兒童臨終關(guān)懷 Palliative Care for children CAPA課件

PediatricPalliativeCare2008LynnMeister,MDVitasInnovativeHospiceCareWHODefinitionofPalliativeCarePalliativecareistheactivetotalcareofpatientswhosediseaseisnotresponsivetocurativetreatment.Controlofpain,orothersymptoms,andofpsychological,socialandspiritualproblemsisparamount.Thegoalofpalliativecareisachievementofthebestpossiblequalityoflifeforpatientsandtheirfamilies.Manyaspectsofpalliativecarearealsoapplicableearlierinthecourseoftheillness,inconjunctionwithanticancertreatment.PalliativeCare…AffirmslifeandregardsdyingasanormalprocessNeitherhastensnorpostponesdeathProvidesrelieffrompainandotherdistressingsymptomsIntegratesthepsychologicalandspiritualaspectsofpatientcareOffersasupportsystemtohelppatientsliveasactivelyaspossibleuntildeathOffersasupportsystemtohelpthefamilycopeduringthepatient’sillnessandintheirownbereavement（喪親）PalliativeCarePalliativecareistheartandscienceofchild-focused,family-oriented,relationship-centeredmedicalcareaimedatenhancingqualityoflifeandattendingtosuffering.-HimmelsteinPalliativeCarePalliativecarestrivestorelievepainandothersymptomsofsuffering,butalsofocusesonthespiritual,emotional,psychological,socialandphysicalneedsofthepatientandhisfamily.BasicPrinciplesofPalliativeCareThechildandfamilyarethecenterofcareThegoalistoimprovequalityoflifeEachchildandfamilyisuniqueCareisdeliveredbyaninterdisciplinaryteamCareiscoordinatedTeamisalwaysavailabletofamiliesBasicPrinciplesofPalliativeCareCaregiversupportiscrucialRespitecareisessentialBereavementcareshouldbeprovidedforaslongasneededUSDeathsbyCauseandAge,1979-1997

CauseOfDeathNumber(%)ofDeathsNumber(%)ofDeathsNumber(%)ofDeathsNumber(%)ofDeaths<1year1-9years10-24yearsTotalNon-cancerChronicCondition175319(24.6)43389(20.0)57286(7.0)275994(15.8)Cancer3058(0.4)24114(11.2)52108(6.3)79280(4.5)Injury24006(3.4)100881(46.5)620790(75.6)745677(42.5)Othercauses511651(71.6)48358(22.3)91360(11.1)651369(37.2)Total714034(100)216742(100)821544(100)1752320(100)Feudtneretal.Pediatrics2001Physician(In)ExperiencewithDyingChildrenResults:TrialandError92%FromColleaguesinclinicalpractice82%Fromrolemodelsduringresidency/fellowship65%Formalcourses10%HistoryofEndofLifeCare103parentsofchildrenwhodiedofcancerbetween1990and1997atCHB/DFCIwereinterviewed89%reportedthattheirchildrensuffered“alot”or“agreatdeal”intheirlastmonthoflifeMostcommonsymptomswere:PainFatigueDyspneaConclusion:Greaterattentionmustbepaidtopalliativecareforchildrenwhoaredying Wolfe,JetalNEJM2000CurrentStatusofEndofLifeCareParentsof119childrenwhodiedofcanceratCHB/DFCIbetween1997-2004surveyedHospicediscussionsoccurredmoreoftenandearlierDNRorderswrittenearlierFewerdeathsinICUsorhospitalsParentsreportedlesschildsufferingfrompainanddyspneaParentsfeltmorepreparedfordeathConclusion:Childrendyingofcancerarereceivingcarethatismoreconsistentwithoptimalpalliativecare-WolfeJetalJCO2008AssessmentandPlanningPhysicalconcerns-addresspainandnon-painsymptomswithpharmacologicalandnon-pharmacologicaltreatmentplanPsychosocialconcerns-discussfears,coping,communication,previousexperienceswithdeath,resourcesforbereavementSpiritualconcerns-reviewfamiliesbeliefsAdvanceCarePlanning-identifydecisionmakers,provideinformationonillness,establishgoalsofcare,makeendoflifeplansPracticalconcerns-identifyhealthcareteamcoordinator,locationofcare,planforhome/schoolenvironment,ordermedicalequipment,addressfinancialconcernsPainAssessmentinChildrenQ-QuestionthechildU-UsepainratingscalesE-Evaluatebehaviorandphysiological changesS-Secureparents’involvementT-TakethecauseofpainintoaccountT-TakeactionandevaluateresultsBehavioralIndicatorsofPainIrritability/restlessnessChangeinsleeppatternsLossofappetite/changeinfeedingpatternsInconsolabilityVariationincryingpatternRepetitivemovements(headbanging,rocking)SymptomManagementPain:AssessmentTreatmentNon-opioidsandopioidsSide-effectsBarriersAdjuvantOthertypesofpainOthersymptomsWorldHealthOrganization

