TRANSFORMING CONSENT IN MATERNITY CARE Reportofthe11/10/17Birthrightsseminar,hostedbyGreenTempletonCollegeOxfordaspartoftheSheilaKitzingerProgramme

Background Foundedin2013,thehumanrightsinchildbirthcharityBirthrightsisledbyaboardofmidwives,doctors,lawyersandserviceusersunitedbythebeliefthatallwomenareentitledtorespectfulmaternitycarethatprotectstheirfundamentalrightstodignity,autonomy,privacyandequality.Pregnancyandchildbirthareacriticaltimeforwomenandtheirfamilies.Theirexperienceofmaternitycarecanempowerandprotectorcausedamageandtrauma. Maternity careengagesfundamentalhumanrightsandprovides auniqueopportunitytoengagewithfamiliesfromallbackgroundsto ensurenotonlyphysical andemotionalsafety duringpregnancyandbirth,but alsooffertheoptimal start toparenting andchildhood.  Manywomendonotreceiverespectfulcareorchoiceinchildbirthbutthoseexperiencingseveredisadvantagewillsufferdisproportionately.Womeninthisgrouparelesslikelytoaccessmaternitycare(andreceivelessmaternitycareoverall),havepoorermaternalandinfantoutcomesandaremorelikelytoexperienceperinatalmentalhealthproblems.Weuseourlegalandhealthcareexpertiseto:• Tackleinjusticeonthefrontlineandempowerthevulnerable:providingfreeadviceto

individualwomen,familiesandhealthcareprofessionalsonsafe,quality,respectfulmaternitycare

• Shareknowledgeandupliftfrontlinework:providinghealthcareprofessionals(particularlymidwivesanddoctors),frontlinevoluntarysectororganisationsandvulnerablecommunitieswithtailoredhumanrightstraining,resourcesandtools

• Discoverthebarrierstochangeandshinealightonhiddenissues:commissioningresearchandworkingcollaborativelytoimproveoutcomes,particularlyforthemostdisadvantagedwomenthroughthedevelopmentofdeeppartnershipswithorganisationsworkingwithtargetedgroups

• Changeculture,influencingpracticeandbringingthevoicesofindividualstodecision-makers:prioritisingfar-reachingpolicywork,oftencollaborative,tobuildlocalandnationalsystemsonafoundationofrespect,justiceandadesireforbroaderchange

The Montgomery v Lanarkshire Judgment InMarch2015UKSupremeCourtpowerfullyaffirmedwomen’srighttoautonomyinchildbirthinthecaseofMontgomeryvLanarkshireHealthBoard.AllowingtheappealfromtheScottishcourtsbyawomanwhosebabysufferedshoulderdystociainlabour,theSupremeCourtheldthatwomenhavearighttoinformationabout‘anymaterialrisk‘inordertomakeautonomousdecisionsabouthowtogivebirth.MrsMontgomery,apregnantdiabeticwomanwithalargebaby,wasnotinformedbyherobstetricianofthechanceofshoulderdystocia.Althoughshehadrepeatedlyexpressedconcernsaboutgivingbirthvaginally,theobstetriciansaidthatsheroutinelychosenottoexplaintheriskofshoulderdystociatodiabeticwomenbecausetheriskofseriousinjurytothebabywasverysmallandthatifshedidexplainit,‘theneveryonewouldaskforacaesareansection‘.Fordiabeticwomen,theriskoftheoccurrenceofshoulderdystociaisabout9-10%andtheconsequentriskofseriousinjurytothebabyislessthan1%.However,shoulderdystociaposesavarietyofseriousriskstothewoman’shealth,includingpost-partumhemorrhage(11%)and4thdegreeperinealtear(3.8%).Thedoctorapparentlydidnotconsiderthattheseriskswereworthexplainingtowomen.Thedoctor’sassumptionsclearlydisturbedtheCourt.AsLadyHalesaid(para111):‘Inthisdayandage,wearenotonlyconcernedaboutriskstothebaby.Weareequally,ifnotmore,concernedaboutriskstothemother.Andthoseincludetherisksassociatedwithgivingbirth,aswellasanyafter-effects.Oneoftheproblemsinthiscasewasthatfortoolongthefocuswasontheriskstothebaby,withoutalsotakingintoaccountwhatthemothermightfaceintheprocessofgivingbirth.’SupremeCourtJusticeBrendaHale:‘Gonearethedayswhenitwasthoughtthat,onbecomingpregnant,awomanlost,notonlyhercapacity,butalsoherrighttoactasagenuinelyautonomoushumanbeing.’The law Fromalegalperspective,thedecisionbringsEnglishandScottishlawintolinewiththatoftheUnitedStatesandothercommonlawjurisdictionsbyseparatingthequestionofinformedconsentfromthetraditionaltestforclinicalnegligence.TheCourtexpressedthelegaldutyondoctorsasfollows(para87):‘Anadultpersonofsoundmindisentitledtodecidewhich,ifany,oftheavailableformsoftreatmenttoundergo,andherconsentmustbeobtainedbeforetreatmentinterferingwithherbodilyintegrityisundertaken.Thedoctoristhereforeunderadutytotakereasonablecaretoensurethatthepatientisawareofanymaterialrisksinvolvedinanyrecommendedtreatment,andofanyreasonablealternativeorvarianttreatments.Thetestofmaterialityiswhether,inthecircumstancesoftheparticularcase,areasonablepersoninthepatient’spositionwouldbelikelytoattachsignificancetotherisk,orthedoctorisorshouldreasonablybeawarethattheparticularpatientwouldbelikelytoattachsignificancetoit.’Itisthereforenolongerappropriatetoassesstheadequacyofthedoctor’sinformationsharingbyreferencetothestandardsofareasonablemedicalprofessional;insteadtherelevantstandardiswhetherthepatientwouldattachsignificancetotherisk.Initsexplicitrecognitionofpatients’rightstoautonomyandinformedchoice,Montgomeryhammersthefinalnailinthecoffinofmedicalpaternalism.

