Practical guidance for the management of palliative care ... · Practical guidance for the management of palliative care on neonatal units ... renal agenesis or anencephaly

Practical guidance for the management of palliative care on neonatal units1st EditionFebruary 2014

A Mancini, S Uthaya, C Beardsley, D Wood and N Modi

Acknowledgements

The guidance development group would like to thank:

• Membersoftheresearchworkinggroup,DrKatherineSharpeyandDrSanjayValappil

• MsRitaRanmal,DrMunibHaroonandtheClinicalStandardsCommitteeoftheRCPCH,fortheiradviceandassistanceinreviewingthisdocument

• RiaLaneforherroleasProjectManager

• TheDepartmentofHealthforfundingthisprojectandChelseaandWestminsterHealthCharityforfundingthepublicationofthisdocument

Dedication

ThisguidanceisdedicatedtothememoryofDrSanjayValappil.

Authors

Ms Alexandra Mancini(NeonatalMatronandLeadNurseforNeonatalComplex,PalliativeandBereavementCare)BSc(Hons),RGN,ChelseaandWestminsterHospitalNHSFoundationTrust

Dr Sabita Uthaya(ConsultantNeonatologistandHonorarySeniorLecturerinNeonatalMedicine)MBBS,MD,MRCP,FRCPCH,ChelseaandWestminsterHospitalNHSFoundationTrustandImperialCollegeLondon

The Revd Dr Christina Beardsley(HeadofMulti-FaithChaplaincy)BA,MA,PhD,ChelseaandWestminsterHospitalNHSFoundationTrust

Dr Daniel Wood(ConsultantClinicalPsychologist)BSc,DClinPsy,CentralandNorthWestLondonNHSFoundationTrust

Professor Neena Modi(ProfessorofNeonatalMedicine)MBChB,MD,FRCP,FRCPCH,FRCPE,ChelseaandWestminsterHospitalNHSFoundationTrustandImperialCollegeLondon

Stakeholders

Thankyoutoourstakeholdersfortakingthetimetoreviewandcommentonsuccessiveversionsofthisdocument,whichisavailablefordownloadfromtheirrespectivewebsites.

Foreword

1

Thebirthofababyshouldbeahappyevent,butapproximatelyoneintenparentswillexperiencetheanguishandfearofhavingtheirnewbabyadmittedtoaneonatalunit.Amongthesewillbeinfantswhorequireintensivecarethatishighlycomplexandtechnologicallychallengingandsomewhohaveconditionsthatmodernmedicinecannotcure.Itisinthisdauntingbuthighlyprofessionalenvironmentthatmedicalscience,technology,ethics,faith,hopeandemotionintermingleinawaythataffectseverybodydifferentlyatdifferenttimes.Itisnoteasyforanyoneknowinganinnocentandlovedbabymightdie.

Thegoalofallinvolvedinneonatalmedicineistosustainlifeandrestorehealth,butwhenthisisnotpossible,babiesandtheirfamiliesshouldstillreceivethebestpossiblecareuntiltheendoflife.Thelifespanofinfantswithterminalconditionsmayextendfromminutestoweeks,monthsorevenyears.Howeverlongorshort,caremustalwaysbetailoredtoindividualneedsoftheinfantandfamily.

Iampleasedtointroducethisguidancethataimstoequipstaffworkingonaneonatalunitwithaclearsetofprinciplestounderpinthecaretheyprovidetobabieswithlife-limitingconditionsandsupporttheirfamiliesthroughatimeofgreatturmoil.ItaimstocomplementexistingresourcesandhasbeendevelopedbymembersofthemultidisciplinaryneonatalmedicineteamatChelseaandWestminsterNHSFoundationTrust,incollaborationwiththeRoyalCollegeofPaediatricsandChildHealth,andfollowingconsultationwithawidegroupofinterestedparties.Itcoverspracticalaspectsofinfantcare,includingpainrelief,symptomrelief,comfortanddignity,themanagementofprognosticuncertainties,andtheprovisionofsupporttofamiliesduringtheirbaby’sillnessandafterwardswhencomingtotermswiththeirloss.

Clinicalstaffrequiresupportaswell,tohelpbalanceprofessionalismandempathythroughtragicandemotionalcircumstances,andthisisalsocovered.

Icommendthisasavaluableresourceforallstaffworkinginthisdifficult,butimportantandrewardingarea.

ProfessorSirBruceKeoghNational Medical DirectorNHSEngland

2

Contents

Introduction and development of guidance. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4

The guidance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7

1. How should the infant be managed once a decision has been made to withdraw or withhold life-sustaining treatment? . . . . . . . . . . . . . . . . . . . . . . . .7

1.1Discussionswithparents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .71.2Painreliefandcomfortcare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .81.3Othersymptomcontrol . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .91.4Physiologicalmonitoring . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101.5Fluidsandnutrition. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101.6Ventilationandoxygen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .131.7Locationofcare...........................................13

2.Howshouldconflictsaboutend-of-lifedecisionsonthe neonatal unit be resolved in practice? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .15

2.1Conflictsbetweenparentsandstaff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152.2Conflictsamongmembersofstaff . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

3.Whatsupportshouldbeofferedtoparentsandfamiliesoncepalliativecareis instituted for an infant, and what bereavement support should be provided?. . . . . .17

3.1Religious,pastoralandspiritualsupport . . . . . . . . . . . . . . . . . . . . . . . . . . .173.2Psychologicalandemotionalsupport . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

4. What is good practice in relation to seeking consent for post mortem examination and organ donation in infants? . . . . . . . . . . . . . . . . . . . . . .20

5.Whatsupportisneededbystafftohelpthemmanagean infant receiving palliative care?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .22

Appendices. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25

Appendix 1:Contactdetailsforsupportgroups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Appendix 2: Medications and dosages . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .28

Appendix 3:Quickreferenceguide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31

3

Introductionanddevelopmentofguidance

Professionalsworkinginneonatologyhaveadutytoactinthebestinterestsoftheinfant.Normallythegoalofcareistosustainlifeandrestorehealth.However,therearecircumstancesinwhichtreatmentsthatsustainlifearenotconsideredtobeintheinfant’sbestinterest.Thisdocument provides practical guidance to equip staffworkingonaneonatalunitwithaclearsetofprinciplestounderpinthecaretheyprovidetobabiesandtheirfamilies,andthesupporttheyprovidetootherstaffmembers,onceadecisiontowithholdorwithdrawlife-sustainingtreatment has been made—it does not cover theprocessofreachingthisdecisionasseveralpublicationsaddressaspectsofthissubject.TheRoyalCollegeofPaediatricsandChildHealth(RCPCH)guidanceWithholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice(RCPCH,2ndEdition,2004)focusesonthedecision-makingprocess.TheBritishAssociationforPerinatalMedicine(BAPM)hasalso produced national guidance Palliative Care (Supportive and End-of-Life Care): A Framework for Clinical Practice in Perinatal Medicine(BAPM,2010).Thissetsouttheprinciplesofpalliativecareforinfants.Otherresourcesare:

1.The Management of Babies Born Extremely Preterm at less than 26 weeks of gestation: a Framework for Clinical Practice at the Time of Birth(BAPM,2008).Thisguidancefocusesonextremelyimmatureinfants.

2.Critical Care Decisions in Fetal and Neonatal Medicine(NuffieldCouncilonBioethics,2006).Thisprovidestheethicalcontextforend-of-lifedecisions.

3.The Toolkit for High Quality Neonatal Services (DepartmentofHealth,2009)recommendsthat professionals receive training insupportingfamiliesduringthepalliativecareperiodandafterwards,andthatfamiliesreceivewritteninformationaboutservicesandsupportthatisavailable.Blisssupportsthese recommendations in their Baby Charter Standards (Bliss, 2009)

4. A Neonatal Pathway for Babies with Palliative Care (AssociationforChildren’sPalliativeCare,2009).Thisfocusesontheprinciplesofpalliativecareandthedecision-makingprocess.

5.A Care Pathway to Support Extubation within a Children’s Palliative Care Framework (AssociationforChildren’sPalliativeCare,2011)addressesthedecision-makingprocessandrelatedissuesforchildrenofallagesandtheirfamilies.

6.Treatment and care towards the end of life: good practice in decision-making(GeneralMedicalCouncil, 2010) provides generic guidance onend-of-lifecareincludingreferencetoneonates(section90).

Thisguidanceaimstocomplementexistingresources.Thepracticalaspectsofcarearecoveredincludingpainrelief,symptomalleviation,comfort care,management of prognosticuncertainties,andprovidingsupporttofamiliesandstaff.Fouroutoffiveneonataldeathsoccurafterwithdrawingorwithholdinglife-sustainingtreatment3,50,59,60.Thelifespanoftheseinfantsmayextendfromminutestoweeks,monthsoryears.Throughoutthisperiod,caremustbetailoredtoindividualneedsoftheinfantandfamily.

Target audience

Thisguidanceisaimedatallclinicalprofessionalsinvolvedinthemanagementandcareofinfantsin whom a decision has been made to withhold or withdrawlife-sustainingtreatment.TheguidancehasbeenspecificallydevelopedforpracticeintheUnitedKingdombuttheunderpinningprinciplesarerelevantglobally.

Target population

Thetargetpopulationareallinfantsforwhomadecision has been made to withhold or withdraw life-sustainingtreatment.ThispopulationisfurtherclassifiedintothefivecategoriesdefinedbytheBritishAssociationofPerinatalMedicine(2010):

• Category 1: An antenatal or postnatal diagnosis of a condition which is notcompatible with long term survival, eg bilateral renal agenesis or anencephaly

• Category 2: An antenatal or postnatal diagnosisofaconditionwhichcarriesahighriskofsignificantmorbidityordeath,egseverebilateral hydronephrosis and impaired renal function

4

• Category 3: Babies born at the margins ofviability,whereintensivecarehasbeendeemed inappropriate

• Category 4:Postnatalclinicalconditionswithahighriskofsevereimpairmentofqualityoflifeandwhenthebabyisreceivinglifesupportormayatsomepointrequirelifesupport,egseverehypoxicischemicencephalopathy

• Category 5: Postnatal conditionswhichresultinthebabyexperiencing“unbearablesuffering”inthecourseoftheirillnessortreatment, eg severe necrotising enterocolitis, wherepalliativecareis inthebaby’sbestinterest

Funding

ThisworkwasfundedbytheDepartmentofHealthaspartofa£30millionfundingallocationforchildren’spalliativecareservicesin2010.PrintingandpublicationcostswereprovidedbyChelseaandWestminsterHealthCharity.Thefundingbodieshadnoinfluenceonthecontentoftheguidance.

Development of the guidance

Thisguidancehasbeendevelopedfollowingasystematicreviewofpublished literature.The Appraisal of Guidelines for Research and Evaluation II (AGREENextStepsConsortium,May2009)processwasfollowedtosynthesiseevidenceandformulaterecommendations.

