The Challenge of Consolation: A qualitative study of ... · Kirsten Tornøe The Challenge of...

KirstenTornøe

TheChallengeofConsolation:

Aqualitativestudyofnurses’experienceswithpracticingand

teachingspiritualandexistentialcareforthedying

PhDThesis

MFNorwegianSchoolofTheology

Oslo2017

“Itisinthefearfulmomentsofdesolationwherethereisnomeaningleftthatabravestatementofconsolationpenetratesthedarknessandcreatesnewmeaning.Thishappensontheborderwherenothingispossibleanymore.”(Kierkegaard,citedinNorberg,BergstenandLundman,2001p.545)

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Contents1.Acknowledgments....................................................................................................................III2.Abstract.........................................................................................................................................V3.Listoforiginalpapers............................................................................................................VII4.Introduction..................................................................................................................................14.1Background..........................................................................................................................................14.1.1Conceptualclarifications............................................................................................................................4

4.2Spiritualandexistentialcare:Thestudy’stheoreticalposition........................................54.3Whyresearchlivedexperience?.................................................................................................10

5.Theaimofthestudy................................................................................................................115.1Thespecificaims..............................................................................................................................115.2Theresearchquestions.................................................................................................................11

6.MethodologicalFrameworkPhenomenologicalHermeneutics..............................126.1EdmundHusserl...............................................................................................................................136.2MartinHeidegger.............................................................................................................................156.3Hans-GeorgGadamer.....................................................................................................................176.4PaulRicoeur......................................................................................................................................206.4.1Textunderstoodashumanaction.......................................................................................................216.4.2Distanciationandappropriation..........................................................................................................216.4.3Explanationandunderstanding...........................................................................................................226.4.4Guessingandvalidation...........................................................................................................................22

7.Themethods..............................................................................................................................247.1Datacollection:Narrativeinterviews.......................................................................................247.1.1Thenarrativefocusgroupinterview..................................................................................................26

7.2Dataanalysis:Interpretingtheinterviewtexts.....................................................................267.2.1Thenaïvereading.......................................................................................................................................277.2.2Thestructuralanalysis.............................................................................................................................277.2.3Comprehensiveunderstanding(Interpretedwhole)..................................................................28

7.3Methodologicalconsiderations...................................................................................................297.3.1Thetrustworthinessofthedatacollection......................................................................................307.3.2Thetrustworthinessofthedataanalysis.........................................................................................327.3.3Rationaleforconductingaphenomenologicalhermeneuticaldataanalysis...................347.3.4Mypreunderstanding................................................................................................................................367.3.5Studylimitations.........................................................................................................................................37

8.Thestudy....................................................................................................................................398.1Thesetting..........................................................................................................................................408.2Recruitmentstrategy......................................................................................................................418.3Thesample.........................................................................................................................................418.4Conductingtheinterviews............................................................................................................428.5Ethicalconsiderations....................................................................................................................43

9.MainresultsinPapersI-III...................................................................................................459.1PaperI.................................................................................................................................................459.2PaperII................................................................................................................................................469.3PaperIII..............................................................................................................................................47

10.Discussion................................................................................................................................4810.1Conveyingconsolation.................................................................................................................48

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10.1.1Thehermeneuticsofconsolation......................................................................................................5010.1.2Therelationaldimensioninthenurses’consolationnarratives.........................................5210.1.3ConveyingconsolationinrelationtoSpiritual/ExistentialandPsychosocialcare....5510.1.4ConsolationthroughExistentialmeaningmaking.....................................................................5710.1.5ThePowerofConsolingpresence.....................................................................................................6010.1.6Consolationunderstoodasamoralresponsibility....................................................................61

10.2Vulnerabilityandhelplessness................................................................................................6810.2.1Vulnerabilityandembodiedengagement.....................................................................................7010.2.2Compassionfatigue.................................................................................................................................7210.2.3Compassionsatisfaction........................................................................................................................75

10.3CompassionandCourage...........................................................................................................7610.3.1Compassion.................................................................................................................................................7610.3.2Courage.........................................................................................................................................................78

10.4Cancourageandcompassionbetaught?..............................................................................8010.4.1Cancompassionbetaught?..................................................................................................................8110.4.2Cancouragebetaught?..........................................................................................................................84

10.5Pedagogicalimplications............................................................................................................8810.5.1Recommendations...................................................................................................................................91

11.Concludingremarks.............................................................................................................94References......................................................................................................................................95PaperI-III......................................................................................................................................107Appendix.......................................................................................................................................108

III

1.AcknowledgmentsLøgstrup(1997)notesthatwhileeverypersonisanindependentandresponsible

individual,healsopointsoutthatweareinescapablydependentuponeachother,and

thatwebelongtoaworldinwhichweholdsomethingofoneanother’slifeinourhands.

Accordingly,althoughaPhDthesisisanindependentpieceofresearch,itwouldnot

havebeenpossiblewithoutthecontributions,supportandencouragementfrommany

others,forwhichIamextremelygrateful.

Firstly,Iwishtoexpressmygratitudetothenurseswhoparticipatedinthestudy.

Thankyoufortrustingmeandforsharingyourspiritualandexistentialcarestories

whichreverberatewithcourage,compassionandconsolation.

Secondly,IwishtothankmysupervisorsProfessorLarsJohanDanbolt,Professor

VenkeSørlieandProfessorKariKvigne.

IamespeciallygratefultoVenkeSørlieandLarsJohanDanboltwhohelpedmepursue

mydreamofwritingthisPhDthesis.LarsJohanDanbolthasbeenmymainsupervisor.

ThankyouforsharingyourinvaluableinsightsinthefieldofPsychologyofReligionand

forhelpingmetoobtainfundingfromTheInnlandethospitaltrust.Youreffervescent

spiritandoptimisticfaithinmyprojecthasbeencontagious,upliftingandinspiring,

throughouttheentireresearchprocess.

Manythankstomyco-supervisorandcolleagueatLovisenbergDiaconalUniversity

CollegeVenkeSørlie.Venkehasaccompaniedandsupportedmeallthewayfrommy

firsttentativeresearchproposalstillthecompletionofthisthesis.Thankyouforyour

invaluableadviceandguidanceonstudydesign,phenomenologicalhermeneuticaldata

analysis,relationalethicsandforshowingme“theropes”onarticlepublishing.

Manythankstomyco-supervisorKariKvigne,whojoinedthesupervisionteamwhen

weanalyzedthedatafromthefirststudy.Thankyouforyourcontributionstointerpret

theresultsandforcriticalreviewofthemanuscripts.Thankyouforinitiatingthecourse

inphenomenologicalhermeneuticalanalysisatHedmarkUniversityCollege,andfor

givingmetheopportunitytoparticipate.Thankyoualsoforyourwarmhospitality.

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SpecialthankstoProfessorValerieDeMariniswhocriticallyexaminedandevaluatedmy

thesisatthefinalPhDseminarinOctober2015.

Ihavebeenfortunatetoparticipateinmonthlymeetingswiththepsychologyofreligion

PhDgroupatMFSchoolofTheology,ledbyProfessorLarsJohanDanbolt.Thisgroup

hasbeenanimportantandinspiringmeetingplace.Thankyoutomyresearchfellows

Torgeir,Liv,SigridHelene,Tor,Hege,Anneandtherestofthegroup.

Iamgratefultomyemployer,LovisenbergDiaconalUniversityCollegeandtothe

InnlandetHospitalTrustforfinancialsupport,whichgavemetheopportunitytopursue

myresearchinafulltimepositionforthreeyears.

AwarmthankyoutomycolleaguesatLovisenbergDiaconalUniversityCollegewho

haveencouragedandcheeredmeonthroughthewritingprocess,andtoourexcellent

libraryandcomputerstaff.

Spendinggruelinglonghourswriting,makesonesusceptibletotheperilsofrepetitive

stressinjuries.IamthereforegratefultomyAlexanderteacherNigelHornbyandthe

Alexandertechnique(Cranz,2000;Hollinghurstetal.,2008)whichhasenabledmeto

improvemyposturalalignmentandtoreleasemusculartensionwhilstworkingatthe

computer.

Lastbutnotleast,Iamthankfulforthesupport,loveandencouragementfrommy

familyandfriends,especiallyRigmor,BørreandAnneBerit,whohadfaithinmyPhD

questthroughoutthemanyyearsof“knockingondoors”,huntingforresearchgrants

andwritingresearchproposalsuntilmywindowofopportunityfinallyflungopen!

(ThankyouLarsandVenke!)

IamespeciallygratefultomymotherJudithTornøe,forproofreadingallthreearticles

andtheentirethesis.

Oslo,December2016

V

2.Abstract

Background:Inwesterncountriesanincreasingproportionofolderpatientswith

incurablecancerorotherchronicconditionswillrequirepalliativecare.Respondingto

thefiscalpressureintheNorwegianhealthcaresystemtheNorwegiangovernment

implementedamajorhealthcarereformin2012.This“CoordinationReform”downsized

specializedhealthcareunitsinthesecondaryhealthcaresectorandtransferredmore

palliativecareresponsibilitiestonursinghomesandhomecarenursingintheprimary

healthcaresector,whichoftenlackadequatenursingexpertise.Asaconsequence,less

qualifiedcareworkersaswellasregisterednursesincreasinglyhavetoprovide

palliativecare,whichincludestheimpeccableassessmentandtreatmentofphysical,

psychosocial,spiritualandexistentialpain.However,researchshowsthatspiritualand

existentialcareforthedyingisfrequentlyoverlookedinmostcaresettingsandthat

nursesandothercareworkersoftenfeelanxiousanduncertainaboutproviding

spiritualandexistentialcarefordyingpatients.Thisindicatesthatthereisawidespread

needforspiritualandexistentialcarecompetencyinpalliativecare.Thereisagapinthe

literatureabouthownursesmayalleviatedyingpatients’spiritualandexistential

sufferingintheireverydaypractice.Thereisalsoagapintheliteratureabouthowto

trainnursingstafftoprovidespiritualandexistentialcareforthedying.

Aim:TheoverallaimofthisPhDthesisistoilluminatethemeaningofregisterednurses’

experienceswithpracticingandteachingspiritualandexistentialcareforthedyingin

differentNorwegianhealthcarecontexts.TheaimsinstudiesI,IIandIIIwere:

I: Todescribethemeaningofhospicenurses’livedexperiencewithalleviatingdyingpatients’spiritualandexistentialsuffering

II: Todescriberegisterednurses’experienceswithspiritualandexistentialcarefordyingpatientsinageneralhospital

III: ToilluminateapioneeringNorwegianmobilehospicenurseteachingteam’sexperiencewithteachingandtrainingcareworkersinspiritualandexistentialcareforthedyinginnursinghomesandhomecaresettings

Methodsanddesign:Thisisaqualitativestudy.StudyIwasbasedoneightindividual

narrativeinterviewswithhospicenurses.StudyIIwasbasedonsixindividualnarrative

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interviewswithregisterednursesinamedical-oncologicalwardinageneralhospital.

StudyIIIwasbasedonanarrativefocusgroupinterviewwiththethreehospicenurses

inthemobileteachingteam.Aphenomenologicalhermeneuticalmethodwasusedto

analyzetheinterviewtexts.

Mainresults:Spiritualandexistentialcarewasaboutconsolingthedyingby

unburdeningthemandfacilitatingapeacefuldeath.Thenursesconveyedconsolationby

helpingtheirpatientstosettlepracticalissues,reconcilethemselveswiththeirloved

onesandtofindpeacewithGod,andbysimplybeingpresentwiththeirpatientsto

sharethesuffering.Conveyingconsolationprovedtobeadeeplyrelationalpractice,

whichdemandedcourageandcompassionbecauseitexposedthenursestotheirown

vulnerability,mortalityandhelplessness.Practicaltrainingprogramsproviding

experientiallearningopportunitiesthroughsituatedbedsideteachingmaybeefficient

todevelopcareworkers’courageandcompetencytoprovidespiritualandexistential

careforthedying.However,theresultssuggestthatsuchprogramsshouldalso

introducenursingstafftoreligiousperspectivesonsufferingandreligiousreasoning,

becausetheresultsshowthatthenursesexpresseduncertaintyaboutaddressing

patients’religiousneedsduetoalackofformalknowledge.

Conclusions:Whennothingelsecanbedone,bearingwitnessandsharingthepatients’

sufferingmaybeconsolingactsinthemselves.Nursesandcareworkersinend-of-life

careconfrontintractablesuffering.Hence,theycannotalwaysexpecttobesuccessfulin

theireffortstoalleviateit.Therefore,thestudyresults,whichindicatethatconsolation

maybeconveyedandsustainedthroughpresenceandrelatedness,areextremely

important.Alessqualifiedworkforceincreasinglydominatesnursinghomesand

homecarenursingatatimeofincreasingprevalenceofcomplexhealthconcerns.Mobile

expertnurseteachingteamsinspiritualandexistentialcare,(andothernursingfields)

maybeaneffectivemeanstoredressthewideninggapbetweenworkforcequalityand

thedemandforhighqualitycareintheprimaryhealthsector.

Keywords:consolation,spiritualandexistentialcare,palliativecare,healthcarereform,

phenomenologicalhermeneuticalmethod,narrativeinterviews,primaryandsecondary

healthcaresector

VII

3.ListoforiginalpapersThethesisisbasedonthefollowingpapers,whichwillbereferredtointhetextbytheir

romannumerals:

I.Tornøe,K.A.,Danbolt,L.J.,Kvigne,K.,&Sørlie,V.(2014).Thepowerofconsoling

presence-hospicenurses'livedexperiencewithspiritualandexistentialcareforthedying.BMCNursing,13(1),25.

II.Tornøe,K.A.,Danbolt,L.J.,Kvigne,K.,&Sørlie,V.(2015).Thechallengeof

consolation:nurses’experienceswithspiritualandexistentialcareforthedying-aphenomenologicalhermeneuticalstudy.BMCNursing,14(1),62.

III.Tornøe,K.,Danbolt,L.J.,Kvigne,K.,&Sørlie,V.(2015).Amobilehospicenurse

teachingteam’sexperience:trainingcareworkersinspiritualandexistentialcareforthedying-aqualitativestudy.BMCPalliativeCare,14(1),43.

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4.IntroductionTheoverallaimofthisPhDthesisistoilluminatethemeaningofregistered

nurses’experienceswithpracticingandteachingspiritualandexistentialcarefor

thedyingindifferentNorwegianhealthcarecontexts.

4.1BackgroundInwesterncountriesanincreasingproportionofpatientsareolderpeoplelivingwith

incurablecancerorotherchronicconditionsthatwillrequirepalliativecareforshorter

orlongerperiodsoftime(Haug,Danbolt,Kvigne,&Demarinis,2014,p.68;Norwegian

DirectorateofHealth,2015;Seale,1999).TheevidenceondeathanddyinginWestern

EuropeandtheUSAsuggeststhatamajorityofpeopledieinhospitals(Costello,2006).

Inlinewiththistrend,Norwegianpalliativecarehasundergonequitedramaticchanges

duringthelastthirty-fiveyears.Movingfromitsidealisticandsocialhospiceorigins,

Norwegianpalliativecarehasbeenintegratedinthepublichealthcaresystemwhichis

wellorganizedwithintwomainsectors:theprimaryhealthandlong-termcaresector

(nursinghomesandhomecarenursing),andthesecondaryhealthcaresector,involving

hospitalandspecialistservices(Romoren,Torjesen,&Landmark,2011).Specialist

palliativecareservices,includinghospices,areorganizedwithinthelevelofsecondary

healthcareinsomatichospitals(Bollig,Rosland,&Husby,2013;Haugetal.,2014;

NorwegianDirectorateofHealth,2015;Strømskag,2012).

However,theNorwegianhealthcaresystemisstrainingunderfiscalpressure,following

theinternationaltrendofcuttinghealthcarecostsanddownsizingspecializedhospital

unitsinsecondaryhealthcare(EuclidNetwork,2012;NorwegianMinistryofHealthand

CareServices,2012;WorldHealthOrganization,2002).Respondingtotheeconomic

challengesinthehealthcaresystem,theNorwegiangovernmentimplementedamajor

healthcarereformin2012:“TheCoordinationreform”(NorwegianMinistryofHealth

andCareServices,2012).Theaimwastoalleviatepressureonthesecondaryhealth

caresectorbyupgradingtheprimaryhealthcaresectorandbytransferringmore

palliativecareresponsibilitiestonursinghomesandhomecarenursing(Bolligetal.,

2013;NorwegianMinistryofHealthandCareServices,2012).Henceforth,nursing

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homesandhomecaresettingsarebecomingthehospicesofthefuture(Abbey,Froggatt,

Parker,&Abbey,2006).Asaconsequence,lessqualifiedcareworkers(suchas

unregulatednursingassistants)aswellasregisterednurseswillincreasinglyhaveto

providepalliativecareinnursinghomesandhomecarenursing(Annear,Lea,&

Robinson,2014;Colombo,Llena-Nozal,Mercier,&Tjadens,2011;Leclercetal.,2014).

InNorwaynearly50%ofthedyingareresidentsinnursinghomes,withunderpowered

budgetsandoftenlackingadequateexpertise(Bolligetal.,2013).

TheWorldHealthOrganization(WorldHealthOrganization,2002)maintainsthat

palliativecareincludestheimpeccableassessmentandtreatmentofphysical,

psychosocialandspiritualpain.Agrowingbodyofinternationalpalliativecareresearch

indicatesthatspiritualandexistentialcareisanintegralcomponentofholistic,

compassionatecareforthedying(Bachner,O'Rourke,&Carmel,2011;Nolan,2011;

Steinhauseretal.,2000).Oneofthekeygoalsofpalliativecareistoalleviatedying

patients’suffering(Delgado-Guayetal.,2011).EricCassel(1991a)statesthatalthough

sufferingoftenisrelatedtoacutepainorotherbodilysymptoms,itextendsbeyondthe

physical.“Mostgenerally,sufferingcanbedefinedasthestateofseveredistress

associatedwitheventsthatthreatentheintactnessofperson”(Cassell,1991a,p.33).

Dyingpatientsliterallyexperienceathreattotheir“intactnessofperson”,andassuch

arepronetoexperiencesuffering.Existentialandspiritualsufferingareamongthemost

debilitatingconditionsindyingpatients.Henceforth,thereisagreatneedforpalliative

spiritualandexistentialcarecompetencyintheprimaryaswellasthesecondarylevels

oftheNorwegianhealthcaresector(Boston,Bruce,&Schreiber,2011).

Yet,researchrevealsthatspiritualandexistentialcareisfrequentlyoverlookedin

palliativecare.Thereisagrowingawarenessthatmostcaresettingsfailtoprovide

optimalspiritualcaretothosewithseriousillnessandthoseattheendoflife(Puchalski

etal.,2009).Patientswithadvancedillnessesreportthattheirmedicalcaregivers

infrequentlyprovidespiritualcare(Balbonietal.,2013;Sæteren,Lindström,&Nåden,

2011).AccordingtoUdo(2014)severalstudiesrevealthatmanypatientsare

dissatisfiedwiththeemotionalandexistentialsupporttheyaregiven,eveniftheyare

satisfiedwiththeirmedicalandphysicalcare.ThisissupportedbyGroenvold,Pedersen,

Jensen,Faber,andJohnsen(2006)whofoundthatasignificantnumberofdyingpatients

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longforadequatespiritualorexistentialcareandcounseling.Inspiteofthis,seriouslyill

patientsoftenrefrainfromdiscussingtheirspiritualandexistentialthoughtswith

nursesbecausetheydonotfeelthatnursesacknowledgethisneed(Udo,2014).

Researchshowsthatregisterednursesandcareworkersoftenfeelinadequately

preparedtoprovidespiritualandexistentialcareforthedying,andthatthismakes

themanxiousanduncertain(Christensen,2008;McSherry&Jamieson,2013;Noble&

Jones,2010;Pesut,Fowler,Taylor,Reimer-Kirkham,&Sawatzky,2008;Udo,2014).

Severalstudiesindicatethatalackofskillsinpsychosocialandspiritualcaremayresult

inhighlevelsofmoraldistress,griefandburnout(Back,Bauer-Wu,Rushton,&Halifax,

2009;Bosma,Apland,&Kazanjian,2010;Noble&Jones,2010;Rushtonetal.,2009;

Vivat,2008).Studiesalsoindicatethatthereisawidespreadneedfortraininginall

aspectsofspiritualandexistentialcareforthedying(Balbonietal.,2013;Holloway,

Adamson,McSherry,&Swinton,2011).Accordingtotheliterature,nurses’andcare

workers’discomfortrelatedtoprovidingspiritualandexistentialcareforthedyingmay

leadtounmetspiritualandexistentialneedspossiblyleadingtoincreasedpatient

suffering(Backetal.,2009;Bosmaetal.,2010;Noble&Jones,2010;Rushtonetal.,

2009;Vivat,2008).

Thereisagapintheresearchliteratureabouthowpatients’existentialwellbeingmay

bebestsupportedbynursesandotherhealthcareprovidersineverydaypractice

(Henoch&Danielson,2009).In2014Pesutetal.conductedascopingreviewto

summarizetheavailableevidenceconcerningpalliativecareeducationfornursesand

othernursingcareproviders(Pesutetal.,2014).Noneofthereferencesintheirreview

explicitlymentionedtrainingcareworkersinspiritualandexistentialcareforthedying.

Thissuggeststhatthereisagapintheliteratureconcerningthisissue.Thisthesis,which

isanempiricalstudyofregisterednurses’experienceswithpracticingandteaching

spiritualandexistentialcareforthedying,willhopefullycontributetobridgethese

importantgaps.

NursingresearchinspiritualcarehasuntilrecentlybeendominatedbyAnglo-American

studies.Althoughthisresearchyieldsvaluableinsights,itcannotbedirectlyappliedto

Scandinaviancontexts,duetothedifferencesinspiritualandreligiousclimatesinthese

societies(Lundmark,2006).OnthegroundsofdifferentsurveysSørensen(2012)notes

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thatreligionisamorepervasiveanddiversephenomenonintheUSA,thaninthe

Scandinaviancountrieswherelargenumbersofthepopulationbelongtothe

protestant/Lutheranmajoritychurches.(Sørensen,2012),InNorwayapproximately73

%ofthepopulationbelongtotheChurchofNorway(StatistiskSentralbyrå(Central

BureauofStatisticsinNorway),2015).However,inspiteofthelargechurch

membership,Scandinaviansocietiesarequitesecularizedandreligiousandspiritual

thoughtsandpracticesarelargelyregardedasprivatematters.However,thisdoesnot

meanthatthemajorityhasturnedawayorishostiletoreligion(DeMarinis,2008;la

Cour,2008;laCour&Hvidt,2010).Althoughtheinterestintraditionalreligionis

declining,Norwayisgraduallybecomingamoremulticulturalandreligiouslydiverse

society(Ulland&DeMarinis,2014),andagrowingnumberofScandinaviansconsider

themselvestobe“spiritualbutnotreligious”.Dismissingdogmatictruths,their

religiosityandreligiousparticipationismainlyrootedinemotionsandhuman

experience,asameanstosearchforandexpress“authenticself-hood”(Botvar&

Schmidt,2010;DeMarinis,2008).Thisformforspiritualityor“worldviewconstruction”

isrelatedto“existentialmeaningmaking”,whichmayormaynotincludeatranscendent

dimension(DeMarinis,2008;Schnell,2009,2010;Schnell&Keenan,2011).

Despitethe“privatizedattitudes”towardsreligionandspiritualityintheScandinavian

countries,recentyearshaveyieldedagrowingnumberofScandinaviannursingstudies

inspiritualandexistentialcare(Ilkjær,2012;Sæterenetal.,2011;Torskenæs&Kalfoss,

2013;Torskenæs,Kalfoss,&Sæteren,2015;Ødbehr,2015)whichdrawontheemerging

bodyofresearchwithinthefieldofpsychologyofreligion,spiritualityandhealth(Haug,

2015;Koenig,King,&Carson,2012;Masters&Hooker,2013;Sørensen,2012;Sørensen,

Lien,Landheim,&Danbolt,2015).ThisPhD.thesisistobeviewedasaNorwegian

contributiontotheemergingfieldofScandinaviannursingresearchinspiritualand

existentialcare.

4.1.1ConceptualclarificationsSpiritualityisaninternationaltermwhichisusedbynurseacademics(Narayanasamy,

2014;Paley,2008;Pesut,2008b;Swinton&Pattison,2010)aswellasbyacademicsin

otherfieldssuchaspracticaltheology(Bueckert&Schipani,2006;Swinton&Mowat,

5

2006)andinpsychologyofreligion(Koenigetal.,2012;Paloutzian&Park,2013).

However,NorthernEuropeanandScandinaviancontextstendtobemorefamiliarwith

termssuchasviewoflife,worldview,religion,meaning-making,existentialityand

existentialquestions(Stifoss-Hanssen,1999;Stifoss-Hanssen&Kallenberg,1998;Ulland

&DeMarinis,2014).(SeeforexampleKarlsson,Friberg,WallengrenandÖhlén’s(2014)

andStrang,Henoch,Danielson,BrowallandMelin-Johansson’s(2014)Swedishstudies

aboutdyingpatients’existentialissues.)Accordingly,“itisnottobeassumedthat

Norwegiansusethetermspiritualityinclinicalpractice”(Ulland&DeMarinis,2014,p.

4).Takingthisintoaccount,thenursesinthisstudywereaskedtonarrateabouttheir

experienceswithpracticingandteachingspiritualandexistentialcareinorderto

captureasmuchin-depthdataaspossible.InlightofUllandandDeMarinis(2014)itis

interestingtonotethatthenursesdidnotdiscernbetweenspiritualandexistentialcare

duringtheinterviews.Consideringthenurses’useoftheterms,andthefactthatthese

termsoftenareusedsynonymouslyinthenursingliterature,(Bostonetal.,2011;

Boston&Mount,2006;Henoch&Danielson,2009)theterm“spiritualandexistential

care”willbeusedthroughoutthisthesis.However,itisimportanttonotethattheuseof

thesetermsvaryintheliterature,whichiscited.Forthesakeofacademicrigourthe

researchers’useofthetermswillbequoted.(SwintonandPattison(2010)forinstance

useonlytheterms“spirituality”,and“spiritualcare”.)

4.2Spiritualandexistentialcare:Thestudy’stheoreticalposition

Spiritualityisahighlydebatedconceptduetothemanyvariationswhichemergefrom

thenursingliterature(Paley,2008;Pesut,2008a).Severalresearcherspointoutthat

sincethereseemstobenosingleagreeddefinitioninthenursingliterature,theterm”

spiritualcare”isopentointerpretation(Kalish,2012;Noble&Jones,2010;Pesutetal.,

2008;Reimer-Kirkham,2009;Swinton&Pattison,2010).Itisthereforeimportantto

clarifythisstudy’stheoreticalstandpoint.

Mypreunderstandingofspiritualandexistentialcareisshapedbyseveralyearsof

experienceasaregisterednurse,caringfordyingpatientsincancerwardsandnursing

homes,mybackgroundasanordaineddeaconintheNorwegianLutheranChurch,a

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master’sdegreeintheology,(withathesisonspiritualandexistentialend-of-lifecare

basedonnarrativetheology)andmybookaboutspiritualandexistentialcareforthe

dying,basedonmymaster’sthesis(Tornøe,1996).Asanurseeducatorandresearcher,

IfindthatSwintonandPattison’s(2010)pragmaticandfunctionalunderstandingof

spiritualityinnursingcareresonateswithmyownviewpointswhichhaveevolved

throughmyownspiritualandexistentialcareexperiencesinend-of-lifecareandmy

educationalbackground.Ihavethereforechosentogroundthisstudyintheir

understandingofspiritualitybecauseitfitsthestudy’saimwhichistoilluminatethe

meaningofregisterednurses’experienceswithpracticingandteachingspiritualand

existentialcare,ratherthanclarifyingtheontologicalandconceptualquestionsabout

howtodefinespiritualandexistentialcareintheresearchliterature(Reimer-Kirkham,

2009).Thiswillbeelaboratedinthefollowing:

WhilePaley(2008)arguesthatthewiderangeofspiritualitydefinitionsrendersthe

conceptmeaninglessandinsignificant,SwintonandPattison(2010)claimthatthe

concept’sstrengthlaysinitsvagueness,andthatitcannotbedismissedjustbecauseit

doesnotfitwithastrictempiricistviewofreality.Whilehardpositivistsmayarguethat

conceptsinlanguagewhichdonotcorrespondwitheventsorthingsinthematerial

worldshouldnotbeattendedto,SwintonandPattison(2010)statethatnotallconcepts

aresimplyreferentialandtheystillaccordvaluewithinthesocialworld.Drawingon

Wittgenstein,they(2010)pointoutthatwordsareperformativeandexpressiveaswell

asreferential.Accordingly,wordsarenotessentialistintheirmeaning.Ratherthan

deliberatingoverthelexicographicalmeaningsofspirituality,theyadvocatethatitis

moreusefultodevelop“athin,vagueandfunctionalunderstandingofwhatthisword

anditscognatesmightdointheworldofhealthcare”.(Swinton&Pattison,2010,p.227)

Henceforth,theymakeitclearthatdefiningspiritualityforhealthcarepurposesisnot

thesameasclaiminganydirectontologicalstatus(Swinton&Pattison,2010).

AccordingtoSwinton(2014),anydefinitionofspiritualityinhealthcareisapragmatic,

ratherthananontologicdescription,whichmeansthatthefocusisonwhattheconcept

“does”(intermsofitseffectonhealthcarepractice),ratherthanwhatit“is”(intermsof

essentialdefinitions).Thisisillustratedinfigure1.

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Figure1:SpiritualityinNursing:Twomajortheoreticalpositions(Swinton,2014;Swinton&Pattison,2010)

SwintonandPattison(2010)arguethatspirituality,likeanyotherconcepthasalways

beenandinevitablywillbeasocialconstruction.Butthatisnottosaythatitisnothing

butasocialconstruct.Whilespiritualitymaywellhaveanontologyitisclearthatithas

beeninterpretedinvariouswaysandthatthecontextswheretheseinterpretative

actionstakeplacearesignificant.SwintonandPattison(2010)pointoutthatspirituality

isconstructedindifferentwaysbyvariousreligioustraditions,spiritualmovements,

beliefsystems,culturesandcontext,andnotleastbyparticularindividualsinspecific

circumstances.Accordingly,themeaningofspiritualityisnecessarilyemergentand

dialectical;itisshapedandformedbythecontextwithinwhichspirituallanguageis

expressed(Swinton&Pattison,2010).Sincelife,deathandillnessismessyandchaotic,

itisunreasonabletoexpectthatpracticesandconceptsassociatedwiththeemergent

termofspiritualitywillbeconsistent,coherentanduniversallyvalid.Rather,thevalue

ofthelanguagesthatdeployspiritualityanditspracticalandtheoreticalvalueslayin

theircontingent,evolutionaryandcontextualusage(Swinton&Pattison,2010).

Furthermore,SwintonandPattison(2010)notethatmanyofthekeytermsthatare

usedwithinhealthcare(includinghealthcareitself!)aresimilarlyemergent,

Pragmaticandfunctionalistdefintion:

Ontologicaldefinition"Theessenceofspirituality"

Focuson

whatitdoesFocuson

Whatitmeans

Spirituality

8

constructedandchanging.Theterms“community”,“care”,“love”and“friendship”for

instance,areequallyvague,contestedandmulti-orpolyvalent,asspiritualitybut

nonethelessimportantandnecessary.Thus,thereisnoinherentreasonwhyalackof

clarityshoulddenotealackofsignificance.Rather,multipledefinitionsmaybe

indicativeofthenecessityandtheflexibilityofthetermtomeetparticularneedsthat

wouldotherwisegounmet(Swinton&Pattison,2010).AsSwinton(2014,p.163)points

out:“Spiritualityisunabashedlyafluidanddeeplypragmaticconceptthatshiftsand

changesaccordingtothecontextwithwhichitisconstructedandtheneedsitis

attemptingtomeet.”

AccordingtoSwintonandPattison(2010),inawesternsecularizedhealthcaresystem

anemphasisonspiritualityattemptstocapturesomethingofthephenomenologyof

illness(thelivedexperienceofbeingill)whichhasbeenunderplayedbyhighly

medicalizedmodesofhealthcarestrategyanddelivery.Spiritualityinahighly

secularizedhealthcarecontextseekstorecapturethosedimensionsofthehuman

personthatwereonceexpressedinreligiouslanguageandthatarenotcaptured

effectivelybybiomedicaldiscourse,suchas“theimportanceofmeaning,purpose,hope,

love,Godandrelatedness”(Swinton&Pattison,2010,p.232).SwintonandPattison

(2010)pointoutthatsuchissuesoftencometovitalprominenceduringtheexperience

ofbeingill.Accordingtothem(2010),spiritualcarecannotbeunderstoodasasingle

task,orevenadiscreteseriesoftasks.Rather,itdenotesthemultifarious,disparateand

pluriformskillsandperspectivesthatnursesandcareworkersneedtolearninorderto

caterwellforcertainaspectsoftheexperienceofillnessasitislivedoutwithin

particularhealthcarecontexts.

SwintonandPattison(2010)notethatthetermspiritualityandthediscoursethat

surroundsit,canatitsbest,functionasasensitizingconceptthatdrawsourattentionto

suchissuesasmeaning,purpose,relationality,hope,value,love,Godandtranscendence,

areas,whichwellmaybeoverlookedinhealthcare,withoutthissensitizingfunction.

Accordingtothem(2010),spiritualityisnotperceivableasasinglething,butratherasa

responsetoavarietyofhumanquests,whichoftenareactivatedintimesofillnessand

duress.Thus,ifoneaspectoffunctionalspiritualityisthehumansearchformeaning,

thencarerswillneedtodevelopapproachesandmethodswhichenablethemtodeal

9

withtheexistentialquestsofpeopleintimesofillness.Ifspiritualitydenotesaquestfor

hope,thedesireforrelationshipsortheconstructionofpurpose,variousapproaches

andtechniqueswillberequiredtoenablenursestocarewellforthisaspectofpeople’s

livedexperienceofillness.IfspiritualityisasearchforGodandthetranscendent,then

facilitatingthatquestrequiresaparticularsetofskillsandknowledgeofreligious

traditions,theology,religiouspracticesoratleastanabilitytorecognizetheneedandto

refertoappropriatepersons(Swinton&Pattison,2010).

