PediatricPalliativeCare

BrittanyKelly,CPNPMGHfC PediatricPalliativeCare

Agenda

• PhilosophyofPediatricPalliativeCare• Understandingcarepoints inpediatricneurology• Seriouscommunicationtools• Usefullanguagewhenthenewsisbad• Usefulexperiencefromotherpediatricspecialties• Resourcesforsymptommanagement• Meaningmakingforfamilyandprovider• Templateforafamily-centeredreviewofautopsyresults

TheFirstQuestion

Whatispalliativecare?

TheFirstQuestionCharonandtheRiverStyx

Hospice

Palliativecare….

Theartandscienceoflesseningphysical,psychosocial,emotional,andexistentialsuffering.

ACallforChange:RecommendationstoImprovetheCareofChildrenLivingwithLife-ThreateningConditions

Whoiseligibleforpalliativecare?

Anychildnotexpectedtosurvivetoadulthood

Andwhen?

Fromtimeofdiagnosis

AmericanAcademyofPediatrics

Pediatric palliative care puts all our medical

knowledge and technology

to the service of enhancing

a child’s joy, autonomy, comfort,

safety, and meaning.

Family-centered

Interdisciplinary

Goaldirected

Basedonpatientexperience

Callsforcreativereframing

ConsiderinvolvingPallcare…•Whenachildfacesalifespanlimitingcondition

•Whensymptomsareinterferingwithqualityoflife

•Whenyourecognizetherearesomethingsyoucan’tfix

•Whenachangeinhealthstatuspromptsareviewandpotentialreprioritizingofgoals

ConsiderinvolvingPallcare…

•Whenthefamilyorhealthcareteamwouldlikehelpinterpretinggoalsorchoices

•Whenthefamilyorhealthcareteamwouldlikethespacetoconsidergoalsotherthancurativewithouthavingthesensethattheyaregivingup

Palliative care

lets the child’s spirit

shine through..

Carepoints:from“Cameron’sArc”

Carepoints arejuncturesincarewhen:• Anunmetneedisrecognized• Theneedismetbytimelyprovisionoftheappropriateresources

Carepoints:from“Cameron’sArc”

Someexamples:• Breakingthenewsofadiagnosis• Buildingateamaroundachildwithalifespanlimitingcondition• Discussinglife-extendingtreatments• Givinganticipatoryguidanceaboutendoflifecare

Carepoints:Deliveringthediagnosis

• Beconsciousofthewaitingperiodofuncertainty• Describebeforehandwhatwillhappenatthemeeting• Askfamilywhomtheywouldlikepresent• Understandthetempoofinformationflow,for1/3ofparentslessthan50%retention• Prepareyourself--whatmakesittolerableforyouwhenyouaregivingwhatfeelslikea“deathsentence”

SPIKESTool

1.Setting

Findaquietlocation,privateifpossibleInvitetheimportantpeopletobepresentHavetissuesavailableHaveenoughchairsTurnofftheringeronyourphone/pager

2.Perception – whatthepatientknowsalready

“Tellmewhatyouunderstandaboutyourillness.”“Whathavetheotherdoctorstoldyouaboutyourillness?”Lookforknowledgeandemotionalinformationwhilethepatientresponds

3.Invitation – informationsharingpreferences

“Woulditbeokayformetodiscusstheresultsofyourtestswithyounow?”“Howdoyouprefertodiscussmedicalinformationinyourfamily?”“Somepeoplepreferaglobalpictureofwhatishappeningandotherslikeallthedetails,whatdoyouprefer?”

http://vitaltalk.org/guides/serious-news/

SPIKESTool

4.Knowledge – givetheinformation

Giveawarning…“Ihavesomethingseriousweneedtodiscuss”Avoidmedicaljargon.Sayitsimplyandstop.(e.g.“Yourcancerhasspreadtoyourliver.Itisgettingworsedespiteourtreatments.”)

5.Empathy – respondtoemotionWaitquietlyforthepatient.“Iknowthisisnotwhatyouexpectedtoheartoday.”“Thisisverydifficultnews.”

