Andersons pediatric cardiology 274
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SupportingFamilies—Practical
Considerations
Physiciansmusthaveanawarenessofthedownfallsoffetalechocardiography
includingwhichassociatedlesionscanbemissedoroverdiagnosedandwhatthe
likelihoodisofapostnatalchangeinthediagnosisthatwouldhavemajor
implicationsforoutcomeormanagementstrategy.
Physiciansgivingcounselingmusthaveanunderstandingthattheoutcomes
forafetaldiagnosiscannotbeextrapolatedfromsurgicalseriesorpostnatal
experience.45FetalCHDgenerallyhasworseoutcomesthanpostnatalor
surgicalseries,astherearehigherratesofextracardiacandchromosomal
anomalies,someconditionsareassociatedwithintrauterinedeath,andpostnatal
seriesoftenhavelowerascertainmentofcasesthatdiedbeforetransfertoa
cardiaccenterorinwhompalliativecarewaschosen.46Furthermore,fetalCHD
mayprogress,andthepotentialforprogressionshouldbeconsideredand
discussedespeciallyifitimportantlychangestheprenatalandpostnataloutcome
andmanagementoptions.
Counselorsshouldbeexperiencedinunderstandingtheuniqueaspectsof
prenatalcounseling,includingtheimplicationsofmultiplepregnancieson
parentaloptionsforterminationofpregnancy,includingtheoptionofselective
termination,deliverytypeandtiming,andtherisktotheco-twin(e.g.,
monochorionictwinpregnancies)inthesettingofintrauterinedeathofafetus
withCHDorwherethereisaneedforearlierdelivery.Theyshouldbeawareof
thelawregardingoptionsforandtimingofterminationofpregnancyinthe
regionwheretheypractice.
PriortotheFetalEcho
Screeningobstetricpersonnelshouldbeencouragedtomakepromptreferrals
whenasuspicionofCHDhasbeenidentifiedonfetalultrasoundscreening.Itis
importanttoexpediteappointmentsforfetalechocardiographywhenthese
referralsaremade.Thiswilllimittheperiodofanxiousuncertaintyfacedby
parentsfollowingreferral,allowmoretimeforothertestingandtoconsider
terminationofpregnancy,andtoprepareandplanadequatelyforthedeliveryof
ababywithCHD.ReferringphysiciansshouldinformtheparentsthatCHDis
suspected—thisenablesmoreeffectivecounseling,asthepatientisbetter
preparedtoreceivebadnews.Referringphysiciansshouldrefrainfromdetailing
anexactdiagnosisunlessthereisahighdegreeofcertainty.
Priortoperformingafetalechocardiogram,thepatientshouldreceivean
explanationofthepurposeofthescanandthatthescanwilllikelyberelatively
lengthy,withafullexplanationofthefindingstobeexpectedattheendofthe
study.
RecommendedCounselingStyle
Counselorsshoulddeliverinformationinanempatheticandcaringmanner.They
shouldtakecuesfromparentsaboutthelevelofinformationtheyrequire.
Parentswhofeelrusheddonotgenerallyfeelthattheirphysicianisshowing
compassion.Physiciansshouldallowtimetodigesttheinformation,makeuseof
silenceandpauses,allowbreakstotakeplaceasrequired,encouragecouplesto
askquestions,andtoensurethecouplehavedevelopedafullunderstanding
beforemakingimportantdecisionsaboutthepregnancyorpostnatal
managementstrategy.Itisimportanttoacknowledgetheemotionalstressthe
coupleisexperiencingandtheemotionstheyarefeeling.Phrasessuchas“I
knowthisishard”and“Iknowthisisn'twhatyouexpected”helpacknowledge
whattheparentisgoingthroughandmakesthemfeellistenedtoandunderstood.
Itisimportantthattheinformationgivenisunderstandable;medicaljargon
shouldbeavoidedandthepathologyandoutcomesexplainedinlayman'sterms.
Repetitionisanimportanttooltoaidparentunderstanding.Theparentsshould
beencouragedtoexpresstheirfears.Wherepossible,appropriatehopeshouldbe
offered.Ifthereareuncertaintiesinthediagnosisorexpectedoutcome,these
shouldbehonestlydiscussed.Counselingshouldbenondirectiveanda
paternalisticapproachshouldbeavoided.Counselorsshouldrecognizetheirown
biasesandaimtotemperthemasmuchaspossible.Itisimportantforcouplesto
understandthatwhateverdecisiontheymake;theyhavethesupportofthecare
team.Thecounselorshouldaimtotailorthecontentofthediscussionaccording
totheindividualpatient,takingaccountoftheirlevelofeducation,
socioeconomicandculturalstatus,aswellastheirpersonalconvictionsand
beliefs.However,makingassumptionsregardingwhatacouplewouldorwould
notacceptorconsiderbasedonsocioeconomicstatus,ethnicity,andreligions
shouldalsobeavoided.
InitialCounselingSession
Ideally,counselingshouldbeperformedbybothatrainedfetalcardiologistand
alsoafetalmedicinespecialist.Itisveryhelpfultohaveanursecoordinatoror
midwifepresenttoprovidesupportforthepatient,bothduringtheconsultation
andfollowing.Patientsshouldbeencouragedtobringalongtheirpartnerand/or
afriendorrelative.
Counselingshouldtakeplaceinaseparateroomfromtheultrasoundmachine
andexamtable.Itiscrucialthatthereisadequatetimeavailabletodeliverthe
necessaryinformationandinterruptionsshouldbediscouraged.Supportive
material,suchasdiagramsshowingtheheartcondition,heartmodels,and
literatureontheconditionspecificallydesignedforparentsareextremely
helpful.Emotionalresponsesaretobeexpectedanditissensibletobeprepared
withasupplyoftissues.Iftheparentsarenotfluentinthelanguageusedfor
counseling,thenitiscrucialtoofferaninterpretertofacilitateparent
understanding.
Inourexperience,theofferoffollow-upappointmentsandprovisionofpoints
ofcontactforsubsequentquestionsalsohelpparentstofeeladequatelyinformed
andsupportedinunderstandingtheirbaby'scondition.
