The Power of Palliave Care- Quality Care Where You · PDF fileThe Power of Palliave Care-...
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The Power of Pallia-ve Care- Quality Care Where You Work NDLTCA Annual Conference & Trade Show April 28, 2016 Nancy Joyner, RN, MS PalliaCve Care Clinical Nurse Specialist Nancy Joyner ConsulCng, P.C.
Transcript of The Power of Palliave Care- Quality Care Where You · PDF fileThe Power of Palliave Care-...
ThePowerofPallia-veCare-QualityCareWhereYouWorkNDLTCAAnnualConference&TradeShow
April28,2016NancyJoyner,RN,MS
PalliaCveCareClinicalNurseSpecialistNancyJoynerConsulCng,P.C.
ObjecCves
1.DescribethreebenefitsofpalliaCvecare.2.DisCnguishfoursimilariCesordifferencesbetweenpalliaCvecareandhospice.3.IdenCfyfourpalliaCvecarestrategiesthatcanbeusedinanyseQng.
WhatareHospiceandPalliaCveCare?
DefiniCons:• Hospice(Fr):restfortravellers(LaCn):hospiCum“guesthouse”• Palliate(LaCn):tocloakorcover• PaCent(LaCn):onewhosuffers
WhatisPalliaCveCare?“AnapproachwhichimprovesthequalityoflifeofpaCentsandfamiliesfacinglifethreateningillnessthroughtheprevenConandreliefofsufferingbymeansofearlyidenCficaConandimpeccableassessmentandtreatmentofpainandotherproblems,physical,psychological,andspiritual.”
(WorldHealthOrganizaConwebsite)
PalliaCveCareasABridge
GeneralPrinciplesofPalliaCveCare
l PaCentandfamilyasunitofcarel AaenContophysical,psychological,socialandspiritualneeds
l Interdisciplinaryteamapproachl EducaConandsupportofpaCentandfamilyl ExtendsacrossillnessesandseQngsl Bereavementsupport
hap://www.nhpco.org
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“Modern Medicine” Hospice
Palliative Care
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Physical
FuncConalAbilityStrength/FaCgueSleep&Rest
NauseaAppeCte
ConsCpaConPain
PsychologicalAnxiety
DepressionEnjoyment/Leisure
PainDistressHappiness
FearCogniCon/AaenCon
QualityofLife
SocialFinancialBurdenCaregiverBurden
RolesandRelaConshipsAffecCon/SexualFuncCon
Appearance
SpiritualHope
SufferingMeaningofPain
ReligiosityTranscendence
hap://prc.coh.org/qual_life.asp
PalliaCveCareversusHospiceCare
• AllofhospiceispalliaCvecare,butnotallpalliaCvecareishospice.
• MedicarebenefitandcriteriaforHospice– Prognosisof6monthsorless– CerCfiedbytwophysicians– Followingnormalcourseofdisease– NolongerseekingcuraCvetreatment
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Similarities to Hospice
• Life threatening illness • Deteriorating medical condition • Focus of care is comfort/symptom
management • Supportive care is emphasized • Bereavement support • Family support
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Differences from Hospice
• May receive treatments or aggressive therapies • Patients seen in the hospital • Can be any advanced illness, no time frame • Helps seamless flow when Hospice is
appropriate • What about Code Status?
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PaymentforPalliaCveCareandHospice(CMS.hhs.gov,Medicare.gov)
Hospice(perdiem)• Medicare*• Medicaid*• MostPrivateInsurances*
(*specificguidelinesonitemizedcoveragebenefits)
PalliaCveCare• FeeforService
– Medicare– Medicaid– MostPrivateInsurances
• Philanthropy• Directhospitalsupport
SummaryPalliaCveCareGoals
• Painmanagement• OtherSymptoms• PaCentSupport• Familysupport• GoalsofCareClarified• PaCentPercepConofPrognosis
• FamilyPercepConofPrognosis
• FamilyDynamics • Codestatus• AdvanceDirecCve • SpiritualSupport • HealthSystemissues• StaffSupport• DischargeGoals• Other
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TheImpactofUnwanted,UncoordinatedTreatment
• 30%oftreatmentisunwanted,unnecessary(IOM,2014)
• SenCnelEvent-JointCommissions/Surveyors1.Humanfactors 6.PhysicalEnvironment2.Leadership 7.ConCnuumofCare3.CommunicaCon 8.OperaCveCare4.Assessment 9.MedicaConUse5.InformaConmanagement10.CarePlanning
• PaCentandFamilySaCsfacCon– Increaseddistress
• DiminishedTrust/CommunicaCon
PALLIATIVECARESTRATEGIESINANYSETTING
BenefitsofPalliaCveCareinLongTermCare
• Improvesthequalityofcare• IncreasespaCentandfamilysaCsfacCon• Reducesiatrogenesis(reducedexposuretoharmfulmedicalcarei.e.,hospitalizaCons,whichareesCmatedtobethethirdleadingcauseofdeathintheU.S.)
