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FacingDeath

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Religion,CultureandSociety SeriesEditor: OliverDavies DepartmentofTheologyandReligiousStudies, UniversityofWales,Lampeter EditorialBoard: MashuqAlly ChrisArthur PaulBadham FionaBowie GavinFlood XinzhongYao Religion,CultureandSocietyisanewseriespresentedbyleadingscholarsonawiderangeofcontemporaryreligiousissues.Theemphasisisgenerally multicultural,andtheapproachisofteninterdisciplinary.Theclarityandaccessibilityoftheseries,aswellasitsauthoritativescholarship,willrecommendittostudents andanonspecialistreadershipalike.

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FacingDeath
AnInterdisciplinaryApproach
Editedby PaulBadhamandPaulBallard

UNIVERSITYOFWALESPRESS CARDIFF 1996

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TheContributors,1996 BritishLibraryCataloguinginPublicationData. Acataloguerecordforthisbookisavailablefrom theBritishLibrary. ISBN0708313310 Allrightsreserved.Nopartofthisbookmaybereproduced,storedinaretrievalsystem,ortransmitted,inanyformorbyanymeans,electronic, mechanical,photocopying,recordingorotherwise,withoutclearancefromtheUniversityofWalesPress,6GwennythStreet,Cardiff,CF24YD. CoverdesignbyJohnGarland,PentanPartnership,Cardiff TypesetbyActionTypesettingLimited,Gloucester PrintedinGreatBritainbyDinefwrPress,Llandybe

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CONTENTS
Preface ListofContributors 1 FacingDeath:AnIntroduction PaulBadhamandPaulBallard PartI IssuesRaisedbyRecentAdvancesintheProlongationofLife 2 IntimationsofMortality:SomeSociologicalConsiderations PaulBallard 3 MeasuringtheQualityofLife AndrewEdgar 4 TheLaw'sImpact MervynLynn 5 EthicalDecisionMakinginPalliativeCare:TheClinicalReality IloraFinlay 6 PastoralCareoftheDyingandBereaved HeatherSnidle 7 ATheologicalExaminationoftheCaseforEuthanasia PaulBadham 8 TheCaseAgainstEuthanasia StephenWilliams vii viii 1

29

44

64

87

101

117

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PartII TheQuestforMeaningandPurposeinDeath 9 TheNearDeathExperience PeterandElizabethFenwick 10 TheImportanceofDeathinShapingOurUnderstandingofLife AndrewEdgar 11 LifeandDeathintheLightofanEternalHope PaulBadham 12 DyingandLiving:SomeContemporaryPhilosophicalConsiderations JohnDaniel Index

133

154

168

183

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PREFACE
Theinitiativeforthisbookcameoutofaconversationbetweentheeditorsontheneedtoencouragecrossdisciplinarydiscussionbetweenthedifferentprofessional groupsdealingwithissuesconcerningdeathinoursociety.Enquirieselicitedanimmediateresponsefromthosewhoformedthecoregrouprepresentingpalliative medicine,law,socialwork,philosophicalethics,systematicandpracticaltheology.Outoftheearlydiscussionstheshapeofthebookgraduallyemerged.Other contributorsweresubsequentlyinvited. Theaimisforcontributorstotalkoutoftheirpersonalresearchandinterestabouttheissuessurroundingdeathinsuchawayastoenableothersfromdifferent perspectivestounderstandthem.Itishopedtherebytoprovide,especiallyforstudents,bothingeneraleducationandinspecialisttraining,acrossreferencebook,so thattheycanseethefieldmorewidelyandappreciatehowotherslookatthesameproblems.Itisimpossibletocovereveryaspectofsowideatopicbut,webelieve, mostofthekeydimensionsarecovered. Theeditorswouldliketoexpresstheirappreciationofthehelpandcooperationgivenbyallthecontributorsandotherswhowerepartoftheprocess.Wehaveall learnedmuchfromeachother.Alsothanksareduetothosewhohelpedgetthetexttogether,typistsandsecretariesand,notleast,theUniversityofWalesPressand theireditorialstaff. PAULBADHAM PAULBALLARD JANUARY1996

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LISTOFCONTRIBUTORS
PaulBadhamisprofessoroftheologyatUniversityofWales,Lampeter,whereheiscodirectoroftheMAprogrammeinDeathandImmortality.Hehaswritten extensivelyonthissubject. PaulBallardteachespracticaltheologyatUniversityofWales,Cardiff,withamainacademicinterestinchurchandpastoralcareincontemporarysociety. JohnDanielteachesphilosophyatUniversityofWales,Lampeter. AndrewEdgarteachesphilosophyatUniversityofWales,Cardiff.Hismaininterestisinsocialandethicalissues,includingworkingataEuropeanlevelonthenotion ofmeasuringtheindicesofthequalityoflife(QALYs). PeterFenwickisaconsultantpsychiatristattheMaudsleyHospitalinLondon,andpresidentoftheBritishboardoftheInternationalAssociationforNearDeath Studies. ElizabethFenwickiscurrentlyresearchingneardeathexperiences. IloraFinlayisconsultantinpalliativemedicineandhonoraryseniorlecturerintheUniversityofWalesCollegeofMedicinemedicaldirector,HolmeTowerMarie CurieCentre,Penarth,SouthGlamorganandchairmanoftheEthicsCommitteeoftheAssociationforPalliativeMedicineforGreatBritainandIreland. MervynLynnteacheslawatUniversityofWales,Cardiff,specializinginmedicallaw. HeatherSnidletaughtsocialworkintheSchoolofSocialandAdministrativeStudiesandPastoralCareintheDepartmentofReligiousandTheologicalStudiesat UniversityofWales,Cardiff,withaspecialinterestinpastoralcareinrelationtoHIVandAids. StephenWilliamsisprofessorofsystematictheologyattheUnionTheologicalCollege,Belfast,havingpreviouslytaughttheologyattheUnitedTheologicalCollege, Aberystwyth,andworkedattheWhitefieldInstitute,Oxford.

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1 FacingDeath: AnIntroduction
PaulBadhamandPaulBallard Deathistheoneinevitablehumanfact.Weallhavetodieatsometime.Butdeathisneversimplyabiologicalevent,thecessationofaparticularlife.Itisalwaysmore thanthat,fordeathispartofourhumanexperienceandthereforewehavealwaystotrytomakesenseofit.Thegreatabsurdity,thatwhichcrossesallexistence,is therebythegreatquestion:whatdowemakeofdeath?Thishasalwaysbeenso.Theearliestrealevidenceofhumanexistenceseemstohaveincludedsomekindof reverenceofthedead,andreligioussurvivalrituals.Cavemanwasstrugglingwiththemeaningofbeingasentientspiritwhosetimecametoanend.Andsuch questionscontinuetobeasked:howdowedeal,personallyandasasociety,withtherealityofhumandeath? Inthelatteryearsofthetwentiethcentury,however,thesequestionshavetakenonnewdimensions.Indeedwearefacingquestionsourancestorscouldneverhave dreamtof.Weareheirstotheamazingachievementsofhumanscienceandtechnologythatenablemedicalprocessestoprotectandrenovatethebody.Simplyput, manyerstwhilelifethreateningconditionscannowbemoreandmorecontrolledorovercome.Butthesehavebroughtwiththemnewethicalquestions,questionswith whichthisandsubsequentgenerationshavecontinuouslytograpple.Therearenoeasyanswersconcerningmattersoflifeanddeath.Perhapsitistruetosaythatthe newsituationisthis:havingbeensosuccessfulinsomanywaysinprolonginglife,wenowhavetofacethequestionofwhenweletpeopledie.Suchaquestionarises inmanyformsandindifferentsituations. Atthebasiclevelthereistheneedtoknowwhendeathhasoccurred.Biologicaldeathisacomplexprocessthatcantakeplaceoverquiteaprolongedperiod.Indeed itistruethatwestarttodie

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frombirth.Butitisalsoobviousthathumanscansurvivewithouttheuseofdifferentorgans.Itisalsoobservablethatpartsofthebodyceasetofunctioninthecourse ofdyingatdifferenttimes.Intheend,deathfinallyoccursonlywhenthebodyhasceasedtohavesufficientorderforenoughpartstofunctiontogetherasacoherent whole.Inotherwords,biologicaldeathisaconditionofchaos,thebreakdownofthesystem.Attheheartofthis,however,isthatwhichseemsnecessaryforanykind oflife.Theultimatepointofdisintegrationisbrainstemdeath.'Thebrainstemdefinitionofdeathassumesthathumandeathinvolvesthelossofacriticalirreplaceable systemessentialtotheintegratedlifeoftheorganismasawhole.'1 Buteventhenthisdoesnotnecessarilyhappeninaninstant.Itisalsopossibletosustainbodily activityafterthebodyceasestobeabletocareforitself.Onlywhenthetissueisirretrievablydamagedistheprocessirreversible,thoughthiswillnormallybeonlya fewminutesafterthesupplyofoxygenhasceased.Withthesophisticatedmedicalskillsavailabletous,itisincreasinglypossibletoreverseaprocesswhichonlyafew yearsago,oncestarted,wouldhavehadtorunitscourse.Theboundarybetweenlifeanddeathhasbecomeverythin. Suchasituationhashadaknockoneffect.Aspeopleapproachdeath,andmoreandmoreofthemareincreasinglyfrailandelderly,sotheprocessesofdyinghave beenprolonged.Mindandbodygenerallybecomelessresponsive.Insomecasesitwouldappearthatapersonhasenteredalivingdeath.Withgreaterpressureson resourcesforhealthcare,thereisconstantanxietyabouthowfaritisrighttokeeppeople,otherwisetotallydependent,alive.Atthesametime,risingexpectations meanthatdeathfortheyoungorcomparativelyyoungisthoughtofastragic,cuttingalifeoffshortthatcouldperhapshavebeensaved. These,then,arethequestionsaddressedinthefirstpartofthebook.Itisnotpossiblewithinthelimitationsofspacetotakeupeveryaspectortorelatetoevery concernedprofession.Thechaptersareofthreesorts.PaulBallardandAndrewEdgardiscussthesocialpressuresexertedbymodernlongevity.MervynLynn,Ilora FinlayandHeatherSnidlelookatthedilemmasandtasksfacingthreekeygroupsofpeople:thelawyerswhoareexercisedininterpretingandcreatingthelegal frameworkwithinwhichlifeanddeathdecisionsaremadethedoctorsandnursesandothermedicalstaffwhohavetheresponsibilityofcaringforthosewhoare

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dyingandthesocialworkersandcounsellorswhoworkwithindividualsandfamilieswhofacedeatheitherforthemselvesorinrelationtothosetheylove.Inallthese casesthecentralfocusisnotonthebiologicalrealitybutonpersons,peoplegoingthrough,andtryingtocometotermswith,themysteryofbeinghuman,whetheras thosewhohavetotakeprofessionalresponsibilityorasthoseforwhomitisliterallyamatteroflifeanddeath.Allthesediscussionsraisethequestionofcontrolled formsofeuthanasia.PaulBadhamandStephenWilliamspresentcases,bothfromareligiouspointofview,forandagainstthelegalizationofthepracticeof euthanasia. InpartIItheemphasisshiftstowardsthephilosophicalandreligiousissuesposedbydeathanddying.Isdeaththeend?Isitjusttheultimateabsurdity,orcanweuse ourmortalityasacreativepartofliving?Butwhatifdeathisnottheend?Perhapsthereissomethingmore,sothatdeath,inallitstragedy,isbutafrighteninggateway tosomethingelse.Shakespearetalksabout'deaththeundiscoveredcountryfromwhosebournenotravellerreturns'.2 Soisallspeculation,aguess,hazardedon faith?Oraretheresignsandsignalsthatsuggestitmaybemorethanwishfulthinking. PeterandElizabethFenwicksharewithustheirresearchesintotheexperiencesofthosewhohaveappearedtodie.Ofrecentyearstherehasbeenaconsiderable interestinthe'neardeathexperience'.Somehavefoundthisasevidenceforlifebeyonddeath.PaulBadhamdiscussesthemoretraditionalbasisforvariousreligious beliefsinimmortalityandhowtheseimpingeonanunderstandingofdeath.AndrewEdgarbasesadiscussionofdeathasgivingmeaningtolifeonthethoughtofthe GermanexistentialistphilosopherMartinHeideggerwhileJohnDanieloffersanotherphilosophicalapproach,lookingatourculturalconsciousnessofdeathandhow theeventofdeath,howapersondies,cangiveaperspectivetoaperson'slife. Allthesecontributors,whethermoredescriptiveordeliberative,gatherroundtheethicalissuesconcerningdeathintoday'ssociety.Theseareoftheutmostimportance forourfuturetogether.Someseethechoicesbeforesocietyasapossiblewatershed.Thepressurestowardsacceptingtheneedtodecidemattersofdeathaswellas lifeareseenasadangerousboundarythatshouldnotbecrossed.Others,however,recognizetheresponsibilitythatisbeing

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laidonpeopleandinstitutionsbutseeitassomethingthatmustbeacceptedcreatively.Indeedthereispromiseofanewfreedomthatcanenrichourlivestogether. Thesethingsarenoteasy.Norwillanynewsocialconsensusemergequicklyorwithoutcontroversy.Rather,wearegoingtohavetocontinuetoabsorbtechnological andsocialchanges.Whatthiswillmeanonlytimewilltell.Itwillalsodependonthoseculturalvehiclesofmeaning,ofwhichreligionhastraditionallybeenthemost important,whichinformandshapeourattitudes.Thereisasymbioticrelationshipbetweenthese.Thechangesinsocietyinfluencehowweperceiverealitywhile,atthe sametime,whatwebelieveshapeswhatwedo.Itishopedthatthesechapterswillhelpforwardthisdifficultdebatebyplacingitinacrossdisciplinaryandmulti professionalcontext.Alltoooftendifferentinterestedpartieswrestlewithsuchissueswithoutrecognizingthatothersaresimilarlyengagedandmayhaveinsightsand experiencesthatcanilluminatethesituation.Ifthisbookenablessomegreaterinterdisciplinaryunderstandinganddiscussionithasdoneitstask. Notes

1

D.LambinA.V.Campbell,DictionaryofPastoralCare(LondonSPCK,1987),62.SeealsoHon.Secy.,ConferenceofMedicalRoyalCollegesandtheir Faculties,'DiagnosisofBrainDeath',BritishMedicalJournal,13(November,1976),11878andS.B.Nuland,HowWeDie(London,ChattoandWindus, 1994).

2

HamletIII.i.

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PARTI ISSUESRAISEDBYRECENTADVANCESINTHEPROLONGATIONOFLIFE

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2 IntimationsofMortality: SomeSociologicalConsiderations
PaulBallard Weeachhavetodieourowndeath,whereverandhoweveritcomes.Noonecangothroughitwithus.Inmanywaysitisthemostprivateofallevents.Yet, paradoxicallyweneverdieinisolationbutaspartofacommunity,amemberofsociety,howeverrichorimpoverishedthoserelationshipsmaybe.Howdeathismet, understoodanddealtwithpractically,arisesfromthesocialpatternsandperceptionsthatinformthatsociety.Thedyingandthosearoundthem,family,friends,carers andothers,arepartofacommonexperienceandsharedexpectations,evenwhilerecognizingthateachpersonisaparticularcase.Throughhistoryandacrossthe world,differentcultureshaveperceiveddeathindifferentways.Thosewhoareageinganddyinghavebeengivendifferentkindsoftreatment,fromhonourto rejection.Economic,technological,politicalandsocialfactorshaveshapedthewaydeathiscopedwith.Ourownsocietyisnoexception.Indeedithasperhapsseen moreandgreaterchangesinthisareathananypreviousage. Theaimofthischapter,therefore,istoexploresomeofthewaysinwhichoursocietydealswithdeathanddying.Itisthusprimarilyanattempttoindicateissues raisedfromasociologicalperspective.Thesociologyofdeathisacomparativelyundevelopedfield,thoughthereisatpresentagrowing,livelyinterestandarapidly expandingliterature.WhatGorercalledthemoderntaboosubjectisrapidlybeingrecognizedasbeingofcentralhumansignificance.1 However,allthatcanbedone hereistopointtocertainkeytrendsandindicatesomeareasofdebate. Thereis,however,anotherconcernthatinformsthisdiscussion:

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theinterestsofpastoralcare.Thereisagrowingrecognitionthatthepastoralcareofthedyingandtheirnearestanddearestisaveryimportantdimensionofgeriatrics. Aspeoplegrowoldandgetevennearerdeath,sotheyneedthesupportofthosewho,whetherasnurses,doctors,counsellorsorcaseworkersorinamoregeneral way,asfamily,friendsandneighbours,understandsomethingofthejourneybeingundergone.Butpastoralcaremustbeinformedbysociologyaswellaspsychology. Intheprocessoftryingtoprovideaninterdisciplinaryoverview,thisbookisboundtobeconcernedwiththemajorandimmediatesocioethicalissuesfacingsocietyin thisfield.Butthesecanoccupytoomuchattentionandbedebatedwithintoonarrowaperspective.Thosewhoarehelpingpeopletonegotiatethisminefieldwith creativesensitivityalsoneedtorecognizethewidercontextagainstwhichissuessuchaseuthanasiaarediscussed.Todothisweneedsomeindicationofhowdeathis regardedinoursociety,andhowthosemovingintooldagetendtoviewtheapproachofdeath,aswellaswhatitmeanstodealwithdeathdirectlyaspatient,relative, friendorcarer. 1 DemographicChanges Peopleare,onaverage,livinglonger.Ofthisweareallaware,andithasnoneedtobedocumentedindetailhere.Forexample,in1910theaveragelengthoflifeof Britishmenwas51.5years,andwomen55.4years(notmuchgreaterthanthatforAfricatoday49.7years)by1980theBritishaveragewas73.7years,andit continuestorise.Thismustmeanaproportionateincreaseinthenumbersoftheelderly,manymorelivingwellintotheirlateeightiesandnineties.Ofdeathsrecorded in1969,29percentwereofpeopleunder65yearsofage31percentofpeopleaged6574and40percentofpeopleover75.In1987theproportionshad changed:22percentunder6523percentbetween65and7455percentover75,withanincreaseofthislastfigureof15percentineighteenyears.2 Theincreaseinlongevityisduetotwointerrelatedfactors.Mostimportantly,therehavebeenrealreductionsinthemortalityratesformothersinchildbirth,infantsand youngchildren.Theearlyyearsarenolongerahazard,eventhoughthefirstyearisstillacomparativelydangeroustime.Approximately1percentofalldeaths annuallyareofinfants,though80percentofdeathsareof

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thoseover65.Secondly,improveddiettogetherwithchangedsocialandworkingconditionshaveenabledpeopletolivelonger,andthesefactorsaresupplemented bymassivemedicaladvances,fromthecontrolofthetraditionalkillerdiseasessuchasmeasles,TB,cholera,smallpoxtotheabilitytoprovideorgantransplantsand moderntreatmentsthataretakenforgrantedtoday. Suchashiftisclearlyfundamentalbothtothemakeupofsocietyanditsstructuresandtoourunderstandingofdeath.Manyoftheimplicationswillbedrawnoutat otherpoints,buthereitisimportanttounderlineone. Death,otherthaninexceptionalcircumstances,normallycomesafterareasonablylonglife.Almostanylifethreateningsituationwillbecopedwith.Inearlier generationsitmayhavebeentruethatdeathwasaconstantthreat,adreadedvisitortoeveryhousehold.Thiscertainlydidnotmakegriefanylessreal,butdeathwas anormalpartofexistencetobeacceptedwithpatience.3 Inoursituation,however,deathbeforetheduetimeisallthemoredifficulttodealwith.Thedeathofa child,forinstance,iscomparativelyunusualandthereforehardertoaccountfor.Thereisoftenafeelingthatitcouldhavebeenprevented.Resentmentandangerare directedagainstthosewhoshouldhaveknownwhattodo.Inalitigioussocietythereisamorereadyrecoursetolaw.Itmust,however,bewonderedifthesocial condoningofsuchemotionsisbeneficialandpreventsahealthyresolutionofthegriefprocess.Thisisnottodenythelegitimacyofapportioningblamewhereitis clearlynecessarybutgriefalsorequiresthepossibilityofreconciliationandacceptance.Longlegalbattlesandmediahypedonotalwaysseemtherapeutic.Emotional reactionstoearlydeathfocusonwhatmighthavebeen,thelostyearsandtalent.This,too,makesithardertoshutthedoorcreativelyonthepast.Eventhosewhodie soonafterretirementarethoughtofasdyingyoung.Retirementitself,givenpresentdaynormallifeexpectancies,isthoughtoflessasareliefafteryearsoftoilthanas anewfuture,anextendedperiodofselfmotivatedactivity.4 Theresultistopushdeathmoreontothemarginsofsocialconsciousness.Itisthere,butonlycomeslater.Itistherebutnotoftenencountered.Manywillnotcome intoclosecontactwithdeathuntilearlyadulthood,andeventhenitisthedeathofgrandparentsorevengreatgrandparentswhomaywellhavebeenfairlydistant figures.Deathisonlyexpectedasthefitting,ifnecessary,endofa

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longlife,indeedwhenonehasbecomefrailandinactive.Thusdeathisoftenregardedasamercifulreleasefromstrugglingon.Inanycase,itseemstobeassumed,the oldergenerationhashaditsdayandisnolongeranactivepartofsociety.Deathiswhathappenstomarginalizedpeopleonthemarginsofsociety.5 2 TheMedicalProfessions Inevitablythemedicalprofessionsareinvolvedinthematterofdeath.Ontheonehand,theyareinchargeofmostoftheinstitutionalstructuresthatcareforormonitor thosewhoaredying.Ontheother,theyarethosewhomakeavailabletothepublicthebenefitsofmodernmedicinewhichhasdonesomuchtoextendlifeand improveitsquality.Anumberofpointsneedtobebrieflynoted. First,theverysuccessofmedicinehasbroughtitsownproblems.Modernsocietyseemstohaveaninnatebeliefinthepowerofscienceandtechnology.Doctors, especially,areregardedaspartofthatlite,membersofwhatLangdonGilkeycalled'priestsinwhitecoats'.6 Thisputsanenormouspressureontoaprofessiontolive uptoexpectationsorlosepublicstatus. Secondly,andconnectedly,themedicalprofessionssitonthefrontiersoflifeanddeath,butthecommitmentistocureratherthantocare.R.A.Lambournehas pointedoutthatthecuttingedgeofmedicalservicesisatthepointofhightechnology,specificdiagnosisandclear,positiveoutcome.7 Theidealfigureisthesurgeon. Thereis,therefore,astrongpulltowardsthecurativemodel.Thisiscaughtbyotherpartsofthemedicalworld.Nursing,forinstance,whilecommittedtocaring,isstill primarilyfocusedongettingpeoplebetterandsendingthemhome.Toadmitthateffectivetreatmentisnolongerpossibleissomethinglikeadmittingdefeat.Itisthus tooeasytosetasidetheincurableanddyingasofnoimportance,thusfurtheringtheir'socialdeath'.Overthepasttwoorthreedecades,however,thecaring dimensionhasbeguntobetakenseriously,notleastthroughthepioneeringactivitiesofthehospicemovement.Palliativemedicineisnowarecognizedelementonthe medicalcurriculum.Yetitisstilltruethattheoldmodelsarestronglyentrenched.8 Thirdly,partofthisdilemmahasbeentheincreasinglytechnologicalnatureofmedicine,notleastinthoseareasthatmostaffect

