdingCareAnnasGJ.NEJM357:218,2004EthicalDilemmasintheDeliveryRoomandontheNICUWithdrawalversuswithholdWithhold-maypreventparentalandphysiciananxiety,infantpainandsufferingWithdrawal-ethically,maybebettersincesomemaybenefitfromtreatmentinthedeliveryroomWhentoconsiderwithdrawal?Continuousre-evaluationontheNICUParentslesslikelytoagreewithphysicianrecommendationsforwithdrawalExamineinfant-confirmfindingsMoredefinedriskofpooroutcome(?),infantsufferingDeliveryRoomResuscitationParentsusuallydesireinterventiontosavetheinfant,irrespectiveofbirthweightorconditionatbirth,asopposedtohealthcareprofessionalsMostneonatologistsinitiateresuscitationandintensivecareat24weekswithsubsequentre-evaluationanddecisionmakingifdeteriorationornoimprovementontheNICU—Whatadditionalinformationislearned?HowmuchsufferingwilloccurontheNICU?Discussions/Decisionsinthedeliveryroom,inacrisissituation,areoftendifficultToWithholdorWithdrawDoesnotimplyachildwillreceivenocareSignalsachangeinfocustowardpalliativeorcomfortcare,makingsurethattherestofthechild’slifeisascomfortableaspossibleEthicallyandlegally,withholdingandwithdrawaloflife-sustainingtreatmentareequivalent—butemotionally,theyaresometimespolesapartDeathandDyingintheNICU

1988-1998Withholdingorwithdrawinginterventions 25%(6%)* 46%(4%)*Activewithdrawal-regardlessof physiologicalstability 10% 42%† Moribund(futility) 7% 29% Stable(e.g.,neurologicdisorder, Trisomy13,benefits>burden) 3% 13%DNRordersbeforeCPRadministered 36%†

85%†NoCPRbeforedeath 16%† 69%†

Moredeathsinparents’armsafterextubationwithoutCPRorepinephrineboluses

MoreHumaneApproachtoCareFromSinghJ,etal.Pediatrics114:1620,2004*withholdingcareinthedeliveryroom†p<0.0011988

1998EthicsandtheNICUWhatissuccessontheNICUtothedeliveringphysician-goodApgars?Neonatologysuccess-discharge,survivalfor28days?Whatisthedefinitionofsuccessforparents?EthicsandtheNICUWhatisconsidereda“bad”or“unacceptable”outcome?Orasuccess?Bywhom?Mentalretardation(mild,moderate,severe)Cerebralpalsy(non-ambulatory,partlyambulatory)VisionorhearinglossHomeventilationLaterpsychiatricdisorders,behavioraldisordersLearningdisabilities-specialeducationHowhighariskofsevereoutcomeisacceptable?WhoseValuesareMostImportant?Inthecaseofverylowbirthweightbabies,forexample,differentstudieshaveinterpretedthesamefactsdifferently...Onestudy...assessedsurvivabilityasagoodoutcome,whileotherstudiesconsideredonlysurvivalwithoutdevastatingneurologicaldeficitstobeagoodresult...Somephysicians...claimedthatevena1%chanceofsurvival,whatevertheneurologicaldevastation,wasagoodoutcome.Manynurses,bycontrast,feltthatthepursuitofsurvivalatallcostsisunacceptable.BoylePJ,CallahanD.Physician’suseofoutcomedata.In:BoylePJ,ed.GettingDoctorstoListen.Washington,DC:GeorgetownUniversityPress,1998Neonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivors

WehaveNOrighttoimposeexperimentaltherapiesonnewborninfantsof22and23weeks’gestationalageinviewoflackofdatademonstratingeffectivenessofcareEthicsandtheNICUVermontOxfordNetwork,2004AnnualMeetingFetalInfants—401-500GramsBirthWeightAdmitignorance-knowlittle-bleakprognosisSeekassistancefromparents-treatvs.comfortcareNeedfollow-updataNOTmiraclebabies-weareNOTmiracleworkersnortechnologicalcraziesLuceyJF.Pediatrics113:1819,2004AForty-YearHistoryofEthicalDilemmasintheNICUInfantwithDownsyndromeandduodenalatresiaDeathfromstarvation,dehydrationatparents’request1973 Physicianallowed43infantstodieover30months(multipleconditions) (YaleSeries)Parentsandphysician-jointdecisionmaking