• EffecCvepre-empCvesymptommanagement• Reducesdepression(depressionisanindependentpredictorofmortalityineverydiseaseinwhichitco-occurs).
• Reduces911calls,emergencydepartmentvisitsandhospitalizaCons
• Reduceshealthcarecosts(Meiers,2015,CIVHC&INTERACTwebsites)
ThreeModelsforPalliaCveCareinLongTermCare
1. Hospiceagency/nursinghomepartnerships
2. ExternallybasedpalliaCvecare3. Facility-basedpalliaCvecare
(Meier,2015,Peterson,2016)
WhatDoPaCentswithSeriousIllnessWant?
• AvoidburdeningothersemoConally
• Relieveburdensonfamily
• Avoidanceofburdenandpain
• Painandsymptomcontrol
• Wishtobesparedpain• Avoidburdeningothersfinancially
• Avoiddependenceonothers
• Achieveasenseofcontrol• StrengthenrelaConships
withlovedones• Wishtofollowfamily’s
preferences• Followreligiousteachings• Liveaslongaspossible• Avoidinappropriate
prolongaConofthedyingprocess
• Wishforadignifieddeath
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WhatisaGoodDeath-DiffersBetweenHealthcareProviders(HCPs),
PaCents&FamiliesTop3:
1.Preferencesforaspecificdyingprocess(suchasdyingduringsleepandhavingadvanceddirecCvesinplace)2.Pain-freestatus3.EmoConalwell-being
VaryingPriori-es(pa-ent,family,HCP)• LifecompleCon• Qualityoflife• Religiosity/spirituality• Dignity• Family• Treatmentpreferences• RelaConshipwithHCP• “Other.” (Mulcahy,2016,Meieretal,2016)
WhatDoFamilyCaregiversWant?Studyof475familymembers1-2yearsa7erbereavement
• Lovedone’swisheshonored• Inclusionindecisionprocesses• Support/assistanceathome• PracCcalhelp(transportaCon,medicines,equipment)• Personalcareneeds(bathing,feeding,toileCng)• HonestinformaCon• 24/7access• Tobelistenedto• Privacy• Toberememberedandcontactedaqerthedeath
(Cagle&Porthouse,2008).
InsCtuteofMedicine(2014)Healthcaredeliveryorganiza-onsshouldtakethefollowingstepstoprovidecomprehensivecare:
• Allpeoplewithadvancedseriousillnessshouldhaveaccesstoskilledpallia-vecareor,whenappropriate,hospicecareinallseQngswheretheyreceivecare(includinghealthcarefaciliCes,thehome,andthecommunity).
• Pallia-vecareshouldencompassaccesstoaninterdisciplinarypallia-vecareteam,includingboard-cerCfiedhospiceandpalliaCvemedicinephysicians,nurses,socialworkers,andchaplains,togetherwithotherhealthprofessionalsasneeded(includinggeriatricians).
• Dependingonlocalresources,accesstothisteammaybeonsite,viavirtualconsulta-on,orbytransfertoaseRngwiththeseresourcesandthisexper-se.
TopTenReasonstoWorkTogether
• Improvedqualityoflifeforresident/family
• SocialacCviCesLTC• Beaersurveys• Newfriends• Makeeachother’sliveseasier
• DiscussionsofEOLwithfamilymembers
• Improvedpainandsymptommanagement
• PrognosCcaCon• Synergyiscreatedwhen
combiningexperCseofeach
• RegulaCons(sayweshould)
(Fisheretal,2016)
HospiceSpecificStrategies
• Comfortfocus• Limitedlifeexpectancy• CoverageforHospice
services• CareTeaminvolvement• 24hournursing
available• CollaboraCvecare
• PromoCngcomfortandsymptomcontrolwithmedicaCons
• Non-pharmacologicalcomfortandinterdisciplinaryapproach
• ComfortmaintainedintheircurrentseQng
• Facilitystaffasfamily(Fisheretal,2016)
Na-onalConsensusProject,2013EightDomainsforQualityPracCce
NCP&NQF:EightDomainsofPalliaCveCare
1. StructureandProcessesofCare2. PhysicalAspectsofCare3. PsychologicalandPsychiatricAspectsofCare4. SocialAspectsofCare5. Spiritual,ReligiousandExistenCalAspectsof
Care6. CulturalAspectsofCare7. CareofthePaCentattheEndofLife
8.EthicalandLegalAspectsofCare
Domain1:StructureandProcessesofCare
• ComprehensiveinterdisciplinaryassessmentofpaCentandfamily
• AddressesidenCfiedandexpressedneedsofpaCentandfamily
• Interdisciplinaryteam(IDT)consistentwithplanofcareengagementandcollaboraCon
• EducaConandtraining• EmoConalimpactofwork• TeamhasrelaConshipwithhospices• PhysicalenvironmentmeetsneedsofpaCentandfamily
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Domain2:PhysicalAspectsofCare
• Painandothersymptoms-treaCngsideeffectsusingbestpracCces
• Teamdocuments,communicatestreatmentalternaCvespermiQngpaCent/familytomakeinformedchoices
• Familyiseducatedandsupportedtoprovidesafe/appropriatecomfortmeasurestopaCent
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PhysicalAspectsofCareBeyondPain
• FaCgue• Fever• Hiccups• NauseaandvomiCng• OralSecreCons-
copiousorthick• PruriCs• Seizures• SkinandWound,Malignant
Wounds,PressureUlcers,PruriCs,sensiCvity
• SleepDisturbance/Insomnia• StomaCts• Weakness(asthenia)• Xerostomia/DryMouth
• AgitaCon• AnorexiaandCachexia• Anxiety• Ascites/Edema• Asthenia/LackofEnergy• ConsCpaCon• Cough• Delirium,Confusion,Terminal
restlessness• Depression• Diarrhea• DryEyes/DryNose• Dyspnea/shortnessofbreath• Dysphagia
