1819674+-+Marte+Marie+Wallander+Karlsen.pdf (664.9Kb)

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Patient involvement in micro-decisions in intensive care

Marte Marie Wallander Karlsen

^a,b,c,

*, Mary Beth Happ

^d

, Arnstein Finset

^b

, Kristin Heggdal

^a

, Lena Günterberg Heyn

^a

aLovisenbergDiaconalUniversityCollege,Lovisenberggt15b,0456Oslo,Norway

bInstituteofBasicMedicalSciences,FacultyofMedicine,UniversityofOslo,Postboks1100Blindern,0137Oslo,Norway

cDepartmentofEmergenciesandCriticalCare,OsloUniversityHospital,Postboks4950Nydalen,0424Oslo,Norway

dTheOhioStateUniversity,CollegeofNursing,352NewtonHall,1585NeilAvenueColumbus,OH43210USA

ARTICLE INFO

Articlehistory:

Received29August2019

Receivedinrevisedform17April2020 Accepted20April2020

Keywords:

Artiﬁcialrespiration Communication Decisionmaking Hermeneutics Intensivecare Patientexperience Patientparticipation

Patient–providercommunication Videorecording

ABSTRACT

Objective:Theobjectiveofthisstudywastoexplorehowbedsidemicro-decisionsweremadebetween consciouspatientsonmechanicalventilationinintensivecareandtheirhealthcareproviders.

Methods:Usingvideorecordingstocollectdata,weexploredmicro-decisionsbetween10mechanically ventilatedpatientsand60providersininteractionsatthebedside.Weﬁrstidentiﬁedthetypesofmicro- decisionsbeforeusinganinterpretativeapproachtoanalyzethedecision-makingprocessesandcreate prominentthemes.

Results:Weidentiﬁedsixtypesofbedsidemicro-decisions;non-invited,substituted,guided,invited, sharedandself-determineddecisions.Threethemeswereidentiﬁedinthedecision-makingprocesses:1) being an observer versus a participant in treatment and care, 2) negotiating decisions about individualizedcare(suchastrachealsuctioningormedication),and3)balancingempoweringactivities withtheneedforenergyrestoration.

Conclusion: This study revealed that bedside decision-making processes in intensive care were characterizedbyahighdegreeofvariabilitybetweenandwithinpatients.Communicationbarriers inﬂuencedpatients’abilitytoexpresstheirpreferences.Anincreasedunderstandingofhowmicro- decisionsoccurwithnon-vocalpatientsisneededtostrengthenpatientparticipation.

PracticeImplications:Weadviseproviderstomakeanefforttosolicitpatients’preferenceswhencaring forcriticallyillpatients.

1.Introduction

Patientsonmechanicalventilationinintensivecareunits(ICUs) experiencecommunicationbarriersduetotheendotrachealtube ortracheostomy[1–3].Patientshavedescribedtheexperienceof tryingtocommunicatewithoutavoiceasfrustrating,terrifying, [4,5]andassociatedwithnegativeemotions,suchasanxiety,anger [6–9]andfeelingpowerless[4,10].CurrentICUclinicalguidelines [11–13]recommendthatventilatedpatientsshouldbeconscious, spontaneouslybreathing,andmobilizedasquicklyaspossibleina family-engagedenvironment[13,14].Thishasledtoanincreasing number of conscious patients on mechanical ventilation.

Previouslythenormwastousesubstantialamountsofsedatives, makingpatientsunabletocommunicate.Therewasalsolessfocus onearlyweaningfromventilationandincreasedphysicalactivity, compared to current recommendations [15–17]. A one-way communication style dominated bedside interactions, with healthcareprovidersbeingthemostactiveparticipants[2,18].In a verycritical phase of theirlives,patientsexperiencereduced abilitytoparticipateindecisionsabouttheirtreatmentandcarein ICUs[19–21].

Intensive care treatment is complex and fraught with ambiguityanduncertainty,[22,23]andbedsidedecision-making isoftenbasedonlimitedinformation[22].Ofstadetal.[24]deﬁne treatmentdecisionsasanexpressionfromeitheraproviderorthe patient tocommit to a particularcourse of clinically relevant action, implying a shared understanding of agreement and patientconsent. A decision can alsobe towithholdtreatment ortowaitforfurtherassessmentofthesituation.TheAmerican CollegeofCriticalCareMedicineandAmericanThoracicSociety describesshareddecision-makingas“acollaborativeprocessthat

*Correspondingauthorat:LovisenbergDiaconalUniversityCollege,Lovisen- berggt15b,0456Oslo,Norway.

