the enduring work of terminally ill people

262 Pages·2010·3.13 MB·English

by  Niven, Elizabeth

Copyright is owned by the Author of the thesis. Permission is given for
a copy to be downloaded by an individual for the purpose of research and
private study only. The thesis may not be reproduced elsewhere without
the permission of the Author.
LIVINTGO WARD DEATH:
theen durwionrgok f t erminialpllel oyp le
A thespirse sentienfd u lfilomfte hnetr equiremefnottrsh ed egreoef
DoctoorfP hilosophy
atM asseUyn iversAiltbya,n y,
NewZ ealand
ElizabNei tvhe n
2001
MRSSEY UNIVERSITY
111111111111111111111111111 11
11216168139121
Errata
Livintgo wardd eatht:h ee ndurinwgo rko ft erminalillypl e ople
Doctoratlh esiosfE lizabeNtihv enM,a sseyU niversi2ty0,0 1
p 42K ylma& Vehvilainen-Ju(l1k9u9n7ien)nt heimre ta-analoyfst ihse
conceopfth open,o tteh aotn ea specitd entifiientd h ea rticilset sh e
distincbteitowne egne neraliasnedpd a rticulahroipsee.d
p 85' nursien'p ara2 lin3e s houlbde' nurses'.
p 109p ara2 lin1e s houlrde a'dF acticiisut sye db yH eidegg.e r
p1 10p ara1 lin1e shourleda' dT hesied eassu gge.s .t .'
p127p ara1 lin1e ( beneaqtuho tes)h oulrde a'dJ anp ortrahyesr sealsf
someonweh oi sc opinwge lwli tht hed readed cancer dainadg nosis
treatment.'
\
P 130( iqnu otel)i nes"'!h oulrde ad( Thheayv geo 8t0 mucht od eawli th
whetnh eayr dey ing.'
p 140f ootno2t7se h ould rKeaapda noals s ustainreedl eamseed ication.
p 154f inapla ral in3e d ele'tae'
p 157p ara2 lin4e s houlrde a'd. .a ndi sa nswereidnc hronos'.
P 164f inapla ral in7e d ele'tteh at'
p 187f inapla ral in4e s houlrde ad'.. a.s h ec onsiders
P 188p ara1 lin3e a ltebresc omeasl ter.
P 211p ara2 lin1e1 H ealtphr ofessiobneaclosm 'eHse altphr ofessionals'
assessmen.t ..'
p 211p ara2 lin1e3 d ele'tael l'.
p 221p ara3 lin7e ( itsh erseh'o ulbde( theirse' .
p 223p ara2 lin3e i nse'rbty b'e twe'euns e-dp rofessionals'.
p 223p ara2 lin5e d ele'tweh o'.
p 226p ara1 l in1e8 d ele'tteh em'.
FOR
RefereOnncle
y
NOTT OB ER EMOVEFDR OMT HEL IBRARY
./
LIVINTGO WARD DEATH:
theen durwionrgok f t erminialpllel oyp le
A thespirse·s entienfd u lfilomfet nhter equiremefnottrsh ed egreoef
Doctoorf Philosophy
atM asseUyn iversAiltbya,n y,
NewZ ealand
Elizabeth Niven
2001
t� MasUsneiyv ersity
..1 ..; . SchooofHl e alStchi en-ces
COu.EGE OF HUMAMTlES a. SOCIAl SCIENCES ,'� . Albany
PrivaBtaeg 1 0920 4,
NonhS horeM ailC entre,
AucklanNde,w Zealand
Telephon6e49: 4439700
Facsimi6l49e : 4 4933 72
TOWH OM ITMA Y CONCERN
Thisi st os tatteh atth er esearccahr rioeudt f ort heD octortahle sis
entitl"eLdI VITNOGW ARD DEATH:t hee nduriwnogr ko ft erminailllly
peoplwea"s d oneb yE lizabeNtihv einn t heS chooolfH ealtShc iences,
Massey UniveArlsbiatnyyN,,e w ZealanTdh.e t hesmiast erihaals n ot
beenu sedf ora nyo thedre gree.