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theelderlyanddying.Methodsoflifesupportandthemeansofrecoveryfromradicalsurgerydemandhighlycomplicatedmachinery,towhichthepatientisvariously andfirmlyattached.Thiscertainlycancomebetweenthepatientandotherpeople.Itcanalsohavetheeffectofreducingthepatienteffectivelytoamachine.Indeed, intheextreme,butforcomparativelyfewpeople,lifeofanysortisonlypossibleonthebasisofvariouslifesupportmachines.Apartfromanyquestionsaboutcontrol overthesepiecesofequipmentandwhoswitchesoff,whichwillbeconsideredinotherchapters,thereisalwaysadepersonalizingeffect,enhancingdependencyand inhibitinginterpersonalrelationships.9 Fourthly,however,itisperhapssimplythefactofinstitutionalizationthatposesthebiggestproblem.Itistruethatwearenowmorescepticaloflargeinstitutions,butit isstillthecasethateconomiesofscalecanmakelimitedresourcesavailabletomorepeople.Highlysophisticatedequipmentcanonlybemanagedthroughahospital. Equally,forinstance,expertorintensivenursingcareismoreeconomicallyprovidedthroughinstitutionalmeans.Butlargeandbusyorganizations,especiallyiftheyare managedandjudgedinmarkettermsofquantativethroughput,tendtodehumanize,demandingfromalreadyvulnerablepeople,includingtheelderly,dependencyand helplessness.Itisalsomoreefficienttobringtogetherthosewithcommonneeds.So,forexample,longtermelderlypatientsarefoundontheirownwards,cutoff fromotherkindsofpatient,withonlyeachotherascompanions,whichcompoundstheproblemsofsocialisolationandmarginalization.Moreover,moraleofstaffand patientsisimportant.Suchlongterm,oftenunrewardingformsofcaringcanbeverydemoralizing.Toooftensuchroutinetasksareallocatedtothoselesshighly skilled.Tomaintainprofessionalstandardscallsforhighlevelsofcommitmentanddedication.Also,evenwhereitisexpected,asitmustbeinsuchanenvironment, deathisseenasanecessaryevil,notsomethingtobetooopenlyacknowledged,butcoveredupandpushedasidelestothersbeupsetanddepressed.10 Themedicalprofessions,throughtheirskillsandthestructuresofmodernmedicine,are,therefore,caughtupinandcontributetotheshapingofmodernattitudesto death.Deathisindeed'thelastenemy',butthatmakesitallthemoredifficulttohandlethatrealitypositivelyandcreatively.

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3 TheNuclearFamily Britishfamilypatternsareverycomplexandtakemanydifferentforms.11Butthepredominantmodelisthatofthenuclear,oneortwogenerationhousehold especiallyifwealsoincludesingleparentandsinglepersonhouseholds.However,withanageingpopulationthereareadditionalcomplications.12 First,theretiredthemselvesconstitutealargeproportionofsuchhouseholds.Indeedmostretiredandelderlyliveintheirownhome.Muchofthecareoftheelderly, reinforcedbythepolicyofcareinthecommunity,isprovidedthroughsupportforthoselivingaloneorasagedcouples.Thisbecomesincreasinglydifficultasthey advanceinyears.Ithasalsotobenotedthattheelderlytendtobeamongthepoorestinsociety.Manyretiredpersonsarelivingoffmodestfixedincomeswhichmay bedecreasinginvalue.Manyareonstatepensionswhichoftendonotmeetbasicneeds.Theyare,therefore,alsoataconsiderablesocioeconomicdisadvantage, havingnoeasyaccesstotransportandbeinginadequatelywarmedandfed. Secondly,thenuclearfamilyismuchmoremobile,movingtofollowworkorotherdemands.Thishastheeffectoflooseningthetiesoflocalcommunityandscattering thewiderfamily.Communitieswhereadultchildrenlivewithinablockortwooftheirparentsarefewandfarbetween,andbecomingrarer.Siblingsfollowtheirown separatecareers.Middleclassparents,especially,arealsomorereadytomoveatretirement,oftenintoapleasantareaaswellassmallerpremises.Therearesome areas,notablycertainseasideresorts,wherethepopulationoftheelderlyhasbeguntoputstrainsonthesocialservices.Thisisanotherexpressionofthestratification ofurbansocietyandtheisolationofparticulargroupsinthatsociety.13 Italsomeansthatresponsibilityforcaringforelderlyparentsbecomesmoredifficult.Distancesmakerealisticcontacthardtomaintainoronesiblingbearsthebrunt oftheresponsibilityortheymoveintooneofthechildren'shomes,puttingalltheresponsibilityonthatparticularnuclearfamily.Itisstilltruethatmostofthecaregiven totheelderlyisdonethroughthefamily.Neverthelessthereisanincreasingneed,especiallyforthefrailelderly,tobegivenspecializednursingprovisionorsheltered accommodationinpurposerunhomes.Decisionsonthesematters

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arenotlightlytakenbut,inevitably,entryintoanoldpeople'shomeisyetanothermovewhichmayfurtherweakencontactswithfriends,familyandneighbours. Thereisanotherchangeinthepatternoffamilyrelationshipsoccasionedbyincreasinglongevity.Thenormalcyclehasmovedfromthreetofourgenerations.So, insteadof45yearoldchildrenlookingafter65yearoldparents,therearemore65yearoldslookingafter85yearolds.Moreover,thenewresponsibilityoften comesjustatthatpointwhentheyoungergenerationthemselvesbecomegrandparents,havingcompletedtheirowncycleofbringingupchildren,managingacareeror workingtokeepthefamilyandpayoffthemortgage,andmightreasonablyexpectcomparativeleisure. Allthishastheeffectofisolatingpeoplefromtheirnaturalandsociallinksjustatthepointofvulnerabilityandfailingpowers.Theprocessofageingandapproaching deathisincreasinglydivorcedfromthecontextofwherelifehasbeenlived.Thereis,here,theimportantconceptof'socialdeath'thatis,aprocessofdetachment fromthecommunitywhichendsupwithisolationoreffectivedeath,evenifthepersonisstillphysicallyalive.14Itis,atonelevel,anaturalprocess,foraswegetolder andpowersfailandwewithdrawfromdifferentactivities,ourworldgrowssmaller.Theclassicimageisoftheelderlypersonwhoisnowonlyaspectatorbutwhocan stillbepartofthecommunitybywatching,commentingandsometimesmanipulatingthingsgoingonaround.But,itcanbeargued,muchinmodernsocietyaccelerates andaccentuatesthis'socialdeath'astheelderlyareincreasinglycutofffromfamilyandtheneighbourhood.Also,theyareencouragedtolive,playandsocialize togetherintheirownclubsandinstitutions.Thisismorestronglyseenwhenlivinginahomefortheelderly.Indeeditisapparentthat,eventhere,astratificationoccurs andtheactiveshuntheinactive,whoaremoreandmoreleftaside.Thefinalstageishospitalization,whichcanlastmanyyearsandisevenmoreisolating.15 Death,inthiscontext,becomesincreasinglyanonymous.Insteadofhappeninginthemidstofdailyliving,itbecomesaspecialevent.Adeathinthefamilycanhappen faraway,detachedfromanypartofone'sowncurrentfamilylife.Tobecalledtothesideofadyingparentoftenentailsbreakingupfamilyroutine,abandoningwork andstayinginastrangeplace.Frequentlydeath

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hasoccurredbeforearrivingatthebedside.Funeralsalsohavetheirartificiality.Wakesandweddingsaretheonlytimewhenthefamily,orclan,appeartogether.They meetasstrangersnotknowinghowtoreacttoaneventinwhichtheyhavehadlittlepartandwithwhoseritualstheyarenotfamiliar.Thosewhomaybecaughtupin thesituationascarersdoctors,clergy,socialworkersthemselvesareatthispointmarginal,onlyusefulinaformalsenseandexcludedoncedeathhasoccurred. Theimpressionshouldnotbegiventhatthemajorityofpeopledieforgottenandneglectedbyfamilyandfriends.Thefactisthatmostpeopleadaptwellandcreatively tochangingcircumstancesandtakefulladvantageofthedifferentopportunitiesaffordedtoday.Themajorityofelderlypeopleareverymuchpartoffamilyand communitylife.However,itisstilltruetosaythatcertainstrongsocialpressuresareobservablewhichpeople,intheirownpersonalcircumstances,havetotakeinto account,accept,counterormanipulateastheycan. 4 ThePublicFaceofDeath Theeffectsofthemedicalandfamilystructuresforsociety'sperceptionofdeathhavetobeputintoawidercontext.Themarginalizationandprivatizationofdeathhas alsobeenreflectedinandreinforcedbycontemporaryfuneralpractices.Theseareinevitablypartofaneverchangingpattern,handeddownfromprevious generations,yetalsoclearlyreflectingandreinforcingcontemporaryperceptions. Thehistoryofthemeaningofdeathandthewaythedeadaretreated,rememberedanddisposedofisnowanimportantstrandofsocialhistory.Thepioneeringwork ofscholarssuchasAris,whosemonumentalstudytookinthesweepofEuropeanhistory,hasstimulatedfurtherstudiesandcontroversies.16Itistooearlyto suggestthatabroadconsensusmaybeemerging.Rather,thetendencyisformoredetailedstudiestosuggestthatthewholematterisfarmorecomplexthanwasonce assumed,andthatgeneralizedstatementsaboutpastattitudesmustbetreatedwithcaution.Evenso,whilerecognizingthattoday,asinthepast,thereisareal pluriformityinsociety,itispossibletosuggestcertaindominanttendencies. First,mostdeathsdonotoccurinthehome,thoughthatmaybe

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reversing,withmoreemphasisoncareinthecommunityanddomiciliaryhospicecare.Butevenwhendeathisinthehome,thebodyisseldom(thoughtherearereal exceptions:seechapter6)preparedandlaidoutinthehouse.Nor,exceptincertainmoretraditionalcommunities,arefuneralsconductedfromthehome.Thebodyis normallypreparedandlaidoutatthefuneraldirector'spremises,usingthechapelofrest.Thosewhodieininstitutionsaremovedtothemortuaryand/orfuneral parlourassoonaspossible,sometimeswithoddconsequences.Undertakersworkinrelationtostatutoryregistryareas,anditisnotalwayssimpleorcheapto transfertheburialto,forexample,thedeceased'sfamilyhometown.Theceremonywillthereforenormallybeheldeitherinachurchoratthechapelofrestorinthe cemeterychurch,with(forinterments)acommittalatthegraveside.Indeed,withincreasingfrequency,thereisnoreligiousrite.Specificallynonreligiousritesare beingintroducedintowhatisthelastbastionof'socialreligion'.17 Further,thereseemstobeagrowingtendencytoseparatethedisposalofthebodyandthecommemorationoflife.Thememorialservicehasbeennormalfor'the greatandthegood'.Now,however,itisnotunusualfortheburialtobeseenasasmall,privateaffair,whileinvitingthewidercirclesoffriendsandcolleaguesto anotheroccasion.Itisalsoprobablytruethatthetraditionalwakefeastisindecline. Similarlythereislessevidenceofcommunalcustomsinrelationtoadeathintheneighbourhood.Curtainsarenotdrawn,nordopassersbypauserespectfully.The funeralmaydrawacrowdforsomeonereasonablywellknowninthecommunity,butitiseclectic,drawingpeoplefromthevariouscircleswithwhichthedeceased wasassociated,butwhichmayhavenootherconnectionthanthat.Manycomingtoafuneralmaynotbeknowneventothefamily.Converselytheobsequiesfor someonewhodiesawayfromfriendsandfamilycanbeaveryemptyandsadaffair. Againmourningritualshavebecomemoreandmoreattenuated.GonearetheelaboratedressandgradedrestrictionsoftheVictorianmiddleandupperclasses.Itis oftenclaimedthattheritualizationofgriefisbeneficial,butitmayalsobetruethattheoveremphasisonritualcaninhibitthegriefprocessbyitsrigidityandthe prolongedseparationofthebereavedfromnormalsociety.Perhaps,however,thecontemporarytendencytowardscasualness

Page16

andfreedomhasitsowndrawbacks.Many,boththebereavedandothers,telloftheiranxiousembarrassmentbecausethereisnownoframeworkofetiquetteor processofresocialization.18 Thislackhas,tosomeextent,beenfilledbythefuneraldirector.Dyingandthehandlingofdeathhavebeenprofessionalized.Itisthefuneraldirectorwhocontrolsand conductstheofficialexpressionofmourning,offeringacompleteservice,lookingaftereveryaspectoftheoccasionotherthanthedisposalofthewill.Indeedthereare manydifferentstrandsthathavetobebroughttogetherinanormalfuneral:frompreparingthebodyandobtainingadeathcertificatetobookingthegraveor crematorium,arrangingtheserviceandprovidingtransport.Thiscouldputconsiderablestrainonthefamily,especiallysincetherearenowseldomthoseinthe community,likethosewhousedtolayoutthebody,ortheparsonorfamilydoctor,whocanbeautomaticallycalledin.Themodernfuneral,however,isasmooth, painlessandefficientorganization.Stressis,asfaraspossible,reducedanddeathmadeasundisruptiveofdailylifeaspossible.Themournersarenowclientsbeing takenthroughawellrehearseddramawithoutanyembarrassinginterruptions.19 Thistendencytosmoothoverdeathisfurtherenhancedbythepresentationofthebody.Eitherthebodyisnotseen,beinginacoffin,orifthebodyislaidoutfor viewingitismadeaslifelikeaspossible.Thishas,ofcourse,beentakentogreaterextremesinsomeAmericancircles.20 Thereis,however,anothereffectofthefuneralpackage.Itssmoothexteriorcancoveroveranumberofveryrealtensionsbetweenthemedical,legal,religiousand personalconcerns.Thiscomestothesurfacemoreclearlywhen,forexample,thegriefofthefamilyisdeepenedbytheneedforapostmortemorwhenthereligious customsofthefamilytraditionexpectcertainritualstobeperformedorwhenorgansaregivenfortransplants. Thislastpointisofsomeinterest.Theadvanceofmedicalsciencehasincreasedthedemandfordonatedorgans,andthereisconsiderablesocialpressure,for example,forpeopletocarrydonorcards.Little,however,seemstohavebeendonetoexplorethepsychologicalandsociologicalrealitythatthesedevelopments encourageorreflect.Forinstance,itwouldseemtoreinforcethetendencytoassumethattheprolongationoflifeisanunqualifiedgood.Atthesametimeitis discussedintermsofthequalityoflife

Page17

enjoyedbytherecipients.Gratitudeisoftenexpressedforthedenotedorgan.Butwhatdoeshavingatransplanttellusaboutourselvesaspersons?Whatarethe motivationsforbeingwillingtogiveanorgan?Isthereanewsense(somewhatsimilartomanyearlyandtribalsocieties)thathumanworthandevenimmortalityis foundinphysicalcontinuity? Further,burialgrounds,especiallyinurbanareas,aredetachedgardens,oftenontheedgeofthetown.Thechurchwithitsfamilyvaultsorfamiliarchurchyardforming partofthelivingcommunityareseldomanylongerused.Increasedpopulationandtheneedforproperhealthregulationsforcedchanges.Butmoderngraveyardsare individualized,personalplots,markedbyacarvedstone,andoftenneglectedwiththepassingoftime,asfamiliesarescatteredabroad,orcaredforbythelocal authority.TheclassicexampleisKarlMarx'sgraveinHighgatecemetery.HewasburiedinanormalgraveinacemeteryonthefringeofVictorianLondon.Only later,whenhisfollowerswantedtomarkthespotinasuitablewaywasthegraverescuedfromobscurity.Thisistakenastepfurtherbythevastwarcemeteriesof Europe.Deathisevenmoreanonymousandevenmoreentirelyindividual. Moreover,thegrowingtendencytousecremationforthedisposalofthebodyalsoaffectsattitudestodeath.Itunderlinesthefinalityofdeathphysically.Forthose whobelieveinlifeafterdeathitsuggestsasharperdistinctionbetweenthebodyandthesoul.Faithsthatstresssomekindofresurrectiontendtoresistcremation. Also,withcremation,memorialsarelessobtrusiveorevennonexistent.Oftenarestingplaceismarkedbyatree,ortheashesarescatteredinagardenofrestorata favouritespotathomeorinthecountry.Thereisagrowingmovementtolinkthedisposaloftheremainswiththenaturalcycleinnaturereservesorpublicgardens.21 5 TheShadowofDeath Perhapstheparadoxofourtimesliesinthecontrastbetweenthewaydeathishandledsociallyandthefactthatweliveinthemostdestructiveanddeathconscious centuryinhistory. ItishardtooverestimatethetraumacausedbytheFirstWorldWar(191418).Awholegenerationofyoungmenwasdecimatedinthegruesomemudbathofthe trenches.Suddenlyacivilization,

Page18

apparentlyatitspeakofcultural,politicalandeconomicachievement,wastearingitselfapart.War,tillthen,hadbeengloryonthefarflungboundariesofEmpire,part ofthepricetopayforfurtheringthecauseofcivilization.Athomeprosperityandscienceweredrivingawaytheravagesofpoverty,surelyifslowly.Theyears1914 18sawanationcaughtbetweentheneedtoseethewarasacrusade,guiltyandstunnedbythewantondestructionandyetneedingtosalveitsnationalpride.The impactoftheexperienceiswitnessedtobytheinnumerablewarmemorialsandtheritualsofRemembranceDay.Yetitalsotoreaholeinthecommonassumptionsof religiousbeliefandpracticeandsocialstructures.Therewasaresolutionthatitshouldneverhappenagain.22 Theshadowofthateventisstillverymuchwithus,evenifitisfading.Nothingsincehashadsuchaformativeinfluenceonthenationalpsychethoughthe193945 warhasasimilarplaceintheheartsofJewsandRussians.TheSecondWorldWarneverrousedtheintensityofanxietyandshockofthefirst.Whathasbeenmore importantforrecentgenerationshasbeenthethreatofnuclearannihilation.ThemushroomcloudsofHiroshimaandNagasakihaveloomedovertheworld.Forforty yearsthestandoffbetweenEastandWestthatwastheColdWarpoisedtheworldabovetheabyss.Insuchasituationnooneisimmune,andtherearesignsthat almostallpeoplewereinsubtlewaysaffected.Anxietycanstimulateanactivereaction(CNDetc.)orbesuppressed,enablingpeopletolive'normal'lives,orbe brazenedout,acceptingthepotentialuseofsuchweapons.23 Morerecentlytherehasbeenafurthershift.SincethedemolitionoftheBerlinwallanuclearholocaustmaybelessofapossibility(butithasnotgoneaway).Instead otherformsofmassdeathhavecometothetopoftheagenda.Thesehavealwaysbeentherebutnowareseeninadifferentframeworkinamorecomplicatedworld. Warisstillwaged,suchastheFalklandscampaignandOperationDesertStormcivilwarsrumbleonintheBalkansandformerSovietUnion,southeastAsiaand Africahumanandnaturaldisasterscausecountlessdeathsthroughfamine.Signsofhopeandpeaceareconstantlyovertakenbyfurthertragedy.Itisasthoughthe fourhorsemenoftheApocalypse,war,disease,famineanddeath,wereridingthroughtheworld.24 Yettheambiguityremains.Itispossibletodistanceourselvesfromallthis.Inasensethatisinevitable,sinceinmostcasesthere

Page19

islittlethatcanbedonedirectly.Itisalsodepersonalized,transmittedthroughthemedia,whichmayofitselfaddtothatindirectnessofcontact.Overexposuremay evenhardenthesensibilities.Itis,however,surelynotpossiblefordeathsopresentedentirelytobesetaside.Perhapsweoughttorediscoverthevirtueofthe mementomori,torememberthatin'themidstoflifeweareindeath')andtoacknowledgemorereadilyoursolidaritywithotherswithwhomwesharelife's insecuritiesanduncertainties.25 6 TheJourneytoDeath Allthathasbeensaidsofarhasbeenanattempttosuggestsomeoftheissuesthathelpuscharacterizetheperceptionofdeathincontemporarysociety.Itwould seemthatthedominanttendencyisnot,asGorersuggests,tosuppressaknowledgeofdeath,makingitataboosubject,butofprivatizingdeath.Dyingisnotpartof thecommunityexperiencebutisverymuchapersonalexperience.Thisisareflectionofmuchofthecontemporarylifestyle,inwhichpublicandprivateareclearly separated,andthepersonalisintheprivatesector.Thenaturalandproperindividualdesiretopostponedeathhasalsobeenstrengthenedbythesuccessofmodern medicineandsocialwelfare.Itisagainstthisbackgroundthatpeoplehavetobegintofacethepossibilityoftheirowndeath.Thetaskinthissectionistobegintotrace someofthewaysinwhichthisisexperienced. Formany,deathbecomesaconsciouspossibilityinhavingtofacethediagnosisofadiseaseortheacceptanceofaconditionthatcannotbereversed,suchascancer orAids.Some,ofcourse,willfacesuddendeath,forwhichtherecanbenopreparation,throughaccidentorothercause.Most,however,willfindthemselves recognizingthatlifeismovingonandthatthefutureisgoingtobeshorterthanthepast.Itmaybeatthepointofretirementorintherecognitionthatphysicalpowers arefailing.Ofcoursedeathistheendofeverylifeso,inarealsense,thepreparationfordeathisfrombirth.Butforourpurposesattentionisdirectedtothelater years,whenthethoughtofdeathbeginstobecomepartoflifefromretirementatsixtyfiveformen(andsoonforwomen),acceleratingasonebecomesincreasingly elderly. Muchhasbeenwrittenaboutreactionstodeathandapproachingdeath.ElisabethKublerRosshasbeenapioneerinthefield

