Serious Illness Care Program - BC Renal
21
Serious Illness Care Program — Reference Guide for Interprofessional Clinicians Page 1 Key Ideas for successful discussions about serious illness care across settings: Principles • “Patients” includes patients, clients, residents, and their families as the unit of care across settings. “Clinicians” includes Physicians, Nurses and other Allied Health professionals • Patients have goals and priorities besides living longer; learning about them empowers you to provide better care • You will not harm your patient by talking about serious illness, declining function and end-of-life issues • Anxiety is normal for both patients and clinicians during these discussions • Patients want the truth about prognosis, disease trajectory and what to expect in the future • Titrate conversations based on patient’s responses (especially anxiety) • Giving patients an opportunity to express fears and worries is therapeutic • These conversations may be formal and planned, or informal and unplanned Practices Do: • Explore patient’s understanding of their illness and what to expect in the future • Discuss prognosis directly and honestly when desired by patient • Give a direct, honest prognosis when desired by patient • Present prognostic information in a range • Discuss changes that could be expected as the disease progresses (i.e. functional, cognitive and social) • Allow silence • Listen actively • Acknowledge and explore emotions (NURSE mneumonic) : This material has been modified by the Serious Illness Conversation Nurse Working Group (Canada). The original content can be found at https://portal.ariadnelabs.org and is licensed by Ariadne Labs under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. Serious Illness Care Program Reference Guide for Interprofessional Clinicians N – Naming U – Understanding R – Respect S – Supporting E – Exploring
Transcript of Serious Illness Care Program - BC Renal
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page1
KeyIdeasforsuccessfuldiscussionsaboutseriousillnesscareacrosssettings:
Principles• “Patients”includespatients,clients,residents,andtheirfamiliesastheunit
ofcareacrosssettings.“Clinicians”includesPhysicians,NursesandotherAlliedHealthprofessionals
• Patientshavegoalsandprioritiesbesideslivinglonger;learningaboutthemempowersyoutoprovidebettercare
• Youwillnotharmyourpatientbytalkingaboutseriousillness,decliningfunctionandend-of-lifeissues
• Anxietyisnormalforbothpatientsandcliniciansduringthesediscussions• Patientswantthetruthaboutprognosis,diseasetrajectoryandwhattoexpectinthefuture
• Titrateconversationsbasedonpatient’sresponses(especiallyanxiety)• Givingpatientsanopportunitytoexpressfearsandworriesistherapeutic• Theseconversationsmaybeformalandplanned,orinformalandunplanned
PracticesDo:• Explorepatient’sunderstandingoftheirillnessandwhattoexpectinthefuture• Discussprognosisdirectlyandhonestlywhendesiredbypatient• Giveadirect,honestprognosiswhendesiredbypatient• Presentprognosticinformationinarange• Discusschangesthatcouldbeexpectedasthedisease
progresses(i.e.functional,cognitiveandsocial)• Allowsilence• Listenactively• Acknowledgeandexploreemotions(NURSEmneumonic)
:ThismaterialhasbeenmodifiedbytheSeriousIllnessConversationNurseWorkingGroup(Canada).Theoriginalcontentcanbefoundathttps://portal.ariadnelabs.organdislicensedbyAriadneLabsundertheCreativeCommonsAttribution-NonCommercial-ShareAlike4.0InternationalLicense.
SeriousIllnessCareProgramReferenceGuideforInterprofessionalClinicians
N–NamingU–UnderstandingR–RespectS–SupportingE–Exploring
Page2 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
• Focusonthepatient’squalityoflife,fears,andconcerns• Acknowledgethatthesecanbehardconversationsandcanbehadovertime• Makearecommendation(“BasedonXXmedicalsituation,YYtreatmentoptions,andZZimportantgoalsandvalues,Irecommend…”OR“BasedonwhatIhaveheardyoutellmeaboutwhatisimportanttoyouandwhatyourconcernsare,Irecommend...”)
• Documentandcommunicatetheconversationsothatitisavailabletotheteam(includingpatients)
Donot:• Talkmorethanhalfthetime• Giveprematurereassurance• Providefactualinformationinresponsetostrongemotions• Focusonmedicalprocedure
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page3
Contents
KeyIdeas—Principles&Practices 1
SeriousIllnessCareProgram:Oneconversationormany 4
Overviewofmaterials 4
SeriousIllnessConversationGuide:Howtheguideisorganized 6
Initiatingtheconversationwithapatient 7
Strategiesforcommonscenarios 8
Patientsays“Idon’twanttotalkaboutit” 8
Patientsays“I’mgoingtobeatthis” 9
Patientisnotreadytomakeadecision 10
Patientexpressesintenseemotion(tears) 11
Patientexpressesanger 12
Patientisreluctanttostopdiseasemodifyingtreatment 12
Iftimingisrightforacodestatusconversation 13
Discussingprognosis 14
Clinicianchangesfocustomakingadecision 16
Whenitistimetomakeaplan:
Makingarecommendation 17
Talkingaboutfamilyinvolvement 17
The“Wish/Worry/Wonder”framework 18
Managingtheconversation:Practicalchallenges 19
Documentingtheconversation 20
Unplanned/Informalconversations:usingtheguideintheprocessofcare 20
NOTE:ThisdocumentisNOTintendedforusewithpatients.Itisforyourreferenceinhoningend-of-lifecommunicationskillsorwhenpreparingforaconversationwithanindividualpatient.
