Andersons pediatric cardiology 273
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withthephysician'srepeatedmentionofterminationafterparentsstatedthey
declinedtoterminate.25Thisstudyalsofoundthatparentssoughtsecond
opinionsiftheyviewedthephysicianasnotbeingknowledgeableonthe
diagnosis,ornotcompassionate.InonestudybasedintheUnitedStates,the
majorityofthosewhosoughtsecondopinionscontinuedcarewiththesecond
cardiologist.26Itisimportanttobeawareoftheseissuesandtoclarifythe
parents’comprehensionregularlyduringacounselingsessioninordertoavoid
misunderstandings.Couplesshouldbegivennondirectivecounselinginorderto
makethebestdecisionfortheiruniquesocial,cultural,andreligioussituations.
CounselorSelf-AwarenessIsRequiredto
LimitBias
Evidencesuggeststhatcounselorsdonotprovideunbiasedinformation—Konet
al.foundthatphysicianrecommendationsforhypoplasticleftheartsyndrome
(HLHS)managementwerebasedonwhatthephysicians’affiliatedhospital
provided,eveniftheybelievedthathighersurvivalrateswouldbeachievedwith
adifferentprocedure.39Physiciansmustalsobeawareofthe
surgical/interventionaloutcomesintheirowncenterandresultsandalternative
treatmentstrategiesavailableinothercentersaccessibletothepatientand
openlyprovidethisinformationtoparents.
Theexperienceofthecounselormaybiashowinformationispresented.Kon
etal.foundthatsurgeons,intensivists,andcardiologistsaremorelikelyto
recommendsurgicaloptionsovercomfortcarecomparedwithneonatologistsat
thesamefacility.39Theteamapproachtocounselingmaybemorebalancedthan
counselingbyasingleindividual.
Itisimportantthatthecounselorisawarethattheparentmayhavevery
differentviewstohim/her,includingreligion,background,education,andfamily
circumstances,amongotherfactorsthatwillinfluencedecisionmaking.Aryaet
al.foundthat54%ofparentsopposedterminationforreligiousormoralreasons,
whileonly2%ofphysiciansopposedterminationforthesamereasons.19Almost
halfofphysiciansandnursessurveyedstatedtheywouldterminatethe
pregnancyiftheirchildwasprenatallydiagnosedwithHLHS.40,41These
predictionsofterminationbymedicalpersonnelarehigherthanthepublished
terminationratesforHLHS.42,43Thephysician'spersonalopinionofpregnancy
terminationandwhethertheythinktheywouldchooseterminationofpregnancy
ifinasimilarsituationarehypothetical,relatedtotheirpersonalcircumstances,
andcannotbeextrapolatedtoorbeallowedtoinfluencethecouplebeing
counseled.Conversely,ifaphysicianisnotcomfortablewithcounseling
regardingterminationformajorCHD,he/shemightarrangeforsuchcounseling
byanother.Acknowledgingparents’autonomycanmakecouplesfeelthattheir
opinionsanddecisionsarebeingrespectedandallowfortrueinformedconsent.
Physiciansmustalsobeawareoftheirownviewsregarding
neurodevelopmentaldelay(NDD)forpatientswithCHD.Inaninternational
studyofphysicians,Paladinietal.foundthatapproximatelyhalfofphysicians
discussedtheassociationofNDDandCHDwithparentsregardlessofthetype
ofCHD,while32%discussedthisassociationinselectedcases.44Themajority
ofrespondentswereawareoftheassociationbetweenNDDandCHD;however,
therewasalargegeographicdifferenceinphysicians’prenatalcounseling.In
NorthAmerica,92%ofphysiciansreporteddiscussingtheriskofNDD
regardlessofthetypeofCHD,while42%ofphysiciansinEurope,and22%in
Asiadidthesame.TheauthorsnotethatitisofinterestthatdespitetheNorth
AmericanphysiciansreportingdiscussingNDDmuchmorefrequently,the
terminationofpregnancyratesinthatgeographicregionaresignificantlylower
thaninEuropeandAsia.