What are the implications for healthcare professionals? Doctorswillalreadybewell-acquaintedwiththeGMCguidanceonconsent,whichwasquotedwithapprovalinMontgomery,andthecaseisareminderoftheimportanceofthisguidance.TheCourthighlightedthefollowingaspectsoftheprocessofinformedconsentthatallhealthcareprofessionals(andhospitalmanagers)shouldtakeonboard:(i) Dialogue:inorderforapatienttomakeaninformeddecision,theremustbeaconversation

betweendoctorandpatient.Thedoctormust‘ensurethatthepatientunderstandstheseriousnessofhercondition,andtheanticipatedbenefitsandrisksoftheproposedtreatmentandanyreasonablealternatives,sothatsheistheninapositiontomakeaninformeddecision.’Theinformationcannotflowonewayandthedoctor’sadvicemustbe‘sensitivetothecharacteristicsofthepatient‘(Montgomery,para89).Hospitalscannotrelyonprintedinformationleafletstoprovideinformation;thereshouldalwaysbeapersonaldiscussion.

(ii) Materialrisks:amaterialriskisonetowhichareasonablepatientwouldattach

significance.Statisticsalonewillnotdeterminewhetherariskissignificantforaparticularpatient.Forexample,theriskofcomplicationsforfuturepregnanciesafterac-sectionmightbestatisticallysmall,butitwouldbemoresignificantforawomanwhowishedtohavemultiplechildrenthanforawomanwhodidnot.

(iii) Consentforms:theCourtemphasisedthatthedoctor’sobligationwillonlybedischargedif

theinformationisimpartedinawaythatthepatientcanunderstand.‘Thedoctor’sdutyisnotthereforefulfilledbybombardingthepatientwithtechnicalinformationwhichshecannotreasonablybeexpectedtograsp,letalonebyroutinelydemandinghersignatureonaconsentform‘(Montgomery,para90).Thisisimportantguidance.Hospitalscannotrelysimplyonacompletedconsentformasevidencethataclinicianhasfullyappraisedapatientoftherisksofaprocedure.

More litigation? Maternitycareisalreadyinfamouslylitigiousandaccountsfornearly50%ofthevalueofallNHSnegligenceclaims(seeNHSLitigationAuthority,’10YearsofMaternityClaims’).TheSupremeCourtrecognisedthatthereisariskthattheMontgomerydecisionwillincreaselitigationbywomenwhoclaimthattheywerenotadequatelyinformedofrisks.TheCourtgaveaninterestingresponsetothis(para93):‘…insofarasthelawcontributestotheincidenceoflitigation,anapproachwhichresultsinpatientsbeingawarethattheoutcomeoftreatmentisuncertainandpotentiallydangerous,andintheirtakingresponsibilityfortheultimatechoicetoundergothattreatment,maybelesslikelytoencouragerecriminationsandlitigation,intheeventofanadverseoutcome,thananapproachwhichrequirespatientstorelyontheirdoctorstodeterminewhetherariskinherentinaparticularformoftreatmentshouldbeincurred.’Farfromthreateningdoctorswithmoreclaims,properdisclosureofrisksshouldprotectthemedicalprofessionfromlitigationandleadtopatientsbearingresponsibilityfortheirowndecisions.Respectforpatientautonomymeansthatpatientstakeresponsibility.