“Imperilednewborns”1963 OutcomeWeneedtoconvinceourprofessionthatitsawesometechnicalpowercarrieswithitanequalresponsibilitytobehavereasonably…

FromSilvermanWA.Pediatrics98:1182,1996IftheBaby’sNot‘Meaningful,”KillItByGeorgeF.WillTheWashingtonPostAForty-YearHistoryofEthicalDilemmasintheNICUBabyDoe-trisomy21withTEfistula(Indiana);obstetrician:notherapyPediatriciancourtagreedwithparents/OBphysiciantoallowchildtodiewithoutsurgeryBabyDoeRegulations-topreventdiscriminationagainstindividualswithhandicaps,andsuchindividualsaretoreceivetreatmentwithoutconsiderationofqualityoflife

Allinfants(excludingextremelyprematureinfantsandthosewithanencephaly)receivelife-savingtreatmentwithoutconsiderationofqualityoflife;exceptions:irreversiblecoma,futileand/orinhumantreatment1984 OutcomeAForty-YearHistoryofEthicalDilemmasintheNICUPhysiciansterminatingtreatmentbecauseofqualityoflifeissues?Hotline-reportnon-treatmentSignsBabyDoeSquadstoconductreviewsStateChildProtectionUnit-“medicalneglect”Ethicscommittees1986 BabyJaneDoe-myelomeningoceleandhydrocephalusSupremeCourtupheldparents’wishesnottotreat1984 OutcomeWeneedtoconvinceourprofessionthatitsawesometechnicalpowercarrieswithitanequalresponsibilitytobehavereasonably…

FromSilvermanWA.Pediatrics98:1182,1996BigBrotherintheNurseryGordonB.Avery.StarTribune:April13,1983,p.15AAreNeonatologistsOutofTouchwithReality?…Wefindthescenarios(ofneonatologists)forquality-of-lifeevaluationstobeoutoftouchwiththeharshrealitiesofourchildren’slives.Whereisthedescriptionofthemonthsoryearsofgruelinghospitalizationwiththeassociatedgastrostomytubes,jejunostomytubes,andfundoplications;thetracheostomies,shunts,andorthopedic,eye,andbrainsurgeries;hyperalimentation,oxygentanksandventilators?(continued)AreNeonatologistsOutofTouchwithReality?Similarly,therewasnomentionofbankruptcies,divorces,mentalandphysicalbreakdowns,deathinlatechildhood,neglectedsiblings,andsuicidescausedbytheextreme

burdensofcaringforseverelymedicallyanddevelopmentallycompromisedchildren.CulverG,etal.JAMA.June28,2000“Davidwillbe9onMay8.Iconsiderthistheninthyearofmyjailsentence.Evenkillersgetoutonparole.Nottheparentsofmicro-preemies,whosufferbraindamagefrombeingintubated,respirated,poked,prodded,bledandbarelyfed.Hospitalgets$500Kfromourprivateinsurance.Wegetalifeofbrokendreamsandsleeplessnights.”Fatherofamicro-preemieTheLongDyingofBabyAndrewRobert&PeggyStinson

AtlanticMonthlyPressBook,1983ChildAbuseAmendments-1984DirectfederalinterventioninNICUsceasedStatessetupsystems(preservefederalchildabusefunds):EnsureallnewbornchildrenareprotectedagainstdiscriminationbasedondisabilityExceptions:Permanentlycomatose,neardeathortreatmentisinhumanebecausefutilityAMA,AAP:policiesfortreatmentregardlessofdisabilityandqualityoflifeInitialresults:lessdefermenttoparentalwishesRobertsonJA.NeonatalIntensiveCare18:19,2005ChildAbuseAmendments:

WhenTreatmentisNOTMandatedInfantisdying—treatmentwill

prolongthedyingprocessInfantischronicallyandirreversiblycomatoseorunresponsivetotheenvironmentdespitetreatmentTreatmentisfutile,excessivelyburdensomeand/orinhumaneRespecttheintrinsic

dignityandworthoftheinfantProvidecomfort,relievepainandsufferingAForty-YearHistoryofEthicalDilemmasintheNICU23wk,615ginfantwhosefatherrefusedtosignformpermittingresuscitationResuscitatedandcomplexhospitalcoursewithseveresequelaeatfollowupSuedforbatteryandwon($64million)butoverturnedonappealSupremeCourt:unabletoevaluatefortreatmentuntilbirthandmayactinemergenciestopreventharm(outweighharmfromtreatment)NotconcernedwithmanagementonNICU2000 OutcomeMillerCase—PotentialConsequencesoftheTexasSupremeCourtRulingEmergencycircumstancesexceptionMaximalmedicaltreatmentforallinfants-extendtootherstatesNotintendedforeveryone’sinfantReversalofantepartumdecisionsanddeliveryplanningforcomfortcareat20-24weeks’gestationorifsevereanomaliesParentsnotallowedtodenylife-sustainingtreatmentforchild(“notallowedtoletchilddie”)QualityofLifeandWithholdingandWithdrawalofSupportAmericanCollegeofObstetriciansandGynecologists*23-24weeks’gestation:initialmanagementconsistentwithparentalwishesFetusandNewbornCommittee,AcademyofPediatrics†Uncertainfetalprognosis,counselingmayresultinthefamilychoosingnottoactivelyinterveneNeonatologists,bioethicistsPresident’sCommissionfortheStudyofEthicalProblemsinMedicine-1983*ObstetGynecol100:617,2002†Pediatrics110:1024,2002EthicalDecision-MakingFrameworkfortheManagementofSeriouslyIllNewbornInfantsPhysician’sassessmentoftreatmentoptionsClearlybeneficial*Ambiguous/uncertainFutile*ParentsprefertoacceptcareProvidetreatmentProvidetreatmentProvidetreatmentunlessproviderdeclinesParentsprefertoforegocareProvidetreatmentduringreviewprocessForegotreatmentForegotreatmentPresident’sCommissionfortheStudyofEthicalProblemsinMedicine.Washington,DC:GovernmentPrintingOffice,1983InPeerzadaJM,etal.JPediatr145:492,2004*Beneficial: MedicalbenefitsoftreatmentoutweighrisksFutile: TreatmentthatwillnotextendlifeorpostponedeathNICUCareTechnologyhasadvancedmuchmorerapidlyincuringoratleastpalliatingill,oftenverypremature,newborninfantsthanourabilitytoinvolveparents(andsociety)inethicaldecisionmaking,leadingsometimestoprolongedsufferingandpainfulandexpensiveNICUhospitalizationsThishasledtodrasticparentalmeasures:fatherremovingchildfromventilationwhileholdingcaregiversatgunpoint(acquitted)orcoupleremovingchildfromassistedventilationafterleftalone(acquitted)EthicalDecision-MakingontheNICUParentsplusPhysicians,NursesRelativesClergyOtherSupportPeopleNeonatalEthicsCommitteeResolutionChildProtectiveAgencyCourtNeonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivors

Givingparentstherighttomaketreatmentdecisionsincollaborationwiththehealthcareteamandwhenreasonablemedicaloptionsexist,includingdiscontinuingsupport,isconsistentwithbasiclegalprinciplesandgoodmedicalpracticeEthicalDecisionMakingintheNICUColeFS.NEJM343:429,2000AnnasGJ.NEJM351:2118,2004LivingwithDisabilityManypeoplewithasevereimpairment(s)livealifeofhighquality-avoidoverlypessimisticviewsSocietymustNOTdevaluedisabledpeopleThereareindicationsofdiscriminationagainstthesechildreninmedicineTheburdenisalsofortheparentsSocietymustdeterminehowbesttoshareitTheSilentTreatment“Teamshatetolosetousbecausetheythinkwe’rehandicapped,”signsGonzales.“Butwe’renothandicapped.Wejustcan’thear.”