E-mailaddresses:[email protected](M.M.W.Karlsen), [email protected](M.B.Happ),arnstein.ﬁ[email protected](A.Finset), [email protected](K.Heggdal),[email protected](L.G.Heyn).

https://doi.org/10.1016/j.pec.2020.04.020

ContentslistsavailableatScienceDirect

Patient Education and Counseling

j o u r n al h o m e p a g e : w w w . el s e v i e r . c o m / l o c a t e / p a t ed u c o u

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allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking into account the best scientiﬁcevidenceavailable,aswellasthepatient’svalues,goals and preferences” [23, p. 190]. Kukla [25] highlights the complexity of making autonomous decisions, and how decision-making relies on previous history, relationshipswith the providers, and normative expectations of the patient role;

therefore,theymustbeseen aspartofalargercontext.Aself- determineddecisioncanevenbetoaskprovidersorrelativesto makethedecision.

Micro-decisions[26], small-scaledecisionsmade numerous timesa dayat a patient’sbedside,are oftennotperceivedas treatment decisions. Micro-decisions in ICUs may relate to mechanical ventilation (weaning attempts from ventilatory support, use of tracheostomy speaking valve), symptom management, mobilization, or other procedures (i.e. wound care).

Thereisapaucityofknowledgeregardingmicro-decisionsin ICUs, compared to other decision-making [3,27], such as life- sustainingtreatmentdecisions.Amorethoroughunderstandingof the interaction betweenpatients and providers could improve patient participation. In this study we explored how micro- decisionsweremadebetweenconsciouspatientsonmechanical ventilation and healthcare providers in intensive carewith the followingresearchquestions:

Whattypesofmicro-decisionsaremadebetweenpatientsand healthcareprovidersinintensivecare?

In what ways doesdecision-making occur at the bedside in intensivecare?

Howarepatientsonmechanicalventilationengagedindecision- making?

2.Methods

2.1.Studydesign,settinganddatacollection

A phenomenological-hermeneutical approach [28–30] was chosento describe and interpret the participants’ interactions andthephenomenaofmicro-decisionsasweobservedthem.This entailsmovingbetweendescriptionsandinterpretationstowards thecontentofmeaninginthedatacollectedtoachieveanewand deeper understanding of the observed interaction [28–30].

Hence, we used video recordings to collect data, enabling repeatedaccesstothesubtledetailsofnaturalinteraction[29].

It was necessary to capture non-vocal communication since mechanically ventilated patients are unable to produce vocal speech. The study wasconducted in two ICUs at a university hospitalinNorway.Theunitshad10and11beds,respectively.

Patientshadsingleroomsandanurse wasalwayspresent.We installed two surveillance cameras and two sound-recording devicesineachpatient’sroominthemorningandleftthemtorun continuously for 3–4h. The ﬁrst author stayed outside the patients’rooms makingﬁeld notes. Wecollected demographic datafromeachpatient.

2.2.Participants

Wepurposivelyrecruitedpatientsreceivingmechanicalventi- lation between2016–2017. The inclusion criteriawere patients over theage of 18, mechanically ventilatedfor at least 48h, a RichmondAgitationandSedationScale[31]scoreof0–2,without diagnoseddeliriumfortheprevious24h,andnegativelyscreened fortheConfusionAssessmentMethodfortheICU(CAM-ICU)[32]

atstudyenrollment.Patientswereexcludediftheydidnotspeak

Norwegian, had severe visual,hearing, or cognitive deﬁcits; or wereinend-of-lifecare.

2.3.Dataanalysis

Thefirstauthorwatchedthevideosnumeroustimestobecome familiar with the data. The segments of the video recordings relatedtomicro-decisions(theseriesofscenesthatformadistinct narrative unit, connected by the continuity of time, where a specificdecision-makingprocessoccurs),werefirstidentifiedand transcribed.WeusedOfstadetal.’s[24]definitionofdecisionsto identifythebedsidemicro-decisions.Wethenperformedatwo- step analysis, first grouping the types of micro-decisions that occurred and then analyzing the meaning of the decision processes.

2.3.1.Analysisofthetypesofmicro-decisions

Weobservedthatdecisionsevolvedinseveralways,leadingto patients’involvementondifferentlevels.Eachidentiﬁedmicro- decisionsegmentwasthereforeanalyzedaccordingtoastepwise modelforshared-decisionmaking(initiationofdialogue,presen- tationofoptions,explorationofpatientpreferences,andmaking thedecision)[33].Wealsodescribedothercharacteristicssuchas how the communication unfolded, who was present and what occurred in the room [29]. The situations were compared for commonalitiesanddifferencesandeventuallygroupedintotypes ofdecisions.Observednon-medicalmicro-decisionswereexclud- edfromtheanalyses(i.e.morningbathorbed-positioning).This analysis ledto a typology of micro-decisions, presented in the results.WeusedMangoldInteract¹16.4toorganizethevisualdata [34].