Page4 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
SeriousIllnessCareProgram:Oneconversationormany?Someconversationsareformalappointmentsorinterviewswithpatientsandfamilies.Manyalliedhealthclinicianswillhavetheseconversationsduringmomentsofcare–sotheymayemergeasinformalandunplannedconversations.TheSeriousIllnessConversationGuideandthisInterprofessionalClinicianReferenceGuidecanhelpyouhavetheseconversations.Cliniciansincludephysicians,nursesandotheralliedhealthprofessionals.
Overviewofmaterials
Thesetoolsareavailabletoyou,theclinician,tohelpyouhavesuccessfulconversationswithyourpatientsaboutseriousillnesscaregoals.Usethesetoolsandthelanguagewithinthematleast30timessoyoubecomecomfortablewiththelanguageandflow.Then,youcanfeelfreetoad-lib.
Forclinicians
ConversationGuideThebackboneofthisproject,theConversationGuide(version3),willhelpyouhavesuccessfulconversationswithyourpatients.Itconsistsofstepstoelicitimportantinformationfrompatientsabouttheirgoalsandvalues:settinguptheconversation,assessingthepatient’sillnessunderstandingandinformationpreferences,sharingprognosis(i.e.whattoexpectasthediseaseprogressesand/orfunctionaldeclineisexperienced),exploringkeytopics,andclosinganddocumentingtheconversation.ConversationGuideModifiedforusewithSubstituteDecisionMakerorFamilyMemberThismodifiedConversationGuide(version3)willhelpyouhavesuccessfulconversationswithyourpatient’sSubstituteDecisionMakerorfamilymember.ItconsistsofstepstoelicitwhetherthepatienthashadpreviousadvancecareplanningdiscussionsordirectivesandwhethertheSDMorfamilymemberareawareofwhatthepatient’shealthcarepreferencesare.Theguidefollowsthestepsofsettinguptheconversation,assessingtheSDM’sorfamilymember’sunderstandingofthepatient’sillnessandwishes,sharingprognosisandwhattoexpectasthediseaseprogresses,exploringkeytopicssuchasfears,worriesandtrade-offs,closinganddocumentingtheconversation.
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page5
ReferenceGuideforInterprofessionalClinicians[thisdocument]Thisreferenceforinterprofessionalcliniciansisavailabletoguideyouthroughallaspectsofseriousillnesscommunication.Itprovidesdetailedinformationabouthowtointroducetheseriousillnessconversation,whatlanguagetouse,andtipsfordealingwithcommonpatientscenarios.
Forpatientsandfamilies
Pre-VisitLetterThisletterisdesignedtopreparepatientsforaseriousillnessconversationwiththeirclinician.Itincludestopicsforpatientstothinkaboutinadvance,reinforcestheimportanceoftheconversation,encouragesthemtoengagefamilymembers,andreassurespatientsthattalkingaboutthefuturewillhelpthemhavemorecontrolovertheircare.Thismaybeausefultoolinyoursetting.
FamilyCommunicationGuideDesignedforthepatient’s(orSubstituteDecisionMaker’s)usewiththeirfamily,thisguidewillhelpyourpatienttalkwiththeirfamilyandfriendsaboutthesametopicsyoubringupwiththeminyourconversations.Liketheclinicianmaterials,itprovideslanguageforthepatienttorelayinformationtotheirfamilyandtocontinuetheconversationbyexploringtheirconcerns.Weencourageyoutoremindyourpatientsthatthisresourceisavailabletothem.
Page6 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
SeriousIllnessConversationGuide:Howtheguideisorganized
LEFTSIDEConversationFlow
Thisisaguidetohelpseriousillnessconversationsflowandensureyoucompletekeystepsofasuccessfulconversationinanintentionalsequence.
RIGHTSIDEPatient-TestedLanguage
Thesewordshavebeentestedwithpatients;theyarealignedwiththeconversationflowforeasyreference.
Usethesewordstohelpensureameaningfulandsuccessfulconversation.Omitquestionsyoudon’tthinkareappropriateatthistime.
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page7
PROMPT PURPOSE SUGGESTED LANGUAGE
InitiatingtheconversationwithapatientorSubstituteDecisionMaker
WHEN
HOW
Theidealtimetointroduceadiscussionofvaluesandgoalsiswhenthepatientisrelativelystableandnotinamedicaloremotionalcrisis.
Usethe‘Setuptheconversation’promptstohelpyouremembertheoptimizedsequenceofideasforintroducingtheconversationwithapatient.Thetablebelowillustratessuggestedlanguagethatflowsfromoneideatothenext.Beforestartingtheconversation,acknowledgethatyouwillbeusingtheguide:“ImayrefertothisConversationGuide,justtomakesurethatIdon’tmissanythingimportant.”
• Introducetheideaandbenefits
Orientthepatient “I’dliketotalkaboutwhatisaheadwithyourillnessanddosomeplanningandthinkinginadvance.