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Domain3:PsychologicalandPsychiatricAspectsofCare
• Psychologicalandpsychiatricissuesareassessedandmanaged
• Teamemployspharmacologic,non-pharmacologic,andcomplementarytherapiesasappropriate
• GriefandbereavementprogramisavailabletopaCentsandfamilies
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Domain4:SocialAspectsofCare
• Interdisciplinarysocialassessment• Careplandeveloped• Referraltoappropriateservices
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SocialAspects
• Sexuality• InCmacy• Livingarrangements• Caregiveravailability• AccesstotransportaCon,
medicaCons• Neededequipment,
nutriCon• Communityresources• Legalissues
• Familystructure• GeographiclocaCon• RelaConships• LinesofcommunicaCon• ExisCngsocialandcultural
network• Perceivedsocialsupport• Medicaldecisionmaking• WorkandschoolseQngs• Finances
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Domain5:Spiritual,ReligiousandExistenCalAspectsofCare
• AssessesandaddressesspiritualconcernsRecognizesandrespectsreligiousbeliefs
• Providesreligioussupport• MakesconnecConswithcommunityandspiritual/religiousgroupsorindividualsasdesiredbypaCent/family
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Domain6:CulturalAspectsofCare
• Assessesandaimstomeettheculture-specificneedsofpaCentsandfamilies
• Respectsandaccommodatesrangeoflanguage,dietary,habitual,andritualpracCcesofpaCentsandfamilies
• Teamhasaccessto/usestranslaConresources• RecruitmentandhiringpracCcesreflectculturaldiversityofcommunity
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Domain7:PaCentattheEndofLife
• Signsandsymptomsofimpendingdeatharerecognizedandcommunicated
• AspaCentsdecline,teamintroducesorreintroduceshospice
• Signs/symptomsofapproachingdeatharedevelopmentally,age,andculturallyappropriate
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Domain8:EthicalandLegalAspectsofCare
• PaCent’sgoals,preferences,andchoicesarerespectedandformbasisforplanofcare
• Teamisawareofandaddressescomplexethicalissues
• TeamisknowledgeableaboutrelevantfederalandstatestatutesandregulaCons
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EthicalPrinciples
• Autonomy--PaCentsshouldbeinformedandinvolvedindecisionmaking-theirrighttochoose
• Beneficence--DoGood• Non-maleficence--DoNoHarm• JusCce--balancingneedsofanindividualwiththoseofthesociety/community
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AllDomains=HolisCc,QualityPalliaCveCare
1. Physical2. Psychological3. Social4. EmoConal5. Spiritual6. Cultural7. CareofthepaCentattheendoflife8. LegalandEthical
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THEFOURC’SOFPALLIATIVECARE
The4C’sofPalliaCveCare
• Comfort• CommunicaCon• Choices• Control
COMFORT
DefiningComfort• Astateofphysicalease• FreedomfrompainorconstraintTogivecomfort:• Tocause(someone)tofeellessworried,upset,frightened,etc.
• Togivestrengthandhopeto• ToeasethegriefortroubleofComfortCare:• PalliaCveandsupporCvetreatmentforpaCentswhoaresufferingfromaterminalillness,aimedatrelievingsymptoms,enhancingthequalityofremaininglife,andeasingthedyingprocess
SynonymsforComfort/Discomfort/Pain
• tComfort
• Content• Coziness• Ease• Pain-free• Peaceful• Relaxation• Relief• Repose• Secure• Serene• Solace• Well-being
Discomfort
• Ache• Anxiety• Bothersome• Discomposure• Distress• Disquiet• Embarrassment• Hardship• Painful• Problem• Troublesome• Uneasiness• Worry
Pain
• Ache• Agony• Discomfort• Distress• Grief• Heartache• Hurt• Pang• Pressure• Smarting• Stabbing• Shooting• Sting• Soreness• Sorrow• Suffering• Tender• Throbbing• Torment• Torture• Twinge
TotalPain• DameCicelySaunders(1978)-CancerPain• ComponentsofHumanFuncConing-personality,mood,behavior,social
relaCons
WholePerson-Mul-modal• Physicalpain(usuallymulCplesourcesand/orsites)• Psychological/EmoConalpain– Psychologicaldistress– Pastexperiencewithpain
• SocialorInterpersonalpain– LackoforsupporCvesocialandfamilybacking– Socio-environmentalfactors– Contact/educaConwithhealthcareprofessionals
• SpiritualorexistenCalpain– Thoughtsandbeliefs
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Short/LongTermEffectsofUnrelievedPain
• Increasesphysiologicalstress
• Diminishesimmunity• Decreasesmobility• Increasesworkofbreathing
• Increasesmyocardialoxygenrequirements
• Changesinbraincircuitry/endorphins/graymaaer
• Impairssleep• Increases
decondiConing/gaitchanges
• Decreasesenergy• IncreasescogniCve
deficits• Impairsqualityoflife• Increaseshospitalre-
admission• Mayincreasespiritual
distress• Mayhastendeath
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PainintheElderly
• Consider:– Mechanical?– Musculoskeletal?– Inflammatoryvs.chronic?– Chronic?– Mixed?