The guidance development group (GDG)undertook the systematic review and subsequent summaryoftheevidence.Wheretherewaslimited evidence to support recommendations forpractice,thesewerebasedontheconsensusoftheGDG.Itisacknowledgedthatthereisapaucityofgoodqualityresearchinthisarea.Theclassificationoftheevidencetablecanbefoundinthetable“Classificationofevidence”onpage6ofthisdocument.

Theguidancehasbeensubjecttotworoundsofstakeholderconsultation.FeedbackandamendmentscanbeviewedontheRCPCHwebsite.Theviewsofparentsandfamiliesinthedevelopmentoftheguidancewasobtainedbyacombinationofthereviewoftheliteratureandby involving organisations that provide support toparentsandfamiliesofthetargetpopulationinthetworoundsofstakeholderconsultations.

Methods

Thedetailsofthesearchstrategy,classificationoftheevidenceandrecommendationscanbeviewedontheRCPCHwebsite.

Update of the guidance

The guidance document will be updated every 5years.Thiswillincludealiteraturereviewandstakeholderconsultation.

5

Classificationofevidence

Classificationofevidencelevels Grades of recommendation

1++

Highqualitymeta-analyses,systematicreviewsofRCTsorRCTswithaverylowriskofbias

A

Atleastonemeta-analysis,systematicrevieworRCTratedas1++anddirectlyapplicabletothetargetpopulation,orabodyofevidenceconsistingprincipallyofstudiesratedas1+directlyapplicableto the target population, and demonstrating overallconsistencyofresults

1+

Wellconductedmeta-analyses,systematicreviewsorRCTswithalowriskofbias

B

Abodyofevidenceincludingstudiesratedas2++directly applicable to the target population and demonstratingoverallconsistencyofresults,orextrapolatedevidencefromstudiesratedas1++or1+

1-

Meta-analyses,systematicreviewsorRCTswithahighriskofbias

C

Abodyofevidenceincludingstudiesratedas2+directly applicable to the target population and demonstratingoverallconsistencyofresultsorextrapolatedevidencefromstudiesratedas2++

2++

Highqualitysystematicreviewsofcasecontrolorcohortstudies.Highqualitycasecontrolorcohortstudieswithverylowriskofconfoundingorbiasand a moderate probability that the relationship is causal

D

Abodyofevidencelevel3or4orextrapolatedevidencefromstudiesratedas2+

2+

Well conducted case control or cohort studies with alowriskofconfoundingorbiasandamoderateprobability that the relationship is causal

E

Recommendedbestpracticebasedontheclinicalexperienceoftheguidancedevelopmentgroup

2-

Case control cohort or cross sectional studies with ahighriskofconfoundingorbiasandasignificantrisk that the relationship is not causal

3

Non-analyticstudies,egcasereports/caseseries

4

Expertopinion

6

Introductionanddevelopmentofguidance

The guidance

1. How should the infant be managed once a decision has been made to withdraw or withhold life-sustaining treatment?

Summary of evidence

Several papers deal with some or all aspects ofcareoftheinfantonceadecisionismadetoinstitutepalliativecare.ThequalityofthepapersvariesfromliteraturereviewsandDelphi-basedconsensustoexpertopinion.

1.1 Discussions with parents

Summary of evidence (Category 4)

Papershighlighttheimportanceofaflexibleapproach, sensitive to parent views during the actualprocessofwithdrawalandwithholdingof intensive support15, 20, 52 (Category 4)43, (Category3).Somepapersdealwiththepathwayofpalliativecareinsituationswherethefetusisdiagnosedwithafetalanomalyandtheparentschoose to continue with the pregnancy26,43,44 (Category4).

Recommendations for practice (Grade E)

• Haveaface-to-facediscussionwithbothparents in a quiet room away from theneonatalunit.Givethemtheoptionofinvitingotherfamilymembersoraclosefriendtobewiththem.

• Phrasessuchasthefollowingmayhelp:“Ouraimistohelpyourbabyhaveapain-free,peacefuldeath”,“Wecannotcureyourbabybutwewillalwayscareforhim”,“Wewanttosupportyouthroughthisdifficulttime”.

• Arrangeforaninterpretertobepresentifneeded—avoid interpretationby familymembersorchildren.

• Ensurethatparentshaveprivacy,andadequatetime and opportunity to discuss their views andfeelingsandtoaskquestions.

• Enable the junior doctor and the nursecaringfortheinfanttobepresentduringthediscussionsothattheyareawareoftheprocessinvolved,andgainexperience.

• Ifitisnecessarytotakesamplesoftissuebeforedeathinordertomakeadiagnosis,thisshouldbeclearlyexplainedtotheparents.Consider zygosity testing in the caseofsamesextwinsandtriplets.Organisationssuch as the Multiple Births Foundation (see Appendix1fordetails)canhelpwithzygositytesting.

• Agreeatimeandlocationforwithdrawaloflife-sustainingtreatmentwiththeparents.

• Explainwhatwillphysicallyhappentotheinfant,whattoexpectpractically,andifthelengthoftimeuntildeathisuncertain.

• Ifwithdrawaloflife-sustainingtreatmentislikelytoleadtoimmediatedeath,explainthattheinfantmaygaspandhavecolourchangestotheirfaceandbody.

• Askiftheparentswouldliketobepresentattheactualtimethatlife-sustainingtreatmentiswithdrawn.Bemindfulthattheymayprefernot to, and also that they may change their mind.Asktheparentswhethertheywouldlikesiblingsorfamilymemberstobewiththem.

• Askiftheparentswouldliketheirinfanttobedressedinaspecialway,oriftheyhavespecificpreferences,suchasaroundbathingoranointing.

• Askiftheparentswouldliketoholdtheirinfant.

• Askiftheywouldlikephotostobetakenandofferthemtheopportunitytotakehandprintsandfootprints.Ifparentsdonotwantphotos,offertotakesometokeepinthemedicalrecords in case they decide they would like thematalaterdate.Askparentsiftheywishto keep any items such as blankets, hats or otheritemsthatwererelatedtothebaby’scare.

• Iftheinfantisoneofasetoftwins,tripletsorquads,wherepossibletakeaphotographofthebabiestogetherwiththefamily.Thiscouldbeincubatorsorcotsclosetogetherifthatistheonlywaytodothisiftheotherinfantisverysick.

7

The guidance

• Ensurethenursewhoisallocatedtotheinfantandfamilydoesnothaveanotherinfanttocarefor.Asktheparentsiftheywouldlikethe nurse to be present behind the screen or intheroomwiththem.Iftheypreferprivacyexplainhowtheycancallthenurseandadvisethathe/shewillreturnintermittently.

• Letparentsknowthatitispossiblefortheirbabytoremainwiththemafterdeathiftheywish.Ifapostmortemexaminationistobecarried out, it is not advisable to keep the body outsideofacoolroomormortuaryforlongerthan4–6hours.Parentsshouldbeinformedthatitispossibletoseetheirbabyafterthebody has been taken to the mortuary and followingthepostmortem.Itmaybepossibleforthebodytobetransferredtoacoolroominachildren’shospice.

• Itmaybepossibleforthefamilytotaketheinfanthomeafterdeathuntilthefuneral.Pleaserefertolocalguidelinesandpolicies.

• Considerprovidingwritteninformation.

1.2 Pain relief and comfort care

Summary of evidence

Theprovisionofpainreliefafterlife-sustainingcare is withdrawn is inconsistent. Lowerbirthweightinfantsarelesslikelytoreceiveanalgesic medications1,5,36,43,46,58(Category3)12 (Category4).Practicalguidanceontheuseofpharmacological agents has been summarised5 (Category3).Onepaperreferstonon-invasivedeliveryofpainreliefusingintranasalfentanyl51 (Category4).Severalpapers recognise theimportanceofcomfortcarealthoughthereisvery little practical guidance10,13(Category4).Theuseofmedicationstorelievepainmayhavetheunintentionalconsequenceofshorteninglife,theso-called“doctrineofdoubleeffect”.However,doctors in some countries have reported the practiceofadministeringmedicationswiththeaimofendinglife17,56 (Category 2)22,39,57, (Category4).Allpapers concludewith therecognitionoftheneedforpracticalguidanceonpainreliefto infantsreceivingpalliativecare11 (Category 4). Some papers reviewpractice43 (Category3) andothersproviderecommendations based on Delphi consensus15 (Category4).Toolstomeasurepainininfantshavemanylimitationsandtherecognitionofpainanddistressisdifficult55.Theoralorbuccalrouteispreferabletotheintramuscularandsubcutaneousrouteasthisisunreliableininfants,aswellasbeingpainful4(Category4).


• Considerationshouldbegiventoreliefofpainanddiscomfortforinfantsreceivingpalliativecare.Thisincludesthetypeofmedication,thedose,routeofadministrationandthelikelydurationofneed.Considerationshouldalsobegiventotheuseofformaltoolstoassesspain.

• Shouldtheinfanthaveintravenousaccessinplace,thisrouteispreferableintheimmediateperiodafterdiscontinuationoflife-sustainingcare.

• Ifan infant isalreadyreceivinganalgesicmedication,thisshouldbecontinued—ifopiates are to be initiated, an initial bolus doseshouldbegivenbeforecommencingan infusionsothatadequateanalgesia isachievedpromptly.Thedosemaybeincreasedor reduced depending on ongoing assessment ofdistressanddevelopmentoftolerance—parents should be made aware that opiates while relieving pain and distress also suppress respiratorydriveandmayhastendeath.

• Iftheintravenousrouteisnotavailableandadequate analgesia cannot be achieved through oral medication, a subcutaneous infusionmaybenecessary. Intramuscularmedicationisneverappropriate.Forrapidsymptom management, buccal medication can be considered, usually in addition to longer acting medication via the enteral route or subcutaneousinfusion.

• Non-narcoticanalgesiasuchasparacetamolandoralsucrosemaybeusedforlessseverepainorincombinationwithnarcoticanalgesics.

• RefertoAppendix2foralistofsuggestedmedicationsanddoses.

• Nonpharmacological interventionsmaybe used in conjunction with analgesicmedic at ions — t hes e inc lude a c a lm environment with minimal noise and light stimuli,non-nutritivesuckingwithapacifier,music, and positioning with arms and legs flexedclosetothetrunkusingablanketorrolls,andmassage.

• Assisttheparentstoholdtheirbaby.

• Supportcontinuedsucklingatthebreastifthemotherwishes.

8

Mrs A

MrsAwasreferredantenatallytotheneonatalteamat31weeksgestation.HerbabyhadbeendiagnosedwithaskeletaldysplasiawithadifferentialofeitherThanatophoricDysplasiaorOsteogenesisImperfecta.Itwasuncertainifthebabywouldsurvivethepregnancyorthedelivery,and,ifso,whatherlifeexpectancywouldbe.Itwasagreedthatactiveresuscitationwouldnotbeintheinfant’sbestinterestgiventhelethalcondition.MrsAwasconcernedthattheinfantshouldnotexperienceanypainordistress.Shereceivedcounsellingfromtheneonatalconsultantandmatron.