2.3.2.Analysisofthemicro-decisionprocesses

Theinteractionsbetweenpatientsandthehealthcareproviders wereinitiallyinterpretedthroughnaïvedescriptionsofwhatwe observed,focusingonbothverbalandnon-vocalactions[28–30].

Wethenanalyzedthemeaningintheinteractionbeforecreating subthemesandthemes.AnexampleofthisisdisplayedinTable1.

Theﬁrstauthorattainedadeeperunderstandingofthewrittenand visualmaterial,movingbetweenpartsofthedataandthedataasa whole [30], and by watching the selected video segments repeatedlyandrevisingthewrittenanalysisaccordingly.

The finalanalytic step involveda review of all thetypes of micro-decisions and the themes to ensure coherence between presentation andunderstanding of thedataas thesewere two separate analytic phases.Thefirst and lastauthors watchedan entirethree-hourvideorecordingofonepatientseparately,and discusseddifferencesintheirinterpretationstoensurerigorand reflection.Theotherauthorswatchednumeroussegmentsofthe micro-decisionsandparticipatedintheanalysisanddiscussionof findingsviaregularmeetings.Malterud’sconceptofinformation powerwasappliedtoevaluatethedatafromoursample[35].The informationpowerwas consideredhighastheaimofthestudy wasspecificandaconsiderableamountofinteractionrelevantto the research questions was collected from key informants.

Saturationwasreachedduringtheanalyticphasebytheamount andmeaningofmicro-decisionsthatoccurredduringthe30hof recordings[29].

2.4.Ethicalconsiderations

TheSouth-EasternRegionalCommitteesforMedicalandHealth ResearchEthicsinNorwayapprovedthisstudy(2015/2012).We performeditinaccordancewiththeCodeofEthicsoftheHelsinki Declaration[36].Videoswerestoredonadigitalserverfollowing theuniversityhospital’sregulations.Participationwasvoluntary,

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and thevideo recordings couldbeturned off at any time. The patientsconsentednon-vocally(e.g.,bynodding)duringtheirICU- stay. Each participating patient’s ability to understand the information provided was systematically ensured (through the useofCAM-ICU,assessmentofcommunicationskillsanddialogue withthenurses). Eachpatientwas alsoinformedorallyseveral timesaboutthestudy.AfterICUdischarge,theysignedawritten consentform.Thenurseswereaskedtobesensitivetoindications fromthepatientstostoptherecordings.Theprovidersinvolvedin thecareandtherelativeswhovisitedduringthevideorecordings receivedoralandwritteninformationandsignedawrittenconsent form.

3.Results

Fourteenpatientswereinvited,andtenagreedtoparticipate inthestudy(sevenandthreefromrespectiveICUs).Noprovider declinedparticipation.Avisitingrelativewaspresentin twoof the videos. In total, we collected 30h and 23min of video recordings ranging from 1h and 7min to 3h and 30min per patient.

The patientswere ﬁve females and ﬁve males of European ethnicityrepresentingavarietyofdiagnoses.Themeanagewas 53.6 years (range: 36–72). The median length of days on mechanicalventilation beforeinclusion was20 days(range: 4– 68).Themeanseverityofillnessscore(SAPSII)was42.0(Standard deviation [SD]: 13.1). More detailed patient demographics are publishedelsewhere [37]. Sixtyproviders (29nurses,18 physicians, 9 physiotherapists, and 4 radiographers) cared for the patientsduringthevideorecordings.Theinteractionsvariedfrom a few minutes to being present throughout the entire video recording. Most often, physicians visited the patient once (5–25min), physiotherapists visited for mobilization routines (10–40min), radiographers visited for X-rays (5–10min), and nursesspentmostofthetimeatthepatients’bedside.

3.1.Typesofmicro-decisions

We extracted142 segments from the video recordings that involvedmicro-decisions(5–28segmentsper patient).Patients’ involvement in the decision-making was grouped into six communicativepatterns.Table2presentsthetypesofdecisions andthecriteriaforeachgroupaswellasexamplesofthemicro- decisionsthatweremadewithineachgroup.

Decisionsaboutthesametreatmentorprocedureunfoldedin differentwaysandvariedfrompatienttopatient.Morethanhalfof thedecisionsweobservedwerenon-inviteddecisions,meaning the decisionswere both initiated and decidedby the provider, without explicitlyasking for thepatient’s preference. Approxi- mately one quarter were invited decisions meaning that the patientswereaskedtoexpresstheiropinionaboutthedecisionat stake.