—RickReilly,SportsIllustrated

(reilly@)Neonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivorsKnowledgeoftherangeofethicallysupportableandacceptableoptionsmustbeunderstoodandsharedwiththefamilydecisionmaker(s)andtheprofessionalmustbepreparedtosupportthechoiceofthefamily.Thechoice,ofteninthegrayzone,maynotbeourchoiceforourownchild(mostprofessionalshavenothadtomakesuchdifficultchoicesconfrontingthefamilieswithwhomweareworking).EthicsandtheNICUHartlineJV.JPerinatol21:248,2001WaitingwithGabrielAstoryofcherishingababy’sbrieflife—AmyKuebelbeck—

LoyolaPress,Chicago,2003RecentNICUPatientsPosingEthicalDilemmas300gm,26weekinfantwhosemotherhasHELPPsyndromeandwhohasonlyaheartrateafteranemergencyC-section400gminfantat24-25weeks’gestationalageHeartrateonlyatbirthwith/withoutrespiratoryeffortPatientwithmulticystic/dysplastickidneysor(Downsyndrome)requiringECMOforpulmonaryhypoplasiaor(pulmonaryhypertension)1000gm,26weekgestationalageinfantonventilatorysupportfor7monthswithmultiplecomplicationsandparentsdesirecontinuedsupportFull-terminfantwithsevereperinataldistresswhoisstuporouswithseizuresandhypotension27weektwins,bothwithlargebilateralintraventricularhemorrhagesonday2ofageGuidelinesfromProfessionalSocietiesDefiningGestationalAgeRangeofQuestionableAggressiveObstetricaland/orNeonatalCareCountry

“GrayZone”(wk)

ReferenceCanada 23-25 CanMedAssocJ157:547, 1994(beingrevised)Netherlands 24-25 Lancet341:794,1987UK <26 BAPMMemorandum, July2000USA 23-25 TextbookofNeonatal Resuscitation,2000 Pediatrics110:1024,2002 ObstetGynecol100:617,2002LorenzJM.SeminPerinatol8:475,2003NICUGuidelinesinDeliveryRoomatUMMCNewbornInfantsattheLimitsofViability2004-05<23weeks

23-24(?)weeks

24(?),25-26weeksComfortcareResuscitationonlyiffamilywishesfullsupportafteroutcomesdiscussed;comfortcaremaybechosenResuscitationrecommended GestationalAge

(completedweeks)

RecommendedCareSurvivalRatesofLivebornNewbornInfantsinthe1990s—22-26weeks GestationalAge n Mean(%) Range(%) 22 186 13 0-21 23 521 30 7-46

24 1325 57 17-68(>50) 25 3297 79 53-82 26 1716 82 67-93LorenzJ.SeminPerinatol8:475,2003SurvivalRatebyDay

23Weeks

23Weeks

SurvivalRate 0-2days(n=NA) 0% 3-4days(n=10) 40% 5-6days(n-11) 64%McElrathTF.ContempOb/Gyn,August2002Amatterofdays:survivalvs.perishingLimitsofViability

SurvivalBetween23and25WeeksChanceofsurvivalincreasesanaverageof2%perdayfrom23weeks’to26weeks’gestationPercentageofsurvivorsdoublesforeachadditionalweekofgestationfrom24to27weeksApproximately50%surviveat23-25weeks,with50%havingadisability(the“50-50”rule)OverallDisabilityAt30MonthsForInfantsBornAt22-25WeeksGestationalAge

WoodNS,etal.NEJM343:378,2000n=314childrenNeurodevelopmentalDisabilityof241ExtremelyPrematureInfants(22-25weeks’gestation)at6YearsofAge—1995Overallseveredisability*:22%Severecognitiveimpairment:21%(41%comparedtoclassmates)Disablingcerebralpalsy(severe,moderate):12%Profoundhearingloss:3%;blindness:2%*Dependencyoncaregivers:IQ3SDbelowmean,profoundhearingloss,blindnessand/ornon-ambulatorycerebralpalsyMarlowN,etal.NEJM352:9,2005NeurodevelopmentalDisabilityof241ExtremelyPrematureInfants(22-25weeks’gestation)at6YearsofAge—1995Moderatedisability*:24%Nocognitive,neuromotordisability:20%Severedisabilityat30months:86%withsevereormoderatedisabilityat6years*Limitedindependence:IQ2SDbelowmean,needforhearingaid,impairedvisionand/orambulatorycerebralpalsyMarlowN,etal.NEJM352:9,2005WeareNOT

theplacentaWeneedtoconvinceourprofessionthatitsawesometechnicalpowercarrieswithitanequalresponsibilitytobehavereasonably…

FromSilvermanWA.Pediatrics98:1182,1996ExtremePrematurity—TheContinuingDilemmaVohrBR,AllenM.NEJM352:71,2005Weneedtoconvinceourprofessionthatitsawesometechnicalpowercarrieswithitanequalresponsibilitytobehavereasonably…