Possibleroutesfortheadministrationofanalgesiawerediscussedshouldtheinfantappeartobeinpainfromfracturesinthecaseofadiagnosisofosteogenesisimperfecta.Itwasnotconsideredappropriatetoinsertanintravenouscannulaasthiswouldhaveinvolvedanuncertainnumberofpainfulprocedures.Theuseofbuccalmorphinewasagreeduponandthedoseandpreparationdiscussedwiththeneonatalpharmacistsothatthiswasavailableafterdelivery.Atbirththebabywasborninpoorcondition,wasassessednottobeinpain,andlivedonlyforafewminutes.

Learning point: When a plan is made to withhold intensive care in the antenatal period, consideration shouldbegiventotherouteandreadyavailabilityofanyproposedpostnatalanalgesia.

1.3 Other symptom control

a) Seizures


Seizuresareasourceofdistressfortheinfant,thefamilyandcaregivers.Seizuremedicationshould be administered using a suitable route4,15.


• Ifaninfantisalreadyreceivingmedicationstocontrolseizuresbeforelife-sustainingsupportiswithdrawn,thisshouldbecontinued.Ifdeathdoesnotfollowthewithdrawaloflife-sustaining support, ongoing management ofseizuresshouldinvolveaconsiderationof the typeofmedication and route ofadministration.

• RefertoAppendix2formedicationsanddoses.

b) Secretions


Onepaperrecommendstheuseofhyoscineandglycopyrrolate to reduce secretions4.


• Gentlesuctioningandmedicationssuchasglycopyrrolate or hyoscine may be used to decreaserespiratoryandsalivarysecretions.


9

The guidance

1.4 Physiological monitoring


Allpapersthatmakereferencetomonitoringofaninfantreceivingpalliativecarerecommendthatinvasiveand/orelectronicmonitoringisnot appropriate and that intermittent physical assessment should be carried out15,20,52.


• Invasivetechniquessuchasinvasivebloodpressure monitoring should be discontinued—cardiac and saturation monitors should also be turnedoffpriortodisconnectingmechanicalventilation.

• Theinfantshouldbemonitoredforphysicalsigns that suggest discomfort (crying,whimpering,panting,tachycardia,excessivesecretions,drymucousmembranes).

• Bloodtestsandbloodgasmeasurementsshouldnolongerbecarriedout.

• Once life-sustaining support has beenwithdrawn,intermittentphysicalexaminationwithauscultationoftheheartrateshouldbecontinuedbythenurseordoctorcaringfortheinfant.

1.5 Fluids and nutrition


Two papers address the continued provision offluidsandnutrition in infantswherelife-sustaining care is no longer considered in the infant’sbestinterests14, 48.Bothpapersrecognisethedifficultydoctorsandnursescaringforinfantswithlife-limitingconditionshavewithwithholdingandwithdrawingfluidandnutrition.

Itisarguedthatwithdrawalofanendotrachealtube (and consequent respiratory distress) is not morallydifferentfromwithdrawalofartificialnutrition or hydration (and consequent distress arisingfromhungerorthirst)48.Thedifferenceslieinthelengthoftimefromthewithdrawaloftheinterventionuntildeathandthemethodofalleviation.

Baby A

BabyAwasbornat28weeksgestationfollowingantenataldiagnosisofseverehydronephrosis,enlargedbladder,polyhydramnios,andinsertionofavesico-amnioticshunt.Hehadastormypostnatalcoursecomplicatedbyintestinalperforation,recurrentbowelobstruction,suprapubicbladdercatherisation,periventricularleucomalacia,jejunostomy,bilateralsensorineuralhearinglossandchroniclungdisease.Afterseveralmonthsoffeedintolerance,biopsiesrevealedadiagnosisofcongenitalbladderandbowelmyopathy.Atthisstagetheinfantwasnotonanyformofrespiratorysupportbutwasdependentonparenteralnutritionadministeredthroughacentralline.Boweltransplantwasnotconsideredinhisbestinterestsgiventhepresenceofseverebraininjury.

Theparents’wishwastospendtimewiththeirbabyawayfromanintensivecareunit.Allinvasivetestsandmonitoringwerestopped.Discussionsbetweentheparentsandthemedicalstaffresulted in a decision to continue with parenteral nutrition although it was acknowledged that thiscouldprolonglifeanddelaydeath.

Followingdiscussionwithhisparentshewastransferred,stillreceivingparenteralnutrition,toachildren’shospiceafter5andahalfmonthsonaneonatalintensivecareunit.Thisapproachallowedtheparentstimewiththeirinfantwiththefocusofcareonhiscomfortandqualityoflife.BabyAdiedtwoweeksaftertransfertothehospice.

10

Baby B

BabyBwasbornat38weeksgestationtoconsanguineousparents.Shedevelopedfunctionalbowelobstructionandwasunabletotolerateevensmallamountsofenteralfeeds.Twolaparotomieswithstomaformationswereperformed.Followingmultipleintestinalbiopsies,completebowelaganglionosiswasconfirmed.Herparentswerestronglyopposedtoanyformoflife-sustainingtreatmentincludingparenteralnutritionorotherintravenousfluid.Theywereopposedtoboweltransplantationgiventheprolongedwait,substantialriskofliverdiseaseandsystemicinfection.BabyBhadlargenasogastricandstomalosses.Herparentsexpressedthewishtotakeherhomebreastfeedingondemandwithnolinesortubesandtoallow“naturetotakeitscourse”.Severalmultidisciplinarymeetingsfollowed—after2monthsBabyBwasdischargedreceivingdemandbreastfeedsandintravenousglucose-salinethroughapercutaneousintravenouscatheter.Shediedtwoweekslater.

Someofthedilemmasthatfacedthehealthcareteamwere:

• Iftheintravenousaccesshadbeenlostorbecomeinfectedwouldthesubsequentinsertionofsurgicallyplacedintravenouscatheterbeethicallyjustified?Inthisinstanceastheintravenouscatheterwasalreadypresentadecisionwasmadetouseit.Itwasconsideredinappropriatetoinsertasurgicalcatheterforfeedingonceadecisionforpalliativecarewasalreadymade.

• Wasitmorallyandethicallyjustifiedtoprolongalifewithartificialfluidswhenthiswasnotconsideredtobeinherbestinterestbyherparents?Justificationforprovidinghydrationviatheintravenousroutewasthepreventionofdehydrationresultingfromtheexcessivelylargefluidlossesfromthebowel.Itcouldjustaseasilybearguedthatsymptomsofthirstandhungercouldbemanagedwithattentiontocareofthemucousmembranesandskin.

Thiscasehighlightsthedifficultiesthatfacemedicalandnursingstaffinmakingdecisionsinvolvingthewithholdingorwithdrawalofartificiallyprovidedfluidsandnutrition

Learning points:Inasituationwhereaninfantisunabletotolerateoral/enteralfeedsandwheredeathisnotimminent,managementoffluidsandnutritionrequirescarefulconsiderationofissuessuchasrouteofadministrationandtypeoffluid,thelocationofcare,andparentalwishes.


• Thegoaloftreatmentiscomfort,nottheprovisionofnutrition.

• Inthoseinfantsabletotoleratemilkfeedstheir ongoing provision should be determined by their clinical condition and the cues that the infantdemonstrates.

• Oralnutritionshouldonlybewithheld ifitisfeltthatprovidingitwillcausepainordiscomfort.

• Ifvomitingisaproblem,thevolumeofenteralfeedsshouldbereducedappropriately.

• Itmaybeappropriatetoallowtheinfanttosuckleatthebreastifabletodoso.

• Inthoseinfantsinwhomthedurationbetweenthewithdrawaloflife-sustainingcareanddeathisexpectedtobeshort,itisreasonabletoceaseallfeedsifitisfeltfeedingcouldcause distress, and to discontinue intravenous hydrationandnutrition.

• Ifdeathdoesnotfollowthewithdrawaloflife-sustainingcare,or ifpalliativecare isinstitutedinaninfantwheretheprovisionofhydration and nutrition is the sole intervention maintaininglife,thenconsideringstoppingthisisappropriateonlyiftodosowillnotresultinhungerordistresstotheinfant.Anysuchdecision should involve discussion with the parents.

• Any decision to continue to provideintravenous nutrition and hydration should betakeninthelightofthepainanddiscomforttotheinfantofcontinuingtoprovidefluidandnutrition(egneedforcentralorperipheralvenousaccess).

11

The guidance

• Iftheinfantisdischargedhomeortoahospiceforpalliativecare,arrangementstocontinueordiscontinuemedicallyprovidedfluidsandnutrition will need to be made in advance and theparentssupportedaccordingly.

• Gastrostomy,nasogastricandjejunostomyfeedingwill requireparent training andprofessionalcommunitysupport.

• Thebenefitsofsurgerytoallowfeedingeithervia the intravenous route or via the enteral route must be balanced against the burden oftheinterventionandtheprolongationofdeath.

Suggestedalgorithmforthemanagementoffluidandnutritionalintakes

12

Babyabletosucksafely

Baby able to digest milk

Demand feedingby

breast or bottle

Is death imminent?

Feed via this route

Comfortcare

Locationofongoingcare

Decision based on the followingfactorsonan

individualised basis:

1.Parentalwishes

2.Locationofcare

3.Presenceofcentrallineorother intravenous access

4.Nutritionalneedsversus hydration

Type and route offluids

Intravenous fluids,centralorperipheral route

Parenteralnutrition, central or

peripheral route

Consider surgical gastrostomy orjejunostomyifappropriate

forlongertermfeeding

Does baby have ajejunostomyorgastrostomy?

Isdeathimminent?

Canbabyhaveanasogastrictube?

Baby able to digest milk

Hospice Home Hospital

YES

YES YES

YES

YES

YES

NO

NO

NONO

NO

NO

NO

1.6 Ventilation and oxygen

Summary of evidence

Several papers address thewithdrawal ofmechanical ventilation5,43 (Category3)11, 44, (Category 4)19, (Category 2), agreeing that invasive ventilationconstituteslife-sustainingsupport.

Somepapersaddresstheuseofoxygentorelieve symptoms or air hunger but conclude thatopiateanalgesiaratherthanoxygenmaybemoreeffectiveatrelievingsuchdistress11,15 (Category4).


• Explainexactly to theparentswhatwillhappen, when it will happen and which memberofstaffwillbepresent.

• Explainthatdeathmaynotbeimmediateandthattheinfantmaysurviveforaprolongedperiod.

• Explainhowtheinfantwillbecaredfor.

• Decideinadvancewhichmemberofstaffwillberesponsiblefortheactualremovaloftheendotracheal tube and turning the ventilator off.

• Aspiratethenasogastrictube—considernotfeedingtheinfantjustpriortoextubation.

• Turnoffthealarmsoftheventilatorandmonitorspriortodisconnectingthese.

• Suctiontheendotrachealtubebeforeremoval.

• Givetheparentsthechoiceofbeingpresentandholdingtheirinfant

• Withdrawal of less invasive forms orrespiratory support such as nasal continuous positive airway pressure and nasal cannula oxygenmaybeappropriateifababyisdyingandcontinuedprovisionofrespiratorysupportonlyservestodelaydeath.

