Pediatric Ethics: Theory and Practice PDF
Preview Pediatric Ethics: Theory and Practice
The International Library of Bioethics 89 Nico Nortjé Johan C. Bester Editors Pediatric Ethics: Theory and Practice The International Library of Bioethics FoundingEditors DavidC.Thomasma DavidN.Weisstub ThomasineKimbroughKushner Volume 89 SeriesEditor DennisR.Cooley,NorthDakotaStateUniversity,History,Philosophy,&Religious Studies,Fargo,ND,USA AdvisoryEditor DavidN.Weisstub,FacultyofMedicine,UniversityofMontreal,Montréal,QC, Canada EditorialBoard TerryCarney,FacultyofLawBuilding,UniversityofSydney,Sydney,Australia MarcusDüwell,PhilosophyFacultyofHumanities,UniversiteitUtrecht,Utrecht, Utrecht,TheNetherlands SørenHolm,CentreforSocialEthicsandPolicy,TheUniversityofManchester, Manchester,UK GerritKimsma,RadboudUMC,Nijmegen,Gelderland,TheNetherlands DanielP.Sulmasy,EdmundD.PellegrinoCenterforClinical,Washington,DC, USA DavidAugustinHodge,NationalCenterforBioethics,TuskegeeUniversity, TuskegeeInstitute,AL,USA NoraL.Jones,CenterforUrbanBioethics,TempleUniversity,Philadelphia,USA TheInternationalLibraryofBioethics–formerlyknownastheInternationalLibrary of Ethics, Law and the New Medicine comprises volumes with an international and interdisciplinary focus on foundational and applied issues in bioethics. With this renewal of a successful series we aim to meet the challenge of our time: how to direct biotechnology to human and other living things’ ends, how to deal with changedvaluesintheareasofreligion,society,andculture,andhowtoformulatea newwayofthinking,anewbioethics. TheInternationalLibraryofBioethicsfocusesontheroleofbioethicsagainstthe backgroundofincreasingglobalizationandinterdependencyoftheworld’scultures and governments, with mutual influencing occurring throughout the world in all fields.Theserieswillcontinuetofocusonperennialissuesofaging,mentalhealth, preventivemedicine,medicalresearchissues,endoflife,biolaw,andotherareasof bioethics,whilstexpandingintoothercurrentandfuturetopics. Wewelcomebookproposalsrepresentingthebroadinterestofthisseries’inter- disciplinaryandinternationalfocus.Weespeciallyencourageproposalsaddressing aspectsofchangesinbiologicalandmedicalresearchandclinicalhealthcare,health policy,medicalandbiotechnology,andotherappliedethicalareasinvolvingliving things, with an emphasis on those interventions and alterations that force us to re-examinefoundationalissues. Moreinformationaboutthisseriesathttps://link.springer.com/bookseries/16538 · Nico Nortjé Johan C. Bester Editors Pediatric Ethics: Theory and Practice Editors NicoNortjé JohanC.Bester TheUniversityofTexasMDAnderson UNLVSchoolofMedicine CancerCenter UniversityofNevada,LasVegas Houston,TX,USA LasVegas,NV,USA ISSN2662-9186 ISSN2662-9194 (electronic) TheInternationalLibraryofBioethics ISBN978-3-030-86181-0 ISBN978-3-030-86182-7 (eBook) https://doi.org/10.1007/978-3-030-86182-7 ©SpringerNatureSwitzerlandAG2022 Thisworkissubjecttocopyright.AllrightsarereservedbythePublisher,whetherthewholeorpartof thematerialisconcerned,specificallytherightsoftranslation,reprinting,reuseofillustrations,recitation, broadcasting,reproductiononmicrofilmsorinanyotherphysicalway,andtransmissionorinformation storageandretrieval,electronicadaptation,computersoftware,orbysimilarordissimilarmethodology nowknownorhereafterdeveloped. Theuseofgeneraldescriptivenames,registerednames,trademarks,servicemarks,etc.inthispublication doesnotimply,evenintheabsenceofaspecificstatement,thatsuchnamesareexemptfromtherelevant protectivelawsandregulationsandthereforefreeforgeneraluse. Thepublisher,theauthorsandtheeditorsaresafetoassumethattheadviceandinformationinthisbook arebelievedtobetrueandaccurateatthedateofpublication.Neitherthepublishernortheauthorsor theeditorsgiveawarranty,expressedorimplied,withrespecttothematerialcontainedhereinorforany errorsoromissionsthatmayhavebeenmade.Thepublisherremainsneutralwithregardtojurisdictional claimsinpublishedmapsandinstitutionalaffiliations. ThisSpringerimprintispublishedbytheregisteredcompanySpringerNatureSwitzerlandAG Theregisteredcompanyaddressis:Gewerbestrasse11,6330Cham,Switzerland Preface Dearreader, Itisoftensaidinpediatricsthatchildrenarenotjustlittleadults.Whenthisissaid, themeaningisthatchildrenarephysiologicallyanddevelopmentallydifferentthan adults, get different kinds of diseases, and respond differently to medications and treatments.Onecannotjustapplyconceptsapplicableinadultmedicinedirectlytothe