Page20

and,althoughherworkhasbeenmuchdebatedandcriticized,shecanstillprovideabasicframework.Sheoffersafivestagemodelforthepersonaljourneytowards death.Itmustbeemphasized,however,thatwhilesuchamodelsuggestsasequence,andthereisclearlyanexperienceofprocess,itcannotbetakenasnecessaryor inevitable.Eachperson'spilgrimageisuniqueandmayexpressoneormoreofthe'stages'.Theinteresthereistosuggestthatsuchamodelsetsoutattitudesthatcan bewidelyfoundinthosewho,bygrowingolder,arefacingdeathasafactorindailylife.Thecircumstancesofherpracticehavebeeninthehospital,workingwiththe terminallyill,wheredeathisimminent.Sheisalsoworkingwithapsychologicalmodel,anditisinpsychologythatmostworkinthisareahasbeendone.Itis, however,possibletouseiteffectivelyinawidersocialcontext,applyingitoveralongertimescaleandasawaytoindicatesocialtrends.26 Thefirststageorlevelisoneofdenialandshock(characterizedas'Notme?').Thiscan,inthemedicalcontext,includeaflatrefusaltoacknowledge,forexample, whathasbeensaidbydoctorsorthehopethatthediagnosisiswrongorthatitwillturnoutdifferentinthiscaseorperhapstherewillbeamiraclecure.Thisstage, however,canbeginalongwayback,wellbeforeanyfinaldiagnosis.Inrelationtoillnessitispossibletoputofftheevildaybydenyingthesymptomsorbattlingon despiteclearproblems.Failingpowersarenotacceptedsothereisarefusal(e.g.)touseahearingaid,ortoborrowlargeprintbooks,ortoacceptthatitisnolonger possibletoplaysportatacertainlevel. Atthemoregenerallevel,retirementoracertainbirthday,forinstance,canmakeonerealizethattimeismovingon.Yetthereisnoneedtoacknowledgethefactwhile facultiesarestillreasonablygood.Deathcanbeputoffforawhileyet.Thereisnovirtueingivinginandbecomingmorbid.Suchanattitudeisbothreasonableand natural.Sooldagecanbeatimeofadjustment,theopeningupofnewopportunities,thediscoveryoffreshtalentsandtheacquiringofnewskills.Advantagecanbe takenofmedicalandsocialaids.Theeffectsofdegenerativediseasecanbecounteredbysurgeryordrugs.Despitethegradualclosingofthehorizonsitisstill possibletomakesomethingoflifeandtoremainpositive.27 Thesecondstageorlevelisanger(characterizedas'Whyme?').Forthosewhohavebeentoldtheyhaveanincurabledisease,thisisamostnaturalreaction.Itfeels asthoughonehasbeensingled

Page21

outwhileothersremainfree.Itisimpossibletodenyreality,butonefeelsrejected,discriminatedagainst.God,theworld,society,everyonecanappearunfair.Itdoes notmakesense.Thetemptationisthentofindreasons.'WhathaveIdonetodeservethis?'Diseaseanddeathhavebeencloselylinkedwithevilandsalvationin almosteveryreligion.Thisissoingrainedthatsecularpeoplealsosharethefeelingofguiltanddisfigurement,ofbeingdifferent,rejectedandhelpless. Forothers,forwhomtheprocessisperhapsmoredrawnout,angercomesoutlesssharplyasafeelingofresentment.Thereisakindofbankedupfiresmouldering within,whichpermeatesandaffectslife:resentmentatfailingpowersofotherswhocanstillparticipateinwaysnolongeravailabletousofthosewhohavecertain advantagesinhealthcareorbetterfacilitiesormorecaringfamilies.Thiscanbeexpressedthroughadoggeddeterminationtocarryon,defyingtheadviceofdoctors andfamilytoacceptgrowinglimitations,orinasouredbitternessthatcannotacceptreality. Thethirdlevelisthatofbargaining(characterizedby'PerhapsmebutifI...?').Perhapsitispossibletogetoutofthebindbystrikingabargain.IfItakemy medicine,keeptomyregime,perhapsIcanhaveareprieve?Orconversely,ifcertainfavoursaregranted,theninreturncertainobligationswillbeundertaken.This, too,isafundamentalhumanattitude.Ithasitsrootsinmutualresponsibilityandsharedliving,butiteasilybecomesakindofblackmailorabjectsubmission. ReligiouslyitcomesoutintryingtoplaygameswithGod,whoisobligedtorewardgoodbehaviour.Itcanbeseeninthosewhoturnamedicalregimenintorigid ritual,offeringtheiractionsasakindofsacrificialliturgy. Theaimcouldbesaidtoputthebrakeontheprocess.Bymaintaining,forexample,regularexerciseorkeepingtoasocialroutine,shopping,visitingtheOAPclub, havingteawithfamilyorneighbours,thereisasenseofachievementandameasuredsetofdemands.Ofcoursethereisreasonandsensehereinsustainingactivity andsocialcontactsaslongaspossible,buttherecanbeafalsesenseofsecurity,adenialofwhatisreallyhappening. Thesethreeattitudesare,eachintheirownway,defiant.Thewilltolifeisastrongpositivehumaninstinct.Withoutittherewouldbenostruggletoovercomedisability ordisaster.Thedifficultyistorecognizeandacceptthatdeathisalsopartoflifeand

Page22

shapesandformsourselfunderstanding.Therecomesapointwhen,asitwere,thereisanecessarychangeofkey,whentheshadowofdeathisacceptedintothe themeoflife.Manymaynevergettothatpoint,andremaindefianttotheend,eventothepointofbeingcrushedanddestroyed:
Donotgogentleintothatgoodnight, Oldageshouldburnandrageatcloseofday Rage,rageagainstthedyingofthelight.(DylanThomas)

Others,however,finditpossibletomovetowardsdeathinamorepositiveway:'Donotdespisedeath,butbewellcontentwithit,sincethistooisoneofthosethings whichnaturewills'(M.Aurelius).Formostofus,though,thisisahardanddifficulttransition,noteasilyorwillinglyundertaken.28 Sothefourthstageorlevelisdescribedaspreparatorydepression(characterizedas'Right,comeonthen,itsme').Theacceptanceoftherealitydoesnotnecessarily bringpeace,butitcanbringdarkness.Hereisafinalitythatcannotbeavoided.Allthathasmadelifeworthwhileistobetakenaway.Wearestripped.Itisan acceptanceofresignation.Itispossibletorecognizesuchadispositionquitereadily.Itcanbeaccompaniedbyapathyandinertia.Familyandfriendsmaybeignored, andnecessarytasksseemtoomuchtrouble.Ifthereisanymessitcanbeclearedupbythoseleftbehind.Meanwhileitisjustaswelltowaitwitharesigned acceptance. Thefifthstageisthatofacceptance('Yes,itisme').Thisfinalstageispositive.Althoughdeathisnear,orcomingoverthehorizon,itcanbereceivedwithequanimityif notjoy.Meanwhilewhattimeandenergiesareleftcanbeusedcreatively.Itispossibletoenjoytheworld,evenifonlyasaspectator,rejoicinginothers'successes. Eachdayisacceptedasagifttobeused.Familyandfriendsarewelcomedandappreciatedthosewhocarearerecognizedforalltheydopreparationscanbemade fortheend,suchasensuringwillsareinorderlooseendscanbetiedup,reconciliationsmade,thanksexpressed. Ofcourse,thesemorepositivereactionsarenotconfinedtothosefacingimminentdeathbutcanbepartofthewholeprocessofmovingintooldage.Thefirstmay resultinakindofuninterestedinertia,possiblybecomingreclusive.Everythingistoomuch

Page23

bother.Thelatterattitudemayappeardefiant,butmayinfactbeanewleaseoflife.Iftheendisdrawingneartheneverythingisprecious,tobeenjoyedand savoured.Itisasthougholdandfamiliarthingsbecomenew,thereforthefirsttime,givenanewintensity.Yetitisalsopossibletosayfarewellwithoutundueanxiety orregret. Thisisthesenseinwhichdyingissaidtobethefinalstageofgrowth.Maturitycanbedefinedaslivingappropriatelyatanystageoflife.Sothereisakindof appropriatenessinageinganddying.Onecanmoveintothelaststageinsuchawayastocopewithitpositively.Thisiscoupledwiththesenseofreadinesstodie. Therearefrequentstoriesofhowpeoplehave,perhapsafterseeingachildagainaftermanyyearsoraftersomeactofreconciliation,allowedthemselvestodie.They arewillingtoletgo.Theotheraspectofthissenseofgrowthisthatofroundingoffajourney,offinishingatask,ofbeingcomplete.29 Hereitisperhapsappropriatetomakeanumberoffurtherpointswhichcanhelptofilloutthisoutline. Oneofthepersistentideas,notleastamongdoctors,isthathopemustbesustained.Bythatisnormallymeantthatapatienthastohavesomeexpectationofapositive outcomei.e.cureorremission.Sometimesthatissustainedbysuppressinginformationornotadmittingtoabadprognosis.Thereisconsiderablediscussionofthe desirabilityofsuchapolicy,notleastbecauseiffalsehopeisheldoutanditfails,itcanleadtoevengreaterdisappointment.Inanycasethepatientcanoftentellwhat isnotbeingsaid,andsuchapolicymerelyresultsinaconspiracyofsilence.Nottofacethetruthcanoftenforecloseapropergrievingprocessforbothpatientand family.Increasinglyitisbeingseenthat,withsensitivityandskill,recognizingthepossibilityofexceptionalcaseswhenperhapsthepatientisnotreadytolistentothe truth,itisbetterthatthesituationisopenbetweenallconcerned. Partoftheproblem,however,hasbeentheinabilitytorecognizedifferentkindsofhope.Itisnotwrongtohopeforcureorrespite,butthereareotherrealisticforms ofhopethatcanaccepttheprospectofdeathyetputitintosomekindofproportion.Theobviousformofsuchhopeislifeafterdeath.Buttherearealsohopesfor children,forspouse,forthecontinuityofalife'swork.Hopedoesnotmeanbettingagainsttheoddsorindulginginwishfulthinking,butanacceptanceofrealityina positiveandcreative

Page24

waythataffirmsthefutureeveninthemidstofdeath.Therecanbefalse(evenfalsereligious)hopesandhealthy(evenhealthyreligious)hopes.Pastoralcare,in conjunctionwithmedicalcarewhereappropriate,willtrytoenablepeopletokeephope,butapositive,realistichope.30 Thisleadstoaconsiderationofhowimportantafaithorametaphysicisforthoseapproachingdeath.Thereisevidencetosuggestthatthosewhohaveamature workingfaithstructure,whetherreligiousornot,canadjustmoreeasilytothenearnessofdeaththanthosewhodonot.Amaturefaithorworldviewisonethat providesbothareasonedandsatisfyingperspectiveonlifeandcantakeintoaccountlife'schallenges,experiencesanddiscontinuities.Itdoesnothavetobeableto provideananswerforallcircumstancesbutcansustainonethrough'thevalleyoftheshadow'aswellasatmoreserenemoments.Ontheotherhand,atoorigidor simplisticsetofbeliefsisoftentoobrittletowithstandtheimpactoflife'sills,andamerelyinheritedorconventionalfaithsystemwillnotbedeeplyrootedenoughto sustainitselfunderpressure.Thismeansthattherecanbemoreorlessadequateformsofreligiousornonreligiousbeliefs.Thisqualityoffaithiscloselyboundtothe person'slifestoryasithasbuilttheircharacterovertheyears.Inotherwords,itisnotonlythetruthandadequaciesofthebeliefsthemselvesbutalsotheformationof thepersonalitythroughandaroundthemthatenablesapersontohandletherealityofdeath.31 Itisalsoofinteresttoaskwhatisthoughtofasa'gooddeath'.Inaformerage,todieagooddeathwouldhavebeentohavemadeproperpreparation,tohave gatheredthefamilyroundsothatonecouldsayfarewellandbeseentobeatpeace.Lastwordswereimportantasindicatingthestateofthesoulatthesolemn moment.Tosomeextentthishasbeenrecoveredbythehospicemovement,withitsemphasisonapproachingdeathwithdignity.However,eachweekinthe Guardianapersonality,inrespondingtoaseriesofquestions,isaskedhowtheywouldwanttodie.Inlinewithoursuggestionthatdeathisessentiallyunderstoodas aprivate,individualeventtobeminimizedinimportance,almostwithoutexceptionthereplyistoslipquietlyawayinsleep.Theemphasisisonlackoffuss,little warningandnopain.Italsosuggeststhattherehasbeenashiftininterestfromthepointofdeathtowardstheprocessofdying.Timeandagainonehearsthatbeing dead,deathitself,doesnotcarryanyanxiety,butthereareconsiderablequalms

Page25

aboutthemannerofdying.Thereisadesirenottodiehelplessandafteralongperiodofatrophy,nortodieinpain.32 Death,ofcourse,isalwaysunpredictableanddifficult.Howeverwellprepared,nooneiswithoutsomefearatthedoorofdeathnooneissparedtheshockof bereavement.Anddeath,howevercarefulweareofthedignityoftheonedying,isusuallyamessy,agonizingandtortuousexperienceforboththeonedyingandfor thosearound.Itiswrongtosentimentalizeorromanticize.Whateverwemaywanttosayaboutdeath,itcomestoeachpersondifferentlyandweallreactdifferently. Idealsmustnotimposeexpectations.Peoplemustbeallowedtobethemselvesandtoliveouttheirownexperience.Thetaskofthecounselloristoprovidesupport andstabilityasacompaniononanother'sjourneysothattheycanmakethebestofthemselvesandtheircircumstances. 7 Conclusion Thischapterhastriedtolookatthewaysocietyhandlestheproblemofmortality.Wehavelookedathowpeopleexperiencetheprocessofdyingandhowsocietyas awholeexpressesitsperceptionofdeath.Atthispoint,however,itmustbestressedthatgeneralizationsmustbetemperedwithtwocautions.First,ashasbeennoted fromtimetotime,notwodeathsarethesame.Weeachhavetowalkourownpathfromlifeintodeath.Secondly,andmoreimportantly,wehavetotakeinto accountthepluralismofoursociety.Thereare,ofcourse,variationsofperspectiveandpracticeaccordingtolocalityandgeneration.Somecommunitiescontinueto reflectearlierculturalpatterns.ButinrecentdecadesBritainhasalsobecomemoreethnically,religiouslyandculturallydiverse.Thisisnotleastexpressedinthe customsandritualsthatsurroundthecentralmysteryofhumanexistence.Theassociationofdeathanddyingwiththeprivatespheremakesitpossibleforthese variationstoexistsidebyside,bothwithinChristianityandbetweensuchreligiousgroupsasHindu,MuslimorBuddhist(seechapter6forfurtherdiscussion).33 Thesociologicalperspectivethatthischapterhasattemptedtoaddressisimportantonanumberofaccounts.First,itprovidesthecontextwithinwhichweeachhave tomakesenseofourowndyingandwithinwhichthoseengagedincaringforthedyinghavetowork.Secondly,itprovidesacontextfortheethicaldebates

Page26

aboutdeathanddyingthatfaceustoday.Ethicalissuesareneverfacedinavacuumbutreflectthecontemporarycontext.Howasocietydealswiththerealityofdeath embodiesourdeepestbeliefsaboutthenatureandworthofhumanity.Thisistheheartofmoralchoice.Thirdly,thosewhoareengagedinthecareofthedyingalso havetotakecognizanceofthosesocialandpsychologicalrealitiesthatshapeourselfunderstanding.Bothsocialpolicyandpastoralcaredealwithquestionsof personaldignityandaskhowourlifetogethershouldbeshapedinordertoexpresswhatitmeanstoliveanddieashumanbeings. Notes

1 2

InG.Gorer,'Thepornographyofdeath',Encounter(October1955)seealsohisDeath,GriefandMourning(London,Cresset,1965).

TakenfromCliveSeale,'Demographicchangeandthecareofthedying196987',inDonnaDickensonandMalcolmJohnson,Death,DyingandBereavement (London,Sage,1983),55ff.Forfurtherinformationsee,e.g.,OPCS,MortalityStatistics:EnglandandWales1987:Canoe(London,HMSO,1989)andother analysesofofficialstatistics.

3 4

SeeDavidCannadine,'Waranddeath,griefandmourninginmodernBritain',inJoachimWhaley,MirrorsofMortality(London,Europa,1981).

Forreactionstoretirementsee,e.g.,RoryWilliams,AProtestantLegacy(Oxford,Clarendon,1990).esp.I.2alsoPaulH.Ballard,InandOutofWork (Edinburgh,StAndrews,1990).
5

SeePhilipA.Mellor,'Deathinhighmodernity',inD.Clark,TheSociologyofDeath(Oxford,Blackwell,1993).(Thevolumealsoincludesausefulsummaryofthe presentsociologicaldiscussionbyTonyWalter.)SeealsoMichaelButlerandAnnOrbach,BeingYourAge(London,SPCK,1993).
6

LangdonGilkey,ReligionandtheScientificFuture(London,SCM,1970).Fordiscussionsofthedoctors'dilemma,seerelevantcontributionstoDickensonand Johnson,op.cit.
7

R.A.Lambourne,'Towardsanunderstandingofmedicaltheologicaldialogue',inMichaelWilson,ExplorationsinHealthandSalvation(Birmingham,Institutefor theStudyofWorshipsandReligiousArchitecture,1983),whichincludesthe'Conceptsmapforthepracticeofmedicine',p.223.SeealsoMichaelWilson,Healthis forPeople(London,Darton,LongmanandTodd,1975).

8

See,e.g.SanddStoddard,TheHospiceMovement:ABetterWaytoCare

Page27

fortheDying(London,Cape,1978).
9

BruceD.Rumbold,HelplessnessandHope(London,SCM,1986),ch.1. Ibid. PaulH.Ballard,''Thesocialcontextofthefamilytoday',Contact,114(1994). SeeSeale,op.cit. Seee.g.DanielLey,ASocialGeographyoftheCity(NewYork,HarperandRow,1983),ch.3.

10 11 12 13 14

MichaelMulkay,'SocialdeathinBritain',inD.Clark,op.cit.EleanorD.Gatliffe,DeathintheClassroom(London,Epworth,1988)offersawaytocounteract thisthroughacourseforschools.
15 16

Seee.g.ElizabethDean,'Sittingitout',inDickensonandJohnson,op.cit.,andButlerandOrbach,op.cit.

PhillipeAris,TheHourofOurDeath(London,AllenLane,1981).Seealsoe.g,JoachimWhaley,op.cit.andspecialiststudies,D.Clark,BetweenPulpitand Pew(Cambridge,CUP,1982)RoryWilliams,op.cit.RosemaryPaine,'DeathinIreland',inDickensonandJohnsonop.cit.
17 18

See,forthegeneraldevelopment,MichaelYoung,'Rightchoiceforritesofpassage',TheGuardian,23July1994.

SeeWilliams,op.cit.,ch.4alsoCannadine,op.cit.ForasurveyofAustralianattitudesandpracticesseeGraemeM.GriffinandDesTobin,IntheMidstof Life...(Melbourne,UniversityPress,1982).
19 20

GlennysHowarth,'Investigatingdeathwork',inD.Clark,op.cit.(193)alsoGriffinandTobin,op.cit.

TheclassicaccountisJessicaMitford,TheAmericanWayofDeath(London,Hutchinson,1963)butseealsothereportonbeingburiednearyourheroinThe Guardian,15August1994.
21 22 23 24 25

SeereportinTheGuardian,23July1994alsoWilliams,op.cit.:PeterJupp,'Cremationorburial',inD.Clark,op.cit.(1990). SeeDavidCannadine,op.cit. Ibid. Revelation6:18.

Suchremindersaretraditionallytobefound,e.g.onmemorialsinchurches,especiallyinsomemedievaltombswhereaskeletoniscarvedalongsidetheeffigy,orin paintingsandportraitsintheRenaissanceperiod.QuotationfromBookofCommonPrayer(1662).
26 27

ElisabethKublerRoss,Death,theFinalStageofGrowth(EnglewoodCliffs,PrenticeHall,1975)LivingwithDeathandDying(London,Souvenir,1981). SeeWilliams,op.cit.,ch.2.AlsoIanAinsworthSmithandPeterSpeck,LettingGo(London,SPCK,1982).

Page28
28 29

SeealsoSheilaCassidy,LightfromtheDarkValley(London,DartonLongmanandTodd,1994)andDickensonandJohnson,op.cit.,part4.

SeeElisabethKublerRoss,op.cit.(1975),chs.5and6.ForasummaryofanumberofmaturationaltheoriesseeMichaelJacobs,TowardstheFullnessof Christ(London,Darton,LongmanandTodd,1988).Thereareanumberofpersonalstories,e.g.inDickensonandJohnson,op.cit.MaryAustin,FreetoDance withtheLordoftheDance(London,Epworth,1992)JoAnnKelleySmith,FreeFall(London,SPCK,1975).

30 31 32

Rumbold,op.cit.,ch.4. GraemeM.Griffin,DeathandtheChurch(Melbourne,Dove,1978),64ffWilliams,op.cit.,ch.9.

MaryBradbury,'Contemporaryrepresentationsof"good"and"bad"death',inDickensonandJohnson,op.cit.Foratheological/pastoralreflection,seeHenriM. Nouwen,OurGreatestGift(London,HodderandStoughton,1994).
33

Williams,op.cit.,ch.9.Forabroadinterfaithsurvey,seeJohnBowker,TheMeaningsofDeath(Cambridge,CUP,1991).Also,forgreaterdetail:DonaldP. Irishetal.,EthnicVariationsinDying,Death,andGrief(Washington,TaylorandFrancis,1993)G.R.DunstanandMarySellers,ConsentinMedicine (London,King'sFund,1983)ArthurBergeretal.,PerspectivesonDeathandDying(Philadelphia,Charles,1989).

