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VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
1
Asmallskullsitsonmydesk.Ithelps
merememberthatdeathismy
beginningandmyendandateasealong
theway.Flickingmeprovocative
glancesearlyonthenkeepingher
distanceuntilnowIseeshe’stryingto
bebestfriends,intentonapartnership
becausesheismydestiny.
Weallhavearangeofdeathexperiencesthroughoutourlives,whetheractualor
metaphorical.Theyarenotmistakesornearmissesalthoughatamateriallevel
theymayseemlikethat.Takenseriouslytheycanhelpopenthegatesofwisdom
tohelpusstepdownintomeaning,ratherthanbobaboutonlife’ssurface,
subjecttochangingtides.
Meaninghasalwaysmatteredtome,
firstthroughbeingadoptedintoa
fundamentalistBaptisthomeand
thenthroughthelifelongprojectto
findmywaytofaithbeyondthe
constructionofGodfirstofferedto
me.
MeaningmattersformeinmyrolesasAnglicanpriestandhospitalchaplain,
whereIengagewithdeatheveryday.Today,Idrawfromallthatexperience,
althoughIdonotspeakonbehalfofmyemployer,theICHC,MidCentralHealth
thathostsmeasachaplainatPalmerstonNorthhospital,ortheAnglicanChurch.
Notwithstandingthat,mycontextmatters.
Likemanyofyou,Ihaveborneachildandsatbesidedyingparents,onewhohad
aprotractedjourneywithvaryingformsofcancerandtheotherwhocontracted
motorneuronediseaseinthelatterstagesoflife.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
2
Astheconversationaboutendoflifechoiceshasdevelopedithasresonatedwith
myexperience.I’venoticedasimilarinstinctiveresponsearoundtheworldas
theissuevibratesandfindsresonanceinpeople’slivesandsoIimaginethatit
onlyamatteroftimebeforeendoflifechoicewilleventuallybecomeoneofthe
optionsinNewZealand.
Aswemovetothatpointtherewillbeeruditeargumentsfororagainst,butI
don’tthinkarguingforaparticularpositionismytask.Instead,Ithinkit’stoadd
tothespaciousnessoftheconversationfromacontemporaryspiritual
perspective.
Ifdeathisourbeginningandourend,
thenitis,attheveryleast,aconundrum
thatforcesustowonder.Towonder
whatconstitutesalife,whatultimate
valuesunderpinthatlifeandthread
theirwaythroughit,andhowwemake
meaningwithinthatlifeforwhichwe
haveultimateresponsibility.
Asscientificknowledgehasexpanded,sotoohasourpuzzlinglifespan.This
createsanillusionofeternityinrealtime,althoughthereappearstobeno
consideredmeaningorpurposebehindthisachievement.Youcouldsaythisisa
convenientfictionthatreinforcestheactofextendinglife.
Immortality,themostexcellentbook
byEnglishphilosopher,StephenCave
presentswhathecallsthefourstories
thathumanshavecreatedtoavoid
death.i
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Firstthereistheresurrectionstory,whichreligionshavebeenquitekeenon.
Secondthereisthesoulstorywherejustabitofusliveson,ofteninanewform
oranewenvironment.Livingonthroughourgrandchildrenorthemonuments
webuildisthethirdverypopularlegacystory.
Thefinaloneisthestayingalivestory,whichhasmuchtodowiththeendoflife
choiceconversation.Inthisstoryweattempttostayaliveinavarietyofways,
throughcrammingvitaminsandpotionsdownourthroats,swallowingand
injectingavarietyofdrugs,havingoperationstocutouttumoursorimplantnew
partsandbeingresuscitatedtoensurewekeepbreathingandwell,stayingalive.
IntheendCaveconcludesthatnoneof
thenarrativescandeliver,whichleaves
usinsomethingofafix.Headvisesan
approachtomortalitysteepedinthe
wisdomtraditions,somethingColin
Jamieson,aMethodistministerin
Christchurchmightagreewithwhenhe
pointsoutthat‘manyhavehadtheir
livesprolongedsothattheycannolongerliveinordinarycommunitiesbuthave
tobeaccommodatedinagecarefacilities.ii
Thissituation,thatmanyofuswanttoavoid,seemstobeoneofthedriversfor
euthanasiaconversationsassomeareleftgraspingforsignificantmeaningabout
thecontinuationofourlives.
NosurprisesthenthatIwascaptivated
byHelen’sstory,onerecountedbyDr
RodneySymes,anAustralianadvocate
forphysician-assisteddying,inhisbook,
AGoodDeath:anargumentfor
voluntaryeuthanasia.iii
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Helenwas80yearsold,livingaloneinherownsmallhome,wheresheenjoyed
potteringaboutinhergarden.Shehadgivenupgolfandbridge,notbecauseshe
wasbecomingfrailbutbecauseshewaslosinghersight,whichalsomeanther
abilitytoenjoytelevision,filmandthetheatrewasgone.
