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VoluntaryEuthanasia:anunfamiliarpilgrimage©SandeRamageSandeRamage:[email protected]/VoluntaryEuthanasiaSociety,Wellington,22March2014

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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.


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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


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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


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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.


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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


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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.


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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.


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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.


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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.


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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.


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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.


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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.