Forthepurposeofthisstudy,SwintonandPattison’s(2010,p.229)threemost

importantpointsare:

1. Intimesofillness,whatmightlooselybecalledspiritual,meaning,identityand

purposeissuesmaycometothefore,evenwhenreligionandspiritualityformally

definedhavenotpreviouslybeenofsignificanceforthepatient.“Itisinsuch

situationsinthe‘everydayness’oftheirlivesthatpeoplearemostlikelytothink

about‘spiritual’issuesortohave‘spiritualneeds’howeverinchoateorill-

articulated”.(Swinton&Pattison,2010,p.229)

2. Itseemstobethecasethatordinarypeople,patients,carersandprofessional

healthcareworkersseemtofindthelanguageofspiritualitytobefunctional,helpful

andmeaningfulespeciallyduringtimesofillnessandduress(WHO,1998),despite

thelackofcleardefinitionsofwhatspiritualitymightmeaninreferentialterms.

Thereisevidencetosuggestthatthevoices,habitsandperceptionsofordinary

peopleshouldbecloselyattendedtoinanyaspectofhealthcare,andespecially

whenitappearstorelatecloselytoissuesofpurpose,identityandtheself,asthe

languageofspiritualityoftendoes.

3. Ifillpeopleandtheircarersareusingtheconceptofspirituality-“andusingitwith

earnestnessandseriousintent,primafacie,theirviewsshouldbetakenseriouslyby

academicsandhealthcareproviders”.(Swinton&Pattison,2010,p.229)(However,

asnotedinsection4.1.1,itisimportanttobeawarethatinNorthernEuropeanand

Scandinaviancontexts,patientsandnursestendtobemorefamiliarwithtermssuch

10

asviewoflife,worldview,religion,meaning-making,existentialityandexistential

questions.)

InlinewithSwintonandPattison(2010),theobjectiveofthisstudyisnottoquestion

thevalidityofthenurses’languageordefinitionsofspiritualitybuttolistentothemin

ordertoexplorethemeaningoftheirlivedexperienceswithpracticingandteaching

spiritualandexistentialcare.

4.3Whyresearchlivedexperience?Overmanyyearsthescientificmethodhasbecomethemostimportantmeansof

generatingevidenceabouttheworldandhumansociety,andconsiderableefforthas

beendevotedtoimplementevidencebasedpracticeinnursing(EBP)(Avis&

Freshwater,2006).However,Benner(2000a),drawingonMerlau-Ponty(1962)points

outthatscientificlanguagewhichomitsourembodiedexperienceofillness,recovery

andhealthalsoleavesoutperceptualcapacitiesthatenablereasoningandactingas

moralagentsinparticularlifeworlds.SolvollandLindseth(2015)notethat

phenomenologicallyspeaking,weunderstand”experiences”asaseriesofsignificant

eventsthatconstitutetheworldandabodilyself.Thebodyandawarenessfindtheir

placesinthisflowratherthanprecedingit.AccordingtoSolvollandLindseth(2015)

practitioners’professionalknowledgecanbe“observed”throughtheirnarrativesabout

theirexperiences.Whileeachnarrativeisunique,inthesensethatitisbasedonthe

practitioner’spersonalexperience,onepractitioner’sexperiencemayberepresentative

ofotherpractitionerswhoworkinthesamefieldofcare.Accordingly,gleaning

knowledgefromoneexamplemaybeaformofanalogicalreasoning,whichcanbe

transferableandthuscontributetosignificantlearningforotherpractitioners.

Therefore,exploringnurses’livedexperiencewithpracticingandteachingspiritualand

existentialcaremaybeausefulmeanstouncoveressentialembodied,tacitandpractical

knowledge,whichmaybetransferableandusefulforothersinend-oflifecare(Aadland,

1997).

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5.Theaimofthestudy

TheoverallaimofthisPhDthesisistoilluminatethemeaningofregisterednurses’

experienceswithpracticingandteachingspiritualandexistentialcarefordyingpatients

indifferentNorwegianhealthcarecontexts.

5.1Thespecificaims

PaperI:Todescribethemeaningofhospicenurses’livedexperiencewithalleviating

dyingpatientsspiritualandexistentialsuffering

PaperII:Todescriberegisterednurses’experienceswithspiritualandexistentialcare

fordyingpatientsinageneralhospital

PaperIII:ToilluminateapioneeringNorwegianmobilehospicenurseteachingteam’s

experiencewithteachingandtrainingcareworkersinspiritualandexistentialcarefor

thedyinginnursinghomesandhomecaresettings

5.2Theresearchquestions

PaperI:Whatarethehospicenurses’experienceswithalleviatingdyingpatients’

spiritualandexistentialsuffering?

PaperII:Whataretheregisterednurses’experienceswithalleviatingdyingpatients’

spiritualandexistentialsuffering?

PaperIII:Whatarethemobilehospicenurseteachingteam’sexperienceswithteaching

andtrainingcareworkersinhomecareandnursinghomesinspiritualandexistential

careforthedying?

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6.MethodologicalFrameworkPhenomenologicalHermeneutics

Whilemethodologyhastodowiththeoverallapproachtoaparticularresearchfield,

implyingafamilyofmethodsthatshareparticularphilosophicalandepistemological

assumptions,methodsarespecifictechniquesthatareusedfordatacollectionand

analysis.Henceforth,thechoiceoftechniques(-ormethods)usedinastudy,mustbe

consistentwithitsmethodologicalframework(Swinton&Mowat,2006).Thestudy’s

methodologicalframeworkwillnowbepresented.

Theoverallaimofthisstudyistoilluminatethemeaningofnurses’experienceswith

practicingandteachingspiritualandexistentialcarefordyingpatientsindifferent

Norwegianhealthcarecontexts.Thisdeterminedthechoicetoanchorthestudyinthe

traditionofphenomenologicalhermeneutics(Gadamer,2004;Heidegger,1962;Ricoeur,

1976,1981,1984,1992,2008)withspecialemphasisonRicoeur’s(1976)interpretation

theory.FollowingRicoeur’s(1976)lineofthought,oneperson’sexperiencecannot

directlybecomeanother’s:

Aneventbelongingtoonestreamofconsciousnesscannotbetransferredassuchintoanotherstreamofconsciousness.Yet,nevertheless,somethingpassesfrommetoyou.Thissomethingisnottheexperienceasexperienced,butitsmeaning.Hereisthemiracle.Theexperienceasexperiencedaslived,remainsprivatebutitssense,itsmeaningbecomespublic.(Ricoeur,1976,pp.15-16)

DrawingonRicoeur,theoverallaimofthisstudyistointerpretand“makepublic”the

meaningofthenurses’spiritualandexistentialcareexperiences.

Phenomenologicalhermeneutics,beingtheprocessofinterpretinganddescribing

humanexperiencetounderstandthemeaningofthatexperienceiswellpositionedasa

suitablemethodologyforhumanscienceresearch.Itisnotaresearchmethodassuch,

butratherbothatheoreticalperspectiveandmethodologythatliesbehindthemethods

employedinaparticularstudy(Tan,Wilson,&Olver,2009;VanManen,2014).

Increasinglyphenomenologicalhermeneuticsisthephilosophicalunderpinningof

choiceinqualitativehealthcareresearchandisfrequentlyusedinnursingresearch

13

(Lindseth&Norberg,2004;Sørlie,2001;Tanetal.,2009;Torjuul,2009;Ødbehr,Kvigne,

Hauge,&Danbolt,2014).

Thetraditionofphenomenologicalhermeneuticswillnowbeoutlined,drawingonthe

worksofHusserl,Heidegger,GadamerandRicoeur.Thiswillbefollowedbyan

explanationofhowRicoeur’s(1976)phenomenologicalhermeneuticalinterpretation

theoryinformedandguidedthechoiceofmethodsthatwereusedinthestudy.

6.1EdmundHusserlEdmundHusserl(1859-1938)isgenerallyregardedastheintellectualfounderof

phenomenologicalphilosophy(VanManen,1990,2014).AccordingtoPorterand

Robinson(2011)Husserl’sphilosophicalresearchisnothermeneutics.Itisnoteven

hermeneuticallyinclinedinitsmethodologybecauseheavoidstakingan“interpretive”

stanceinmanyrespects,focusinginsteadonthings(phenomena)andourconsciousness

orexperienceofthem.Nonetheless,Husserl’sphenomenologyisofinvaluable

significanceforhermeneuticsindirectly,andforthedevelopmentof“phenomenological

hermeneutics”directly.Hisinfluenceisparticularlypronouncedinthehermeneutical

developmentsofMartinHeidegger(1889-1976),Hans-GeorgGadamer(1900-2002)

andPaulRicoeur(1913-2005),allofwhomhavetakenupandexpandedtheirownform

ofphenomenology(Porter&Robinson,2011).Henceforth,thisoutlineof

phenomenologicalhermeneuticalthoughtwillbeginwithabriefdescriptionof

Husserlianphenomenology.

ForHusserlphenomenologyisadisciplinethatendeavorstodescribehowtheworldis

constitutedandexperiencedthroughconsciousacts(VanManen,1990).Husserl’s

phrase“ZudenSachen”(backtothethings)hasbecomeawatchwordin

phenomenology(VanManen,2014,p.92).Generally,“tothethings”seemtomean“to

theissuesthatmatter”.Husserldefinesphenomenologyasadescriptivephilosophyof

theessencesofpureexperiences.Heaimstocaptureexperiencesinitsprimordialorigin

withoutinterpreting,explainingortheorizing.ForHusserl,theessenceswhich

phenomenologyconcernsitselfwithare“Erlebniswesen”,essencesoflivedexperiences.

Onlyknowledgethatisderivedfromimmediateexperientialevidencecanbeaccepted

14

(VanManen,2014,p.89).Inhislastandposthumouslypublishedtext“Thecrisisof

EuropeanSciencesandTranscendentalPhenomenology”(Husserl,1970),citedinVan

Manen(1990,p.182),Husserldevelopedtheideaofthelifeworldanddescribeditas

“alreadythere”,“pregiven”,theworldasexperiencedinthe“naturalprimordialattitude”

thatof“originalnaturallife”(Husserl,1970,pp.103-186)citedinVanManen(1990,p.

182).Husserlreservedthenotionofthe“naturalattitude”tothe“taken-for-

grantedness”ofeverydaythinkingandacting(VanManen,2014).This“naturalattitude”

manifestsitselfinournaturalinclinationtobelievethattheworldexistsoutthere,

independentofourpersonalexistence.Husserlianphenomenologydoesnotdenythe

externalexistenceoftheworld.Butitemphasizestheimportanceofbeingabletoshift

from“anaturaltoaphenomenologicalattitude”inordertoperceivethingsastheygive

themselvesinlivedthroughexperience–notasexternallyrealoreternallyexistent,but

asanopennessthatinvitesustoseethemasifforthefirsttime(VanManen,2014).

Inordertoshiftfromanaturaltoaphenomenologicalattitude,Husserlproposestwo

mainmethods(Porter&Robinson,2011,p.54).Husserl’sfirstmethod,theepoché

reductionistheattempttodescribephenomenaasimmediatelyapparentinexperience.

Thisreductioninvolvesbracketingorsuspendingone’ssubjectiveorprivatefeelings,

preferences,inclinations,orexpectationsthatwouldpreventonefromcomingtoterms

withaphenomenonorexperienceasitislivedthrough(Porter&Robinson,2011,pp.

54-55).Inaddition,onealsoneedstostripawaythetheoriesorscientificconceptions

andthematizationsthatoverlaythephenomenononewishestostudy,andwhich

preventsonefromseeingthephenomenoninanon-abstractingmanner(VanManen,

1990,p.185).

Husserl’ssecondmethodiscalledtheeideticreduction(Porter&Robinson,2011).Inthe

eideticreductiononeneedstoseepastorthroughtheparticularityoflivedexperience

towardstheuniversalessenceoreidosthatliesontheothersideoftheconcretenessof

livedmeaning(VanManen,1990,p.185).Thebracketingprocedureisoftenreferredto

asthetranscendentalreduction.Itiswhatmakestheeideticreductionpossible.

However,theepochéreductionisnotmeanttoreducesomethingtoitsbasicormost

fundamentalprinciplesbuttoallowaccesstothephenomenonintheleastprejudicedor

corruptedway(Porter&Robinson,2011,pp.54-55).

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6.2MartinHeidegger

Husserlhadhopedforacontinuationofhisphilosophythroughhisformerassistantand

successor,MartinHeidegger(Porter&Robinson,2011).However,Heideggermadea

decisivebreakwithHusserl’stranscendentalphenomenologythroughhisfirstmajor

work“BeingandTime”(Heidegger,1962).ThekeypointsinHeidegger’s

phenomenologywillnowbeoutlined,basedonPorterandRobinson‘s(2011)work.In

contrasttoHusserl,Heideggerisnotinterestedinthestructuresofconsciousness,

essencesorevenknowledgeperse,butinaninvestigationintothemeaningofbeing,

(“Dasein”).Heideggerclaimsthatphenomenologycannotmerelyinvestigatepure

consciousnessbutmusttakeintoaccountthetotalityofthehumansituation,duetothe

factthatweare,eachandeveryoneofus,already“being-intheworld”.

WithHeideggerphenomenologybecomesaradicallyinterpretiveenterprise.Heclaims

thathumanexistencehasahermeneuticalstructurewhichunderliesallour

interpretationsincludingthoseoftheonticornaturalsciences;thatis,bothscientific

andculturalknowledgemustbederivedfromthestructureofbeing(Porter&Robinson,

2011).Accordingly,thereisnoneutralorunbiasedstartingplacefromwhichonemay

begintounderstand.Wearethrownintoaworldinwhichlanguage,cultureand

institutionsoflifealreadyaregiven.Sonomatterwhereorwhenwefindourselves,we

willalwaysbeconditionedbyourownhistoricalsituatedness.Henceforth,Heidegger

arguesthatwecannotpossiblybrackettheworldinordertounderstandourselvesand

thatjudgmentaboutactuallyexistentthingscannotbesuspended.Heideggerstatesthat

themeaningofthingsisknowninthecontextofourrelationshipstothemwithinthe

world.Hearguesthatweunderstandlifefromoutoflifeitself.Understandingbegins

withoursituatednessasbeing-in-theworld.Throughhermeneuticswearemaking

understandingexplicitanddisclosingthenatureofbeing,-orDaseintoourselves.

However,Heideggerpointsoutthatunderstandingmayneverbeself-evidentasifit

werecorrespondingtofactsintheworld,forDaseinhasnosingleobjectorfacttofirst

comprehend.Insteadunderstandingisinherentlycircularorhermeneutical(Porter&

Robinson,2011).

16

Heidegger’shermeneuticalcircleisbestcharacterizedintermsofpreunderstandingand

temporality(Porter&Robinson,2011).Structuresofunderstandinginvolveafore-

structurethatconstantlyprojectsuponthatwhichisalreadyunderstoodandevident.It

isananticipatorystructureorpreliminaryawarenessofmeaning.Ashistoricalbeings,

wehaveanticipationsandexpectationsofthefutureanditspossibilitiesaswellas

conditionedunderstandingfrompreviousunderstanding.Hence,allexistenceis

interpretiveandallmeaningtakesplacewithinacontextofinterpretationmediatedby

cultureandlanguage.Whatremainsininterpretationistoworkout“thethings

themselves”insteadofallowingourpre-understandingtobeguidedbymistaken

assumptionsandillusions(Porter&Robinson,2011,p.68).Evensothisworkingoutis

notatechniqueormethodmeanttoachieveunderstanding.Rather,itismeantasa

descriptionofhowunderstandingemergesasweconstantlyrespondtoourfore-

projectionandprejudgments.Understandinghappenspriortoourreflectionbecausewe

arealreadyparticipating,andthereforeunderstanding,fromaspecificorientationand

awarenessaboutoursituationandcontext(Porter&Robinson,2011).

Accordingly,forHeidegger,Daseinisanevent,anoccurrencewhereinunderstandingis

“tobe”intheworldwhichisalwaystobeunderstoodinterpretively.Heidegger’s

existentialandphenomenologicalanalysisredefineswhatitmeanstounderstand

(Porter&Robinson,2011).WhatisneededHeideggerproposes,isanexistential

analysisthatinquiresintothemeaningof“tobe”thatispresenttous,yetremainstobe

drawnout.Thismeaningwillonlybedisclosedwhenwestopattemptingtograsp

essences,factsandabstractionsandbegintolivelifewithouttryingtomanipulateit.

Knowledgeinthescientificsensemayonlybesupplementaltoourdistinctwayof

existence.Heidegger’sanalysisrestsuponadistinctionbetweentheontologicalandthe

ontic.Theonticoronticalisthefactualworldunderstoodbythesciences,suchas

chemistryandbiology.WhileDaseinhasonticqualities,asananimalinthefactual

world,“Dasein”(he,shewe)isalsounique,forDaseinaloneisconcernedwiththe

questionofbeingandwhatitmeans,“tobe”.Noneoftheotheranimalsinhabitingthe

earthareconcernedwiththemeaningofbeing.ForHeideggerthequestionofbeing

representsourdecisiontoletthequestionbeaquestionforus.Itisaturnoradecision,

aneventofrecognizingawedgebetweenbeingandbeing–anontic-ontological

difference.Wearethebeingswhoaskthequestionsofwhoweare.Wealoneareableto

17

interrogatethenatureofwhatitmeanstobe.Heidegger’sontologicalphenomenology

canbecharacterizedasahermeneuticsoflifeorwhathecalls“hermeneuticsof

facticity”.Hermeneuticsinthissenseisaninterpretationoftheconditionsand

circumstancesthatdetermineorlimitone’spossibilitiesofbeing-in-the-world(Porter&

Robinson,2011).

6.3Hans-GeorgGadamerHans-GeorgGadamerisoneoftheforemostrepresentativesofhermeneutical

phenomenology(VanManen,2014).AsaformerstudentofHeidegger,Hans-Georg

Gadamershareshisnotionthatallunderstandingishermeneuticandthatthe

hermeneuticfunctionisactuallyourbasicmodeofbeing-in-theworld(Porter&

Robinson,2011).Thetaskofhermeneutics,accordingtoHans-GeorgGadamer,isto

clarifytheconditionsinwhichunderstandingandinterpretationtakeplace(Gadamer,

2004).

ThehistoricalstrandsofFriedrichSchleiermacher(1768-1834)andWilhelmDilthey’s

(1833-1911)pioneeringhermeneutics,thephenomenologicaldescriptionofEdmund

Husserl(1859–1938)andtheontologicalanalysisofMartinHeidegger(1889-1976)all

cometogetherinGadamer’sseminalwork“WahrheitundMethode:Gründzügeeiner

philosophischenHermeneutik”(1960)translatedtotheEnglishversionas“Truthand

Method”in1975(Porter&Robinson,2011).

InthismagnumopusGadamer(2004)explicatesinaphenomenologicalmanner,the

hermeneuticmethodasithadbeenoriginallydevelopedbyFriedrichSchleiermacher

andsubsequentlybyWilhelmDiltheyandHeideggerhimself(VanManen,2014).

Schleiermacherappliedhermeneuticstotheinterpretationoftexts,andemphasizedthe

importanceofconsideringthehistoricaltemporalityandrationalityofthetext.For

Schleiermacher,hermeneuticsdealswithreconstructingthepast(VanManen,2014).

WhileGadamer(2004)agreedaboutthenecessityofapproachingtextswithopenness

andsensitivitytotheirhistoricaltraditionsandinterpretivehorizons,healsoargued

thatitwasimpossibletoplaceoneselfintheoriginalreconstructedhistoricalcontext.

18

IncontrasttoSchleiermacher’ssearchfortheauthorialintentofatext,Gadamerargues

thatancienttextsmustbeinterpretedinthecontextofone’sownsocialhistorical

existence(vanManen2014).AccordingtoGadamer(2004)thereexists:

aninsuperabledifferencebetweentheinterpreterandtheauthorthatiscreatedbyhistoricaldistance…..Therealmeaningofatext,asitspeakstotheinterpreter,doesnotdependonthecontingenciesoftheauthorandhisoriginalaudience.Itcertainlyisnotidenticalwiththem,foritisalwaysco-determinedalsobythehistoricalsituationoftheinterpreter,andhencebythetotalityoftheobjectivecourseofhistory.(Gadamer,2004,p.296)

ForGadamer(2004),hermeneuticunderstandingisachievedthroughacircular

interpretationprocess,whereonemovesbackandforthbetweenthetextasawhole

anditsindividualparts.Assuch,construingthemeaningofthewholeinvolvesmaking

senseofthepartsandgraspingthemeaningofthepartsisdependentonhavingsome

senseofthewhole:“Thusthemovementofunderstandingisconstantlyfromthewhole

tothepartandbacktothewhole.Ourtaskistoexpandtheunityoftheunderstood

meaningcentrifugally”.(Gadamer,2004,p.291)

Gadameremphasizesthatthehermeneuticcircleisnota“methodologicalcircle”,rather

itdescribesanelementoftheontologicalstructureofunderstanding(Gadamer,2004,p.

294).ThebasicmodelofunderstandingthatGadamerfinallyarrivesatin1960in“Truth

andMethod”(Gadamer,2004),isconversationanddialogue(Malpas,2015).

ConversationalwaystakesplaceinlanguageandsimilarlyGadamerviews

understandingasalwayslinguisticallymediated.ForGadamer,understandingisa

matterofnegotiationbetweenoneselfandone’spartnerinahermeneuticaldialogue.

Henceforth,theprocessofunderstandingcanbeseenasamatterofcomingtoan

“agreement”aboutthematterathand.ForGadamer(2004),interpretationand

understandingalwaysoccurfromwithinaparticular“horizon”thatisdeterminedby

ourhistoricallydeterminedsituatedness.Accordingly,comingtoanagreement,means

establishingacommonframeworkor“horizon”.Gadamerthustakesunderstandingto

beaprocessthatinvolvesa“fusionofbothparty’shorizons”or“horizontverschmelzung”

(Malpas,2015).

19

Inasmuchasunderstandingistakentoinvolvea“fusionof“horizons”italsoinvolvesthe

formationofanewcontextofmeaningthatenablesintegrationofwhatisotherwise

unfamiliar,strangeoranomalous.Inthisrespectallunderstandinginvolvesaprocessof

mediationanddialoguebetweenwhatisfamiliarandwhatisalien,inwhichneither

remainsunaffected(Malpas,2015).Gadamer(2004)pointsoutthatinthedialogueof

understandingourprejudicescometothefore.Heclaimsthatourprejudicesplaya

crucialroleinopeningupwhatistobeunderstood,inasmuchastheythemselves

becomeevidentinthatprocess.Asourprejudicestherebybecomeapparenttous,they

canalsobecomethefocusofquestioningintheirownreturn:

Theessenceofthequestionistoopenuppossibilitiesandkeepthemopen….Infact,ourownprejudiceisproperlybroughtintoplaybybeingputatrisk.Onlybybeinggivenfullplayisitabletoexperiencetheother’sclaimtotruthandmakeitpossibleforhimtohavefullplayhimself.(Gadamer,2004,pp.298-299)

Notsurprisingly,oneofGadamer’s(2004)mostcontroversialmovesishisdefenseof

theimportanceofprejudiceininterpretation.ForGadamer,understandingrequires

presuppositionsandassumptionsthatenableunderstandingaswellas

misunderstanding(Porter&Robinson,2011).Gadamer(2004)maintainsthatwe

alwaysbringourfiniteandhistoricallyconditionedawarenesswithuswhenwe

encountersomething.Thismeansthatwemustallowourtraditionsandlongheld

assumptionstobechallengedandtested.Theremaybenonewexperienceand

understandingotherwise.Authenticexperienceshakesusawakeandopensoureyesto

thenewandunexpected,thatwhichliesbeyondourpersonalhorizon.Gadamer(2004)

pointsoutthatwithineveryunderstanding,truthispartiallyrelativetotheinterpreter’s

ownhorizonthoughneverentirelyconsumedbyit.Justlikeourlivingrelationshipto

thetruthofatext,ourwholeexperienceoflifereflectsthesameuniversalhermeneutical

dynamics.Gadamer’s(2004)descriptionofhermeneuticsintermsofwhatitmeansto

understandisnotonlyamatterofhowweknowclassicalandphilosophicaltexts,works

ofartandthelike.Rather,Gadamerianhermeneuticsisawayofdisclosingwhatit

meanstohaveanexperienceofunderstandinguniversally(Porter&Robinson,2011).

20

6.4PaulRicoeurPaulRicoeurmorethananyother,cementedtheconnectionandmutualaffinity

betweenhermeneuticsandphenomenology(Ricoeur,1981,2008;Tanetal.,2009).

Inhislandmarkessay“Phenomenologyandhermeneutics”,Ricoeur(1981)confrontsthe

questionofwhatremainsofEdwardHusserl’sphenomenologicalprograminthewake

ofHeideggerandGadamer’sdevastatingcritiqueofphenomenology.Inlinewiththe

hermeneuticsofHeideggerandGadamer,Ricoeurdiscussesourembeddednessinthe

worldoflanguageandsocialrelationshipsandtheinescapablehistoricityofall

understanding(Finlay,2012;Ricoeur,1981).Ricoeurconvincinglydemonstratesthat

whatsuccumbstothehermeneuticalcritiqueisnotphenomenologyassuch,butrather

phenomenologyinitsmostidealisticHusserlianform(Ricoeur,1981).

WhileHusserlarguedthatphenomenologyconsistsofdescribingwhatappearsin

consciousness,Ricoeur(1981,p.137)showsthataccordingtoHusserl’sownaccounts,

whateverappearsinconsciousnessisalreadytheworkoftheconstitutingego.Andin

thisconstitutionprocess,theinterpretiveisalreadyatwork(VanManen,2014).

Ricoeur(1981)pointsoutthatbeyondthesimpleoppositionbetweenphenomenology

andhermeneuticsthereexistsamutualbelongingbetweenthem.Ontheonehand,

hermeneuticsiserectedonthebasisofphenomenology,andthuspreservessomething

ofthephilosophyfromwhichitdiffers.Ontheotherhand,phenomenologycannot

constituteitselfwithoutahermeneuticalpresupposition:

…beyondthecritiqueofHusserlianidealism,phenomenologyremainstheunsurpassablepresuppositionofhermeneutics;andontheotherhand,thatphenomenologycannotcarryoutitsprogrammeofconstitutionwithoutconstitutingitselfintheinterpretationoftheexperienceoftheego.(Ricoeur,1981,p.114)

ThisbringsustothemaintenetsofRicoeur’s(1976)phenomenologicalhermeneutical

interpretationtheory,whichhaveinformedandguidedthisthesis.ForRicoeur(1976),

interpretationisthehingebetweenlanguageandlivedexperience(Geanellos,2000).In

hisfamousinterpretationtheory,Ricoeurattemptedtograftthehermeneuticalproblem

ofinterpretationtocontemporaryinsightsinphenomenology(Ricoeur,1999).

21

6.4.1Textunderstoodashumanaction

AlthoughRicoeur(1976)originallyformulatedhisinterpretationtheorywithrespectto

texts,healsopointsoutthathumanactioncanbeunderstoodasdiscourseand

interpretedastext,whenithasbeenobjectifiedandfixatedthroughwriting.

Accordingly,hisinterpretationtheorycanbeextendedintothesphereofthesocial

sciences(Ricoeur,1981).Inlightofthis,Ricoeur’s(1976)interpretationtheoryis

applicabletointerpretnurses’narrativesabouttheirexperienceswithspiritualand

existentialcare.Thiswillbeelaboratedoninthemethodssection.

6.4.2Distanciationandappropriation

Writingrendersthetextautonomouswithrespecttotheauthor’sintention.When

spokendiscourseiswrittendown,(i.e.liketheresearchinterviewsinthisstudy),the

fixateddiscourseanditsmeaningbecomesdistancedfromthespeechevent.Through

thisdistanciation,thetextbecomes“decontextualized”fromthespeecheventandits

socialandhistoricalconditions,thusopeningitselfuptoanunlimitedseriesofreadings

(Ricoeur,1976,1981,2008).Distanciationcreatesaneedtorecontextualizeand

appropriatethetext,-tofamiliarizeourselveswiththetextandmakeitourown

(Ricoeur,1976).Ricoeur(1976,p.43)pointsoutthat:

readingisthepharmakonthe“remedy”bywhichthemeaningofthetextis“rescued”fromtheestrangementofdistanciationandputinanewproximity,aproximitywhichsuppressesandpreservestheculturaldistanceandincludestheothernesswithintheowness.

Accordingly,thereexistsadialecticrelationshipbetweendistanciationand

appropriationintheinterpretationprocess:“Tomakeone’sownwhatwaspreviously

foreignremainstheultimateaimofallhermeneutics…Thisgoalisachievedinsofaras

interpretationactualizesthemeaningofthetextforthepresentreader”.(Ricoeur,1976,

pp.91-92)

22

Methodologicallydistanciationandappropriationallowresearcherstomovebeyondthe

notionthatonlytheresearchparticipants’understandingismeaningfulandorcorrect.It

alsoallowstheinterpreterstointerpretthesametextfaithfully,yetsomewhat

differentlybecauseitisacknowledgedthattextshavemanymeanings(Geanellos,2000).

6.4.3Explanationandunderstanding

Interpretingatextinvolvesmovingbeyondunderstandingwhatthetextsays(itssense)

tounderstandingwhatittalksabout(itsreference)(Ricoeur,1976,p.88).Assuch,the

text’ssenseanditsreferenceembodiesthetwostagesofRicoeur’sinterpretation

theory:(i)explanation,-orwhatthetextsaysand(ii)understanding,orwhatthetext

talksabout(Geanellos,2000).Whileexplanationisdirectedtowardanalysisofthe

internalrelationsofthetext(theparts)understandingisdirectedtowardgraspingthe

meaningsthetextdiscloses(thewholeinrelationtotheparts)Inthisway,interpretive

understandinggoesforwardinacontinualmovementbetweenthepartsandthewhole

allowingunderstandingtobeenlargedanddeepened(Geanellos,2000).“Ultimatelythe

correlationbetweenexplanationandunderstanding,betweenunderstandingand

explanationis‘thehermeneuticcircle’.”(Ricoeur,2008,p.163)Hence,thesenseofatext

isnotbehindthetext,butinfrontofit.Itisnotsomethinghidden,butsomething

disclosed:

Whathastobeunderstoodisnottheinitialsituationofdiscourse,butwhatpointstoapossibleworld.Thetextspeaksofapossibleworldandofapossiblewayoforientatingoneselfwithinit.Thedimensionsofthisworldareproperlyopenedupanddisclosedbythetext.(Ricoeur,1976,pp.87-88)

6.4.4Guessingandvalidation

Allinterpretiveactivityinvolvesadialecticbetweenguessingandvalidating(Ricoeur,

2008).Wemakeaneducatedguessaboutthemeaningofapartandcheckitagainstthe

wholeandviceversa.Inthesameway,webeginbyguessingaboutthemeaningofthe

wholeasdeterminingtherelativeimportanceofseveralparts.Throughoutthisprocess

ofguessandvalidationwecancometoanendwhenwesaythisishowweunderstand

things.Butthereisnodefiniteoutcome(Dauenhauer&Pellauer,2014,p.154).

23

Itisalwayspossibletorelatesentences,oractionstooneanotherinmorethanone

way:“Thisplurivocityistypicalofthetextconsideredasawhole,opentoseveral

readingsandtoseveralconstructions”(Ricoeur,2008,p.154).Althoughatextmayhave

severalinterpretations,someinterpretationsaremoreprobablethanothers.Itis

thereforenecessarytovalidateourguesses.Validatingguessesisclosertoalogicof

probability,thantoalogicofempiricalverification.Wevalidateaninterpretationby

vindicatingitagainstcompetinginterpretations.Thus,validationisnotverification

(Ricoeur,2008).Rather,itisan“argumentativedisciplinecomparabletothejudicial

proceduresoflegalinterpretation.Itisalogicofuncertaintyandofqualitative

probability.”(Ricoeur,2008,p.155)Guessandvalidationarecircularlyrelatedas

subjectiveandobjectiveapproachestothetext.Althoughthereisalwaysmorethanone

interpretation,allinterpretationsarenotequal.Onemustthereforetrytofindthemost

probableinterpretation.Ricoeurpointsoutthat:

Thetextisalimitedfieldofpossibleconstructions.Thelogicofvalidationallowsustomovebetweenthetwolimitsofdogmatismandskepticism.Itisalwayspossibletoargueagainstaninterpretation,toconfrontinterpretations,toarbitratebetweenthemandtoseekforanagreement,evenifthisagreementremainsbeyondourreach.(Ricoeur,2008,p.155)

Asmentionedinthebeginningofthischapter,theresearcher’schoiceofmethodsto

carryoutastudymustbeconsistentwiththestudy’smethodologicalframework

(Swinton&Mowat,2006).Thelinkbetweenthisstudy’sphilosophicalunderpinnings

andthemethodsusedinthestudy(VanManen,2014)willthereforebeexplicatedinthe

followingchapter.

24

7.ThemethodsDatawerecollectedthroughnarrativeinterviews(Mishler,1986)anda

phenomenologicalhermeneuticalinterpretationmethod(Lindseth&Norberg,2004)

waschosentoanalyzethedata.

7.1Datacollection:NarrativeinterviewsOpen-endednarrativeinterviews(Mishler,1986)wereusedtocollectthedatainall

threestudies.ThenarrativeinterviewsinpaperIandIIwereconductedasindividual

interviews,whilethenarrativeinterviewinpaperIIIwasconductedasafocusgroup

meetingwiththemobilehospicenurseteachingteam.

Ricoeur’s(2008)theoryofnarrativesstatesthatlifehasaprenarrativequalityandthat

actioncanbelookeduponasapotentialnarrative(Vandervelde,2008).Ricoeurnotes

that:

Lifeislived;historyisrecounted….Inremainingboundtotimeandtochange,historyremainstiedtoaction.….Ultimatelyhistorycannotmakeacompletebreakwithnarrativebecauseitcannotbreakwithaction,whichitselfimpliesagents,aimsandcircumstances,interactionsandresultsbothintendedandunintended.(Ricoeur,2008,p.5)

Ricoeurmaintainsthatactionandlifearestructuredororganizedintheirbeingby

narrative-likefeatures,sothattellingthestoryisnotanafter-thefactreorganizationof

whattookplace,butthemakingexplicitofwhatwasalreadyimplicitinactionandin

life.Accordingly,understandingtakestheformofnarrativesandispermeatedbya

culturalworldthatisitselfmadeofnarratives.Aninchoatenarrativestructureliesatthe

heartofpeople,thingsandevents.Narrativesarethusnotmeredescriptionsof

somethingthatwouldbeotherwiseavailableindependentlyofdescription,butare

ontologicallayers,partandparcelofthepastofactionsandexperiences(Ricoeur,2008;

Vandervelde,2008,p.141).

DrawingonRicoeur’sargumentabouttheinterconnectionbetweennarrativeand

humanexperience(Ivic,2009)itseemedreasonabletobelievethatthenarrative

25

interview(Mishler,1986)wouldbeasuitablemethodtogainaccesstotheparticipants’

experienceswithpracticingandteachingspiritualandexistentialcareforthedying.