Supervisor I"", ).'I.A , � \\ " '1
: I
:\ ·1�-;.;\ ;,...'). )
I
\ i
�I
'.
-'-\ ,t,l ,":I,-
'-I
Abstract
Thisst uedyx plotrhleeis v ed exopfte errimeinncaepl eloypu lsieil tnlhg e
personal onfpa artriaketinaintnv ,nde u sr Ssiesx.e otfsp atient-fkoirnm- nurse
thsea mpwlietd,ha tgaa inveiidan diviindtuearlvT iheeswt sui.dsgy u idbeyd
thvea luoefps h enomenoplhoigliocswaohlpi nhlayer ratthievoaers ys idsattsa
anyasliIsn.t erproeftt hadeta itoani nfiosr mbeyAd n thoGniyd desnosc'i al
constrreulcatttsomi ondge yra nnisdte lft-ii.td yen
Thed iagnoofas t iesr miilnlanle ssf oursmcuaeoajsrlc lhya nignet shl ei voefs
patiaennodtf st,pe rno vtiidmefeso r reAflltehcottuihegoexhn p.ie ernmcuesb te
individaulapslao r itat ocifos m mon human exbpeee rnireinbccyhe e dt hat may
thken owleodfog teh ersh awvhleoi ved tshirmoioulgrahdr e Yaeltts h.e
consteavnotllvyni antguo rfte h seo cainadhl e alctohn tseguxgte stthsa t the
experoifet necrem iinlalln ensesv eri s static unadnedr stthaoanftd ifnrgess h
livwiintaglh i fe-thirlelaantreeaesnl siw nangye sc essary.
Thteh eissti hsa t tloiwvaidrnedga c tahbn e s eeanst heen durwionrogkf t he
patiTehnepta .t iienrn ets,p otnoes xep eraineednv ceeno tfis l lndeesvse,la o ps
readifnoers sc vhiaaan g ep roocfce osnassn ttrleyc onsthriussce htloifondg.
Readifnoecrsh sa naglel ohwism mtaoi nthaoipdneu riunngct earinktnyo,w ing
thcahta nigcsee rtain ahnados v tehracto meh ec phraelvliIeonntu ghswei assy.
as enosfee n dursieinlcsgfr eattheiadfst u nctfioohrni amal n d khiianssd eath
comcelso Tsheiern .t errenlaattuoirfloe in vailn g toiwpsar reds edinentta hetedh
notioofnn se gotisautpipnaognr dth andionvge arn,d t heassep eacltsso
contrtiotb hupeta et ient'sse leofvdho.ol ving
The soefen nsdeu rsiendlgef v elboypt ehpdea timeanyct o ntwriatsththk e i n
andn uresxep ectwahteitnoh neasyr e workincgl otsocuwhraaerl,dl se nging
practittoi orneetnrhesefw io rc ounst hpea tiepnots'isat nidpo unt taisnigd e
alreaacdqyu iarsesdu mpotfdi yoinnsg experietnhcpeea st.isn e enSetid'm ilarly
ton egotfiosarut pep aonrdt acpapreeta oqr use sttihceoa nr iancgt ioofkn isn
anndu rasnedd,e mantdhsea xtii nsugtn derstoafnc dairnrigenslg a tiaornes hips
re-exda.mT ihnese tusdhyo wtsh atthp ea tiesnetno'sfse endurtihnagt self
develdouprsih nitgse rmiilnlahnlae tssh spe o tenttoti raaln shcidesen adat nhd,
that twhhhieasrp ep ebnostp,ha tienktia npa pnrdoh aidcseh a thr ewaidtihn ess.
11
Acknwoledgemtesn
Thiwso rikds e dicattheed ptaor t-pi-actiipeannattnssnd, u rks-iwe-nhs,o
have sthhaejruioerrdn ewyistm heb ya greteoti ankgpe a irntt hset uIditys .
aldseod ictaott herde e wpheoojspuoelr en se ye'nsdh aIra esdd a ughter,
neighabnofdur ri etnomd y f -atJhoehrNn,i v(e1n19 8-1 988t)om; y n eighbour,
AlmLao g(a91n61 19-96)a;n dm ytf or ieDnodrh,oyL t imbr(9i13c9- k199 9).