3.2.Bedsidemicro-decision-makingprocesses

Three themes were identiﬁed after observation and further analysisofthepatients’andhealthcareproviders’interactions:1) beinganobserverversusaparticipantintreatmentandcare,2) negotiatingdecisionsaboutindividualizedcare,and3)balancing empoweringactivitieswiththeneedforenergyrestoration.The ﬁrst themeilluminatesthepatients’involvementin themicro- decisions, the second theme describes how the providers and patientsinteractedtoachieve sometype ofagreement, andthe thirdthemeillustrateshow theprocedures andintenseactivity werebalancedwithrest.Thethreethemesarepresentedbelow andillustratedwithnarrativeexamples,andreferencestotypesof decision-making.Examplesoftypesofdecisionsacrossthemesare giveninappendix1.

3.2.1.Beinganobserverversusaparticipantintreatmentandcare Patients’ preferences and desires were manifested via non- vocaltechniques,suchaseyegazes,formingwordswiththeirlips, writing,grimacing,orpointing.Thepatients’capabilitytoexpress desires non-vocally onone hand, and thedegree towhich the providerfacilitatedthiscommunicationontheother,inﬂuenced thedegreeofpatients’involvementinthemicro-decisions.Table3 illustrateshowpatientDina¹ becameanobserverratherthana participantinthedecision-makingabouttheventilatorstrategy.

Becausetheproviderbothinitiatedandmadethedecision,and Dina was informed but not asked about her preferences, we categorizedthisasanon-inviteddecision.

In other situations, the patients asked treatment-related questions,expressedtheirpreferences,orsignaledbypointing (e.g., backto thebed). Theyexpressedreluctancebyshaking theirheadsormovingrestlesslyaroundinthebed,whichwe Table1

Thisisanexampleofamicro-decisionandhowtheprocessunfoldedbetweentheproviderandthepatient.Eachtypeofmicro-decisionweobservedisidentiﬁedand transcribedintheleftcolumn.Then,wecapturedtheessenceoftheobservationinthenextcolumnbeforecreatingpreliminarysubthemes.Thesubthemeswerethen groupedintothethreethemesasdescribedintheanalysis.Wealsodocumentedthetimethesegmentoccurredtobeabletorefertoit.

Micro-decision Interactionasobserved Essenceoftheinteraction Subthemes

Theneedfor trachealtube suctioning

PatientRebeccaincreasesherrespiratoryrateanditsounds likethereismucusinthetube.NurseElizabethtellsher.“I believeweneedtosuctionbecauseyouseembotheredby mucusinyourlungs.”NurseElizabethturnsonthe suctioning.“Shouldwegodownandremoveit?”Sheasks thisassheinsertsthecatheterdownintothetracheostomy.

Rebeccalooksdownandformswordswithhermouthand startstocoughseveraltimes.“breathcalmly,”Elizabeth says.AftersomesecondswhileRebeccabreathesheavily, Elizabethsays“Isitbetter,stillsomeleft?Thereisstillsome left.Shouldwetryoncemore?Regainyourbreathﬁrst.”

Aftersomesecondsofrest,againElizabethsays,“Shouldwe trytomakeyoucoughproperlyandIwillgodown?”She performsthesuctioning.AfterthissuctioningRebecca coughsseveraltimesandalsospitupsomemucusfromher mouthwhichElizabethremoveswithsomepaper.“Thereis someleft,butIthinkitmustcomegradually,”shesays.

Suctioningtorelievesymptoms(decidingtogether),butitis stillultimatelythehealthcareprovider’sdecision

Information

01:31:00 Invitationtoparticipate

indecisions Decisiontowithdrawfromperformingsuction

Guidingthepatient towardsagreeingtothe decision

Guidingthepatienttowardstrachealsuctioningbyexplicit

statementsoftheneedforit Balancingdecisionsup againstoneother Decisiontodelaysuctioningbecauseofpreviousactions

andtheprofessional’sassessment

1 Thenamesofallthepatientsandprovidersmentionedherehavebeenmodiﬁed toensureconﬁdentiality

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interpretedasadesiretobecomeaparticipantratherthanan observer.Each patient’slevel of involvement indecisions as well as their overall level of involvement varied across decisions.

3.2.2.Negotiatingdecisionsaboutindividualizedcare

Patients and providers sometimes negotiated aspects of a micro-decision,suchasthetimingofprocedures,whowouldbe present,thelevelofassistance,theorderofstepstocompletethe procedure,orwhethertheprocedurewasnecessary.Thiswasmost typicallyseen in invited, shared, and self-determineddecisions (appendix1).Eitherthepatientorthehealthcareprovidercould initiatea negotiatingdialogue.However,thepatientstendedto indicate opposition either by forming words, making gestures showingreluctance,orshakingtheirheads(“no”)iftheydisagreed.