Thiswasbasedonthepresuppositionthattheinterviewees’perspectiveswouldbebest

revealedinnarrativeswheretheyusetheirspontaneouslanguagetotalkabouttheir

experiences(Mishler,1986;VanManen,1990).AccordingtoMishler(1986,p.68)

“thereisawiderecognitionofthespecialimportanceofnarrativeasamodethrough

whichindividualsexpresstheirunderstandingofeventsandexperiences”.Mishler

(1986)pointsoutthat:“wearemorelikelytofindstoriesreportedinstudies“using

relativelyunstructuredinterviewswhererespondentsareinvitedtospeakintheirown

voices,allowedtocontroltheintroductionandflowoftopics,andencouragedtoextend

theirresponses”.(Mishler,1986,p.69)Thenarrativeinterviewswereconducted,using

oneopen-endedquestion.Clarifyingfollow-upquestionswereusedwhennecessary.

AsdiscussedinChapter4.2,spiritualcareisahighlydebatedconceptduetothemany

variationswhichemergefromthenursingliterature.Theauthorschosenottopresent

anyofthesevariationsduringtheinterviews.Theyalsoavoideddefiningpalliativeand

terminalcare,sincethesetermsareincommonandsometimeinterchangeableuse

(Clark&Seymour,1999)andthemomentwhenapatienttransitionsfrom“palliative”to

“terminal”careisdebatedintheliterature(Clark&Seymour,1999;Harlos,2010).

Accordingly,theauthorschoseanopenapproachtoensurethatthenursesfeltthey

couldnarratefreelyabouttheirexperienceswithspiritualandexistentialcareforthe

dying.Theauthorspresumedthatthiswouldgivethemthebestchancetocollectas

manyrichnarrativesaspossible.

ThehospicenursesinpaperI,andthenursesinpaperIIwereaskedthequestion:“What

areyourexperienceswithprovidingspiritualandexistentialcaretodyingpatients?”

InpaperIIIthemobilespiritualandexistentialcareteachingteamwasaskedthe

question:“Whatareyourexperienceswithteachingandsupervisingcareworkersin

existentialandspiritualcareforthedying?”

26

7.1.1Thenarrativefocusgroupinterview

Thenarrativeinterviewinthelastpartofthestudy(paperIII)wasconductedasafocus

groupmeetingbecausetheauthorswantedtocollectnarrativesaboutthegroup’s

experienceasauniquepioneermobilespiritualandexistentialcareteachingteam.

BelzileandÖberg(2012)pointoutthatfocusgroupsareusefultostudytheperceptions,

feelings,meaningsorwaysofthinkingthatareheldbyagroupwhoshareinaparticular

intersubjectivereality.Thefocusgroupisanefficientwaytoobtaindatafrom

participantswhoworktogetherdaily:“…colleaguescanrelatetoeachother’scomments

toincidentsintheirdailysharedlives.Theymayevenchallengeeachotheron

contradictionsbetweenwhattheyprofesstobelieveandhowtheyactuallybehave”.

(Kitzinger,1995,p.300)

7.2Dataanalysis:Interpretingtheinterviewtexts

DrawingontheworksofHeidegger,GadamerandRicoeur,LindsethandNorberg(2004)

underlinethatessentialmeaningissomethingthathumansarefamiliarwithinthe

practicesoflifeandthatthisfamiliarityisexpressedthroughactions,narrativesand

reflections.However,inordertostudytheessentialmeaningofresearchparticipants

livedexperience,theirnarrativesmustbewrittendownandinterpreted.Itisimportant

tonotethatwhenLindsethandNorberg(2004)usethetermessentialmeaning,their

methoddoesnotinvolvea“pure”Husserlian”phenomenologicalsearchformeaning

thatisuncontaminatedbyinterpretation.Nordoesitinvolvea“pure”hermeneutical

textinterpretation,sincetheaimoftheinterpretationistotranscendthemeaningofthe

textinordertorevealessentialtraitsofourlifeworld:“Thusweseethat

phenomenologymustbephenomenologicalhermeneutics.Essentialmeaningmustbe

studiedandrevealedintheinterpretationoftext”(Lindseth&Norberg,2004,p.147).

InLindsethandNorberg’s(2004)interpretationmethod,eachinterviewislookedupon

asatext.Theinterpretationmethodimpliesadialecticmovementbetweenthetextasa

wholeandpartsofthetext.Themethodconsistsofthreepracticalstepsinvolving:

1.Naïvereading,2.Structuralanalysis,3.Comprehensiveunderstanding.

27

7.2.1Thenaïvereading

Theaimofthenaivereadingistograspanoverallimpressionofthetextandtogain

accesstotheparticipants’livedexperience.Duringthenaïvereading,theresearcher

muststrivetoavoidmakingjudgmentsaboutthefactualinthenarratives.Rather,the

researchermustkeepanopenmind,allowingherselftobetouchedandmovedbythe

narratives.Todothis,theresearchermustshiftfroma“natural”toa“phenomenological

attitude”orinotherwords,accomplish“epoché”or“bracketing”(Lindseth&Norberg,

2004,p.147).ItisimportanttonotethatwhenLindsethandNorberg(2004)usethe

Husserlianconceptsof“essentialmeaning”,“epoché”and“bracketing”theydonotmean

thatresearchersshouldgiveuptheirpreunderstandingsinordertoarriveatapureun-

interpretedanduncontaminatedessentialmeaning.Thisisneitherpossiblenor

desirable.Researchersshouldinsteadstrivetobrackettheireagernesstoclassifythe

participants’storiesintocategories,explanationsandmodelsinordertoletthe

participantsleaveanimpressiononthem(Lindseth&Norberg,2004).Byencountering

theparticipantswithopennessandreceptivity,aspaceofattentionopensup.Whenthe

participant’s“expressioncanmakeanimpression,somethingfundamentalhappens...A

spaceofattentionopensup,inwhichwhathasbeensaidcanshowitselfwithgreater

clarity”(Lindseth,2015,p.51).

Strivingtokeepanopenmind,theauthorsrereadtheinterviewtextsseveraltimes.The

processofrereadingdrovetheanalysistowardsaphenomenologicalworld,which

allowedtheauthorstobetouchedbythenarratives.Thenaïveunderstandingofthetext

revealedthedirectionforthestructuralanalyses(Lindseth&Norberg,2004;Ricoeur,

1976,1981,1984).Theresultsfromthenaïvereadingswerediscussedbetweenthe

authors.Thenaïvereadingguidedthestructuralanalysis,whichwasthesecondstepin

theinterpretationprocess.

7.2.2Thestructuralanalysis

Thestructuralanalysisincludesvariousexaminationsofthepartsofthetextinorderto

understandandexplainwhatitsaysandhowitissaid.Thestructuralanalysiscanbe

viewedasastagebetweenanaïveandacomprehensiveinterpretation,orbetweena

28

surfaceandadeepinterpretation.Theobjectiveofthestructuralanalysiswastoexplain

whatthetextwassaying(Lindseth&Norberg,2004;Torjuul,2009).Theauthorsreread

thetranscriptsseveraltimestolookformeaningfulpartsandpatternsthatcouldbe

dividedintonarrativemeaningunits.Ameaningunitcouldconsistofonesentence,

partsofasentenceorawholeparagraphwithrelatedmeaning.Themeaningunitswere

thencondensed,comparedandreflectedupontoidentifythespiritualandexistential

carethemesandsubthemesthatpenetratedthewholeorpartsofthetext.Athememay

beregardedasathreadofmeaningthatpermeatesthetextsasawholeorpartsofit

(Lindseth&Norberg,2004;Torjuul,2009).Themeaningunits,themesandsubthemes

werediscussedandreflecteduponbytheauthors.Theprocessofreading,identifying

anddiscussingthethemesandsubthemeswererepeateduntiltheauthorsreachedan

interpretativeagreement,weretheyfeltthatthethemescorrespondedtotheirtext

interpretations.LindsethandNorberg(2004),theobjectiveofthestructuralanalysisis

toexplainwhatthetextissaying.Hence,thestructuralanalysiscanbeviewedasthe

methodicor“objective”partoftheinterpretationprocess,sincethemeaningunitsare

decontextualizedfromtheindividualaccountsandthetextasawhole(inotherwords:

thepartsandmeaningunitsareconsideredindependentlyfromtheircontextinthe

interviewtexts(Lindseth&Norberg,2004)).Torecontextualizethetext,themeaning

unitsweregroupedtogethertocreatetentativethemesaccordingtotheauthors’naïve

reading.Theauthorsvalidatedthestructuralanalysis,bycheckingtheirinterpretations,

rereadingthetextandcomparingthethemesandmeaningunitswiththeirnaïve

understandingofthetextasawhole.

7.2.3Comprehensiveunderstanding(Interpretedwhole)

Inthethirdandlaststepoftheinterpretationprocess,acomprehensiveunderstanding

wasdeveloped.Thecomprehensiveinterpretationisdevelopedthroughamergingof

theresearchers’pre-understanding,naïvereading,thestructuralanalysis,previous

researchandrelevanttheory(Lindseth&Norberg,2004;Sørlie,2001;Ødbehretal.,

2014).Todevelopacomprehensiveunderstanding,theresearchersmustreflectonthe

themesinrelationtotheresearchquestionandthecontextofthestudy(Lindseth&

Norberg,2004).Theaimofthisstepistogainadeeperunderstandingoftheinterviews

asawhole,-inRicoeur’stermstorecontextualizethetext(Ricoeur,1976).Methodically,

29

interpretationallowsactualizationsofthemeaningsofthetext.ForRicoeur(1976)this

occursthrough“appropriatingthetext”;i.e.tomakeone’sownwhatwaspreviously

foreigninthetext(Ricoeur,1976,pp.91-92).Whentheworldofthetextis

appropriated,thehorizonoftheresearcherisexpanded.Thisopensupthepossibilityof

seeingthingsdifferentlyandorientingoneselfdifferentlyintheworld.Itisthislink

betweenunderstanding,experienceandself-understandingthatgroundsRicoeur’s

theoryinexistence(Geanellos,2000;Ricoeur,1976;Torjuul,2009).Whilethe

structuralanalysisischaracterizedasthemethodicorobjectivepoleofthis

interpretationmethod,LindsethandNorberg(2004)statethatthedevelopmentofa

comprehensiveunderstandingcanbelookeduponasthemethod’snonmethodicpoleof

understandingandtheypointoutthatimaginationisimportantbecauseitisnotpossible

tofollowstrictmethodologicalrulesintheprocessofrecontextualizingthetext.

Accordingly,LindsethandNorbergemphasizethattheirphenomenological

hermeneuticalinterpretationmethodliesbetweenartandscience:“Weuseourartistic

talentstoformulatethenaïveunderstanding,ourscientifictalentstoperformthe

structuralanalysisandourcriticaltalentstoarriveatacomprehensiveunderstanding”

(Lindseth&Norberg,2004,p.152).

Todevelopacomprehensiveunderstanding,thethemesfromthestructuralanalysisin

paperI,II,IIIandthemainresultsinthethesisarediscussedinlightofrelevant

theoreticalperspectivessuchasNorberg,BergstenandLundman’s(2001)modelof

consolation.Thecomprehensiveunderstandingineachindividualstudyispresentedin

thediscussionsectionineachpaper,whilethecomprehensiveunderstandingofthe

mainresultsfromtheentirestudyispresentedinchapter10inthisthesis.

7.3Methodologicalconsiderations

Whatconstitutesqualityinqualitativeresearchandthemeanstodetermineorenhance

ithasbeenasubjectofdebateandcontroversyinrecentyears(Cho&Trent,2006;

Golafshani,2003;Morse,Barrett,Mayan,Olson,&Spiers,2008;Onwuegbuzie&Leech,

2007;Torjuul,2009).Themattersofdisputehaveprimarilyevolvedaroundissues

concerningreliabilityandvalidity.However,tothisdatenoneofthedefinitionsofthese

30

conceptsrepresentahegemonyinqualitativeresearch(Cho&Trent,2006;Golafshani,

2003;Morseetal.,2008;Onwuegbuzie&Leech,2007;Torjuul,2009).Thearrayof

criteriaandterminologyusedmakethisdiscourseproblematicandrathercomplicated.

Moreover,thereexistsnosinglesetofphilosophicalandmethodological

presuppositionsthatcanunderpinaqualitativeparadigm.Inaddition,thereexistsno

uncontestedcollectionofmethodsandstandardsforreportingandevaluating

qualitativeresearchintheliterature(Cho&Trent,2006;Golafshani,2003;Kvale&

Brinkmann,2008;Morseetal.,2008;Onwuegbuzie&Leech,2007;Torjuul,2009).

Nevertheless,qualitativeresearchersagreethatastudy’scredibilityortrustworthiness

hastobewarrantedbyconformingtosomegenerallyacceptedscientificstandards.

Suchstandardsincludemethodologicalcongruence,auditability,orrigourin

documentingandexplainingtheresearchprocess,ethicalrigourandthecredibilityor

fittingnessofthedatainterpretation(Cho&Trent,2006;Golafshani,2003;Morseetal.,

2008;Onwuegbuzie&Leech,2007;Torjuul,2009).

DrawingonLincolnandGuba(1985),Seale(1999)statesthatestablishing

trustworthinessofaresearchreportliesattheheartofissuesconventionallydiscussed

asvalidityandreliability.AccordingtoKvaleandBrinkman(2008)reliabilitypertains

totheconsistencyandtrustworthinessofresearchfindings,whilevaliditypertainsto

thedegreethatamethodinvestigateswhatitisintendedtoinvestigate.Validation

consistsofaconsistentqualitycontrolthroughouteverystageofknowledgeproduction,

ratherthananinspectionattheendoftheproductionline(Kvale&Brinkmann,2008).

FollowingKvaleandBrinkman(2008),anattempttoestablishmethodological

congruencehasalreadybeenconductedinthedescriptionofthestudy’smethodological

frameworkandmethods.Inordertostrengthenthecredibilityofthestudy,therestof

thischapterwilldiscussmethodologicaltrustworthinessrelatedtodatacollection,data

analysis,studylimitationsandthefirstauthor’spreunderstanding.

7.3.1Thetrustworthinessofthedatacollection

Thenarrativeinterviewmethodwasusedtocollectasmanyrichnarrativesaspossible

inordertoachievethestudy’soverallaim,ofilluminatingthenurses’livedexperience.

31

Theauthors’ambitionwastocaptureasmanyfeaturesanddimensionsofthenurses’

experiencesaspossibleinordertoensureauthenticityandtoavoidsuperficialdata

(Lindseth&Norberg,2004;Torjuul,2009).However,asAppleton(1995)andMishler

(1986)emphasize,thequalityofthedatageneratedthroughnarrativeinterviewsis

largelydependentontheskillsandexpertiseoftheinterviewer.

Inordertopromotetrustworthiness,theauthorsstrovetocreateapermissiveandnon-

judgingclimate,encouragingthenursestousetheirownwordsandtonarrateasopenly

andhonestlyaspossibleabouttheirexperiencesduringtheinterviews(Appleton,1995;

Mishler,1986).Nodefinitionsofspiritualandexistentialcarewereintroduced,inorder

toallowthenursestotalkfreelyaboutwhattheyconsideredasspiritualandexistential

care.Carewastakentoavoidinterruptingthenurses’narrativeflowandreflectionin

ordertogivethemenoughtimeandspacetofollowtheirownthoughtsandworkout

theirownstories.Thisrequiredtheabilitytobepatientandenduremomentsofsilence.

Theauthorsfolloweduponthethemesthatthenursesfocusedonduringtheinterview

inordertoobtainthemeaningoftheirnarratives(Gadamer,2004).Thiswasdoneby

tyingquestionsandcommentstothenarrativesandrepeatingthenurses’words

wheneverpossible(Riessman,1993).Occasionallytheauthorswoulduseprobing

questions,suchas“Whathappenedthen?”or“Couldyoupleasetellmemoreabout…?”

toencouragethenurses’narrativeflow.However,itwasnecessarytobesensitiveto

theirresponsesandreactionsinordertoavoidprobingtoomuch(attheriskofinvading

thenurses)andprobingtoolittle(attheriskofmissingoutonimportantstories).In

ordertoincreasetrustworthiness,theauthorsalsostrovetoclarifyunclearquestions

andunclearanswersinordertoreducepotentialmisunderstandingswiththenurses.

Inspiteoftheseprecautions,onecanneveravoidthatsomeresearchparticipantsmight

notbewillingto,ordaretotellstories,whileothersmaynotremember,orfindit

difficulttoexpresstheirthoughtsandfeelings.Thischallengestheresearchertopay

attentiontocuesthatcouldsuggestthatthenursesmighthavemoretosay(Lindseth&

Norberg,2004;Torjuul,2009).

Theactoftellingastorymusttakeplaceaftertheactualeventtookplace:“Lifeislived

historyisrecounted”(Ricoeur,2008,p.5).Assuch,participants’narrativesarestories

32

aboutpastexperiences.Hence,narrativesarenotstoriesconcerningfactualtruths;

rather,theyareasynthesisbetweenaperson’sexperiencedeventsandincidents.

Accordingly,arecountedstoryisalwaysmorethantheactualsumofthesingleevents

(Benzein,1999;Polkinghorne,1988;Ricoeur,2008;Sørlie,2001).Oneoftheproblems

withretrospectiveinterviewsisthatparticipantsmayreconstructthepastwitha

frameworkthattheyhavelearnedlater.Ontheotherhand,narrativeinterviewsgive

participantstheopportunitytospeakaboutwhatisimportantforthemfromtheir

memory(Sørlie,2001).Assuch,thenarrativeinterviewmethodisanimportantwayto

obtaininformationaboutparticipants’experiences.

Nevertheless,theresearchinterviewisalsoasituationwhereparticipantsenacttheir

identitiesthroughtalking,wantingtopresentthemselvesasexperienced,moraland

knowledgeable.Theymaythereforebetemptedtowithholdexperiencesthatmight

proveotherwise(Gullestad,1996;Jordens&Little,2004;Ricoeur,1992;Torjuul,2009).

However,thestudyresultsdidnotgivethisimpression.Inseveraltouchingnarratives,

thenursestoldabouttheiruncertainty;ambiguityandvulnerabilityrelatedto

alleviatingdyingpatients’spiritualandexistentialsuffering.Astheauthorsdidnot

knowthenursespersonally,thismayhavehelpedthemtoexpressthemselvesfreely.

7.3.2Thetrustworthinessofthedataanalysis

Thetrustworthinessofthedataanalysiscanbejudgediftheresearcherisopenabout

howthestepsintheanalysiswerecarriedout(Benzein,1999).Inallthreepapers,care

wastakentodescribethestepsinthephenomenologicalhermeneuticalanalysisto

allowthereadertofollowtheprocessfromthenaïvereading(step1)throughthe

structuralanalysis(step2)towardsthecomprehensiveunderstanding(step3)

(Lindseth&Norberg,2004).

Sincetheaimofthephenomenologicalhermeneuticalanalysisistoobtainthemeaning

thatisopenedupinfrontoftheinterviewtext,-nottosearchfortheparticipants’

meaningsorauthorialintent(Lindseth&Norberg,2004;Ricoeur,1976),the

researchers’interpretationscannotbereturnedtotheparticipantsforvalidationin

ordertoincreasethetrustworthinessoftheinterpretation(Riessman,1993;

33

Sandelowski,1993).Instead,validationisaccomplishedthroughthestructuralanalysis,

wheretheresultsfromthestructuralanalysisarecomparedwiththeinitial

interpretationsstemmingfromthenaïvereadingsinstep1.Thestructuralanalysisis

theobjectivepartoftheinterpretation(Lindseth&Norberg,2004;Ricoeur,1976,pp.

82-88).

Itisimportanttonotethataninterpretiveconstructionreliesoncluescontainedwithin

thetextthatpointtotheirmeaning.Thesecluespermitaninterpretationbecausethe

clueseithermakesenseorinhibitaninterpretationbecausetheydonotfit(Ricoeur,

1976).Ricoeur(1976,2008)emphasizesthatatexthasmultipleinterpretations,and

thatallinterpretationsarenotequal.Becausetherearemultiplepossiblemeanings

withinatext,theinterpretersmustmakechoicesaboutcompetinginterpretationsand

thedifferentpossibilitiesofnamingandframingthem(Torjuul,2009).Following

Ricoeur,researchersneedtoappreciatethatnosingleinterpretationcaneverexhaust

themeaningofatext.Everyinterpretationisthereforeanapproximation.Accordingly,it

istheresearchers’tasktoarguefortheirinterpretation(Benzein,1999;Geanellos,

2000).

Inordertoarriveatthemostplausibleofcompetinginterpretations,alloftheauthors

readtheinterviews,followedthepathsintheanalysisanddiscussedpossible

interpretationsuntilaconsensuswasreached.Thiskindofresearchercooperationis

calledanalysttriangulation(Benzein,1999;Patton,1990).Analysttriangulationis

aimedatreducingthepotentialbias,whichmayoccurwhenasingleresearchercollects

andinterpretsthedata.Analysttriangulationprovidesameansofmoredirectly

assessingthereliabilityandvalidityoftheresults(Benzein,1999).Theauthors’

cooperationandcriticaldiscussionsgavethemawiderframeofreference(horizon)to

interpretthetexts,sinceitenabledthemtoquestioneachother’sinterpretations.

LindsethandNorberg(2004)emphasizethattheresearchermustcheckwhetherthe

resultsfromthestructuralanalysisvalidateorinvalidatetheinitialnaïveunderstanding.

Ifthestructuralanalysisinvalidatesthenaïveunderstanding,thewholetextmustbe

rereadtodevelopanewnaïveunderstanding.Thenewnaïvereadingmustthenbe

checkedbyanewstructuralanalysis.Theresearchermustrepeattheprocessuntils/he

34

experiencesthatthenaïveunderstandingisvalidatedbythestructuralanalysis

(Lindseth&Norberg,2004).Theauthorscheckedthethemesfromthestructural

analysisinrelationtotheirnaïvereadings,whichwerefoundtobeconsistentwiththeir

initialnaïveunderstanding.Thisstrengthenedthetrustworthinessoftheir

interpretations.ThethemesarepresentedintheResultssectioninthethreepapers.

Somenurseresearchersclaimthatusingaphenomenologicalhermeneuticalmethodto

analyzefocusgroupinterviewsisacontroversialchoice.Criticsstatethat

phenomenology’semphasisonindividual,livedexperienceisinconsistentwithgroup

approaches(Webb,2003;Webb&Kevern,2001).Thiscontroversyhasbeenthoroughly

discussedinpaperIwheretheauthorsarguethatthefocusgroupapproachdoesnot

excludeindividualperspectivesandthatsubjectingfocusgroupinterviewsto

phenomenologicalhermeneuticalanalysisisconsistentwithRicoeur’s(1976)

interpretationtheorybecausetheaimofthephenomenologicalhermeneuticalanalysis

istointerpretthemeaningoftheinterviewtext,ratherthantheexperienceofindividual

participants(Lindseth&Norberg,2004;Ricoeur,1976).Thefirstauthor,whoconducted

theinterview,madesurethatalloftheteammemberswereheardandencouragedthe

lessvociferoustotalkabouttheirexperiencesinordertocapturethewholegroup’s

experienceasateachingteam.

7.3.3Rationaleforconductingaphenomenologicalhermeneuticaldataanalysis

Differentepistemologicalperspectivesandpluralismhavecreatedanarrayof

qualitativeapproaches,suchasgroundedtheory,variousformsforphenomenology,

ethnography,actionresearchandqualitativecontentanalysis.Thereisaconsiderable

overlapamongavailableapproachesintermsofmethods,proceduresandtechniques.It

canthereforebechallengingforresearcherstodeterminewhichapproachismost

suitabletoanswertheirresearchquestions(Vaismoradi,Turunen,&Bondas,2013).

Inthisstudywechosetoapplyaphenomenologicalhermeneuticalmethod(Lindseth&

Norberg,2004)toanalyzetheinterviewtexts.Itcouldalsohavebeenpossibletouse

qualitativecontentanalysis(Graneheim&Lundman,2004).Initially,thismethod

focusedonanalyzingthemanifestcontent,-whattheinterviewtextsays,itsvisible,

obviouscomponents(Graneheim&Lundman,2004,p.106).-orinRicoeur’sterms“its

35

sense”(Ricoeur,1976,pp.19-23).However,overtime,qualitativecontentanalysishas

expandedtoincludeinterpretationsofwhatthetexttalksabout,-itslatentcontent

(Graneheim&Lundman,2004,p.106),-orinRicoeur’sterms“thetext’sreference”

(Ricoeur,1976,pp.19-23).Assuch,phenomenologicalhermeneuticalanalysis(Lindseth

&Norberg,2004)andqualitativecontentanalysis(Graneheim&Lundman,2004)seem

toshareacommonaimofanalyzingnarrativematerialsbybreakingthemintorelatively

smallunitsofcontentandsubmittingthemtodescriptiveandinterpretativetreatment.

However,accordingtoSandelowskiandBarroso’s(2003)typologyofqualitative

studies,qualitativecontentanalysisemploysalowerlevelofinterpretationthan

phenomenologicalhermeneuticalapproaches.Theauthorsthereforejudgedthatit

wouldbemoresuitabletoapplyaphenomenologicalhermeneuticalmethodtoanalyze

theinterviewtextsbecausethestudy’soverallaimto“illuminatethemeaningof

registerednurses’experienceswithpracticingandteachingspiritualandexistentialcare

forthedying”demandedamethodwhichemploysahighlevelofinterpretive

complexity.AsvanManen(2014,p.226)notes:”Thephenomenologicalstudyoflivedor

existentialmeaningsattemptstodescribeandinterpretthesemeaningstoacertain

degreeofdepthandrichness.”

UsingLindsethandNorberg’s(2004)phenomenologicalhermeneuticalmethodto

interpretthenarrativeinterviewsprovedtobeagoodchoiceforthisstudy,becauseit

enabledtheauthorstointerpretthenurses’livedexperience.Theinterpretations

providedafruitfuldeparturepointtodevelopacomprehensiveunderstandingaboutthe

meaningofthenurses’experienceswithpracticingandteachingspiritualandexistential

careforthedying.

However,asmentionedearlier,phenomenologicalhermeneuticalresearchersmust

“bracket”theirjudgmentsaboutthefactualinnarrativeinterviewtextsinorderto

disclosethetexts’essentialmeaning.Itisimportanttonotethatbracketingone’s

judgmentisnotthesameasbracketingone’spreunderstanding(Lindseth&Norberg,

2004).DrawingonRicoeur(1976),LindsethandNorberg(2004)pointoutthatevery

humanbeinghasanimplicitpreunderstandingoflifewhichtheycannotfreethemselves

fromandthatresearcherscanonlyunderstandandinterprettheirinformants’

narrativesinrelationtotheirownpreunderstandings.Accordingly,tostrengthena

36

phenomenologicalhermeneuticalstudy’strustworthiness,researchersmustreflect

criticallyanddocumenthowtheirpreunderstandingshaveinfluencedtheresearch

processandthedatainterpretation.Thiswillbepresentedinthefollowing:

7.3.4Mypreunderstanding

AsmentionedinChapter4.2,whenIbeganmyresearch,Ihadapreunderstandingof

spiritualandexistentialcare,whichhadevolvedthroughmyownnursingexperiencein

palliativecareandmytheoreticalframeofreferenceinnursingandnarrativetheology.

Inretrospect,Iseethatthisbackgroundhashaditsadvantagesaswellasdisadvantages.

Ontheonehand,beinganursewithpalliativespiritualandexistentialcareexperience

gavemeanassetasaresearcher,becauseitenabledmetoestablishtrustandrapport

withthenurses.Comingfromthesamebackground,helpedmetocommunicatewith

them.Iexperiencedthatthenursesopenedupandtalkedquitefranklywithmeabout

theirchallengesandstrugglesbecauseIwas“oneofthem”.(Iinformedthembriefly

aboutmybackgroundwhenIpresentedmyselfatthebeginningofeachinterview.)

However,beingviewedas“oneofthem”,alsohaditschallenges.Whenthenursestold

memovingstories,Ioftenfeltthattheyappealedtomeforrecognition,whentheyheld

mygazeandsaidthingslike:“…-youknowwhatImean…!!?”Thiswasespecially

challengingduringmyfirstinterviews,becauseIwasnewtotheroleastheresearcher.I

quicklydiscoveredthatIwastemptedtorespondspontaneouslytotheirappealsasa

fellownurse,andIexperiencedthatIhadtomakeaconsciousefforttoinhibitmy

reactionsinordertomaintainmyroleasaresearcher.Resistingthetemptationto

confirmthatI“absolutelyunderstoodthem”asafellownurse,Imadeanefforttosettle

backandencouragethenursestotellmemoreabouttheirexperiences.Aimingtobe

faithfultoLindsethandNorberg’s(2004)method,Istrovetobracketmythoughtsand

feelingsasmuchaspossible,inordertorefrainfromjudgingorcomparingthenurses’

storieswithmyownnursingbackground(duringtheinterviewsandthroughoutthe

interpretationprocess).Iexperiencedthatthiswasabsolutelynecessaryinorderto

listenactivelyandfocusonthemeaningofthenurses’experiences.Thiscouldbe

especiallychallengingwhentheirstoriesevokedsomeofmyownmemoriesaboutdying

patientswhohadtouchedmedeeply(Tornøe,1996).

37

Duringmyfirstinterpretationattempts,IdiscoveredthatItendedtooverlaythe

interpretationswithmyownnursingexperienceandtheoreticalpreunderstandings.

However,asIgainedproficiencyintheinterpretationmethod,Iwasgraduallyabletolet

goofmynaturalattitude(already“knowing”inlightofmypreunderstanding)to

cultivateamoreopenphenomenologicalattitude(Lindseth,2015;Lindseth&Norberg,

2004).Iexperiencedthatthedialecticalprocessofcomparingmystructuralanalyses

withmyinitialnaïvereadingsexpandedmyinterpretativehorizon.Ibelievethis

reducedtheimpactofmypreunderstandingsandhelpedmetoexploreandinterpretthe

essentialmeaningsintheinterviewtranscripts.

7.3.5Studylimitations

Asthisisaqualitativestudy,itisnotreasonabletodiscusstheconceptsofvalidity,

reliabilityandgeneralizabilityintheirtraditionalsenses.Thenumberofinformantsin

qualitativeresearchprojectsisnotsufficienttoallowforgeneralizedconclusions.

However,theydoinsurestrengthandrepresentativityinrelationtotransferability,as

theypermitanin-depthinsightintothephenomenaunderstudy.Qualitativeprojects

canthereforebestatedtoshowahighcontentvalidity.Thismeansthatthereisahigh

degreeofdetailinthedata(Dehlholm-Lambertsen&Maunsbach,1997).Threetofive

informantsaresufficienttoachieveahighcontentvalidity(Kvale&Brinkmann,2008;

Mishler,1986).Ourdecisionaboutthesamplesizewasguidedbytheneedtoensurea

varietyofin-depthexperiences.Sincequalitativestudiesarenotdesignedtobe

representativeintermsofstatisticalgenerability,theymaygainlittlefromexpanding

samplesizeexceptamorecumbersomedataset,allowingforlessdepthandrichnessto

beextractedfromthematerial(Carlsen&Glenton,2011;Pope,Ziebland,&Mays,2000).

Eventhoughtheresultsinthisstudycannotbegeneralized,theresultsaredeemedas

credibleortrustworthyifpeoplewithsimilarexperiencescanrecognizetheresultsof

thestudy(Benzein,1999;Sandelowski,1993;Sørlie,2001).Inconclusionhowever,one

canargueforandagainsttheinterpretationofthisparticularphenomenological

hermeneuticalstudy,astheresultsthatarepresentedareonlyoneofseveralpossible

interpretations:

38

Aninterpretationmustnotonlybeprobable,butmoreprobablethananotherinterpretation…Itisalwayspossibletoarguefororagainstaninterpretation,toconfrontinterpretations,toarbitratebetweenthemandtoseekagreement,evenifthisagreementremainsbeyondourimmediatereach.(Ricoeur,1976,p.79)

Althoughthehospicenursesinthefirstpapermentionedthattheysometimeshad

Muslimpatientsandthattheyweresensitivetothesepatients’spiritualandexistential

needs,theyhadlimitedexperiencewithspiritualandexistentialcareforpatientsfrom

differentethnicbackgroundsand/orreligioustraditions(paperI).ThestudyinpaperII

wasconductedinasmallruralNorwegiantownwherethemajorityofthepopulation

consistedofethnicNorwegians.NoneoftheparticipantsinpaperIIandIIImentioned

thattheyhadprovidedspiritualandexistentialcaretopatientsfromotherethnic

groupsorreligiousfaiths.TheparticipantsinallthreepaperswereethnicNorwegians.

Duetothestudy’sgeographicalandculturalcontextthestudyislimitedtothe

participants’experienceswithprovidingspiritualandexistentialcaretoethnic

Norwegianpatients.AlthoughNorwayisbecominganincreasinglypluralisticand

multiculturalsociety(Botvar&Schmidt,2010;Aadnanes,2008),approximately73%of

thepopulationhaveanaffiliationtotheChurchofNorway(StatistiskSentralbyrå

(CentralBureauofStatisticsinNorway),2015).Henceforth,theresultsfromthisstudy

arestillrelevantinspiteoftheselimitations.

39

8.Thestudy

AccordingtoHalcomb,Gholizadeh,DiGiacomo,Phillips,andDavidson(2007),itis

importanttoselectpotentialparticipantsthatareabletoprovideinsightintoand

informationabouttheresearchtopicandthattheyareabletoarticulatetheir

perspectiveonrelevantissues.

PaperIandpaperIIexplorehospicenurses’andregisterednurses’spiritualand

existentialcareexperienceswithinthespecializedlevelsofcare,whilepaperIIIexplores

amobilehospicenurseteachingteam’sexperienceswithteachingandsupervisingcare

workersinspiritualandexistentialcarewithintheprimarylevelsofcare.These

healthcarecontextswerechosentocaptureabroadestpossiblerangeofnursing

experiencesrelatedtopracticingandteachingspiritualandexistentialcareforthe

dying.

Forthefirstpartofthestudy(paperI),eightexperiencedhospicenursesfroma

leadingNorwegianhospiceinamajorcitywererecruited.Sincehospicenurseswork

withdyingpatients,itseemedreasonablethatthesenurseswouldbeabletoprovide

richnarrativesabouttheirexperienceswithspiritualandexistentialcareforthedying.

Forthesecondpartofthestudy(paperII)sixregisterednursesfromamedicaland

oncologicalwardinageneralhospitalwererecruited.Incontrasttohospicenurses,

hospitalnursesmustmaintaincurativeresponsibilitiesforpatientswhileatthesame

timecaringforthedyingaspartoftheirdailywork(Costello,2006).Inthisward,eight

bedswereespeciallydesignatedforpatientswithadvancedstagesofcancer.The

authorsassumedthatthesenurseswouldhaveexperiencedthetensionbetween

managingcurativeresponsibilitiesandprovidingspiritualandexistentialcareforthe

dying.