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3 MeasuringtheQualityofLife
AndrewEdgar 1 Introduction Theattempttomeasure'qualityoflife'hasbeenaconcernofsocialscientistsforsometime.The1970sand1980ssawarapidexpansioninthenumberofthese means,andadevelopmentintheirsophistication,inthefieldsofhealtheconomicsandepidemiology.1 Themotivationsbehindthisresearcharevarious.Atbaseitis recognizedthattheimprovementofthequalityoflifeofapatientiseitheroneoftheobjectivesofhealthcare(alongsidediseaseprevention,alleviationofsymptoms andpain,provisionofhumanecareandprolongationoflife),orissynonymouswiththeimprovementofhealthitself.Assuch,measurementofchangesinpatients' qualityoflifeisindicativeoftheachievementsofahealthservice.Aschronicanddisablingdiseasesbecomemoreprevalent,measuresofachievementthataremore subtlethancrudemortalityratesoryearsofpatientsurvivalbecomeincreasinglyimportant.Qualityoflifemaythereforebeinvokedaspartofamedicalaudit,and maythusservearoleindemonstratingtheefficiencyandeffectivenessofanymedicalinterventionsorservices,andsuchqualityoflifemeasuresmaybeusedinthe assessmentofnewmedicaltechnology.Broadlybasedmeasuringinstruments,suchastheSicknessImpactProfile(whichtakesaccountofpatients'emotional behaviour,theirabilitytoworkandtomanagetheirhomes,andtoenjoyrecreationalandsocialactivities),mayfurtherbeusedasaroutinecomplementtoexisting, typicallybiologicalorphysiological,measuresofapatient'shealthstatus,inordertorecordchangesinthepatient'sbehaviourandsubjectivereactionstohisorher health,ortoindicatetherelationship

Page30

betweensocialorenvironmentalfactorsandhealth.Throughacomparisonofqualityoflife(astheoutputofmedicalcare)andthecostsofthecare,indicationscanbe takenofthecostefficiencyofatreatment.Mostcontroversially,qualityoflifemeasuresmaybeemployedtoguidetheallocationofscarcehealthcareresources (betweenspecialisms,formsoftreatment,orevenbetweenpatients),inresponsetothepressureexertedbytheincreasingexpenseofhealthcareinterventionsandan increaseinthedemandformedicaltreatment.Therangeofmeasuresofqualityoflifethathavebeen,andcontinuetobe,developedislargelyexplainedbytheneedto tailormeasuresforspecificpurposes. Twousesofqualityoflifemeasuresinvolvingdecisionsaboutthelifeanddeathofpatientsmaybedistinguished.Ontheonehand,asaninstrumentfortheallocation ofscarceresources,qualityoflifemeasuresmayappeartojustifyawithdrawalofresourcesfromamedicalspecialism,orfromcertaincategoriesofpatient.Itmay bearguedthatgreaterbenefitswillbeachievedifagivensumofmoneyisusedtocarryout,forexample,adozenhipreplacementsratherthanasingleheart transplant,orthatpatientswithlungdiseasesareunlikelytoimprovesufficientlytojustifytheirreceiptofacoronarybypassoperation.Patientstherebydeprivedof treatmentfaceprematuredeath.Ontheotherhand,aspecificpatientmaybedeemedtohaveaqualityoflifethatissolowthatitsmaintenanceisundesirable,andthus thatdeathispreferabletothepatient'scurrentqualityoflife. Inthischapter,Iwillillustratethedevelopment,designandapplicationofqualityoflifemeasuresthroughreferencetotheQualityAdjustedLifeYear(QALY).Iwill rehearseadefenceoftheQALYapproachthatseesitasapotentialindicatorofthepublic'spreexistingattitudestoandopinionsonhealthcareresourceallocation.I willsuggestthat,ifthisisafairdefence(andthisisabig'if'),thenQALYsmightindicateasociety'scollectiveopinionastothelimitsofaworthwhilelife(andthus uponthehealthconditionsthatwouldjustifyallowingapatienttodie).Iwillthenexaminethewaysinwhichqualityoflifemeasuresmaybeimplicatedinlifeand deathdecisionsaboutpatients,specificallybyexploringtheunderstandingofdeaththatisimplicitinthesemeasures.Itwillbeconcludedthat

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currentformulationsofqualityoflifemeasuresarebasedupontoonarrowanunderstandingofdeath,andindeedoflifeitself,insofarastheyfailtorecognizetheneed fortheculturalresourcesthatarenecessarytomakesenseof(especiallypremature)death. 2 QALYs ThefundamentalideathatgroundstheQualityAdjustedLifeYearinvolvestheassumptionthatayearofgoodhealthcanbegiventhevalue1.Ayearofunhealthylife hasavalueoflessthan1,withdeathbeinggiventhevalue0.Fromthisinitialassumption,theconstructionofthequalityoflifemeasureproceedsthroughthedefinition ofaseriesofhealthstates.Eachstateisthengivenanappropriatevalueorweight.RosserandKindinitiallydefinedhealthstatesintermsofonlytwoparameters: objectivedisabilityandsubjectivedistress.Disabilitywassubdividedintoeightdegrees,anddistresswassubdividedintofourdegrees.2 (Thecategoriesarelistedin table1.) Thisservedtodefinethirtytwostates,ofwhichthreewereomitted(asitwasarguedthatdistressisirrelevanttosomeonewhoisunconscious).Thevaluestobe attributedtoeachstatewereascertainedthroughinterviewswithseventysubjects.(Thisgroupwascomposedofmedicalpatients,psychiatricinpatients,generaland psychiatricnurses,doctorsandhealthyvolunteers.Itmustbestressedthat,althoughtheoriginalQALYvaluationshavetendedtobetakenasdefinitive,thiswasvery muchapilotstudy.)Theinterviewbeganwiththerequesttoordersix'markerstates'accordingtotheirrelativeseverity,andthen,forthepurposeofplacingthese statesonascale,theorderedmarkerstatesweretakeninpairs,withtheintervieweebeingaskedtosay'howmanytimesmoreillisapersondescribedasbeingin state2ascomparedwithstate1?'Intervieweeswereaskedtodeterminetheratiothroughreflectionontheproportionofresourcesthattheyconsidereditjustifiableto allocatebetweenthetwostates,andasanexpressionoftheinterviewee's'pointofindifferencebetweencuringoneoftheillerpeopleoranumber(specifiedbythe ratio)ofthelessillpeople'.Theremainingtwentythreehealthstateswerethensubjectedtoasimilartreatment.Theintervieweeswerealsoaskedtoplacedeath somewhereontheirscale.3

Page32 Table1Classificationofstatesofsickness Disability 1.Nodisability. 2.Slightsocialdisability 3.Severedisabilityand/orslightimpairmentofperformanceatwork.Abletodoall houseworkexceptveryheavytasks. 4.Choiceofworkorperformanceatworkveryseverelylimited.Housewivesandold peopleabletodolighthouseworkonlybuttogooutshopping. 5.Unabletoundertakeanypaidemployment.Unabletocontinueanyeducation.Old peopleconfinedtohomeexceptforescortedoutingsandunabletodoshopping. Housewivesableonlytoperformafewsimpletasks. 6.Confinedtochairortowheelchairorabletomovearoundinthehomeonlywith supportfromanassistant. 7.Confinedtobed. 8.Unconscious. A.Nodistress. B.Milddistress(slightpainwhichisrelievedbyaspirin). C.Moderatedistress(painwhichisnotrelievedbyaspirin). D.Severedistress(painforwhichheroinisprescribed). Source:RosserandKind,1978,349

TheQALYmatrixisnotdiseasespecific,whichistosaythat,inprinciple,apatientsufferingfromanydisease,andatanypointinthedevelopmentofthatdisease, canpositionhercurrentexperienceofthediseaseonthematrix.Givenappropriatestatisticalinformationontheprognosesofpatientswithorwithouttreatment,or undergoingalternativetreatments,theQALYmatrixcanbeusedtoassessthechangestoapatient'squalityoflifethatresultfromtreatment. Forexample,apatientwho,withouttreatment,wouldcontinuetoliveforafurthertwentyyearsinstate4A(andthuslimitedinthetypeofworkheorshecan undertake,butsufferingnodistress)wouldenjoy19.28QALYs.IfitisassumedthattreatmentAwillfacilitateacompletecureandaddafurthertenyearstothe patient'slife,thenafurther10.72QALYswouldbeyielded,ortheequivalentofanextra10.72yearsofgoodhealth.Ifweassumethatanalternativetreatment(B) wouldgivethe

Page33 Table2QALY(matrixmarkerstatesinitalics)

Disability 1 2 3 4 5 6 7 8 A 1.000 0.990 0.980 0.964 0.946 0.875 0.677 1.028 B

Distress C 0.995 0.986 0.972 0.956 0.935 0.845 0.564 0.990 0.973 0.956 0.942 0.900 0.680 0.000 D 0.967 0.932 0.912 0.870 0.700 0.000 1.486

Source:Kind,RosserandWilliams,1982,160.

patientthirtyfiveyearsoflife,butwithslight(ratherthanno)disability(andthusahealthstateof2A),theQALYapproachcanbeusedtoassistindecidingwhich treatmenttouse.(ItmaybenotedthatanappealtomerelongevitywouldimmediatelyfavourB.)BytheQALYcalculation,Byieldsanextra15.37yearsofhealthy life,incomparisontonotreatmentatall(i.e.34.6519.28).IncomparisontotreatmentA,Boffersthepatientanextra4.65QALYs.Bthusremainsthefavoured treatment.B'ssuperiorityisonlychallengedwhenitscostistakenintoaccount.IfweassumethattreatmentAcosts10,000,theneachextraQALYityieldscomes atthecostof932.84(i.e.10,000/10.72).IfBcosts15,000,theneachextraQALYcosts975.93(i.e.15,000/15.37).Thus,whileBmaygivethepatientalonger life,andtheequivalentofmoreyearsofgoodhealth,itisthelesscostefficienttreatment.Iftherewereonly30,000availabletotreatthisparticulardisease,theuseof treatmentAwouldnotsimplyallowthetreatmentofmorepatients(threeastotwotreatmentsofB),butwouldalsoyield32.16QALYs,asopposedtoonly30.74 QALYsyieldedbyspending30,000ontreatmentB.(Itmaybenotedthatalthoughanextrapatientisbeingtreated,theothertwoarebeingcondemnedtodiefive yearsearlierthanistechnicallynecessary.) TheQALYisanexampleofahealthstatusindex.Indexesfacilitatethecomparisonofdiversehealthstates,andthusallocationdecisions.Thehealthofthepatientis expressedasasinglevalue,howevermanyaspects(or'parameters')ofthehealthstatesaretakenintoaccount.Itmaybenotedthat

Page34

indexescanbecompiledusingmorethantwoparameters.Forexample,EuroQolisamoresophisticatedformoftheQALY.Thetwodimensionsofdistressand disabilityarereplacedbythesixdimensionsofmobility,selfcare,activity(suchaswork,houseworkandstudy),socialrelationships,painandmood.Intervieweesare askedtorankdescriptionsofhealthstatesthatspecifytheconditionofeachofthesesixdimensions.4 Analternativeapproachtothemeasurementofhealthstatesdoesnotseektoreducethediverseparameterstoasinglevalue.Instead,a'profile'isprovided,thatmaps thepatient'sperformanceoneachparameterseparately.Aparticularcombinationofperformancesisnotnecessarilyjudgedtobeanimprovementoveranalternative combination.Suchmeasureswillbeofuseinassessingapatient'sprogress,orinassessingtheefficacyofmedicalinterventions.Profilestypicallyallowamore comprehensiveandsubtleaccountofahealthstate(albeitanincreaseindimensionsleadstoacorrespondingincreaseinthecomplexityofthetaskofeliciting appropriateresponsesfrompatients),andmayreadilybetailoredtobereceptivetoparticulardiseases.5 3 ADefenceofQALYs TheuseofQALYs,particularlyintheallocationofhealthcareresources,istypicallydefendedonthegroundsthattheyallowustocalculatethemostefficientuseof scarcehealthcareresourcesandtherebymaximizetheamountofgoodhealththatcanbegenerated.6 PaulT.Menzelhas,however,proposedadistinctivedefenceof QALYs.7 Menzel'sargumentrestsontheusethatqualityoflifemeasuresmakeofsurveydata.Hissuggestionisthatitispossiblesotoconstructthequalityoflife questionnairethattheQALYmatrixcomestorepresentthepopulation's'priorconsent'tospecificallocationsofhealthcareresources.Ineffect,thequestionnaireis seentosample,andindeedfocus,publicopinionaboutallocation,therebygivinglegitimacytotheallocationdecisionsmadeuponthebasisoftheQALYmatrix. MenzelbeginsbynotingthatQALYsrestontheintuitionthat,allotherthingsbeingequal,Iwouldpreferashorterlifeofgoodhealththanalongerlifeofpoorhealth. TheexactfiguresthatIwouldgivetothelengthoftheserespectivelivesandthedegreeofpoorhealthsufferedareindicativeoftheQALYweightingsIwould

Page35

affirm.(Astandardformofenquiryinqualityoflifesurveysisthe'timetradeoff'.Therespondentisaskedhowmuchshorteralifeingoodhealthheorshewouldfind preferabletoalongerlifetimewithagivendisabilityand/ordistress.)However,tosaythatIwouldbehappywithmylotshouldIdieprematurelyhavingavoided moderatedisability,isnottosaythatIwouldbehappyifmylongdisabledlifewastobeallowedtoendprematurelyinordertopreservetheshorthealthylifeof another.Thatistosaythatachoicebetweentwopossibilitiesformylifedoesnotentailtheaffirmationofachoicebetweenmylifeandthatofanother.Thisisindeed thecruxofJohnHarris'snowfamouscriticismofQALYs.Tochoosebetweentwolives,ormoresignificantly,toallowonepersontolivefor,say,anextraseven yearsofgoodhealth,whiledeprivingfiveothersofthepossibilityofanextraoneyeareach,overlooksthefactthateachpersoninvolvedwantstoliveequally fervently.Harristhereforepreferstoallocateresourcesaccordingtothenumberoflivessaved,notingthata'disasteristhegreaterthemorevictimsthereare,themore livesthatarelost',nomatterhowlong,orhowgood,eachlifeis.8 Menzel'sresponsemaybeseentorestupontheassumptionthatjusticeentailstheneedfor individualswithinasocietytomakesacrificesforeachother.Givenscarcemedicalresources,theextremesacrificeisformetobepreparedtogiveupmyminimal (albeit,tome,precious)lifeexpectancy,foranother. MenzelsuggeststhatQALYrespondentsshouldbepresentedwithquestionsthatexplicatethelifeanddeathimplicationsoftheirexpressedpreferences.Hetherefore proposesa'QALYbargain',bywhichtherespondentspecifiesthedegreeofriskthatheorsheiswillingtotakeofbeingallowedtodieduetoapoorQALY prognosis,inreturnfortheincreasedchanceofbeingsavedifheorshehasagoodQALYprognosis.Ineffect,Menzelisarguingthat,ifwearedivorcedfromour personalinterestinourcontinuedwellbeing,andthusfromthepsychologicalfactthatwemayallwanttogoonlivingequallyfervently,wecouldendorseaparticular, unequalandyetnonarbitraryallocationofscarcehealthcareresourcesasbeingrationallyjustifiableongroundsakintothoseexplicatedbytheQALYconcept.The consequenceofthisendorsementisthat,shouldacatastrophebefallmeandIamleftwiththeprospectofavery

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lowqualityoflife,thenIacceptthatIamoflowerpriorityinthequeueforhealthcareresourcesthansomeonewithgoodprospects,evenifthatentailsmydeath. TworeservationsmaybenotedconcerningMenzel'sargument.Firstly,itisnotclearthatanycomplexmodernsocietywouldgiverisetoaconsensusonhealthcare allocation,evenifconfrontedbytheQALYbargain.ItisnotablethatRosserandKind,inresearchingtheiroriginalQALYmatrix,alsoproducedmatricesforeachof thesixsubgroupsthatmadeuptheirsamplepopulation.Eachgroupgeneratedadistinctivematrix.Thissuggeststhatanyindividualisunlikelytohaveactually consentedtothematrixoftheaggregatepopulation,andthusthathisorherresponsetotheQALYbargainisunlikelytoberespectedinpractice.Secondly,inthatthe QALYbargainworksbyelicitingexistingpublicopinion,itentailsthatanyallocationbaseduponthebargainwillbelegitimateonlyrelativetothatpublic.Ithasbeen suggestedbyanumberofcommentatorsthattheexistingdependenceofQALYsonsurveysofthegeneralpublicisliabletoexposesubsequentallocationdecisionsto thatpopulation'sprejudicesandbiases.Forexample,apopulationthatis,ingeneral,highlyintolerantoftheseverelydisabledmayskewtheweightingofthematrix significantlyagainstthatgroup,therebydeprivingthemofhealthcareresources.9 WhiletheseparationoftheQALYmatrixfromreferencetoanyspecificdiseases andhealthconditionmitigatesthedanger,itremainsconceivablethattheQALYbargainmightreflectourfearatbeingcondemnedtoliveamongstastigmatizedsocial group,ratherthanoursimplereactiontotheprospectofdisabilityanddistress.Thesepointswillbeseentocolourthefollowingdiscussion. 4 Death Wemaynowturntothepossibilityofusingqualityoflifemeasuresasaguideorjustificationfordecisionsabouttheremovalofhealthcarefrom,oreventheactive euthanasiaof,certainindividuals.ItmaybenotedthattheQALYmatrixallowsanegativeweightingforcertainhealthstates.InRosserandKind'soriginalmatrix,the conditionsofbeingconfinedtobedinmoderatepain(C7),andconfinedtoawheelchairinseverepain

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(D6)arebothjudgedasbeingequivalenttodeath.Unconsciousness(A8)andconfinementtobedinseveredistress(D7)bothreceivednegativeweights,andthusare consideredtobeworsethandeath.Whileadvocatesofqualityoflifemeasureswarnthat'physiciansmustresistuseof...measurestojustifywithholdingresources frompatientswithlowratings',10negativeweightingsmightbetakentoentailthatitisintheinterestsofapatientwhochronicallysuffersundersuchconditionstobe allowedtodie.Ineffect,euthanasiawouldyieldmoreQALYsthananylifesustainingtreatment.(Otherindexes,includingEuroQolandtheIndexofWellBeing,also allowforthispossibility.)Givenitsgroundinginsurveymaterial,itmaybesuggestedthat,atleastinprinciple,theQALYmatrixrepresentsacollectiveviewonthe limitsofabearablelife. WilliamAikenreferstotheuseoftheconceptofqualityoflifetojustifytheremovalofresourcesfromparticularindividualsasits'exclusionary'use.11Atitsworstit entailsthatanyindividualwhodoesnotachieveagivenqualityoflife,forwhateverreason,shouldbedeprivedoftheresourcesnecessarytocontinuethatlife.Aikenis criticalofsuchargumentsonthegroundsthattheypresupposethatanypersonwhocannotstrivetowardsanideallife,orevenwhatmostpeoplewouldregardasa normallife,hasalifeofnovaluewhatsoever.Thisisclearlyanextremeassumption.Thefactthatanindividualiscurrentlyunabletoaspiretoanidealqualityoflifeis notagroundtodevaluehislifealtogether(andsodenyhimnecessaryresources).Itmayrathergivegroundsforprovidinghimwithsuchresourcesaswillallowhimto prosper.Thisapproachbecomesproblematicwhentheindividualsconcernedareincapableofsobenefiting,andwhentheircurrentqualityoflifedoesnotevenattain tothehumanminimum.Aikengivestheexamplesoftheirreversiblycomatoseand'severelydefectivenewborns'.Aikensuggeststhatinsuchcaseswearepreparedto considerallowingtheindividualstodie,butonlybecausetherearecostsentailedinkeepingthemalive.Hiscommentthattheseindividualsareperceivedtobe consuming'[v]aluableresourceswhichcouldbetterbeusedtoenhancethequalityofofthelivesofothers'(p.32)iscoherentwiththeuseofQALYs.Similar resourceswouldbebetterused,aQALYbasedrecommendationcouldread,inimprovingthequalityoflifeofapatientcapableofconsciousandpurposefulaction,

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ratherthaninmaintaininganindividualinanirreversiblecoma.WhileAikenseeminglyacceptsthislineofargument,heisatpainstopointoutthattheremovalof resourcesfromtheindividualdoesnottherebyexcludeherfrommoralconsideration.Thepersonremainsworthyofrespect,andmaynotthusbeabused(for example,asthevictimofexperimentation).Itmaybeaddedthat,accordingtotheQALYwayofthinking,itisintheinterestsofthosewithapermanentnegative qualityoflifetodie.Deathwouldalleviateanexcessivelyburdensomeexistence.Allowingherdeathistherebyanactrespectfulofcertainmoralinterestsofthe individual. Aikenisnot,however,concernedexclusivelywiththeeconomiccostsofkeepinganindividualalive.Hereferstothe'financial,resourceallocational,oremotional' costs(p.32).Hisreferencetoemotionalcostsissignificant.Itopensupspeculationastowhatisentailedinaworthlesslife,andmorepreciselyofwhobearsthecosts ofsuchalife.Iwillarguethatitisthecostsbornebythepatient,intheformofindignityorthecontinuationofameaninglesslife,thataremostsignificant.Aiken's argument,andmoreimportantlytheQALYapproach,tendtofocusonthecostsbornebyothers. Emotionalcostsmaybebornebytherelatives,closefriendsorcarersofthepatient.ThiswouldbeparticularlythecaseinAiken'stwoexamplesoflifelivedbeneath thehumanminimum.BothcaseswouldfallunderAs(andthushaveavalueof1.028)intheQALYmatrix,andthusbeadjudgedworsethandeath.Thisisrevealing. Ifitisacceptedthatpermanentunconsciousnessistheabsenceofexperience,andthuspresumablyakintodeath,thenitmaybesuggestedthatAsdeservesascoreof zero,oronlymarginallylessthanzero.Themarkednegativeweightingseeminglyreflectseitherrespondents'anticipationoftheirownpotentialpermanent unconsciousness,ortheirdistressatseeingothersinthatstate.Inthesecondcase,thejudgementisthatofanobserver,ratherthansomeonewhoexperiencesthe state.TheQALYmaytherebyprivilegetheemotionalcostsbornebyobservers,ratherthanthosebornebythepatient.QALYweightingsingeneralappeartoreflect ourdistressattheindignitysufferedbyanother,orourfearfulanticipationoffallingintosuchundignifiedstates.Assuch,itmaybesuggested,theygobeyondmere healthrelatedqualityoflife,toanormative