Thisispartofthewaywecareforpatientsatthisstageofillness.
Weliketodiscusstheseissueswhenpatientsaredoingwellandwearenotinacrisis.”
Statebenefitandsupport
“Talkingaboutitnowallowsallofustimeandspacetotalkandthinktheseissuesthrough,andtoincludeyourfamilyinourdiscussion.
Itmeansyoudon’thavetomakeanydecisionsifyou’dprefernotto,becausewehavetime.
Wewanttohelpyoustayincontrolofdecisionsaboutyourcare,andtoeasethingsincaseyourfamilyhastomakedifficultdecisionsonyourbehalf.”
• Askpermission Givethepatientcontrol
“IsthisOK?Ifnotokay,wecertainlydon’thavetodoittoday,butIwillbringitupagainforustotalkaboutlater.”
“I’dliketotalkaboutwhatisaheadwithyourillnessanddosomeplanningandthinkinginadvance
aboutwhatisimportanttoyousothatIcanmakesureweprovideyouwiththecareyouwant.Is
thisOK?”
“Thiswillhelpwithdecisionsthatwillneedtobemadeinthefuturewithyouoryourfamily.”
Don’tforgetthereisaversionoftheguideyoucan
usewithfamilyorasubstitutedecisionmaker.
Page8 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
Strategiesforcommonscenarios
• Usethiscontenttosupportyourlearninginanticipationofapatientconversation,orasfollow-upafterachallenginginteraction.
• KEYIDEASandSTRATEGIESprovideamixofapproachesandsuggestedlanguage.• Thefollowingpanelsofferguidanceforscenariosthatcanbechallengingforclinicians.
Patientsays:“Idon’twanttotalkaboutit”
KEYIDEAS
Exploringwhyapatientdoesnotfeelabletotalkabouttheseissuescanprovidevaluableinformationthathelpsyouprovidegoodclinicalcare.
Manypatientsareambivalentaboutreceivinginformation.Theymaywantitbutbescaredofwhattheywillhear.Yoursteadinessandcalminapproachingtheseissueswillhelpthepatientfeelthattalkingaboutitispossible.
Thereisa“differentialdiagnosis”ofnotwantingtotalkaboutitthatincludes:
• Patienthasintensefearsaboutthefutureandaboutdyingthatareoverwhelming—ifthisisthecase,findingawaytograduallyintroducethesubjectmayhelpthepatientbebetterpreparedforreality.
• Patientneedsmoresupport(e.g.,fromafamilymember)toaddresstheseissues.
• Thisisabadtimebecauseofotherdifficultevents/stressors(e.g.,symptoms,otherlifestressors).
• Patienthasananxietydisorderthatmakesitdifficulttotoleratetheanxietyofadiscussion.
TRYTHESESTRATEGIES
• Explorepatient’sreasonsfornotwantingtodiscussthis:“Helpmeunderstandthereasonsyouwouldprefernottotalkaboutthis.”
• Elicitinformationabouthowpatientthinksaboutplanningforthefuture:“I’dliketounderstandwhatkindofthinkingandplanningyouwouldfindhelpfulaswethinkaboutwhatisaheadwithyourillness.”
• Askaboutthepositivesandnegativesofdiscussingtheseissues.
• Remindpatientthatgoalistoinitiatediscussion,nottomakedecisions.
• Ifpatientisambivalent,acknowledgeornametheambivalence—alsohowdifficultthesituationis:“Ihearyousayingyouknowitisimportanttodosomeplanningandalsothatyouworrythisprocesswillbetoooverwhelming.”
• Ifpatientexpressesintenseanxietyaboutdying,explorespecificsorconsiderreferraltopalliativecare.
• Use“Iwish”statements(e.g.Iwishthatthingswerebettersowedidn’tneedtotalkaboutthis).
• Informpatientthatyouwillbringthisupatasubsequentvisit;delayingtheconversationuntilmoresupportisavailablecanhelp.
• Acknowledgingpatientstressandaplantoreturntotheseissueslatercanbehelpful.
• Ifpatientexpressesmoreglobalanxiety,explorepatient’sexperienceofanxietyinanon-threateningwayandconsidermentalhealthreferral:“Areyousomeonewholivesontheanxioussideoflife?”
Alsoconsiderreferraltosocialwork,counsellingorspiritualcare.
Maydelayuntilafamilymembercanbepresentduringthe
conversation.
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page9
Strategiesforcommonscenarios
Patientsays:“I’mgoingtobeatthis”
KEYIDEAS
“Beatingthis”hasmanymeanings.Explorethem.
Clinicianshavethepowertoreshapethemeaningof“beating”theillness.
Patientswhoareinsistentthattheywill“beat”aprogressingillnessareusuallyterrified.Patientsdenywhentheirbacksareagainstthewall.
Helppatientfocusonadditionalhopesbeyondsurvival.
Ifpatientisinaparticularcrisisthatmaygetbetter,itisoftenbettertoavoidaddressingdenialinthatmoment.Waituntilthepatientisinalessstressedframeofmindtoaddresstheirdenial.
Considerstrategiestoreduceanxiety(e.g.relationshipbuilding,encouragementofincludingfamilymembers,offertodiscussmedicationadjustmentswithpatient’sphysicianornursepractitioner),whichmaymakefuturediscussionslessanxietyproducing.