11 October Sheila Kitzinger Programme Seminar On11October2017Birthrightsheldaday-longseminartobringtogetherasmallgroupofleadersinlawandhealthcaretoproactivelyshapetheimplementationofMontgomeryvLanarkshireintheUK.TheeventwashostedbyGreenTempletonCollegeOxfordaspartoftheSheilaKitzingerProgramme,whichhonoursthelife,andbuildsonthework,ofthesocialanthropologistSheilaKitzinger(1929-2015).TheMontgomerydecisionhasprofoundimplicationsforclinicalpracticearoundchoiceandconsent.IftheCourt’sjudgmentistobeupheld,professionalcarersmustbegiventhetimetodiscusschoiceswithwomenintheircareandmustrespectthedecisionsthatwomenchoosetomake.Professionalbodies,academics,lawyers,policy-makersandfrontlinepractitionersarerespondingtothejudgmentinanumberofways.Duringtheseminarwesharedunderstandingandideasandbuiltacomprehensivepictureofthechangesthataretakingplacetodevelopamaternityculturethatenableslawfulconsent.ThegroupaffirmedthattheMontgomeryjudgmentwasreflectiveofestablishedbestpracticeandreflectiveofthestandardsofcarethatmaternityprofessionalsshouldbemeeting.Thejudgment’sforegroundingofpersonalised,two-wayconversationsisalsoconcurrentwithwhattheevidencebaseaffirmsthatwomenwantfromtheirmaternitycareanddovetailswiththeneedforcontinuityofcarer.WeheardfromElizabethProchaska,ChairofBirthrights,abouttheimplicationsofMontgomeryandSuzanneWhitefromlawfirmLeighDaythengaveaclinicalnegligenceperspectiveonthecase.PhilosophersFionaWoollardandElselijnKingmafromSouthamptonUniversityexplainedwhyautonomymattersfromaphilosophicalperspective.TherewerealsopresentationsfromLisaRamsey(MVPChairReading)representingtheperspectiveofwomen,andpresentationsfromtheRCOG(AlisonWright–Vice-President)andRCM(KathrynGutteridge–RCMPresident)aswellasfromindividualconsultantobstetriciansandconsultantanesthetistscoveringboththestrategicoverviewaswellastherealityofworkinginabusymaternityunit.ThechallengesofconsentinanintrapartumsettingwereacknowledgedindiscussionledbyMargaretMatthewsandMatthewJolly(NHSE).TheMaternityTransformationProgramme’svisionfortrulypersonalisedcarewaspowerfullydescribedbyStephenAnderson.Thegroupsharedexamplesandexperiencesofhowunconsentedinterventions,poorcommunicationandalackofrespectforwomen’sdignityinbirthcouldleadtopoorphysicalandexperientialoutcomesaswellaslitigation.Attheendofadayofhigh-leveldiscussion,information-sharinganddebateonconsentinmaternitycarepost-Montgomerythegroupcametogethertodiscussareasoffocus,initiativesandideastopilottoharnessthecurrentopportunityforchangeandprogress.JacquiDunkleyBentsummarisedthisdiscussionemphasisingthatnowwasthetimeforchangeandthattherewasanopportunityforaprogrammeofworkonconsentrunningalongsidethefiveyearforwardview.Therewasaneedtoarticulatewhyinformedconsentwasimportant–itisnotonlyalegalrequirement,andanethicalimperativetoupholdtherightsofbirthingwomenasequalcitizens,butitiswhatwomenwant,andresultsinsafer,personalisedandlesstraumaticcare.Therewasarecognitionthatpaternalismstillexistedandworktobedonebeforeinformedconsentwasuniversallyunderstoodandpracticed.Healthcareprofessionalsneededregularandpracticaltrainingonhowtohavetheseconversationswithwomen;reallylisteningtotheirconcernsandexploringmorenuancedoptions(eglowthresholdforacaesareanforawomanwhohashadprevioustraumaticbirth).Therewasdiscussionabouthowfardoctorsandotherhealthcare