Forthethirdpartofthestudy(paperIII)threehospicenursesinamobilespiritual

andexistentialcareteachingteamwererecruited.Thefourthauthorwasfamiliarwith

themobileteachingteamfrompreviousresearchprojectsatthehospiceandknewthat

theywereableandwillingtoparticipateinresearch.AsNorway’sfirstandonlymobile

spiritualandexistentialcareteachingteam,thesehospicenursespossessedaunique

40

experiencewithtrainingcareworkersinspiritualandexistentialcareforthedyingin

nursinghomesandhomecare.

Anoverviewofthestudy,participantsandpaperscomprisingthisthesisisshownin

table1.

Table1:Overviewofthestudy,participantsandpapersTheStudy Participants Data

collectionInterpretationMethod

Papers Focus

TheHospice Eighthospicenurses

Individualnarrativeinterviews

Phenomenologicalhermeneutical

PaperI Experienceswithpracticingspiritualandexistentialcareforthedying

Medicalandoncologicalwardinageneralhospital

Sixregisterednurses

Individualnarrativeinterviews


PaperII Experienceswithpracticingspiritualandexistentialcareforthedying

Themobilehospicenurseteachingteam

Threehospicenurses

Narrativefocusgroupinterview


PaperIII

Experienceswithtrainingcareworkersinspiritualandexistentialcareforthedying

8.1ThesettingThefirstandthirdpartsofthestudy(paperIandpaperIII)wereconductedwith

hospicenurseswhowereemployedinthesameleadinghospiceinamajorNorwegian

city.Thehospicewasanintegratedunitinasomatichospital.Thehospicenursesin

paperIperformedbedsidenursinginthehospice,whilethehospicenursesinpaperIII,

workedoutsidethehospice,ambulatingbetweenthecity’snursinghomesandhome

caresettingstoteachandtraincareworkersinspiritualandexistentialcare.Thesecond

partofthestudy(paperII)wasconductedwithregisterednurseswhoworkedina

medicalandoncologicalwardinageneralhospital.Thehospitalwassituatedinarural

Norwegiantown.

41

8.2RecruitmentstrategyApurposivesamplingstrategy(Devers&Frankel,2000;Patton,2002)wasappliedto

recruitkeyinformantsfromthechosenhealthcarecontextsinordertofulfilltheoverall

aimofthethesis.Theinclusioncriteriawerethatthenurseswereinterestedinpalliative

careandthattheyhadawidevarietyofexperienceswithspiritualandexistentialcare

fordyingpatients.Inaddition,thenursesinthethirdpartofthestudyalsoneededtobe

experiencedteachersandsupervisorsinspiritualandexistentialcareforthedying.

Forthefirstandthirdpartofthestudy(paperI,andpaperIII),theauthorscontacted

thehospiceleaderandobtainedherpermissiontocarryouttheresearch.Sheassistedin

recruitingparticipantsbyinformingthehospicenursesaboutthestudyandforwarded

theauthors’informationsheetandformalwrittenrequesttoparticipateinthestudy.

Thefirsteighthospicenursesthatsignedupforthestudywereinterviewed.Torecruit

participantsforthelastpartofthestudy(paperIII),thehospiceleaderaskedthethree

hospicenursesinthemobilespiritualandexistentialcareteachingteamiftheywanted

toparticipateinthestudyandsheforwardedtheauthors’informationsheetandformal

writtenrequesttoparticipateinthestudy.Torecruitnursesforthesecondpartofthe

study(paperII),theauthorscontactedtheheadnurseinthemedicalandoncological

hospitalwardandobtainedherpermissiontocarryouttheresearch.Sheassistedin

recruitingparticipantsbytellingthenursesaboutthestudyandsheforwardedthe

authors’writteninformationandformalrequesttoparticipateinthestudy.Thefirstsix

nursesthatsignedupforthestudywereinterviewed.

8.3ThesampleTheeightparticipantsinpaperIwereexperiencedhospicenursesbetweentheages

offorty-oneandsixty-oneyears,witheighttothirty-fiveyearsofnursingexperience.

Everyoneheldnursingdegreesespeciallyrelevantforpalliativecare,suchaspalliative

careandoncologynursing.

ThesixparticipantsinpaperIIwereexperiencedregisterednursesbetweentheages

ofthirty-sevenandsixty-oneyearswithninetotwentyyearsofnursingexperience.

Fourofthemhaddegreesinoncologynursingandpalliativecare.

42

ThethreeparticipantsinpaperIIIwereexperiencedhospicenurseswithseveral

yearsofexperienceasclinicalsupervisorsinendoflifecare.Theywerebetweenthe

agesoffifty-fiveandsixty-oneyearsold,withfivetofifteenyearsofhospicenurse

experience.Allofthemheldnursingdegreesinfieldsthatwererelevantforpalliative

care,suchaspalliativecareandoncologynursing.

Table2:Overviewoftheparticipants

TheSettings

Participants Age Education Nursingexperience

PaperITheHospice

Eighthospicenurses

41-61years

Thehospicenursesheldnursingdegreesinsuchfieldsaspalliativecareoroncologynursing

8-35years

PaperIIMedicaloncologicalwardinageneralhospital

Sixregisterednurses

37-61years

4registerednurseshaddegreesinoncologynursingandpalliativecare

9-20years

PaperIIIThehospice

Threehospicenursesinthemobileteachingteam

55-61years

Allhospicenursesheldnursingdegreesinsuchfieldsaspalliativecareoroncologynursing

5-15years

8.4Conductingtheinterviews

ThefirstandfourthauthorparticipatedinthefirstandsecondinterviewsinpaperI.The

firstauthorconductedtherestoftheinterviewsinpaperI,andalloftheinterviewsin

paperII.Thefirstandfourthauthorparticipatedinthefocusgroupinterviewinpaper

III.Thefirstauthorconductedtheinterviewwhilethefourthauthoractedassecretary,

takingfieldnotestocommentonsituationalaspects,languageandinteraction

(Malterud,2011).

Beforeeachinterview,theauthorsintroducedthemselvesandrepeatedtheinformation

aboutthestudy’saim,theinterviewprocedure,theirrolesasinterviewers,andwhat

theyexpectedfromthenurses,whowereencouragedtoaskquestionsaboutthestudy

43

andtheinterviewprocedure.Personalinformationabouteachnursewasobtainedand

writtendown,andthenursesgavetheirwrittenconsent.

TheinterviewswiththehospicenursesinpaperIandpaperIIItookplacein2012and

wereheldinthehospicemeetingroom.Theinterviewswithregisterednursesinpaper

IItookplacein2014andwereheldinameetingroomoutsidethenurses’medical-

oncologicalward.TheindividualinterviewsinpaperIandpaperIIlastedapproximately

onehour.ThefocusgroupinterviewinpaperIIIlasted80minutes.Alloftheinterviews

tookplaceduringthenurses’workinghours.Theinterviewswererecordedand

transcribedverbatimbythefirstauthor.

8.5EthicalconsiderationsThestudywasconductedaccordingtotheHelsinkideclaration(WorldMedical

Association,2001).ApprovalwasobtainedfromtheNorwegianCenterforResearch,

(Norsksamfunnsvitenskapeligdatatjeneste),projectnumber29973.Theethical

considerationsthroughouttheresearchprocesswasinformedbytheHelsinki

declaration(WorldMedicalAssociation,2001)andtheNorwegianCenterforResearch

Data’spolicyandguidelines(NSD,2016).

Theauthorsdistributedaformalwrittenrequestandashortinformationsheetabout

thestudytothenurses.Theinformationsheetdescribedthestudy’saimand

backgroundandexplainedthattheinterviewswouldberecordedandtranscribed

verbatim.Measurestoensureconfidentialityandanonymitywerealsodescribed.The

informationsheetalsostatedthatthenurseswerefreetowithdrawtheirconsentatany

giventime,duringoraftertheinterview.Theinformationwasrepeatedbeforeeach

interviewstarted.Measurestoensureconfidentialityandanonymityrelatedto

publicationwererepeatedandemphasized.Allofthenursesgavetheirwritten,

informedconsenttoparticipateinthestudy.

TheHelsinkideclaration’sethicalguidelinesforhealthcareresearch(WorldMedical

Association,2001)emphasizetheresearcher’sdutytoprotecttheparticipants’life,

health,privacy,dignityandrespect.Italsostressestheimportanceofsafeguarding

44

vulnerableanddisadvantagedindividualsfromthepotentialrisksofthestudyandthe

discomfortitmayentail.Thenursesinthisstudydidnotbelongtoavulnerableor

underprivilegedgroupinsociety,norcantheybesaidtoneedspecialprotectionfrom

theresearcher.However,patientsandtheirlovedonesplayedanimportantroleinthe

nurses’narrativesandwereatriskofbeingexposed.Thisdidnotcauseanyethical

problemsbecausethenursesmadeanefforttopreservepatients’,familymembers’and

colleagues’confidentialityandanonymitywhentheytalkedabouttheirspiritualand

existentialcareexperiences.Thenursesdidnotdiscloseanynamesintheinterviews

andtheyoccasionallyomitteddetailsfromtheirstoriestosafeguardanonymityand

confidentiality.

InScandinaviancountries,spirituality,religionandexistentialissuesareconsideredto

beprivateandsensitivefieldsofenquiry(Botvar&Schmidt,2010;DeMarinis,2008;la

Cour,2008;Aadnanes,2008).Itwasthereforeimportanttobesensitivetothisduring

theinterviewsbecauseoftheasymmetryofpowerintheinterviewee–interviewer

relationship(Mishler,1986).Choosingthenarrativeinterviewmethodwasawayto

rebalancethepowerstructurebetweentheresearcherandthenurses,becausewhena

researcherencouragesintervieweestonarrateabouttheirexperiences,s/heisalso

encouragingthemtofindandspeakintheirownvoice(Mishler,1986).

45

9.MainresultsinPapersI-III

9.1PaperIThenursesdescribedtheirpatients’sufferingasakindof“totalpain”,whichincluded

emotional,spiritualandexistentialdistressandphysicalpain.Theytoldthatthismadeit

difficulttosortoutspiritualandexistentialsuffering.Alleviatingphysicalsymptoms

wasimportant,sinceuncheckedphysicalpainwoulddrainthepatients’energytofocus

onspiritualand/orexistentialconcerns.Thenursessaidthattheyneededagoodsense

oftiming,situationalunderstandingandtheabilityto“senseandtuneinon”patients’

verbalandnon-verbalcuesduringnursingcare,inordertopickupeachpatient’s

existentialand/orspiritualdistressandtorespondadequatelytotheirneeds.

Accordingtothenurses“beingthere”fortheirpatientsliedattheheartoftheirspiritual

andexistentialcarepractice.“Beingthere”wasaboutconveyingconsolationthrough

silentpresencing,companionship,deepexistentialandreligiousconversations,andby

supportingpatients’expressionsoffaithandrituals.Thenursesexpressedthatbuilding

trustingrelationships,easingsuffering,andhelpingpatientsandtheirfamiliestofind

peace,acceptanceofdeathandreconciliation,wasdeeplymeaningfulandrewarding.

Thenursessawthatpatientswhowereunabletoexpresstheirthoughtsandfeelings

aboutdeathcouldbecomestuckinstatesofanxietyanddenial.Itwasthenurses’

impressionthatpatientswhovoicedtheirdistressdiedmorepeacefullythanthosewho

“bottledeverythingup,andtheydescribedanethicaldilemmabetweentheirwishto

helppatientsfindpeaceby“nudgingthemtoopenup”andacceptingthatsomeofthem

wouldnotorcouldnotsharetheirsuffering(p.3).Thenurseswereconcernedaboutthe

riskofviolatingtheirpatients’autonomyandintegrity,andtheystressedthattheywere

boundbytheirprofessionalethicstorespecttheirpatients’choices.Thenurses

expressedthatitwasdeeplypainfulwhentheywereunabletoreachintotheirpatients.

Bearingwitnesstodyingpatients’sufferingandpain,inspiteoftheirconsolationefforts

wasemotionallychallengingbecauseitmadethenursesfeelhelplessandvulnerable.

Theythereforeplacedgreatimportanceondebriefingandsupportfromtheircolleagues

inordertoenduretheemotionaldemandsofbeingwiththedying.

46

9.2PaperII

Thenursesexperiencedthatdyingpatients’spiritualandexistentialsufferingemerged

assubtleandelusiveentanglementsofphysical,emotional,relational,spiritualand

existentialpain.Thenursestoldthatspiritualandexistentialsuffering(whichdidnot

alwaysincludereligiousaspects)couldemergespontaneously,forexampleduring

physicalcare.Theabilitytozoominonfleetingmoments,whenpatientswantedand

neededtotalkwasthereforeviewedasanessentialskill.

Thenursesstrovetoconveyconsolationbyunburdeningtheirpatientstofacilitatea

peacefulandharmoniousdeath.Theytoldthatthiscouldinvolvehelpingpatientsto

resolvepracticalworries,(i.e.completingahomerenovation),aswellashelpingthemto

makepeacewiththeirpast,theirlovedonesandwithGod(p.6).Thenursesfelttheyhad

beenabletoconveyconsolationwhentheysawthattheireffortshadhelpedpatientsto

experienceagood,peacefulandharmoniousdeath.Witnessingthepeacefulpassingofa

patientwasdescribedasaspecialmomentthatfilledthemwithreverenceandawe.This

wasexperiencedasveryrewardingandfulfilling.Thenursesweredeeplymovedand

amazedwhenpatientssharedtheirtrustandopenness:“SometimesI’mreally

astonishedthattheychoosetosharetheirtroublesandworrieswithme!Eventhough

I’mtheirnurse,I’mstillastranger!”(p.7)

Thenursesexpressedthattheyhadanimportantfunctionas“emotionalcontainers”

whentheylistenedandencourageddyingpatientstoventtheirfeelings.“Itdoesn’tdo

anyharmifpeoplestarttocry.Iusuallytellmypatientsthattheydon’thavetofeel

ashamedoftheirtears.Tearsareonlymeltingice!”(p.8).However,thenursesalso

statedthatbearingwitnesstopatients’spiritualandexistentialdistresscouldbe

challengingbecauseitexposedthemtotheirownfeelingsoffinitudeandvulnerability.

Bearingwitnesstounconsolablepatientsprovedtobethenurses’greatestemotional

challenge.Beingunabletohelppatientstowardsapeacefuldeathcouldmakethemfeel

professionallyinadequateandhelplessandtheyfeltthattheyhadnotdoneagood

enoughjob.However,thenursesalsoemphasizedthat,whatpatientsneededmost,were

nurseswhoshowedthattheywerewillingtostandbytheirpatients,andwouldnot

abandonthemintheirtimeofneed.

47

9.3PaperIIIAccordingtothemobilehospicenurseteachingteam,careworkersfrequently

expressedthattheywerereluctanttoaddressdyingpatients’existentialandspiritual

suffering.Theteamexperiencedthatcareworkerscouldbequiteafraidoftalkingwith

patientsabouttheirexistentialandspiritualconcerns.Theteamexpressedthatmanyof

themwereafraidofsilenceand“justbeingwith”thepatient“intheroomofdeath”(p.4-

5).Theteamthereforestressedtheimportanceofhelpingthecareworkersdevelop

theircourageandcompetencytoprovidespiritualandexistentialcare.Theteam

believedthatthecareworkers’fearanduncertaintystemmedfrompersonalinsecurity

aswellasinsufficientcommunicationandlisteningskills.Theythereforeplacedgreat

emphasisontherelationalaspectofspiritualandexistentialcarewhentheytaughtthe

careworkersto“workfromtheheart”.

Theteamtaughtcareworkerstoidentifypatients’spiritualandexistentialsuffering,

initiateexistentialandspiritualconversationsandtoconveyconsolationthroughsilent

presencingandactivelistening.Theteamtransferredtheirpersonalspiritualand

existentialcareknowledgebyparticipatingactivelyinpatientcaretogetherwiththe

careworkers,andbyprovidingsupervisionandfeedbackrelatedtothesesituations.

Thiswascalled“bedsideteaching”,whichcouldtakeplaceduringmanydifferentkinds

ofpatientencounters,suchasgivingphysicalcare,doingnursingprocedures,orjust

takingpartinconversationswithpatients.Theteamemphasizedthatcriticalreflection

wasanimportantpartofbedside“learningbydoing”.Theteamthereforeplacedgreat

weightonconductingreflectivedialogueswiththecareworkersabouttheirchallenges

andexperiencesbeforeandafterthepatientencounter(p.5).

Drawingoncareworkerfeedbackandtheirownobservations,theteamconsideredthat

situated“bed-sideteaching”hadproventobeanimportanttooltodevelopcare

workers’courageandcompetencytoprovidespiritualandexistentialcareforthedying.

Theteamobservedthatcareworkersbecamemoreinvolvedandwillingtoexpose

themselvestotheirpatients’spiritualandexistentialsuffering.Theteamthoughtthis

indicatedthatthecareworkershadbecomemorecourageous:“Iseethattheydareto

involvethemselvesmoreinthesesituations,exposingtheirvulnerability.Iseethatthey

havebecomebraver.”(p.6)

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10.DiscussionInthisstudythenursesnarratedabouttheirlivedexperiencewithpracticingand

teachingspiritualandexistentialcarefordyingpatientsinthreedifferentNorwegian

healthcarecontexts.

Threethemesemergedthroughthecomprehensiveunderstanding,(discussion)ofthe

resultsinpaperI-III:Conveyingconsolation,Vulnerabilityandhelplessness,Compassion

andcourage.Todevelopthislaststepintheanalysis,thepaperswerereadasawhole,

takingintoaccounttheauthor’spreunderstanding,previousresearchandrelevant

theory.AlthoughconsolationdidnotemergeasanexplicitthemeinpaperIII,themobile

hospiceteachingteam’ssituatedbedsideteaching(p.3)provedtobeconsistentwiththe

consolationtheme,whichemergedinpaperI(p.3-5)andpaperII(p.7-8).

10.1ConveyingconsolationConveyingconsolationprovedtobeanoverarchingthemeinthestudy.Accordingto

Klass(2014),“solace”isunderstoodasasenseofsoothingwhichcaninvolvepleasure,

enjoymentordelightinthemidstofsorrow,hopelessnessanddespair,hencetobe

consoledistobecomforted.Theetymologyofthewordcomfort,carriesthesenseof

intersubjectivitybecauseitisderivedfromtheLatinfortis,whichmeansstrongor

powerfulandtheprefixcom,whichmeanswith(Klass,2014).Accordingly,toconsoleor

comfortanothermeanstostrengthenortofindstrengthtogether(Klass,2014,p.7).

Theresultsshowthatthenursesconveyedconsolationthroughactivepresencingand

relationshipmaintainingactivities,whichcouldinvolvegentlehandorfootmassages,

usingacaringtouchandlisteningandcommunicatingemphaticallywiththeirpatients

duringphysicalcare,orbyjustbeingwiththeminsharedsilence.Thenursesstroveto

createatrustingrelationalhaven,wherethedyingcouldfeelsafeenoughtoopen

themselvesandexpresstheirspiritualandexistentialdistress(paperIp.3-5andpaper

IIp.6-7).

49

ThenursesinpaperIandIIandthemobilehospicenurseteachingteaminpaperIII

emphasizedtheimportanceofseizing“thefleetingmoments”whenpatientsneededand

wantedtotalkabouttheirsuffering.Thenursesstressedthatthisdemandeda“fine

tunedantenna”(paperIIp.5),andthat“Ifyoudothingsproperlyandshowthatyou

care,existentialorspiritualdistresseventuallysurfacesifit’sthere”(paperIp.5).

Strivingto“getitright”thenursestried“totuneinon”theindividualpatient,paying

attentiontotheirenergylevelsandemotionalstates,neitherforcingnoravoiding

spiritualandexistentialconversations(paperIp.3).Themobilehospicenurseteaching

teaminpaperIIIplacedgreatemphasisonshowingthecareworkershowtousenatural

opportunitiesduringphysicalcaretoassessspiritualandexistentialneedsandto

integrateappropriateinterventions.Accordingtotheteachingteam,teachingthecare

workerstoaskpatientsthesimplequestion:“Howareyou?”couldbeenoughto“open

thedoortomeaningfulandsafedialogueswithpatientsabouttheirthoughtsand

feelings”(paperIIIp.5).Theteachingteamtaughtthecareworkerstolistenattentively

andtopayattentiontotheirpatients’facialexpressionsandbodylanguage.(paperIIIp.

5)

Theseresultssuggestthatconsolationcannotbeplanned,prescribedorimposedon

patientsthroughproceduralrulesand/orguidelines.Rather,conveyingconsolation

seemstobeadeeplypersonalandspontaneousactivity,whichdependsonthenurses’

andcareworkers’abilitytoapplytheirrelationalcompetence,creativityand

compassionateperceptivenessinordertotuneintotheparticularpatient’s

circumstances.ThisissupportedbyseveralSwedishconsolationstudies,(Norbergetal.,

2001;Roxberg,Eriksson,Rehnsfeldt,&Fridlund,2008;Söderberg,Gilje,&Norberg,

1999;Talseth,Gilje,&Norberg,2003),whichindicatethatconsolationcanonlybe

conveyedthroughcommunionanddialogueintrustingnurse-patientrelationships.

Whenthesufferingpatientbecomesopenandexpressessuffering,andwhenthenurse

mediatingconsolationbecomesopenandlistensinanemphaticandnon-judgmental

manner,theyareincommunionanddialogue.Duringthesemoments,thenurseandthe

patientmayexperiencemutualconsolation.Thesufferingpatientdrawsconsolation

fromthenurse’spresenceandthenursedrawsconsolationfromobservingthatthe

patient’sdistressedandanguishedstatemovestowardspeaceandtranquility(Norberg

etal.,2001).

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10.1.1Thehermeneuticsofconsolation

AccordingtoNorbergetal.(2001,p.551),“theimportantprerequisiteforcommunionis

asharedaffectivestate,ratherthanasharedcognitiveinterpretationofthesituation.”

However,drawingontheworksofGadamer(2004)andRicoeur(1976,2008)itcanbe

arguedthatsharingthepatient’ssufferingalsorequiresaninterpretationaldialogue

aboutthemeaningofthepatient’ssuffering.Henceforth,conveyingconsolationthrough

communionanddialoguecanalsobeviewedasahermeneuticalactivity.Thiswillbe

explicatedinthefollowing.

InNorbergetal.’s(2001)consolationmodel,communionanddialogueislinkedtotwo

domains,-thepatient’sexperienceofhisorhersufferingandthenurse’sexperienceof

thepatient’ssuffering.Henceforth,sharingtheirexperienceofthepatient’ssuffering

requiresmorethanjustsharinganaffectivestate,becausethepatient’sexperience

cannotdirectlybecomethenurse’sexperience,andviceversa:

….whatisexperiencedbyonepersoncannotbetransferredwholeassuchandsuchexperiencetosomeoneelse.Myexperiencecannotdirectlybecomeyourexperience.Aneventbelongingtoonestreamofconsciousnesscannotbetransferredassuchintoanotherstreamofconsciousness.(Ricoeur,1976,p.16)

However,Ricoeur(1976)maintainsthatsomethingistransferredfromonesphereof

lifetoanother.“Thatsomething”isnottheexperienceasexperienced,butitsmeaning.

Henceforth,experienceaslived,remainsprivate,butitssense,itsmeaningbecomes

public(Ricoeur,1976).InRicoeur’swords:“….communicationinthiswayisthe

overcomingoftheradicalnon-communicabilityofthelivedexperienceaslived”

(Ricoeur,1976,p.16).Henceforth,thenursecanonlyinterpretthemeaningofthe

patient’ssufferingthroughcommunionanddialogue,inwhichsheexperiencesthe

patientassufferingornot(Kahn&Steeves,1986).AsGadamer(2004,p.292)points

out:“Thetaskofhermeneuticsistoclarifythemiracleofunderstanding,whichisnota

mysteriouscommunionofsouls,butsharingacommonmeaning”.Henceforth,drawing

onGadamer(2004)andRicoeur(1976,2008)conveyingconsolationthrough

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communionanddialogue(Norbergetal.,2001)canbeunderstoodasakindofclinical

hermeneutics(Kahn&Steeves,1986).Humanactionsarelikeatextwhichawaitsfresh

interpretationsthatdecidetheirmeaning(Ricoeur,2008).Thus,allsignificantevents

anddeedsofhumanactionareopentoakindofpracticalinterpretation,whichisopen

toanybodywhocanread(Ricoeur,2008,p.151).FollowingRicoeur’s(1976,2008)

phenomenologicalhermeneuticallineofthought,theinterpretationofthepatient’s

sufferingdependsonthedialogicinteractionofthreeelements:thetext,thereaderand

thecontext:Thepatient’sexperienceofsufferingcanbeunderstoodasthetextwhich

thereader–nursemustinterpret,andviceversa(Kahn&Steeves,1986).Asthenurse

“reads”thepatient,thestory,andthebody,soalsothepatientalwaysengagesina

reversehermeneuticswherethepatient“reads”andinterpretsthenurse,andjudgeshis

orherinterestandcareforthepatientasauniqueperson(Schei,2006).

Cultural,spiritualandexistentialmeaningsthatthenurseandthepatientshareordo

notshareaboutsufferinginducingeventswillalsoinfluencehowtheyinterpretthe

meaningofthepatient’ssuffering.Inaddition,contextualfactorswithintheparticular

healthcaresetting,suchasphysical,psychologicalandsocioculturalenvironmental

features,alsoimpactonhowthenurseandthepatient“readandinterpret”themeaning

ofthepatient’ssuffering(DeMarinis,Ulland,&Karlsen,2011;Kahn&Steeves,1986;

Ulland&DeMarinis,2014).

Theresultsrevealthatthenurses’ownlifeexperiencesandpersonalbeliefsinfluenced

howtheyfeltaboutprovidingconsolation,especiallyrelatedtothepatients’religious

issues.Althoughthenursesacknowledgedthattheyhadaprofessionalobligationto

supportthepatients’sourcesoffaith,meaningandhope,regardlessoftheirownbeliefs,

someofthemhadmixedfeelingsaboutthisbecausetheywerenot:

veryreligiousor“veryChristian”astheyputit:“Actually,IfeelabituncomfortablewhenpatientstellmethattheyplacetheirlifeinGod’shands.Ithinkit’sprobablybecauseI’mnotabeliever.I’mveryskepticaltowardstheBibleandtheChristianfaith”.(paperIp.4)

Ingeneral,thenursesviewedreligionasaveryprivateandpersonalmatter,which

madethemwaryofimposingthemselvesontheirpatients(paperIIp.5-6).Somealso

saidthattheypreferredtoreferpatientstothehospiceorhospitalchaplainforreligious

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supportbecausetheyfeltuncertainandinsecureaboutaddressingpatients’religious

concerns(paperIp.4,paperIIp.5,paperIIIp.4-5).TwoofthenursesinpaperIhad

pursuedtheologicalstudiespriortonursing.Theircolleaguesregardedthemasvaluable

resourcesbecausetheywereabletohelppatientswiththeirspiritualandexistential

distressbycombiningtheirpersonalfaithwiththeologicalknowledgeandpastoral

counselingskills.(paperIp.4)However,inspiteoftheirambivalence,thestudyshows

thatthenursesthoughtitwasimportanttoalleviatingtheirdyingpatients’spiritualand

existentialsufferingandtheystrovetoconsolethemasbesttheycouldwithintheir

limitedtimeandresources.(paperIIp.6)

10.1.2Therelationaldimensioninthenurses’consolationnarratives

Schei(2006)pointsoutthatatherapeuticalliancebetweentheclinicianandthepatient

emergesthroughreciprocalinterpretationandprojectionwheregestures,facial

expressions,intonation,pausesandeyemovementstypicallyconveymoreinformation

thanmerewords.Assuch,meaningistransmittedonseverallevelssimultaneously;

compassionandunderstandingmaybeexpressedthroughthelookinthenurse’seyes

orthetimbreofvoice,orthespeedoftalkingwhilefactualbusinessiscarriedoutinthe

explicitverballane.Bothparticipantsinadialoguemonitorthemselves,andtheother,

includingtheother’sapparentinterpretationsofone’sownutterances,incomplex

recursiveinterplay.Thus,thedialoguecontinuallyproducesnewmeanings,basedon

whathasalreadyhappenedintheconversationandinthenurse-patientrelationship.

Importantlessonsmaybegleanedfromtheseconsiderations(Schei,2006).Tothe

extentthatpatientswithorwithoutseriousdisease,alsosuffer,i.e.experiencemental

imbalance,isolation,grief,fearandotherfeelingscommonlyassociatedwithillness,pain

andexistentialloss,theresearchliteraturesuggeststhatbecomingapartofa

therapeuticalliancemayinitselfbeconducivetohealingandadaptation(Eells,1999;

Schei,2006).Moreover,Schei(2006)assertsthatthismaybeespeciallytrue–and

valuablewhenmedicaltechnologyhaslittletoofferinthewayoffurtherdiagnosticor

therapeuticprocedures.Henceforth,receivingconsolationthroughcommunionand

dialoguewiththenurse(Norbergetal.,2001)maybeoftherapeuticvalueforthedying.

Thiswillbediscussedinlightofthreeofthestudy’sconsolationnarratives.

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1. Breakingtheboil

Inthefirstnarrative,adyingyoungcancerpatient“justwantedtofloatawayinadrug

daze.”(paperIp.4)Thenursedescribedthepatients’spiritualandexistentialpainas“a

largefesteringboil.“I’mnotsurehowwemanagedtopunctureitbecausewehadtrieda

lotofthings.”Oneday,thedoctorspontaneouslyaskedthepatientifshewasbitter

becauseshewasdyingsoyoung.Thedoctor’soutburstseemedtosnapthepatientoutof

herdrugdazebecausesheretortedthatshewasnotbittersinceherillnesshad“helped

hertogrowandmatureinwaysshecouldn’timagineevenifshehadlivedtoaripeold

age”.Accordingtothenurse,thisconversationbrokeopentheboilofsuffering,which

seemedtocreateaturningpointinthepatient’slife,becausesherosefromher

deathbed,reconnectedwithhersisterandmother,andwenthometoherflatonelast

timetosetheraffairsinorder.(paperIp.4)Andthenursethoughttoherself:“Yes!

Exactlythatquestionshiftedsomethingbecausenowwehadagirltakingbackherlife!”

2. Disappearingintoablackhole

Inthesecondnarrative(paperIIp.6),thenursetoldaboutawomanwhowasdyingof

lungcancer.Sensingheranxiety,thenurseaskedwhatshethoughtaboutdeath.The

patientfearedthatshewouldjust“disappearintoabigblackhole”whenshedied.“Isn’t

thereanythingmoreafterwards?”sheaskedthenurse.Thenursewasabletorelievethe

patient’sanxietybysharingherpersonalbeliefthatshewouldbereunitedwithher

lovedoneswhenshepassedaway.Accordingtothenurse,thepatientseemedtodraw

consolationfromthehopeofreunitingwithherdeceasedfather:“Perhapshe’sstanding

therewaitingforme!”sheexclaimed.Althoughthepatientseemedcalmer,shewasstill

worriedaboutnotbeingabletofinishrenovatingherfamily’shome.Toeaseher

worries,thenursecontactedthesocialworkerwhoorganizedherfamilyandfriendsto

completethejob.

3. ApunishmentfromGod

Thethirdandlastnarrative,whichwillbementionedhere,isanarrativeaboutadying

elderlywomanwhorefusedtoreceivemorphinebecauseshebelievedthatGodwas

punishingherthroughherpain.Inthiscasethenursehadtodealwiththepatient’s

religiousissuesbeforeshewaspermittedtorelievethepatient’sphysicalpain.

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Desperatelysearchingforawaytoreachintothepatientitsuddenlydawnedonthe

nursethatshecoulduseprayer“toturnthesituationaround”assheputit.(paperIIp.

6)Sothenurseaskedthepatientifshewantedtosay“TheLord’sPrayer”withher.

Accordingtothenurse,sharingtheprayerhelpedhertoconnectwiththepatient,which

openedupanaturalopportunitytotalkwithheraboutherpictureofapunishingand

vengefulGod.Althoughthenurseclaimedthatshewasnot“veryreligious”sheshared

herbelieveinatrustingandlovingGod:“TheGodIbelieveinlovesusandwantstohelp

us!AndnowIcanhelpyoutotakeyourpainaway,-atleastsomeofit!–Ifyou’llletme!”

(paperIIp.7)Thenursethoughtthatthepatientseemedtodrawconsolationfromthe

prayerandtheconversation,becausesheacceptedtoreceivemorphineregularlyafter

that,andaccordingtothenurse,thepatientdiedpainfreeandatpeacewithGod.

Inthesenarrativesthepatients’spiritualandexistentialsufferingseemedtoevolve

aroundtheirdisconnectedrelationshipswithself,familymembersandwithGod.The

nursesthereforestrovetohelpthepatientstoreconnectandrestoretheirrelationships

by:

Ø Challengingthepatienttofacehersuffering,insteadofescapinginadrugdaze,

whichstimulatedthepatienttotakechargeofherlife,settleheraffairsand

reconnectwithhersisterandmother(narrative1)

Ø Helpingthepatienttoovercomeherexistentialfearandlonelinessrelatedto

dying,byconveyingahopeofreconnectingwithherlovedonesinthe“here

after”(narrative2)

Ø Helpingthepatienttomaintainherfamilytiesandresponsibilitiesrelatedto

completingtherenovationofherfamilyhome(narrative2)

Ø HelpingthepatienttoconnectwithGodandtoshiftherperceptionofGodfrom

vengefulandpunishingtocaringandloving(narrative3)

InthefollowingtheseresultswillbereflectedoninlightofSulmasy’s(2002)relational

perspectiveonsuffering.AccordingtoSulmasy(2002),illnessdisturbsrelationships

bothinsideandoutsidethebody.Inspiteofthis,contemporaryscientifichealinghas

untilrecentlybeenlimitedtorestoringthephysiologicalhomeostaticrelationships

withinthepatient’sbody,(suchasrestoringadiabetespatient’sbloodsugarbalancein

relationtootherbiochemicalprocesses).Illnesshowever,disturbsmorethanthe

55

relationshipsinsidethehumanorganism.Itcontributestosufferingbecauseitdisrupts

familiesandworkplaces.Itshatterspreexistingpatternsofcoping,anditraises

questionsaboutone’srelationshipwiththetranscendent(Sulmasy,2002).Accordingly,

illnessdisturbstherelationshipbetweentheindividualpatientandhisorher

environment,includingthefamilialandsocialnexusofrelationships,whichsurround

thepatientanditdisturbstherelationshipbetweenthepatientandthetranscendent

(Sulmasy,2002).ThisissupportedbyCassel’s(1991b)work,whichshowsthat

sufferinggeneratesexistentialloneliness,becauseitalienatesthesuffererfromhisor

herrelationshipswithothers,fromtheworldandfromhisorhertranscendentsourceof

meaning.AccordingtoSulmasy(2002)healingimpliesthatgenuineholistichealthcare

attendstoallofthedisturbedrelationshipsoftheillpersonasawhole,restoringthose

thatcanberestored,evenifthepersonisnotcompletelyrestoredtoperfectwholeness.