Patientsalsousedsubtlenon-vocalsignssuchasfacialexpressions (grimacing)orshouldershrugstoexpressthemselves.Anexample ofhownegotiationsunfoldinthiscontextisprovidedinTable4, wherepatientRaphaelnegotiatedthedurationofanasalcannula

procedure. We categorized the situation as a self-determined decision, as Raphael initiated the dialogue and negotiated the timingbasedonhispreferences.

Thenegotiationsledtomultiplepathwaystomanagetreatment decisions, exemplified in the various approaches tothe use of tracheostomy speaking valves. One of the patients used the tracheostomyspeakingvalveextensively;however,thephysician wanted to ensure that the patient’s lungs were sufficiently humidified. After negotiating several alternatives, they agreed upon using another treatment option (Optiflow^TM) when the patientwasresting,toprovidehumidity.Thisdecisionintegrated both the patient’s desire to communicate and the physician’s professionaljudgment.Anotherpatientexpressedfeelinganxious usingthetracheostomyspeakingvalve,therefore,sheonlyusedit forbriefperiods.Thesetailoredandshareddecisionsshowedthat treatment decisions were adjustedto each patient’sneeds and preferences.

Raphael made self-determined decisions, as well as being invitedintothedecision-makingbytheproviders.Fig.1illustrates Table3

BEINGANOBSERVERVERSUSAPARTICIPANTINTREATMENTANDCARE.

PatientDinaexpressesthatitfeelsheavytobreathewhenthephysiciansassesshercondition.PhysicianVictorasksnurseCristianwhethertherehavebeenanychanges ontheventilator,andherespondslookingattheventilator,“ThepressuresupportandthePEEPhavebeenthesame.Iraisedtheoxygensinceshehadsomefeelingof dyspnea.”

PhysicianVictorgoesovertotheventilatorbeforehelooksdownatDinaandsays,“Iwilltrytomakeiteasierforyoutobreathe.”Aftermakingtheadjustments,heasks her“Doesitfeelbetter?”

Dinaforms“alittle”withherlipsandnods,stillbreathingheavily.

“Ithinkthesettingcanbelikethis;itseemsmoreimportantthatsheiscomfortablethantoreducethesupportoftheventilator.Let’swaituntilthelungsrecover,”Victor sayslookingatnurseCristian.ThenheturnsaroundandrepeatsthesamethingtoDina.Shelooksathimandnodsslightly,Victordoesnotaskheranymorequestions andleavestheroom.

Table2

Thedeﬁnitionsilluminatethedifferencesandsimilaritiesbetweenthedifferenttypesofmicro-decisionsobserved.Thelastcolumnexplainsthedecisionsbeingmadewithin eachtypeofmicro-decisionmorein-depth.

Typesofdecision-making Criteria Identiﬁedmicro-decisionswithineachtypeofdecision-making

Non-inviteddecisions Thehealthcareproviderinitiatesandmakesthedecision.Patients mayreceiveinformationoraskaboutaspeciﬁcdecision,butthe providerdoesnotsolicitpatientpreferencesorincludethepatient inthe(ﬁnal)decision.

Theuseofatracheostomyspeakingvalve

Treatmentoptions(variousprocedures,increase/decreasemedication, changesinventilator-settings,woundcare)

Thetimingandtypeofactivityduringphysiotherapyandmobilization PlanstodischargefromtheICUHygienicprocedures(suchas disinfectionofcentralvenouslines)

Theneedfortrachealsuctioning Substituteddecisions Thehealthcareproviderinitiatesandmakesthedecision,indicating

knowledgeaboutthepatient’spreferencesandinvolvingthe patientintheprocessviaassumedconsent.

Waysofperformingprocedures

Treatmentoptions(i.e.increase/decreaseofmedication) Theuseofatracheostomyspeakingvalve

Guideddecisions Thehealthcareproviderinitiatesandproposesthedecisiontothe patient,asadecisionthatthepatientwouldbeneﬁtfrom.

Preferencesarenotactivelysolicitedunlessthepatientactively expressessomethingrelatedtothedecision.Theproviderassumes thepatient’sconsent.

Treatmentoptions(i.e.increase/decreasemedication) Theneedforsleep/rest

Inviteddecisions Thehealthcareproviderinitiatesthedecision.Theprovidersolicits thepatient’spreferencesbyindirectlyaskingforpermissionor directlyprovidingoptionsaboutthedecision.