professionalsneededtodevelopa“professionalskin”tocopewiththeirworkandhowtheycouldretaintheirhumanity/abilitytounderstandawoman’sperspective.Andtherewasarecognitionthatensuringinformedconsentwasgiveninfastpaced,intrapartumsituationswasparticularlychallenging.Finallythoughtsweresharedabouthowwecouldempowerwomentoplayanactivedecisionmakingrole–whatinformationdidtheywant,whenandinwhatformat?Howcouldwebanishthelanguageofallowed/notallowed?Pleaseseetheannexedagenda(andlinkstothepresentations–tofollow)forafullerunderstandingofthetopicscoveredduringtheday.Seminar Group Recommendations:

1. ThegrouprecognisedandreaffirmedtheimportanceoftheMontgomerydecisiontoimprovingmaternitycareintheUKandthefundamentalimportanceofrespectingtheautonomyofbirthingwomenandupholdingtheirhumanrights.ThegroupbelievedthatculturalchangeinsystemsandpracticewasneededtoreachaMontgomerycompliantNHS.Enablinglawfulconsentfacilitatessafermedicalcarebyensuringthatitistailoredtotheindividual'sneeds,valuesandwishes,whichinturnreduceslitigation.

2. Thegroupfeltthat,becauseoftheimportanceoftheissueandthecurrentopportunitytofeedintoexistingtransformation,qualityimprovementandsafetystrategywork,thatworkshouldbetakenforwardswithurgency.

3. TherewasastrongacknowledgmentoftheimportanceoftheMaternityTransformation

programmeinachievinglawfulconsentinmaternitycare.Discussionshighlightedthegroup’ssupportfortheambitionsoftheBetterBirthsreportandtheneedtoimplementitfully.Continuityofcarerwasfelttobeparticularlykeytoachievinglawfuldecisionmaking.Gettingtoknowawomanthroughouthermaternityjourneymeanthealthcareprofessionalsweremoreawareofawoman’sdecisions,background,andattitudetocertaininterventionswhichreducedtheneedforprolongedconversationsinlabourtoensureinformedconsent.Healthcareprofessionalswerealsobetterabletojudgethelinebetween“bolstering”awomantocontinuelaboringalittlelongerforexample,and“co-ercing”herwhenatleastsomeoftheteamhadbuiltupatrustingrelationshipovertime(concernoverthisdistinctionwasexpressedbyHCPsduringtheday).Thisimprovesoutcomes,experienceandreduceslitigation.

4. Thatco-productionandtheinvolvementofMaternityVoicesPartnerships,women’s

organisationsandotherinnovativeapproachestoinvolvingserviceuserswouldbevitalindevelopingandrefiningtools,addressingsomeofthecultureandcommunicationsissuesandprovidingevaluationandassessmentofHCPs’performance.Theseinitiativesmustensurethatvulnerableandunderrepresentedwomenarerepresentedintheseprocesses.

Whilsttherewasnotenoughtimeonthedaytohaveanin-depthdiscussiononspecificinitiativestherewasasharedambitiontodevelopamulti-layered,multi-disciplinaryapproachtoembedlawfuldecision-makinginourmaternityservices,systems,cultureandpractice.Inthisapproachspecificinterventionsandrecommendationsforimmediateimpactmixedwithlonger-termeducation,professionaldevelopmentandpolicygoalswouldbeessential.

Next Steps: The Women’s Decisions Toolkit TheMaternityTransformationteamhasacknowledgedtheimportanceofdecision-makingtoachievingtheBetterBirthsvision.InNHSEnglanddocument170202PaperB(circulatedtotheStakeholderCouncilon16/03/17)itisclearthatequippingpregnantwomen,midwives,doctorsandothercaregiverswiththeinformation,communicationskills,toolsandresourcestoenablewomentodischargetheirautonomyacrosstheperinatalperiodisakeyambitionoftheTransformationteam.Thisworksitsacrossmanyoftheworkstreamsbutparticularlyworkstreams2,3and5.Takingthisworkforwardsshouldbeapriorityinthelightofnationalsafetyambitions.Asakeyoutputofthe“TransformingConsent”Seminar,andaspartoftheMaternitySafetyStrategyandMaternityTransformationimplementation,weareseekingtoproposeaco-produced“women’sdecisions”toolkitcomprisingof::

A. developmentofanintrapartumdecision-makingandtwo-waycommunicationtool,potentiallybasedonanadaptationoftheSBARtoolortheBRAINtool.