• StartwithscheduledAcetaminophen(costeffecCve,lowtoxicity,around-the-clock)
• Opioidsinlowerdose,startlowgoslow• IncludeafuncConalandpsychologicalassessmenttomanagingpain 48
PainAssessmentTools
Selfreportvsnon-self-reportofpain• VerbalDescriptorScale• EdmontonSymptomAssessmentSystem(ESAS)
• PainThermometer:diagramofathermometerwithworddescriptorsthatshowsincreasingpainintensiCes
• FacesPainScale:• PAINAD-cannotgiveaverbalself-reportofpain
NCCNClinicalPracCceGuidelinesInOncology(NCCNGuidelines®)forDistressManagementV.2.2015.
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PaCentDignityInventory(PDI)
• Self-report,self-reflecCon• MulCdimensionalscreeningtool• FocusesonvarioussourcesofdistressencounteredbycancerpaCents
• IdenCfiesamulCtudeofissuesaffiliatedwithlife-threateningandlife-limiCngillness
• Psychosocial,existenCal,andspiritualdomainsofconcern.
(Chochinovetal.,2013)
Pain-7SimpleStepstoSuccess
1. Explorethegoal2. IdenCfybaseline3. Examineprocess4. Createimprovement5. Engage6. Monitorandsustain7. Celebratesuccess
AdvancingExcellenceinAmerica’sNursingHomeswebsite
TreaCngOlderAdults
• MulCmodalapproach• ScheduleduseofprescripConandover-the-counter(OTC)analgesicmedicaCons
• NSAIDscanbeeffecCveintreaCngpainsyndromes,
• ButhazardousinolderpaCentswithhypertension,pepCculcerdisease,orimpairedrenalfuncCon.
• Evidence-basednon-pharmacologictreatments– CogniCve-behavioraltherapy– Exercise– Physicaltherapy
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SimpleComfortMeasures
• DistracContechniques– Listeningtomusic– Watchingtelevision– Storytelling
• RelaxaContechniques– Massage– Soqtouch– WarmapplicaCons
SensorysCmulaCon– pettherapy– Foldingwarmclothes– Aromatherapy
• CogniCvetherapies– Reading– Reminiscing–Lifereview
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TherapeuCcStrategiesforPain– Pharmacotherapy– RehabilitaCveapproaches– Psychologicapproaches– Anesthesiologicapproaches– Surgicalapproaches– NeurosCmulatoryapproaches– ComplementaryandalternaCveapproaches– Lifestylechanges 56
PharmacotherapyConsideraCons
• Cost• Easeofuse• RouteofadministraCon• MulCmodaltherapy• Dosing• CompliancewithmedicaCon(paCentorfamily)
• EsCmatedlifeexpectancy57
Non-PharmacologicalIntervenCons
• Aerobic/exercise• Acupuncture• Aromatherapy• Ayurveda• Bingo• Biofeedback• ChelaContherapy• ChineseMedicine• ChiropracCccare• CogniCvereframing• ColorLightTherapy
• Deepbreathingexercises• Diet-based/nutriCon
therapies• DistracCon• Energyhealingtherapy• Folkmedicine• Guidedimagery• Herbalmedicine• Homeopathictherapy
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Non-PharmacologicalIntervenCons(cont.)