TRYTHESESTRATEGIES
• Alignyourselfwithpatientbyusing“Iwish”statements:“IwishIcouldpromisethatwecouldbeatthisillness,butIcan’t.WhatIcanpromiseisthatwearegoingtoleavenostoneunturnedinourefforttocontrolyourdiseaseandhelpyoulivethewayyouwanttolive.”
• Somepatientswanttobeseenasfightersbybeatingtheirdisease.Showrespectforpatient’sfightingspirit:“Ithinkyouhavethecapacitytocontinuetobeafighternomatterwhathappenswithyourdisease.Let’strytothinktogetheraboutwhatotherthingsyoucouldfightforifyoucan’tbeatthecancer/yourdisease”(e.g.,byhelpinglovedonesdealwithhardrealities,byparticipatinginaclinicaltrial)
• Focusonpatientstrengths:“Icanseewhatastrongforceyouareforyourfamily.Ithinkthereisalotyoucandotohelpthemdealwiththisawfulsituationwithyourillness,byhelpingtopreparethem.”
• Acknowledgepatient’sdesiretobeattheirdisease,butpersistinexploringissuescommoninworseningdiseaseandmovingtheconversationforward:“Weshouldhopeforthebestandpreparefortheworst”
Forpatientswhohavemisinformationormisunderstandingsoftheirunderlyingillness,gentlyclarifyinformationorensureconnectionofthepatientwiththeirproviderforclarifyingconversationsoftheirillnessanditscourse.
Page10 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
Strategiesforcommonscenarios
Patientisnotreadytomakeadecision
KEYIDEAS
Patientsneedtimetoabsorbandintegrateinformationandtopreparetomakedecisions.
Reassure thepatientthatdecisionsarenoturgentandencourage themtotalkwiththeirfamilies.
Forpatientswhoaredecliningrapidly,sharinginformation(includingtheclinician’sconcern),andemphasizingthatdecisionsarebestmadesoonmayhelpthepatientmoveforwardinconsideringtheseissues.
TRYTHESESTRATEGIES
Reassurepatientthereistimetothinkthingsthrough:“Ibroughtuptheseissuesearlysothatyouwouldhavetimetothinkaboutwhat’simportanttoyou.I’mnotworriedthatanythingwillhappeninthecomingweeks.”Letthepatientknowyouwillbringthisupagain.
• Encouragediscussionwithfamily:“Thesearedifficultdecisionsandshouldinvolveyourfamily.Irecommenddiscussingitwiththemandthenustalkingaboutitagainatyournextvisit.”
• Ifthepatientisdecliningrapidly,acknowledgethisandfocusonprovidingcarealignedwithpatientwishes:“Iamworriedyourdiseaseisgettingworse.Ifthisiscorrect,I’dliketohelpyouthinkthroughsomeofthedecisionsyoumaybefacedwithsoon.”
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page11
Strategiesforcommonscenarios
Patientexpressesintenseemotion(Tears)KEYIDEAS
Dealingwithemotionisoftenapreconditionforeffectivelyaddressingseriousillnessdecisions.
Tearsandotherstrongemotionsarenaturalwhendiscussingseriousillnessissues.
Whenpatientsexpressstrongemotion,itistherapeuticforyoutolistenevenifyoucan’t“fix”thesituation.
Titrationbasedonpatientresponseswithgentleguidanceallowsforwardmovementwithoutthepatientbeingoverwhelmed.
Sometimes,backingoffisagoodtemporarystrategy.Staycalm.
Patientsareoftenfrightenedofalienatingtheirclinicianbycrying–reassuranceandstayingpresentcanmitigatethis.
Mostpeoplefeelbetterwhentheyhaveachancetoexpressfeelings.
TRYTHESESTRATEGIES
• Allowsilenceforpatienttoexpressfeeling.
• Namethefeeling.
• Providenon-verbalsupport.Offertissues,orputahandonashoulder.
• Askpatienttodescribewhatthetearsareabout:“Helpmeunderstandwhatismakingyousosad/upset/scared.”
• Explorefeelings:“Tellmemore.”
• Expressempathy:“Iamsorrythatthisissosad/upsetting/scaryforyou.”
• Providesupportandencouragement:“Iknowthisisahardconversationtohave,butIthinkitisimportantandthatitwillhelpmakesurethatwehaveaback-upplanincaseweneedone.”
• Obtainpermissiontoproceed:“Canweseeifwecantalkabitmoreaboutthis?”
• Demonstrateandexpressrespectforpatients’emotionalstrengths:“IcanseeyouareapersonwhofeelsthingsstronglyandIhavealotofrespectforyourstrengthinstayingwiththisharddiscussion”
• Ifnecessary,offertotakeabreakandproceedlater:“Icanseethatthisisareallytoughconversationforyou.Let’stakeabreakfortodayandtrytotalkaboutitnexttime.”
• Ifemotionisveryintenseandpersistent,explorewhetheramentalhealthreferralwouldbehelpful.
• Avoidgivingfalseorprematurereassurancetocontainpatientdistress.
• Avoidofferinginformationthatisnotexplicitlysought.
