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Calhoun

Calhoun

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Published by: kdial40 on May 18, 2012
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Maternal-FetalMedicineObstetricsandGynecology
ROBERT
C.
BYRD
HEALTHSCIENCESCENTER
OFWESTVIRGINIAUNNERSI1Y
CharlestonDivision
TestimonyofByronC.Calhoun,MD,FACOG,FACS,MBAProfessorandViceChair,DepartmentofObstetricsandGynecologyWestVirginiaUniversity-CharlestonBeforetheSubcommitteeontheConstitution,CommitteeontheJudiciary,U.S.HouseofRepresentativesMay17,2012ChairmanFranksanddistinguishedmembersofthesubcommittee,IamByronC.Calhoun.IserveasaprofessorandasvicechairoftheDepartmentofObstetricsandGynecologyatWestVirginiaUniversity-Charleston.IampIeasedtohavethisopportunitytotestifyoncurrentissuesthatmayariseduringyourconsiderationoftheDistrictofColumbiaPain-CapableUnbornChildProtectionAct(H.R.3803).Asyouknow,thislegislationwouldprohibitabortionwithinthefederaljurisdictionthatitcovers,beginningat20weeksfetalage,whichis22weeksinthesystemofdatingthatiscommonlyemployedinobstetrics,whichcountspregnancyasbeginningatthetimeofthelastmenstrualperiod(the"LMP"system).Thebillcontainsanexceptionforcertaincasesinwhichanabortionisdeemednecessarybecauseofdangertothemother'slife.Objectionshavebeenraisedtothislegislationbysomewhosaythatabortionshouldbepermittedevenafter22weeksLMP(20weeksfetalage)becauseitisthenecessaryandappropriatewaytodealwithafetuswithsignificantphysicalanomaliesincludinglethalanomalies.Idonotagree.Thereareotheralternativesthatarefarmorehumaneforbothparentsandchild.Mytraining,asnotedinmybiography,involvesmaternal-fetalmedicine,whichisthecareofhighriskpregnancies.Thisincludesthecareofpregnancieswithlethalanomalies.Inmyalmost25yearsofpractice,Ihaveneverfounditnecessarytoterminateapregnancytosavethelifeofthemotherforafetalanomaly.Ihavehadtodeliverpatientsprematurelyandhadbabiesdiefromprematurity,butneverhadtotakethelifeofafetustosavethemother'slife.Inthecaseofafetalanomaly,weadvocatepatientsbeofferedtheoptionoftheperinatalhospice,whichistheprenataldiagnosisofaterminallyillfetusin-uteroleadingtoperinatalhospiceas~partofthecontinuumofend-of-lifecare.Priortothedevelopmentofperinatalhospice,thecounselingprovidedtoparentsfacingsuchadiagnosisgenerallyassumedabortionastheexpectedintervention,andofferednootheralternative.Therewerethewell-intentioneddesiresto"sparethemotherandfamily"adistressingexperience,aneedto"getitoverwith,"anobstetricalprovider'sneedto"dosomething"anddealwiththediscomfortofbereavedpatients,anill-informeddesiretoavoidcomplicationsofpregnancy,andanunsubstantiatedfearofincreasedmaternalmortality.
304-388-2375
0
800PennsylvaniaAvenue
0
Charleston.WV25302EqualOpportunity/AffirmativeActionInstitution
 