• Hypnosis• MagneCctherapy• Massage• MeditaCon• Megavitamintherapy• Musictherapy• Naturopathy• Osteopathiccare• PetTherapy• Prayer/Pastoral
counseling
• PowerCompression• ProgressiverelaxaCon• Qigong• RelaxaCon• ReposiConing/bracing• Reiki• Supportgroups• Taichi• Triggerpoints• Ultrasound• Yoga
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Non-pharmacologicalIntervenConsSensory /Physical Cognitive Cognitive/Behavioral
• Healing Touch • Aromatherapy • SPA treatment • Music Therapy • Cold/Heat therapy • Hot packs • Deep breathing • Environmental modification • Exercise/ Physical therapy • Relaxation • Massage • TENS • Acupuncture • Pet Therapy • Ultrasound • Trigger points • Nutrition/dietary • Magnetic therapy
• Guided imagery • Progressive relaxation • Hypnosis • Choices control • Positioning • Psychotherapy • Distraction • Spiritual counseling /
prayer • Meditation
• Art and Play therapy • Modeling, role playing, behavioral rehearsal • Biofeedback • Mindful meditation • Breathing/Relaxation
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ComfortMaaers-ConsiderDemenCaCareEducaCon
• Interdisciplinaryprofessionalcaregivers• BestPracCcesfordemenCacare• ComfortCare• AnCcipaConofNeeds• KnowthePerson• Person-DirectedPracCce• StaffEmpowerment
(Meiers,2015,Comfortmaaers.org)
COMMUNICATION
PalliaCveCare101IniCaCngaConversaCon
• Manyhealthcareproviders(HCP)feeltheylackexperienceindiscussingtheissuesthatcomewithprogressive,debilitaCngillnesses
• ThemoreaHCPpreparesfordiscussionsandpracCces,themoreskilledtheproviderbecomes
• FocusededucaConimprovedskillsatbreakingbadnews
FactorsInfluencingCommunicaCon
• Cognitive Status • Physical limitations • Past and present understanding of status • Goals of care/treatment (patient, family,
HCP) • Family system changes • Financial uncertainties
CommunicaCon
• Ask how much patient/family want to know • How much do they know/understand • Initiate family meetings • Illness can strengthen or weaken relationships • Base communication with children on
developmental age
FirstandForemost
• TrustandUnderstanding• EducaCon-givingchoices• PaCentAdvocate-SharedDecisionMaking
• PainandSymptomManagement
ABCDE
• AdvancepreparaCon• BuildatherapeuCcenvironment/relaConship• Communicatewell• DealwithpaCentandfamilyreacCons• EncourageandvalidateemoCons
AaenCveListening
• Encourage them to talk • Be silent • Share your feelings • Avoid misunderstandings • Don’t change the subject • Take your time in giving advice • Encourage reminiscing • Create legacies
BarrierstoCommunicaCon
• Fear of mortality • Lack of experience • Avoidance of emotion • Insensitivity • Sense of guilt • Desire to maintain hope
BarrierstoCommunicaCon(cont.)
• Fear of not knowing • Disagreement with decisions • Lack of understanding culture or goals • Role relationships • Personal grief issues • Ethical concerns
MindfulPresence
Requires: • Acknowledging vulnerability • Intuition • Empathy • Being in the moment • Serenity and silence
Wittenberg-Lyles et al., 2013
RelaConshipBuilding“PEARLS”
• Partnership-Let’sworkonthistogether• Empathy-Iimaginethishasbeendifficult
• Apology-I’msorryIdon’thavebeaernewsIwishIhadbeaernews
• Respect-Youhaveworkedveryhard…• LegiCmizaCon-“Manyotherswouldhavedonethesamething”
• Support-Iamhereforyou(Chuta,2016)
ThePowerofEmpathy
• E-Eyecontact/gaze• M-Musclesoffacialexpression• P-posture-conveysconnecCon• A-Affect-expressedemoCons,feelings• T-Toneofvoice• H-Hearingthewholeperson-don'tjudge• Y-You-yourresponsepeoplesfeelings/mirroring
(Reiss,2014,Chuta,2016)
QuesConstoFacilitateQuality-of-LifeDiscussions
Howisyourqualityoflife?Isthishowyouthoughtitwouldbe?Ifyouwerenotill,howwouldyouspendourCmeorhowwould
youliketospendyourCme?Whichsymptomsbotheryouthemost?HowhasyourdiseaseinterferedwithyourdailyacCviCes?Haveyoubeenfeelingworried,sad,frightenedaboutyourillness?DoyouhaveapreferenceforwhereyouspendyourCme-home,
appointments,procedures,hospital?
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FiveQuesConstoAskPaCents
IniCaCngadiscussionthatmayleadtoadvancecareplanning1)Whatdoyouunderstandaboutyourprognosis?2)Whatareyourbiggestconcerns/fears?3)HowdoyouwanttospendyourCme(goals)?4)Whatkindoftradeoffsareyouwillingtomake?5)Whoshouldmakedecisionsforyouifyouareunable?
SayingGoodbyetoPaCents• Formanyhealthcareproviders(HCP),relaConshipsmaybemeasuredinyears
• ForshorttermHCPs:mayhavehadarelaCvelyintenserelaConshipoverashorterperiodofCme
• WhatdoyoudowhenyouknowthatyourpaCentsaredyingandyoulikelywon’tseethemagain?
CHOICES
CaseStudy-JohnSmith
Mr.JohnSmithisan83y.o.withchroniccongesCveheartfailureandwasrecentlydiagnosedwithlungfailureonhislastadmission.wasrecentlydischargedfromthehospitaltoalocalskillednursingfacility.HehasHeishavingmorepainandbecomingmoreshortofbreath.Hisfamilyisveryconcernedthatheneedstobetransferredbacktothehospitaltomanagehissymptoms.Hedoesn’twanttoreturntothehospital.