“Doyouwanttotakeabreakandtalkaboutitnext
time?”
ExplorewhetherareferraltoSocialWork,Counselling,orSpiritualCarewouldbehelpful.
Page12 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
Strategiesforcommonscenarios
Patientexpressesanger
KEYIDEAS
Staycalm.
Angerinthissettingisusuallyaboutthemessage(e.g.,“youaregettingsicker”)ratherthandirectedatyoupersonally.
Givingpatientsanopportunitytotalkabouttheiranger,andrespondingnon-defensively,tendstobetherapeutic.
TRYTHESESTRATEGIES
•“Iwish”responsesarehelpful:“Iwishthiscancer(disease)hadrespondedtothetreatmentalso.”
• Exploreangryfeelings,butuselessintenselanguage:“Icanseethisisreallyfrustrating.Tellmemoreaboutthefrustrationsyou’vebeenexperiencing.”
• Allowpatientanopportunitytoexplorewhatitmeanstothemtobetalkingabouttheseend-of-lifeissues:“IambringinguptheseissuesbecauseIwantusbothtobepreparedforwhatisahead.Butwhatisitlikeforyoutohavemebringthemupatthispoint?”
• Encouragepatienttosaywhatisontheirmind:“Ashardasitis,IwanttolearnasmuchasIcanaboutwhatthisislikeforyou,includingaboutyourfrustrations.”
• Respondnon-defensively:“IcanunderstandhowyoucanfeelthatIletyoudown,innotbeingabletofindtherightchemotherapy.Iwillstillworkhardtodomybestforyou.”
Patientisreluctanttostopdisease-modifyingtreatment
KEYIDEAS
“Iwishthatthingsweredifferent;Iworrythatthat’snotwhatishappeninghere.”
TRYTHESESTRATEGIES
Explore patient fears about stopping active treatment:“Can you tellmewhatyourconcerns areabout stoppingtreatmentX(e.g.chemotherapy,milrinone,etc.)?”
Beclearthatmoretreatmentmaynotmeanmoretime:“Somestudiessuggestthatstoppingchemotherapymaynotshortentime,andyoumayfeelbetter.”Checkpatientunderstanding,asthisinformationmaybecounterintuitivetopatients
Ifclinicallyindicated,makeaclear,directrecommendationagainstfurtherdisease-modifyingtreatment.Reassurepatientthatyouwillcontinuetobetheirdoctor:“Iwillcontinuetobeyourdoctorifyouchoosetostopactivetreatment.”Don’tsayyoucanreconsiderdisease-modifyingtreatmentlaterifyoucan’t.
Onceitisclearthereisnobenefitfromevidence-basedinterventions,itisimportanttodiscusstheoptionofstoppingdisease-modifyingtreatment.Patientsmaynotwanttostoptreatmentsthataredirectedattheirunderlyingdiseasebecausetheyfearlossofrelationshipwiththeirteam,worseningdisease,orimmediatedeath.
Poorfunctionalstatusisakeyprognosticindicatoroflimitedlifeexpectancyandwarrantsdiscussionofstoppingdisease-modifyingtreatment.Donothedge(“Well,itmight…”);evidencesuggeststhatpatientshearandrememberpositivebutnotnegativemessages.
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page13
Strategiesforcommonscenarios
Iftimingisrightforacodestatusconversation
KEYIDEAS
Discussionofcodestatusshouldalwaysfollowabroaderdiscussionofprognosisandvaluesandgoals.
PatientsareoftenoverlyoptimisticabouttheoutcomesofCPR.
In-hospitalCPRsurvival,overall1
• Immediatesurvival:30-45%
• Survivaltodischarge:11-17%
Theabovestatisticshavenotchangedin40years.
InhospitalCPRsurvivalforcancerpatients2:
• Overallsurvivaltodischarge:6%
• Localizeddisease:10%
• metastatic:5%
• ICU:2%
WithholdinganinterventionlikeCPRcanmakepatientsfeelabandoned.Usingstronglanguage,assurepatientofallthethingsyouwilldo(i.e.intensivesymptomcontrol,emotionalsupportforthemandtheirfamilies,etc.).
1PeberdyMAetal.Resuscitation20032ReisfieldGMetal.Resuscitation2006
TRYTHESESTRATEGIES
•Introducetheconceptofcodestatusdecisionincontextofvaluesandprognosis:“We’vetalkedaboutsomeofthekeyissuesthatareimportantasyougetsicker,andIthinkitwouldbehelpfultogetabitmorespecificaboutthetypesoftreatmentsthatdoanddon’tmakesenseinyoursituation.”
•ExplorepatientunderstandingaboutCPR:“Oneofthequestionsweshouldfigureoutiswhethercardiopulmonaryresuscitationmakessenseforyou.WhathaveyouheardaboutCPR?”
•DescribeCPR:• Correctmisunderstandings• Describewhatitis,therisksandbenefits,and
possibleoutcomes• Sharedataaboutpossibleoutcomes(ifdesired)
“CPRisaprocedureforpatientswhohavediedinwhichweusemachinestotrytorestarttheheartorbreathing.Inpatientswithaseriousillness,itseffectivenessisextremelylow–andeventhosewhocanbebroughtbackinitiallyhavetobekeptaliveonbreathingmachinesandalmostneverleavethehospital.”