Researchingriefafterterminationofpregnancypaintsamuchdifferentlandscape.Early,smallstudiesprovidedaninitialglimpsethatterminationlosseswereasintenseasspontaneouslosses.Zeanah,etal,1993reportedacase-controlstudyof23individualsandfounda17%(4/23)depression rateand23%(5/23)seekingpsychiatriccounselingattwomonths.'Amorerecentstudyof253womenfrom2-7yearsafterterminationofpregnancyforfetalanomaliespriorto24weeksbyKorenrompetaI,2005foundthatpathologicgriefpersistedin3%ofpatients(2/253)andthat17% (33/253)sufferedfromsymptomsofposttraumaticstress.iFinally,KorenrompetaI,2009found persistentandsignificantgriefresponsesat4,8,and16months.'At4months46%ofwomenrevealed pathologiclevelsofposttraumaticstresssymptomsandat16months21%stillhadpathologiclevelsofposttraumaticstresssymptoms.'Incontrast,Janssenetal,1996publishedastudyof227womenwithfirsttrimesterlossescomparedtoacontrolgroupof213womenmatchedforlivebirths.
4
Thefirst6monthsshowedanincreasedlevelofdepression,anxiety,andsomatizationinthemiscarriagegroup,butbyoneyeartherewasnodifferencebetweenthe2groups."Withregardtothefearofincreasedmaternalmortality,themortalityrateswithinducedabortionfrom16-20weeksarequotedas9.31100,000livebirthsandtherateforpregnancyrelatedmortalityis101100,000livebirths.v"So,essentiallythemortalityratesarethesameforeitherofthemanagementchoices.WeutilizedtheseminalworkofKubler-Rossonmodernmedicine'sunderstandingofdeathanddyingtoassisttoshapeourconcept.'AtthesametimeKubler-Rosstransformedthediscussionsarounddeath,Saunderstransformedthecareofthedyingwithhermodernhospicemovement.
8
Theunifyingconceptinhospicewastheholisticapproachtothephysical,emotional,andspiritualsupport fordyingpatientsandtheirfamilies.Theessenceremainedtreatingthedyingwithdignityandasif theyreallywerealiveandnotyetdead.Thepatientandfamily'sfearofabandonmentcouldthenbemet.Thephilosophyofhospicehasspreadthroughouttheworld.Itscaremaybefoundinvariousforms,institutions,andhospiceinsomemannermaybefoundinalmosteverycommunitytoday.Perinatalhospicefamilieswhochoosetocarrytheirpregnanciesinwhichthefetushasalethalconditionpossessmanyofthesamecharacteristicsoffamilieswithaterminallyilladultorchild,aclinicalscenarioinwhichhospicehasbeenwellacceptedandausefulmethodofcare.Manyofthehospiceprinciplesweresuccessfullyappliedinperinatalhospice.Therewasanemphasisonaffirminglifebycareforthelovedonewhileregardingdyingasanormalprocess;aconsciousefforttoneitherhastendeathnorprolongdying;stressingvaluesbeyondthemerephysicalneedsofthedyingindividual;allowingtheparentsto"parent"theirchildforwhatevertimetheyareallowed,andsupportingthemedical,emotional,andspiritualneedsofthefamilythroughanorganizedmultidisciplinaryteamthatcaresforthefamilyafterthedeathofthelovedchildduringtheperiodofgrief.Thecareinperinatalhospicediffersinemphasis,nottypeofcarefromothermodesofperinatalcare.Itsprimaryfocusisonthefamilyandnotthefetaldiagnosis.Thefamilyisplacedinthecenterofthecareandthereisacontinuumofsupportfromthediagnosis,throughdeath,andgrief.Itagrees
j
withKnappetaI,that"dyinginvolvesrealpeople,evenunbornfetuses[andthat]significant relationshipsaredisruptedandfamiliarbondsaresevered".9Hospicepreservestimeforthebonding,loving,andloss;timeforparentstoadjusttothedyingprocess.AmyKuebelbeck,authorof
Waiting
with
Gabriel,1O
abookaboutherownexperiencewithhersonwhohadafatalformofhypoplasticleftheart,notes,"Iknowthatsomepeopleassumethatcontinuingapregnancywithababywhowilldieis
2
 