Altlh epseeo ptlaeum ghewt h at liittko le ii tsvo ew adredai tnghr aacl1ed
serenity.
Ethiacpaplr ofvoar lst thuwidasygs a inferdo mM atshseUe nyi veHrusmiatny
EthCiocmsm iatntfder eo tmhN eo rHteha lEtthhC iocmsm ittee.
Ia cknowtlhesedu gpep ooftr htFe i eldThrouuassntetd h Mea rLya mbie
scholawristhhiwophusit,tc hhsi tsu dy nwoohtua lvbdee epnos sib. le
A grafnrtot mhF ea cuolfHt eya lStchi e&n Tceec hnoUlNoIgTyEp,Cr ,o vided
writinagtt h teein modeft hper joeacnttd,h iiss acknowwiltgehrd agteidt ude.
It hamnyks upervDirJs uodhrCi sht,r istDerPn hsieClnui,lp b earntds oJDnur l ie
Boddfyogr u idasnucpepa,on rfdta iJtuhd.i etahrw'losyr h ke lped clarify the
bounodfts h set uPdhyi;l einpc'osu raagnegdme enncttrl iet hieqlupdeee dv elop
thsec holqauralloyift t hwyeo rakn;Jd u lfiierg'mus i daanttch eeen edn sured
thtahtte h ewsaicsso mplienatd eids cispplieifcqniueca lity.
It hamnykf amily, pmayrm toitchNuealrta,aNr lilivyee w nh,oh aasl ways
encourmaeg cetodon tiTnhcueae l.am s sumpotfmi yco hni ldRroebnea,rn td
KatSiteu rtchhta,htw e o rk would bwea csco onmfpilbdeuetinelcdde i ng.
Varifoaumsih layvs eu ppoirntt heeodiw rns peicacin fsdp ecwiaayalsn ,Id am
.
gratfeoftruh lec soen tributions.
Colleagfureiseh naadvnsed pbaeorefttn h jiosu rInh eayvv.ea lutehddee bate
anedn couraogfoe umre ndto scttuogdrryao bluo pta hsg roaunpad s
indiviMdyuc aollsl.ea atwgo urehksa ve aknie nptte arnebdse tli inte hfse t udy,
antdh hiasbs e ehne lpIft uhlam.ny kc olleagueisnp ailntlviicovaalerv ee d
whowsoer ikts h bea sitsh seft ourad nywd,h obseel iinte hfve a loufte h perj oect
waasl waasy tsi mtuocl uosn tinue.
WarrLeinm brhiaocsfek fr efdr ienadnscdhr iiptt ihqruoeu gthhpoeru otj ect,
eveanta t imweh ehne htaold ia vj euo rnseiym itlota hroa ftt hkei n
particHiipfsaa nittskh.e phmtaet s r tuoet hceo urse.
AlwaIyg si,vt eh antkoGs o df olri ffoefr,a iftowhro, r k.
1ll
Tabloef c ontents
Abstr.a...c...t.. .............................................................................................................................i..i... ...........
Acknowledge.m.e.n.t.s. ..........................................i..i..i.. .. ...........................................................................
Tabloefc onte.n.t.s. ...........................................'... ..........................i...v.. ...................... .............. ..................
CHAPTEORN E- THES TUDY TOPIC 1
...................................................................................................
Theh istoorfty h qeu est.i...o..n... ..........................................:.... .... ................1. ............................................
Persohniaslta onryid t isnfl uence 2
..........................................................................................................
Questioofnl si fdee,a tahn dp hilos.o..p...h..y... .......................................................................................... . 4
Beianngnd o n-b..e...i....n....g.... .........................................................................................................5....
Dying . 6
.....................................................................................................................................................
Suffer....i...n...g.... ................................................................................................................................7...
Issuoefsc onte..x...t... ................................................................................................................................9.