AlthoughHelenhadanattentivefamilyhersenseofvalueasamotherand
grandmotherwasdiminishing,aswasherabilitytocopewithindependent
living,althoughshehadexcellentgeneralhealth.
Despiteherdaughter’sprotestations,shefeltshewouldbeaburdenandwasn’t
preparedtoenteranursinghome.Aftermuchconsideration,Heleneventually
madethedecisiontoselfterminate,somethingshehadtodoaloneforfearof
implicatingherfriendsandfamily.
Helen’sdeathwasnotimminent.Shedidnothaveaterminalillness.Shehad,
accordingtoSymes,ahopelesscondition.Butultimately,hesays,‘itisnotthe
illness,whetheritisterminalorhopelessthatmattersbutthenatureofthe
sufferingandwhetheritcanbeeffectivelyrelieved’.iv
UnderMaryannStreet’sEndofLife
ChoiceBill,thiscaseseemstofitunder
Section6(1)(ii)whereaqualifying
personmayreceivemedicalassistance
toendhisorherlifeifheorsheis
mentallycompetentandhasan
irreversiblephysicalormentalmedical
conditionthat,intheperson’sview,
rendershisorherlifeunbearable.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Acaselikethisshiftstheconversationawayfrompeopleexperiencing
unbearablephysicalsufferingandimminentdeathwithintheconstantcareof
medicalprofessionals.
Underthissection,ahumanbeingisassumedtobecompetenttounderstand
theirownsufferingandtheimplicationsofthatand,shouldtheybelievethisis
irreversible,makeadecisiontoseekmedicallyassisteddeath.
IunderstandthatthisisanathematosomebutitresonateswithmeforIlive
alone;havedoneformanyyearsandhavecometounderstandtherhythmof
that.Athome,thingsaredonethewayIlikethemtobe.Myritualsenlivenme,I
havemyfamiliarbitsandpiecesscatteredabouttohelporientmetowhat
matters.Therearemanycuesinmyhometohelpmemakesenseofmyworld.
Furthermore,mygovernmenthasrepetitivelytoldmethatbeingindependent
andtakingcareofeverythingmyselfisthewaytobe.Thisisthesocialand
politicalcontextinwhichIlive.
LikeHelen,ifIbecomefrailandunabletoliveindependently,Idonotwantto
losethatsenseofmeaningandfindmyselfinfantalisedbybeingforcedintoa
communitylivingsituation,somethingIhaverunscreamingfrommywholelife.
AsIreadHelen’sstory,IrealisedthatIwantthechoicetoselfterminatewhen
lifenolongerholdsmeaningforme.AndIwantthatchoicetobelistenedtoas
thechoiceofathinkinghumanbeingwhohasworkedhardtofigureouthowto
livewithmeaning.Idonotwanttobepatronizedbypeoplewithpowerofany
kind;includingmedicalprofessionalstellingmeIamdepressedorunableto
makemyowndecisions.
UnlikeHelen,IhopeIcanritualizetheendofmylifewithmyfriendsandfamily.
Totellstories,togivethanksformylife,todrinkaglassortwoofbeautiful
bubbly,toreadsomeofmywordsagain,theorderingofwhichhasgivenmesuch
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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joy,toblessthepeopleIloveandbeblessedbythem,andinadignifiedway,
acknowledgethatitisdone.
WhenIhavebeenexpectedallmyadultlifetotakeresponsibilityformyself,it
seemsliketheultimatebetrayalofasociety,aglaringlackofcompassiontohave
thisfinaltaskofthegreatestmeaningtakenfromme.
ButHelen’scaseandmydesiretohave
thechoicetodolikewiseisabridgetoo
farforsome.Theworryseemsto
revolvearoundthequestionofwhatwill
becomeofusifweembracetheability
ofourcommunitytoselfterminate?
Willweendupasmonsters,devouring
ourownkind,adriftintheuniversewithoutmoralcodeorcompass,lackingeven
shredsofcompassionforothersandourselves?
ColinJamiesonagain.‘Euthanasiaisabouthowandwhywedie;whatprocesses
shouldbeprohibitedormodified,butmainlyit’saboutthevalueofcompassion
andthemotivesoftheparticipants.’v
Nevertheless,major,existentialcommunityfearsneedtobelistenedto,satwith
andexplored.Inparticular,weneedtoaddresstheoverwhelmingfearthatwe
arenotenoughtocompetently,wiselyandcompassionatelymanagethecreative
lifeforcethatenergisesusforatimebeforeitslowlystartstowane.