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judgementastowhatitistobehuman.(ThedangerofirrationalprejudiceinfluencingtheQALYscoremayberecalled.)Aiken'sconcernovertheexclusionaryuseof qualityoflifecriteriaistherebyaffirmed,insofarasQALYsmaygrosslyundervaluestatesthatdeviatesignificantlyfromsomeperceivednormofhumanexistence. Analternativeinterpretationofemotionalcostisasthecostofadjustingtotheseverelydisablingcondition.BrockcitesthemaincharacteroftheplayWhoseLifeisit Anyway?,assertingthatshe'doesnotwanttobecomethekindofpersonwhoishappyinthatdebilitatedanddependentstate'.12Hispointisnotthatthisisthe inevitableoruniversalreactiontothepossibilityofseveredisability,butratherthatitisonepossibilitythathighlightstheresourcesthatthepatientrequiresinorderto cometotermswithdisability.Moreprecisely,itservestorevealtherolethat(good)healthplaysasapreconditionofourownconductofanormal,dignifiedand, aboveall,meaningfullife.Thecontinuationofanormallifeintheabsenceofgoodhealthrequiresalternativeresources.Theseresourcesmaytaketheformofmedical technologyandcare,andtheemotionalandculturalresourcesnecessarytoreconsiderwhatispossibleandwhatisworthdoing.Inthislight,thelifenolongerworth livingisthatinwhichnosuchresourcesareavailabletothepatient,ornosuchresourcescanbeutilizedbythepatient. Thislineofinquirymaybedevelopedthroughamoredetailedreflectionontheconceptsof'life'and'health'.Brockdrawsonthedistinctionbetweena'biologicallife' anda'biographicallife'.Hispointisthataperson'slifeisnotworthpreservingunlessthatpersonhasthecapacitytogivemeaningtohislife.Themeaningfulor biographicallifeis'livedfromthe''inside"'.Itischaracterizedbytheperson's'capacitytoformdesires,hopes,andplansforthefuture'.Itis'"life"understoodasa connectedplanorunfoldingbiographywithabeginning,middle,andend'(p.116).Qualityoflifemeasuresarerelevanttothisconceptioninsofarastheyhighlightthe healthrelatedpreconditionsofabiographicallife.Health,broadlydefinedsothatitembracessocialandenvironmentalfactors,istreatedasameanstotheendofa meaningfullife.AsBrocknotes,qualityoflifemeasurestypicallyfocusonthepatient'sdysfunctionsor,inMcEwen'sdefenceoftheNottinghamHealthProfile(NHP),

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thepatient'sneedforhealthcare,whereneedistobeunderstoodintermsofthediscrepancyofthemeasuredhealthstatefromsomemoreorlesswelldefinednorm ofgoodhealth.13Assuch,qualityoflifemeasuresreflecttheconditionstowhichhealthcareresourcesmustbedirectedinordertomaintainthepossibilityofthe patientleadinganormal(andthusmeaningful)life. Whiletheprovisionofnormalhealthmayindeedfacilitateameaningfullife,itcannotbearguedthattheabsenceofnormal(orgood)healthnecessarilyentailsa meaninglessorworthlesslife.Tomakethisequationistofallintothetrap,identifiedbyAiken,ofonlyconsideringtheideallifeasworthwhile.Itmayalsobesuggested thatitisthetrapintowhichthemaincharacterofWhoseLifeisitAnyway?falls.AsBrockisatpainstopointout,theeffectofdisability(ordysfunction)ona person'slifewillvary,dependingonthegoalsshehasinlife,andherflexibilityinreinterpretingandmodifyingthosegoals(p.123).Moreprecisely,thedisabilitymay itselfbeseenasposingachallengethatgivesnewmeaningtoone'slife.KagawaSinger'sstudyofthedifferentwaysinwhichAngloAmericansandJapanese Americanscopewithterminalcancerisilluminating.Shenotesthatthese'individualsusedadefinitionofhealthwhichwasbasedupontheirabilitytomaintainasense ofintegrityasproductive,ableandvaluedindividualswithintheirsocialspheres,despitetheirphysicalcondition.'Awomanwithmetastaticcanceristhusableto declarethat'Iamreallyveryhealthy.Ijusthavethisproblem,butIamstillme'.14KagawaSingerconcludesthat,whileindividualsdrewonthedifferentresources providedforthembytheir(JapaneseorAngloAmerican)cultures,theyalltendedtomeasuretheirselfworth,andthusthedegreetowhichtheirlivesremained meaningful,bytheirabilitytofulfilsocialroles,inspiteoftheirillnesses(p.303). ItisnotablethatKagawaSinger'ssubjectsdidnotfindtheimminenceofdeath,andthusthefinitudeoftheirremaininglives,disruptiveoftheirsenseoflivinga meaningfullife.Facedwithafinitefuture,patientsreassessedtheprioritiesintheirlives,sothatlongtermandabstractobjectiveswerereplacedbyshorttermand concretegoals,suchastheenjoymentoffamilylife.ThiscontrastswithJohnHarris'sassertionsthattheimminenceofdeathmerelydiscolourslife,leavingit'joyless', andthat

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onlytheopenendednessoflifemakesitworthliving.Heconcludesthatif'lifehadashortandfinite(ratherthanindefinite)future,mostthingswouldnotseemtobe worthdoingandthewholesenseoftheworthoflifeasanenterprisewouldevaporate'.15Theseassertionsrestuneasilywithhisdefenceofthepreservationoflife (providingthatthepatientwantstolive),evenifthatlifeisofminimalquality.ItmaybesuggestedthatHarrishereremainsinsensitivetothesubtletyoftheconceptof biographicallife.Fromhisperspective,deathcanonlybepresentedastheforestallinganddisruptionofameaningfullife.Deathitselfismeaninglessandundignified. Deaththerebybecomessomethingtobefeared,andthuspermanentlydeferred.Thetransformationofaferventwishtoliveintoaferventwishnottodiesuggestsa failuretoreflectupontheculturalresourcesthatareavailabletoindividualstoallowthemtomakesenseofprematuredeath.TheinitialintuitiveattractionofHarris's argumentmaywellrestuponthefactthathealthypeopleareroutinelyunawareofsuchresources. Inthelightofasimilardiscussion,Brockindicatestheimportanceoftheinclusionwithinqualityoflifemeasuresofsomeindicationofthepatient'sresponsetohisor herillness(andspecifically,itmaybeadded,tochronicorterminalillness).TheQualityofLifeIndexconsidersthepatient's'outlook',andtheSicknessImpactProfile, alittlelessspecifically,records'emotionalbehaviour'.TheNottinghamHealthProfilesimilarlycontainsstatementsrelatingtoemotionalreactionsandsocialisolation.It mayhoweverbestressedthatthemererecognitionofsuchparametersisoflesssignificancethantheimportancetheyaregiven,andthewayinwhichthatimportance isderivedandstatisticallyrecorded(orweighted).Again,ifthisweightingdependsuponthesurveyingofthegeneralpopulation,andthatpopulationlacksthe resourcestocopemeaningfullywithterminalillnessanddeath,theweightingmaydistorttheactualexperienceofillness,andthustheworthoflifelivedinthefaceof terminalillness. 5 Conclusion WhiletheoriginalQALYmatrixdoesnotobviouslyrecordthepatient'sresponsetoillnessintermsofmeaning(exceptinsofar

Page42

asitissweptupinsubjectivedistress),theweightingofstatesasworsethandeathissignificant.Whileingeneralitcannotbedeniedthatbeingconfinedtobedin severepainisundesirable,itisnotinconceivablethatcertainindividualswillhavethepersonalandculturalresourcesnecessarytocope,andgivemeaninganddignity tothiscondition.Thisis,ineffect,torepeattheinitialcriticismofMenzel.TheinterpretationofQALYsasthereflectionofapublicconsensusontheminimal conditionsofaworthwhilelifetendstoleavetheexceptionalindividualvulnerable.Further,itistosuggestthatanegativeweightingdoesnotmerelyindicatea worthlesslife,butrathertheneedforculturalaswellasmedicalresourcestorestoremeaningtosuchlife.Therewill,inevitably,behealthstatesinwhichthepatient cannotbenefitfromsuchresources,whichistosay,wheretheemotionalcostsofalowqualityoflifeareexcessiveforthepatienthimorherself.Aqualityoflife measurethatissensitivetothecentralityofbiographicallifemayfacilitatetherecognitionofsuchconditions. Notes

1 2

RichardG.Brooks,HealthStatusandQualityofLifeMeasurement(Lund,SwedishInstituteforHealthEconomics,1991).

RachelRosserandPaulKind,'Ascaleofvaluationsofstatesofillness:isthereasocialconsensus?',InternationalJournalofEpidemiology,7(4)(1978),347 58.
3

PaulKind,RachelRosserandAlanWilliams,'ValuationofQualityofLife:somepsychometricevidence',inM.W.JonesLee(ed.),TheValueofLifeandSafety (Leiden,NorthHollandPublishing,1982),15970.
4 5

TheEuroQolGroup,'EuroQolanewfacilityforthemeasurementofhealthrelatedqualityoflife',HealthPolicy,16(1990),199208.

M.S.Salek,'Measuringthequalityoflifeofpatientswithskindisease',inStuartR.WalkerandRachelM.Rosser(eds.),QualityofLifeAssessment.KeyIssues inthe1990s(Dordrecht,BostonandLondon,Kluwer,1993)35570.
6 7

AlanWilliams,Economics,QALYsandMedicalEthics:AHealthEconomist'sPerspective(YorkCentreforHealthEconomics,1994). PaulT.Menzel,StrongMedicine:TheEthicalRationingofHealthCare(NewYorkandOxford,OxfordUniversityPress,1990).

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8 9

JohnHarris,'QALYfyingthevalueoflife',JournalofMedicalEthics,13(1987),11723.

RogerCrisp,'Decidingwhowilldie:QALYsandpoliticaltheory',Politics,9(1)(1989),315DavidLamb,'Prioritiesinhealthcare:replytoLewisandCharney', JournalofMedicalEthics,15(1989),334.
10

C.F.McCartneyandD.B.Larson,'Qualityoflifeinpatientswithgynecologiccancer',Cancer,60(Suppl.)(1987),2,12936,citedinBrooks,HealthStatus, 10.
11 12

WilliamAiken,'Thequalityoflife',AppliedPhilosophy,1(1982),2636,at303.

DanBrock,'Qualityoflifemeasuresinhealthcareandmedicalethics'.inMarthaNussbaumandAmartyaSen(eds.),TheQualityofLife(Oxford,Clarendon Press,1993),95132,at123.
13 14 15

JamesMcEwen,'TheNottinghamshireHealthProfile',inWalkerandRosser(eds.),QualityofLifeAssessment,11130,at97. MarjorieKagawaSinger,'Redefininghealth:livingwithcancer',SocialScienceandMedicine,37(3)(1993),295304,at295. JohnHarris,TheValueofLife(London,Routledge,1985),100.

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4 TheLaw'sImpact
MervynLynn Thelawimpactsuponthosefacingdeathanalogouslytoitsimpactonthelivingwellitlimitswhattheycandoandwhatmaylawfullybedonetothem.Law,whether asaresultofparliamentaryenactmentor,morecommonlyinthissphere,bydevelopmentofjudgemadeCommonLaw,canprotectbyimposingrestraintsuponthe actionsofothersorbyimposingadutyuponotherstoacttothebenefitoftherecipient. Increatinganddevelopingstandardsofbehaviour,theCommonLawseekstofollow,oroccasionallytolead,publicopinion,asperceivedbythejudiciary.Inthe sphereofthetreatmentoftheillandthedying,theboundarieswhichthelawimposesonthebehaviourofotherscanfrequentlybeseentoreflectviewswhichcanbe tracedtoJudaeoChristianteaching.Theseviewsarealsodiscernibleatthecoreofgoodmedicalpractice.Goodmedicalpracticeis,inturn,alsoayardstickutilized bythejudiciaryindeterminingthescopeofthedutiesofhealthcareprofessionalsandthelimitsofmedicalinterference. Thus,thereisacircularprocessinwhichthejudges,indeclaringconductlawfulwhichinturnformsabaselineforgoodmedicalpracticelooktoseewhatmedical practiceandmedicalandethicalreasoningcurrentlysanction.1 Whatmedicalpracticepermitsatanygiventimeisaproductbothofethicalreasoning,drawnfrom traditional,andoftenreligious,views,andofaninterpretationofthelaw.Thelawcanthussimultaneouslyleadandbeledbymedicalpractices.Aconcreteexampleof thisisthewellknowncaseofAnthonyBland,whosedoctorshaddecidedtoceasetreatingandfeedinghimafterseveralyearsinwhichhewasinapersistent vegetativestate.Thatresponsiblemedical

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practitionersreachedsuchaconclusionwasinstrumentalintheHighCourt,theCourtofAppealandtheHouseofLords,allcomingtothesameconclusionthatitwas notonlygoodmedicalpracticetowithdrawfeedingfrompatientswhoareirrevocablyinPVS,butthatitwasalsolegallypermissible.Indeed,someoftheirLordships wentsofarastodeclarethattocontinuetotreatandfeedsomeonewhocouldderivenobenefitfromsuchactionswouldbeunlawful,bothasaciviltrespassandasa criminalassault.2 Wewillreturntothislandmarkdecisionlaterinthechapter. 1 TheDyingCompetentAdult Acompetentadultwhobelievesthathisorherdeathispendingintheimmediatelyforeseeablefuturemaywisheithertodelaydeathforaslongaspossibleorto accelerateit.Suchapersonmaywishtotakestepstoachieveeitheroftheseendswhichmayinvolvetheassistanceofothers. Thelawgenerallypermitsanycompetentindividualtoexpendhisorherresourceswithfewrestrictions,exceptwhereitimpactsadverselyonothers.However,whilst thosewhowishtoexpeditetheirowndeathsmaykillthemselves,theymaynotlawfullyengagethehelpofotherstoassistinwhatthelawregardsasselfkilling.Since theenactmentoftheSuicideAct1961,althoughithasceasedtobeacriminaloffenceeithertokillortoattempttokilloneself,itremainsanoffencetoassistsomeone else,ortoprocureanother,totakehisorherownlife.3 Aswithnearlyallcriminaloffences,aninnocentactorwho,withoutknowledgeoftheprincipalactor'smotivation,unwittinglyassiststheprincipalinawaywhichhelps thelattertobringabouthisowndeath,willnotnormallyfallfoulofthecriminallaw.Whethersomeoneisaninnocentagentinsuchaventurewouldultimatelybe determinedbyajury,basedontheavailableevidence,applyingajury'scommonsensetothefactsasestablished. Theeffectoftheoffenceofaidingandabettinganother'ssuicideistodepriveacompetentadultoftheassistancewhichmaybenecessarytosecurehisorherpeaceful death.Thismaypreventthemfromdyingeitheratthetimeorinthemannerwhich,asautonomousbeings,theywouldhaveselected.Whilstit

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maybeunderstandablethatthelawshouldnotcompeloneindividualtoassistanothertokillthatother,itisnoteasytodefendtheprohibitiononawillingvolunteer whounderstandsanother'swishtocontrolanddeterminethetimeandstyleofhisorherdeathandwhoishappytofacilitatethatchoice. Thelawrecognizesthatsanctityoflife,asaprinciple,cannottrumpanindividual'srighttoselfdeterminationbytheirownunaidedhand,soitisdifficulttoacceptthat asaprincipleitshoulddenywillinghelptoanindividualwhosedeathwilleitheronlybepossiblewiththathelporwillbemadeeasierandbetterbyit.Itseemsthat behindthelaw'sprohibitiononassistinganotherwhowisheshisorherowndeathisafearofencouragingtodiethosewhodonotwishtoorofoverzealoushelp. Thereisundeniablescopeforabuseoftheoldbytheyoungoftheveryillbytheirgreedyortiredcarersoroftheeasilypersuadedbythemanipulative.However,to denywhatmayappeartomanytobetheirultimaterightofautonomytochoosehowandwhentheydiemerelyinordertoensurethatthereisnotabuseofthat entitlement,seemsinadequate.Parentsandguardianshaverightsofcontrolovertheirchildren:forexample,theycananddodetermineifandwhentheirchildren receivemedicaltreatment.4 Clearlyaparentcouldabusethisright,orduty,tothedetrimentofthechild.Thispotentialforabuseisrecognized,andthereare mechanismsforeitherbypassingtheparent'srightofvetobycareorwardshipproceedings,ortoprosecuteandpunishthosewhoabuseit. Doctorsareassubjecttocriminalliabilityasanyothercitizen.Adoctorcannotthereforeaccedetoapatient'srequesttoacceleratethepatient'sdeathbydoing anythingwhichwouldachievethatobjective,unlessitisotherwisemedicallyappropriatetreatment.Since1957,atleast,thecourtshaveacceptedthelawfulnessof actionsoromissionswhichmay,asabyproductoftheirprimarygoal,havetheeffectofacceleratingapatient'sdeath.5 Drugs,suchasmorphine,usedpalliativelyto curtailadyingpatient'ssuffering,are,undercertainconditions,knowntoexpeditedeath. Itisinsuchdoubleeffectsituationsthatanalysisofcriminalliabilitybecomesmuddied.Tointendeither,toacceleratethedeathofapatientortoassistthepatientto doso,would,primafacie,satisfythestateofmindrequiredtoprosecuteformurderor

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aidingandabettingsuicide.Themeaningofintentionisundefinedincriminallaw,butthereisawealthofcaselawtosupporttwopropositionswhicharegermaneto theestablishmentofintention.6 Firstly,apersonmayintendtoachievemorethanoneresultsothattointendtorelievepaindoesnotprecludetheestablishmentofan intentionthereby,orasanunavoidableconsequence,toacceleratedeath.Secondly,apersonmayintendthatwhichsheorhedidnot'desire'.Sincetheideaof intendingtoachievearesult,whichonedoesnotwishtoachieve,seemsdysfunctional,tosaytheleast,ifnotdownrightabsurd,thismustbereadwiththesuffix'forits ownsake',ifitistomakeanysense.Soread,itmayappeartobevirtuallyarestatementofthefirstproposition. Thesamecaselawestablishesthat,whereanactorforeseesaparticularresultasa'natural'consequenceoftheproposedaction,orthatitisforeseenasa'virtually certain'result,thenthatissufficienttoenableajurytoconcludethattheresultwasintended.Itfollowsthatitcanbenodefencetoachargeofmurdertoarguethat therewasanulteriorpurposefortheaction,ifdeathwasforeseenasthevirtuallycertainoutcomeoftheaction.However,thisrealizationliesuneasilywiththe previouslyidentifiedjudicialacceptanceoftheprincipleofdoubleeffectinrelationtotheadministrationofpalliativedrugswhichareknowntoacceleratedeathasa virtualcertainty.ItmaybethatonlywherethereisnopossibletherapeuticpurposeachievablebytheactionasinthecaseofDrCoxthatajurywouldconclude thattheactionofahealthcareprofessionalwhichresultedindeath(andwhichthatprofessionalrecognizedwoulddosoasavirtualcertainty)wasintendedtokilland thuswasmurder. Inpractice,healthcareprofessionalswhoactinwayswhichwillcausethedeathoftheirpatientstobeaccelerated,arenotprosecutedifthereisevidencetoshow thattheirbehaviourwascompatiblewithgoodmedicalpracticeashavingeitheranotherwisetherapeuticpurpose,orwasinthebestinterestsoftheirpatients.If however,asinthe1992caseofDrCox,7 theactionscanhavenosuchpurposeandare,ontheevidence,designedtohastendeath,then,notwithstandingeitherthe patient'swishfordeathtobehastenedorthatthedoctorismotivatedbythegreatestdegreeofcompassion,thedoctorwillbeguiltyofcausingthe

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patient'sdeath.Ifdiscovered,suchadoctorwouldbeliabletofaceaprosecutionformanslaughterormurder. Insituationsnotinvolvingthedeathofapatient,itispossibleforadoctor(likeanyotherindividual)toarguethatthecircumstancesinwhichheorsheactedweresuch astomakethoseactionsnecessary,eventhoughprimafaciecriminal.In1993DrBiezaneksuccessfullythwartedaprosecutionforsupplyingcannabistoher daughterwhosufferedfromanunspecifiedconditionforwhich,DrBiezanekclaimed,onlycannabisbroughtrelief.8 Hercounselarguedthatsheactedoutof necessityinordertosaveherdaughter'slife.In1985VictoriaGillicksoughttosecureadeclarationthatitwouldbeunlawfulforaGPtosupplyaminorfemale,under theageofsexualconsent,withcontraceptionorcontraceptiveadvicewithouttheconsentofherparentorguardian.InacasewhichwentallthewaytotheHouseof Lords,9 oneoftheargumentspresentedwasthatforadoctortosoactwouldbetoaidandabettheoffenceofunlawfulsexualintercourse,sincethatwouldbeoneof thenaturalconsequencesoftheminorfemaleusingcontraception.Notonlywoulditbeanaturalconsequence,butonewhichanydoctorwouldrecognizeasanatural consequence.Therefore,thedoctorwouldpossessastateofmindsufficienttoprosecuteherorhimasanaccomplicetotheoffenceofunlawfulsexualintercourse whichwouldbecommittedbythemanwithwhomthefemaleminorpatienthadsexualintercourse. Inrejectingthisargument,theHouseofLordsdemonstrated,notforthefirsttime,thejudicialwillingnesstolethealthcareprofessionalsoffthehookongroundsof pragmatism.Thedoctor'spurpose,saidtheirLordships,wouldbetopreventanunwantedpregnancy,ratherthantoencourageoraidtheactofunlawfulsexual intercoursewhichwouldbeaprerequisitetosuchapregnancy.Itisdifficulttoenvisageacourtacceptingthisulteriormotivationargumentfromanonmedical defendant,incircumstanceswherethereisnodenialofthecriminaloutcomeorofthehelpwhichthedefendant'sactrepresentedtotheperpetratorofthecriminalact. Thecasewasalsosignificantforthelightwhichitshedonjudicialviewsofthemembersofthemedicalprofession.NoteworthyisLordScarman'sview10thatthe bonafideexercisebyadoctorofhismedicaljudgmentwastheverynegationofthestateof