Thismeansthatattheendoflifewherethepatient’shealthnolongercanberestored,

healingisstillpossible(Sulmasy,2002).FollowingSulmasy(2002)theconsolation

narrativescanbeunderstoodashealingsincetheyinvolverestoringthepatients’

significantrelationshipstoself,othersandthetranscendent.Theresultssuggestthat

appropriateconsolationrequiresattentiontotherestorationofalltheintrapersonaland

extrapersonalrelationshipsthatcanstillbeaddressedevenattheendoflife(Sulmasy,

2002).

10.1.3ConveyingconsolationinrelationtoSpiritual/ExistentialandPsychosocialcare

Giventhenurses’strongfocusonhelpingtheirpatientstorestoredisconnected

relationshipsitcanbediscussedwhethertheconsolationnarrativesprimarilyare

concernedwithpsychosocialcare.Withinthepalliativecarecontext,psychosocialcare

hasbeendefinedasconcernwiththepsychologicalandemotionalwellbeingofthe

patientandtheirfamily/carers,includingissuesofself-esteem,insightintoand

adaptationtoillnessanditsconsequences,communication,socialfunctioningand

relationships(Tan,Wilson,Olver,&Barton,2011).Thereexistsathindividebetween

spiritual/existentialandpsychosocialcareinthepalliativecareliterature,becausethe

importanceofrelationshipsisemphasizedinbothdomains(Sinclair&Chochinov,2012;

Tanetal.,2011).Itisthereforeunderstandablethatpsychosocialandspiritual/

existentialissuestendedtooverlapinthenurses’consolationnarratives:“Shestill

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worriedaboutherfamilybecauseshewasgoingtodiefromherkids,sointhiscase

unburdeningherwiththepracticalstuffwasanimportantpartofspiritualcare”

(narrative2,paperIIp.6).Thisissupportedbyotherstudies,whichsuggestthatin

clinicalpracticethespiritualdomaincoalesceswithotherdomainsandmaythereforebe

addressedthroughbothpsychologicalandspiritualmodalities(Sinclair&Chochinov,

2012,p.73).Itisthereforeinterestingtonotethattherelationaldimensioninthe

consolationnarrativesalsoresonatewithseveraldefinitionsthatexpressspiritualityin

relationalandtranscendentalterms.Puchalskietal.(2009)forinstance,define

spiritualityas:“theaspectofhumanitythatreferstothewayindividualsseekand

expressmeaningandpurposeandthewaytheyexperiencetheirconnectednesstothe

moment,toself,toothers,tonatureandtothesignificantorsacred”(Puchalskietal.,

2009,p.887).

ThisisinlinewithPargament(2013),whopointsoutthattherelationaldimensionof

spiritualitybecomesespeciallyapparentduringsacredmomentswhichare

characterizedbyadeepsenseofinterconnectednessandcaring.He(2013)maintains

thatsacredmomentsareextraordinarymomentswhennursescanseeintowhotheir

patientsareandtheycanseeintowhothenursesare.Duringthesemoments,thenurse

andthepatienttouchandaretouchedbyeachother.Assuch,sacredmomentsare

momentsofprofoundinterconnectedness(Pargament,2013).Thiscorrespondsto

Norbergetal.’s(2001)pointofview.Accordingtothem,consolationgivesafeelingof

meaning,homecomingandcontactwiththesacreddimension(transcendence).When

thenurseparticipatesinthepatient’spain,communionemerges.Norbergetal.(2001)

maintainthatcommunionisadeepconnectionthattouchesthesacreddimensionwhich

isakintoaconnectionwithsuchphenomenaasbeauty,joyandgoodness.Following

Pargament(2013)andNorbergetal.(2001),thenurses’consolationnarrativescanbe

understoodasdescriptionsofsuchsacredmoments.Itisimportanttonotethat

Pargament(2013)usestheterm“sacred”inapsychologicalratherthanatheological

sense.Accordingtohim(2013)“sacred”referstohumanperceptionsofqualitiesoften

associatedwiththedivineorhigherpowers.Healsopointsoutthattheseperceptions

donotreferonewayortheothertotheontologicalrealityofthesacred,higherpowers

orGod.Rather,theyreflectonhumancharacterandhumanrelationships(Pargament,

2013).Fromthisperspective,itcanbearguedthatnursesmayexperiencesacred

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momentsintheirworkwhethertheyconsiderthemselvestobereligiousornot.

Henceforthitseemsreasonabletointerpretthenurses’consolationnarrativesas

“sacredmoments”inPargament’spsychologicalsenseoftheterm,althoughsomeofthe

nursesexpressedthattheydidnotexperiencethemselvesasvery“religiousor

Christian”(paperIp.4,paperIIp.6).

Rumbold(2003,p.S12),drawingonLartey(1997),describesspiritualityasthewebof

relationshipsthatgivecoherencetoourlivesandthatreligionmayormaynotbeapart

ofsuchaweb.Rumbold(2003)pointsoutthatoftenpeopleonlybecomeawareof

strandsinthewebwhentheyarestretchedorbroken,whichmayhappenduringlife-

changingeventslikeadiagnosisofseriousillnessinoneselforlovedones.Accordingto

Lartey(1997)citedinRumbold(2003),thiswebofrelationshipsinvolvesrelationships

withplacesandthings,withourselves,withsignificantothers,withgroupsor

communitiesandwithtranscendence.Theserelationshipsformauniquepatternfor

eachofus,andeachofusneedsthatpatterntobelargelyintactinordertofeelwhole.

ThisisconsistentwithSulmasy’s(2002)relationalunderstandingofhealing.Lartey

(1997),citedinRumbold(2003).maintainsthat:“Ourwebofkeyrelationshipsdefines

whoweare,andwhenthoserelationshipsaredisrupted,wefeelvulnerable.”Klass

(1999)citedinRumbold(2003)maintainsthatagoodwaytothinkaboutspirituallifeis

tolookforthosemomentswhenwefeelmostdeeplyconnectedtoourworld.Whenwe

feelleastisolatedinsideourusualegoboundaries,wefeelapartofsomethinglarger

thanourselves,andtherestoftheworldmakessense(Klass,1999).

10.1.4ConsolationthroughExistentialmeaningmaking

DrawingonFrankl(1969),Park(2013)pointsoutthatmeaningiswidelyregardedas

centraltohumanexperience.Iffundamentalrelationsorconditionsinlifearebroken,

sourcesofmeaningareusedtorestorethebalancebetweentheindividual’s

expectationsoflifeandtherealityasitisexperiencedhereandnow.Suchreappraisal

andusageofsourcesofmeaningareessentialwhenoneisconfrontedwithdemanding

lifesituations(Sørensenetal.,2015).Norbergetal.(2001)pointoutthatpeoplewho

suffer,experiencealossofmeaningandintegritybecause“everythingfallsapart”.

InspiredbytheexistentialphilosopherSørenKierkegaard,they(2001)statethatitis“in

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thefearfulmomentsofdesolationwherethereisnomeaningleftthatabravestatement

ofconsolationpenetratesthedarknessandcreatesnewmeaning.Thishappensonthe

borderwherenothingispossibleanymore”(Norbergetal.,2001,p.545).Henceforth,

assistingpatientsintheirexistentialmeaningmaking,whichaccordingtoSchnell’s

(2009),researchmayormaynotinvolveatranscendentdimension,isalsoanimportant

partofconveyingconsolation.

Schnell(2009)definesmeaningfulnessasafundamentalsenseofmeaning,basedonan

appraisalofone’slifeascoherent,significant,directedandbelonging,andshe(2009)

categorizessourcesofmeaninginthefollowinggroups:Self-transcendence,which

concernsone’scommitmenttoobjectivesbeyondone’simmediateneeds.Verticalself-

transcendence,whichconsistsofreligionandspirituality,thatisorientatedtowardsan

immaterialcosmicpower.Horizontalself-transcendence,whichislinkedtotaking

responsibilityfor(worldly)affairsbeyondone’simmediateconcerns.Self-actualization

referstoemploying,challengingandfosteringone’scapacities.Orderislinkedtoholding

ontovalues,practicality,decencyandthetriedandtested.ThelastofSchnell’s(2009)

sourcesofmeaningiscategorizedaswellbeingandrelatedness,whichinvolves

cultivatingandenjoyinglife’spleasuresinprivacyandcompany.

Schnell’s(2009)researchonexistentialmeaningmakingtakesasecularEuropean

contextintoaccount(laCour,2008;laCour&Hvidt,2010),whichmakesitespecially

relevantforthestudy’sNorwegianhealthcarecontext,whereamajorityofthe

populationeitherdefinethemselvesas“secular”or“spiritualbutnotreligious”(Botvar&

Schmidt,2010;Aadnanes,2008).Inthefollowing,Schnell’s(2009)sourcesofmeaning

willthereforebeappliedtointerprettheconsolationnarratives.

Inthefirstnarrative(paperIp.4),thepatientwishedtowithdrawfromherexistential

sufferinginadazeofMorphineandStesolid.Inherconversationwiththepatient,the

doctoraskedthepatientifshewasbitterbecauseshewasgoingtodiesoyoung.By

confrontingthepatientwithhervulnerability,thedoctorliterally“heldupamirror”

whichchallengedthepatienttoreflectonthemeaningofhersuffering.Accordingtothe

nurse,thepatientlookedthedoctorsquarelyintheeyeandexclaimedthatshewasnot

bitterbecauseheryearsofillnesshadcontributedtogrowthandmaturitybeyondher

59

age(paperIp.4).Thenursebelievedthatthisconversationgeneratedashiftinthe

patient’swayofdealingwithhersituationbecauseshewenthometosetheraffairsin

orderandshereconnectedwithhermotherandsister.Thissuggeststhatthedoctor

stimulatedthepatient’sprocessofexistentialmeaningmakingrelatedtohorizontal

formsofself-transcendence:self-actualization,order,wellbeingandrelatedness

(Schnell,2009).

Inthesecondnarrative(paperIIp.6),thepatient’sneedformeaningseemedtobe

relatedtoorder(wishingtocompletethefamilyhomerenovationbeforeshedied)and

horizontalself-transcendence,sincefixingupthefamilyhomealsoinvolvedthepatient’s

needformeaningbytakingresponsibilityfor(worldly)affairsbeyondherimmediate

concern(Schnell,2009).Thepatient’sneedformeaningwasalsorelatedtowellbeing

andrelatedness(Schnell,2009),becauseshewasafraidthatshewouldceasetoexist

afterdeath,andthatthiswouldcutherofffromherlovedones.Accordingtothenurse,

thepatientseemedtodrawconsolationfromthepossibilityofreunitingwithherloved

onesinthehereafter.

Inthelastnarrative(paperIIp.6-7),thepatient’sneedformeaningwaslinkedto

verticalself-transcendence,wellbeingandrelatedness(Schnell,2009).Thepatient

sufferedfromphysicalandspiritualpain,becauseshethoughtshehadtoendureher

painasGod’spunishmentforhersins.Byprayingwiththepatientandtalkingwithher

aboutwhyshethoughtGodwaspunishingher,thenursewasabletohelpthepatientto

findpeacewithGod.Thisallowedthepatienttoacceptmorphinefromthenurse,which

alleviatedherphysicalsuffering.

TosummarizetheresultsofthisinterpretationinSchnell’s(2009)terms:Conveying

consolationwasaboutassistingpatientsintheirexistentialmeaningmakingrelatedto

thehorizontalrelationaldimension:-helpingpatientstorepairandmaintaintheir

relationshipswithfamilymembers(narrative1and2).Italsoinvolvedassisting

patientsintheirexistentialmeaningmakingrelatedtotheverticalrelationaldimension:

-helpingthepatienttofindpeacewithGod(narrative3).

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ThisisinlinewithReed’s(1992)understandingofspirituality.Accordingtoher(1992),

spiritualityspecificallyreferstothepropensitytomakemeaningthroughasenseof

relatednesstodimensionsthattranscendtheselfinsuchawaythatempowersanddoes

notdevaluetheindividual.Reed(1992)pointsoutthatthisrelatednessmaybe

experiencedintra-personally(asaconnectednesswithoneself),interpersonally(inthe

contextofothersandthenaturalenvironment),andtrans-personally(referringtoa

senseofrelatednesstotheunseen,Godorpowergreaterthantheselfandordinary

sourceswhichimpliesanexpansionofboundaries,inward,outwardandupward:

“Spiritualitythenismanifestedthroughthesevariouspatternsofconnectedness,in

whichonestepsbeyondthestructuresofeverydayexistencetoendowtheordinary

withextra-ordinarymeaning”.(Reed,1992,p.350)

Thenurses’consolationeffortswhichevolvedaroundenablingtheirpatientstoregain

andmaintaintheirrelatednesstoself,significantothersandtoGodcorrespondwith

Schnell’s(2009)conceptofexistentialmeaningmakingandReed’s(1992)

transcendentalandrelationalunderstandingofspirituality.

10.1.5ThePowerofConsolingpresence

Althoughthenursesexperiencedthattheymanagedtoconsoletheirpatientswhenthey

wereabletohelpthemfindmeaningintheirsuffering,theresultsalsoshowthatthis

wasnotalwayspossible.Thenursesexpressedthat:“Thereissuchathingaspointless

suffering!”andthattheysometimesjusthadtoacceptthat:“Thingsdon’talwayshavea

deepermeaning”(paperIIp.8).Inthesesituations,thenursesfeltthatconveying

consolationby“justbeingthere”tosharethepatient’ssufferingwasmoreimportant

thantryingtoresolvetheirspiritualandexistentialissues.Thenursesexperiencedthat

embracingthesilencetogetherwiththeirpatientscouldhaveapowerfulconsoling

effect,andtheyexpressedthatthisdemandedamentalshiftfromfocusingon“doing

somethingforthepatient”to“beingwiththepatient”(paperIp.3,paperIIp.8,paperIII

p.5).Thenursesexperiencedthattheyhadanimportantfunctionas“emotional

containers”whentheyjuststoodbytheirpatients,listeningandencouragingthemto

venttheirthoughtsandfeelingswhichcouldinvolvetears,griefandsorrowaswellas

angerandfrustration:“Itdoesn’tdoanyharmifpeoplestarttocry.Iusuallytellmy

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patientsthattheydon’thavetofeelashamedoftheirtears.Tearsareonlymeltingice.”

(paperIIp.8)Thenursesalsopointedoutthatsomepatientscouldbetootiredtotalk

needingthenurse’sconsolingpresence.Eventuallytherewouldcomeapointintime

whenitwastoolateforwords,andinsomecaseswordslostallmeaningduetothe

brevityofthesituation:“Whentheyaresosickthattheyarevomitingtheirownfecal

matter,theonlythingyoucandoistobethere,holdingthem,comfortingthemand

warmingthem”.(paperIp.3)

Accordingtothenurses,whatpatientsneededmost,werenurseswhowerewillingto

endureandstandbytheirpatients,containingthepatients’emotionsandshowingthem

thattheywouldnotbeabandonedintheirtimeofneed(paperIp.3,paperIIp.8)“-just

beingtheresharingthepainandlettingthemtalk,ifthat’swhattheyneed,sometimes

that’sallyoucando”(paperIp.3).ThisissupportedbyRushtonet.al.(2009,p.407),

whodefinepresenceasthecapacityto“befullytherewithaqualityofattentionand

authenticitythatinformsrelationshipsandactions”.Accordingtothem(2009),modern

medicine’semphasison“curing,fixinganddoing”(whichmaynolongerbeappropriate

whenpeoplearedying)mustbebalancedwiththequalityofbeingpresentwiththose

whoaresuffering,andtheypointoutthatbeingpresentwiththedyingandbearing

witnesstotheirsufferingarehealingactsinthemselvesandareoften“enough”

(Rushtonetal.,2009).

10.1.6Consolationunderstoodasamoralresponsibility

AccordingtoNortvedt(1998),“toencounterapatient’spainandunderstandingthat

painassufferingistobestruckbytheother’sagonyasamoralreality”(Nortvedt,1998,

p.387).Hence,Nortvedt(1998)maintainsthatnurseshaveamoralresponsibilitytobe

answerableforthepatients’condition,pain,sufferingandvulnerability.Following

Nortvedt(1998),itcanbearguedthatnurseshavearesponsibilitytoconvey

consolationasameanstoeasetheirpatients’spiritualandexistentialsuffering.

ThiswillbeexplicatedinlightoftheNorwegiannursingphilosopherKariMartinsen’s

philosophyofcare(Martinsen,1993,2000,2006)andtheDanishphilosopherand

theologianK.E.Løgstrup’srelationalethics(Lindseth,1992,pp.102-103),withspecial

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referenceto“TheEthicalDemand”(Løgstrup,1956,1997)1.Thesethinkerswere

chosen,becausetheirrelationalperspectivesareconsistentwiththenurses’emphasis

ontherelationaldimensionofconsolation.Martinsen(1993,2000,2006)anchorsher

philosophyofcareinLøgstrup’sideasabout“theethicaldemand”(Løgstrup,1997)and

thesovereignexpressionsoflife(Løgstrup,2007)2.Astheseideasaredecisiveto

understandMartinsen’sphilosophyofcare(Delmar,2012)theywillbeoutlinedbriefly

beforeweproceedtoMartinsen’sthoughtsoncare.

“TheEthicalDemand”InTheEthicalDemand,Løgstrup(1997)maintainsthathumanbeingsarealways

alreadyentangledorintertwinedwith,andinthelifeofothers,andthatthisisabasic

ontologicalfactofhumanexistence,whichispriortoourconstitutionasindividuals.For

Løgstrup(1997),toexistashumanbeingsistoexistwithothers.Althoughwemaytend

toviewanotherperson’sworldasseparatefromourown,Løgstruppointsoutthatthis

isnotso.Onthecontrary:“Weareeachother’sworldandeachother’sdestiny”

(Løgstrup,1997,p.16)andLøgstrupisveryclearabouttheconsequencesofthismutual

entanglement.Forhim,theethicaldemandisimplied“bytheveryfactthataperson

belongstotheworldinwhichtheotherpersonholdssomethingofthatperson’slifein

hisorherhands,itisthereforeademandtotakecareofthatperson’slife”(Løgstrup,

1997,p.22).Theethicaldemandissilentinthatitisunspoken,unarticulatedand

merelyimplicit.Moreover,itisnotidenticalwithanydemandthattheotherpersonlays

onyou.Rather,itdemandsthatyou,tothebestofyourknowledge,dowhatwillbenefit

theotherperson.Inaddition,theethicaldemandisradical,unconditionalandabsolute,

whichmeansthatyoumustactexclusivelyandunselfishlyforthesakeoftheother,

regardlessofwhotheotherpersonisoryourrelationshiptothatperson(Løgstrup,

1997,pp.44-46).

1TheEthicalDemand(DenEtiskefordring),(Løgstrup,1956))wastranslatedfromtheoriginalDanishin1997.2Løgstrupelaboratedonhisconceptionof“thesovereignexpressionsoflife”inOpgørmedKierkegaard(Løgstrup,1968)andseverallaterethicalworks(vanKootenNiekerk,2007).MajorexcerptsfromtheseLøgstruptextsweretranslatedfromDanishinBeyondtheEthicalDemand(Løgstrup,2007).

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Løgstrup(2007)maintainsthatweareboundtotheworldthroughsuchsovereign

expressionsoflifeastrust,opennessofspeech,hopeandmercy.Theseexpressionsbelong

totheverybasicsoflifeandtheyaregivenbylifeitself.Theyarerelationallylivedand

experiencedandtheyappearspontaneouslythroughourengagementswithone

another.Theymakeclaimsonusthroughourembeddednessintheworld,which

accordingtoLøgstrup(2007),subjectsustotheradicaldemandtocareforothers.As

waysoftakingcareofothers,thesovereignexpressionsoflifefulfilltheethicaldemand,

-beforethedemandhasevenmadeitselffelt.However,theethicaldemanddoesnot

makeitselffeltuntilthesovereignexpressionsoflifefail.Løgstrup(2007)statesthatthe

aspectofdutyandmoralitysetsinwhenwearetemptedtopassbyapersonwhoisin

needofourhelp.Whenthedrivetoperformanactofmercystemsfromourmoral

deliberations,ouractisreducedfromaspontaneouslifeexpressiontodutyforduty’s

sake.AsLøgstrup(2007,p.76)pointsout:“DutyenterswhenIamtryingtowriggleout

ofthesituation”.Assoonasopennessofspeech,hopeandmercyareinstrumentalized

theirspontaneityisbroken,whichdestroysthemandturnsthemintotheiropposite.If

mercyforinstance,ismadetoserveoneselforathirdparty,itisnolongermercybut

unmercifulness.Accordingly,thesovereignexpressionsoflifedefybeingmadeameans

toothergoalsthantheirown,whichistheimmediateservicetoone’sneighbor

(Løgstrup,2007).However,Løgstrupdoesnotprovidespecificrulesandguidelines

abouthowtoact.Rather,heassertsthatitisuptoeachindividualtousehisorher

insight,understandingandimaginationtofigureoutwhatthedemandrequires

(Løgstrup,1997,p.22).

DrawingonTheEthicalDemand(Løgstrup,1997),KariMartinsen’scaringphilosophy

(Martinsen,1993,2000,2006)takesonarelationalperspective(Delmar,2012).Using

Løgstrup’sterms(Løgstrup,1997,2007),Martinsen(1993,2000,2006)maintainsthat

thepatientunderstoodas“theother”,makesaphysicalimpressiononthenursethrough

hisorhersenses,whichgeneratesan“appealtolookaftertheother’slife”(Martinsen,

1993,p.19).AccordingtoMartinsen(1993,2000,2006),theappealtocareforthe

patientispoweredbytheethicaldemand(Løgstrup,1997),whichchallengesustoactin

thebestinterestof“theother”and“totakecareofthelifewhichtrusthasplacedinour

hands”(Løgstrup,1997,p.18).Beingmovedandtouchedbytheethicalappealfromthe

patientcompelsthenursetocareforhimorher.Accordingly,somethingaboutthe

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patientmustappealtothenursetocreateanawarenessofthepatients’plight

(Martinsen,2000,2006).FollowingLøgstrup(Løgstrup,1997,2007)andMartinsen’s

(2000,2006)lineofthought,thenurses’spontaneousandcompassionatereactionsto

theirpatients’sufferingsuggestsanimplicitacceptanceoftheirmoralresponsibilityto

beanswerabletotheethicaldemand.AsMartinsen(2006,p.89)pointsout:“Perceiving

theotherisalreadybeinginanethicalrelationshiptohim.”

“TheMasteryofSeeing”

However,Martinsen(2000,p.17)alsonotesthatpeopleresponddifferentlytothe

sufferingofothers,andthathowtheyrespond,dependsentirelyontheirability“tosee”.

Accordingly,torespondtothepatients’ethicalappeal,Martinsen(2000,2006)asserts

thatnursesmustengagein“amasteryofseeing”.DrawingonLøgstrup’s(1971)

interpretationoftheparableabouttheGoodSamaritan,inTheNewTestament,Luke10:

25-37(Biblegateway,2011),Martinsen(2000,2006)reflectsonwhatitmeans,“tosee”.

IntheparableJesustellsaboutthereactionsofapriest,aLeviteandaSamaritanwhen

theydiscoveredahalfdeadwaylaidman.WhenthepriestandtheLevitesawthevictim,

theparablestatesthattheypassedhimbyontheothersideoftheroad,leavingthe

victimtohisowndevices:“ButaSamaritan,ashetraveled,camewherethemanwas;

andwhenhesawhim,hetookpityonhim”(Luke10:33,Biblegateway,2011).

Martinsen(2000,2006)emphasizesthatitwasthesightofthebatteredandbleeding

manthatgeneratedtheSamaritan’spityforhim.Comingovertothehalfdeadmanthe

Samaritandidnotstandthereanalyzingthesituation.Rather,thesightofthevictim’s

bodilypain,strucktheSamaritanwithagutwrenchingforce,whichpropelledhiminto

action.AsMartinsenpointsout:“TheopenandreceptiveeyesoftheSamaritanwere

struckbytheotherandthesituationhewasin,andwithpityandgreatpainhecoulddo

nothingbutnurseanddressthevictim’swounds”(Martinsen,2006,p.84).Martinsen

(2000,2006)emphasizesthattheSamaritan“sawwithhiswholebody”throughhis

sensesandwastouched.Accordingtoher,theSamaritan“sawwithhis“heart’seye”,

becausehisattentionwasdrawntothesufferingvictiminsteadofhisownpainful

feelingsandself-pity,whichwereinducedbythesightofthebatteredman(Martinsen,

2000,2006).Asthesituationbecamecleartohimheexperiencedanimmediate

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identificationwiththewoundedman,-that“theother”likehimselfwasafellowhuman

being,whileatthesametime,“theother”wasalsodifferentfromhim,asavictimin

needofhelp.Martinsen(2000,2006)assertsthatliketheSamaritan,nursesmustalso

seethroughtheir“heart’seye”inordertoperceivetheethicalappealfromthepatient.

Thenursemustidentifywiththepatientasafellowhumanbeing,whileatthesametime

beingawareoftheirdifferentness,becausethepatientisinneedofthenurse’shelp.

Thusly,drawingonLøgstrup(1971,1997),Martinsen(2000,2006)assertsthat“Seeing

withtheheart’seye”impliesthattheprofessionalnursemustdaretobeahumanbeing

whoisopentohisorheremotions,whileatthesametimeholdingthembacktoallow

thepatienttoemergeinordertofindoutwhatserveshimbest.Martinsen(2000,2006)

maintainsthatdecidingontherightandbestcarerequiresa“friendlyinteraction”

betweenthenurses’spontaneous,sensory-basedandpre-reflectiveimpressionofthe

patient(wearetouchedandmovedbeforeweunderstand)andherreflective

understandingofthepatient’sillness,(whichisbasedonherprofessionaljudgment).

Whilethenurseisspontaneouslymovedtocareforthepatientbyherimmediate

impression,herreflectiveprofessionaljudgmentenableshertoactinthebestinterestof

thepatient.

Theresultsrevealthatitcouldbechallengingtogetagriponwhatreallytroubledthe

patient.Thenursesexperiencedthatthepatients’spiritualandexistentialsufferingwas

frequentlyembeddedandentangledinawebofpsychosocialandphysicalpain,which

madeitdifficulttosortout(paperIp.5,paperIIp.5,paperIIIp.5).Theytherefore

neededtousetheirclinicaljudgmenttoreflectontheirimmediateemotional

impressionstodecideontherightcourseofactiontoalleviatetheirpatients’suffering.

Thisisillustratedinthefollowingquotes:

Irememberonemanwhowasterriblyrestlessandanxious.Hecouldn’tsleep.NomatterhowIaskedhimhejustsaidthathehurtallover.Butitmusthavebeenmorethanthephysicalpainbecausehewasreceivingstronganalgesicsthroughtwodifferentpumps.Ioftenwonderifwecouldhavedonemoreforhim.Igottheimpressionofaverysadandlonelyman.(paperIp.5)

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TherewasthisyoungwomanwithCancerofthepancreas.ShewasconstantlycravingMorphineandStesolid.Itseemedlikeshewishedtofloatawayfromallherexistentialpain,butitwasstillthere,underneaththedrugdaze.(paperIp.4)

Inthenurses’experience,such“neverending”requestsforextrapainmedicationor

tranquilizersusuallysuggestedsomekindofunderlyingdistresswhichneededfurther

lookingintoandtheyhadthereforedevelopedakeeneyetopickupimplicitclues,and

toexercisetheirclinicaljudgmenttofindthesourcesforthepatient’ssufferingandto

decideontheappropriateinterventions.

The“EthicalDemand”andthe“seductivepull”ofhelping

Asmentionedearlier,Løgstrup(1997)maintains,theethicaldemandand“thesovereign

expressionsoflifedefybeingmadeameanstoothergoalsthantheirown,whichisthe

immediateservicetoone’sneighbor.Thisimpliesthatanyothermotivationaldriveto

conveyconsolationwhetherovertorcovertcorruptsthesovereignexpressionsoflifein

thenurse-patientrelationship.However,itisimportanttonotethatthefamiliarityand

trustwhichdevelopsbetweenanurseandapatient,coupledwiththeseductivepullof

helping,thecomplexityofthepatient’streatmentneeds,andapotentiallackof

understandingofthepatient’sboundariescanthreatentheintegrityofthenurse’s

relationshipwithherpatients.Thismayultimatelyleadtoaviolationofpatient

autonomy(Peternelj-Taylor&Yonge,2003).Paradoxically,beingdeeplymovedand

touchedbyapatient’ssufferingmayputnursesatriskofoversteppingtheir

professionalboundaries(Peternelj-Taylor&Yonge,2003).Martinsen(2000,2006)

takesthisintoconsiderationinhercrucialdistinctionbetween“emotionality”and

“seeingemotions”.AccordingtoMartinsen(2000,2006)whenanurseisstrickenand

stuckin“emotionality”thenursecirclesaroundherownneedsandemotions,“and

limitstheothertobeingdrawnintoherownhorizon”,whereasintheperceptive,

“seeingemotions”thenursecentersherattentiononthepatient’sexperienceof

sufferingbecausethepatientisperceivedas“theother”whichconcernsandappealsto

thenurse(Martinsen,2006,pp.74-75).Inlightof“theethicaldemand”(Løgstrup,

1997),thisimpliesthatthepatientmustbemetwhereheorsheisspirituallyand

existentiallysituatedatthemoment.

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Itisthereforeimportanttokeepinmindthatthereexistsapowerdifferentialbetween

thenurseandthepatient,whichcannotbeoverlooked.Byitsverynaturethe

therapeuticnurse-patientrelationshipisasymmetrical.Thepatientbyvirtueofneeding

helpisautomaticallyplacedinapositionofvulnerability;whilethenurseontheother

handassumesapositionofpowerthroughtheroleofthehelper(Martinsen,2000,

2006;Peternelj-Taylor&Yonge,2003).Peternejl-TaylorandYonge(2003)pointout

thatnursesembracemanyrolesintheirpersonalandprofessionallives,andare

involvedin“thedanceofrelationships”.Ifnursesforgetwhich“dancetheyaredancing”

orwhichroletheyareassuming,theirownneedscanbecomemostimportanttothe

relationship.Henceforth,thereisaneedforcautionandethicalawareness,inorderto

avoidintrusivenessandviolationofpatientautonomy(Peternelj-Taylor&Yonge,2003).

Thisisechoedintheresultsofthestudy,whichshowthatthenursesreflectedontheir

ethicalchallengesrelatedtoencouragingpatientstosharetheirsuffering.Whilethe

nursesexperiencedthatpatientswhowereabletoexpresstheirfeelingsoftendied

morepeacefullythanthosewho“bottledeverythingup,”(paperIp.3,paperIIp.7),they

alsostressedthattheyhadtoputasidetheirownviewsandpersonalneedstoreachin

topatientswhowereunwillingorunabletosharetheirsuffering.Thenurses

emphasizedthattheywereprofessionallyandethicallyobligedtorespectthepatients’

choice.“Whoarewetojudgewhatisbestforthem”,theyreflected(paperIp.3)andthey

pointedoutthattherearenoeasyanswersbecauseeverypatientisdifferent(paperIp.

4).Itwasthereforecrucialtosensetheturningpoints,whenpatientsbecamereadyto

sharetheirsufferingandreceiveconsolation.Accordingtothenursesthisdemandeda

goodsenseoftiming,situationalunderstandingandtheabilityto“tuneinon”patients’

verbalandnonverbalcueswhilstperformingnursingcare(paperIp.5,paperIIp.5,

paperIIIp.7).

ThisresonateswithLøgstrup’s(1997,p.15)emphasisontuningintolistento“thenote,

whichisstruck”.AccordingtoLøgstrup(1997)thisisessentialineveryconversation,

becausewedeliverourselvesoverintothehandofanotherinthespeechrelationship,

whichdemandsbasictrust:“Thatallspeechtakesplaceinsuchfundamentaltrustis

evidentinthefactthatthemostcasualcommenttakesonafalsenoteifonebelievesthat

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itisnotacceptedinthesensethatisintended”.(Løgstrup,1997,p.15)Thusly,ifanurse

ignoresordoesnothearthenoteinwhatthepatientsays,thenthatnurseisatriskof

violatingherpatient’sintegrity,whichinturnwillviolatethepatients’basictrustinher.

InspiredbyLøgstrup(1997),Martinsen(2006,p.60)assertsthat“thetone”3pointstoa

commonworldandprovidesacontextofinterpretationforwhatisgoingoninthe

situation,andsheemphasizesthatthenurseandthepatienttogethermustfind“the

tone”inthesituationwhichenablesbothparties,-nurseandpatient–eachintheir

ownway,todaretocomeforth.

10.2VulnerabilityandhelplessnessWhenthenurseswereaskedtonarrateabouttheirexperienceswithspiritualand

existentialcare,theirconsolationnarrativesevolvedaroundtheireffortstohelptheir

patientstofindpeaceandharmonyduringthefinalstagesofdying(paperIandII).The

resultsshowthatthenursesfelttheyhadbeensuccessfulwhentheywereableto

unburdensomeofthepatients’mostpressingsourcesofanxietyanddistress(paperII

p.12).Thisisillustratedinthethreeconsolationnarratives,insection10.1.2,which

showthatthenursesmanagedtohelptheirpatientstorestoretheirintra,interand

transpersonalrelationships,-theirrelationshipwith,self,lovedonesandwithGod(Reed,

1992).Regainingtheserelationshipsenabledthepatientstotranscendtheisolating

spiritualandexistentiallonelinessofdying.Assuch,theseconsolationnarrativescanbe

characterizedas“successful”consolationnarratives.