Oncemanymighthaveappealedtoanomnipotent,externalGodorasacredtext
forguidance,butmoreoftennowtherealisationisthatwehavetotake
responsibilityforlifeanddevelopthefaithinourselvesthatwecandothiswith
compassion,love,justiceandmercy.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Butcanwelistentooneanother,respectautonomyandindividualchoiceswhilst
livinginthetensionofawidercommunity?Areweupforitandwhatifwegetit
wrong?Whatwillguideus?
Althoughwemayhavemovedpastan
overarchingreligiousmeta-narrativeor
agreedreferencepoint,oursearchfor
ultimatevaluesandmeaningcontinues.
Contemporaryexpressionsof
spirituality,althoughtheymaysound
unfamiliar,needtobetakeninto
accounttohelpilluminatethisprocess.
ANewZealanddefinition:
Spiritualitymeansdifferentthingstodifferentpeople.Itmayinclude(a
searchfor)one’sultimatebeliefsandvalues;asenseofmeaninganda
purposeinlife;asenseofconnectedness;identityandawareness;andfor
somepeople,religion.Itmaybeunderstoodatanindividualorpopulation
level.(Egan,etal.,2011)vi
OrfromtheUnitedStates:
Spiritualityistheaspectofhumanitythatreferstothewayindividualsseek
andexpressmeaningandpurposeandthewaytheyexperiencetheir
connectednesstothemoment,toself,toothers,tonature,andtothe
significantorsacred(Puchalski,etaI.,2009).vii
Theremarkablethingaboutthegrowingbodyofcontemporaryspirituality
definitionsfromaroundtheworldisthattheyallpointtoissuesofrelationship,
meaningandconnectedness.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Connectednessfeaturedinaslightly
differentwayintheNewZealandstudy‘I
wouldn’twanttobecomeanuisance
underanycircumstances,’which
exploredthereasonswhysomehealthy
olderindividualssupportmedical
practicesthathastendeath.viii
WhenIfirstreadthisstudy,Ibecameworriedaboutthetragedyofsocietywhere
theoldandfrailenteraside-stream,apparentlywithoutvalue.Meanwhile,
youngthrustersdominatethemainstreamintentonbuildingupassetsand
achievementswithinaneconomicallydrivenframework.
Nothingshouldeverdetractusfromtheneedtokeepdevelopinga
compassionatesocietysothatallpeoplewhatevertheirrace,creed,age,
orientation,abilityorotherwiseareenabledtolivelivesofdignity.However,as
readthispaperalongsidemanyotherdocuments,watchedvideosandpondered,
Ibegantowonder.
ErikEriksonwasapsychologistwho
observedaseven-stageprocesstothelife
cycle.Heheldthatintheseventhstage
fromabout65todeath,thetaskrequired
istoreflectonlife.Thereissomethingof
abalancingactbetweenintegrityand
despair,withthesignificantquestion
beingwhetherwehavelivedameaningfullife.Themajorvirtuetoemergeoutof
thisprocessiswisdom.
WiththisinmindIcouldseethattheunwillingnesstobeaburden,expressedby
somanyolderpeopleinthisandotherstudies,mighthaveadepthofwisdom
withinitnotabletobeperceivedbypeopleinearlierstagesoflife.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Forwhenthebuildingupofresourcesandachievementsisanover-riding
preoccupation,extendinglifetoaccommodateevenmoreachievementsseems
sacrosanctandrejectingit,somewhatprofligate.
However,asthisachievementphase
slows,therecomesarealisationthatour
tasksarealmostcomplete,thattimeand
circumstancecanbeseenforthe
imprisoningconstructsthattheyare,
andthatwenowsitbesidetheriver
ratherthanactivelynavigatingit.
Theriverappearstoflowmuchfasterthanwecancopewithandwemaybe
awarethattowadeinit,tocrossthisriverortostandagainstitscurrent,will
likelytakemuchmoreenergythanwecanconceiveofeverhavingagain.
Thisseemstometobeawiseunderstandingoftherhythmoflifeandoffersthe
opportunitytocastaquizzicaleyeonthewaysandmeansoftherivertraffic.