treatmentofchildren;childrenrequirespecialtreatmentsandspecialconsiderations. Thesamecanbesaidforpediatricethics.Childrenarenotjustlittleadults,andwe cannotapproachethicalissuesthataffectthecareofchildrenbymerelyextrapolating fromadultmedicine.Childrenareunique.Theyarevulnerable,dependentonothers fortheirwellbeing.Childrenareinastateofdevelopmentandrequireavarietyof thingstobeinplacetosecureadequatedevelopmentandflourishing.Childrenlack the capacity to make their own decisions and to advocate for their own interests. Theparent-childrelationshipisimportanttochildrenandtosociety.Thesevarious factorsmeanthatchildrenareuniquelysituatedandthattheethicalissuesthatarise inpediatricmedicinearethereforeunique. Asanindependentacademicandclinicalfieldofinquiry,bioethicsisstillrelatively young.Thepioneersofbioethicslaidthefoundationsofthefieldinthe1970sand onwardsandwereinitiallyveryconcernedabouttheimplicationsoftheconceptof autonomy for health care. For the first few decades of its existence, bioethics was laserfocusedontopicsrelatedtoinformedconsent,respectforautonomy,thetension betweenautonomyandbeneficence,andthelike.Thesearealltopicsrelatedtoadult medicineandassumeafreelychoosingadultpatientasthefocusofethicalreflection. Theworkonquestionssurroundingautonomycontinueswithinbioethics,butover thepast25yearstherehasbeenagradualrecognitionthatethicalissuesinpediatrics requirefocusedattentioninitsownright.Scholarsandpediatriciansrecognizedthat the4-principlemodeldoesnotfitdirectlyintopediatricpracticelikeitdoesinadult medicine, and we cannot simply extrapolate from ethical issues in adult medicine tofindsolutionsforethicalquestionsinpediatricmedicine.Gradually,asmoreand more work were published that focused on ethical issues in pediatrics, the field of pediatricethicsasaspecializedareaoffocusdeveloped.Andasthisfieldcontinues v vi Preface todevelop,itisclearthattheethicalquestions,frameworks,andsolutionsrelevant topediatricmedicalpracticeareuniqueaschildrenareunique. Thechallengeforscholarsofpediatricethicsissimilartothechallengefacedby bioethicistsworkinginotherfocusareas.Theethicalissuesraisedinpediatricsare complex;workingthroughthemrequiressophisticatedknowledgeandskill.Thus, the need for experts in pediatric ethics. At the same time, ethical issues arise in everyday pediatric practice, in the frontlines where parents and clinicians actually have to make decisions and provide care for children. Thus, the need for pediatric ethicstobeaccessibleandstraight-forwardenoughthatitcanbeappliedineveryday practice. This is perhaps one of the most serious challenges confronting the field ofbioethics:weneedtohavespecializedknowledgeandskillswhilebeingableto yieldinsightsandframeworksrelevanttothegeneralpublicandpractitioner.Itisno goodtoliveinanacademicivorytowerwhereallthesewonderfulideasarebandied aboutifitdoesnotaffectthepracticeofmedicine.Atthesametime,itisnogoodto diluteethicalreasoningandanalysistothepointwhereimportantethicalcontentis overlookedtodowhatiseasyorexpedient.Goodethicsworkisofhighacademic qualityandrigorwhilebeingaccessibleandpracticaltoageneralaudience. Itiswiththisinmindthatweembarkedontheprojectofcompilingthistextbook. Ourgoalistopresentethicalreasoningandanalysisthathavereal-worldimplications forthemedicalcareofchildren.Thisbookwrestleswithseriousandcomplexethical questions,applyingrigorandskilledanalysistovariousproblemareas.Butitdoes so with the practice of medicine in mind, seeking to translate ethical debates into practicalguidanceforuseinpractice.Thehopeisthatthisbookwillprovidetheory thatcanguidepractice,substancethatwillbeofuseforpediatricians,nurses,ethicists, andpolicymakers. Thefirstsectionofthebookisdevotedtotheory.Chaptersinthissectionexamine variousethicaltheoriesandapproachesprominentinpediatricethics.Thisincludes an overview of the best interest standard and the recent debate (particularly in the academiaintheUnitedStates)aboutthebestintereststandard.Itincludeschapters ontherighttoanopenfuture,ontheUNConventionontheRightsoftheChild,and ontheethicalimplicationsofdifferentstagesofchildhooddevelopment.Thesecond sectionofthebookisdevotedtotheimplicationsofethicaltheoryandreasoningto specific questions in pediatric practice. The firstfocus area is about how we make decisionsforchildren,thesecondaboutcriticallyillchildreninICUorinEmergency Rooms,thethirdaboutnewandcontroversialissuesinpediatricethics,andthefourth aboutsociety’sobligationstochildren.Ineachofthesefocusareaschaptersaddress