However,thenursesalsonarratedabout“unsuccessful”consolationexperiences,which

couldmakethemfeelprofessionallyinadequateandhelpless.Althoughthenurses

acknowledgedthatsufferinganddyingarefactsoflife,whichcannotbecompletely

alleviated,theyfounditdifficulttoacceptthattheycouldnotalleviatetheirdying

patientsdistress(paperIp.6,paperII7-8).Thisishighlightedinthefollowingquote:

Ayoungcancerpatientanxiouslybattleddeathtillthebitterend.Allofusthoughtitwasterriblethewayhedied!Wereallytried,butnobodycouldhelphimfindpeace,becausehesimplyrefusedtodie!Wesatthereholdinghishand,listeningtohim.Buthewascompletelyinconsolable!Itwasvery,very

3(orinLøgstrup’s(1997)terms“thenote”)

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challengingandfrustratingeventhoughweknowthatweprobablydidallwecould!(paperIIp.7)

Bearingwitnesstopatientswhocontinuedtoradiateanguish,protestanddespairin

spiteofthenurses’consolationeffortswasexperiencedasemotionallychallengingand

draining.The“unconsolablepatients”werelookeduponasproblematic,formingthe

focusofpeersupportanddebriefing(paperIp.6-7,paperIIp.7-8).Inaddition,the

nursesfounditchallengingtobearwitnesstothedyingpatients’sufferingbecauseit

exposedthemtotheirownlatentfearsofmortalityandvulnerability(paperIp.6,paper

IIp.8).Asonenursepointedout:”Youhavetocometotermswithyourownthoughts

andfeelingsaboutyourownvulnerabilitytoendureworkinghereovertime.It’sa

demandingjob!Notallnursesarecutouttocareforthedying”(paperIIp.8).

InpaperIIIthemobilehospicenurseteachingteamstatedthatthecareworkers’main

obstacletoengageinspiritualandexistentialcarewastheirfearanduncertaintyof

facingdyingpatients’suffering(paperIIIp.4-6).Itseemsreasonabletoassumethat

likethenursesinpaperIandII,thecareworkers’reluctancetobewiththedying

stemmedfromtheirfearofrelatingtotheirownmortalityandvulnerability.

Whilevulnerabilityandsufferingareontologicalconditionsoflife,whichare

experiencedbyallhumans(Heidegger,1962;Turner&Dumas,2013),workingonthe

edgebetweenlifeanddeathposesdailypsychosocialchallengeswhichforcenursesand

careworkerstobecomeacutelyawareofthefragilityoflife(Najjar,Davis,Beck-Coon,&

Doebbeling,2009).Researchshowsthattheemotionalstressorsrelatedtocaringfor

patientswhoaresufferingand/ordying,placenursesandcareworkersinaunique

positionofvulnerability(Gjengedaletal.,2013).Recentresearchindicatesthat

emotionsarefeltinthebody(Back,Rushton,Kaszniak,&Halifax,2015).Thisresonates

withtheresultsinthisstudy,whichshowthatthenurses’spontaneousimpressionsof

theirpatients’sufferingcouldbesostrongthattheydescribeditintermsofphysical

sensationsintheirownbodies:

Wefeelthefearanddesperationthemomentweentertheroomeventhoughitisn’tours.IhaveenteredroomsIjusthavetogetoutof.Theatmosphereissoloadedwithsorrow.It’slikeaphysicalsensation.Thegriefjusthitsyoulikeawall!Howdoyoudealwiththat?(paperIp.5)

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Icanbecomeveryoverwhelmedwhenpatientssharetheirinnermostthoughtsandfeelingsaboutlifeanddeath!Italmostknocksmeoutsometimes!(paperIIp.7)Theiremotionalanguishcanbesostrong.It’softenworsethanthephysicalpain!It’sliketheirheartsarebeingtornout!Howdoyourelievethatkindofpain?(paperIp.3)Youbecomequitefondofthepatients!Sometimestheyjustleapintoyourheart!(paperIp.6)

AccordingtoBenner&Wrubel(1989),citedinRaingruber&Kent(2003),bodily

responsesarestrongerwhenoneisdeeplyinvolvedwithandconcernedabouta

situation.Furthermore,Benner(2000a)pointsoutthattheempiricalresearchof

cognitivescientistsandneurobiologists(Damasio,1999;Lakoff&Johnson,1999;Rosch,

1981)revealsthatemotionsandembodiedfeelings,sensori-motorperceptionsand

skillsshaperationalthoughtandknowingandthatthesocial,sentient,sensori-motor

bodyplaysakeyroleinthoughtandaction.Hence,whenanursefeelsthatherpatientis

sufferingsomuchthat“itseemslikehisheartisbeingtornout”(paperIp.3)”andshe

becomessofondofthepatientthathe“leapsrightintoherheart”(paperIp.6)itseems

reasonablethatthepatients’painwillresonateinthenurse’s“ownheart”.Thiswas

especiallythecasewhenthenursescaredforpatientswhoremindedthemof

themselves:“Oneofmypatientshadalittlebaby.ThatwasreallytoughbecauseIama

mothermyself!”(paperIIp.7).

10.2.1Vulnerabilityandembodiedengagement

AfterabriefreturntoKariMartinsen’scaringphilosophy(Martinsen,2000,2006),

thenurses’physicalreactionstotheirpatients’sufferingwillbediscussedinlightof

Merleau-Ponty’s(1962)conceptofembodiedengagement.Asmentionedinsection

10.1.6,Martinsen(2000,2006)pointsoutthatinordertorespondtotheethicalappeal

fromthepatientthenursemustdareto“seewithherheart’seye”.Thisimpliesthatthe

nurseiswillingtotakeinthepatient’ssufferingthroughheropenandreceptiveeyes

andthatthiscompelshertoalleviatethepatients’suffering.Martinsen(2000,2006)

pointsoutthatfortheSamaritan,thebodilypainofthewaylaidmanstruckhimclose,

withoutdistance:“TheSamaritansawwithhisheart’seye,withhiswholebodywhich

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waspainfullyopenandreceptive,turnedtowardstheother,attentivelytryingto

understandwiththoughtandwillaswell,whatisatstake”(Martinsen,2006,p.86).

AccordingtoMartinsen(2006,p.89):

Theopennessofperceptioncanbeterrifying.IntheeyesoftheSamaritanthepainoftheotherstruckintohisbody.Hestoodreceptiveandopenbutdidnotknowwhathewaslookingfor.Heonlyfeltit,thatthepainoftheotherconcernedhim.

BoththeSamaritan’sandthenurses’physicalreactionswhichstemmedfrom“seeingthe

sufferer”throughtheir“heart’seye”(Martinsen,2006)canbeunderstoodinlightof

Merleau-Ponty’s(1962)conceptofembodiedengagement.

Merleau-Ponty(1962),citedinRay(2006),conceptualizedthebodyascatching,

comprehendingandspontaneouslyrespondingtothecommunicationsofanother

person,whichhedefinedasembodiedengagement.AccordingtoMerleau-Ponty(1962),

citedinRay(2006),embodimentreflectshowweliveinandexperiencetheworld

throughourbodies,especiallythroughperception,emotion,language,movementin

space,timeandsexuality.Merleau-Ponty(1962),citedinRay(2006),maintainsthat

existencecanonlybeknowninandthroughthebodybecausethephenomenalbodyis

theonlymeansofbeingintheworld.Inthenursingcontextillness,pain,anddisability

areessentiallyconstitutedasembodiedexperiences(McDonald&McIntyre,2001).

Hence,tobeengagedwiththepatient,thenursemustbeengagedwiththepatient’s

existential,subjectiveandembodiedbeing:“Itisthepatient’sbodyasbothobjectand

subjectthatcallsoutforourministerings”(Hess,2003,p.145).

DrawingonLøgstrup(1997),Merleau-Ponty,Dreyfus,andDreyfus(1964)and

Martinsen(1997),Benner(2000a),maintainsthatgoodnursingpracticereliesonthe

humanbackdropofembodimentandourembodiedcapacitiestoexperience“the

spontaneoussovereignexpressionsoflife”(Løgstrup,1997),whichincludetrust,mercy,

opennessofspeech,andourcommonhumanconditionoffinitude,dependencyand

interdependence.InlightofLøgstrup(1997),she(2000a)alsopointsoutthatitisthe

immediateexperienceofembodiment,whichenablesthenursetorespond

spontaneouslywithmercy,withnoadditionalthoughtorcalculation.Nevertheless,

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bearingwitnesstosufferingcanbeagonizing.AccordingtoMalone(2000),witnessing,-

orinMartinsen’s(2000,2006)termsseeingwith“theheart’seye”isqualitatively

distinctfrommerelooking;witnessingengagesthenurseasabeareroftruththatthe

sufferingpersoncannottell.Malone(2000)maintainsthatthisaspectofnursing

practiceislargelyunacknowledged,andthatthevulnerabilityitrequiresnursesto

experienceisrarelyaddressed.Twonotionsofvulnerabilitydominateinthenursing

literatureaccordingtoMalone(2000).One,whichmightbecalledapublichealthmodel

ofvulnerability,equatesvulnerabilitytothesusceptibilitytoparticularharmfulagents,

conditionsorcircumstances.Assuch,vulnerabilityissomethingtobeavoidedor

resisted.Theotherviewregardsvulnerabilityasthecommonconditionofallsentient

beings.Accordingtothisperspective,vulnerabilityisaconstantconditionofhuman

experience,acommonalitythatwesharebyvirtueofourembodiedexistenceandour

finitude.Assuchvulnerabilitygivesaccesstounderstandingaspectsofthepatients’

experiencesandisregardedpositively(Malone,2000).

Acknowledgingtheirownaswellastheirpatients’vulnerability,sharpensthenurses’

sensitivity,whichenablesthemtoopenthemselvestotheirpatient’ssituation(Norberg,

2001;Sarvimäki&Stenbock-Hult,2014).Asembodiedandvulnerablebeings,nurses

canexperiencetheirpatients’worldandengageintheillpersons’embodiedexperience

(Hess,2003).Thisenablesnursestounderstandmorethanwhatisbeingsaidand

observed,becausetheirimpressionofthepatients’conditionmanifestsitselfas

embodiedsensationsandphysicalresponsesbeforethenursescanunderstandthese

impressionsintellectually(Martinsen,2000,2006;Raingruber&Kent,2003).

10.2.2Compassionfatigue

Researchshowsthatbeingdeeplyengagedinpatients’sufferingoverprolongedperiods

oftimeexposeshealthcareproviderstovariousformsforoccupationalstress.(Backet

al.,2009;Hardiman&Simmonds,2013;Sabo,2008,2011a,2011b;Sandgren,Thulesius,

Fridlund,&Petersson,2006;Smartetal.,2014).Theconceptsofcompassionfatigue,

vicarioustraumatization,secondarytraumaticstressandburnouthavebeencompared

andusedinterchangeablywithintheliterature.Althoughtheseconcepts,have

73

significantsimilaritiestheyalsohavesignificantdifferences(Najjaretal.,2009;Smartet

al.,2014).

Forthepurposeofthisstudyitwillsufficetodiscusstheresultsinlightoftheconceptof

compassionfatiguewhichhasreceivedconsiderableattentionasapotentialformfor

occupationalstressduringrecentyears(Sabo,2011a).Compassionfatiguehasbeen

describedas“thenaturalconsequentbehaviorsandemotionsresultingfromknowing

aboutatraumatizingeventexperiencedbyasignificantother–theresultfromhelping

orwantingtohelpatraumatizedorsufferingperson”(Figley,1995,p.7),citedinSabo

(2011a).

AccordingtoSabo(2011a),severalstudiessuggestthatcompassionfatigueisconnected

tothetherapeuticrelationshipbetweenhealthcareprovidersandpatients,inthatthe

traumaticorsufferingexperienceofthepatienttriggersaresponseonmultiplelevelsin

thehealthcareprovider.Inparticular,anindividual’scapacityforempathyandabilityto

engage,orenterintoatherapeuticrelationshipisconsideredtobecentralto

compassionfatigue.Providingassistancetoindividualsexperiencingpain,sufferingor

trauma,theprofessionalmayexperienceadverseeffectssimilartotheirclients.

CoetzeeandKlopper(2010)claimthatcompassionfatigueisthefinalresultofa

progressiveandcumulativeprocess,whichiscausedbyprolonged,continuous,and

intensecontactwithpatients,theuseoftheselfandexposuretostress.Thephysical

effectsofcompassionfatigueincludeweariness,lossofstrength,reducedoutput,

diminishedperformance,lossofenduranceandincreasedphysicalcomplaint.The

emotionaleffectsincludelessenedenthusiasm,desensitization,diminishedability,

irritabilityandbeingemotionallyoverwhelmed.Thesocialeffectsincludeaninabilityto

aidandshareinthesufferingofpatients.Compassionfatigueissaidtooccurwhen

healthcareproviderscloselyidentifywiththeirpatientsandpersonallyabsorbthe

patients’traumaorpain.Itresultsfromgivinghighlevelsofenergyandcompassion

overaprolongedperiodoftime,particularlywhennursesdonotexperiencethepositive

outcomesofseeingpatientsgetbetter(Najjaretal.,2009).Inlightoftheafore-cited

literature,itseemsreasonablethatthenurseswereatriskofdevelopingcompassion

fatiguebecauseoftheirdeeprelationshipswithpatients,andtheiremotionaland

embodiedreactionstotheirpatients’suffering.

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However,Sabo’s(2011a)studyoftheHSCTnurses’psychosocialhealth,foundthat

compassionatepresencingandinvolvementinthenurse-patientrelationshipmay

actuallyprovideapotentialbufferingagainsttheadverseeffectsofcaringforthe

seriouslyillanddying,whereasdistancingordisengagementthroughemotionalsurvival

strategiessuchasemotionalshielding,emotionalprocessingandemotionalpostponing

(Sandgrenetal.,2006)mayincreasetheriskofexperiencingcompassionfatigueand

othertypesofoccupationalstress.

AccordingtoSabo(2011a),thereexistsasignificantdifferencebetween“compassionate

presencing”and“emotionalsurvivalstrategies”.Wherecompassionatepresencereflects

thenotionof:“beingwith”,-alivingoutofthecaringnatureofnursingthrough

connectionsandrelationships,emotionalsurvivalgenerallyattendstostrategiesor

methodstoaddressaproblem,“inessenceto“avoidbeingwith”(Sabo,2011a,p.109).

Sabo(2011a)maintainsthatcompassionatepresenceconveysapositivetone,where

connectionorrelationshipscarrybenefits,whileemotionalsurvival(Sandgrenetal.,

2006),suggeststhatcaringmayleadtonegativeeffects,whichnursesmaypostponeby

employingvariousavoidancestrategies.However,Sabo(2011a)doesnotclaimthatthe

potentialriskforpsychological/emotionalpainasaresultofcaringrelationshipsis

non-existentifoneis“compassionatelypresent”rathershepointsoutthatcaringshould

beperceivedasadouble-edgedswordandthatthepotentialforadversepsychosocial

effectssuchascompassionfatiguemaybereducedifnursesareabletobe

compassionatelypresent.AccordingtoSabo’s(2011a)study,theHSCTnursesneededto

remainvigilantaboutwhosepainandsufferingwasbeingshared.Afailuretoestablish

clearboundariesbetweenthepersonalandprofessionalcouldplacethenurseatriskfor

adverseeffects.Sabo’s(2011a)resultsareconsistentwiththeresultsinthisthesis,

whichshowthatthenursesstrovetostrikeabalancebetweendisengagingandover-

engagingintheirpatients’suffering.Thisaspecthasbeenthoroughlydiscussedinpaper

IIp.10.

Sabo(2011a)pointsoutthat“compassionatepresence”isawayofbeingand

connecting,whichrequiresthenursetobeauthentic/genuine,openandavailableto

shareintheethical-moralmomentsoftheirpatientsandfamilies.Compassionate

presenceisareflectionofholisticnursingpracticeembracingthephysical,

75

psychological,emotionalandspiritualdomains.Thisbearscloseresemblancetothe

nurses’emphasisonsharingtheirpatients’sufferingthroughconsolingpresenceand

relationshipmaintainingactivities(paperIp.3-5andpaperIIp.6-7).

10.2.3Compassionsatisfaction

CoetzeeandKlopper’s(2010)distinctionbetween“compassionfatigue”and“compassion

satisfaction”supportsSabo’s(2011a)study.CoetzeeandKlopper(2010)pointoutthat

althoughnursesareexposedtotheexactsameriskfactorsofcontact,useoftheselfand

stress,somenursescontinuetoflourishinthesecircumstances.AccordingtoCoetzee

andKlopper(2010)nurseswhoexperiencecompassionsatisfactionareabletoconnect

withtheirpatientsregardlessofthecircumstances,whichleadstomeaningfuland

purposefulinteractionsbetweennursesandtheirpatients,whilstnurseswho

experiencecompassionfatigue,graduallydistanceandisolatethemselvesfromtheir

patients,whichresultsinthefactthatneitherthenurses’northepatient’sneedsare

fulfilled.

Sabo(2011a)andCoetzeeandKlopper‘s(2010)studiessuggestthatbeingdeeply

involvedinthenurse-patientrelationshipmayprovidemoreprotectionagainst

compassionfatiguethanusingemotionalsurvivalstrategies(Sandgrenetal.,2006)to

avoidthepainfulimpactofwitnessingdyingpatients’suffering.Whiletheprocessof

compassionfatigueiscumulativeandprogressive,movingfromdiscomforttostressand

finallytofatigue,theprocessofcompassionsatisfactionisrestorativeandcircular,

presentingasymbioticrelationshipbetweenthepatientandthenurse,aseachfinds

fulfillmentintheother(Coetzee&Klopper,2010).ItisinterestingtonotethatCoetzee

andKlopper’s(2010)definitionofcompassionsatisfactionresonateswithNorberget

al.’s(2001)claimthatnursesandpatientsmayexperiencemutualconsolationthrough

communionanddialog.

Whiletheresultsinthisstudyshowthatbearingwitnessto“unconsolable”patients’

sufferingcouldbeemotionallydrainingandchallenging(paperIIp.7),theyalsoreveal

thatthenursesfeltthatconveyingconsolationcouldbedeeplymeaningfuland

rewarding(paperIp.6,paperIIp.7).Bearingwitnesstoapatient’speacefulpassing

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filledthemwithreverenceandawe:“Theroomwasveryquietandthepatientdied

calmlyandpeacefully.Itwasaveryspecialmoment”(paperIIp.7),andthenurses

expressedthattheyfelt“honoredandtouched”whenthepatientssharedtheirtrustand

chosetoconfideinthem(paperIIp.7).

InlightofSabo’s(2011a)andCoetzeeandKlopper’s(2010)studies,itisinterestingto

notethatnoneofthenursesmentionedthattheyhadconsideredchangingtheirlineof

workortakingaleaveofabsence,althoughtheycouldfeelemotionallydrainedand

helplesswhentheywereunabletoconsoletheirpatients.Takingthisintoconsideration

andthefactthatthenurses’workingexperienceinend-of-life-carerangedfromfiveto

thirty-fiveyears,itseemsreasonabletoassumethatthenursesexperiencedsufficient

compassionsatisfactionthroughtheirrelationshipswiththedyingthatitcounter-

balancedpossibleadverseeffectsofcompassionfatigue.Theseresults,togetherwiththe

aforementionedstudiesunderscorethevalueoftherelationaldimensioninconsolation

work(paperIp.3-5andpaperIIp.6-7).

10.3CompassionandCourage

10.3.1Compassion

AccordingtoRushtonetal.,(2013)compassionoptimallyinvolvesaqualityofpresence

thatconveysstabilityandresiliencewithabalancedconcernandheartfeltconnection,

butisnotdepletingoroverwhelmingtoeitherperson.Lazarus(1991)pointsoutthat

compassionimpliesfeelingpersonaldistressatthesufferingofanotherandwantingto

ameliorateit:“Thecorerelationalthemeforcompassion,therefore,isbeingmovedby

another’ssufferingandwantingtohelp”(Lazarus,1991,p.289).Thisresonateswiththe

results,whichshowthatthenursesweredeeplymovedandtouchedbytheirpatients

andyearnedtoconsolethem(paperIp.6,paperIIp.7).However,theresultsalso

indicatethatthenursesinpaperIandII,aswellasthecareworkersinpaperIII,could

beambivalentandreluctanttoaddresstheirpatients’spiritualandexistentialanguish

becauseitconfrontedthemwiththeirownvulnerabilityandlatentfearsofsufferingand

death(paperIp.7,paperIIp.8,paperIIIp.4-5).

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ThesereactionsareunderstandableaccordingtoSasserandPuchalski(2010,p.3).They

(2010)pointoutthatcaringfordyingpatientsoverthecourseoftheirillnesstrajectory

exposeshealthcareproviderstogut-wrenchingstoriesofhumantragedy,whichovera

periodoftimemayevokeacertainamountof“accompaniphobia”thatmayleadto

avoidancestrategies(Sandgrenetal.,2006).AccordingtoSasserandPuchalski(2010)

thetendencytoavoidaddressingpatients’sufferingmaystemfromapossible

resonancewithunhealedwoundsdeepwithinthehealthcareproviders’ownsoulsthat

needsfurtherworkontheirpart.Thissuggeststhatnursesandcareworkersmust

possesscourageaswellascompassioninordertosuspendtheirpersonalreluctance

andanxietynomatterhowdisquietingthismightbeinordertoaccompanythedying

wheretheywanttogo,whentheywanttogothere,andwhetherthenursesandcare

workerswanttoornot(Sasser&Puchalski,2010).Takingthisintoconsideration,itis

interestingtonotethatthewordcompassionisderivedfromtheLatin“pati”and“cum”

whichliterallymeans,“tosufferwith”(Nouwen,McNeill,&Morrison,2008).Nouwen

et.al.(2008)pointoutthat:

Compassionasksustogowhereithurts,toenterintoplacesofpain,toshareinbrokenness,fear,confusionandanguish.Compassionchallengesustocryoutwiththoseinmisery,tomournwiththosewhoarelonely,toweepwiththoseintears.Compassionrequiresustobeweakwiththeweak,vulnerablewiththevulnerable,andpowerlesswiththepowerless.Compassionmeansfullimmersionintheconditionofbeinghuman.Whenwelookatcompassioninthisway,itbecomesclearthatsomethingmoreisinvolvedthanageneralkindnessortenderheartedness.(Nouwenetal.,2008,pp.3-4)

Nouwenetal.’s(2008)descriptionof“thechallengeofcompassion”resonatesdeeply

withthenurses’andcareworkers’challengesrelatedtoconveyingconsolation.While

Nouwenetal.(2008,p.4)statethat“Compassionmeansfullimmersioninthecondition

ofbeinghuman”,Norbergetal.(2001,p.549)maintainthatconsolationinvolvesbeing

willingto“sinkintosomebodyelse’shellandstaythere”.Beingincommunionwith

patientsinordertosharetheirsuffering(Norbergetal.,2001),-orinNouwenetal.’s

(2008)words:“goingwhereithurts”,demandsopenness,presenceandavailability,

whichcreatestrust.Whentherelationshipistrusting,thereisroomtouncoverthe

wound(thecauseofthesuffering),whichcalmsthesufferingpatientwhodarestolook

athisorherwounds,whilethenursewhomediatesconsolationby“walkingalongside”

showsthepatientthathisorherweakness,griefandexpressionsofpainareaccepted.

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Intheshortperspective“uncoveringthewound”mayincreasethepainbecausethe

woundbecomesobvious,exposing“allthatisraggedandbroken”(Norbergetal.,2001,

p.548).

Uncertainty

Theresultsshowthatthenursesandcareworkersoftenfeltuncertainabouttheright

andbestthingtosayordotoalleviatetheirpatients’spiritualandexistentialsuffering.

Althoughinthefirstconsolationnarrative(“Breakingtheboil”paperIp.4)thenurse

thoughtthatsomepatientscould“needalittlepush”tohelpthemtranscenda

depressivespiralofexistentiallonelinessandalienation,thenursesexpressedthat

strikingtherightbalancebetweenmildpersuasionandacceptingthepatients’choices

to“bottleuptheirsuffering”couldbedifficult.Choosingtherightapproachwasfraught

withuncertainty,especiallyrelatedtoethicaldilemmasconcerningthepatients’

vulnerability,autonomyandtheasymmetricalpowerstructureinthenurse-patient

relationship.Thenursesexpressedthattheycouldneverbecertainaboutmakingthe

rightchoiceduetounpredictablechangesinthepatients’condition,andtheycouldalso

beuncertainabouthowtheirpatientsmightreacttowardstheirattemptstoconsole

them.Asthenursespointedout:“Eachpatientisdifferentandtherearenoeasy

answers.”(paperIp.4)

10.3.2Courage

Theseresultsindicatethattoconveyconsolationnursesandcareworkersmustbe

willingtoexposethemselvestotheirownaswellastheirpatients’vulnerability,to

accompanytheirpatientsintotheexperienceofuncertainty,andtogiveupcontroland

self-determination.Thisdemandscouragebecauseawindowisopenedtotheunknown

(Thorup,Rundqvist,Roberts,&Delmar,2012).Jordan(2003)definescourageas“the

capacitytoactmeaningfullyandwithintegrityinthefaceofacknowledgedvulnerability

“(Jordan,2003,p.2).AccordingtoJordan(2003),courageandvulnerabilityare

inextricablelinkedtogetherandtherecanbenorealcouragewherevulnerabilityand

feararedenied.Drawingonafeministperspective,Jordan(2003)pointsoutthatthe

traditionalmaleEurocentricmythofthecourageous,loneindividualwhodefies

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vulnerabilityandfearobscuresthefactthatweallneedencouragementandconnection

throughoutourentirelives,andthathavingthecouragetomovebeyondcertaintyand

invulnerabilityenablesustoentertheworldoflearning,curiosityandlove.From

Jordan’s(2003)pointofview,courageisbuiltthroughvulnerabilityandconnectivity,

whereone’sopennesstobeingaffectedisessentialforconnection.Withoutopenness

peoplerelateinauthentically,adoptingrolesandcomingfromdistancedandprotected

places,whereaswhenwehavethecouragetobevulnerable,wearecapableofbeing

“moved”byourinternalaffectiveexperienceaswellasbeingaffectedbyotherpeople

(Jordan,2003),whichenablesustoexperiencecompassionforthesufferingofothers

(Lazarus,1991).Jordan’s(2003)understandingofcourageresonateswithLøgstrup’s

viewsontheinterdependentnatureofhumanexistenceandtheethicaldemand“totake

careofthelifewhichtrusthasplacedinourhands”(Løgstrup,1997,p.18),as

mentionedinsection10.1.6.AccordingtoDelmar(2004),citedinThorupetal.(2012),

enteringintoseriouspatientrelationshipsdemandscourage,becauseitrequiresa

willingnessfromthenursetoruntheriskofrejection.InlinewithNouwenetal.(2008)

andNorbergetal.(2001),Thorupetal.(2012)pointoutthattheoreticalandempirical

studiesshowthatthenurses’couragelaysinhisorherwillingnesstowalkalongsidethe

patientsontheirjourneytoovercometheirsuffering,nomatterwheretheroadleads.

Thisjourneyishighlyunpredictableandseemstorequirethewillingnessandabilityto

bearwitnesstothepatients’vulnerabilityandsuffering(Thorupetal.,2012).

Thorupetal.’sresearch(2012)revealsthatcouragebecomesevidentinsituations

wherenursesarecapableofcopinginanindeterminatesituation,ofstandingout“inthe

open”ofengagingwithandlisteningtovulnerableandsufferingpatients,insituations

thatexposethemtotheriskofrejection.Couragemanifestsitselfastheabilityand

willingnesstohelppatientstofacetheirownvulnerabilityandsuffering,tobearwitness

topatients’vulnerabilityandsufferingandtohavetheself-confidencetoargueforand

provideforprofessionalcare(Thorupetal.,2012).Thorupetal.’s(2012)work

resonateswiththisstudy,whichshowsthatthenursesandcareworkersneeded

couragetoovercometheirfearandemotionalambivalencetoconsolethedying,because

thisexposedthemtotheirownfearsofmortality,vulnerabilityandprofessional

helplessness.Aspreviouslymentionedcouragewasespeciallyneededinorderto

endurebeingwiththe“unconsolable”patients.(paperIIp.7)

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AccordingtoThorupetal.(2012),courageisaprerequisiteinnerqualityandafirststep

towardstheexistentialcaringencounter.Thissupportsthestudyresults,whichshow

thathavingthecouragetoovercometheirfearsandreluctancetobewiththedyingwas

aprerequisiteforthenurses’willingnesstoengageincompassionateandconsoling

relationshipswiththeirpatients.Thorupetal.(2012)pointoutthatonthisexistential

level,infacingtheunpredictable,couragecontributestothenurturanceofpersonaland

professionaldevelopment.InlightofThorupetal.’s(2012)study,itisinterestingto

notethatthenursesinpaperIIexperiencedthattheiroldercolleaguesseemedtobe

morewillingtoengagethemselvesinthepatients’spiritualandexistentialsuffering

thantheyoungernurses,andtheyassumedthiswasbecausetheoldernurses’personal

andprofessionallifeexperienceshadmadethemmorematureandrobusttobearthe

weightofthepatients’distressthantheiryoungercolleagues(paperIIp.12).

(Seesection10.4.1,table1)

10.4Cancourageandcompassionbetaught?Thisstudyindicatesthatconsolingthesufferinganddyingisadeeplyrelationaland

compassionateactivity,whichrestsonnurses’andcareworkers’couragetoovercome

theirfearandreluctancetoaddresstheirdyingpatients’spiritualandexistential

distress.Thisraisesimportantpedagogicalquestionsabouthowtoteachandtrain

nursesandcareworkerstoconveyconsolation:

- Cancompassionandcouragebetaught?

- Whatarethepedagogicalimplicationsforteachingandtrainingnursesandcare

workerstoconveyconsolation?

Theseissueswillbediscussedinthefollowing:

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10.4.1Cancompassionbetaught?Halifax(2012)pointsoutthatthefactorswhichfostercompassionarenotwell

understood.Accordingtoher(2012),whethercompassionisaninherentpersonal

quality,orifitcanbetaughtandlearnedisacentralquestionintheemergingfieldof

compassionresearch(Halifax,2012,2014;Sinclairetal.,2016;StanfordUniversity

SchoolofMedicine,2008).Theanswertothisquestionisimportantbecauseithas

pedagogicalimplicationsforteachingandtrainingcurrentandfuturenursesandcare

workerstoconveyconsolation.

Whiletheconventionaldescriptionofcompassionisbasedontwomaincomponents

fromtheaffectivedomain:theaffectivefeelingofcaringforthesuffererandthe

motivationtorelievesuffering(Lazarus,1991),Halifax(2012,2014)drawingonrecent

neuroscienceresearch,describescompassionasacontingentandemergentprocess,

whicharisesoutoftheinteractionbetweenanumberofinterdependentnon-

compassionelements,whichbelongtothecognitiveandbehavioraldomainsaswellas

theaffectivedomains.AccordingtoHalifax(2012,2014),thesenon-compassion

elements,(whichincludeattentionandaffect(theaffectivedomain),intentionand

insight(thecognitivedomain)andembodimentandengagement(thebehavioral

domain)),interactwitheachotherinacomplexandadaptivesystem.Asaconsequence,

onecannotdirectlytrainincompassionperse,accordingtoHalifax(2012,2014).

However,Halifax(2012,2014)pointsoutthatonecanindirectlysetthefieldforthe

emergenceofcompassionbytrainingtheindividualinsituationsandprocesseswhich

arerelatedtothenon-compassionelementsintheaffective,cognitiveandbehavioral

domains.Theconsolationprocesswhichemergedthroughthestudy,bearsclose

resemblancetothecontingentandemergentprocessbetweentheaffective,cognitive

andbehavioralnon-compassionelementswhicharedescribedinHalifax’s(2012)model

ofenactivecompassion.Assuch,conveyingconsolingcanbeunderstoodasaformfor

enactivecompassion(Halifax,2012).Thisisillustratedinfigure1:

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Figure1: Conveying consolation through “enactive compassion” based on Halifax (2012)

AccordingtoHalifax’sresearch(2012,2014),itispossibletoindirectlyprimenurses’

andcareworkers’capacityforcompassionbydesigningteachingandtrainingschemes,

aimedatdevelopingnursingcompetencies,whichpertaintothetrainablenon-

compassionelements.Thefollowingtableprovidesasummaryoftheconsolation

challengesandcompetencies,whichwereidentifiedinthethreepapersandtheir

relationshiptoHalifax’s(2012,2014)“non-compassionelements”.

BehavioraldomainConsolingactions:

Respondingappropriatelytopatient'sverbalandnonverbalcues

Consolingthroughpresence,sharedsilenceandphysicaltouch

Consolingthroughspiritual,existentialandreligiousconversations

Alternatingskillfullybetweentalkinglisteningandbeingsilent

Cognitivdomain:Clinicaljudgementand

reflection-assesspatients'needstodecideonthebestcourseofactionandevaluate

outcomes

Affectivedomain:Sensningpatients'suffering

Embodiedreactionstopatients'suffering

Emotionalambivalencetoengageinpatients'sufferingMusteringcouragetobeopen

tothepatients'suffering

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Table 1. Overview of the nurses’ consolation challenges and competencies Non-compassionelements(Halifax2012,2014)

Consolationchallenges Competenciesneededtoprovideconsolationthrough“enactivecompassion”(Halifax2012,2014)

AffectiveDomainAttentionandaffect

Emotionalchallenges:- Painfulembodiedreactionsto

patients’suffering

- Fearofdeathanddying- Vulnerabilityandhelplessness- Experiencingreluctanceand

ambivalencetosharethepatients’suffering

Couragetoovercomeemotionalchallengesinordertoremainopenandreceptivetothepatients’sufferingCouragetoengageinconsolingactions

- Personalandprofessional

maturityandexperience

- Self-awareness

CognitiveDomainIntentionandinsight

Overcominguncertainty:- Beinguncertainaboutthe

patients’spiritualandexistentialsufferingandneeds

- Beinguncertainaboutthebestcourseofaction

- Beinguncertainabout

addressingdyingpatients’religiousissues

- Risktaking

Clinicaljudgmentandreflection- Assessingpatients’spiritual

andexistentialsufferingandneeds

- Decidingonthebestcourseofaction

- Evaluatingtheoutcomes

BehavioralDomain:Embodimentandengagement

Providingappropriateresponsestopatients’verbalandnonverbalcues:

- Usingnaturalopeningsto

integrateconsolationwhilstperformingnursingcare

- Adoptingbehaviortomatchfluctuationsinthepatients’physical,psycho-socialandspiritual/existentialsuffering

Relationalandpresencingskills:- Beingwiththedying:

Consolingthroughsilentpresencingandphysicaltouch

- Engaginginspiritual,existentialand/orreligiousconversations

- Alternatingskillfullybetweentalking,listeningandsharingthesilence

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10.4.2Cancouragebetaught?

Asmentionedinsection10.3.2Jordan(2003)describescourageastheabilitytobe

movedandaffectedbyothersandtoembraceandacceptvulnerabilityanduncertainty.

Thisposesanimportantpedagogicalquestion:Isitpossibletoteachandtrainnurses

andcareworkerstoovercometheirfearsandreluctancetowalkwiththedyingtoshare

theirsuffering(Norbergetal.,2001)?