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mindrequiredbythecriminallawforconvictionofanaccomplice.Inotherwords,ifitwasbonafidebymedicalstandardsitcouldnotcontravenethecriminallaw.In itscontext,theremarkcameclosetoimplyingthatinpractisingmedicinedoctorswereabovecriminalliability.If,however,weanalysethestatement,itisclearly tautological,forifadoctor'sconductwouldbecontrarytothecriminallaw,itnecessarilycannotbebonafidebehaviour.Thecriminallawprovidesnogeneral immunitytodoctorstoengageincriminalconductforgoodreasonsorforbadastheconvictionofDrCoxreaffirmed.Thisis,ofcourse,subjecttothedefenceof necessity,asdiscussed,abovewhichmaypermitactionswhich,outsidethecircumstancesinducingthenecessitytoact,wouldbeunlawful.Necessity,however, cannotbeusedasadefencetoachargeofmurder,11exceptwherethekillingwasnecessitatedbytheneedtosaveone'sownlife. 2 ActsVersusOmissions Thecriminallawonlyinfrequentlyimposesanobligationtoact,asopposedtoanobligationtodesistfromaction.Oneoftheinstanceswhereitdoessoiswherethere isidentifiedadutytoact.Thismaybearesultofacontractorofaspecialrelationshipexistingbetweentwoormorepeople.Regardlessofanyspecificcontractual termbetweendoctorsandeithertheiremployersortheirpatients,itisclearthatalldoctorshavesucharelationshipwiththosewhomtheyacceptastheirpatients.This dutymaymandatecertainactionsincertaincircumstances. Wherethepatientiscompetent,thedoctor'sminimumdutyistoavoideitheractionoranomissionwhichwouldconstitute'grossnegligence'.Adoctorwhofailsto avoidsuchandwhoistherebyresponsibleforthedeathofapatientcanfaceachargeofmanslaughter12or,iftheactionoromissionwasintendedtocausethe patient'sdeath,achargeofmurder.(Providingthepatientdoesnotdie,thereisprobablynocriminaloffencecommittedbythemerelygrosslynegligentdoctor, regardlessoftheharmwhichresults.)13 Whatconstitutes'grossnegligence'isundefinedincriminallawandisleftforthetrialjury,guidedbythejudge'ssummingup,todecide.Itisclearthatwithinamedical contextandnearlyallofthereportedcasesinvolvehealthcarepersonnela

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verygreatdeparturefromproperpracticeandstandardsisrequiredbeforeajurywillbeencouragedtoconvictadoctorofmanslaughteronthegroundsofgross negligence.14Threerecentconvictionswerereviewedintwoseparateappeals.15Theseappellatecourtshaveprovidedguidanceforfuturejurieswhich,thoughfar fromclear,indicatesthatthebehaviourneededtoconstitutegrossnegligencemustbeextremebehaviourandfargreaterthanwouldbeneededtosatisfythecivillaw's requirementsfornegligence. 3 CivilLaw Thusfar,theeffectonlyofthecriminallawhasbeenexaminedasamechanismofcontrolandrestraintupontheactsoromissionsofdoctors,butthecivillawalso,by determiningwhatisacceptableandunacceptablemedicalpractice,operatesasaconstraintuponthebehaviourofhealthcareprofessionals. Thelawoftrespasspreventsanytreatmentorinvasionwhichinvolvesatouchingofthepatient'sbodywithoutconsent,providingthatthepatientiscompetenteitherto consentortorefusethetreatmentorinvasion.Trespass,whichhasitscriminalcounterpartinassaultandbattery,enshrinestheprinciplethatcompetentindividuals havetotalandcompletecontroloverpermissionforanyandallbodilyinterferencewiththeirperson.Itprohibits,uponthesamepainofanactionforfinancial damages,forciblyinjectingapatient,asitdoesthebestowingofanunwantedkiss.Theconsentofacompetentrecipientishoweveracompletedefence,exceptwhere thelawdeniestherecipienttherighttoconsent. LongstandingstatutoryprohibitionsoncertaintransactionswithfactuallyconsentingminorshaverecentlybeensupplementedbyarulingoftheHouseofLords16that evenacompetentadultcannotconsenttobeingtherecipientofactualbodilyharmoutsidecertainspecifiedandrecognizedexceptions,allofwhichweresaidtobe'in thepublicinterest'.Amongstthesewas'reasonablesurgicalinterference'.17 Althoughtheconceptofwhatisreasonableiscapableofchangingovertimeandwithinvaryingcircumstances,itisclearthat,forexample,surgerywhichinvolves transplantingvitalorgansfromalivingpersonisnotpresentlyviewedasreasonable.

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Itwouldthereforematterneitherthatthedonorwishedthetransplantationtotakeplace,andfreelyconsented,northatthesavingofthelifeoftherecipientmightbe viewedasinthepublicinterest.Itwould,atpresent,beunlawfulifitresultedinthedeathofthedonor.Itwouldbekillingthedonorand,assuch,anassault,atrespass and,ofcourse,murder.Yettheideaoftransplantingtheorgansof,say,anirrevocablycomatosepatientorananencephalicneonatemightmakesoundethical(and financial)senseinasituationofscarceresources.Itisforeseeablethatacourtwill,possiblyquitesoon,beaskedtodeclaretransplantationfromsuchanindividualto belawful.Ifacourtweresotodeclare,itwouldthenbelogicallypossibletoarguethatwhatcanbedonewithoutconsent,inthecaseofanincompetent,irrevocably comatose,patient,oughttobesomethingtowhichacompetentpatient,shouldbeabletogivevalidconsent.However,asthedecisioninBland'scasedemonstrated, logicisnotalwaysanecessaryfeatureorprerequisiteofjudicialdecisionmaking.18 Withinamedicalcontext,therearenoreporteddecisionsofwhatconstitutesreasonablesurgicalinterference,but,forexample,surgerywhichwasperformedsolelyin ordertorendersomeoneunfittoserveinthearmedforceswouldbecontrarytopublicinterestandthereforeoutsidetheexception.19Afortiorisurgerydesignedto causetherecipient'sdeathwouldalsonotbereasonable. Wehavestrayedbackintocriminalliabilityhereanditistimetoreturnandfurtherexaminethecivillawasarestraintuponhowdoctorsmaytreatthedying.Thereisa civiltortofnegligencewhichhas,atitscore,theconceptofreasonableness.Negligencerequiresproofoflossorinjuryarisingfrom,andcausedby,abreachofaduty ofcareowedtotheinjuredperson.Betweenahealthcareprofessionalandapatientthereisundoubtedlysuchadutyofcareadutynottocauseforeseeableharm.20 Indeterminingwhetherthatdutyhasbeenbreached,thecourtsasktheinjuredparty(theplaintiff)toprove,onthebalanceofprobabilities,thatnoreasonableperson inthesamecallingastheallegedtortfeasor(thedefendant)wouldhaveacted,orfailedtoact,asheorsheacted,orfailedtoact.Theyardstick,knownasthe'Bolam Rule',effectivelyallowsthemedicalprofessiontodictateitsownstandardsofcareandtreatment.

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For,solongasothersintheprofessionwouldhavebehavedtotheplaintiffasthedefendantdid,thenthecourtswillingeneralnotholdthatbehaviournegligent.Only inrareandexceptionalcircumstanceswillthecourtsadjudicatebetweentwoormoreschoolsofthoughtastowhichisbettermedicalpractice.21 Preciselybecauseitcanbesodifficulttoestablishnegligence,intheabsenceoftheclearestevidenceofitwheretheevidencespeaksforitself(resipsaloquitur) thetortofnegligencewouldnotseemtobeastrongrestraintonhealthcareprofessionals'behaviour.Infact,thereisasurprisingdegreeoffearofnegligenceactions amongmembersofthemedicalprofession.Thisfearisdisproportionatetothelikelihoodofsuchactionsbeingsuccessfullypursuedagainstthem.AllNHSemployees areindemnifiedagainstsuchclaims,sotheactionsareineffectdefendedbyhealthauthoritiesortheinsuranceorganizationswhospecializeinsuchindemnification. Althoughitwasacriminaltrialandthechargewasattemptedmurder,thecaseofLeonardArthurin1981providesanextremeexampleofhow,seemingly,eventhe mostaberrantbehaviourbyadoctorcanfindotherstosupportit,andthustoprecludetheestablishmentofnegligenceincivilactions.DrArthur,attherequestofthe parents,withheldnutritionfromanewbornsufferingfromDown'sSyndrome,withtheexpectationandintentionthatitwoulddiewithinabriefperiodasindeedit did.EminentpaediatricianstookthewitnessstandtogiveevidenceoftheacceptabilityofDrArthur'sactions,whichhadincludedtheadministrationofananalgesic andsedativetotheneonateinordertopreventitindicatingitshunger. Thecaseisadditionallyillustrativeofthestrongsignificancewhichthejudgesaccordtotheacceptabilityofbehaviourwithinthemedicalprofessionindetermining whetherthatbehaviourcrossestheboundaryoflegality.IntheArthurcasethejuryheardthetrialjudgetellthem:
youwillthinklongandhardbeforedecidingthatdoctorsoftheeminencewehaveheard,representingtoyouwhatmedicalethicsare,andapparentlyhavebeenoveraperiodof timeinthatgreatprofession,haveevolvedstandardswhicharetantamounttocommittingacrime.22

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Thejuryobliginglyfoundthedefendantnotguiltyofattemptingtomurdertheneonate,whoseregimeofnontreatment,designedtoenditslife,DrArthurhadordered andimplemented.IntheHouseofCommonstheAttorneyGeneralsaidthatthedecisiondidnotrepresentanychangeinthelawofmurder. 4 TheIncompetentPatient Apatientwhosedeathisimminentorforeseeablemay,byvirtueofthatcondition,oranother,beunableeithertogiveconsenttotreatmentortoexpressawishabout thewithholdingoftreatment.Suchapatientislegallyincompetent.Incompetencemaybeaproductofamedicalconditionorofimmaturity,whetherintellectualor biological,orboth. Untiltheageofeighteenchildrenareconsideredminorsinlaw,althoughbystatutefromtheageof16theycangivefullconsenttoanymedicaltreatment.23Below thatagetheymaybeabletogiveconsent,dependinguponwhethertheyarecapableofunderstandingthenatureoftheproposedtreatmentormedicalinvasion,its risksandbenefitstothem,andofalternatives.Whetherachildissocapablewilldependbothuponthecomplexityofwhatneedstobeunderstoodandtheintellectual capabilityofthechild,whichmayofcoursebeaffectedbytheexistenceofthemedicalconditionwhichcallsforthetreatment.Achildwhoisdyingrisksbeingviewed asunabletocomprehendtheemotionalconceptofdeath,whichadultssofrequentlycannoteasilycometotermswith,andthereforenotcompetenttomakeadecision whichwouldhastenordelaythatdeath.Aparentorguardianwouldthenbeinvitedtodecide,but,ofcourse,thisprecludestheautonomyofthechildandtheir decisionneednotnecessarilyreflectthewishes,ifany,ofthechild.Aparentmaywishtotryeverypossibletreatmentoptioninordertoprolongachild'slife,butitis thechildwhoendurestheinvasionandpainofthoseoptions.Achild,likeanadult,isentitledtosay,'I'vehadenough,Idon'twishtofightanylonger.'Achild expressingsuchawishisentitledtohavethatwishrespectedbydoctors,regardlessofcontraryparentalviews. Itisnotonlyinthecaseofachilddeemedincompetentthatparentalpreferencesmayprevail.In1991theCourtofAppealheld24thattherefusaloftreatment,by evenacompetentminor,

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couldbeoverriddenbyhealthcareprofessionalsifaparentorguardiangivesconsenttothatwhichthecompetentchildrefuses.Undertheageofeighteen,therefore, nominorcanbeviewedastrulyautonomous,forthoughtheirconsenttotreatmentwillrenderthattreatmentlawful,theirrefusal,bycomparison,carriesverylittlelegal weight,sinceitcanbevetoedbyaparentorguardian.Thatsaid,ahealthcareprofessionalmusttakeaccountoftherefusalofacompetentminorindecidingwhether togoaheadwiththeproposedtreatment.Totreatincircumstanceswhereitwouldbeunreasonabletodosowouldconstitutenegligence,thoughnottrespass.Health careprofessionals,however,maybeeasilypersuadedbyarticulateparentsthattheirviewsshouldprevailoverthoseofadyingchild.Theright,ofanyonewith parentalresponsibilityforachild,togiveconsentformedicaltreatmentofthatchildisaproductofthedutyowedbythatpersontothechild.Accordingly,theduty mustbeexercisedinthebestinterestsofthechild,andanyconsentwhichcanbeshowntobecontrarytothechild'sbestinterestswouldbeanultraviresexerciseof parentalresponsibilityandthereforevoid.Adoctoractingonthebasisofsuchconsentwouldactunlawfully:therebeingnotrueconsenttothetreatment,itwould constituteatrespass. Atfirst,itmayappearunlikelythatadoctorwouldnotonlyproposetreatmentwhichwouldnotbeinthechild'sbestinterests,butthataparentwouldalsoconsentto it.However,thisdependsonhowweinterpretthebestinterestsofanother.Weknow,orbelieveweknow,whatis,andwhatisnot,inourownbestinterestsand maytooeasilyinferthatthisappliesmutatismutandistoachild.Tomanyadultstheideaofsuicideisunthinkableorincomprehensible,thedesiretodiealientothem. Itmightbeverydifficultforsuchadultstorecognizethepossibilitythattheirchildcouldholdacontraryview.They,ofcourse,arenotlivingthelifefromwhichthe childmightseekescape,normaytheysharethefearlessnesswithwhichachildmayfacedeath. ThedecisionintheBlandcasehasfirmlyestablishedthatthetreatmentofincompetentadultpatientsisalsosubjecttothesametestof'bestinterests'.25Aswith children,thereisadangerthatitisspuriouslyclearwhattheirbestinterestsare.Yetpreciselybecausetheyareincompetent,itmaybeextremelydifficulttoseewhat mightbeinthebestinterestsofthose

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individuals.'IfIhadterminalcancer/Down'sSyndrome,IknowwhatIwould/wouldnotwant'ignoresthecrucialrealitythatthespeakerdoesnot,infact,sufferfrom theconditionandmayonlyinadequatelybeabletoimaginewhatitwouldbeliketosufferfromit. Wheretheincompetentpatienthaspreviouslybeencompetentandhasexpressedaviewastohowtheywishtobetreatedastheendapproaches,then,dependingon whethertheactualprevailingcircumstancesmatchthosepreviouslyenvisagedbythepatient,itmaybeappropriatetobeguidedbythosepreviouslyexpressedviews indecidingwhetherorhowtotreatthepatientintheterminalphaseoflife.26 Thepersonwhoattemptssuicidebutwhoisdiscoveredinarescuableconditionpresentsanobviousexampleofthedifficultyofdetermininganotherperson'sbest interests.Tosome,thesuicideattemptwillbea'cryforhelp'andnotaseriousintentionalactofattemptedselfdestruction.Toothers,itwillbeaproductof disorderedthinking,indicatingthatitwasnotacompetentlyorautonomouslymadedecision,whilsttoyetotherstheactmaybeprimafacieevidenceofadesireto diewhichtheindividualhadautonomouslydecidedwasinhisorherbestinterests.Ifthelatterviewprevails,thenlogicallyanytreatmenttorescuethepatientwillnot beinthatpatient'sbestinterestsand,thatbeingso,suchendeavourswouldbeunlawful.Thiswouldbeso,notwithstandingthattheymayhavebeennecessarytosave thepatient'slife.Insuchacasethepatientoughttobepermittedtodiefromtheselfinflictedharm.Ifeitheroftheformerviewsprevails,thenitwouldbeinthe patient'sbestintereststobetreatedandrestoredtohealth. Inpractice,itwillberarethatthereisclearandhardevidenceofadefinite,settledintentiontodie,andremedialtreatmentislikelytobeembarkedupon.Oneofthe consequencesofthelaw'sprohibitiononhelpingsomeonetocommitsuicideisthatmanyareforcedtoattemptitalone.Theevidenceoftheirintentiontokill themselves,whichanaccomplicecouldprovide,isthusrarelyavailable,foreven'suicidenotes'canbefaked,orcoercedfromthevictim,byapotentialmurderer. Successfulsuicidesinvolvefeelingsofanger,frustrationandguiltinthosewhowitnessthemorwhoarelefttolivewiththeconsequencesofthem.Notsurprisingly, perhaps,weareoften

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loathtoacceptthevalidityofsuicideasanexpressionofautonomy.Thetemptationtobelievethattheremusthavebeenapreferablealternativetoselfdestructionis commonand,inconsequence,thereislikelytobeastronginclinationtoacceptthatitwouldbeinthebestinterestsofasuicideattemptertobegivenanotherchance. Yetthehorrorofawakeningtomoreofthe'hellonearth'whichonethoughtonehadleftbehind,ratherthantothe'heaven'towhichonethoughtonewasgoing,is scarcelyimaginable,anddifficulttoviewasbeinginanyone'sbestinterests.Theonlywayinwhichitispossibletomaximizethechanceofone'sdeathwishesbeing respectedwhenoneisnolongercapableofexpressingthem,istomakeanadvanceddirective(a'livingwill'),whichweexaminelaterinthischapter. AnthonyBland,afterseveralyearsinPVS,wasaparadigmexampleoftheincompetentpatient.Asfaraswasascertainable,hewastotallyinsensate.Assuch,itwas allbutimpossibletoclaimthathehadanyinterests,bestorotherwise.Thisdidnotstopsomeoftheappellatejudgeswhoheardthecase(broughtbythehospitaltrust whoownedthehospitalinwhichhewascaredfor)tryingtodoso.Themorerobustamongthem,however,correctlyidentifiedthathecouldhavenobestinterests becausehehadnointerestsatall.27Whetherhelivedordiedwasirrelevanttohim,becausehewouldbeunawareofeithersituation.Noattemptwasmadeto evaluatethebenefitsofanypostdeathexistencewhichAnthonyBlandmighthave. Preciselybecausehehadnobestintereststobeservedbyanymedicaltreatment,allmedicaltreatmentdesignedtocontinuehisexistenceandthecourtsheldthat thisincludedfeedinghimwastreatmentwhich,becauseitwasnotinhisbestinterestsandbecausehecouldnotconsenttoit,wouldbeunlawful.Itwouldrepresent atortioustrespassincivillawandleastanassault,ifnotgrievousbodilyharm,incriminallaw. Thelogicofthecourts'reasoninginBlandshouldleadinexorablytothedeathsofalllongtermpatientsinPVSwhoseconditionwasdiagnosedasirrevocable.Forto continuetotreat,orinvasivelyfeed,suchpatientsistoactinamannerwhich,becauseitisnotinthebestinterestsofthosepatients,andisnotconsentedto,is unlawful.Atthetimeofthecaseitwasestimatedthattherewereover1,000suchpatientsinhospitalsthroughoutBritain.28

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Inreality,manyofthesepatientswillprobablycontinuetobefedandtreated.WhethertheywillfollowBlandintoeternityorremaininsensateintheirhospitalbeds will,wesuspect,dependontheviewsandwishesoftheirrelatives(Bland'sparentswishedforhisdeath)andthefinancialconstraintswithinthehealthauthorityor trust.Keepingpatientsaliveunnecessarily,possiblyevenunlawfullyalive,isanobviousexpensewhichcouldbeavoidedbythoseseekingtomakebetteruseoflimited resources.29 NoristhedecisioninBlandlogicallyorinexorablyconfinedtopatientsinirrevocablePVS.Itispossibletoarguethatcertainmedicalconditions,thoughnot immediatelyfatalinthemselves,causesuchextremesufferingandgiverisetosuchademonstrablyawfulandlowqualityoflifethatitisnotinthesufferer'sbest intereststocontinuetosuffer.30Thustreatmentdesignedtostabilizeormaintainthesufferer'sconditionisnotlawfulbecauseitistreatmentwhichfailsthebest intereststest.Thispresupposes(whichmaynotalwaysbethecase)thatthesufferercannotconsenttothetreatment,orrefuseit,andhasnotpreviouslyindicated,by meansofanadvanceddirective,thatheorshewishedtocontinuetobetreated. Itisimportanttostressthat,foranypatient,thequestionofwhattreatmenttheywillbeoffered,orwhethertheywillbeofferedanytreatment,isalmostexclusivelya matterofclinicaljudgementbythehealthcareprofessionalinchargeofthecase.Thereisnoabsoluteentitlementtotreatment,andunlessitcanbedemonstratedthat noreasonablehealthcareprofessionalwouldrefusetreatment(inwhichcasetonottreatwouldbenegligent),apatientcannotdemandtreatment.31Obviously,any privatecontractualarrangementbetweendoctorandpatientcouldincludesuchanexpressentitlementtospecifiedtreatment.Otherwisedoctorsarefreetodetermine, oncriteriaknownonlytothemselves,whethertotreat,orhowtotreat,anyindividualpatient.Increasingly,ascarcityofresourceswillplayapartinsuchdecision making.Isthereabed?Isthereacheaperalternative?Isitworthit,intermsofthelengthandlevelofbenefitswhichsuccessfultreatmentwouldproduceinthe patient?Acostbenefitanalysismightsuggestthatkeepingthedyingalivealittlelongermaynotbeasounduseoflimitedresources.Itmustbeemphasizedthatinsuch decisionmakingtheviewsofthe