Thec onteoxfht e alctahr feo trh set ud..y... .............................................................................................. 01
A snapshoofct a roef t hed yinagtt heti moef t hset u.d..y... ..................................................................... 13
Partic...i...p...a...n....t...s... .............................................................................................................1...5... .
Indiviisdsuuaels 16
...................................................................................................................................
Assumpti..o...n..s.... ..................................................................................................................................1 8
Tennsa ndl anguaugseei dn t het hes...i...s... .............................................................................................2 0
Overvioefwt hec hapt.e...r...s.. .................................................................................................................2 1
Conclus..i...o...n.. ......................................................................................................................................2 3
CHAPTETRW O -ARE VIEW OFL ITERATURREEL ATETDO DEATHA NDD YING... ........2. 4
Historoivcearlv i...e...w... .........................................................................................................................2.5
Developomfte hnet hsla alfs-tc e...n...t....u...ry... .................................................................................2. 8
Moraalnp dr actiiscsiaunlte hsde e aatnhdd y ing..fi...e...l...d.... ......................................................3. 0
Fonnala cademwirci ti...n..g... ..................................................................................................................3 2
Theoarnimdeo sd els .3 4
...........................................................................................................................
Multi-diswcriiptliinnga ry . ..36
.................................................................................................................
Nursilnigt era...t...u...r..e.... .................................................... �.. ................................................. .............3 .7.
General osndt yuidnige s ... 38
............................................................................................................... ...
Nurspirnagc itnpi aclel iaanttdie vrem cianrael . .3.9
..............................................................................
Speciifiscs oufte shd ey iexnpge ri.e...n....c...e... .................................................................................. 41
Studrieelsat tope rdo vicdairnegt efromri ilnlpa altliy..e. ..n....t...s... ................................................. 43
Patiaennkdti ex np eri..e...n...c...e.... ...................................................................................................4. 5
Non-acadewmriict ianngdw ritifnogtr h ep atiaenndt lcaayr egi...v...e..r... ............................................4. 6
Persoancaclo .u...n....t...s... ..................................................................................................................4 7
Thper ofesascicoonouaftnl htp e a tiexepnetr i..e...n...c...e.... ........................................................4 ...8...
ThWeo rld-WWeib.d e ..49
............................................................................................................... .........
Thep lacoefl iteraitntu hrepe r esent ...s..t...u..d...y... ............................................................................... 50
Conclus..i...o...n.... ....................................................................................................................................5 2
CHAPTETRH REE- PHILOSOPAHNYD M ETHOD 53
.........................................................................
Philoso-pwhhya tth dei scipolfifneetr hses tud...y.. ..............................................�. ...............................5 4
Researchhiunmgae nx perie-nqcuea litraetsieveaa rncdhp henomeno.l...o...g...y.. ............................... .59
Phenomen....o....l...o....gy... ..................................................................................................................5 9
Henneneut.i...c..s.... ...................................................................................................................................6 2
Narratainvael y..s..i....s... ........................................................................................................................6.4.
Narratiavnedh enneneut..i...c...s.. ............................................................................................................6 8
Analysainsdi nterpre..t...a..t...i..o...n... .....................................................................................................6 9
Gidden's ovfih euwmsa nisns ocie...t..y... ..............................................................................................7. 0
IV
Conclus..i...o..n... ................................................................................................................................7....1..
CHAPTEFRO UR- UNDERTAKITNHGE S TUD.Y... .................................................................7...2... ..
Beginnitnhgse t ud...y... .....................................................................................................................7....2...
Appropvraolc esses. . .. .. . .. 74
.....................................................................................................................
.
Datcao llec..t..i...o...n.. ............................................................................................................................7 .. 5
Challenogfde ast cao llec..t...i..o...n.. .......................................................................................................7. 7
Communic.at.i.(J.n. .... ............................. .. . . 79
............... ........... .. ... . .. .. ..... . . ..... ..........................................
Ethicchaall ldeunrgiednsag tc ao lle.c.t.i.o.n. .................:... ..8..0.. .......... .................................................