AsIreadHelen’sstory,itseemedthatasherconnectionsdiminishedalongwith
hermeaningmakingactivities,notwantingtobeaburdenbecameapositive
sacrificialmovementthatwasnosacrificeatall.Perhapsinsteaditwasachoice
toletherlifegointothestreamofthegreatergoodasshenearedthecompletion
stageofherlife.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Itappearedtomethenthatthe
parametersofthisconversationabout
euthanasiaandendoflifechoicesarea
littlenarrow,havingoftenbeenreduced
to‘simplisticlegalisticcomparisonslike
‘physician-assistedsuicide’versus
‘naturaldeath’.ix
TheMedicalAssociation,HospiceNewZealand,AdvanceCarePlanninggroups
andothersareresolutelyopposedtoanychangeinthestatusquo,believingthat
endoflifechoiceshavenoplaceinpalliativecare,evenalthoughweknowthat
palliativecareandeuthanasiacontinuetogrowtogetherinBelgium.
Positionsarebeingtakenandargumentsmarshaledasthegoalofstoppingthe
legislationorgettingitenactedispursued.Listeningcanbethecasualtyhere.
Notthelisteningforagapintheargumentsoyoucanthrowyourbestarrow
kind,butthetypeoflisteningsofamiliartochaplainsthathearstheheartbeatof
humanpilgrimage.
Wheneverachangeinsocietycalls,a
changethattearsawayatwhatwe
consideredtobeimportant,vital,
absolute,it’sneveraboutaquickdashto
theend.Instead,it’slikeapilgrimage,a
slow,painfuljourneywithblisters,
walkingalongsidepeopleyou’drather
notknowandwishwouldshutup.
Butthepointofapilgrimageisnotreallythephysical,thewalking,orthelosing
weight,orlearningtosleepinhorridpilgrimhostelswithdozensofpeoplewho
snore.Rather,it’saboutdeepeningourhumanunderstandingoflifebeyondthe
superficial.Beingopentohearingtheheartbeatthatthrobsbeyondourown.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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Ithinkthisendoflifechoicejourneythatwe’reonismorethanwinningor
losingafightaboutapieceoflegislation.It’smorethansomepeoplegettingtheir
ownwayandothersfeelingaggrieved.
Frommyperspective,thisisoneofNewZealand’ssignificantspiritual
pilgrimageswherewehavetolearntolistendeeplytoeachother.Tolistento
ourmotives,ourintentionsandourfearsaswelearntodevelopourultimate
values.
Thesevalueswillcontributetothecoreofwhatwillsustainusaswemoveintoa
newphaseofspiritualitythathasnocentralimmovablelinebutmustbefluid
andflexibletoaccommodatediverseperspectivesonwhatmakesmeaning.
Thisjourneywillstirupourunconscious,whatliesdeepwithinandbetweenus.
Itwillbepainful,forwehavetomovepastthinkingthatkeepsusimprisonedby
fearsintoadevelopingstreamofconsciousness,groundedingratitudeand
compassionwherethedignityofallpeopleisparamount,evenifthechoices
madebysomearenotwhatwemightmake.
Thankyouonceagainforyour
invitationandforbeingapeoplewilling
toexploretheyearninginhumanhearts.
AndthankyoutoMaryanStreetand
otherpoliticianswhohavebeen
preparedtoputthemselvesontheline,
alwaysaplaceofdeeppersonalcost.
iCave,Stephen.Immortality:Thequesttoliveforeverandhowitdrivescivilization,BitebackPublishing,London,2012.iiJamieson,Colin.AGoodWaytoGo:consideringmercy,self-determinationandselftermination,XlibrisCorporation,2013,p33.
VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014
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iiiSyme,Rodney.AGoodDeath:anargumentforvoluntaryeuthanasia,MelbourneUniversityPress,Melbourne,2008,p183.ivSymes,Rodney,AGoodDeath:Anargumentforvoluntaryeuthanasia,Melbourne,2008,MelbourneUniversityPress,p192-198.vJamieson,p33.viEganR,MacLeodR,JayeC,McGeeR,BaxterJ,HerbisonP.(2011)Whatisspirituality?EvidencefromNewZealandhospicestudy.Mortality,2011;16(4):307-324.viiPuchalski,ChristinaM.,Ferrell,Betty,Virani,Rose,Otis-Green,Shirley,Baird,Pamela,Bull,Janet,...Sulmasy,Daniel.(2009).ImprovingtheQualityofSpiritualCareasaDimensionofPalliativeCare:TheReportoftheConsensusConference.JournalofPalliativeMedicine,12(10),885-904.viiiMalpass,P,Mitchell,K&Johnson,M,Iwouldn’twanttobecomeanuisanceunderanycircumstances…NZMJ27July2012,Vol125No1358,pp9-19ixCarey,LindsayB.,Cohen,Jeffrey,Rumbold,Bruce.HealthcareChaplaincyandEuthanasiainAustralia,in‘ScottishJournalofHealthcareChaplaincy,Vol12,No1.2009,p11.