Physicianstreatmentplan Theneedfortrachealsuctioning

Theamountandtimingofweaningattempts

Thetimingandtypeofactivityduringphysiotherapyandmobilization Shareddecisions Eitherthepatientorthehealthcareprovidermayinitiatethe

decision.Boththepatient’spreferencesandtheprovider’s assessmentareconsidered,andthepatienttakesanactiverolein thedialogue.Bothagreeontheﬁnaldecision.

Longtermplansfortreatment

Theamountandtimingofweaningattemptsandchangesinventilator- settings

Theneedfortrachealsuctioning

Thetimingandtypeofactivityduringphysiotherapyandmobilization Self-determined

decisions

Thepatientinitiatesthedecisioneitherbycommunicatingnon- vocallyusingcommunicationaidsorbyphysicallyexpressing preferences/needs.Thedecisioniscarriedoutwiththeassistanceof thehealthcareprovider.

Theneedfortrachealsuctioning

Theamountandtimingofweaningattempts

Thetimingandtypeofactivityduringphysiotherapyandmobilization

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howhislevelofinvolvementinthemicro-decisions variedover timewithinthetypesofdecision-makingidentiﬁed.Wealsosaw thispatterninotherpatients.

3.2.3.Balancingempoweringactivityandenergyrestoration Theamountandappropriatetimingofactivitieswerefrequent topicsin thevideos.Balancingprocedureswithpatients’prefer- encesand need forrest was noteasy.Often,plans ofcare and providers’workﬂowconﬂictedwithpatients’wishes.Forexample, somepatientsexpressedreluctancetowardsprocedurestowean frommechanicalventilationandtodophysiotherapyduetothe amountofenergyitrequired.Weinterpretedthesedialoguesas theproviderstryingcarefullynottooverlypressurethepatient, constantly assessing the patients’ tolerance for the potentially painfulorenergy-consumingprocedures.Sometimestheypushed patients a step forward in the process of weaning from the ventilator or tried toincrease the amount of physical activity, whereas other times they held back, preserving the patients’ energy.Thiscontradictionappearedmosttypicallyinnon-invited andguideddecisions,illustratedinthedialoguebetweenpatient

Davidandhisproviders(Table5).Weinterpretedthesituationasa guideddecision,sincetheprovidersencouragedDavidtorestafter theactivitytobeneﬁthisrecovery.

The balancing act required the providers to invest time in dialogue and interpret thepatients’signs of energy/exhaustion while considering what other activities and procedures would need to be prioritized. Sometimes, limiting the activities was beneﬁcial;whereasothertimestheyexpectedincreasedeffortand progress.Thelevelofactivityseemedtobeguidedbyprofessional judgment,asdecisionsaboutbalancingactivityandrestwereoften madewithoutinvitingthepatienttoparticipateinthedecision- making.

4.Discussionandconclusion 4.1.Discussion

The present study provides a novel understanding of ICU patients’involvementintheirtreatmentandcare.Wefoundthe interactionbetweenpatientsandthehealthcareproviders tobe Table4

NEGOTIATINGDECISIONSABOUTINDIVIDUALIZEDCARE.

NurseBenjaminsays,“Iwillnowdisconnectthetube,andyougetthisplasticdeviceinsteadandsomeextraoxygensupply,andyougetthesameamountofoxygenas whatyou

getontheventilator.”

Benjaminisholdingupthenasalcannula,pointingtowardshisneckinfrontofRaphael,whoisgrimacing.

NurseBenjaminsays,“Itisgoingtofeeldifferenttobreathecomparedtotheventilator,butyouaresupposedtobreathenormally...onlythroughthetubeinyourneck.If itisuncomfortable,Iwillputyoubackontheventilatorimmediately.I’llbehereallthetimeandwon’trunaway.”

Raphaelmakesﬁrstonesignalwithhisrightpalmoutintheair,andthenanothersignalwithbothhandscrossingthemasastopsignalasnurseBenjaminisaboutto connecthimtothenasalcannula.

“Atimeout?Notimeoutnow,let’sjustdothis,”Benjaminrespondsandﬁnishestheprocedureanddisconnectstheventilator.

Raphaelmakessignalstowrite,andhewritesonthecommunicationboardthatheisscared.

Benjaminresponds,“Yeah,yougetscared...butyouwerealsoscaredyesterday,andthenIdidnothookyouuptothedevicetogetyouusedtotheidea.”

ThedialogueisinterruptedbyRaphael’scoughing,Benjaminremovessomemucusfromthetracheostomy.Afterward,RaphaelwritesoncemoreandshowsittoBenjamin whoreadsitoutloudstandingnexttohim,“whenitstops ... Igetmoreafraidbecauseitgetssoquiet.”