WhileThorupetal.(2012)foundthatcourageisaprerequisiteinnerquality,which

contributestothenurturanceofpersonalandprofessionaldevelopment;theyalsopoint

outthatcourageisnotonlyanisolatedandinherentquality,becauseaspectsofvolition

arealsoinvolvedinnurses’courageousactions.Takingthisintoconsideration,itseems

reasonablethatthevolitionalaspectsofcouragemaybedeveloped.Thissuggeststhatit

ispossibletotrainone’sabilitytoactcourageously.Inthefollowingthiswillbe

discussedinlightofGoud’s(2005)studyconcerningthenatureanddevelopmentof

courage.Drawingonseveralpsychologicalschoolsandtheorists,whichemphasizethat

allorganicandhumanlifehasaninnatedrivetowardsgrowthandself-actualization

(Horney,1950;Jung&VonFranz,1968;Maslow,1968,1972;Maslow,Frager,Fadiman,

McReynolds,&Cox,1970;Rogers,1961,1980).Goud(2005,p.102)definescourageas

the“energizingcatalystforchoosinggrowthoversafetyneeds”.AccordingtoGould

(2005)agapiscreatedwhenevergrowthforcesencounterpowerfulsafetyforces

(fears)andthisgapmustbeleapedinorderforgrowthtoproceed.Gould(2005)points

outthatcourageallowsonetoeffectivelyactunderconditionsofdanger,fear,andrisk.

Withoutcourage,theindividualorgroupremainsstuckinexistingpatternsor

immobilizedinfear.

Inordertopresentaconceptualmodelofcourageandtodescribeguidelinesfor

developingcourageGoud(2005)examinedavarietyofdisciplinesfortheirviewson

courage.Thedisciplinesspannedfrommilitaryhistoryandresearch,variousschoolsof

psychology,literatureandphilosophy.Gould(2005)performedacontentanalysisofthe

divergentsourcesofliterature,whichyieldedthreeprimarydimensionsofcourage,

whichincluded:fear,appropriateactionandahigherpurpose.Gould(2005)foundthat

whiletherearewidevariationsamongstudentsofcourageastothekindsoffears,

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whichinvolvecourage,allseemtoagree,thatfacingfearsisessentialinacourageous

act.However,inlightofAristotle,Gould(2005)maintainsthatactinginthefaceoffear

isnotenough.Onemusthaveahigherpurposeforacourageousact.Drawingon

Nietzsche,Goud(2005)statesthatthelevelofcommitmenttoacourageousactis

directlyrelatedtoafeltsenseofpurpose.AccordingtoGoud(2005)ahigherpurpose

referstoaffirmingorsecuringavaluebeyondone’sself-interests.Assuch,thenurses’

deeprelationalconnectionwiththeirdyingpatientsandtheirmoralresponsibilityto

consolethem(paperIandII)canbecharacterizedasacourageoushigherpurpose.

(Conveyingconsolationasamoralresponsibilityhasbeendiscussedinsection10.1.6)

Figure 2: Goud’s (2005) three-dimensional model of courage applied to the study

HIGHERPURPOSE:Amoralresponsibilitytoalleviatedying

patients'spiritualandexistentialsuffering

OVERCOMINGFEARS:Embracingand

acceptingvullnerability,

mortality,professionalhelplessnessand

uncertainty

COURAGEAPPROPRIATEACTIONS:Conveyingconsolation

86

Asmentionedearlier,althoughstudies(Halifax,2012,2014;Thorupetal.,2012)

indicatethat,compassionandcourageseemtobeinherentpersonalqualities,these

studiesalsoindicatethatitmaybepossibletocultivatethesequalitiesthroughtraining.

Goud’s(2005)studywhich,drawsonRachman’sresearch(1978)supportsthese

results.AccordingtoRachman(1978),citedinGoud(2005),trainingindangerousjobs

suchasfirefighting,emphasizesgradualandgraduatedpracticeofthedangeroustasks.

Rachman(1978)concludedthat:“Courageousbehaviorisdeterminedpredominantlyby

thecombinationofcompetenceandconfidence,andbothofthesequalitiesare

strengthenedbyrepeatedandsuccessfulpractice.”(Rachman,1978,p.248),citedin

Goud(2005,p.111).Assuch,practicingforcourageisaprocessofmoral,psychological,

andphysical“toughening”accordingtoGoud(2005).Henceforth,“doingtherightthing”

inthefaceoffeardemandsagoodamountofconfidence,fortitudeanddiscipline.

Accordingly,developingtheabilitytotoleraterisksanduncertainty,meansaccepting

fearandanxietyaspartofthisprocess,ratherthansomethingtobeavoided(Goud,

2005).

DrawingonRachman(1978),Gould(2005)statesthatdevelopingconfidenceandself-

efficacy,observingrolemodelsandbolsteringasenseofpurposearepotentforcesfor

developingcourageandcounteractingfears.Developingconfidenceinone’scapabilities

isaprimaryforceincounteringfears,risksandthesafetyimpulse,whereself-efficacy,

whichisaspecificformofself-confidence,isofspecialimport.Self-efficacyisan

estimateofone’scapabilitiestohandlespecificchallengesandtasks.AccordingtoGoud

(2005)self-efficacyisanimportantdeterminantofhowmucheffortpeoplewillexert

andhowlongtheywillpersevereinthefaceofsignificantchallenges.Inlightof

Rachman’s(1978)summaryofstudiesaboutfearandcourage,Goud(2005)

recommendsrisktakingandcomfortzoneexpansionasameansforcourage

development.Theideaistoengagethelearneringradualrisktakingactivities,which

arejustbeyondtheindividual’scomfortzone(inthesamewayaparentcoaxesatoddler

totakeafewsteps).Attemptingtaskstoofarbeyondone’scapabilitiesusuallyresultsin

overwhelmingfailureandfears.Thefearfulpersonwillthen,quitereasonablyretreatto

safetyandbeextremelyhesitanttoriskanynewbehaviors.

87

Inadditiontofacilitatingcouragebuildingopportunitiesthroughactivities,which

involvegradualriskexposure,Goud(2005)recommendsobservationallearningor

modelingasanotherpowerfulmodalitytodevelopcourage.DrawingonBandura

(1986),Goud(2005)statesthatwatchingsomeonesimilartooneselfsucceedinatask

tendstoincreaseone’sconfidenceinperformingthesametasks(whilethereversalso

holdstrue).AccordingtoGoud(2005),beingexposedtodirectmodelsthat

demonstratecourageousbehaviorsincreasesthelikelihoodthatitwillencouragethe

samebehaviorsintheobserver.Goud’s(2005)researchsupportstheresultsinpaperIII

whichshowthatsituated,relationalandexperientialteachingapproachesintheclinical

contextseemtobeanefficientmeanstoteachandtraincareworkerstoprovide

spiritualandexistentialcareforthedying.Thiswillbeexplicatedinthefollowing:

ThemobilehospicenurseteachingteaminpaperIIIfrequentlyexperiencedthatthe

careworkersfeltfearfulandreluctantaboutaddressingtheirdyingpatients’spiritual

andexistentialsuffering.Theteachingteambelievedthatthecareworkers’fearof

exposingthemselvestotheirpatients’spiritualandexistentialsufferingstemmedfrom

personalinsecurityaswellasinsufficientcommunicationandlisteningskills(paperIII

p.5).Tostrengthenthecareworkers’courageandcompetency,themobileteaching

teamtransferredtheirpersonalspiritualandexistentialcareknowledgethrough

situatedbedsideteaching,whichinvolvedparticipatingactivelyinpatientcaretogether

withthecareworkers.Actingasrolemodelsandbyprovidingindividualsupervision

andfeedbackbefore,duringandafterpatientcare,theteamgraduallyencouragedthe

careworkerstoconductthespiritualandexistentialcareconversations,whichthey

wereafraidofinitiating.

Inthebeginning,theteammemberswouldactasrolemodels,(Goud,2005):“Sometimes

theyneedtohearthekindofquestionsIaskandseehowIrelatetothepatient.”(paper

IIIp.5)Theteachingteamgraduallyencouragedthecareworkerstostepoutoftheir

comfortzone(Goud,2005)toconductthepatientconversationsindependentlywhile

theteammemberwouldstayinthebackgroundtoprovidesupport.Astheteaching

teamobservedthatthecareworkersbecamemorecourageousandcompetent,they

graduallywithdrewtheirsupport,transferringtheresponsibilitytothecareworkers:

88

“Manyjustneedalittlepushandencouragementtotalkwiththepatientsalone,using

measaconversationpartnertohelpthemreflectonhowtheyhandledthesituation.”

(paperIIIp.5)Accordingtothemobilehospicenurseteachingteam,supervising,

supportingandencouragingthecareworkersthroughtheirchallengesoveraperiodof

timehadmadethemmorecourageoustobewiththedyingandtotalkwiththemabout

theirspiritualandexistentialsuffering.Drawingoncareworkerfeedbackandtheirown

observations,theteachingteamconsideredthatsituatedbedsideteachinghadprovento

beanimportanttool:”WhenIhaveaccompaniedthesamecareworkertothesame

patientsseveraltimesI’venoticedthattheyhavegraduallybecomebraverbecausethey

actuallydaretoasktheirpatientssomeofthedifficultquestions.”(paperIIIp.6)……”I

seethattheydaretoinvolvethemselvesmoreinthesesituations,exposingtheir

vulnerability.Iseethattheyhavebecomebraver.”(paperIIIp.6)

10.5Pedagogicalimplications

Asmentionedinsection10.4.1and10.4.2,studiesindicatethatitispossibletoprime

nurses’andcareworkers’courageandcompassiontoconveyconsolationthrough

training(Goud,2005;Halifax,2012,2014;Thorupetal.,2012)andthatthismight

increasetheirendurancetobewiththedying.(Seesection10.2.3)

Inthefollowing,thepedagogicalchallengesrelatedtoteachingandtrainingnursesand

careworkerstoconveyconsolationwillbediscussedinlightofeducationalnursing

research,whichdrawsontheAristotelianconceptofphronesis(Benner,1984,2000a,

2000b;Benner,Sutphen,Leonard,&Day,2010;Rowe&Broadie,2002)andsituated

learningtheory(Brown,Collins,&Duguid,1989;Gieselman,Stark,&Farruggia,2000;

Lave&Wenger,1991).

AccordingtoÖhlen(2001),Aristotleviewshumanactionasapracticalskillwhich

involvesthefollowingthreeknowledgeforms:episteme,(theoreticalorformal

knowledge),techne(hands-onskills)andphronesis(thepersonalabilitytotakeactionin

awiseandprudentmanner).Öhlen(2001)pointsoutthatallthreeknowledgeformsare

eachother’sprerequisites.Assuch,noneofthemaresufficientalone.Theabilitytoact

prudentlyandwiselytoalleviatesuffering(phronesis)presumestheoreticalknowledge

89

(episteme)aboutsufferingandalleviatingsufferingaswellashands-onnursingskills

(techne)toalleviatethatsufferingandviceversa(Öhlen,2001)

Thestudyrevealedthatconsolingthedyingwasacomplex,multidimensionaland

deeplypersonalandrelationalnursingchallengewhichdemandingclinicaljudgment

andreflectivepractice.Thisisillustratedinthethreepaperswhichshowthatthenurses

(paperIandII)andthehospicenurseteachingteam(paperIII)strovetointegrateand

mergedtheirtheoreticalandpracticalknowledgeintoaholisticefforttoconsoleand

easethespiritualandexistentialsufferingofthedying.(ThisisillustratedinFigure1

andTable1insection10.4.1.)

TheresultsshowthatboththenursesinpaperIandIIandthehospicenurseteaching

teaminpaperIII,demonstratedaformforspiritualandexistentialcare,whichis

consistentwithSwintonandPattison’s(2010)pragmaticandfunctionalapproachto

spiritualityandspiritualcare,whichhasbeendescribedinchapter4.2.Accordingto

SwintonandPattison(2010)inordertoprovidefunctionalandpragmaticspiritualand

existentialcare,nursesandcareworkersmusthavethecompetencytoidentifyand

respondeffectivelytotheparticularspiritualandexistentialqueststhattheyencounter,

withinwhateversituationtheyfindthemselvesin.SwintonandPattison(2010,p.235)

notethat:

whatiscalledforintermsofnurseeducationisthereforeflexibilityandconsciousnessraising.Thiswillmeanteachingnursesthesignificanceofspiritualityinwaysthatareflexibleandcontextuallyworkableandraisesthenurses’consciousnesstodimensionsoftheircaringpracticesthatareoftenhiddenorforgotten.

Hence,torisetothechallengeofconsolation,nursesandcareworkersareinneedof

phroneticknowledge(Öhlen,2001).Thiswillbeexplicatedinthefollowing:

DrawingonAristotle,Benner(2000a)pointsoutthatlearningtobeagoodpractitioner

requiresdevelopingthemoralimaginationandskillsofbeingagoodpractitioner.

AccordingtoBenner(2000a),Aristotlelabeledthekindofknowingwhichrequires

moralagency,discernmentandrelationshipasphronesis,incontrasttotechne,which

involvesknowledgeaboutmakingthingsorproducingoutcomesandshe(2000a)

90

emphasizesthatnursing,asapracticerequiresbothtechneandphronesisasdescribed

byAristotle.Benner(2000a)emphasizesthatwhiletechne,ortheactivityofproducing

outcomes,isgovernedbyameans-endrationality,phronesisbycontrast,islodgedina

practicewhichcannotrelystrictlyonameans-endrationalitybecauseone’sactsare

governedbyconcernfordoinggoodinparticularcircumstances,wherebeingin

relationshipanddiscerningparticularhumanactionsareatstakeandguideaction.

Benner(2004)emphasizesthatmeansandendsareinextricablyrelatedincaringforthe

ill.

AccordingtoBenner(2000a,2004)thenurseandthepatientbendandrespondtoeach

othersothathorizonsandtheworldareopenedandreconstitutedsothatnew

possibilitiesemerge.Healingandrecoveryofone’sembodiedrelationshiptotheworld

ismysterious.Itislivedratherthanmasteredandrequiresrelationship,opennessand

trust.(Benner’sviewpoints(2000a,2004)resonatewiththerelationalandhealing

dimensionsofconsolation,whichhavebeendiscussedinsections10.1.2and10.1.3.)

Hence,techniquealonecannotaddresstheinterpersonalandrelationalresponsibilities,

discernment,situatedpossibilitiesandchallengesthatnursesandcareworkers

encounterintheireffortstoconsolethevulnerablesufferinganddying.

Benner(2000a)notesthatthephroneticknowledgewhichexperiencednursespossess

canonlybetransferredtothelessexperiencedthroughsituatedexperientiallearningin

communitiesofpractitionerswhoforthesakeofgoodpracticecontinuetoliveoutand

improvepractice.Oneofthefeaturesoflearninginapracticecontextisthatexpertsare

abletoguidenovicesthroughthecomplexitiesofpractice(Benner,1984).Benner

(1984)emphasizesthatmuchclinicalknowhowissituationalandtacitandcanonlybe

demonstratedastheparticularsituationarises.Thevarietyandexceptionsinactual

clinicalpracticeeludetextbookdescriptionsbutgraduallyyieldtotheexperienced

nurse’sfundofpastsimilaranddissimilarsituations.Itisthisdemonstrationthatisso

essentialtothenovice(Benneretal.,2010).Benner(1984,2000a)andBenneretal.’s

(2010)viewpointsaresupportedbysituatedlearningtheorists,whomaintainthat

knowledgeisembeddedwithinthecontextinwhichitisusedandcannotbeseparated

fromtheactivity,contextandcultureofthatsituation(Gieselmanetal.,2000).

AccordingtoLaveandWenger(1991)situatedlearningiscentralforbecoming

91

proficientandtheystatethatlearninginpracticeisamatterofacculturation,ofjoininga

communityofpractice,ratherthantheapplicationofdecontextualizedskillsand

principles.

AccordingtoConeandGiske’s(2013)study,nursingstudentsneedtoseehowspiritual

carecanbepromotedinthefastpacedhospital-environmentaswellasotherclinical

settings,andtheypointoutthatmakingspiritualcareassessmentsandinterventions

morevisibleandexplicitinclinicalstudieswillpromotestudents’maturationandthus

improvetheirprofessionalgrowth.ConeandGiske(2013)foundthatthereisagreat

needfornursingstudentstoseenurseswhorole-modelassessment,spiritualcare

givinganddocumentation,andthey(2013)pointoutthatnursescanplayakeyrolein

providingsupportforstudentstostayindifficultorchallengingsituations.By

promotinganopenatmospherefornursingstudentsitiseasierforthemtoovercome

theirvulnerabilityandtosafeguardethicalissues.ConeandGiske(2013)pointoutthat

althoughtheimportanceofrolemodelingiswidelyreportedintheliteratureitisoften

missinginpractice.Thischallengesnurseeducatorstocollaboratewithnursestohelp

thembemoreexplicitinsharinghowtheyprovidespiritualcare.Ifnurseeducatorsare

notdirectlyinvolvedinclinicalsupervisionofstudentsitiscriticallyimportantforthem

toassistnursesandnursepreceptorstomodelspiritualcareassessmentand

interventionsandtodemonstratehowitisdiscussedanddocumentedasapartof

nursingresponsibilities(Cone&Giske,2013).ConeandGiske(2013)emphasizethat

thisisespeciallyimportantinaNorwegiancontextwerespiritualityandreligionare

regardedasveryprivateandpersonalareas(Botvar&Schmidt,2010;Stifoss-Hanssen,

1999;Stifoss-Hanssen&Kallenberg,1998;Ulland&DeMarinis,2014).

10.5.1Recommendations

Theresultsfromthisstudysuggeststhatnursingleaders(inspecialistcareaswellasin

homecareandnursinghomes)andnurseeducatorsshouldcollaboratetocreate

teachingandtrainingschemesbasedonsituatedexperientialandrelationalteaching

formats,inordertoenablecurrentandfuturenursesandcareworkerstoprovide

competentandcompassionatespiritualandexistentialcareforthedying.Thisis

supportedbysituatedlearningtheory(Brownetal.,1989;Gieselmanetal.,2000;Lave&

92

Wenger,1991),andeducationalnursingresearch(Benner,1984,2000a,2000b,2004;

Benneretal.,2010;Cone&Giske,2013),whichunderpintheimportanceofdeveloping

phroneticspiritualandexistentialcarecompetencybylearningfromexperienced

nursesincommunitiesofclinicalpractice(Lave&Wenger,1991).

Nevertheless,althoughthestudyshowsthatthenurses’maturityaswellastheir

personalbeliefsandprofessionalexperiencewereimportant(asillustratedinthe

consolationnarrativesinsection10.1.2),thestudyalsoshowsthatsometimesthiswas

notenough.Withtheexceptionofthetwonurseswhohadstudiedtheologypriorto

takingupnursingcareers,thenursessaidtheyhadmixedfeelingsabouttheirabilityto

provideexistentialandspiritualcarebecausetheyfeltinsecureanduncertainabout

providingreligiousconsolation(paperIp.4).Accordingtothenurses,theirdiscomfort

anduncertaintystemmedfromtheirownpersonalattitudestowardsreligion(paperI

p.4)astheydidnotconsiderthemselvestobereligiousor“veryChristian”asoneof

themputit(paperIIp.5.)andtheyalsoexpressedthattheydidnothaveenoughformal

knowledgeaboutreligion.(Seesection10.1.1)

Thissuggeststhatspiritualandexistentialcareneedstobe“moved”fromtheprivate

commitmentoftheindividualnurseandcareworkertoapublicunderstanding(Ødbehr,

2015).Practicaltrainingprogramsinspiritualandexistentialcareshould,(inaddition

toprovidingexperientiallearningopportunitiesthroughsituatedbedsideteaching),

introducenursesandcareworkerstothenatureandlexiconoflivedreligion,religious

perspectivesonsufferingandreligiousreasoning(Pesut,2016;Swinton&Pattison,

2010).Practicaltrainingprogramscouldalsoincludeinterdisciplinaryandcross

professionalcollaborationbetweennursingstaffandchaplains.(Ødbehr,2015).This

mightenhancenurses’andcareworkers’couragetorisetothechallengeofconsolation

insituationswherethecomplexitiesofspiritualityandreligioncomeintoplay:AsPesut

pointsout:“Thedegreetowhichpatientscontinuetobringreligiousperspectivesto

careisthedegreetowhichnursingneedstoconsiderthoseperspectives.”(Pesut,2016,

p.7)

93

Baldacchino(2011)constructedastudyunitinspiritualcareforqualifiednursesnamed

“SpiritualCopinginIllnessandcare”.Thestudyunitconsistedof4ECTSandemployeda

varietyofdidacticmethods,whichincludedlectures,patientcasestudies,smallgroup

discussionsandsharingclinicalexperiences,self-reflectiveexercisesonpersonal

spiritualityandnursingpractice.AccordingtoBaldacchino(2011),theevaluation

reportedthatthestudyunithadbeenbeneficialasthelearnershadtimetothink

criticallyabouttheirownspiritualityandtheircurrentclinicalpractice.Theevaluation

suggestedthatthenurses’increasedknowledgeaboutconceptsofspirituality,spiritual

distress,spiritualwellbeing,spiritualcopingandspiritualcareappearedtohelpthemto

seethepossibilityofmeetingpatients’needsthroughtheimplementationofholistic

careandtobecomearesourceofknowledgefortheircolleagues.However,Baldacchino

(2011)alsopointedoutthatinalong-termperspective,mentorshipisneededinorder

toenablenursestoputtheoryintopracticeandtosustaintheminpracticingwhatthey

havelearned.

Alessqualifiedworkforceincreasinglydominatesnursinghomesandhomecarenursing

atatimeofincreasingprevalenceofcomplexheathconcerns(Annearetal.,2014;

Colomboetal.,2011;Leclercetal.,2014;NorwegianMinistryofHealthandCare

Services,2012).Mobileexpertnurseteachingteamsinspiritualandexistentialcare,

(andotherrelevantfieldsofnursing,suchashospice,dementiaandgeriatriccare)may

beapedagogicallyeffectiveandpracticalmeanstoredressthewideninggapbetween

workforcequalityandthedemandforhighqualitycareinprimaryhealthcare(Annear

etal.,2014).However,whilethelevelofindividualnursingcompetencyisimportant,

onemustalsokeepinmindthatthequalityofthecarewhichisdeliveredalsorestson

institutionalvariables,suchasthegeneralworkplaceculture,philosophy,leadership

andorganizationofcare,includingtimeandstaffresources(Caseyetal.,2011).

94

11.Concludingremarks

Thestudyshowsthatconsolationisadeeplyrelationalpractice,andthatenteringinto

relationshipswiththesufferinganddyingdemandscourageandcompassion.Being

willingtoembraceandacceptone’sownaswellasthepatients’vulnerability,mortality

andhelplessnessrequirespersonalmaturityandenduranceaswellasclinical

competencyandprofessionaljudgment(phronesis).Thestudysuggeststhatnursesand

careworkersmayeasesomeofthedyingpatient’sexistentialandspiritualloneliness

throughthepowerofconsolingpresence.Whennothingelsecanbedone,bearing

witnessandsharingthepatients’sufferingmaybeconsolingactsinthemselves.Nurses

andcareworkersinend-of-lifecareconfrontintractablesuffering.Hence,theycannot

alwaysexpecttobesuccessfulintheireffortstoalleviatethespiritualandexistential

sufferingofthedying.Therefore,thestudyresults,whichindicatethatconsolationcan

beconveyedandsustainedthroughpresenceandrelatedness,areextremelyimportant.

Furtherempiricalresearch(qualitativeaswellasquantitative)isneededtouncover

hownursesprovidespiritualandexistentialcarefordyingpatientsineverydaypractice

andtodevisepractical,experientialandrelationaltoolsandcurriculatoteachandtrain

currentandfuturenursingstaff(nursesandcareworkers)toprovidecompetentand

compassionatespiritualandexistentialcareforthedying.Suchresearchisanimportant

andvaluableknowledgesupplementtotheoreticalstudiesinthisfield.

95

ReferencesAbbey,J.,Froggatt,K.A.,Parker,D.,&Abbey,B.(2006).Palliativecareinlong-termcare:

asysteminchange.InternationalJournalofOlderPeopleNursing,1(1),56-63.doi:10.1111/j.1748-3743.2006.00010.x

Annear,M.,Lea,E.,&Robinson,A.(2014).Arecareworkersappropriatementorsfornursingstudentsinresidentialagedcare?BMCNursing,13(1),44.

Appleton,J.V.(1995).Analysingqualitativeinterviewdata:addressingissuesofvalidityandreliability.JournalofAdvancedNursing,22(5),993-997.

Avis,M.,&Freshwater,D.(2006).Evidenceforpractice,epistemology,andcriticalreflection.NursingPhilosophy,7(4),216-224.

Bachner,Y.,O'Rourke,N.,&Carmel,S.(2011).FearofDeath,MortalityCommunication,andPsychologicalDistressAmongSecularandReligiouslyObservantFamilyCaregiversofTerminalCancerPatients.DeathStudies,35(2),163-187.doi:10.1080/07481187.2010.535390

Back,A.L.,Bauer-Wu,S.M.,Rushton,C.H.,&Halifax,J.(2009).Compassionatesilenceinthepatient-clinicianencounter:acontemplativeapproach.JournalofPalliativeMedicine,12(12),1113-1117.doi:10.1089/jpm.2009.0175

Back,A.L.,Rushton,C.H.,Kaszniak,A.W.,&Halifax,J.S.(2015).“WhyAreWeDoingThis?”:ClinicianHelplessnessintheFaceofSuffering.JournalofPalliativeMedicine,18(1),26-30.

Balboni,M.J.,Sullivan,A.,Amobi,A.,Phelps,A.C.,Gorman,D.P.,Zollfrank,A.,...Balboni,T.A.(2013).Whyisspiritualcareinfrequentattheendoflife?Spiritualcareperceptionsamongpatients,nurses,andphysiciansandtheroleoftraining.JournalofClinicalOncology,31(4),461-467.doi:10.1200/jco.2012.44.6443

Baldacchino,D.R.(2011).Teachingonspiritualcare:Theperceivedimpactonqualifiednurses.NurseEducationinPractice,11(1),47-53.

Bandura,A.(1986).Socialfoundationsofthoughtandaction:Asocialcognitivetheory:Prentice-Hall,Inc.

Belzile,J.A.,&Öberg,G.(2012).Wheretobegin?Grapplingwithhowtouseparticipantinteractioninfocusgroupdesign.QualitativeResearch,12(4),459-472.

Benner,P.(1984).Fromnovicetoexpert:excellenceandpowerinclinicalnursingpractice.MenloPark,Calif.:Addison-Wesley.

Benner,P.(2000a).Therolesofembodiment,emotionandlifeworldforrationalityandagencyinnursingpractice.NursingPhilosophy,1(1),5-1915p.

Benner,P.(2000b).Thewisdomofourpractice.AJNTheAmericanJournalofNursing,100(10),99-105.

Benner,P.(2004).UsingtheDreyfusmodelofskillacquisitiontodescribeandinterpretskillacquisitionandclinicaljudgmentinnursingpracticeandeducation.Bulletinofscience,technology&society,24(3),188-199.

Benner,P.,Sutphen,M.,Leonard,V.,&Day,L.(2010).Educatingnurses:acallforradicaltransformation.SanFrancisco,Calif.:Jossey-Bass.

Benner,P.,&Wrubel,J.(1989).Theprimacyofcaring:Stressandcopinginhealthandillness:Addison-Wesley/AddisonWesleyLongman.

Benzein,E.(1999).Tracesofhope.(PhD.thesis),UmeåUniversity,MedicalDissertations,UmeåUniversity(NewSeriesNo.636–ISSN0346-6612)

Biblegateway.(2011).TheNewTestament,NewInternationalVersion.Retrievedfromhttps://www.biblegateway.com/passage/?search=Luke+10%3A25-37

96

Bollig,G.,Rosland,J.H.,&Husby,B.(2013).AchievementandchallengesofpalliativecareinNorway.EuropeanJournalofPalliativeCare,20,256-259.

Bosma,H.,Apland,L.,&Kazanjian,A.(2010).Culturalconceptualizationsofhospicepalliativecare:moresimilaritiesthandifferences.PalliativeMedicine,24(5),510-522.doi:10.1177/0269216309351380

Boston,P.,Bruce,A.,&Schreiber,R.(2011).Existentialsufferinginthepalliativecaresetting:anintegratedliteraturereview.JournalofPainandSymptomManagement,41(3),604-618.

Boston,P.,&Mount,B.M.(2006).Thecaregiver'sperspectiveonexistentialandspiritualdistressinpalliativecare.JournalofPainandSymptomManagement,32(1),13-26.

Botvar,P.K.,&Schmidt,U.(Eds.).(2010).ReligionidagensNorge:mellomsekulariseringogsakralisering(ReligionincontemporaryNorway.Betweensecularizationandsacralization).Oslo:Universitetsforlaget

Brown,J.S.,Collins,A.,&Duguid,P.(1989).Situatedcognitionandthecultureoflearning.Educationalresearcher,18(1),32-42.

Bueckert,L.D.,&Schipani,D.S.(Eds.).(2006).SpiritualcaregivinginthehospitalWindowstochaplaincyministry.Kitchener,Ontario:PandoraPress.

Carlsen,B.,&Glenton,C.(2011).WhataboutN?Amethodologicalstudyofsample-sizereportinginfocusgroupstudies.BMCMedicalResearchMethodology,11(1),26.

Casey,D.,Murphy,K.,NiLeime,A.,Larkin,P.,Payne,S.,Froggatt,K.A.,&O’Shea,E.(2011).Dyingwell:factorsthatinfluencetheprovisionofgoodend-of-lifecareforolderpeopleinacuteandlong-staycaresettingsinIreland.JournalofClinicalNursing,20(13-14),1824-1833.

Cassell,E.J.(1991a).Thenatureofsufferingandthegoalsofmedicine:OxfordUniversityPress.

Cassell,E.J.(1991b).Recognizingsuffering.HastingsCenterReport,21(3),24-24.Cho,J.,&Trent,A.(2006).Validityinqualitativeresearchrevisited.QualitativeResearch,

6(3),319-340.Christensen,K.H.(2008).SpiritualcareperspectivesofDanishregisterednurses.

JournalofHolisticNursing,26(1),7-14.Clark,D.,&Seymour,J.(1999).Reflectionsonpalliativecare.BuckinghamPhiladelphia:

OpenUniversityPress.Coetzee,S.K.,&Klopper,H.C.(2010).Compassionfatiguewithinnursingpractice:A

conceptanalysis.Nursing&HealthSciences,12(2),235-243.Colombo,F.,Llena-Nozal,A.,Mercier,J.,&Tjadens,F.(2011).HelpWanted?:Providing

andPayingforLong-TermCare:OECDPublishing.Cone,P.H.,&Giske,T.(2013).Teachingspiritualcare–agroundedtheorystudyamong

undergraduatenursingeducators.JournalofClinicalNursing,22(13-14),1951-1960.

Costello,J.(2006).Dyingwell:nurses’experiencesof‘goodandbad’deathsinhospital.JournalofAdvancedNursing,54(5),594-601.

Cranz,G.(2000).TheAlexanderTechniqueintheworldofdesign:postureandthecommonchair.JournalofBodyworkandMovementTherapies,4(2),90-98.doi:http://dx.doi.org/10.1054/jbmt.1999.0162

Damasio,A.(1999).TheFeelingofWhatHappens,BodyandEmotionintheMakingofConsciousness.NewYork:Harcourt&BraceCo.

97

Dauenhauer,B.,&Pellauer,D.(2014).PaulRicoeur.TheStanfordEncyclopediaofPhilosophy.Summer2014.Retrievedfromhttp://plato.stanford.edu/archives/sum2014/entries/ricoeur/

Dehlholm-Lambertsen,B.,&Maunsbach,M.(1997).Qualitativemethodsinempiricalhealthresearch.III.Theindividualin-depthinterview.NordiskMedicin,112(3),94-98.

Delgado-Guay,M.O.,Hui,D.,Parsons,H.A.,Govan,K.,DelaCruz,M.,Thorney,S.,&Bruera,E.(2011).Spirituality,religiosity,andspiritualpaininadvancedcancerpatients.JournalofPainandSymptomManagement,41(6),986-994.

Delmar,C.(2004).DevelopmentofEthicalExpertise:AQuestionofCourage.InternationalJournalforHumanCaring,8(3).

Delmar,C.(2012).Theexcessesofcare:amatterofunderstandingtheasymmetryofpower.NursingPhilosophy,13(4),236-243.

DeMarinis,V.(2008).TheimpactofpostmodernizationonexistentialhealthinSweden:psychologyofreligion'sfunctioninexistentialpublichealthanalysis.ArchiveforthePsychologyofReligion/ArchivfürReligionspychologie,30(1),57-74.

DeMarinis,V.,Ulland,D.,&Karlsen,K.E.(2011).Philosophy’sroleforguidingtheoryandpracticeinclinicalcontextsgroundedinaculturalpsychiatryfocus:AcasestudyillustrationfromsouthernNorway.WorldCulturalPsychiatryResearchReview,6(1),47-56.

Devers,K.J.,&Frankel,R.M.(2000).PRACTICALADVICE,Studydesigninqualitativeresearch—2:Samplinganddatacollectionstrategies.Educationforhealth,13(2),263-271.

Eells,T.D.(1999).WhatDoWeKnowAboutMasterTherapists?TheJournalofPsychotherapyPracticeandResearch,8(4),314-317.

EuclidNetwork.(2012).RoundtableoninnovationandvalueinpalliativecareinEurope(Report).Retrievedfromhttp://www.euclidnetwork.eu/projects/current-projects/social-experimentation/roundtable-on-innovation-and-value-in-palliative-care-in-europe.html

Figley,C.R.(1995).Compassionfatigue:Copingwithsecondarytraumaticstressdisorderinthosewhotreatthetraumatized:Routledge.

Finlay,L.(2012).DebatingphenomenologicalmethodsHermeneuticphenomenologyineducation(pp.17-37):Springer.

Frankl,V.(1969).Thewilltomeaning:Principlesandapplicationoflogotherapy.World,NewYork.

Gadamer,H.-G.(2004).TruthandMethod(Second,RevisedEditioned.).LondonNewYork:Continuum.

Geanellos,R.(2000).ExploringRicoeur’shermeneutictheoryofinterpretationasamethodofanalysingresearchtexts.NursingInquiry,7(2),112-119.

Gieselman,J.A.,Stark,N.,&Farruggia,M.J.(2000).Implicationsofthesituatedlearningmodelforteachingandlearningnursingresearch.TheJournalofContinuingEducationinNursing,31(6),263-268.

Gjengedal,E.,Ekra,E.M.,Hol,H.,Kjelsvik,M.,Lykkeslet,E.,Michaelsen,R.,...Wogn-Henriksen,K.(2013).Vulnerabilityinhealthcare–reflectionsonencountersineverydaypractice.NursingPhilosophy,14(2),127-138.doi:10.1111/j.1466-769X.2012.00558.x

Golafshani,N.(2003).Understandingreliabilityandvalidityinqualitativeresearch.Thequalitativereport,8(4),597-606.