•Makearecommendationtohaveafurtherconversationwiththepatient’sphysicianorNursePractitioner:
“Basedonthespreadofyourcancer,thefactthatwehavenomoretreatmentstostopthegrowthofcancer,andthefactthatCPRdoesn’tworkforpatientswithmetastaticcancer,Irecommendthatwefocusintensivelyonyourcomfort,onhelpingyouhaveasmuchtimeaspossiblewithyourfamily,andongettingyouhome.”
•Checkforpatientagreement:“Howdoesthisplansoundtoyou?”
•Sharetheconversationwiththepatient’sprimarycareprovider
•Emphasizethecarethatwillbeprovidedtothepatient:“Iwanttomakesureyouarecomfortableandknowthatwewillmonitoryoucarefully,provideandarrangeforthebestpossiblesupportforyouandyourfamily.”
•Donotsay“Wewilljustgiveyoucomfortcare.”
DonotofferCPRifitisnotclinicallyindicated:InformpatientthattheyarenotacandidateforCPRbecauseitwillnotbeeffectiveandaskthemtoaffirmyourdecision.
Forpatientswithanunderlyingseriousillnessthesurvivalrateis
significantlyreducedbasedontheirillness.
“KnowingwhatisimportanttoyouandwhereyouareinyourillnessandthatCPRdoesn’tworkforallpatientsIrecommendthatwetakethisconversationforwardtoyourphysician/NursePractitioner.Thiswillhelpusmakesurethatyourtreatmentplansreflectwhatisimportanttoyou.”
Page14 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
Discussingprognosis
Time-basedprognosis
KEYIDEAS
Manypatientswantourbestestimateofhowmuchtimetheymayhavegiventheirstageofillness.Cancermayhaveamorepredictableprognosis;lesssoforheart,lung,andkidneydisease.Patientsdonotexpectprecision,buttheyexpecttogivethemtimetoprepareforwhatmaycome.
TRYTHESESTRATEGIES
Discussprognosticinformationasarange:Daystoweeks,weekstomonths,monthstoyears
Acknowledgeprognosticuncertainty:Itcouldbeshorterorlonger.
Supporthope:Iamhopingitwillbeonthelongsideofthisrange.
Functionalprognosis
KEYIDEAS
Formanyconditions,itisimpossibletopredicthowmuchtimeapatientislikelytohave,butitispossibletopredicttheirleveloffunction,whichmayprovidethemwithusefulinformationforplanningandgoal-setting.Providing functional prognosis —outlining what is and is not likely toimprove in the future - helps patientsunderstandwhat their liveswill be likeinthefuture,andallowsthemtomaketrade-offsthatalignwiththeirvalues.
TRYTHESESTRATEGIES
Provideinformationonwhatislikelyandnotlikelytoimprove:“Ithinkthatyourlegswellingmaygetbetter,butIthinkyouwillstillneedoxygenandI’mworriedthatthismaybeasstrongasyoufeel.”
Supporthope:“Ithinkthatyoucancontinuetohavegoodtimeswithyourfamilyandtakepleasureinsmalldailythings.”
Affirmcommitmenttooptimizingfunction:“Wearegoingtocontinuephysicaltherapytogiveyourbodythebestchancepossibletoregainsomestrength.Andwe’regoingtokeeplookingforotheroptionsthatcanhelpyoufeelaswellaspossible.”
Patientswhohavehadatime-basedprognosticconversationwiththeir
physician/NursePractitionermaywantfurtherdiscussion.
Givehoneststatementaboutworseningtrajectory“Patientswith(namethedisease)tendtoexperienceworseninghealth,andmorefrequenthospitaladmissions/interactionswiththehealthcaresystem.”
“I wish things were different, but I think thismight be asstrongasyoufeel.”
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page15
Discussingprognosiscontinued
Unpredictableprognosis(Uncertainty)
KEYIDEAS
Forconditionslikeadvancedheartandlungdisease,whichcanremainstable,slowlydeteriorateovertime,orbringsuddenandlife-threateningcrises,thesescenariosshouldbecommunicatedtopatients.Thisallowsthemandtheirfamiliestoconsidertheirvaluesandpreferenceswithinthiscontext,andtoprepare.
TRYTHESESTRATEGIES
Provideclearinformationaboutpotentialtrajectories:
HeartdiseaseisunpredictableORItcanbedifficulttopredictwhatwillhappenwithyourillness.Peoplecanlivewellforyears,butsometimesthingscanhappenquickly.Ithinkweneedtobepreparedforacrisis,orsuddenevent,inwhichwemaybeconfrontedbysomedifficultdecisions.
Use hypotheticals:IfyourheartfailureORillnessweretosuddenlyworsen,youmaynotbeabletoreturntowhereyouarenowormightneedtobehospitalizedorconsiderintensivetreatments.
Hopeforthebest,planfortheworst:Eventhoughthisisdifficulttothinkabout,IamhopefulthatyouwillhavealotofgoodtimeaheadandthatdoingsomeplanningtogethercanhelpyouhaveasafetynetORaPlanB,incasethingsdon’tgoaswehope.