questionsthatarisefrequentlyinpediatricpracticeandinpolicymakingallaround theworld. Thisbookisaninternationaltextbook.Thetemptationisalways,whenwritingan ethicsbookmeanttoprovidepracticalguidance,tofocusovertlyonthelawsandlegal precedentsofaspecificjurisdictionofpractice.Whilethisisaworthwhileendeavor, thechallengeistoilluminateethicalreasoninginsteadofmerelyprovidingguidance linkedtothelawsofaspecificstateorcountry.Thisisimportantbecausesomeissues ariseeverywhere,areuniversal,andrequireethicalreasoningforitsresolution.Our veryfirstchapterillustratesthispoint.Thischaptercapturescontributionsfromall Preface vii overtheworld,whereethicistsdescribethemostpressingethicalissuesinpediatrics fromdifferentpartsoftheworld.Therearedifferencesbetweencountriesandconti- nents,sure.Butwhatemergesclearlyisthesimilarityoftheissuesandchallenges faced in various countries; how similar the questions are in different parts of the world,andhowimportantitistohaveaglobaldialogueontheimplicationsofthese issuesforpractice.Thisbookhasthereforebeenwrittenbyauthorsfromalloverthe worldandismeantforanaudienceallovertheworld. Itisourhopeandwishthatthisbookwillaidyouinyourpracticeofpediatrics, inyourmakingofpolicy,orinyourscholarlyandacademicwork.Whereveryour worktouchesthelivesofchildren,wehopethisbookwillhelpyou.Ultimately,itis ourgoalthattheinterestsofchildrenareadvancedandprotected,andthatthiswill leadtomorepeaceful,just,andwell-offsocietiesallovertheworld. Sincerelyandwithbestwishes. LasVegas,USA JohanC.Bester Houston,USA NicoNortjé Contents PartI Theory 1 The Main Challenges in Pediatric Ethics from Around theGlobe ..................................................... 3 N.Nortjé,M.Kruger,J.B.Nie,S.Takahashi,Y.Nakagama, R.Hain,D.Garros,A.M.R.Villalva,J.D.Lantos,J.P.Winters, andT.-L.McCleary 2 ADevelopmentalPerspectiveonPediatricDecision-Making Capacity ..................................................... 23 N.HardyandN.Nortjé 3 The Child’s Right to an Open Future: Philosophical FoundationsandBioethicalApplications ........................ 39 J.R.Garrett 4 TheBestInterestStandardandItsRivals:TheDebateAbout EthicalDecision-MakingStandardsinPediatrics ................. 57 J.C.Bester 5 TwoEthicalFoundationsforPediatrics:TheUnitedNations’ ConventionontheRightsoftheChildandBioethicalPrinciples ... 79 J.P.Spike 6 A Contextual Architecture of Praxis in Pediatric Case Consultation .................................................. 93 C.M.NelsonandR.Posen PartII Practice 7 Parental Permission, Childhood Assent, and Shared Decision-Making .............................................. 111 S.L.TetiandT.M.Silber ix x Contents 8 Telling the Child: Ethics of the Involvement of Minors inHealthCareDecision-MakingandinConsideringParental RequeststoWithholdInformationfromTheirChild ............. 127 J.M.MarronandK.O.Kennedy 9 Parental Refusal of Beneficial Treatments for Children: EthicalConsiderationsandtheClinician’sResponse .............. 143 J.C.Bester 10 CaringforAdolescents:UniqueEthicalConsiderations ........... 155 S.BaroneandY.Unguru 11 Demands for Harmful Treatments in Pediatrics andtheChallengeofReasonablePluralism:AQuasi-Clinical EthicsConsultation ........................................... 171 G.BirchleyandD.M.Hester 12 Family or Community Belief, Culture, and Religion: ImplicationsforHealthCare ................................... 187 T.Rossouw,P.Foster,andM.Kruger 13 ChildrenRequiringEmergencyHealthCare ..................... 203 I.MitchellandJ.Guichon 14 EthicalIssuesandConsiderationsforChildrenwithCritical CareNeeds ................................................... 225 B.M.MorrowandW.Morrison 15 EndofLife:Resuscitation,FluidsandFeeding,and‘Palliative Sedation’ ..................................................... 239 R.HainandF.Craig 16 Medical Futility in Pediatrics: Goal-Dissonance andProportionality ........................................... 253 I.D.WolfeandA.A.Kon 17 NewbornswithSevereDisabilityorImpairment ................. 275 M.DevereauxandK.L.Marc-Aurele 18 NeonatalEuthanasiaandtheGroningenProtocol ................ 291 JacobJ.Kon,A.A.EduardVerhagen,andAlexanderA.Kon 19 GeneticTestingandScreeningofChildren ....................... 313 M.B.MenzelandV.N.Madrigal 20 EnhancementTechnologiesandChildren ........................ 329 J.T.Eberl 21 PredictingChildhoodNeurologicImpairments:Preparing fororPrejudicingtheFuture? .................................. 343 P.C.Mann
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