Benjaminremainsatthebedsideandnothingissaidforawhile.ThenRaphaelwritesagainandshowsittoBenjaminwhoresponds,“Youwanttogetbackonthe ventilator?Youhavebeensixminutesonthenasalcannulanow.Doyouwanttogetconnectedbacktotheventilator?”

Raphaellooksathimandnodsslightly.Benjaminreconnectshimtotheventilator.

Fig.1.Thefiguredemonstrateseachmicro-decisionsmadeintherecordingofpatientRaphael.Thepuncutatedecisionpointsareillustratedinthetypesofmicro-decisionit wasgroupedwithin.Furtherelaborationandexemplificationofthedecisionsthatoccurred:1.Noanalgesics:Patientisaskedifheisinpainandneedsmoreanalgesics, respondsnowithlipsshakinghead.2.Nasalcannula:Patientisbeingputonnasalcannula,saysnobothbyshakingheadandholdingoutahand.Nursesays“Iletyouoff yesterday,todaywe`lljustdoit.Iwillbewithyouthewholetime.”3.Trachealsuctioning:Patientscoughs,nurseasksIfitisokayifheremovesmucusandpatientnods.4.End nasalcannula:Patientwritestostopattemptandshowsittothenurse.Heputshimbackontheventilator.5.Mobilization:Patientwritesthathewouldliketositonbedsideif physicianallows.Nurseconfirmsdecision.6.Standingupduringmobilization:Patienttriestostanduponhisowninitiative,getstoldbynurseandphysiotherapisthecannot dothatsoquicklyandshouldjustsitdownonthebedside.7.Endmobilization:Patienttriestolaybackinbedonhisowninitiativesignalizingbymovinginthebed,assisted bythenursesandphysiotherapist.8.Ventilatorsettings:Patientsexpressdysponeaandnurseadjustsventilator.Asksafterwardsaboutpatientcomfort.

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morevariedacrossandwithinpatientsthanpreviouslyreported both in terms of the types and processes of micro-decisions [18,19,27]. We identified six types of decision patterns: non- invited,substituted,guided,invited,sharedandself-determined decisions.Theanalysisrevealedvariationsinhowmicro-decisions evolved and were influenced by providers, patients, and other factors suchas the disease characteristics. We identified three mainfeaturesinthedecision-makingprocesses:howthepatients continuously shifted between being in observer or participant positions when interacting, how the patient and the provider negotiatedmicro-decisions,andhowdecision-makingwaslimited bytheneedforenergyrestoration.Thesefeatureshavenotbeen addressedinpreviousstudies,whichhavetendedtohighlightthat patientsoftenfeelvulnerable,struggletocommunicate,andare isolatedfromthetreatment[18,27].

Thisstudycontributestoamoresituation-speciﬁcunderstand- ingofdecision-making, inICUs.Evenwhen patientsmadeself- determineddecisions,theirphysicallimitationsmeantaprovider needed to carry them out (e.g., tracheal suctioning). We interpretedpatient-initiatedcommunicationabouttreatmentor care as self-determined decisions (perhaps an over-statement consideringthepatient’scommunicationbarriers).However,we didobservetreatment decisions basedon thepatients’ explicit bodilysignals,suchaspointingtothetracheostomy.

Ourfindingsillustratehowautonomyisnotafixedstate,and that patient involvement must be understood in the cultural, social,physicalandembodiedpracticewhereitoccurs[38].Kukla arguesthatautonomyisnotnecessarilymeasurablebypunctuated decisionpointsbutshouldincludeseveralhealthdecisionsmade overtimeandconsideringthedegreetowhichthepatientscan makeaconscientiousdecision[25].Thompson[39] interviewed bothpatientsandmembersofvoluntaryhealthcareorganizations abouttheirinvolvementintreatmentdecisions,findingthatmany preferproviderstomakedecisionsduringcriticalillness.Micro- decisions do not pose the same dilemmas or significance as decisionsaboutlife-sustainingtreatment;therefore,theseverity ofthedecisionmayaffectthepatients’desiretoparticipateinthe decision-making.OurstudyindicatesthatICUpatients’autonomy depends upon the context, the severity of the illness, the communicationbarriers,informationneeds,andthetimeavailable tocommunicate.However,eventhoughthepatientswerecritically illtheyalsoexressedadesiretoparticipate.Patientparticipationin treatmentdecisionsdoesnotnecessarilyimplythattheyshouldbe makingonlyself-determineddecisions;however,werecommend that providers invite patients into decision making whenever possibleandtoexplorethepatients’preferences.

Thestudyisoneoftheﬁrsttoinvestigatehowmicro-decisions are made at the patients’ bedsides in ICUs. In a focused ethnographyofweaningfromprolongedmechanicalventilation, Happ et al. [18] found that 12 out of 30 (40%) patients they observed were involved in making decisions about their care.