6.Summary – discussnextstepsandfollowupplan

“We’vetalkedaboutalotofthingstoday,canyoupleasetellmewhatyouunderstand.”“Let’ssetupafollow-upappointment.”

http://vitaltalk.org/guides/serious-news/

BestCase/WorstCaseTool

Kruser,J.M.,Nabozny,M.J.,Steffens,N.M.,Brasel,K.J.,Campbell,T.C.,Gaines,M.E.,&Schwarze,M.L.(2015).“BestCase/WorstCase”:Qualitativeevaluationofanovelcommunicationtoolfordifficultin-the-momentsurgicaldecisions. JournaloftheAmericanGeriatricsSociety, 63(9),1805–1811.http://doi.org/10.1111/jgs.13615

ExperiencefromOtherSpecialties

• Oncology: The Day One Talk, Mack and Grier

• Neonatology: The neonatal diagnosis experience, Skotko

WaystoImproveParentExperiencewithNeonatalDiagnosis

Birthmotherinformed:

• Byaphysician• Assoonaspossible,exceptincasesofmaternalillhealth• Withthepartnerpresent• Inaprivateplace• Withtheinfantpresent

Continued…

• Withprovisionofaprivateplacefortheparentsdirectlyaftertheconversation• Withtheindicationthatafollow-upinterviewwiththepediatricianwouldbearranged24hourslater• Withasmuchtimeasneededforquestions• Withtheindicationthataspecialistwouldtalktotheparentsagainassoonastheywanted

Skotko adds….

• Abilitytoconnectwithotherfamilies,website,resources• Uptodateinformation• Positivecomments• Beawareofdifferencesinproviders’views

DifferentProviderResponses

• “HavingababywithDSisamother’sworstnightmare:”L&Dnursetothemother• “HavingababywithDSislikeadeathinthefamily:”Socialworkertothefather• “Thebabyisfine,buthehasDSandhislowApgars areduetoacardiacdefect”DRanesthesiologisttothefamilyoutside

Carepoints:Buildingtheteam

• Line up specialists—pulmonary, GI, social service, physiatry, OT/PT, pallcare• Identify resources, other families, websites, organizations• Using the language of teambuilding— “we” not “you”

Carepoints: Determiningthevaluesthatwillguidecare

• Envisioning a full life for the child• Anticipate likely events beforehand, so they can be discussed as

“what ifs”• Imagining a good death• Hope for the best, plan for the worst

UsefulLanguageWhentheNewsisBad

• Wishing• Hoping• Worries• Whatifs

FamiliesasExperts

• FamiliesofCLLNCbecometheexperts,notonlyintheirchild,butoftenintherareconditionthatafflictstheirchild• Theyfrequentlyhavemasteredahugenumberofdetailsandmanageabewilderingarrayofmedications,schedules,personnel• Comingtothehospitalisterrifying(“weknowmorethanthehospitalstaffdo”)• Comingtothehospitalislossofcontrol• Comingtothehospitalmaybedecrementincare

Resourcesformanagementofcommonsymptoms

• PCNAvolume2007• Websites• Frameshiftingoals:supportfeedinggoalsthatarerealisticandcompassionate• “ALifewithGrace:CaringforChildrenWhoHaveSevereNeurologicalImpairment”byJulieM.Hauer,M.D.

Waysthattheneurologistaddsmeaning…

• Validatingthepersonhoodofthechild,eventheneurologicallydevastatedchild• Bearingwitnesstothesufferingenduredbythefamily,respectingtheirgoalsofcare• Recognizingcarepoints asanopportunitytodevelopadeeperbond

Meaningmaking…

• Tissuebankingandautopsyinformationregardingcontributiontoknowledge• Continuedcontactafterthedeathofthechild,reflectingwithfamilyonwhatcareofthatchildhasmeanttoyou

Templateforautopsyreview

• Medicalfacts—theseareoftenwhatwearemostfluentinandcomfortablewith• WhatshouldIknowtoprotecttherestofmyfamily• WhatshouldIcallittothecasualfriendoracquaintance• WhatshouldIcallittothemedicalprovider

Templateforautopsyreview

• Could I have done anything to prevent the condition• Could we have done anything to prevent the child’s death• How will this information help other children and families• Offer a written copy, and repeat visit to address any concerns

raised by later readings of it

Some“must-sees”forthePediatricNeurologist

• Cameron’s Arc• Welcome to Holland• The Day One Talk• PCNA Volume on pallcare• Irritability

• Courageous Parents Network

Even if cure is not possible,..healing is..

ThankYou