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patientsortheirrelativeshavenonecessaryrole.Thatsaid,apatientmay,byrefusingtoconsenttoonetypeoftreatment,encourageadoctortosuggestanother whichispreferabletothepatientbutthereisnoobligationuponadoctortoofferthepatientwhorefusestreatmentanyalternativeexceptwhereitwouldbe negligenttofailtodoso.32.Thereisagrowingbodyofcaselawinwhichthecountry'smostseniorjudgesacknowledgethelegitimacyofdoctorstakingaccountofa scarcityofresourcesintheexerciseoftheirclinicaljudgementwhethertotreatparticularpatients.33 5 AdvanceDirectives Theideaofdetermininginadvancehowonewouldprefertobetreated,andespeciallyhowonewouldnotwishtobetreatedinfuture,butforeseen,circumstances hasgainedprominencewiththespreadofAids.ThosediagnosedaseitherHIVpositiveorsufferingfromAidscanreadilyenvisagetheirdying.Thereisalready evidencethattheterminalstagesmaybeextremelypainful.Takingtheopportunitytoindicatewhattreatmentonewouldbepreparedtoreceive,ornotreceive,andup towhatstagesofdeterioration,waspromotedbytheTerrenceHigginsTrust.InassociationwithKing'sCollege,London,theTrust,amongothers,hasproduceda 'livingwill'formwhichcanbecompletedbyanAidssufferer,oranyoneelse,inconjunctionwithhisorhermedicaladvisers,inwhichheorsheexpressesfuture treatmenthopesandlimitations. In1993thelegalityofsuchanadvanceddirectivewasestablishedinthecaseofReC,34inwhichtheHighCourtresolutelyupheldthebindingnatureofacompetently expressedwishuponthosewho,inthefuture,weremadeawareofit.However,thosewhowishtoexecutesuchadocument,withtheexpectationthatitwillbind futurecarers,willneedtobeabletoidentifywithsomedegreeofspecificityboththecircumstancesinwhichthedirectivewillbecomeoperativeandthenatureofwhat theyarewillingorunwillingtoundergo.Weremainscepticalastothefuturelikelihoodofthejudiciary,perhaps,tooeasilyfindingalacunainsuchadocument,which isalltoolikelytohavebeencompletedwithoutexpertlegaladvice.Thiswouldpermitajudgetodeclarethedocumentnottobebinding,becausethecircum

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stancesinwhichitwasenvisagedtooperatearenotsufficientlyclosetothoseprevailingatthetimewhenitsoperationisbeingconsidered,orthatthetreatment optionsnowavailableatthetimewhenthelivingwillisenvisagedascomingintooperationwereunknownandunknowableatthetimeofthedocument'sconstruction. Thewisetestatorwillupdateandrevisealivingwill,withhisorherdoctor'sadviceandhelp. Theremustalsobefearsconcerninggenuinechangesofmind.Willanoralrevocationofthewrittendocument,atthetimewhenthedocumentwouldotherwisehave becomeoperable,sufficetooverrideit?Willapatientwhoearliersignedfornotreatmentbeabletoconsenttoitvalidlyyearslaterwhenthetrueimminenceofdeath causesachangedperspective?TheBMA,notsurprisingly,wantssuchadvancedirectivestobeputonastatutoryfooting. 6 Transplantation Asthecertaintyofdeath'sapproachincreases,theideaofpenance,ormakingamendsforpastmisdeeds,isprobablynotuncommon.Altruismmaytakemanyforms, oneofwhichmaybeorgandonation. Whilstthereisnolegalimpedimenttoanyonegivingpermissionfortheuseoftheirorgansaftertheirdeath,themedicalrealityisthattheprocessofdyingmayrender certainvitalorgansunusable.Thisisparticularlythecasewith,forexample,anencephalicneonates.Intensivedrugtherapy,designedtodelaydeath,maylikewise impactnegativelyonthereusabilityofvitalorgans.Topermitsuchorganstoberemovedbeforedeathispresentlyunlawful.Indeed,insofarastheremovalwould causedeath,itwouldbemurder. Yettodiewhilstundergoinganephrectomyorothersurgicalproceduredesignedtoremoveandreusevitalorgans,mightbeanacceptableformofselfdetermination formany.Suchsurgicaldeathcombinesthesoughtforreleasefromthelingeringterminalphaseoflifewithapricelessgiftofaltruismbywhichothersmaylive.Froma medicalpointofviewsuchsurgery,althoughdirectlyleadingtothedeathofthedonor,hasnoneofthepurelydestructivequalitiesofalethalinjectionofanoxious, nontherapeuticsubstance.Norisitdevoidoftherapeuticvaluealbeit

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nottothedonor.Itwouldbesurgerycarriedoutforasociallyusefulpurpose,whichcouldbecomparedfavourablytoregimesofnontreatmentwhoseobjectiveisto causedeathbuttodosowithoutanydeliberateactwhichinducesdeath.35Suchnontreatmentregimesmay,ormaynot,causepaintothedying,butclearlydo causepaintothoseforcedtowatchtheslowprocessofthosewhomtheyloved,orcaredfor,starvingtodeath. 7 Conclusion Itisclearthattheprincipaleffectofjudicialinterpretationsofbothcivilandcriminallawistomaximizethefreedomofactionanddiscretionofthemedicalprofession, initstreatmentdecisionmaking,withrespecttotheillandthedying.Whilstadoctormustnotactnegligently,thisrepresentsaminimalrestraintsolongasmembersof theprofessioneffectivelydeterminethelegallyacceptablestandardsofreasonabletreatmentandreasonablenontreatment. Tothisgeneralconclusionthereisonesignificantexception.Itisthatdoctorsmayneveractinapositive,purposefulmannerinorderexclusivelytoacceleratea patient'sdeath.Thelaw,however,willsanctioncoincidental,butinevitable,hasteningofdeathasaconsequenceofanyreasonabletherapeuticintervention.Italso sanctionsregimesofnontreatment,ordeliberateomissions,theresultofwhich,andthepurposeofwhich,istoacceleratedeathprovidingonlythatsuchis reasonableasbeingwithinexisting,acceptedmedicalpractice. Fromtheperspectiveofthedyingpatient,thelawseemstoadoptaverypartisanposition.Thedoctorscaneffectivelydeterminehowandwhenthepatientdies,either bytreatingornottreatingthepatientinagivenway.Thepatients,bycontrast,aredeniedthisfinalautonomousexerciseofselfinterest.True,theycan,byrefusing foodortreatmentnecessaryforsurvival,hastentheirdeath,buttheyaredeniedtherighttodeterminepreciselyhowandwhentheywilldieiftheexecutionofsuch decisionmakinginvolvesassistance.Realistically,thescopeforselfdestruction,especiallywithinthecontrolledandmonitoredenvironmentofahealthcareinstitution, andwhichdoesnotinvolvetheassistanceoracquiescenceofthoseemployedtherein,maybeslim.Allthemoresoifwerecognizethatthedyingare

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verylikelytobeinaphysicallydebilitatedstate.36 Thelawdeniesthosewhowishtohavecontroloverthemannerandtimeoftheirdeaththehelpandsympathywhichmayclearlybevital.Thatitisdeniedtothem, withintheveryinstitutionsinwhichthatcaringassistancemightreasonablybeexpectedtobeavailable,seemscuriouslycruel.Thattheremightbescopeforabuseof suchapowerdemandsthatmechanismsofcontrolbeestablishedtominimizethatabuse.Itissurelynotbeyondthecompetenceofourlegislatorstodeviseand implementsuchcontrolsandsoonerratherthanlater.37 Notes

1 2 3 4 5 6 7 8 9

SeeRv.Arthur(1981)12BAILR1andAiredaleNHSTrustv.Bland[1993]1AllER859. SeeLordMustill,op.cit.,894. S.3. S.3TheChildrenAct1989.SeealsotheGillickcase,belown.9. Rv.(Bodkin)Adams[1957]CrimL.R.365. SeeRv.Moloney[1985]1AllER1025HLandRv.Nedrick[1986]3AllER1CA. Rv.Cox(1992)12BMLR38. TheTimes,14October1993. Gillickv.WestNorfolkAHA[1985]3AllER402. Atp.425. Rv.DudleyandStevens(1884)14QBD273. Rv.Adomako[1994]2AllER79HL.

10 11 12 13

ThoughdictainthenineteenthcenturycaseofRv.Curtis(1885)15CoxCC746at752suggestedthatonewhocausesbodilyinjurybyneglectwouldbe criminallyliable.
14 15

SeeRv.Bateman(1925)19Cr.App.R.8.

InRv.PrenticeandShulman[1993]4AllER935,theCourtofAppealquashedthemanslaughterconvictionsoftwodoctorswhohadrecklesslycausedan intravenousinjectiontobeadministeredintrathecallydespiteclearinstructionsindicatingitscorrectcourseofadministration.InRv.Adomako(above)theHouseof Lordsupheldthemanslaughterconvictionofananaesthetistwhohadfailedtomonitorhispatient'soxygensupply.

16 17

Rv.BrownandOthers[1993]2AllER75HL. Atp.98LordLowrycites,withapproval,thisphraseusedbyLordLaneQina1981case.LordJaunceyreferredto'necessarysurgery'

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atp.88.LordMustillreferredto'propermedicaltreatment'being'inacategoryofitsown'(atp.110).
18

LordBrowneWilkinsonrecognizedtheinherentabsenceofalogicaldistinctionbetweenallowingsomeone,whosedeathhadbeendeterminedtobeinhisorher bestinterests,todieslowlybyomission,andbringingaboutthatgooddeathbyapositiveact.Seeop.cit.,884.
19

ThehistoricalCommonLawoffenceofmaimingiswelldocumented.SeeSmithandHogan,CriminalLaw,7thedn(1992),409.InBrownLordMustill questionedwhetheritiscurrentlyanoffence,op.cit.,106.
20 21

SeedictaofLordHewartCJinBateman,op.cit.,12.

InSidawayv.GovernorsofBethlemRoyalHospitalandMaudsleyHospital[1985]1AllER643,theHouseofLordsrecognizedthatinrareandextreme situationsthecourtswouldevalutedifferingschoolsofmedicalthought.TherecentcaseofSmithv.TunbridgeWellsHA[1994]5MedLR334andtheunder reportedearliercaseofHucksv.Cole(1968)112Sol.Jol.483aresolitaryexamplesofjudicialwillingnesstodoso.

22 23 24 25 26 27 28

Op.cit.,22. FamilyLawReformAct1969. ReR.[1991]4AllER117CA. TheHouseofLordshadfirstidentifiedthistestinFv.WestBerkshireHA[1989]2AllER545HL. SeebelowonAdvancedDirectives. SeeLordMustill,op.cit.,894.

Therehavebeenatleasttwofurthercourtdeclarationsthatitwouldbelawfultowithdrawessentiallifesupportingtreatment.FrenchayHealthcareNHSTrustv. S[1994]2AllER403andSwindonandMarlboroughNHSTrustv.S,GuardianLawReport,10December1994.
29 30

Ithasbeenestimatedthatitmaypossiblycostinexcessof100millionperyeartocarefor1,000PVSpatients.

InthecaseofReJ[1990]3AllER930,theCourtofAppealrecognizedthatnottreatingsoastocausethedeathofafivemontholdgirlwithveryseverephysical andmentalhandicapwouldbeinherbestinterests.
31 32

SeeRv.SecretaryofStateforSocialServicesexparteHincks(1980)1BMLR93CA.SeealsoLordDonaldsonMRinReJ,op.cit.,934.

Apatientmightrefuseaparticulartreatmentforreligiousreasonsincircumstanceswherethealternativetreatment,whichwouldbeconsentedto,ismuchmore expensive.See'Whenotherssufferforyourfaith'(Independent,25October1994).

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33

SeeforexampleLordDonaldsonMRinReJ,op.cit.,934,andLordMustillintheBlandcase,op.cit.,893.LordBrownWilkinson,inthesamecase,thoughtit wasanissuewhichParliamentneededtoconsiderseep.879.
34 35 36

(1993)BMLR77. SuchregimesfeaturedintheArthurcaseandintheBlandcase.

Areportedsurveyof273(outof312)doctorswhoansweredthequestion,indicatedthat60percentofdoctorshavereceivedrequestsfrompatientstohasten theirdeath(Gruardian,20May1994).
37

TheStateofOregonwasthefirstintheworldtoenactlegislationtoenablecompetentadultswhoaredying,tobesuppliedwithlethaldosagesofnontherapeutic drugstobringaboutdeathbytheirownhandsTheDeathWithDignityAct1994.InFebruary1994,anallpartyHouseofLordsSelectCommitteeonMedical EthicsunanimouslyrejectedcallsfortheintroductionoflegislationtolegalizeeuthanasiainBritain.

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5 EthicalDecisionMakinginPalliativeCare: TheClinicalReality
IloraFinlay 1 Introduction Theclinicalpracticeofpalliativecareinvolvesthecareofpatientswhoarefacingdeath.TheWorldHealthOrganizationhasdefinedpalliativecareasfollows: 'Palliativecareistheactivetotalcareofpatientswhosediseaseisnotresponsivetocurativetreatment.'Controlofpain,Ofothersymptoms,andofpsychological, socialandspiritualproblems,isparamount.Thegoalofpalliativecareisachievementofthebestqualityoflifeforpatientsandtheirfamilies.Manyaspectsofpalliative carearealsoapplicableearlierinthecourseoftheillnessinconjunctionwithanticancertreatment. Manypatientscannotbecuredatthetimeofdiagnosisandthereforerequireapalliativeapproachtotheircarefromtheoutset.Cancerssuchascancerofthelungor pancreas,andneurologicaldiseasessuchasmotorneuronediseasecarryaverypoorprognosisandrespondpoorlyornotatalltotreatmentaimedatmodifyingthe diseaseprocess.Formanyothercancers,forexamplemetastaticbreastcancer,treatmentaimstocontrolthediseaseandthencethesymptomsitmayslightlyprolong lifebutwillnotcure.Asthediseaseprogresses,symptomstendtoworsenandbemorefrequent,sothepatientsneedmorespecialistpalliativecareinterventionto maintainqualityoflife,toliveactivelyuntildeathratherthanfeelingdebilitatedandwaitingtodie.Thepatientrequirementsofpalliativecarefromthetimeofdiagnosis todeathcanberepresentedbythefollowingdiagram.

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ContinuationofthePalliativeCareProcess

Duringthistimetherearemanyclinicaldecisionstobetaken,andthereforeappliedethicsispartofroutinedailypractice.Aclearexampleoccursinpalliativecare whenphilosophyandtheoryofethicalthinkingaretranslatedintoclinicaldecisionmakinganddirectlyaffectthepatient.Simplyput,itistheethicalframeworkbehind clinicaldecisionmakingthatsteers'lifeanddeath'decisions. Itisthereforeimportantthattheclinicianhasaclearframeworkinhisorherheadtoapplytoeachdecision.Inmostcontextstheterm'clinician'isconsideredtoapply onlytothedoctor,butthisisafallacy.Itisalltheprofessionalsinthemultidisciplinaryteami.e.doctors,nurses,physiotherapists,occupationaltherapists,social workersandchaplainswhomustunderstandethicsinordertomakeresponsibledecisionsasateam.Itistheapplicationofethicaltheorytodecisionmaking, particularlytheprinciplesofautonomy,beneficence,nonmaleficenceandjustice,thatwillbedealtwithinthischapter. 2 Trust Therelationshipbetweentheclinicianandthepatientcanonlyfunctionasasupportrelationshipifitisfoundedontrust.Thepatiententrustshisorhercare,and therebyhisorherlife,totheskilloftheprofessionals,principallythedoctorsandnurses,whoareresponsibleforprovidingcare.Thistrustiscrucialtounderstanding thedutiesoftheprofessionaltowardsthepatient. TheGeneralMedicalCouncil'sEducationCommittee

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publishedrecommendationsinOctober1987.Theseidentifiedtheattributesoftheindependentpractitionerandoutlinedthedutiesofthedoctor.Theseguidelineslist theattributesthatmustbeacquiredinadoctor'sprofessionaldevelopment.Thisdocumenthighlightsthepreciseattributesthatpatientsarelookingforinadoctor, withoutwhichthetrustthatthepatientputsinthedoctorwouldbebetrayed.Theseinclude: theabilitytosolveclinicalandotherproblemsinmedicalpractice possessionofadequateknowledgeandunderstandingofthebodyandmindinhealthanddisease,andahigherstandardofknowledgeandskillsinadoctor's speciality communicationskills,whichincludesensitiveandeffectivecommunication theabilitytoexercisesoundclinicaljudgement theabilitytorecognizeandanalyseethicalproblems. Theseandotherrequirementsareamplifiedinthedocument.However,itisclearlystatedthat'goodmedicalpracticedependsonthepartnershipbetweenthedoctor andthepatientbasedonmutualunderstandingandtrustthedoctormaygiveadvicebutthepatientmustdecidewhethertoacceptthis.' Thistrustalsoextendstoothermembersoftheteam.Apatienttruststhatdecisionsoractionsbythedoctorandnursearetakenwiththebestofintentionandwiththe patient'sbestinterestatheart.Itispreciselybecauseofthisinherentrelationshipoftrustthatanyfailurebyprofessionalstoactaccordingtoamoralandethicalcodeis sodamagingtopatientsandrightlyengendersanger.Anypossibilitiesfordoctorsornursestoabusetheirprofessionalpositionmustthereforebeguardedagainst rigorously. Therecanbetimeswhenapatientcanfailtoexpressclearlyaview,orrelativesmaytrytopressurizeprofessionalsintoactionthroughintentionalmalicetothepatient. Thepatientmustknowthatheorshewillalwaysberespectedasanindividual,andthatotherswillnotbeabletoinfluencecareadversely. TheAssociationforPalliativeMedicineisagroupofdoctorswhoseprofessionalroleistocareforterminallyillpatients,whethertheyaredyingfromcancer,Aidsor otherdiseases.The

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curriculumfortraininglaysoutsomeethicalprinciplesthatunderliegoodpalliativemedicine.Theyarebasedonthefourkeyprinciplesofautonomy,beneficence,non maleficenceandjustice,thatwillbediscussedinthischapter.However,beforegoingontothatdiscussion,itisworthstatingtheethicalprinciplesthatshouldbe acquiredbyeverymedicalstudentandshouldbeinherentineverydoctor'strainingwhateverthespeciality.

Thedoctorshoulddemonstraterespectforthepatient('autonomy')by: agreeingprioritiesandgoalswiththepatientandcarers, discussingtreatmentoptionswiththepatientandjointlyformulatingcareplans, notwithholdinginformationdesiredbythepatientattherequestofathirdparty, fulfillingthepatient'sneedsforinformationaboutanytreatmentsrespectingthepatient'swishtodeclinetreatment. Thedoctorshouldshowrespectforlifeandacceptanceofdeathbyunderstandingthat: treatmentshouldneverhavetheinductionofdeathasitsspecificaim, adoctorhasneitherrightnorduty,legalorethical,toprescribealingeringdeath. Thedoctorshould: understandtheissueswhichsurroundrequestsforeuthanasia, recognizethedangersofprofessionalsmakingjudgementsbasedon factorssuchaspremorbiddisabilityorage.

3 Autonomy Theterm'autonomy',meaningselfruleorselfgovernmentisderivedfromGreek.Itisimportanttorememberthatautonomyexistsonlyifitcanbeexercised,sothat anindividualhasautonomyonlywhenabletoimplementit.However,individualsinsocietycannotbehaveautonomouslysincetheyallinteractwitheachother.There aretimeswhentheautonomouswishesofoneindividualmayconflictwiththeautonomyofothersinsociety,whointeractwiththatindividual.Aclearexamplehas beenspec

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ifiedintheconscienceclauseofthe1968AbortionActwheretheautonomouswishofawomantohaveanabortioncouldnotforceagynaecologist,who conscientiouslyobjectstotheprincipleofabortion,toabortthefetus.Sadly,societyhasnotadequatelypolicedtheconscienceclause,soprolifegynaecologistsfindit difficulttoachievepromotion,sincetheirpeergroup,whoareundertakingabortions,willstandinthewayoftheirpromotion.Inthiscase,thewishtosharethe workloadofabortionrequestsappearstooverriderespectoftheindividual'sconscience.However,therearepeoplewhohaveachievedpromotionwhilstopenly invokingtheconscienceclause. Ifapatientisallowedtohaveautonomy,thenthosecaringforthepatientmustshowrespectforthepatient'sautonomyandallowthepatienttoexerciseautonomyin decisionmaking.Respectforthepatientisshownbyopenlydiscussingtreatmentoptions,usinglanguageandterminologythatareclearlyunderstoodbythepatient. Suchdiscussionsmustgoatthepatient'spacewheneverpossible.Anagreedtreatmentplan,formulatedbetweenphysician,patientandcarers,isapowerful demonstrationofrespect.Respectforpatients'autonomyisclearlydemonstratedwhenapatient'srequestforinformationisanswered,ratherthanthatinformation beingwithheldattherequestofathirdpartysuchasthepatient'sspouseorchildinotherwordsarequesttoadoctornottotellapatientthediagnosismaybea pointertobackgroundfamilydynamics.Itmayhelpthephysicianwhentalkingtothepatient,butifthispatientwishestoknowthediagnosisthenthephysician,in respectingthepatient'sautonomouswishesforinformation,mustdiscussthediagnosiswiththepatient.Soprofessionalsmustmeetthepatient'sneedforinformation whenthatinformationisrequested.Meetingapatientsinformationneedsentailsusinglanguageclearlyunderstoodbythepatientanddoesnotgivecarersalicenceto handoverinformationbluntlyorinsensitively,sincethatwouldbecontrarytotheprincipleofnonmaleficence,sothatany'badnews'mustbebrokentothepatient gentlyandsensitively,neverdenyingthepatientrealistichope.Thisconceptofgentlesensitiveimpartingofinformation,whilstmaintainingrealistichope,isalongthe principlesofbeneficenceandnonmaleficence. Patientsmaywishtodeclinetreatmentoffered.Whenthisisan