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LevelofCareCase–Mr.Smith
1. Whereshouldthediscussiontakeplace?2. Whenshouldthediscussiontakeplace?3. Whoshouldleadthediscussion?4. WhataretheopCons?
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PersonVersusPaCent
• Personhood(NotpaCent)• Comfort(notdisease)• Laylanguage(notmedicalterminology)1. Physical2. Psychological/EmoConal3. Social4. Spiritual,Religious&ExistenCal5. Cultural6. Financialconcerns7. EthicalandLegal 80
WhatevertheDoctorOffers
• Aretheycomfortableforthediscussion?• EveryoneiswaiCngforsomeonetostartit• IfpaCentsdon’thearitisterminal,then“treatable”means“geQngbeaer”,“curableorreversible”versus“managed”.
• Triggertools• PaCentsmaynot“hear”it,overwhelmed
HealthcareProfessionalsInfluenceCommunicaConOutcomes
• Be aware of behaviors and communication style • Lack of personal experience with death and dying • Fear of not knowing the answer • Lack of understanding patient’s and family’s end-of-life goals • Language barriers
SharedDecisionMakingBetweenPhysicianandPaCent:
Physician’sResponsibility:• Informand• RecommendbesttreatmentopCon(s)PaCent’sResponsibility:• AskquesCons• TochooseorrefusetreatmentopCon(s)
PaCentAdvocatePresent?Neutralvalue/ClarificaConofdiscussion
SharedDecisionMakingConversaCons
• Normalizecomments/quesCons
• InquireaboutpaCent’sunderstandingofillnessandtreatmentopCons
• ElicithopesandexpectaCons
• ElicitthoughtsregardingCPR(CardiopulmonaryResuscitaCon)
• Re-visitgoalsofcare
• Include/fortheFamily 84
GivingChoices• AggressiveTreatment• Time-Limited,goals• Comfortfocusincludinghospicefromthebeginning?
• Lifesustainingtreatment
PaCent/FamilyQuesCons
• DoIhaveaseriousorlife-limiCngillness?• Canmyillnessbecured?• Ifmyillnesscan’tbecured,aretheretreatmentsthatcanslowdownmyillness?
• Whatkindofcareisavailabletofocusonmakingmecomfortable?
• IfmyillnesskeepsgeQngworse,whenisitagoodCmetothinkaboutgeQngsupporCveandcomfortfocusedcare?
• Willyoubetheonetotellmewhentocontacthospice?
• WillyoustayinvolvedwithmycareevenwhenIamnolongerlookingfortreatmentformydisease?
HardChoices/EasyChoices?HardChoices• AaemptCPR/AllowNatural
Death• Re-hospitalizaCon• Chemotherapy,radiaCon
therapy• Surgery• IntubaCon• ArCficialHydraCon/NutriCon• Dialysis• AnCbioCcs• Levelofpaincontrol• Hospice-focusoncomfort
caresonly
EasyChoices• ReposiConing• ResCng/Napping• ToileCngschedule• Dressing• MealCme/snacks• BathCme/rouCne• SocializaCon• Oralcare/sipsofwater• AcCviCes/RecreaCon• OuCngs/mobility
DeterminingBenefitvsBurden
• Whatdoyouenjoydoingnow?• WhatisyourillnessprevenCngyoufromdoing?• Whatismostimportanttoyourightnow?• Whatisthehardestpartofthisforyouandyourfamily?
• Whenyouthinkaboutthefuture,whatconcernsdoyouhave?
NewStrategies
• Needtotryanew/differentapproach•EmpoweringthecommunitytobringupthequesCons•ProvidingresourcestoHCPtohavethediscussionsearlier•SeQngtheconversaConsasapriority– GettheopportunitytohavetheconversaCon
• NeutralValueresponses/Factbased
CommunicaConandGoalsofCare
• AdvanceCarePlanning– LifeLongProcess– Discussion
• PaCent’sunderstanding-diagnosis,prognosis• PaCent’svalues,goals,preferences• PaCent’sopCons
– DocumentaCon-HealthcareDirecCves-agent,livingwill-CodeLevel–inpaCent/outofhospital-POLST
Advance Care Planning in North Dakota
Advance Care Planning: Definition
Aperson-centered,ongoingprocessofcommunicaConthatfacilitatesindividuals’understanding,reflecConanddiscussionoftheirgoals,valuesandpreferencesforfuturehealthcaredecisions.
RespecCngChoices®GundersonHealthSystem
hap://www.gundersenhealth.org/respecCng-choices
“ThenameHonoringChoicesNorthDakotaisusedunderlicensefromEastMetroMedicalSocietyFoundaCon.” 92
Honoring Choices North Dakota®
VisionTocreateacultureacrossNDwhereconCnuous(on-going)advancecareplanningisthestandardofcareandeveryindividual’sinformedpreferencesforcare
aredocumentedandupheld
GoalToassiststatewidecommunitypartnerswiththe
developmentandimplementaConofacomprehensiveadvancecareplanningprogrambyDecember2016
“ThenameHonoringChoicesNorthDakotaisusedunderlicensefromEastMetroMedicalSocietyFoundaCon.” 93
WhatwillYOUDo?