AnalgesicSteps1.Non-opioid+/-adjuvantPersistentpain2.Weakopioid+/-nonopioid+/-adjuvantPersistentPain3.Strongopioid+/-nonopioid+/-adjuvantFreedomfromcancerpainPainWeakOpioidsCodeine1-1.5mg/kgPOevery4hoursOpioidsLong-acting:Methadone(liquid/tabs)MSContin(tabs)Oxycontin(tabs)Fentanyl(tabs/patch/lollypops)Short-acting:Morphine(elixir,tabs,IV,SC)Hydromorphone(tabs)Oxycodone(liquid/tabs)LocalControl(painteam)CommonOpioidSideEffectsSedationImproveswithtimePsychostimulant:methylphenidateNauseaOndansetronUrinaryretentionChangeofopioid,crede,catheterConstipationDocusate/Sennaimmediately,fluids,bulk

PruritisAntihistamineSweatingIntractablesideeffects?ConsiderachangetoalternateopioidorrotatingopioidsNaloxoneBarrierstoEffectivePainManagementFearofaddictionSymbolicmeaningof“morphinedrip”Dislikeofalteredconsciousness/drowsinessFearofothersideeffects-respiratorydepressionFearofshorteninglifeKnowledgedeficitRespiratoryDepressionPrincipleofDoubleEffect–Effectsthatwouldbemorallywrongifcausedintentionallyarepermissibleifforeseenbutunintended.Doesitapply?Riskofrespiratorydepressionisgreatestwhenopioidsarefirstbegun-tolerancetothesedativeandrespiratorydepressanteffectsdevelopoverthefirstfewdaysPainactsasantagonisttorespiratorydepressionPropertreatmentofpainmayactuallyprolonglife(ManfrediNEJM1998),andcontributetoanenhancedqualityoflife(JAMA,1995)OtherTypesofPainNeuropathicpainMayrequiremassiveopioidinfusionsRx:Methadone,Gabapentin,tricyclicantidepressantsBonepainCoxIIinhibitorcorticosteroidsbisphosphonatesOtherSymptoms-NeurodegenerativeImmobilityFeedingdifficultyFailingspeechGERefluxIncontinence/ConstipationMentaldeclineSeizuresMusclespasmContracturesPressuresoresManagingrespiratorysecretionsRecurrentinfectionsMalnutritionandDehydrationThefundamentalresponsibilityofparentsistonourishchildren-itmaybeimpossibleforsometowithdrawThegoalofnutritionandfluidmanagementshouldbetoalleviatehungerandthirst,toreduceanxiety,topreservesocialaspectsofmealtimesSupplementalfluidsandnutritioncancausediscomfortFatigueEtiology:DiseaseprogressionAnemiaMalnutritionSleepdisturbanceMedicationsideeffectsTreattoimprovequalityoflifeDepressionandAnxiety103parentsofchildrenwhodiedofcancerbetween1990and1997atCHB/DFCIwereaskediftheirchildrensufferedintheirlastmonthoflife53%ofthechildrenhadlittleornofun29%hadsignificantanxiety61%hadsignificantsadness63%wereoftennotcalmorpeaceful21%wereoftenafraidWemustaddresstheseissuesWolfeetalNEJM2000PsychosocialIssuesChildren’sconceptsofdeathatdifferentagesnecessitatedifferentapproachesExplainingdeathtochildrenConceptsofLifeandDeathInfant/toddler:Separationissues-deathmaybeunderstoodasseparationfromparents,lossofparentscomfort.Naturalfearsaboutbeingleftalone,strangers,pain.Intervention–providemaximumphysicalcomfortthroughexposuretofamiliarpersons,consistency,favoritetoys/objectsPre-school-agechild(3-5years):Separation,autonomy,independence,guilt,concreteandmagicalthinking-expansionofdeathconcepttoincludelossoflovingandprotectiveobject.Deathisatemporarydeparture,reversible,magicalthinking.Intervention–minimizeseparationfromparents,correctperceptionsofillnessaspunishment,assuageguilt,usepreciselanguage(ex.Notusingtheword“sleep”whendiscussinganimpendingdeath)ConceptsofLifeandDeath-2School-agechild(6-11years):Appreciationofremovalfromonekindofphysicalexistencetoanother.Beginningtounderstandthatdeathispermanent.Deathassociatedwithfearofseparationandguilt.Intervention–evaluatefearsofabandonment,betruthful,providedetailsifasked,allowchildtoparticipateindecisionmakingAdolescent:Independencevs.dependence,sexuality,isolation,anger,withdrawal,bodyimage-Decisionmakingrequireshonesty,trustandrespect.Deathisrecognizedasfinal,irrevocableact,yetaccompaniedbydisbeliefinthepossibilityofone’spersonaldeath.Intervention–reinforceself-esteem,giveprivacyandindependence,betruthful,allowhimorhertoexpressstrongfeelingsandparticipateindecisionmakingExplainingDeathtoChildrenShouldparentsofchildrenwhoareterminallyilltalkaboutdeathwiththeirchildren?449parentswholostachildtocancerinSwedenbetween1992and1997wereaskedthisquestionNoneofthe147parentswhotalkedwiththeirchildaboutdeathregrettedit69of258paren