Workinwgi tthh ed at..a.. ......................................................................................................................8....3
Dataan alyasnidsi nterpre.t.a.t.i.o.n. .....................:.. .................8..3... .................................................... .......
Thfeormaanla lpyrsoicse .s.s. .. . ... . ....... .. 84
..... .......... .................. ............. ................................................
Focuosn t hpea tieenxtpe rie...n...c..e... ...............................................................................................8....6..
Interpre..t...a..t...i...o..n... ...................................................................:..... ........ ........8.6. ................................
Introdutchiepn agr tici..p..a....n..t...s.. ....................................................................................................8...8
Conclus..i...o..n... ..................................................................................................................................9....4
CHAPTEFRI V-ET HEF ATEFUMLO MENT 95
.....................................................................................
Thes ignificoafnd ciea gno..s...i..s... ....................................................................................................9....5.
Inirteisaplo tnods iea gn...o...s....i....s.... ..............................................................................................9 7
Copibnycg r eatin...g... ....s....p....a...c....e.. .........................................................................................9. 8
Cancdeira gnaosass imsa dlela t.h .. .. . ....... ... 99
......... .......................... ...................................................
Facitnhpgeo ssiobfli olsilityifn eg . .. ..10. 0
............................................................................................. .
Ontolosgeiccu.a..r..l.i.. .ty.... .........................................................................................................1...0.. 1
Thpel aocfexe p erien.ce :. ..............................................1..0..2.. .............................................
..................
Glimpcshinaagon sdd e aJh. . . . .. 103
..........................................................................................................
Facintgh epo ssibiofld ietayt.. .h.. ..........................................................................................................1. 04
Modevrine ws . . . . . . . . . 105
............................................................................................................................
Latmeo dervniietyw s . . . . . . . 105
..................................................................................................................
Theb odyi nc ri.s..i...s... ............................................................................................�.. .......... ...............1... 06
Cridsriasaw tst enttoti hboeon d .y ... . ..... . . 107
............................................ .............................................
Questitohnbeio ndgyr 'esl iab.i..l.i.ty .......... ............. . .. 108
..... ... ............ .... ............... ......... . ......................
Acceptthibeno gd y-as-.it-i.s . . 109
.............................................................................................................
Thbeo dy-for.-...i...t...s....e...lf..............:.... ......................................................................................1...1. 0
Thbeo dy-for.-...o....t....h...e....r...s.... ................................................................................................1. 15
Copinwgi tfha tcer,i sainsda nu nrelibaobdlyie n t hem idsotfl ivi..n..g... ............................................ 119
Thes elf-narrative. . . 120
............................................................................................................................
Varyinnagr ratives . 120
............................................................................................................................
Biograpnhairrcaa.tl.i .v.e :. .....................1.2.1. ...................................................
......................................
Healntahr ra....t...i.....v...e... .............................................................................................................1.. 21
Listetnooi nnego' wsnn arrat.i.ve . . . ..:. ................1.2.3. .......................................
....................................
Narrarteiflveec. tion .. . . . ... .. 124
.................................................................................................................
Modifyipnegr sonnaarlr ati.ve . .. . ... . 126
................................................... ................................................
Co-openraartriav.tei .ves .. . . . 130
..............................................................................................................
Developfionrgt i.t...u..d...e... .................................................................................................................1.. 31
CHAPTESRI X- LIVINIGNS USPENDETDI ME ......................................................................1...3...2..
An experiewnictemh o rphi..n...e... ........................................................................................................1.3 2
Cont..r....o...l... .......................................................................................................................1...3...4... ...
Addic...t...i...o....n..... ..........................................................................................................................1 35
Bodayw arene.ss . .. . . . 137
..........................................................................................................................
Compet.e.nc.e ... . . 138
............... .................................................................................................................
Rismka nagement . 138
..............................................................................................................................
Socimaela n.i....n...g... ...................................................................................................................1...3.. 9
Persomneaaln i.ng ... . . . ... .... ... . 140
............................................................................................................
Othetrr ibula..t...i..o....n...s.. ...................................................................................................................1 . 40
Sequestorfexa pteiroine n.ce . . 141
............................................................................................................
v
Suffering 141
........................................................................................................................................ .....