98

Goud,N.H.(2005).Courage:Itsnatureanddevelopment.TheJournalofHumanisticCounseling,EducationandDevelopment,44(1),102-116.

Graneheim,U.H.,&Lundman,B.(2004).Qualitativecontentanalysisinnursingresearch:concepts,proceduresandmeasurestoachievetrustworthiness.NurseEducationToday,24(2),105-112.

Groenvold,M.,Pedersen,C.,Jensen,C.,Faber,M.,&Johnsen,A.(2006).Kræftpatientensverden-enundersøgelseafhvaddanskekræftpatienterharbrugfor-resultater,vurderingerogforslag(Thecancerpatients'world-astudyofwhatDanishcancerpatientsneed).Retrievedfromhttp://forskningsbasen.deff.dk/Share.external?sp=Sdfb3a4b0-70eb-11dc-bee9-02004c4f4f50&sp=Sku

Gullestad,M.(1996).EverydayLifePhilosophers.Norway:Universitetsforlaget.Halcomb,E.J.,Gholizadeh,L.,DiGiacomo,M.,Phillips,J.,&Davidson,P.M.(2007).

Literaturereview:considerationsinundertakingfocusgroupresearchwithculturallyandlinguisticallydiversegroups.JournalofClinicalNursing,16(6),1000-1011.doi:10.1111/j.1365-2702.2006.01760.x

Halifax,J.(2012).Aheuristicmodelofenactivecompassion.CurrOpinSupportPalliatCare,6(2),228-235.

Halifax,J.(2014).GRACEfornurses:Cultivatingcompassioninnurse/patientinteractions.JournalofNursingEducationandPractice,4(1),121.

Hardiman,P.,&Simmonds,J.G.(2013).Spiritualwell-being,burnoutandtraumaincounsellorsandpsychotherapists.MentalHealth,Religion&Culture,16(10),1044-1055.

Harlos,M.(2010).Theterminalphase.InN.A.Christakis,Cherny,N.I(Ed.),Oxfordtextbookofpalliativemedicine.(Fourtheditioned.,pp.1549-1559).Oxford:OxfordUniversityPress.

Haug,S.H.K.(2015).”Theillnessexperiencesofolderpeoplewithincurablecancerinspecializedpalliativehealthcarecontexts.Aqualitativestudyinclinicalpsychologyofreligionoftheinteractionsbetweendailylivingandexistentialmeaning–making.”.(PhD,MFSchoolofTheology,OsloPhD),MFSchoolofTheology,Oslo,Oslo.

Haug,S.H.K.,Danbolt,L.J.,Kvigne,K.,&Demarinis,V.(2014).Howolderpeoplewithincurablecancerexperiencedailyliving:AqualitativestudyfromNorway.PalliativeandSupportiveCare,1-12.

Heidegger,M.(1962).Beingandtime(JohnMacquarrieandEdwardRobinson,Trans.).Oxford:BasilBlackwell.

Henoch,I.,&Danielson,E.(2009).Existentialconcernsamongpatientswithcancerandinterventionstomeetthem:anintegrativeliteraturereview.Psycho-Oncology,18(3),225-236.

Hess,J.D.(2003).Gadow'srelationalnarrative:anelaboration.NursingPhilosophy,4(2),137-148112p.

Hollinghurst,S.,Sharp,D.,Ballard,K.,Barnett,J.,Beattie,A.,Evans,M.,...Little,P.(2008).RandomisedcontrolledtrialofAlexandertechniquelessons,exercise,andmassage(ATEAM)forchronicandrecurrentbackpain:economicevaluation.BMJ,337.doi:10.1136/bmj.a2656

Holloway,M.,Adamson,S.,McSherry,W.,&Swinton,J.(2011).Spiritualcareattheendoflife:Asystematicreviewoftheliterature.DepartmentofHealth,London.

Horney,K.(1950).TheCollectedWorksofKarenHorney:Selfanalysis.Neurosisandhumangrowth(Vol.2):WWNorton.

99

Husserl,E.(1970).ThecrisisofEuropeansciencesandtranscendentalphenomenology:Anintroductiontophenomenologicalphilosophy(D.Carr,Trans.):Evanston,IL:NorthwesternUniversityPress.

Ilkjær,I.(2012).Ånde-nød:Enundersøgelseafeksistentielleogåndeligefænomenersbetydningforalvorligtsygepatientermedkronisklungelidelse.(Difficultiesinbreathing.Aninvestigationofsignificanceofexistentialandspiritualphenomenaforseriouslyillpatientswithchronicobstructivepulmonarydisease.).(Phd,DetTeologiskeFakultet,UniversitetetiKøbenhavn(UniversityofCopenhagen).).Retrievedfromhttp://curis.ku.dk/ws/files/63613346/Ingeborg_Ilkjaer_Aande_noed_til_CURIS.pdf

Ivic,S.(2009).Ricoeur’snarrativetheoryappliedtoscience.PhilosophicalPapersandReviews,1(3),044-051.

Jordan,J.V.(2003).Valuingvulnerability:Newdefinitionsofcourage.WorkinProgress,paperNo102,1-13.

Jordens,C.F.,&Little,M.(2004).‘Inthisscenario,Idothis,forthesereasons’:narrative,genreandethicalreasoningintheclinic.SocialScienceandMedicine,58(9),1635-1645.

Jung,C.G.,&VonFranz,M.-L.(1968).Manandhissymbols:Laurel.Kahn,D.L.,&Steeves,R.H.(1986).Theexperienceofsuffering:conceptualclarification

andtheoreticaldefinition.JournalofAdvancedNursing,11(6),623-631.Kalish,N.(2012).Evidence-basedspiritualcare:aliteraturereview.CurrOpinSupport

PalliatCare,6(2),242-246.doi:10.1097/SPC.0b013e328353811cKarlsson,M.,Friberg,F.,Wallengren,C.,&Öhlén,J.(2014).Meaningsofexistential

uncertaintyandcertaintyforpeoplediagnosedwithcancerandreceivingpalliativetreatment:alife-worldphenomenologicalstudy.BMCPalliativeCare,13(1),28.

Kitzinger,J.(1995).Qualitativeresearch.Introducingfocusgroups.BMJ,311(7000),299-302.

Klass,D.(1999).Thespirituallivesofbereavedparents:PsychologyPress.Klass,D.(2014).Grief,Consolation,andReligions:AConceptualFramework.OMEGA-

JournalofDeathandDying,69(1),1-18.doi:10.2190/OM.69.1.aKoenig,H.,King,D.,&Carson,V.B.(2012).Handbookofreligionandhealth:Oxford

universitypress.Kvale,S.,&Brinkmann,S.(2008).Interviews:Learningthecraftofqualitativeresearch

interviewing:SagePublications,Incorporated.laCour,P.(2008).Existentialandreligiousissueswhenadmittedtohospitalinasecular

society:Patternsofchange.MentalHealth,Religion&Culture,11(8),769-782.laCour,P.,&Hvidt,N.C.(2010).Researchonmeaning-makingandhealthinsecular

society:Secular,spiritualandreligiousexistentialorientations.SocialScienceandMedicine,71(7),1292-1299.

Lakoff,G.,&Johnson,M.(1999).Philosophyintheflesh:Theembodiedmindanditschallengetowesternthought:Basicbooks.

Lartey,E.Y.(1997).Inlivingcolour:aninterculturalapproachtopastoralcareandcounselling:Cassell.

Lave,J.,&Wenger,E.(1991).Situatedlearning:legitimateperipheralparticipation.Cambridge:CambridgeUniversityPress.

Lazarus,R.S.(1991).Emotionandadaptation.NewYork:OxfordUniversityPress.

100

Leclerc,B.S.,Lessard,S.,Bechennec,C.,LeGal,E.,Benoit,S.,&Bellerose,L.(2014).Attitudestowarddeath,dying,end-of-lifepalliativecare,andinterdisciplinarypracticeinlongtermcareworkers.JournaloftheAmericanMedicalDirectorsAssociation,15(3),207-213.doi:10.1016/j.jamda.2013.11.017

Lincoln,Y.S.,&Guba,E.G.(1985).Naturalisticinquiry.BeverlyHills,Calif.:Sage.Lindseth,A.(1992).Theroleofcaringinnursingethics.InG.Udén(Ed.),Quality

developmentinnursingcare.Frompracticetoscience(1ed.,pp.97-106).LinköpingUniversity,LinköpingSweden:LinköpingCollaborationCentreLCC.

Lindseth,A.(2015).BeingIllasanInevitableLifeTopicPossibilitesofPhilosophicalPracticeinHealthCareandPsychotherapy.InM.N.Weiss(Ed.),TheSocraticHandbook(Vol.Band9,pp.440).Wien,Österreich:LITVerlag.

Lindseth,A.,&Norberg,A.(2004).Aphenomenologicalhermeneuticalmethodforresearchinglivedexperience.ScandinavianJournalofCaringSciences,18(2),145-153.

Lundmark,M.(2006).AttitudestospiritualcareamongnursingstaffinaSwedishoncologyclinic.JournalofClinicalNursing,15(7),863-874.doi:10.1111/j.1365-2702.2006.01189.x

Løgstrup,K.E.(1956).DenEtiskeFordring(TheEthicalDemand)København:Gyldendal.Løgstrup,K.E.(1968).OpgørmedKierkegaard.København:Gyldendal.Løgstrup,K.E.(1971).Etiskebegreberogproblemer(Ethicalconceptsandproblems)

København:GyldendalskeBoghandel,NordiskforlagAS.Løgstrup,K.E.(1997).TheEthicalDemand(T.I.Jensen,Puckering,G.,Watkins,E.,

Trans.).NotreDame,Ill:UniversityofNotreDamePress.Løgstrup,K.E.(2007).BeyondtheEthicalDemand,withintroductionbyKeesvanKooten

Niekerk(SusanDewandHeidiFlegal,Trans.):UniversityofNotreDamePress,NotreDame,Indiana.

Malone,R.E.(2000).Dimensionsofvulnerabilityinemergencynurses'narratives.Advancesinnursingscience,23(1),1-11.

Malpas,J.(2015).Hans-GeorgGadamer.TheStanfordEncyclopediaofPhilosophyRetrievedfrom<http://plato.stanford.edu/archives/sum2015/entries/gadamer/>

Malterud,K.(2011).Kvalitativemetoderimedisinskforskning:eninnføring(Anintroductiontoqualitativemethodsinmedicalresearch).Oslo:Universitetsforl.

Martinsen,K.(1993).FraMarxtilLøgstrup.Ometikkogsanselighetisykepleien(FromMarxtoLøgstrup.Aboutethicsandsensitivityinnursing).TANOAS,Otta.

Martinsen,K.(1997).FromMarxtoLogstrup(Translationinprogress)(2ndedn.ed.).Oslo,Norway:Tano.

Martinsen,K.(2000).Øyetogkallet(TheEyeandtheCalling):Fagboklaget.Martinsen,K.(2006).Careandvulnerability:Akribe.Maslow,A.H.(1968).Towardapsychologyofbeing.NewYork:HarperandRow.Maslow,A.H.(1972).Thefartherreachesofhumannature:MauriceBassett.Maslow,A.H.,Frager,R.,Fadiman,J.,McReynolds,C.,&Cox,R.(1970).Motivationand

personality(Vol.2):Harper&RowNewYork.Masters,K.,&Hooker,S.(2013).Religion,spirituality,andhealth.InR.F.Paloutzian,&

Park.C.L(Ed.),Handbookofthepsychologyofreligionandspirituality(pp.519-539).NewYork,London:TheGuilfordPress.

McDonald,C.,&McIntyre,M.(2001).Reinstatingthemarginalizedbodyinnursingscience:epistemologicalprivilegeandthelivedlife.NursingPhilosophy,2(3),234-239.

101

McSherry,W.,&Jamieson,S.(2013).Thequalitativefindingsfromanonlinesurveyinvestigatingnurses'perceptionsofspiritualityandspiritualcare.JournalofClinicalNursing,22(21-22),3170-3182.doi:10.1111/jocn.12411

Merleau-Ponty,M.(1962).PhenomenologyofPerception[PhénoménologiedelaPerception](C.Smith,Trans.):Routledge&KeganPaul.

Merleau-Ponty,M.,Dreyfus,H.L.,&Dreyfus,P.A.(1964).Senseandnon-sense.Evanston,Ill.:NorthwesternUniversityPress.

Mishler,E.G.(1986).Researchinterviewing:contextandnarrative.Cambridge,Mass.:HarvardUniversityPress.

Morse,J.M.,Barrett,M.,Mayan,M.,Olson,K.,&Spiers,J.(2008).Verificationstrategiesforestablishingreliabilityandvalidityinqualitativeresearch.Internationaljournalofqualitativemethods,1(2),13-22.

Najjar,N.,Davis,L.W.,Beck-Coon,K.,&Doebbeling,C.C.(2009).Compassionfatigueareviewoftheresearchtodateandrelevancetocancer-careproviders.JournalofHealthPsychology,14(2),267-277.

Narayanasamy,A.(2014).TheChallengesofTeachingandLearningSpiritualityinNursing.JournalofNursingCare,3(189),2167-1168.1000189.

Noble,A.,&Jones,C.(2010).Gettingitright:oncologynurses'understandingofspirituality.InternationalJournalofPalliativeNursing,16(11),565-569.

Nolan,S.,Saltmarsh,P.,Leget,C.(2011).Spiritualcareinpalliativecare:workingtowardsanEAPCTaskForce.EJPC,18,86-89.

Norberg,A.(2001).ConsolingCareforPeoplewithAlzheimer'sDiseaseorAnotherDementiaintheAdvancedStage.Alzheimer'sCareToday,2(2),46-52.

Norberg,A.,Bergsten,M.,&Lundman,B.(2001).Amodelofconsolation.NursingEthics,8(6),544-553.

Nortvedt,P.(1998).Sensitivejudgement:aninquiryintothefoundationsofnursingethics.NursingEthics,5(5),385-386.

NorwegianDirectorateofHealth.(2015).Nasjonalthandlingsprogrammedretningslinjerforpalliasjonikreftomsorgen(Nationalactionprogramwithguidelinesforpalliativecancercare)Retrievedfromhttps://helsedirektoratet.no/retningslinjer/nasjonalt-handlingsprogram-med-retningslinjer-for-palliasjon-i-kreftomsorgen

NorwegianMinistryofHealthandCareServices.(2012).ReportNo10(2012-2013)totheStorting(Parliament).Goodquality-safeservicesQualityandpatientsafetyinhealthandcareservices.Oslo:FullversioninNorwegian:Stortingsmeldingnr.10(2012-2013)Godkvalitet-tryggetjenesterKvalitetogpasientsikkerhetihelseogomsorgstjenestenOslo:Helseogomsorgsdepartementet2012.Retrievedfromhttp://www.regjeringen.no/pages/38154897/PDFS/STM201220130010000DDDPDFS.pdf

Nouwen,H.,McNeill,D.,&Morrison,D.(2008).Compassion:areflectionontheChristianlife.London:Darton,LongmanandTodd.

NSD.(2016).DataProtectionOfficialforResearch.Retrievedfromhttp://www.nsd.uib.no/nsd/english/pvo.html

Onwuegbuzie,A.J.,&Leech,N.L.(2007).Validityandqualitativeresearch:Anoxymoron?Quality&Quantity,41(2),233-249.

Paley,J.(2008).Spiritualityandnursing:areductionistapproach.NursingPhilosophy,9(1),3-18.

Paloutzian,R.F.,&Park,C.L.(Eds.).(2013).Handbookofthepsychologyofreligionandspirituality.NewYorkLondon:GuilfordPress.

102

Pargament,K.I.(2013).ConversationswithEeyore:Spiritualityandthegenerationofhopeamongmentalhealthproviders.BulletinoftheMenningerClinic,77(4),395-412.

Park,C.L.(2013).RelgionandMeaning.InR.F.Paloutzian&C.L.Park(Eds.),Handbookofthepsychologyofreligionandspirituality:TheGuildfordPressNewYork.

Patton,M.Q.(1990).Qualitativeevaluationandresearchmethods:SAGEPublications,inc.

Patton,M.Q.(2002).Qualitativeresearch&evaluationmethods.ThousandOaks,Calif.:SagePublications.

Pesut,B.(2008a).Areplyto‘Spiritualityandnursing:areductionistapproach’byJohnPaley.NursingPhilosophy,9(2),131-137.

Pesut,B.(2008b).Spiritualityandspiritualcareinnursingfundamentalstextbooks.JournalofNursingEducation,47(4),167-173.

Pesut,B.(2016).Therebedragons:effectsofunexploredreligiononnurses’competenceinspiritualcare.NursingInquiry.

Pesut,B.,Fowler,M.,Taylor,E.J.,Reimer-Kirkham,S.,&Sawatzky,R.(2008).Conceptualisingspiritualityandreligionforhealthcare.JournalofClinicalNursing,17(21),2803-2810.doi:10.1111/j.1365-2702.2008.02344.x

Pesut,B.,Sawatzky,R.,Stajduhar,K.I.,McLeod,B.,Erbacker,L.,&Chan,E.K.(2014).Educatingnursesforpalliativecare:Ascopingreview.JournalofHospiceandPalliativeNursing,16(1),47-54.

Peternelj-Taylor,C.A.,&Yonge,O.(2003).ExploringBoundariesintheNurse-ClientRelationship:ProfessionalRolesandResponsibilities.PerspectivesinPsychiatricCare,39(2),55-66.

Polkinghorne,D.E.(1988).Narrativeknowingandthehumansciences:SunyPress.Pope,C.,Ziebland,S.,&Mays,N.(2000).Qualitativeresearchinhealthcare:analysing

qualitativedata.BMJ:BritishMedicalJournal,320(7227),114.Porter,S.E.,&Robinson,J.C.(2011).Hermeneutics:Anintroductiontointerpretive

theory:Wm.B.EerdmansPublishing.Puchalski,C.M.,Ferrell,B.,Virani,R.,Otis-Green,S.,Baird,P.,Bull,J.,...Sulmasy,D.

(2009).Improvingthequalityofspiritualcareasadimensionofpalliativecare:thereportoftheConsensusConference.JournalofPalliativeMedicine,12(10),885-904.doi:10.1089/jpm.2009.0142

Rachman,S.J.(1978).Fearandcourage:SanFrancisco:Freeman.Raingruber,B.,&Kent,M.(2003).Attendingtoembodiedresponses:Awaytoidentify

practice-basedandhumanmeaningsassociatedwithsecondarytrauma.QualitativeHealthResearch,13(4),449-468.

Ray,S.L.(2006).Embodimentandembodiedengagement:Centralconcernsforthenursingcareofcontemporarypeacekeeperssufferingfrompsychologicaltrauma.PerspectivesinPsychiatricCare,42(2),106-113.

Reed,P.G.(1992).Anemergingparadigmfortheinvestigationofspiritualityinnursing.ResearchinNursingandHealth,15(5),349-357.

Reimer-Kirkham,S.(2009).Livedreligion:implicationsfornursingethics.NursingEthics,16(4),406-417.doi:10.1177/0969733009104605

Ricoeur,P.(1976).Interpretationtheory:discourseandthesurplusofmeaning.FortWorth,Tex.:TexasChristianUniversityPress.

Ricoeur,P.(1981).Hermeneuticsandthehumansciences:Essaysonlanguage,actionandinterpretation(J.B.Thompson,Trans.J.B.ThompsonEd.):Cambridgeuniversitypress.

103

Ricoeur,P.(1984).Timeandnarrative.Chicago:UniversityofChicagoPress.Ricoeur,P.(1992).Oneselfasanother(Frenchoriginal1990,EditionsduSeuil).(English

translationbyKBlamey):UniversityofChicagoPress,ChicagoandLondon.Ricoeur,P.(1999).Eksistensoghermeneutikk(ExistenceandHermeneutics)(H.H.Ystad

Ed.):Aschehoug.Ricoeur,P.(2008).Fromtexttoaction:essaysinhermeneutics,II(K.Blamey&J.B.

Thompson,Trans.).London:Continuum.Riessman,C.K.(1993).Narrativeanalysis.NewburyPark,Calif.:Sage.Rogers,C.R.(1961).Onbecomingaperson:Atherapist'sviewofpsychology.Boston:

HoughtonMifflin.Rogers,C.R.(1980).Awayofbeing.Boston:HoughtonMifflin.Romoren,T.I.,Torjesen,D.O.,&Landmark,B.(2011).Promotingcoordinationin

Norwegianhealthcare.IntJIntegrCare,11(Spec10thAnniversaryEd),e127.Rosch,E.(1981).Prototypeclassificationandlogicalclassification:Thetwosystems.In

E.Schnolnick(Ed.),NewtrendsinCognitiveRepresentation:ChallengestoPiaget’stheory(pp.73-96):Hillsdale,NJ:Erbaum.

Rowe,C.,&Broadie,S.(2002).Nicomacheanethics:OxfordUniversityPress.Roxberg,Å.,Eriksson,K.,Rehnsfeldt,A.,&Fridlund,B.(2008).Themeaningof

consolationasexperiencedbynursesinahome-caresetting.JournalofClinicalNursing,17(8),1079-1087.

Rumbold,B.D.(2003).Caringforthespirit:lessonsfromworkingwiththedying.MedicalJournalofAustralia,179(6),S11.

Rushton,C.H.,Kaszniak,A.W.,&Halifax,J.(2013).Aframeworkforunderstandingmoraldistressamongpalliativecareclinicians.JournalofPalliativeMedicine,16(9),1074-1079.

Rushton,C.H.,Sellers,D.E.,Heller,K.S.,Spring,B.,Dossey,B.M.,&Halifax,J.(2009).Impactofacontemplativeend-of-lifetrainingprogram:Beingwithdying.PalliativeandSupportiveCare,7(04),405-414.

Sabo,B.M.(2008).Adversepsychosocialconsequences:Compassionfatigue,burnoutandvicarioustraumatization:Arenurseswhoprovidepalliativeandhematologicalcancercarevulnerable?IndianJournalofPalliativeCare,14(1),23.

Sabo,B.M.(2011a).Compassionatepresence:Themeaningofhematopoieticstemcelltransplantnursing.EuropeanJournalofOncologyNursing,15(2),103-111.doi:http://dx.doi.org/10.1016/j.ejon.2010.06.006

Sabo,B.M.(2011b)."ReflectingontheConceptofCompassionFatigue"TheOnlineJournalofIssuesinNursing,Vol.16(No.1).RetrievedfromTheOnlineJournalofIssuesinNursingwebsite:http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-16-2011/No1-Jan-2011/Concept-of-Compassion-Fatigue.html

Sandelowski,M.(1993).Rigororrigormortis:theproblemofrigorinqualitativeresearchrevisited.Advancesinnursingscience,16(2),1-8.

Sandelowski,M.,&Barroso,J.(2003).Classifyingthefindingsinqualitativestudies.QualitativeHealthResearch,13(7),905-923.

Sandgren,A.,Thulesius,H.,Fridlund,B.,&Petersson,K.(2006).Strivingforemotionalsurvivalinpalliativecancernursing.QualitativeHealthResearch,16(1),79-96.

Sarvimäki,A.,&Stenbock-Hult,B.(2014).Themeaningofvulnerabilitytoolderpersons.NursingEthics,0969733014564908.

104

Sasser,C.G.,&Puchalski,C.M.(2010).Thehumanisticclinician:traversingthescienceandartofhealthcare.JournalofPainandSymptomManagement,39(5),936-940.

Schei,E.(2006).Doctoringasleadership:thepowertoheal.PerspectivesinBiologyandMedicine,49(3),393-406.

Schnell,T.(2009).TheSourcesofMeaningandMeaninginLifeQuestionnaire(SoMe):Relationstodemographicsandwell-being.TheJournalofPositivePsychology,4(6),483-499.

Schnell,T.(2010).Existentialindifference:Anotherqualityofmeaninginlife.JournalofHumanisticPsychology,50(3),351-373.

Schnell,T.,&Keenan,W.J.(2011).Meaning-makinginanatheistworld.ArchiveforthePsychologyofReligion,33(1),55-78.

Seale,C.(1999).Qualityinqualitativeresearch.Qualitativeinquiry,5(4),465-478.Sinclair,S.,&Chochinov,H.M.(2012).Communicatingwithpatientsaboutexistential

andspiritualissues:SACR-Dwork.ProgressinPalliativeCare,20(2),72-78.Sinclair,S.,Torres,M.-B.,Raffin-Bouchal,S.,Hack,T.F.,McClement,S.,Hagen,N.A.,&

Chochinov,H.M.(2016).Compassiontraininginhealthcare:whatarepatients’perspectivesontraininghealthcareproviders?BMCMedicalEducation,16(1),1-10.doi:10.1186/s12909-016-0695-0

Smart,D.,English,A.,James,J.,Wilson,M.,Daratha,K.B.,Childers,B.,&Magera,C.(2014).Compassionfatigueandsatisfaction:Across-sectionalsurveyamongUShealthcareworkers.Nursing&HealthSciences,16(1),3-10.

Solvoll,B.-A.,&Lindseth,A.(2015).Theissueofbeingtouched.Medicine,HealthCareandPhilosophy,1-8.

StanfordUniversitySchoolofMedicine.(2008).Thecenterforcompassionandaltruismresearchandeducation.Retrievedfromhttp://ccare.stanford.edu/about/mission-vision/

StatistiskSentralbyrå(CentralBureauofStatisticsinNorway).(2015).Dennorskekirke(TheNorwegianChurch,2015).Retrievedfromhttps://www.ssb.no/kultur-og-fritid/statistikker/kirke_kostra/aar/2016-05-04

Steinhauser,K.E.,Christakis,N.A.,Clipp,E.C.,McNeilly,M.,McIntyre,L.,&Tulsky,J.A.(2000).Factorsconsideredimportantattheendoflifebypatients,family,physicians,andothercareproviders.JAMA,284(19),2476-2482.

Stifoss-Hanssen,H.(1999).Religionandspirituality:WhataEuropeanearhears.TheInternationalJournalforthePsychologyofReligion,9(1),25-33.

Stifoss-Hanssen,H.,&Kallenberg,K.(1998).Livssynoghelse.Teoretiskeogkliniskeperspektiver(ViewofLifeandHealth.Theoreticalandclinicalperspectives.Oslo:AdNotamGyldendal.

Strang,S.,Henoch,I.,Danielson,E.,Browall,M.,&Melin-Johansson,C.(2014).Communicationaboutexistentialissueswithpatientsclosetodeath—nurses'reflectionsoncontent,processandmeaning.Psycho-Oncology,23(5),562-568.

Strømskag,K.(2012).Ognåskaljegdø:HospicebevegelsenogpalliasjonenshistorieiNorge(AndnowIshalldie:ThehistoryofthehospicemovementandpalliativecareinNorway).Oslo,Norway:PaxforlagA/S.

Sulmasy,D.P.(2002).Abiopsychosocial-spiritualmodelforthecareofpatientsattheendoflife.Thegerontologist,42(suppl3),24-33.

Swinton,J.(2014).Spirituality-in-Healthcare:JustBecauseitMayBe‘MadeUp’DoesNotMeanThatitisNotRealandDoesNotMatter(Keynote5).JournalfortheStudyofSpirituality,4(2),162-173.

Swinton,J.,&Mowat,H.(2006).Practicaltheologyandqualitativeresearch:SCM.

105

Swinton,J.,&Pattison,S.(2010).Movingbeyondclarity:towardsathin,vague,andusefulunderstandingofspiritualityinnursingcare.NursingPhilosophy,11(4),226-237.

Sæteren,B.,Lindström,U.Å.,&Nåden,D.(2011).Latchingontolife:livingintheareaoftensionbetweenthepossibilityoflifeandthenecessityofdeath.JournalofClinicalNursing,20(5-6),811-818.

Söderberg,A.,Gilje,F.,&Norberg,A.(1999).Transformingdesolationintoconsolation:themeaningofbeinginsituationsofethicaldifficultyinintensivecare.NursingEthics,6(5),357-373.

Sørensen,T.(2012).EpidemiologicalStudiesofReligiosBehaviorsandHealthintheNord-TrøndelagHealthStudy(HUNT-3),Norway.(PhD,MFSchoolofTheologyPhD),MFSchoolofTheology,Oslo,Oslo.

Sørensen,T.,Lien,L.,Landheim,A.,&Danbolt,L.J.(2015).Meaning-Making,ReligiousnessandSpiritualityinReligiouslyFoundedSubstanceMisuseServices—AQualitativeStudyofStaffandPatients’Experiences.Religions,6(1),92-106.

Sørlie,V.(2001).Beinginethicallydifficultcaresituations:narrativeinterviewswithregisterednursesandphysicianswithininternalmedicine,oncologyandpaediatrics.(PhD,UmeåUniversity),DepartmentofNursing,UmeåUniversity,Umeå

Talseth,A.-G.,Gilje,F.,&Norberg,A.(2003).Strugglingtobecomereadyforconsolation:experiencesofsuicidalpatients.NursingEthics,10(6),614-623.

Tan,H.M.,Wilson,A.,&Olver,I.(2009).Ricoeur’stheoryofinterpretation:Aninstrumentfordatainterpretationinhermeneuticphenomenology.Internationaljournalofqualitativemethods,8(4),1-15.

Tan,H.M.,Wilson,A.,Olver,I.,&Barton,C.(2011).Theexperienceofpalliativepatientsandtheirfamiliesofafamilymeetingutilisedasaninstrumentforspiritualandpsychosocialcare:Aqualitativestudy.(Researcharticle)(Report).BMCPalliativeCare,10,7.

Thorup,C.B.,Rundqvist,E.,Roberts,C.,&Delmar,C.(2012).Careasamatterofcourage:vulnerability,sufferingandethicalformationinnursingcare.ScandinavianJournalofCaringSciences,26(3),427-435.

Torjuul,K.(2009).Livingwithethicaldilemmas:theethicalreasoningofsurgeonsandnursesinsurgicalunits.(PhD,UniversityofTromsøPhd),UIT(UniversityofTromsø),Tromsø,Norway.Retrievedfromhttp://munin.uit.no/bitstream/handle/10037/2468/thesis.pdf?sequence=3&isAllowed=y

Tornøe,K.A.(1996).Kanvitrøstehjertene?Hvordanmøtealvorligsykeogdøendepasientersåndeligebehov?(Canweconsolethehearts?Howtomeetcriticallyillanddyingpatients'spiritualneeds).Oslo:TanoAschehough.

Torskenæs,K.B.,&Kalfoss,M.H.(2013).TranslationandFocusGroupTestingoftheWHOQOLSpirituality,Religiousness,andPersonalBeliefsModuleinNorway.JournalofHolisticNursing,31(1),25-34.

Torskenæs,K.B.,Kalfoss,M.H.,&Sæteren,B.(2015).Meaninggiventospirituality,religiousnessandpersonalbeliefs:exploredbyasampleofaNorwegianpopulation.JournalofClinicalNursing.

Turner,B.S.,&Dumas,A.(2013).Vulnerability,diversityandscarcity:onuniversalrights.Medicine,HealthCare,andPhilosophy,16(4),663-670.doi:http://dx.doi.org/10.1007/s11019-013-9500-6

106

Udo,C.(2014).Theconceptandrelevanceofexistentialissuesinnursing.EuropeanJournalofOncologyNursing,18(4),347-354.doi:10.1016/j.ejon.2014.04.002

Ulland,D.,&DeMarinis,V.(2014).UnderstandingandworkingwithexistentialinformationinaNorwegianadolescentpsychiatrycontext:aneedandachallenge.MentalHealth,Religion&Culture,17(6),582-593.

Vaismoradi,M.,Turunen,H.,&Bondas,T.(2013).Contentanalysisandthematicanalysis:Implicationsforconductingaqualitativedescriptivestudy.Nursing&HealthSciences,15(3),398-405.

vanKootenNiekerk,K.Introduction.InK.E.Løgstrup(2007),BeyondTheEthicalDemand.UniversityofNotreDamePress:NotreDame,Indiana.

VanManen,M.(1990).Researchinglivedexperience:Humanscienceforanactionsensitivepedagogy:SunyPress.

VanManen,M.(2014).Phenomenologyofpractice:Meaning-givingmethodsinphenomenologicalresearchandwriting(Vol.13):LeftCoastPress.

Vandervelde,P.(2008).Thechallengeofthe‘suchasitwas’:Ricoeur’stheoryofnarratives.InD.Kaplan(Ed.),ReadingRicoeur(pp.141-162):SUNYPress.

Vivat,B.(2008).Measuresofspiritualissuesforpalliativecarepatients:aliteraturereview.PalliativeMedicine,22(7),859-868.doi:10.1177/0269216308095990

Webb,C.(2003).Editor'snote:Introductiontoguidelinesonreportingqualitativeresearch.JournalofAdvancedNursing,42(6),544-545.doi:10.1046/j.1365-2648.2003.02716.x

Webb,C.,&Kevern,J.(2001).Focusgroupsasaresearchmethod:acritiqueofsomeaspectsoftheiruseinnursingresearch.JournalofAdvancedNursing,33(6),798-805.

WHO.(1998).WHOQOLandspirituality,religiousnessandpersonalbeliefs(SRPB).WorldHealthOrganization.(2002).InnovativecareforchronicconditionsBuildingblocks

foractionGlobalReport.Retrievedfromhttp://www.who.int/chp/knowledge/publications/icccglobalreport.pdf

WorldMedicalAssociation.(2001).WorldMedicalAssociationDeclarationofHelsinki.Ethicalprinciplesformedicalresearchinvolvinghumansubjects.BulletinoftheWorldHealthOrganization,79(4),373.

Ødbehr,L.S.(2015).Spiritualcareindementianursing-Aqualitative,exploratorystudy.(PhD,FacultyofMedicine,DepartmentofNursingScience),UniversityofOslo,Oslo.

Ødbehr,L.S.,Kvigne,K.,Hauge,S.,&Danbolt,L.J.(2014).Nurses'andcareworkers'experiencesofspiritualneedsinresidentswithdementiainnursinghomes:aqualitativestudy.BMCNursing,13(1),12.

Öhlen,J.(2001).Practicalwisdom:competenciesrequiredinalleviatingsufferinginpalliativecare.JournalofPalliativeCare,18(4),293-299.

Aadland,E.(1997).Ogegserpådeg…Vitenskapsteoriogmetodeihelse-ogsosialfag(AndIlookatyou...PhilosophyofScienceandmethodsforHealthandSocialstudies)(Vol.2):TanoAschehoug.

Aadnanes,P.M.(2008).Gudforkvarmann:Kyrkjaogdennyereligiøsiteten(Godforeveryone:TheChurchandthenewreligiosity).Oslo:Universitetsforlaget.

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