These decisions included bedside decisions such as weaning procedures andinitiation/withdrawal ofmechanical ventilation, surgery,feedingtubes,tracheostomyinsertions,orwithdrawalof dialysis,whichissimilartoourstudy.Happreportedthatonly19%

of thedecision-making processeswerepatient-initiated, and in 55%oftheprocesses,patientswerenotinvited.Thisconcurswith ourﬁndings,as manyof theobservedmicro-decisionprocesses werenon-inviteddecisions,andthepatients’opinionswerenot solicited. We do not know whether thepatientsagreed tothe decisionsbeingmadeornotiftheydidnotexpresstheiropinions intheobservations.

Negotiations in micro-decisions, such as mobilization, have been reported in other studies [19,40]. Negotiating ways of performingpainfulandexhaustingproceduresmaybeinterpreted aspatients’waysofgainingcontroloftheirsomewhatchaoticand uncertain existence[41–43]. These negotiations maychallenge providers’professionaljudgement,whichmustbeincorporatedin decision-makinginICUs,butwithconsiderationofthepatients’ experiences,resources,andcognitivecapacity,aswellasthebest availableevidenceforthedifferentchoices[24,26,44].Mechani- cally ventilated patients are completely dependent on the providers’assistanceandattention[37],andtheylacknegotiation power.Encouragementfromproviders,tobecomegraduallymore involved,canleadtopatientempowerment[26,27].Invitationto participateindecisions,byproviders,isdescribedbypatientsina previousstudyasapositiveact[19]andisempoweringovertime [19,42,24].Patientinvolvementinmicro-decisionsisthereforean importantpartoftherecoveryprocess[19,42,45].However,this requiresthatenoughtimebespentsolicitingpatientpreferences to ensure correct understanding, due to the communication barriers[44,46].

The negotiations we observed revealed how patients who underwentbedsideproceduresnumeroustimes(suchastracheal suctioning)gained personalexperiences thatthey subsequently applied in thedecision-making. For example, patientRebecca’s (Table1)previousbadexperiencewiththetracheostomyspeaking valveandRaphael’s(Table4)reluctancetowardsthenasalcannula.

Providerscanensuretheyconsiderpatients’wishesinthemicro- decisions over time by both documenting and sharing their preferenceswithother healthcareteam members.Shareddeci- sion-making processes often involve soliciting preferences and reachinganagreementfromboththepatient’sandtheprovider’s perspectives[33].Inthe“negotiatingspace”thereispotentialto involvethepatientsandtoensureindividualizedcare.Thecurrent studyshowsthatmicro-decisionscanimpactimportanttreatment decisions, such as weaning off ventilation, eventually affecting patientoutcomes.

Forpatientsonmechanicalventilation,itisdifﬁculttoexplore optionsindepth.Explorationofoptionsisanimportantstepin shareddecision-making[33].Facilitativestrategiescouldbetouse communicationaids,ortoinvolverelativesinthedecision-making Table5

BALANCINGEMPOWERINGACTIVITYANDENERGYRESTORATION.

Davidhasbeen21daysintheICU,strugglingwithprolongedweaningfrommechanicalventilation,ICU-acquiredweakness,andpostoperativecomplications.Duringthe physiotherapy,Davidhasworkedhard,andphysiotherapistBridgetcommentsassheisabouttoclosethesession“Welldone,nowIthinkyouaretired.”

Davidrespondsforming“no”withhislips,lookingathershakinghishead.

“Younevergettired?”Bridgetrespondslaughing,andDavissmilesathershrugginghisshoulders.Bridgetthencontinues“Aphysiotherapistwillbebacktogetyouupon thebedsidelater,butyou`llgetsomerestﬁrst.”

NurseOscarcomesuptothebedsideandsays“Ithoughtyouwouldlayonthesideandrestabit.Doyouthinkyouwillbeabletorelaxsome?Youhaveworkedoutnow.It isgoodtosleepinthemorningandnotintheevening,tonotinterruptthenightsleep.”

DavidlookstowardsOscarandformswordswithhislipsandgrimaces.

“No?Youthinkitwillbepainful?”OscarrespondsandDavidnods.“whydon’twetry,ifitisuncomfortableforyou,wewillchangepositionagain?”OscarasksandDavid againnodsa,abitslowerthistimeandhelooksaround.

BridgetandOscarpositionDavidonhisrightsideandmakesureheiscomfortable.BeforeBridgetleavestheroom,shesays“goodbye,restnowit`sbeenatoughsession.

Greatjob!”toDavid.Davidformswordswithhislipslookingatherwhilehenods.