Page16 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
ClinicianchangesfocustomakingadecisionForexample,theclinicianobservesthatthepatientis“reluctanttostopdisease-modifyingtreatment”,or“timingisrightforacodestatusconversation”.
Talkingaboutmakingadecision
KEYIDEAS
Eitherthepatient,familyorclinicianhasbecomeinvolvedinaconversationthatisaboutmakingadecision(atreatmentdecision).Hereweremindourselvesthatwearetryingtofacilitatealisteningconversation–reroutetheconversationalongthelinesoftheconversationguide(i.e.movediscussiontoaskquestionsaboutworries,strengths,fears).Howyoumakearecommendationcaninfluencethepatient’schoiceandreaction.
TRYTHESESTRATEGIES
Haveyoufollowedtheguide?
Wheredidyougetofftrack?
Trytousetheguidetofindyourplaceintheconversation.
Beclearabouttheirunderstandingoftheirdiseaseandprognosis(i.e.moretreatmentmaynotmeanmoretime):
“Somestudiessuggestthatstoppingchemotherapymaynotshortentime,andyoumayfeelbetter.”
Checkpatientunderstanding,asthisinformationmaybecounterintuitivetopatients.
Explorekeytopics(i.e.patientfearsaboutstoppingactivetreatment):
“CanyoutellmewhatyourconcernsareaboutstoppingtreatmentX(e.i.chemotherapy,milrinone,etc.)?
Makearecommendationtohaveafurtherconversationwiththepatient’sphysicianorNursePractitioner:
“KnowingwhatisimportanttoyouandwhereyouareinyourillnessandCPRdoesn’tworkforallpatientsIrecommendthatwetakethisconversationforwardtoyourphysician/NursePractitioner.Thiswillhelpusmakesurethatyourtreatmentplansreflectwhat’simportanttoyou.”
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page17
Whenitistimetomakeaplan
Makingarecommendation
KEYIDEASMakerecommendationsonlyafteryou’vehadachancetosummarizea“patient’svalues,goals,andprioritiesthatreflectswhattheyhavetoldyou.Howyoumakearecommendationcaninfluencethepatient’schoiceandreaction.
TRYTHESESTRATEGIES
Recommendnextstepsthatarebasedonprognosis,medicaloptionsandpatient’svaluesandpriorities:“Basedontherapidprogressionofyourcancer/ despitetherapy,andyourwishestobeathomeIrecommendthatweenrollyouinhospice,whichsupportspeoplewhowanttobeathomeandwiththeirfamilies,andtoprovideintensivesymptomtreatment.”
Bedirectinmakingyourrecommendation:
Say“Irecommend….”Ratherthanusinga“menu”approachofoptions.
Talkingaboutfamilyinvolvement
KEYIDEAS
Manypatientsprefertohavefamilywishesaboutcareoverridetheirown.Preferencesaboutfamilyinvolvementindecision-makingvaryalot.
TRYTHESESTRATEGIES
• Explore:“Ifyourfamilyhasstrongwishesaboutyourcarethataredifferentfromyours,howwouldyoulikeustodecideonyourcare?”
Familyinvolvementindecisionmakinghelpsthemprepareforthepatient’sdeath.Preparationisassociatedwithbetterbereavementoutcomes.
Encouragethepatienttoinvolveandpreparehis/herfamily:“Iknowthesearereallydifficultissuestotalkabout,becauseyoucaresodeeplyforyourfamily.But,involvingthemindecisionshelpsthemprepareandcope.”
Page18 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
The“Wish/Worry/Wonder”framework
”
Iwish…Iworry…Iwonder….
KEYIDEAS
Iwishallowsforaligningwiththepatient’shopes.
Iworryallowsforbeingtruthfulwhilesensitive.
Iwonderisasubtlewaytomakearecommendation.
TRYTHESESTRATEGIES
• Alignwithpatienthopes,acknowledgeconcerns,thenproposeawaytomoveforward:“IwishwecouldslowdownorstopyourcancerandIpromisethatIwillcontinuetolookforoptionsthatcouldworkforyou.”
• “ButIworrythatyouandyourfamilywon’tbepreparedifthingsdon’tgoaswehope.IwonderifwecandiscussaPlanBtoday.”
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page19
Managingtheconversation:Practicalchallenges
• Timepressurescanbeabarriertoeffectiveend-of-lifeconversations.• Planforenoughtimetohaveameaningfulconversationorplantotakeuptheconversationatanother
time,asneeded.• SICareiterative,repetitive,andrequireateambasedapproachovertime,whereyoumaybeinvolved
atapointintimebutthatyourconversationscontributetoanoverallshapingofapatient’sillnessjourney.
• Plantohavetherightpeoplepresentortohaveaplantocommunicateconversationswithothercareteammembers(documentingtoothermembersoftheteam,invitingresident/physician,family,etc).
• Usethesestrategiestomakethebestuseofyourtimewitheachpatient.
Keepingpatientsontrack
KEYIDEAS
Patientswanderwhentheyareanxiousorhaveotherhighpriorityissuestodiscuss.Patientsusuallyrecognizethatyouhaveanagendaandneedtofulfillitwithinalimitedtimeframe,ifreminded.