1.7 Location of care

Summary of evidence

Thereareadvantagesanddisadvantagesofdifferentlocations16,18,27 (Category 4)24, (Category 3).Itmaynotbepracticabletoarrangetomovetheinfanttoadifferentlocation.


• Theprinciplesofpalliativecareshouldbeconsistentlyappliedregardlessoflocation.

• Thebestavailablespacewithprivacyandcomfortforparentsandfamilyshouldbeused.

• Discusswithparentsiftheyprefertostayintheneonatalunitwithascreenforprivacyormovetoasideroomifavailable.

• Ifthemotherisreceivingcareherself(forexampleafteracaesareansection)considerproviding palliative care on the postnatal wards in a private area that does not compromise her own care and provide nursing supportfortheinfant.

• Considertransfertoahospice,especiallyifthedurationbetweenthewithdrawaloflife-sustainingtreatmentanddeathisexpectedtobe days rather than hours—ensure this option isavailablebeforediscussingitwiththeparents.

• Whenaninfantistransferredtoahospicesupported by a palliative care team, it is recommended that there is a designated senior neonatal doctor with whom the palliative careteamcanliaiseafterdischarge.Thisisparticularly important should there be a change intheinfant’sconditionafterdischarge.

• Considerthepossibilityoftransferhomeortoahospitalclosertohome,priortoextubation.Thefamilymayhaveestablishedrelationshipswithstaffatthelocalhospitalormaywishtohavefamilynearby.Thiscanonlybedoneifthereissufficientsupportavailableatthechosenlocationtosupportextubationandprovideongoingcare.

• Liaisewithcommunitypalliativecareservicesand the transport team to ensure services and supportcanbeprovidedbeforediscussingoptionswithfamilies.

• Tailorcaretotheindividualneedsoftheinfantandthefamily,butberealistic.

• Ifadecisiontoinstitutepalliativecarehasbeenmadeintheantenatalperiodconsiderofferingparentstheopportunitytovisitahospice.

• Throughoutthisprocessitisimportanttocommunicateregularlycurrentinformationwith other specialties that may be hospital orcommunitybased.ThiscouldincludeGPs,health visitors, community nursing teams and maternityservicesinvolvedinthecareoftheinfantandwhocansupportthefamily.

13

The guidance

Baby C

BabyCwasbornattermfollowinganemergencycaesareansectionundergeneralanaestheticafteranantepartumhaemorrhagesecondarytovelamentousinsertionofthecordandvasapraevia.Thebabyreceivedprolongedresuscitation,sufferedsignificanthypoxicischaemicencephalopathyandwithdrawaloflifesupporttreatmentwasconsideredappropriate.Thefatherwishedtowaitforhiswifetorecoverfromthegeneralanaestheticbeforethistookplace.Themotherwhowasunwellherselfwasunabletospendtimewithherbabyontheneonatalunit.Thebabywasextubatedontheneonatalunitandtransferredtoasideroomonthepostnatalwardwhereaneonatalnursecontinuedtoprovideonetoonecare.Seizureswerecontrolledonthepostnatalward—medicationswereadministeredbyumbilicalcatheter.Themotherwishedtosuckleherbaby,andwassupportedtodoso.Theirdaughterlivedfortwodays—duringthistimetheparentshaduninterruptedtimewithher.Afterthebabydiedacoolingmattresswasusedsothatshewasabletoremainintheirroomonthepostnatalwardforseveralhours.

Learning point: Traditionally palliative care is rarely provided on a postnatal ward, when an infantrequiresseizuremanagement.Inthiscaseitwaspossibletoprovidethiswithsupportfromaneonatalnurse.Alocationwaschosenthatwasoutofearshotofhealthycryingbabies,somethingthecouplementionedwhenseensubsequentlyforbereavementcounselling.Theparentscherishedthetimetheyhadspentwiththeirdaughterbothduringlifeandafter.

Baby D

BabyDwasoneofmonochorionicdiamniotictwinsbornat28weeksofgestationwithoesophagealatresiaandtracheo-oesophagealfistula.Shespent6monthsontheneonatalunitlongafterhertwinhadbeendischargedhome.Visitingrestrictionsduringthebronchiolitisseasonmeantthathertwinwasunabletovisittheunitafterherdischarge.BabyDhadseveraloperations.Afteranoperationtoclosethegapintheoesophagusshesustainedseverebraininjuryandpalliativecarewasinstituted.Itwasanticipatedthatshemightlivefordaysorweeks.Theparents’wishwastotakeherhomeandspendtimeasafamilywiththeirtwins.Beforethistookplacethetwinswereabletospendtimetogetherontheneonatalunitinaparents’roomandhavephotosandvideostakentogether.Withsupportfromthepalliativecareteamandtheneonatalunitnursingstaff,thebabywastransferredhomewhilereceivingsomejejunostomyfeeds.Anopendoorpolicywasinstituted,withaparents’roomontheunitkeptfreeforthefamilyshouldrespiteberequired.BabyDlivedforaweekafterdischarge.Duringthisperiodtheneonatalconsultantandthepalliativecareteammaintainedcontactwiththeparents.WithhelpfromtheMultipleBirths Foundation, zygosity testing with buccal smears was carried out on both twins at home astherewasasuspicionofamitochondrialdisorder.Asthiswouldhavehadimplicationsforthewelltwinconfirmationofzygositywascarriedout.Afterdeaththeneonatalconsultantvisitedthefamilyathometodiscusspost-mortemexaminationandseekconsent.

Learning points:Inasituationwhereoneoftwinsisreceivingpalliativecare,considerationmustbegiventoallowingthefamilytimetogetherwithbothinfants.Considerzygositytestingforallsamesexdichorionictwins.Notknowingiftwinswereidenticalcanbeagreatregretforthesurvivingtwinortripletsandparentslateron.

14

2.Howshouldconflictsaboutend-of-lifedecisionson the neonatal unit be resolved in practice?

Summary of evidence

Inmakingadecisiontochangethefocusofcare to palliation there may be occasions when thereisadifferenceofopinion,betweentheinfant’sparentsandtheclinicalteam,amongthemembersoftheclinicalteam25,37 or between the parentsthemselves.

RCPCHguidanceonwithdrawingandwithholdinglife-sustainingtreatmentadvisesthatunanimitybetweenthemembersofthehealthcareteamis not essential and the ultimate responsibility forthedecisionlieswiththeseniorclinicianincharge.Verhagenetal57studiedthefrequencyandbackgroundofend-of-lifedecision-makingintheNetherlands.Conflictswithintheteamarosein4%ofcasesandbetweenparentsandhealthcareprofessionalsin12%.Allconflictswere resolved by reaching consensus that involvedfurthermeetings,carryingoutmoreinvestigations and seeking a second opinion (Category3).Resolutionofdisagreementsbynegotiation, conciliation and compromise, is also referredtobyLarcheretal30(Category4).

Whereconsensusbetweenparentsandstaffcannot be reached, Nelson and Shapiro45 consider theroleofaclinicalethicscommittee(Category4).Theysuggestthattheprimaryroleofthecommitteeshouldbetoprovideaforumforopendiscussion.Consensusmaybereachedbutshouldnotbethegoal.Theyfurthersuggestthatthediscussions,butnottheadvice,ofthecommitteeshouldbeadmissibleinjudicialproceedings.ASwisssurveyofpracticefoundthatinnoinstancewas a decision made to withhold or withdraw intensive support without parental agreement5 (Category3).

2.1Conflictsbetweenparentsandstaff


These recommendations are based on a summary ofstepsreportedbycliniciansininterviews57 expertopinionontheroleofclinicalethicscommittees,andconsensuswithintheGDG.

• Allowparentstimetoconsiderthedecisionandarrangefortheseniorcliniciantoseethemagainaftertheinitialmeetinginwhichthe decision to institute palliative care was reached.

• Reassure them thatwithdrawal of life-sustaining treatment does not mean that careoftheirinfantwillbewithdrawnbutratherthattherewillbeashiftinthefocusofcare.Staffshouldnotappearjudgmentalshould a parent indicate a wish to continue life-sustainingsupport.

• Ifrelevant,explainthatlifesupporttechnologyisnotinitselfacurativetreatmentanddoesnotchangethebaby’sunderlyingcondition.

• Explorethereasonsbehindtheparents’viewsofthesituation.

• Suggestparentsmightfindithelpfultodiscusstheirfeelingswithfamily,friendsorspiritual/religiousfigures—offeraccesstohospitalreligiousrepresentativesifappropriate.

• Offerparentsasecondopinioneitherwithanother senior clinician within the team or outsidethehospitalofcare.

• Consider approaching a clinical ethicscommitteeifaccesstooneexistsormedicalmediationservicesifappropriate.

• Whileawaitingtheoutcomeoftheseactions,provideparentalreassurancethatthecareoftheirinfantwillcontinueunchanged.

15

The guidance

Baby E

BabyEwasbornat24weeksgestationandsufferedmanyofthecomplicationsofprematurityincludingseverebilateralperiventricularhaemorrhage,chroniclungdiseaseandsurgeryfornecrotisingenterocolitis.Acuterenalfailureensuedandthebabydevelopedafullthicknessdehiscenceoftheabdominalsurgicalwoundandexternalextravasationofbowel.BabyE’smotherwassingle,unsupportedandofMuslimfaith.Shefeltunabletoagreetotherecommendationthatlife-sustainingsupportbewithdrawn.Thefocusofcareforthisbabywasredirectedtopalliationwhilecontinuingtoreceivelife-sustainingtreatment.Comfortcareandanalgesiawereprovidedandinterventionsminimised—amajorconsiderationforstaffwasBabyE’smother.ShereceivedsupportfromthehospitalImam,clinicalpsychologistandhersister.Staffalsorequiredsupportfromtheclinicalpsychologistindealingwiththeirdistress.Themotherwaswellawarethatherbabyappearedtobedistressedandinpainandacknowledgedthis.Intheireffortstobringthemotheraroundtoagreeingtowithdrawalofintensivesupport,staffcaringforthebaby admitted to reiterating this message at every opportunity along with reassurances that painreliefwasbeingescalated.Thebabydiedstillreceivingmechanicalventilationtwoweeksaftercarewasredirectedtopalliation.

Whenseenforbereavementcounsellingseveralweekslater,themotherofBabyEstatedthatsheperceivedthestaff’sfocusonpainreliefforthebabyasbeingjudgmentalofherdecisionnottowithdrawlife-sustainingtreatment.Shestatedthatasamothershewasacutelyawareofherbaby’sdistressandherinabilitytoagreetowithdrawalofintensivesupportshouldnothavebeenperceivedasherbeingindifferenttothepainherbabywasin.

Learning point:Thiscaseillustratestheemotionaldistressthatstaffcaringforsickbabiesmayfeel.Staffshouldbeencouragedtoexpressthistotheconsultantinchargeofthebaby,asanoutletfortheirfeelings.Staffmustbecarefulnottolettheirfeelingsofdistress,andhenceafocusonpainandanalgesiaforthebabydominatetheirconversationswiththefamily.