allfornothing.Butitisn'tallfornothing.Parentscanwaitwiththeirbaby,protecttheirbaby,andlovetheirbabyforaslongasthatbabyisabletolive.Theycangivethatbabyapeacefullife-andapeacefulgoodbye.That'snotnothing.Thatisagift."!'Oneofthemajorclinicalissuesinhospicecareremainsfear.Thepatientswhoaredyingfearabandonment,andinthesameway,theperinatalhospicefamiliesfearabandonmentandlossofrelationshipsduringthelossoftheirchild.Hospiceemphasizestheyareallowedto"parent"theirchildhowtheywouldliketodoso.Wediscussthesupportofandcareforthemduringtheirpregnancy,delivery,anddeathoftheirchild.Parentsalsofeartheirbabymighthavepain.Iftheydesirecomfortmeasuresfortheirbaby:oxygen,feeding,medications,painreliefifindicated,and wounddressings;theyareassuredthesewillbeprovided.Someparentswanttobeseenwhenotherpatientsarenotpresentandsomeparentswanttobewithotherpregnantwomen.Flexibilitytotheparents'wantsandschedulesiscriticaltothemanagementofthesepregnancies.Reductionoffeelingsofisolationandabandonment,throughmultidisciplinaryandeasyaccessibilitytothehospiceteam,are.themainstaysofperinatalhospicecare.Instructionisgiveninanticipatorygriefaswellaswaystorelatetootherchildreninthefamily,friends,andfamilymembers.Oftenthereremainsahopethatthediagnosisisincorrectandthattheirchildwillbethemiraclebabywhosomehowsurvives.Gentlesharingoftherealisticoutcomeofthepregnancyisbalancedwiththehopeforsimplifieddreamsfortheirbaby.Thegriefaccompanyingawantedchildintheperinatallossmaybemoreintensethanthosewithotherlosses.Thelackofphysicalcontactwith,andminimalamounttimewiththefetus,may preventconnectionwithinthefamilyandminimizethefeelingsofloss.Memoriesbuiltaroundthechildareimportantinthegrievingprocess.Frequentultrasoundsareprovidedoftheirbaby,and,otherfamilymembersareinvitedtoattend;particularlygrandparentsandsiblings,tocomeandseethebaby.Seeingthebabycementstherelationshipandbondwiththefamilyandthechild.Videotapesmaybe recordedforthefamilyastheonlylivingmemoriesoftheirchild.Deliveryplansarecoveredindetailwiththeparents.Itisespeciallynecessaryfortheparentstodesigntheirownbirthingplanincludingapossiblelivebirth.Thismayincludefetalmonitoring,whichweusuallydonotrecommend,unlesstheparentsagreetopossiblecesareandelivery.Cesareandeliverymaybeofferedintheeventtheparentswanttoseeandholdtheirlivingchild.Iftheparentsareadequatelycounseledregardingtheincreasedmaternalriskforcesareandelivery,wewillprovidethisservice.Diagnosisisvalidatedatdeliveryandthefamilyallowedtospendmaximumtimewiththeirchild.Thetimeallowsparentstocontributesomethingspecialtotheirchild'slifeandtoletfamilymembersholdtheinfantandevenperformitsfirst(andmaybeonly)bath.Theneonatalteammaycontinuehospicecareaswell.Wehavepublishedtwopreviouscaseseriesinperinatalhospiceindiversemedicalenvironments:amilitarymedicalcenterandacommunitybasedtertiarycaremedicalcenter.
12,13
Ourfirstseriespublishedin
2003
reviewourexperiencewithamilitarypopulationwherewediscussed
33
patientseligibleforperinatalhospicecare.Outofthe
33
patients,
28(85%)
chosehospicecare.
12
Wehada
61%
(17/28)
livebirthrate:
12
vaginaldeliverieswith4preterm
«
37
weeks)and
8
term;and
5
cesareandeliveries
(18%
or
5/28).12
Inoursubsequentpaperataciviliantertiarycarecenterwehad
28
patientseligibleforperinatalhospicewith
75%(21128)
choosinghospice.
13
Outofour
21
patients
3

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