TRYTHESESTRATEGIES
Acknowledgethatthisisatoughconversation,andgentlybringpatientbacktotopic:“Iknowthisishardtotalkabout,butI’dliketoseeifwecanclarifyacoupleofthingsaboutwhatyourworriesareaboutthefuture.”
Remindpatientoftimeconstraints:“Iwishwehadmoretimetotalkaboutyournewdog,butIwouldliketogetbacktothinkingaboutsomefutureplanningthatIthinkweneedtodo.”
• Interruptgently:“Mrs.Smith,weneedtogetbacktomyquestionaboutyourgoalsiftimeisgettingshort.”
Managingyourtime
KEYIDEASTheconversationcanstillbeeffectivewhenspreadoverseveralvisits.
TRYTHESESTRATEGIES
DelegatesomequestionstoyourNursePractitionerorSocialWorker,asappropriate.
Considergoingthrough2questionspervisit.
Makesureeveryonedocumentsthediscussioninthepatient’smedicalrecord.
KnowwheretodocumentinyourHealthAuthority.
Page20 SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians
Patientsays:“Iamfeelingterribletoday,whatifIneverfeelbetterthanthis?"KEYIDEAS TRYTHESESTRATEGIES
Documentingtheconversation
KEYIDEASAvoidusingthecomputerwhiletalkingtothepatient.
TRYTHESESTRATEGIES
Makenotesontheguideifyouneedtorememberspecificthingsthepatientsays.
Ifyoudocumentwhiletalking,makefrequenteyecontactwithpatient.
Tellthepatient:“Thisisimportanttogetright,soI’mgoingtomakeafewnotes,aswetalk.IsthatOKwith
you?”
Unplanned/Informalconversations:usingtheguideintheprocessofcare
“Inthemoment”,usetheguidetohavealisteningconversationthathelpstheteamunderstandthepatient’sperspectivemoreclearly.Bepreparedtomove“in”and“out”oftheSIC,especiallyifitoccursintheprocessofcare,i.e.youmayneedtomove“out”ofthelisteningconversationtodealwithproblemsthatariseinthe
processofcareandduringtheSIC.
Dealwithpresentandurgentissues(i.e.givepainmedication,finishdressingchange)andthenmovingback“in”andfocusontheseriousillnessconversation:“Ithinkwewerediscussingyourfears,couldwegetbacktothatnow?Ithinkthisisareallyimportantconversationforustohavetoday.”
Patientsays:“WhatwillhappenthenexttimeIamadmittedtohospital?Ijustdon’twanttogotoICUagain,itwasawful.”
SuggestsettingupatimetohaveaSICwitheitheryourselforyourself,togetherwithanothermemberofthecareteam.
KEYIDEAS TRYTHESESTRATEGIES
Rememberyouaretryingtocreatea“listeningconversation”,soavoidsolvingproblemsandmakingdecisionsinthisconversation.Askclarifyingquestions:“WhatwastheworstpartoftheICU/hospitalstayforyou?”
SeriousIllnessCareProgram—ReferenceGuideforInterprofessionalClinicians Page21
ThismaterialhasbeenmodifiedbytheSeriousIllnessConversationNurseWorkingGroup(Canada).Theoriginalcontentcanbefoundathttps://portal.ariadnelabs.organdislicensedundertheCreativeCommonsAttribution-NonCommercial-ShareAlike4.0InternationalLicense,http://creativecommons.org/licenses/by-nc-sa/4.0/
SeriousIllnessConversationNurseWorkingGroup(Canada):
ElizabethBeddard-Huber,RN,MSN,CHPCN(C),BCCentreforPalliativeCare,VancouverBCSusanBrown,RN.,BScN.,MScN.,GNC(c)ClinicalNurseSpecialistResidentialCare&AssistedLiving,FraserHealthBCVickiKennedy,RN,BN,MN,CREClinicalNurseSpecialistPalliativeCare,InteriorHealth,LakeCountry,BCJenniferKryworuchkoPhDCNCC(C)RN,UBCNursing&CentreforHealthServicesandPolicyResearch;BCCentreforPalliativeCare,VancouverBCMiaMarles,MSN(candidate)RN,St.Paul’sICUProvidenceHealth&UBCNursing,VancouverBCDellaRoberts,RNMSN,CHPCN(C)CNS,Palliative&EndofLifeCare,VancouverIslandHealthAuthorityPatriciaStrachanRNPhD,McMasterUniversity,SchoolofNursing,HamiltonON
Usefultoolsfordifficultconversations• http://www.health.gov.bc.ca/library/publications/year/2013/MyVoice-
AdvanceCarePlanningGuide.pdf• SpeakUp:http://www.advancecareplanning.ca• CPRDecisionAids:(http://www.advancecareplanning.ca/resource/cpr-decision-aids/)• CPRDecisionAid:
(http://thecarenet.ca/docs/CPR%20Decision%20Aid%20revised%20to%20PDF%20brochure%20Nov%203%202009.pdf)
• OttawaPersonalDecisionGuide:(https://decisionaid.ohri.ca/docs/das/OPDG.pdf)• TheConversationProject:(http://theconversationproject.org)