2.2Conflictsamongmembersofstaff


• Allmembersofstaffwhatevertheirlevelofseniority should be included in discussions abouttheongoingcareoftheinfantandindecisionsaboutappropriatenessofcontinuinglife-sustainingsupport—theweightoftheopinionofeachmemberoftheclinicalteamwilldependon theirexperiencebut theultimate decision rests with the senior clinician incharge.

• Regular, scheduled and well attendedunit meetings, psychosocial meetings and multidisciplinary case discussions promote team cohesiveness, and healthy team functioning,andarekeymeansofreducingconflictbetweenstaff,andreducingthepotentialforescalation.

• Anexternalfacilitatormaybehelpfulwherethereissignificantconflict.

• Neonatalunitsshouldhaveaccesstoaclinicalpsychologistandstaffshouldbeawareofothersourcesofsupport(Appendix1).

• Reflectivepracticesessionsfacilitatedbyatrainedmemberofstaffcanbehelpfulbothbeforeandafteradecisiontoinstitutepalliativecarehasbeenmade—staffshouldbeoffereddebriefingafterthedeath.

• Chaplaincy/multi-faithchaplaincy/spiritualcareteammemberscanprovidesupportforstaffespeciallywhenstrongbeliefsareafactor.

16

3.Whatsupportshouldbeofferedtoparentsand families once palliative care is instituted for an infant, and what bereavement support should be provided?

3.1 Religious, pastoral and spiritual support


The spiritual care of families is a sharedresponsibilityofthemultidisciplinaryteam.Inmanysettingschaplainsareanintegralpartofthepalliativecareteam.Whenavailable,parentsshouldbeinformedofthismeansofadditionalsupport8.

Medicalandnursingstaffcansupportfamiliesby their sensitivity to spiritual matters and byfacilitatingreferralstochaplaincy34 or the family’spreferredreligiousleader11.Supportservices, including chaplaincy, are sometimes under-utilisedanditisrecommendedthatstaffaremadeawareoflocalprovision33.Recordingfamilies’religiousaffiliationisoftenoverlooked47 andthedocumentationofemotionalorsocialsupportisfrequentlylacking1.

Support provided by chaplains and other religiousleadersisdescribedasbeinghelpfulforfamilies1, 9, 11.Ritescanincludelistening,prayer,blessing or anointing with oil, baptism and other initiationrites,funeralsandmourningrituals,and advice on cultural and religious practices suchasfasting35.


Consultationsfromadedicatedpalliativecareteam can support the neonatal team in providing optimumcareforthebabyandthefamily,andincrease the support provided by chaplains9,23,24,33.

• Thefamily’sreligionshouldbedocumentedwhentakingtheadmissionhistory.

• Staffshouldassessthespiritualandreligiousneedsofthefamilyandifappropriate,refertothechaplaincy/multi-faithchaplaincy/spiritualcareteamoraskifthefamilywouldliketohavetheir own religious or spiritual representative contacted.

• Staffshouldbeawarethateachfamily isindividualandwillhavedifferentbeliefs,andculturalandreligiousbackgrounds.

• Berespectfulofthefamily’sreligiousbeliefsandrituals—ifyouareunsureofritualsorcorrectprocedures,askthefamily.

• Bemindfulthatthemotherandthefathermayhavedifferentreligiousorculturalbeliefs.

• Whilereasonabletoconsiderofferingfamilieswhodescribethemselvesas‘notreligious’or‘non-practicing’theofferofaprayerorablessing,theirviewsshouldberespected.

Baby E

(Reference“BabyE”onpage16)

Learning point:MostUKhospitalshaveamulti-faithteamabletoprovidesupporttoparentsandfamiliesofinfantsonaneonatalunit.ThemotherofBabyEwasoffereddailyreligiousandculturalsupportbythehospital’sImamwhowasabletoadviseherthatintheabsenceofcurativetreatmentwithdrawalofintensivesupportwasnotagainsttheprinciplesofthereligion.Althoughthemotherfeltunabletoagreetotheclinicalrecommendationthatintensivesupportforherbabyshouldbewithdrawn,herdecisionwasfullyinformed.

17

The guidance

3.2 Psychological and emotional support


Severalpapersdescribe the importanceofsupportingparentsthroughtheprocessofmaking critical care decisions that involve their baby.Thismaybeprovidedbyawidevarietyofprofessionals1,44,61,62.Thereisagreementthatparentsandfamiliesvalueopportunityto spend as much time as they would like with their infant inprivacy, andbegiveneveryopportunity to create memories together as a family2,11,20,22,30,31,33,40,43.However,itisimportanttonotethattheliteratureinthiscontext isdominatedbystudiesthatfocusonbereavementsupportfollowingdeath.Professionalsbenefitfromtraininginsupportingfamilies28.

In relationtosupport followingdeath, theliteraturesuggestsafollowupbereavementappointment should be scheduled within two monthsoftheinfant’sdeathwithaneonatologistknowntothefamily,andanursewhocaredforthe baby and has an established relationship withthefamily15,30,39.Areviewoftheliteratureofbereavementinterventionsafteraneonataldeath concluded that there is insufficientevidenceavailableandthereforethereistheneedforfurtherresearchtobeundertakeninthisareatodeterminetheeffectivenessofbereavement interventions23,49(Category2++).

Theliteratureregardinggriefhasviewedtheexperienceasajourneywherebyindividualswhohaveexperienced losspass throughaseriesofstagesleadingtoacceptanceoftheloss, through to re-engagementwith theworld63.Morerecentpapershavedescribedtheexperiencemoreasanoscillationbetween‘lossorientated’processes(suchasexperienceofgriefandavoidanceofchange)and‘restorationorientated’processes(suchasdistractionfromgriefandthedevelopmentofnewidentitiesandre-engagementinrelationships)53.Whiletheformermodelsuggeststhatamoredirectiveformofsupportmightbeuseful,ietohelpthebereaved person move through the various stages, the latter model suggests that simply providingaspacefortheindividualtoexploreandreflectontheprocesstheyareengagedin,inacontainingenvironment,wouldbemorehelpful.

Ev idence to support the provis ion ofpsychological interventions in bereavement has been equivocal and suggests that not everyonewho has experienced the deathofa lovedonebenefits frombereavementcounselling54.However,thereisevidencethatthosewhohaveexperiencedbereavementinsudden,traumaticandstressfulcircumstancesaremostatriskofdevelopingcomplicatedgriefreactions and papers suggest that counsellors shouldfocustheireffortsonthissub-groupofthebereaved.Parentsofinfantswhodieonaneonatalunitcouldbedescribedasexperiencingtheirbereavementinsuchcircumstances.

Research on the efficacy of bereavementinterventions in neonatal care is similarly limited—however, there is evidence that parents valuesupportandfindithelpful23.Harveyetal(2008) point out that although the evidence forefficacymaybe limited thereareclearcompassionate and ethical reasons why such supportshouldbeoffered.

Verylittleinformationexistsintheliteratureon lactation suppression forwomenwhoarebreastfeedingatthetimepalliativecareis instituted.Practical support forwomenpreviouslybreastfeedingorexpressingwhoseinfanthasdiedorinwhomdeathisimminenthas been summarized by Moore and Catlin41.A protocol has been proposed which relies on engorgement(butnotpainfulengorgement)asastimulusforthesuppressionoflactation(Category4).Suppressionoflactationcouldalsoincludetheuseofmedicationssuchascabergoline, a dopamine D2 receptor agonist thatinhibitsprolactinsecretion,milkexpressionwithout emptying the breast completely, and milkdonation.

18

Recommendations for practice (Grade: E)

• Theprimaryprovidersofimmediateemotionalandpsychologicalsupporttofamiliesontheneonatalunitarefrontlinenursingandmedicalstaff—theyshouldbeempoweredthroughawarenessofthesupportavailable,toofferappropriatechoicestofamiliestailoredtotheirneeds.

• Parentsshouldbeinformedoftheavailabilityofsupport,butitmustbeparents’decisionsastowhethertheytakeuptheoffer.Thereissomeevidencethatthemostbenefitisrealisedbythosewhoactivelyrequestsupport.

• Staffshouldbeawarethatfamiliesmightshowtheirdistressindifferentways—theymaybetearful,withdrawn,short-temperedorangry.

• Somefamiliesmaybeadeptatcommunicatingthefullextentoftheirdistresswhereasothermay find their capacity to communicatediminishedintimesofstress.

• Families’needsforsupportvary.Somemaywishfrequentappointmentsimmediatelyfollowingthedeathofaninfant—othersmaywishforshorter,morespecificsupport,suchashowbesttosupportasibling.

• Parentswithasurvivingtwin/tripletrequirespecificbereavementsupportastheymaybecaringforanothersickbabyontheunitorevenahealthychildathome.

• Supportmaybeprovidedby a rangeofprofessionals,suchasaclinicalpsychologist,child psychotherapist, or counselling psychologist—what is important is that the professional providing support isknowledgeableandexperiencedinworkingwithparentswhohavehadaninfantonaneonatalunitandofspecificissuesregardingmultiple births, especially where there is a survivingco-sibling.

• Informationonanyfinancialsupportavailabletoassistwiththefuneralandtimetakenoutofworkshouldbeprovided.

• Informfamiliesof thenameof thestaffmember who will contact them and when, andprovidewritteninformationaboutthisandhow to access ongoing bereavement support, Providefurthersupportwherenecessaryifparentsexperiencesecondarylosses,suchasachangeintheirrelationship.

• Supportshouldbeofferedbytheneonatalteam for as long as required andwhenappropriaterefertoothersupportservices.

• ForotherorganisationsthatprovidesupportforparentsrefertoAppendix1.

• Informmothersoftheoptionsavailableforlactationsuppressionshouldthisberequired.

19

The guidance

4. What is good practice in relation to seeking consent for post mortem examination and organ donation in infants?


Thebesttimetobroachtheissueofpostmortemisaftertheinfant’sdeath15(Category4).Thereasonsparentsreportdecliningconsentforpostmortemexaminationarefearofdisfigurement,and that they have no questions to be answered38.Early liaison with a transplant coordinator, to establishfeasibility,isnecessaryiforgandonationis being considered20,15(Category4).


• Ifparentsraisetheissueofpostmortemexaminationthemselves,discussionbeforetheinfant’sdeathisacceptable.

• Apostmortemexaminationshouldbeofferedtoallparentsofinfantsthatdieevenifthecauseofdeathappearsobvious.Thismayidentifyunsuspectedproblems.Thepersontaking consent should be trained to do this and the parents provided with written information7.

• Ifthecauseofdeathisunclear,discusstheneedforapostmortemexaminationwiththerelevantauthority(Coroner/ProcuratorFiscal)includingdeathsathomeorthehospice.