B. supportingregularcommunicationandautonomytraining(buildingonexistingmulti-disciplinary,mandatoryandCPDopportunities)formidwivesanddoctorswithaspecific

TrainingandeducationStructures,systemsand

policies

Practiceandthedevelopment

ofprofessionaltools

Supportiveleadership,culture

andsharedvalues

Allwomenmatterinchildbirth.Enablingtheirautonomyis

centraltotransformingservicesandachievingasafe,personalisedsystem.

“decisionsconversations”focusC. supportinginformationandresourcesforserviceusers,embeddedinexistingorin-

developmentantenataleducationandresources,includingthosewithlowreading-age,withoutEnglishasafirstlanguage.

Theprojectwoulddrawoftheexpertise,reachandmulti-dimensionalteamof:• NHSImprovement’sMaternalandNeonatalHealthSafetyCollaborative• NHSResolution• NHSEnglandMaternityTransformationteam(particularlyworkstreams2,3and5)• MaternityVoicesPartnerships• NHSEnglandPatientExperienceteam• NationalMaternitySafetyChampions• RCMandRCOG• Birthrights

andotherstoensuretheworkisembeddedattherelevantplacesinthesystemandtakesadvantageoftheexistingstructuresandinitiativesaswellasreflectingtheneedforamulti-dimensionalapproachtothiscomplexissue.Eachofthethreeprojectsneedstobediscussedandrefinedwiththerelevantpartiesaboveandwithserviceuserrepresentatives,piloted,evaluatedandrolledout,whilstensuringconsistencyisretainedbetweenthethreeprojects.Theabovegroups,organisationsandindividualshaveexpressedaninterestinorcommitmenttothiswork.Considerationshouldbegiventotheappropriategovernancestructureforthisworkgivenitsdirectrelationshiptootherongoingworkinmaternity.

Programme Transforming Consent In Maternity Care 11October2017GreenTempletonCollegeOxford,LectureTheatre8.30-9.00: RegistrationandCoffee,TheStablesBar

9.00: DeniseLievesley(GreenTempletonCollege):Welcome9.10: RebeccaSchiller(Birthrights):Housekeeping,introductionsandgroup

objectives

9.2 0: ElizabethProchaska(Birthrights):TheimplicationsofMontgomery

9.4 0: SuzanneWhite(LeighDay):Aclinicalnegligenceperspective

10.00: FionaWoollardandElselijnKingma(Philosophers):WhyAutonomyMatters:A

PhilosophicalPerspective10.20: LisaRamsey(MVPChair):Whyconsentmatterstowomen-serviceuser

perspective

10.40: Facilitateddiscussion:TheproblemsandopportunitiespresentedbyMontgomery

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11.00: Coffee,TheStablesBar

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11.20: MargaretMatthews(ConsultantObstetrician):Consentintheintrapartumsetting–realities,challengesandteachingopportunities

11.40: KateMcCombeandDavidBogod(ConsultantAnaesthetists):"Paternalismandconsent:hasthelawfinallycaughtupwiththeprofession?”-Apragmaticclinicalperspective

12.00: AlisonWright(RCOG):RCOGandMontgomery-issues,initiativesand

opportunities

12.20: KathrynGutteridge(RCM):RCMandMontgomery-issues,initiativesandopportunities

12.40: StephenAnderson(MaternityTransformationProgramme):MTPand

Montgomery

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1.00: Lunch,TheStablesBar

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2.00: MatthewJolly(NHSE):CommunicationinLabourtoDeliverAutonomy

2.20: Breakoutgroups.Eachaskedtodiscussissues,existingideas/initiativesandcomeupwithaconcreteplantotackletheissues.Focusoncollaborationandfeedingintoexistingstructuresandinitiatives.

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3.00: Comfortbreak.Coffee,TheStablesBar

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3.10: Groupsreportback

3.50: Wholegroupdiscussiononseminaroutputsandrecommendations

4.15: JacquelineDunkley-Bent(NHSE):Discussionsummary4.25: RebeccaSchiller(Birthrights)Concludingremarksandnextsteps

4.30: Ends