Persoangaeln cy . . 143
...............................................................................................................................
Reviewing rela...t..i...o...n....s..h...i..p...s... ............................................................................................1.. 44
Relatiownistehhxi ppesr ts 144
.................................................................................................................
Relatiownistkhhii np s 146
................................................................................................................... .....
Relatiownistfhhai mpicslu yl,ta unrpdea satnf du ture .j4 8
.....................................................................
Relatiownistthhhui enp ksn own 149
.........................................................................................................
Bridginagn sdtp iamcee 151
............................................................................................................... .....
Liviinngs uspentdiemd.. e... ................................................................................................................1. ..53
Waiting 153
...............................................................................................................................................
Timaesa p henomenon 154
.................................................................................................................. .....
Timei'nfsl ueonnoc teh er phenom.ena 155
.......................................................................................... ....
Timaess elf-interpreted 156
.....................................................................................................................
Timaesm ulti-.l...a...y...e....r...e...d.... .....................................c.. ............ .......................................1...57..
Conclus..i...o...n... ................................................................................................................................1... 57
CHAPTESRE VEN- HANDINOGV ER 159
..............................................................................................
Awareneosfts h ee ndo fs uspentdeidm.. e... ..............................., . ..................1..5..9.. ....................... ...........
Thies soufde e nial 161
.............................................................................................................................
Handinogv e.r... ....................................................................................................................................1 .6.3
Allowing . 166
............................................................................................................................................
Coaching .. . . .. . . 168
....................................................................................................................................
Rehearsing . .169
.......................................................................................................................................
Explohrainndgoi vnegr . .171
...................................................................................................................
RegiamneRdso les . 172
............................................................................................................................
Narratwiovrekt oc opwei tthh ep aradooxfed sy in...g.. ........................................................................1. 73
Dependence/independence . .173
...............................................................................................................
Living/dying. . 174
.....................................................................................................................................
Hope/realism 175
......................................................................................................................................
Dependence/indferpaegnmdeennvtceaert suiaunosnin dfi cation . 177
....................................................
Livinga/ndpdyo iwnegr levsesrnsaeupssps r opriation 178
......................................................................
Hope/reaanladiu stmh ovreirtysu unsc ertain.ty 180
................................................................................
Integroafext pieorni enc.e 182
............................................................................................................ ......
Conclus..i...o...n... ..................................................................................................................................1. 84
INTERLU.D...E... ....................................................................................................................................1 ..85
Leavitnhgep a rtici..p...a..n....t...s.. ..........................................................................................................1 85
CHAPTEERI GH-TE NDURINWGO RK 186
............................................................................................
Fircshta lle.n..g...e...s.. ............................................................................................................................1 86
Copiwnigtm ho rtality . 186
.......................................................................................................................
Copiwnigta h deifrfebnotd y . 187
.............................................................................................................
Narraatsai m veea nosfc oping 188
.................................................................................................... .....
Agencayn d t.i...m...e... ..........................................................................................................................1. 89
Keepaignegn icnty h fea coefi trse mova.l . . 190
......................................................................................
Persosnuaffle ring . 191
.............................................................................................................................
Changrienlga tionships .. . .1 92
..................................................................................................................
Liviwnigt ahlitne triemde 194
..................................................................................................................
Handinogv e.r... .....................................................................................................................................1. 95
Ambiguities . . . 196
.....................................................................................................................................
Managdiincgh otomies 197
.......................................................................................................................
Growiinncg o nfidence . 198
......................................................................................................................
Identifyainno gv er-arcmheianngi fnrg otmh lei ving tdoewaatnrhad r ra.t..i...v...e... ............................ 198
EnduriWnogr k... ....................................................................................................................................1 99
Endurwionrgk . . 199
.................................................................................................................................
Thretaoot nst olosgeiccu.a.r..l.i.... ty.... ...........................................................................................1 ..99
Thceo nsrteacnotn storfsu eclfhtoioodn 201
............................................................................................
VI
,-