• Someparentsmaywish todonate theirinfant’sorgans—itisimportanttoestablishifthisispossibleandifnot,thentoexplainwhythisisthecase.Donationofheartvalvesisusuallyconsideredforinfantswhosedeathisexpectedwithinaspecifictimeperiod.Thisispossibleonlyiftheinfantisabove37weeksgestationwithaweightof2.5kgandaboveand the valves must be harvested within 48 hoursofdeath.CurrentlytheonlyHeartValveBankretrievingheartvalvesfromneonatesistheOxfordHeartvalveBank.TheUnitedKingdomHospitalPolicyforOrganandTissueDonation(UKTransplant,April2003)referstoorgandonationfromanencephalicinfantsinthe event that a suitably matched recipient is waiting.Ifheartdonation,whichistheonlysuitableorganfordonationfromanencephalicinfantsisnotpossibletheoptionofheartvalvedonationmaybediscussedwiththeparents.ThistypeofdonationisrareintheUKandfurtherguidanceisawaited.

Case studies

Parentsmayhaveclearviewsthattheywouldliketodonateorganspostmortem.Itisimportantthattheseviewsarediscussedandinformationprovided.Currentlythereisnonationalguidance.

Postnatal decisionTheparentsofaterminfantwithhypoxic-ischaemicencephalopathyexpressedtheirwishbeforeintensivesupportwaswithdrawntodonatetheirinfant’sorgansifthiswaspossible.Heartvalveswereharvestedafterdeathinthehospitalmortuaryafterliaisonwiththenationaltransplantcoordinator

AntenatalAninfantbornat31weeksgestationwithThanatotrophicDysplasiawasunsuitablefordonationofheartvalvesalthoughtheparentsexpressedawishforthistotakeplaceduringtheantenatalperiod.Thiswasbecausetheinfantwaspretermandthebirthweightwaslessthan2.5kg.

Learning points: Knowledgeoftransplantfeasibilitycanfacilitateparents’wishestodonatetheirdyingbaby’sorgans.

20

5.Whatsupportisneededbystafftohelpthemmanage an infant receiving palliative care?

Summary of evidence

Counselling,debriefing,andemotionalsupportofstaffarehighlightedinguidancepublishedonneonatal palliative care15,20,65(Category2).Staffmayexperiencemoraldistressiftheyfeelunabletoadvocateforapatient’sinterestsbecauseofinstitutionalconstraintsoriftheyarenotinaccord with parent decisions15(Category4).


• Neonatalstaffshouldhaveaccesstoaclinicalpsychologistandprovidersofspiritualsupport.

• Staffshouldreceivetrainingintheprinciplesofpalliativecareandsensitivecommunicationwithparents.

• Allmembersofstaffwhatevertheirlevelofseniority should be included in discussions abouttheongoingcareoftheinfant,andindecisionsabouttheappropriatenessofcontinuingintensivesupport.

• Staffshouldbeoffereddebriefingafteradeath.Thismighttaketheformoffocusedreflectivepracticesessionsfacilitatedbyatrainedmemberofstafforexternalfacilitator.Thisisdistinctfromamoretraditionalmedicaldebrief inthat itallowsaspaceforteammemberstodevelopasharednarrativeofevents, appreciate practice that has gone well, andconsideralternativewaysthatfamiliesmightbesupported.

• Allstaffshouldbeallowedandsupportedtocareforfamilieswhohaveababyreceivingpalliative care, rather than allowing the expertisetobeconcentratedinasmallgroupofworkers.Inthiswayallstaffcanappreciatetheexperienceofthefamiliesaswellastheneedsandexperienceofthosethatcareforthem.

• Therearepapersthatsuggestthatcaringforbabiesattheend-of-lifeshouldbevoluntaryforstaff15andifstaffmembersfeelunabletocareforsuchinfantstheyshouldbeassignedtootherduties.TheGeneralMedicalCouncil(Section‘PersonalBeliefsandMedicalPractice’underGuidanceonGoodPractice)statesthatitisnotacceptabletooptoutoftreatingaparticularpatientorgroupsofpatientsbecauseofpersonalbeliefsorviewsaboutthem.TheNursingandMidwiferyCouncil’sCodeofConductintheUKstatesthatnursesshould not discriminate in any way against those forwhom they provide care. TheconsensuswithintheGDGisthatmembersofstaffwhoexpresstheirreluctancetocareforinfantsattheend-of-lifeshouldreceivesupportandtrainingtoenablethemtofulfilthisrole.

21

References

22

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References

25

Appendices

Appendix 1

Contact details for support groups

Appendix 2

Medications and dosages

Appendix 3

Quick Reference Guide

Appendix1

26

Contact details for support groups

Support Details Contact

AntenatalResultsandChoices(ARC)

Providessupportandinformationtoexpectantandbereavedparentsthroughoutandaftertheantenatalscreening.

02077137486 08450772290

[email protected]

www.arc-uk.org

Bliss(forbabiesborntoo soon, too small, too sick)

The national charity that supports babies born premature or sick and theirfamilies.

0500618140

[email protected]

www.bliss.org.uk

ChildBereavementUK

Supportsfamilieswhenachilddies, or when children are bereaved.

Provisionsincludetelephonesupport,onlineforums,informationsheetsforfamilies,how to support surviving siblings, professionaleducation.

0800 02 888 40

[email protected] [email protected]

www.childbereavement.org.uk

ChildDeathHelpline

Ahelplineforanyoneaffectedbythedeathofachildofanyage,frompre-birthtoadult,underanycircumstances, however recently orlongago.

0800282986

[email protected]

www.childdeathhelpline.org.uk

The Compassionate Friends

Anorganisationofbereavedparentsandtheirfamiliesofferingunderstanding, support and encouragementtoothersafterthedeathofachildorchildren.Theyalsooffersupport,adviceandinformationtootherrelatives,friendsandprofessionalswhoarehelpingthefamily.

08451232304

[email protected]

www.tcf.org.uk

Contact a Family

A national charity providing advice, informationandsupportforanyfamilywithadisabledchild,whateverthechild’scondition.

08088083555

www.cafamily.org.uk

[email protected]

Cruse Bereavement Care

Promotesthewell-beingofbereaved people and helps them understandtheirgriefandcopewiththeirloss.

0844 477 9400

[email protected]

www.cruse.org.uk

Multiple Births Foundation

Providessupportandadviceforfamilieswithtwinsormore.

02033133519

www.multiplebirths.org.uk

OrganDonation NationalTissueDonorReferralCentre (England and Wales) 08004320559

27

RainbowTrustChildren’sCharity

Providesemotionalandpracticalsupporttofamilieswhohaveachildwithalifethreateningorterminalillness.

01372363438

www.rainbowtrust.org.uk

Samaritans

Provideconfidentialnon-judgementalemotionalsupport,24hoursadayforpeoplewhoareexperiencingfeelingsofdistressordespair.

08457909090

www.samaritans.org

SANDS (Stillbirth and Neonatal Death Charity)

Offersparentssupportwhentheirbaby dies during pregnancy or afterbirth.Alsohaveinformationonpostmortemexaminations.

02074365881

[email protected]

www.uk-sands.org

Sibs

TheUKcharityforpeoplewhogrow up with a disabled brother or sister.Theysupportsiblingswhoare growing up or who have grown up with a brother or sister with any disability, long term chronic illness, orlifelimitingcondition.

01535645453

www.sibs.org.uk

TAMBA (Twins and Multiple Birth Association) Bereavement Support Group

Supportandadviceforfamilieswithtwinsormore.Thehelplineisstaffedbytrainedvolunteerswho are multiple birth parents themselves.

08001380509

[email protected]

www.tamba.org.uk

TCF Sibling Support

AprojectrunbyTheCompassionate Friends which providesnationwideself-helpsupportforpeoplewhohavesufferedthelossofabrotherorsister.

08451232304

www.tcfsiblingsupport.org.uk

TfSL(TogetherforShortLives)

TheUKcharitythatspeaksforallchildrenwithlife-threateningandlife-limitingconditionsandallwholoveandcareforthem.Providesdetailsofchildren’shospiceservices.

08451082201

www.togetherforshortlives.org.uk

Winston’sWish For children who have been bereaved.

08452030405

www.winstonswish.org.uk

BenefitsEnquiryLine0800 88 2200

www.makingcontact.org

Appendix2

28

Medications and dosages

Reference: BritishNationalFormularyforChildren(BNFc).BMJPublishingGroupLtd,RPSPublishing,RCPCHPublicationsLtd.

Thedrugdosesbelowareforneonatesunlessotherwiseindicatedinthecommentscolumn.RefertotheBNFcforinfantsolderthan1monthofage.OtherformulariesusedinpaediatricpalliativecareincludetheAssociationofPaediatricPalliativeMedicineMasterFormulary.AsthisguidanceisintendedforbabiesonneonatalunitstheBNFcisreferenced.

Drug Use Dosage Route Comments

Chloral hydrate Longtermsedation 20–30mg/kgupto50mg/kg4timesdaily Oral/rectal

Clonazepam Seizures Status epilepticus

100mcg/kgover 2 minutes, repeated after24hoursifrequired

Intravenousinjection

Diazepam Seizures1.25–2.5mgrepeatedafter5minutesifnecessary

Rectal

Domperidone Gastro-oesophagealrefluxandstasis

100–300mcg/kg 4–6timesdailybeforefeeds

Oral

Glycopyrroniumbromide

Controlofairwaysecretions and hyper-salivation

40–100mcg/kg 3–4timesdaily Oral Doseforchild

1 month–18 years

Hyoscinehydrobromide

Controlofairwaysecretions and hyper-salivation

250mcg(quarterofapatch to skin) every 72 hours

Transdermal patch applied to hairless areaofskinbehindear

Loperamide Diarrhoea

100–200mcg/kgtwicedaily30minutesbeforefeed.Increaseas necessary up to 2mg/kgindivideddoses

Doseforchild1 month–1 year

Midazolam Status epilepticus

300mcg/kgsingledose Buccal

150–200mcg/kg Intravenousinjection

1mcg/kg/min,increasing by 1mcg/kg/minevery15minutesuntilseizureiscontrolled.Maximumdose 5mcg/kg/min

Continuous intravenousinfusion

29


Morphine

Acutepain/postoperative

Premature infants: initially by intravenousinjectionoveratleast5min,25–50mcg/kg,thenby continuous infusion5mcg/kg/hradjustedaccordingtoresponse

Intravenousinjectionandinfusion

Neonate: initially by intravenous injectionoveratleast5min,50–100mcg/kg,then by continuous intravenousinjection10–20mcg/kg/hradjustedaccordingto response up to 40mcg/kg/hr.