NaConalHealthcareDecisionsDay2016Theme"ItAlwaysSeemsTooEarly,Un-lIt’sTooLate."
“Weworkwithgreaterconfidencewhensupported.Weworkwithgreaterconfidencewhenwedonotfeel
isolated.”
(Watson,M.2016)
NaConalHealthcareDecisionsDayApril16,2016
CONTROL
CONTROLPaCent/Family’sDecision
Decision-MakingCapacity-5ThingstoConsider1. Understanding2. Taskspecific3. Logical4. Timespecific5. Consistent
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FactorsAffectDecisions
• Complexmedicallanguage• EmoCons(fear,anxiety,anger)• Familysystems/culturalbackground• Uncertainty&ambivalence• PaCent-healthcareproviderrelaConships• Pastexperiencewithhealthcareproviders• PastexperiencewithothersinsimilarhealthcondiCon
ConsiderStagesofDemenCa
• Normalagedforge|ulness• MildcogniCveimpairment(MCI)• Mild• Moderate• Moderatelysevere• Severe
Morethan2/3ofLTCresidentssufferfrommoderatetoseveredemenCa(Meier,2015)
GeneralDemenCaCharacterisCcs
• Onset-insidious• Course-long,nofluctuaCons• Progression-slow,varies• DuraCon-monthtoyears• Awareness-reduced/impaired• Alertness-normaltoless• AaenCon-normaltoimpaired• OrientaCon-gradualimpaired-
severeinlatestage• Neurological-gaitdisturbances,
bowel/bladderinconCnence,primiCvereflexes
• Memory-longandshortimpaired
• Thinking-difficultabstract,wordfind,apraxia
• PercepCon-absent,mispercepCons,hallucinaCons
• Psychomotor-apraxia• Sleep/wale-fragmented,
altered• Affect-variable• Language-limitedvocabulary,
severelyimpairedcommunicaCon
• Speech-dysphagia(Cordell,etal,2013,Doughertry,2015,Maxwell,2015)
FuncConalAssessmentStagingofAlzheimer’sDisease(FAST)Scale
1. Normal2. Normalolderadult3. EarlydemenCa4. MilddemenCa5. ModeratedemenCa6. ModeratelyseveredemenCa7. SeveredemenCa
NeurocogniCveFuncConalAssessmentDependent=3Requiresassistance=2Hasdifficultybutdoesbyself=1Normal=0,Neverdid[theacCvity]butcoulddonow=0Neverdidandwouldhavedifficultynow=11.WriCngchecks,payingbills,balancingcheckbook2.Assemblingtaxrecords,businessaffairs,orpapers3.Shoppingaloneforclothes,householdnecessiCes,orgroceries4.Playingagameofskill,workingonahobby5.HeaCngwater,makingacupofcoffee,turningoffstoveaqeruse6.Preparingabalancedmeal7.Keepingtrackofcurrentevents8.PayingaaenConto,understanding,discussingTV,book,magazine9.Rememberingappointments,familyoccasions,holidays,10.medicaCons11.Travelingoutofneighborhood,driving,arrangingtotakebuses
(Ratner,2015)
DecisionMakingCapacityTools
• Mini-MentalStatusExaminaCon(MMSE)• ShortPortableMentalStatusQuesConnaire(SPMSQ)
• DeliriumObservaConScreeningScale• ConfusionAssessmentMethod(CAM)• CapacitytoConsenttoTreatmentInstrument(CCTI)
• HopemontCapacityAssessmentInterview(HCAI)• TheInstrumentforPaCentCapacityAssessment(ICAN)
(MayoClinicwebsite,Kalrawish,2016)
TheInstrumentforPa-entCapacityAssessment(ICAN)
• MayoClinic’sKnowledgeandEvaluaConResearch(KER)Unit-MinimallyDisrupCveMedicine
• 3Minuteclinicalencounterdiscussionaid• HelppaCents/healthprofessionalsdiscusspaCent’slife/issues
• Shi%sthefocusfrommedicalcondiContoperson’slifesituaCon
• Exploreshowhealthcareservesorlimits• Recognizesandcul5vatesopportuniCes-advancetheperson/theirsituaCon.
hap://minimallydisrupCvemedicine.org/ican/
Delirium/DemenCa/Depression(Heidrich&English,2015)
Delirium Demen-a Depression
Onset Sudden(hrs.-days)
Insidious(mo.-years)
UsuallyWks-mos
Course/DuraCon Acute-daystowks. Slow,progressive Persistentbutwaningw/tx.
AaenConSpan decreased Normal-chronicwithdecline
Normal/testspoor-effort
Psychomotor +or- Normalor- -
Mood Normal/anxious Normal/apathy decreased
ADLs Maybeintactorimpaired
Maybeintactthenimpaired
Mayneglectbasicselfcare
PsychoCcfeatures HallucinaCons,confusion
Delusions,hallucinaCons
RarehallucinaCons
CaseStudyMargaret
Margaretisa79y.o.ladywithmildtomoderatedemenCainabasiccarefacility.Sheiswanderingandhavingmorefalls.ShewanttomanageherownmedicaCons.Shedoesnotseeherproblemsorwanthelp.Herdaughterhascalledyouwithconcerns.Whatcanyoudo?