FromSilvermanWA.Pediatrics98:1182,1996TheLimitsofViability:DecisionTreeUnreasonableMandatory<23weeksGrayZone23-246/7wk&500-600gComfortcareonlyFullcriticalcare≥25weeksParentsindicatedefinitewishesfornon-activeintervention(Importanceofcounselingregardingimpactofinitialcondition/perinatalstresson

outcome)ParentsdesireactiveinterventionordefertomedicaljudgmentFollowparents’wishesunlessevidenceparentsnotworkinginbestinterestofthebabyExtentofactiveinterventionbasedonconditionandresponse-constantreevaluationNeonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivorsAmajorfrustrationanddifficultyinneonatal-perinatalmedicineistheinabilitytoaccuratelypredictanindividualinfant’sprognosisNeonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivors

Isitethicallyacceptabletowithholdtreatmentgiventhatcertaininfantsmaysurviveandenjoytheirlives?Roleofqualityoflifeindecisionmaking?PeerzadaJM,etal.JPediatr145:492,2004EthicalDecision-MakingintheDeliveryRoom/NICUConsiderationofWithdrawalTheoutcomeforaclinicalproblematthetimeofpresentationisuncertainTheteammustwaituntilenoughinformation(notfeelings)…enableacleardecisiononpossiblewithdrawalItissufficienttohaveareasonablebeliefthataparticularoutcomeislikelyandthatabsolutecertaintymaybeneitherpossiblenoralwaysnecessaryNeonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivorsNeonatologylacksthe“holygrail”wherebyanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivorsThegoalofNICUcareisNOTsurvivalalone,butsurvivalwithanacceptablequalityoflifeNeonatologylacksthe“holygrail”whereasanintervention/approachtocarewillimprovesurvivalanddecreasetheprevalenceofdisabilityamongsurvivors

DecisionsinthedeliveryroomaboutresuscitationandtreatmentofextremelylowbirthweightinfantsshouldneitherbethetriumphofhopeoverreasonnorthevictoryofegooveruncertaintyEthicsattheLimitsofViabilityFinerN,BaeringtonKJ.Pediatrics102:644,1998EthicsandtheNICUBalancingbenefitsandburdens(parents,physician,society)complicatedbySanctityvs.qualityoflifeInabilitytopredictoutcomewithclinicallyacceptableaccuracyDifficultyestimatingqualityoflifefrompatient’sperspectiveInterestsofparents(decisionmakers)andsocietyimportantEthicsandtheNICUIsprovidingaggressivecareattheedgeofviability:Worththeprolongedphysicalandpsychologicalsufferingoftheinfantandfamily?Worththeexpenditureoflimited,sharedsocietalresources?DecisionsDecisionsshouldbemadeinthepatient’sbestinterestswiththehealthcareteamDecisionsshouldbemadebythefamilywiththehealthcareteamDecisionsshouldbethoughtfullymadewiththebestpossibleinformationDecisionsshouldbereviewedtoensureadherencetotheprinciplesofnon-maleficence,autonomy,beneficence,justice/equityCareoftheExtremelyPrematureInfant—450-600Grams,22-24weeksLeadscare-givingteam,parentsintozoneofambiguityorthe“grayzone”Choiceoftenbetweengreaterandlessergoodsandharms-the“grayzone”-not“right”and“wrongPeopleofgoodfaithwillproceeddifferentlyingoodconscience,makingdifferentdecisionsImperfectOutcomesofNICUCareThreeFacts:SomefamiliesexperiencealifetimeoftragedyandsufferingwithprolongationoflifeMany“imperfectlives”havesignificantvalueAveryfewinfantsmaydiewhocouldhavesurvivedwithadditionalextensivecareandsomesuffering.WithdrawalofNeonatalLifeSupport—LimitationsofResuscitativeEffortsDecisions-parents,healthcareprofessionalsComplexStressfulTragicParentsandtheNICU

SourcesofStressMaternalillhealthSeparationfromherinfantStrange,“hostile”environment-ALIENenvironmentHigh-technoise,lightUnfamiliarstaffComplexmedicaldisorderstounderstandFowliePW,McHaffieH.BMJ329:1336,2004ParentsandtheNICU

SourcesofStressAppearance,conditionofinfant-tube