Intravenousinjectionandinfusion

10mcg/kg/hr Subcutaneous infusion

Doseforinfant1–3months

Chronic pain

80mcg/kgevery4hoursadjustedaccording to response

Oral/rectal Doseforinfant1–12months

150–200mcg/kgevery4hoursadjustedaccording to response

Subcutaneous injection 1 month–2 years

Omeprazole Gastro-oesophagealreflux

700mcg/kgoncedailyorally,increasedifnecessaryafter7–14daysto1.4mg/kg.Some neonates may require up to 2.8mg/kgonceaday

Oral

ParacetamolPain

Pyrexia

Neonate 28–32 weeks postmenstrual age: 20mg/kgsingledose,then10–15mg/kgevery8–12hoursasnecessary.Maximum30mg/kgindivided doses

Oral

Neonate >32 weeks postmenstrual age: 20mg/kgsingledose,then10–15mg/kgevery6–8hoursasnecessary.Maximum60mg/kgdailyindivided doses

Oral

Neonate 28–32 weeks postmenstrual age: 20mg/kgsingledose,then15mg/kgevery 12 hours as necessary.Maximum30mg/kgindivideddoses

Rectal

Appendix2

30


ParaldehydeSeizures

Status epilepticus

0.4ml/kgassingledose,maximum0.5ml Rectal

PhenobarbitoneSeizures

Status epilepticus

20mg/kg Slow intravenous injection

Then:

2.5–5mg/kgoncedaily

Doseandfrequencyadjustedaccordingtoresponse

Oral/slowintravenousinjection

PhenytoinSeizures

Status epilepticus

Initially20mg/kgasloading dose, then 2.5–5mg/kgtwicedaily,adjustaccordingto response

Slowinjectionorinfusion

Ranitidine Gastro-oesophagealreflux

2mg/kg3timesdaily,maximum3mg/kg3times daily

Oral

0.5–1mg/kgevery6–8hours

Slow intravenous injection

31

Quick reference guide

1. Management of the infant once a decision to withdraw or withhold life-sustaining treatment has been made: Key principles

1.1 Process of withholding and withdrawing life-sustaining treatment

• Ensurebothparentsarepresentandhaveaface-to-facediscussioninaquietroomawayfromtheneonatalunitwherepossible.Givethemtheoptionofinvitingotherkeyfamilymembersoraclosefriendtobewiththem.

• Usingphrasessuchas“Ouraimistohelpyourbabyhaveapainfreepeacefuldeath”,“Wecannot cure your baby but we will always care forhim”,“Wewanttosupportyouthroughthisdifficulttime”mayhelp.

• Arrangeforaninterpretertobepresentifneeded—avoidfamilymembers,andespeciallychildreninterpretingwherepossible.

• Ensurethatparentshaveprivacy,adequatetime and opportunity to discuss their views andfeelingsandtoaskquestions.

• Enable the junior doctor and the nursecaringfortheinfanttobepresentduringthediscussion,sothattheyareawareoftheprocessinvolved,andgainexperience.

• Ifitisnecessarytotakesamplesoftissuebeforedeathinordertomakeadiagnosis,thisshouldbeclearlyexplainedtotheparents.Considerzygositytestinginthecaseofsamesextwinsandtriplets.OrganisationssuchastheMultipleBirthsFoundation(SeeAppendix1fordetails)canhelpwithzygositytesting.

• Agreeatimeandlocationforwithdrawaloflife-sustainingtreatmentwiththeparents.

• Explainwhatwillphysicallyhappentotheinfant,whattoexpectpractically,andifthelengthoftimetodeathisuncertain.

• Ifwithdrawaloflife-sustainingtreatmentislikelytoleadtoimmediatedeathexplainthattheinfantmaygaspandhavecolourchangestotheirfaceandbody.

• Askiftheparentswouldliketobepresentattheactualtimethatlife-sustainingtreatmentiswithdrawn.Bemindfulthattheymayprefernot to, and also that they may change their mind.Asktheparentswhethertheywouldlikesiblingsorfamilymemberstobewiththem.

• Askiftheywouldliketheirinfanttobedressedin anything special, or have particular requests suchasbathing,oranointing.

• Askiftheparentswouldliketoholdtheirinfant.

• Askiftheywouldlikephotostobetakenand invite parents to take handprints and footprints.Ifparentsdonotwantphotos,offertotakesometokeepinthemedicalrecords, in case they decide they would like thematalaterdate.Askparentsiftheywishto keep any items such as blankets, hats or any otheritemsthatwererelatedtothebaby’scare.

• Iftheinfantisoneofasetoftwins,tripletsorquads,wherepossibletakeaphotographofthebabiestogetherwiththefamily.Thiscouldbeincubatorsorcotsclosetogetherifthatistheonlywaytodothisiftheotherinfantisverysick.

• Ensurethenursewhoisallocatedtotheinfantandfamilydoesnothaveanotherinfanttocarefor.Asktheparentsiftheywouldlikethe nurse to be present behind the screen or intheroomwiththem—iftheypreferprivacyexplainhowtheycancallthenurseandadvisethathe/shewillreturnintermittently.

• Letparentsknowthatitispossiblefortheirbabytoremainwiththemafterdeathiftheyshouldwish.Ifapostmortemexaminationisto be carried out it is not advisable to keep thebodyoutsideofacoolroomormortuaryforlongerthan4-6hours.Parentsshouldbeinformedthatitispossibletoseetheirbabyafterthebodyhasbeentakentothemortuaryandfollowingthepostmortem.Itmaybepossibleforthebodytobetransferredtoacoolroominachildren’shospice.

• Itmaybepossibleforthefamilytotaketheinfanthomeafterdeathuntilthefuneral.Pleaserefertolocalguidelinesandpolicies.

• Considerprovidingwritteninformation.

Appendix3

Appendix3

32

1.2 Pain relief

• All infants receivingpalliativecaremusthaveconsiderationgiventoreliefofpainanddiscomfort.This includesthetypeofmedication,thedose,routeofadministrationandthelikelydurationofneed—considerationshouldbegiventotheuseofformaltoolstoassesspain.

• Shouldtheinfanthaveintravenousaccessinplace,thisrouteispreferableintheimmediateperiodafterdiscontinuationoflife-sustainingcare.

• Ifan infant isalreadyreceivinganalgesicmedication this shouldbecontinued—ifopiates are to be initiated, an initial bolus doseshouldbegivenbeforecommencingan infusionsothatadequateanalgesia isachievedpromptly.Thedosemaybeincreasedor reduced depending on ongoing assessment ofdistressanddevelopmentoftolerance—ifrelevant, parents should be made aware that opiates while relieving pain and distress also suppress respiratory drive and may hasten death.

• Iftheintravenousrouteisnotavailableandadequate analgesia cannot be achieved through oral medication, a subcutaneous infusionmaybenecessary. Intramuscularmedicationisneverappropriate.Forrapidsymptom management, buccal medication can be considered, usually in addition to longer acting medication via the enteral route or subcutaneousinfusion.

• Non-narcoticanalgesiasuchasparacetamolandoralsucrosemaybeusedforlessseverepainorincombinationwithnarcoticanalgesics.

• RefertoAppendix2foralistofsuggestedmedicationanddoses.

• Non pharmacological interventions toreducepainanddiscomfortshouldbeusedinconjunctionwithanalgesicmedications—these include a calm environment with minimal noiseandlightstimuli,non-nutritivesuckingwithapacifier,musicandpositioningwitharmsandlegsflexedclosetothetrunkusingablanketorrollsandmassage.

• Assisttheparentstoholdtheirbaby.

• Supportcontinuedsucklingatthebreastifthemotherwishes.

1.3 Other symptom control

• Symptomssuchasseizuresanddifficultywithsecretions should be assessed and treated appropriately.


1.4 Physiological monitoring

• Invasivetechniquessuchasinvasivebloodpressuremonitoringshouldbediscontinued.Cardiac and saturation monitors should also be disconnected prior to disconnecting mechanicalventilation.

• Theinfantshouldbemonitoredforphysicalsigns that suggest discomfort (crying,whimpering,panting,tachycardia,excessivesecretions,drymucousmembranes).

• Bloodtestsandbloodgasmeasurementsshouldnolongerbecarriedout.

• Once life-sustaining support has beenwithdrawnintermittentphysicalexaminationwithauscultationoftheheartrateshouldbecontinuedbythenurseordoctorcaringfortheinfant.

1.5 Fluids and nutrition

• Thegoaloftreatmentiscomfort,nottheprovisionofnutrition.

• Inthoseinfantsabletotoleratemilkfeedstheir ongoing provision should be determined by their clinical condition and the cues that the infantdemonstrates.

• Oralnutritionshouldonlybewithheld ifitisfeltthatprovidingitwillcausepainordiscomfort.

• Ifvomitingisaproblem,thevolumeofenteralfeedsshouldbereducedappropriately.

• Itmaybeappropriatetoallowtheinfanttosuckleatthebreastifabletodoso.

• Inthoseinfantsinwhomthedurationbetweenthewithdrawaloflife-sustainingcareanddeathisexpectedtobeshort,itisreasonabletoceaseallfeedsifitisfeltfeedingcouldcause distress, and to discontinue intravenous hydrationandnutrition.

33

• Ifdeathdoesnotfollowthewithdrawaloflife-sustainingcare,or ifpalliativecare isinstitutedinaninfantwheretheprovisionofhydration and nutrition is the sole intervention maintaininglife,thenconsideringstoppingthisisappropriateonlyiftodosowillnotresultinhungerordistresstotheinfant.Anysuchdecision should involve discussion with the parents.

• Any decision to continue to provideintravenous nutrition and hydration should betakeninthelightofthepainanddiscomforttotheinfantofcontinuingtoprovidefluidandnutrition(egneedforcentralorperipheralvenousaccess).

• Iftheinfantisdischargedhomeortoahospiceforpalliativecare,arrangementstocontinueordiscontinuemedicallyprovidedfluidsandnutrition will need to be made in advance and theparentssupportedaccordingly.

• Gastrostomy,nasogastricandjejunostomyfeedingwillalsorequireparenttrainingandprofessionalcommunitysupport.

• Thebenefitsofsurgerytoallowfeedingeithervia the intravenous route or via the enteral route must be balanced against the burden oftheinterventionandtheprolongationofdeath.

• Refertothealgorithmundersection1.5.

1.6 Ventilation and oxygen

• Explaintotheparentswhatisgoingtohappenand when it will happen and which member ofstaffwillbepresent.

• Explainthatdeathmaynotbeimmediateandthattheinfantmaysurviveforaprolongedperiod.

• Explainhowtheinfantwillbecaredfor.

• Decideinadvancewhichmemberofstaffwillberesponsiblefortheactualremovaloftheendotrachealtube/turningtheventilatoroff.

• Aspiratethenasogastrictubeandalsoconsidernotfeedingtheinfantjustpriortoextubation.

• Turnoffthealarmsoftheventilatorandmonitorspriortodisconnectingthese.

• Suctiontheendotrachealtubebeforeremoval.

• Givetheparentsthechoiceofbeingpresentandholdingtheirinfant.

• Withdrawal of less invasive forms orrespiratory support such as nasal continuous positive airway pressure and nasal cannulae oxygenmaybeappropriateifababyisdyingandcontinuedprovisionofrespiratorysupportonlyservestoprolongdeath.

1.7 Location of care

• Theprinciplesofpalliativecareshouldbeconsistentlyappliedregardlessoflocation.

• Thebestavailablespacewithprivacyandcomfortforparentsandfamilyshouldbeused.

• Discusswithparentsiftheyprefertostayintheneonatalunitwithascreenforprivacyormovetoasideroomifavailable.