References(1of4)
• AdvancingExcellenceinAmerica’sNursingHomes(2016).Pain-Followthesesevensimplestepstosuccess.RetrievedApril2016,haps://www.nhqualitycampaign.org./goalDetail.aspx?g=pain
• Cagle,C.&Porthouse,M.(2008).PalliaCveCarepresentaCon.RetrievedApril2016,hap://cancercoaliConofvirginia.org/PDFs/Home/PalliaCveCarePresentaCon3CapitalCaring.pdf
• CenterforImprovingValueinHealthCare(CIVHC).(2012).PalliaCveCareBestPracCces:AGuideforLong-TermCareandHospice.RetrievedMarch2016,
• hap://lifequalityinsCtute.org/newbuild/wp-content/uploads/2013/04/PalliaCve-Care-Best-PracCces-A-guide-for-Long-Term-Care-and-Hospice.pdf
• Chutka,D.(2016).TheArtofGoodProvider-PaCentCommunicaConSkills.PresentaCon-MNHPCConferenceApril10-12,2016.
• Duddy,S.&Schuetz,L.(2016).EffecCveLovingCare.PresentaCon-2016MNHPCConference
References(2of5)• Fischer,B.,Gerard,L.,Haynes,B.,Nevinski,S.,&Peterson,S.(2016).Hospice
andNursingHomesCollaboraCngforCompliance.PresentaCon-MNHPCConferenceApril10-12,2016.
• Gialin,L.&VerrierPierson,C.(2014)ACaregiver'sGuidetoDemen5a:UsingAc5vi5esandOtherStrategiestoPrevent,ReduceandManageBehavioralSymptoms.AmazonDigitalServices,LLC.
• HonoringChoicesNorthDakotawebsite.RetrievedApril2016,hap://www.honoringchoicesnd.org/
• InsCtuteofMedicine(IOM).(2014).DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesNeartheEndofLife.RetrievedApril2016,hap://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx
• INTERACT(IntervenConstoReduceAcuteCareTransfers)website.RetrievedApril2016,hap://interact2.net/
• Karlawish,J.(2016)Assessmentofdecision-makingcapacityinadults.Uptodate.hap://www.uptodate.com/contents/assessment-of-decision-making-capacity-in-adults
References(3of4)
• Long,C.,Morgan,B.,Alonzo,T.,Mitchell,K.,Bonnell,D.&Beardsley,M.(2010).ImprovingPainManagementinLong-termcare:Thecampaignagainstpain.JHospPalliatNurs12(3):148-155.
• Meier,D.(2015).Tomorrow'snursinghomesmustintegratepalliaCvecare.RetrievedApril2016,hap://www.mcknights.com/guest-columns/diane-e-meier-md-facp/arCcle/391683/
• Meier,E.,Gallegos,J.,MontrossThomas,L;,Depp.,C.,Irwin,S.&Jeste,S.,(2016).DefiningaGoodDeath(SuccessfulDying):LiteratureReviewandaCallforResearchandPublicDialogueAmJGeriatrPsychiatry.2016;24:261-271.RetrievedApril2016,
• hap://www.ajgponline.org/arCcle/S1064-7481(16)00138-X/pdf• Molton,I.&Terrill,A(2014).Overviewofpersistentpaininolderadults.AmPsych.69
(2):197-207.RetrievedApril2016,hap://www.apa.org/pubs/journals/releases/amp-a0035794.pdf
• Mulcahy,N.(2016).Whatisagooddeath?Studyhasanswers.Medscape.RetrievedApril2016,hap://www.medscape.com/viewarCcle/861530
References(4of4)• NaConalConsensusProject.(2013).ClinicalPrac5ceGuidelinesfor
QualityPallia5veCare.3rdEdBrooklyn,NY:NaConalConsensusProjectforQualityPalliaCveCare.RetrievedApril2016,haps://www.hpna.org/mulCmedia/NCP_Clinical_PracCce_Guidelines_3rd_EdiCon.pdf
• Peterson,S.(2016).PalliaCveCareintheNursingHome.PresentaConMNHPCConferenceApril10-12,2016
• Ratner,E.(2015)CogniCveAssessmentPresentaCon.MinnesotaGerontologicalSociety.RetrievedApril2016,hap://www.mngero.org/wp-content/uploads/2015/04/CogniCve-Assessment-for-MGS-Ratner-5.1.15.pdf
• Riess,H.(2014).ThePowerofEmpathy.RetrievedApril2016,haps://www.youtube.com/watch?v=baHrcC8B4WM
• Schellinger,S.&Curran,S.(2016).AnInnovaCveApproachtoOperaConalizingtheDomainsofPalliaCveCare.PresentaCon-2016MNHPCConferenceApril10-12,2016