• Ifthemotherisreceivingcareherself(forexampleafteracaesareansection)considerproviding palliative care on the postnatal wards in a private area that does not compromise her own care and provide nursing supportfortheinfant.

• Considertransfertoahospice,especiallyifthedurationbetweenthewithdrawaloflife-sustainingtreatmentanddeathisexpectedtobe days rather than hours—ensure this option isavailablebeforediscussingitwiththeparents.

• Whenaninfantistransferredtoahospicesupported by a palliative care team, it is recommended that there is a designated senior neonatal doctor with whom the palliative careteamcanliaiseafterdischarge.Thisisparticularly important should there be a change intheinfant’sconditionafterdischarge.

• Considerthepossibilityoftransferhomeortoahospitalclosertohome,priortoextubation.Thefamilymayhaveestablishedrelationshipswithstaffatthelocalhospitalormaywishtohavefamilynearby.Thiscanonlybedoneifthereissufficientsupportavailableatthechosenlocationtosupportextubationandprovideongoingcare.

• Liaisewithcommunitypalliativecareservicesand the transport team to ensure services and supportcanbeprovidedbeforediscussingoptionswithfamilies.

• Tailorcaretotheindividualneedsoftheinfantandthefamily,butberealistic.

Appendix3

34

• Ifadecisiontoinstitutepalliativecarehasbeenmadeintheantenatalperiodconsiderofferingparentstheopportunitytovisitahospice.

• Throughoutthisprocessitisimportanttocommunicateregularlycurrentinformationwith other specialties that may be hospital orcommunitybased.ThiscouldincludeGPs,health visitors, community nursing teams and maternityservicesinvolvedinthecareoftheinfantandwhocansupportthefamily.

2. Conflictsanddecisionmaking:Keyprinciples

2.1Conflictsbetweenparentsandstaff

• Allowparentstimetoconsiderthedecisionandarrangefortheseniorcliniciantoseethemagainaftertheinitialmeetinginwhichthe decision to institute palliative care was reached.

• Reassure them thatwithdrawal of life-sustaining treatment does not mean that care oftheirinfantwillbewithdrawnbutratherthattherewillbeashiftinthefocusofcare.Staffshouldnotappearjudgmentalshouldaparentindicatewishtocontinuelife-sustainingsupport.

• Ifrelevant,explainthatlifesupporttechnologyisnotinitselfacurativetreatmentanddoesnotchangethebaby’sunderlyingcondition.

• Explorethereasonsbehindtheparents’viewsofthesituation.

• Suggestparentsmightfindithelpfultodiscusstheirfeelingswithfamily,friendsorspiritual/religiousfigures—offeraccesstohospitalreligiousrepresentativesifappropriate.

• Offerparentsasecondopinioneitherwithanother senior clinician within the team or outsidethehospitalofcare.

• Consider approaching a clinical ethicscommitteeifaccesstooneexistsormedicalmediationservicesifappropriate.

• Whileawaitingtheoutcomeoftheseactions,provideparentalreassurancethatthecareoftheirinfantwillcontinueunchanged.

• Staffshouldnotappearjudgmentalaboutaparent’sdecisiontocontinuelife-sustainingsupport.

2.2Conflictsamongmembersofstaff

• Allmembersofstaffwhatevertheirlevelofseniority should be included in discussions abouttheongoingcareoftheinfantandindecisionsaboutappropriatenessofcontinuinglife-sustainingsupport—theweightoftheopinionofeachmemberoftheclinicalteamwilldependon theirexperiencebut theultimate decision rests with the senior clinician incharge.

• Regular, scheduled and well attendedunit meetings, psychosocial meetings and multidisciplinary case discussions promote team cohesiveness, and healthy team functioning,andarekeymeansofreducingconflictbetweenstaff,andreducingthepotentialforescalation.

• Anexternalfacilitatormaybehelpfulwherethereissignificantconflict.

• Neonatalunitsshouldhaveaccesstoaclinicalpsychologistandstaffshouldbeawareofothersourcesofsupport(Appendix1).

• Reflectivepracticesessionsfacilitatedbyatrainedmemberofstaffcanbehelpfulbothbeforeandafteradecisiontoinstitutepalliativecarehasbeenmade—staffshouldbeoffereddebriefingafterthedeath.

• Chaplaincy/multi-faithchaplaincy/spiritualcareteammemberscanprovidesupportforstaffespeciallywhenstrongbeliefsareafactor.

3. Support for parents and families: Key principles

3.1 Religious, pastoral and spiritual support

• Staffshouldassessthespiritualandreligiousneedsofthefamilyandifappropriate,refertothechaplaincy/multi-faithchaplaincy/spiritualcareteamoraskifthefamilywouldliketohavetheir own religious or spiritual representative contacted.

• The family’s religion should be clearlydocumentedaspartoftheadmissionhistorytakingprocess.

• Staffshouldbeawarethateachfamily isindividualandwillhavedifferentbeliefs,andculturalandreligiousbackgrounds.

• Berespectfulofthefamily’sreligiousbeliefsandrituals. Ifyouareunsureofritualsorcorrectprocedures,askthefamily.

• Bemindfulthatthemotherandthefathermayhavedifferentreligiousorculturalbeliefs.

• Whilereasonabletoconsiderofferingfamilieswhodescribethemselvesas‘notreligious’or‘non-practicing’theofferofaprayerorablessing,theirviewsshouldberespected.

3.2 Psychological and emotional support

• Theprimaryprovidersofimmediateemotionalandpsychologicalsupporttofamiliesontheneonatalunitarefrontlinenursingandmedicalstaff—theyshouldbeempoweredthroughawarenessofthesupportavailable,toofferappropriatechoicestofamiliestailoredtotheirneeds.

• Parentsshouldbeinformedoftheavailabilityofsupport,butitmustbeparents’decisionsastowhethertheytakeuptheoffer.Thereissomeevidencethatthemostbenefitisrealisedbythosewhoactivelyrequestsupport.

• Staffshouldbeawarethatfamiliesmightshowtheirdistressindifferentways—theymaybetearful,withdrawn,short-temperedorangry.

• Somefamiliesmaybeadeptatcommunicatingthefullextentoftheirdistresswhereasothermay find their capacity to communicatediminishedintimesofstress.

• Families’needsforsupportvary.Somemaywishfrequentappointmentsimmediatelyfollowingthedeathofaninfant—othersmaywishforshorter,morespecificsupport,suchashowbesttosupportasibling.

• Parentswithasurvivingtwin/tripletrequirespecificbereavementsupportastheymaybecaringforanothersickbabyontheunitorevenahealthychildathome.

• Supportmaybeprovidedby a rangeofprofessionals,suchasaclinicalpsychologist,child psychotherapist, or counselling psychologist—what is important is that the professional providing support isknowledgeableandexperiencedinworkingwithparentswhohavehadaninfantonaneonatalunitandofspecificissuesregardingmultiple births, especially where there is a survivingco-sibling.

• Informationonanyfinancialsupportavailabletoassistwiththefuneralandtimetakenoutofworkshouldbeprovided.

• Informfamiliesof thenameof thestaffmember who will contact them and when, andprovidewritteninformationaboutthisandhow to access on going bereavement support, Providefurthersupportwherenecessaryifparentsexperiencesecondarylosses,suchasachangeintheirrelationship.

• Supportshouldbeofferedbytheneonatalteam for as long as required andwhenappropriaterefertoothersupportservices.

• ForotherorganisationsthatprovidesupportforparentsrefertoAppendix1.

• Informmothersoftheoptionsavailableforlactationsuppressionshouldthisberequired.

4. Post mortem examinations and organ donation: Key principles

• Ifparentsraisetheissueofpostmortemexaminationthemselves,discussionbeforetheinfant’sdeathisacceptable.

• Apostmortemexaminationshouldbeofferedtoallparentsofinfantsthatdieevenifthecauseofdeathisobvious.Thisallowsthedetectionofunsuspectedproblems.Theperson taking consent should be trained to do this and the parents provided with written information.

• Ifthecauseofdeathisunclear,discusstheneedforapostmortemexaminationwiththerelevantauthority(Coroner/Procurator).

• Someparentsmaywish todonate theirinfant’sorgans—itisimportanttoestablishifthisispossibleandifnot,thentoexplainwhythisisthecase.Donationofheartvalvesisusuallyconsideredforinfantswhosedeathisexpectedwithinaspecifictimeperiod.Thisispossibleonlyiftheinfantisabove37weeksgestationwithaweightof2.5kgandaboveand the valves must be harvested within 48 hoursofdeath.CurrentlytheonlyHeartValveBankretrievingheartvalvesfromneonatesistheOxfordHeartvalveBank.TheUnitedKingdomHospitalPolicyforOrganandTissueDonation(UKTransplant,April2003)referstoorgandonationfromanencephalicinfantsinthe event that a suitably matched recipient is waiting.Ifheartdonation,whichistheonlysuitableorganfordonationfromanencephalicinfantsisnotpossibletheoptionofheartvalvedonationmaybediscussedwiththeparents.ThistypeofdonationisrareintheUKandfurtherguidanceisawaited.

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Appendix3

5.Staffsupport:Keyprinciples

• Neonatalstaffshouldhaveaccesstoaclinicalpsychologistandprovidersofspiritualcare.

• Staffshouldreceivetrainingintheprinciplesofpalliativecareandsensitivecommunicationwithparents.

• Allmembersofstaffwhatevertheirlevelofseniority should be included in any discussions abouttheongoingcareoftheinfantandindecisionsabouttheappropriatenessofcontinuingintensivesupport.

• Staffshouldbeoffereddebriefingafteradeath.Thedebriefingcouldtaketheformof focused reflective practice sessionsfacilitatedbyatrainedmemberofstafforexternalfacilitator.Thisisdistinctfromamoretraditionalmedicaldebriefinthatitallowsaspaceforteammemberstodevelopasharednarrativeofevents,appreciatepracticethathas gone well, and consider alternative ways thatfamiliesmightbesupported.

• Allstaffshouldbeallowedandsupportedtocareforfamilieswhohaveababyreceivingpalliative care, rather than allowing the expertisetobeconcentratedinasmallgroupofworkers.Inthiswayallstaffcanappreciatetheexperienceofthefamiliesaswellastheneedsandexperienceofthosethatcareforthem.

• Therearepapersthatsuggestthatcaringforbabiesattheend-of-lifeshouldbevoluntaryforstaffandifstaffmembersfeelunabletocareforsuchinfantstheyshouldbeassignedtootherduties.TheGeneralMedicalCouncil(Section‘PersonalBeliefsandMedicalPractice’underGuidanceonGoodPractice)statesthatitisnotacceptabletooptoutoftreatingaparticularpatientorgroupsofpatientsbecauseofpersonalbeliefsorviewsaboutthem.TheNursingandMidwiferyCouncil’sCodeofConductintheUKstatesthatnursesshould not discriminate in any way against those forwhom they provide care. TheconsensuswithintheGDGisthatmembersofstaffwhoexpresstheirreluctancetocareforinfantsattheend-of-lifeshouldreceivesupportandtrainingtoenablethemtofulfilthisrole.

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