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informeddecision,professionalsmustrespectthepatient'sdecisionandcontinuetocareandsupportthepatientinthisaction.Forexample,apatientmaydecline bloodtransfusiononreligiousgroundsormaydeclinechemotherapy,feelingunwillingtoundergothesideeffectssuchashairloss,vomitingandsoremouthwhenthe treatmentwillonlyslightlyalterthecourseofthediseasebutwillnotbecurative.Theremaybetimeswhenpatientsmaywishtochangetheirmindovertreatment decisionspreviouslymadeandtheymustbesupportedandrespectedinrediscussionoftreatmentoptions. Dignityhasbeendefinedashavingasenseofpersonalworth.Thedignityofonepersonisnotabsolute,butdependsonthewaythatpeoplebehavetowardsthat person.Apersontreatedwithrespectanddignitywillhaveasenseofdignity,whereasapersontreateddisrespectfullyorabused,whohasbeentreatedasworthless, willhavelessornosenseofpersonaldignity.Theroleofprofessionalcarersmustbetoenhanceaperson'ssenseofdignityatalltimes.Potentiallydistressing occurrencessuchasepisodesofurinaryorfaecalincontinencemustbeminimizedbycaterssothattheydonotunderminethepatient'ssenseofpersonhood.Asimple exampleisthepatientwhohashadanepisodeofurinaryincontinencewhocouldbeasked,'Didyouwetyourself?'or'Didtheurinecomeawayonitsown?'The latterquestionimpliesthattheprincipalfaultiswiththeurine,andislessdamagingtothepatient'sdignitythantheformer. 4 InformedConsent Theprincipleofinformedconsentinvolvesrespectofpatientautonomy:forpatientstomakeinformeddecisionstheymusthaveadequateinformation.Partofthe decisionmakingprocessinvolvesthebalancebetweenthebenefitsofaproposedtreatmentandtherisksandburdensofthetreatment. Ineverydayparlance,theweighingupofthe'risksversusbenefits'and'burdensversusbenefits'ofatreatmenthavesometimesappearedtotakesecondplacetothe pressurefromthelegalprofessionswhichpushesfor'everythingtobedone'.Thoseinterestedinlitigationwillalwayswanttotaketheextrememodelasthepointof argumentinordertowintheircase.Unfortunatelythismeansthattheconceptofinformedconsent

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hasbeencorruptedfrombeingabalancedexplanationtothepatientofrealisticrisksagainstbenefits.Ithasbecomereplaced,particularlyintheUSA,byadefensive medicalpracticeofinformingthepatientofeverypossibleriskthatmightoccur,howeversmall,andtherebyimposingahugeburdenofanxietyonpatients.Some wouldarguethatthisextremeviewprovides'overinformation'andbecomesunethical,sinceitburdenspatientswithunnecessaryknowledgeaboutsideeffectswhich theyareextremelyunlikelytoexperience,andmayprejudicetheirtherapeuticresponsebygreatlyincreasinganxietylevels.Italsomayimpairatruerespectofpatient autonomy,sincethepatientislookingtotheclinicianforanexpertopiniontoprovidebalancedinformationratherthaninformationweightedinfavourofthephysician's defencelawyers.Inrespectingautonomy,thephysicianhasadutytoprovideinformationrelevanttothatindividualpatient,andthisdutyincludesattachingaweighting totheinformationintermsofmostlikelytoextremelyunlikelyrisks.However,anypaternalismwhichbelittlesthepatient'sknowledgeincomparisonwiththedoctor's 'superior'knowledgemustbeavoided.Apaternalisticattitudedoesnotrespectautonomy. Consentisgivenbyeverypatienteverytimetheycomplywithmedicalinstructions.Itisnotdependentonasignatureonapieceofpaper.Asignedconsentformis simplyawitnesstoaverbalconsent.Thepatientwhoagreestoswallowantibioticsisgivingconsenttotheprescribedantibiotictreatmentfromthephysician.Apatient whorefusesantibioticsisquitewithinhisorherrightstodoso,andshouldnotbedeniedcareorchastisedforthewishtodeclinetreatmentifthisisaninformed decisionthispatientissimplyexercisinghisorherautonomousrighttodeclinetreatment. Difficultiesoftenariseoverpatientswithadvanceddiseasewhodevelopachestinfection.Indecidingwhetherornotaninfectionshouldbetreated,theethical principlesoutlinedaboveshouldbeimplemented:i.e.doesthepatientwanttohavetheinfectiontreated,doesthepatientunderstandtheconsequencesofnon treatment,arethererisksattachedtotreatingwhicharegreaterthantheprobablebenefits?Isthispatientlikelytodieoftheunderlyingdisease,andsoiscurrent impositionofantibiotictreatmentfutile,inthatitwillbringnosustainablebenefit?Doestheeffortforthepatientintakingthedrugimposeanundue

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burdenwhichisgreaterthanpossiblebenefits?Ifthepatienthasdistressingsymptomsfromachestinfection,thenitisrighttotreat,sincethiswillrelievedistress,butit isnotethicaltogivethepatientpainfulinjectionsinsodoing,sinceonepainwillbeimposedinsteadofanotherpain,andthereforethepatientcannotbesaidtobe benefitingoverall.Intramuscularinjectionsareagoodexampleofaburdensometreatment,eventhoughthedrugbeinggivencarrieslowriskandisthoughttodo good.Theburdenoftheintramuscularinjectionwouldmakethattreatmentrouteunethical,buttheoralrouteortheuseofapainlessestablishedintravenousroute couldbejustified.Inthepatientwhodoesnothaveintravenoustherapy,againthequestionmustbeaskedwhethertheintravenouslineisburdensomeorisafutile treatment. 5 BeneficenceandNonMaleficence Beneficencemeans'doinggood'andnonmaleficencemeans'doingnoharm'.Theseareprobablythemostusefulconceptsinpracticaldaytodayclinical management,sincetheyclarifythinkingwhendecisionsaredifficultandpatientautonomyhasbeenfullyrespected.Insimpleterms,thebenefitsofatreatmentshould alwaysoutweightherisksoftreatment(todogood)andtheburdensshouldbelessthanthepredictedbenefit(todonoharm). Itmaybehelpfultothinkaboutthisbalancebycitingsomeclinicalexamples.Considertwopatients,bothofwhomhadcanceroftheoesophagus(gullet),making thembothunabletoswallownutrition.Inboththesepatientslackofnutritionandfluidinputwasamajorclinicalproblem.Bothpatientshadafinenasogastrictube (tubegoingthroughthenosedownintothestomachthroughwhichliquidfeedscanbegiven).Thefirstpatienthadseveralsecondarydepositsofcancerinthebones andliverandhadseverenauseaandvomiting.Thenasogastrictubehadgivenhimasorethroat.Hiswishwastorestinpeace.Painreliefanddrugstocontrolthe vomitingcouldbegivenbyanalternativeroute(viaasyringedriver,whichisapainlessroute).Thepatientwasawarethatremovalofthenasogastrictubewould resultinremovalofaroutefornutrition,butthiswashiswish,asthenasogastrictubewasaburdentohim.Thenaso

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gastrictubewasremoved,hewasgivenadequatepainreliefandantisicknessmedication,anddiedpeacefullyfortyeighthourslaterhisdyingatthattimewas inevitablewhatevertheintervention.Thenasogastrictubewasofnobenefittohimsincehisotherproblemswithhiscancerwerekillinghim,anditwasaburdensome andfutiletreatment.Thereforetherewasnodifficultyinceasingthenasogastricfeeding.Theinevitabilityoftheman'sdeathwasnotalteredbythepresenceofthe nasogastrictube,buthisqualityoflifewasseverelyunderminedbyit,andhisautonomousrequestwastoceasetreatmentthroughit. Thesecondpatientalsohadasorethroatfromthenasogastrictubeandhatedhavingtobefedthroughit.Healsohadsomepain,whichwascontrolledwith morphine,againviaasyringedriver.Howeverhisgeneralconditionwasbetter,andhedecidedtoagreetoasimpleoperation(agastrostomy)whenafeedingtube wasinserteddirectlythroughtheabdominalwallintohisstomach.Thismeanthenolongerhadatubehangingoutofhisnose,whichwasunsightly,andallfeedingand drugscouldbegivendirectlyintothestomach.Hequicklylearnttoputhisliquidfoodanddrugsthroughthistubehimselfandsoonwasabletogoouttothepub, feelinghimselftobesociallyacceptablenowhedidnothaveatubehangingoutofhisnose.Despitebeingveryill,heenjoyedahalfpintofbeerbyswillingsomebeer aroundhismouthandpouringthehalfpintthroughafunnelintohisstomachtubetherebyobtainingthetasteofthebeerandlettingthealcoholreachhisbrain.Forhim thebenefitsofthetubeweremuchgreaterthantheburdensofthisinconvenientwayofobtainingnutrition,andtherisksoftheoperationweresmallcomparedtothe anticipatedbenefits.Thereforeinthisman,withthesamediagnosisandmanyofthesameclinicalproblems,theethicalmanagementwascompletelydifferent. 6 Justice Thefourthimportantprincipleisthatofjustice.Justicehastwodomains:firstlythereisjusticetotheindividual,andsecondlythereisjusticetosocietyasawhole. Healthcareprofessionals,andparticularlyphysicians,haveadualresponsibilityinthejusticeofcaregiventotheindividualandthejustallocationofresources.

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Thejustcareofanindividualdemandsthatnojudgementsaremadeongeneralizationsofanypreexistingcondition.Nopatientshouldbejudgedastoooldorhaving apreviousdisabilitywhichautomaticallyexcludesthemfromtherighttotreatmenttheindividual'spersonhoodmustberespected,anddecisionsovertreatmentmust bemade,weighinguptheprinciplesoutlinedabove.Disabledpersons,particularlythosewithdifficultieswithspeechorhearing,whichcanimpaircommunication,will needadditionaltimeandeffortspentinensuringthattheirautonomyisbeingrespectedthisisjusticetotheindividualanditistheirright. Unfortunatelyresourcesinhealthcarearefiniteandlimited,sothatjusticedemandsthatresourcesareallocatedandusedfairlyfortheoverallbenefitofthoserequiring them.Aclearexampleofthisisusedininstanceswheretherehasbeenamajoraccident.Withinthefirsthourortwoofcasualtiesarriving,decisionshavetobemade aboutwhichpatientsreceiveresuscitativemeasuressuchasbloodtransfusionsandemergencysurgery,andwhichcanwaituntilmoreblooddonorshavebeen contactedorcanwaitforsurgeryalittlelater.Therearealsothosecasualtieswhowillnotbetreatedbecausetheirinjuriesaresosevereandtheirchancesofsurvival aresosmallthatthetimespentinattemptstoresuscitatethemwillendangerthelivesofotherswhohaveabetterchanceofsurvival.Thisistheprincipaloftriageused onthebattlefieldsandinthemanagementofamajoraccident.However,patientswiththesamedegreeofinjurymayundergoactiveattemptsatresuscitationand surgeryintheattempttosavetheirlife,shouldtheybebroughtinasanisolatedaccidentvictimfollowingamotorcycleorcaraccident.Theyprobablywilldieinspite ofmedicalinterventionbut,whentheyaretheonlypersonbroughtinitwouldbeunethicaltodenythemthechanceoflifesavingtreatment.Thesadrealityinthemajor accidentisthattherearenotenoughlifesavingtreatmentstogoround,andthereforedecisionshavetobemaderapidlysothatlifesavingtreatmentsaregivento thosewithsomechanceofbenefitingfromthem. Thisisanextremeexample,butinroutineclinicalpracticedoctorshavedecisionsoverresourceallocationtomakeeveryday.Expensivenewantibioticscannotbe usedforeverypatientasthefundsfordrugswouldrapidlybeexhausted.Sopatients

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aregivenoldfashioned,cheaperantibioticswhichhaveahighchanceofsuccess,eventhoughthereisasmallchancethatthebacteriamayhavedevelopedresistance tothem.Thustheexpensive,rapidlyeffective,drugsarekeptinreserveandtheprescribingbillisreasonable,sothatmorepatientscanbetreatedwithinthesamedrug bill,andthedevelopmentofdrugresistancetothenewerantibioticsisminimized. 7 TheSanctityofLife Evenwithinsecularsociety,fewwouldstatethatlifeinitselfisworthless.Indeed,thoseexpressingaglobalviewthatlifehasnointrinsicworthusuallyaresuffering fromapathologicaldepressionandrespondwelltopsychiatrictreatment.Theterroristdoesnotrespectthesanctityoflife. Deathisthenaturalandinevitableendtolife,andmedicineisunabletoprovideimmortality.Thephysicianhasaconstantdilemmabetweenrespectingthesanctityof lifeandstrivingtosavelife,whilstneedingtorespectdeathwhenitisinevitable.Respectforthesanctityoflifedemandsthatthephysicianneverkillsapatient. However,acceptingdeathalsodemandsthatthephysicianadequatelyevaluatesclinicaldecisionstoensurethatfutile,burdensometreatmentsarenotimposed unnecessarilyonapatientwhois'metabolically'dying.Thereforecontinuingtoventilatethepatientwhoisbraindeadisafutiletreatmentwhilstnotdirectly burdensometothepatient,whoisalreadyunawareofthesituation,itisburdensometothefamilyintheirgrieving,andtosociety.Itimpairsthejustallocationof resources,sincetheventilatoristhennotavailableforotherpatientswhoselivescouldbesavedbyitsuse.Thedecisiontoceaseventilationdoesnotkillthepatient, butdoesaccepttheinevitabilityofdeath. Thisbalancebetweenrespectingthesanctityoflifeandacceptingdeathhasbeenmucharguedoverwhenprinciplesofeuthanasiaarediscussed.Inmanycases,the argumentsarefalselydistortedbythosewishingtoholdonestandpointoranother.Issuessurroundingrequestsforeuthanasiawillbedealtwithinthefollowingsection. Lifeisafragilecommodity,frequentlyundervaluedbythoseabletoenjoyagoodqualityoflifewholiveinthebeliefthat'itwillneverhappentome'andundertake wildlyriskyactivities,

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suchasdangeroussportsorirresponsibledriving,inamistakendenialoftheirownmortality.Deathhasafinalitytoit,oftenwithunforeseenandunpredictable consequencesforthoseremainingaliveor'leftbehind'.Thisawfulfinalityandirreversibilityofdeathissometimesunrecognizedinthephilosophicaldebateofconcepts. Whilstabletoenjoylifeandthinking,itishardtoimaginetheworldasitcontinuesandinwhich,asindividuals,weceasetoexist.However,deathisnorespecterof age,creedorsocialclass,andfrequentlycutspeopleoffintheirprime. 8 AdvanceDirectives TheintroductionoflegallybindingadvancedirectivesintheUnitedStateshasbeendriven,inpart,bypatientswantingtoexpresstheirwishes,buttoalargeextentby doctors'fearoflitigation.Withoutasignedadvancedirectivethedoctorisobligedtoundertakecardiopulmonaryresuscitationonpatientsevenwhendeathis anticipated.ThissituationfortunatelydoesnotariseintheUK,althoughtherehasbeenmuchdebateabouttheinstruction'Nottoberesuscitated'inpatients'notesin hospitals.Wherethepatient'sdeathispredictableandresuscitationwouldbefutile,thereisnoobligationonthemedicalteamtoundertakecardiopulmonary resuscitationattempts.Indeed,itwouldbeabhorrenttohavethespectacleofpeoplesittingroundadyingpatientandthen,asthepatientbreathesforthelasttime,to haveacrashteamrushingin. However,theroleoftheadvancedirectiveisusefulinallowingopendiscussionbetweendoctorandpatientabouttheirwishesandtheconsiderationofvarious treatmentoptions.Inthemajorityofcases,theadvancedirectivesimplyactsasacommunicationaidandpromotesethicaldebateoverapatient'swishes,thereby enablingtheprincipleofinformedconsenttobeputintoeffect. Therearesomeproblemswiththeintentionsignalledinanadvancedirectivethesewouldbecomeextremelyobviousshouldtheadvancedirectivebecomelegally binding.Therearedifficultiesindraftinganadvancedirectivewhosewordingisequallybalancedbetweeninterventionandnonintervention.Currentlythereisnoform thathasfounduniversalfavour.Thereisdifficultyinknowingwhetherthepatientwascompetent,properly

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informedandfreefromduressatthetimethedirectivewaswrittenpatientsoftendonotdisclosepressureswhichtheymayfeel,andsomedegreeofdisordered thinkingcanbeextremelydifficulttodetectclinically.Evenwhenapatienthasanadvancedirectivewritten,itmaybedifficulttoestablishthisfact,sincepatientsdonot keepthemontheirpersonatalltimes,andso,fromapracticalpoint,itisimportantthattheintentioncontainedintheadvancedirectiveisclearlyrecordedina patient'scasenotes,ratherthaninsistingontheadvancedirectiveitselfbeingread.Evenwhentheadvancedirectiveitselfisavailabletobereadthrough,theremaybe difficultyininterpretingtheprecisemeaningofwords.Forexample,thereisnocleardefinitionofterminalillness,andwordssuchas'recovery'canbeinterpreted differentlyastheymayrepresentdegreesofimprovementwhichdifferwithinterpretationfromonepersontoanother.Thismayleadtodisputeoverinterpretationof wording,ifthepatientbecomesincompetentandunabletoexpresstheirwishes,andthereforetherewouldneedtobeamechanismforinterpretingadvancedirectives indisputeiftheyaretobelegallybinding.Whenitisviewedasaguidetocare,theadvancedirectivecanbehelpfulasanadditionalpieceofinformationtoclinical decisionmaking,ratherthanallowingthewordingtohaveoverridingimplications.Itmaybethattheadvancedirectivewaswrittentoolongago,orwrittenwithclinical expectationsthathavenotoccurred.Anadvancedirectivecannotprohibitnormalcareormeasuresforpainandsymptomcontrolitwouldnotbeethicallyrightfora statementinanadvancedirectivethatspecifiedthatnolifeprolongingtreatmentsofanysortweretobegiven,andthereforetoleaveapatienttodieadistressing deathincardiacfailurewhentheadministrationofadiureticcouldbebothlifeprolongingintermsofdaysandabletoprovidegreatsymptomreliefenablingthepatient todiepeacefullylater. Therearealsodifficultiesoverdefiningcompetenceastherearemanylevelsofmentalcompetency,andlevelsofcognitivefunctioningmayvaryfromhourtohouror daytodayinanypatientwhoisseverelyill.Withinsocietythereisanincreasingtendencytosaythatdependencyonothersforcareimpliesbeingaburden.However, therearemanyexamplesofpeoplewhohavesufferedextremedisabilitybutthencontributedgreatlytosocietyoncetheyhaveadaptedtotheirdisability.Thisphase ofadapta

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tioncancreatemanydifficulties,sincepatientsmayfeeldespondent.Theymaydespairandwishtodie,andyetmaylaterbecomeveryactivewithalifewhichthey viewashavingqualityandrewards.Itiswellrecognizedthatapatient'sperceptionofthequalityoflifevariesfromdaytoday,andtheprioritieswithinlifealsovary.In thissituation,anadvancedirective,evenifrecentlywrittenmaydenythepatientaccesstofullrehabilitativeattempts.Thereisclearevidencefromheartattackand strokepatientsthatearlyactiverehabilitationproducesamuchgreaterimprovementthanoccurswithpatientswhodonotreceiveintensiverehabilitationtherapiessuch asphysiotherapy.Treatmentdecisions,therefore,arenotsimplyonesofwhethertotreatornottotreat,butmustalsoincludelikelyoutcomesinthelongtermof deferredtreatmentshouldpatientschangetheirmindlater.However,therearecircumstanceswhereapatientwithadensecardiovascularaccidentmayhavesuch neurologicaldeficitthatitisobviousthatthechancesofrecoveryareextremelypoor.Undercurrentpracticesuchapatientwouldnotbeenteredintoanintensive rehabilitationprogrammeasthiswouldbefutile.However,thereisadangerthattheadvancedirectivecouldbeseenastheonlywayinwhichtreatmentcouldbe withheldfromapatient,andthereforetheeffect(oppositetothatintendedbythosewhoareproposingthatadvancedirectivesbecomelegallybinding)couldbethat patientswhohavenotsignedanadvancedirectivewouldhaveagreaterratherthanareducedtendencytobeovertreated. Insummary,theabilityforpatientstoexpressinwritingtheirwishesforcareisahelpfulaidtocommunicationbetweendoctorandpatient.Itcanhelppatientsstarta dialogueofexplanationtoensurethattheyhaveampleopportunitytoexpresstheirwishesandthatconsentisinformedwhentreatmentdecisionsaretaken.However, theconceptofsuchanadvancedirectivebecominglegallybindinghasmanyproblemsandmaynotachievethedesiredeffectofabalancedethicalviewinclinical decisionmaking. 9 Euthanasia Theterm'euthanasia'isusedineverydayparlancetoimplyvoluntaryeuthanasiai.e.thedirectintentionalkillingofaperson

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athisorherrequestaspartofthemedicalcarebeingoffered.ThewordcomesfromGreekandimplies'agooddeath'.Thereforeitisatravestyofthetruthand sanitizationofhistorytospeakof'involuntaryeuthanasia'asthemassmurderandsufferinginflictedinconcentrationcamps.Thatwasnoteuthanasiabutmassmurder. Itcanbearguedthattheterm'euthanasia'cannotbeusedinrelationtotheinvoluntarykillingofapatient,sinceadeathwhichhasnotbeenwishedforbythatpatient canneverbeconsideredtobegoodforthatindividual.Theirreversibilityandfinalityofdeatharesometimesgivenscantregardbythosewhoargueabouteuthanasia forothersbypropoundingtheirownviews.Itiswellrecognizedbyallthosewhoworkwithpatientswhoareterminallyillthattheviewsofthemedicallywelloften changedramaticallywhentheythemselvesbecomeill.Argumentsareputforwardbythemedicallywellonbehalfofthemedicallyill,butsweepinggeneralizationscan impairtheautonomyoftheillandsubtlyprejudicethinkingagainsttheillanddisabled,therebyalsoimpairingtheethicalprincipleofjustice. WhyAskforEuthanasiaRatherthanCommitSuicide? Suicideisthevoluntarytakingofone'sownlife,i.e.selfkilling.Intheactofsuicidetheindividualisactingautonomouslyineffectingtheirwishtodiethisdoesnot impingedirectlyontheautonomyofothers,asthisisaselfactanddoesnotrequireanotherpersontobethekiller.Theargumentsaboutassistedsuicideareoften carriedtoextremesanyonewhohassuppliedtoapersonthemeanstocommitsuicidecouldbearguedtobeanaccessorytotheact.Thedoctorwhoprescribes powerfuldrugswiththeintentionofrelievingsymptoms,notwiththeintentionofkillingthepatient,cannotreasonablybedeemedtobeanassistantifthatpatient decidestotakeanoverdoseofthedrugs.Manypeopleareawareofthedangersofparacetamoloverdose,andthesedangersareclearlyprintedonsuppliesof paracetamolwhichcanbepurchasedoverthecounter.However,themanufacturersofthedrugarenotassistingsuicidebyproducingtheanalgesic,eventhoughthere aredeathseachyeardirectlyattributabletoparacetamoloverdose. Therefore,theonlypeoplewhomightbereasonablyexpectedtoaskforeuthanasiaratherthancommitsuicidewhentheyfeel

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suicidalarethosewhoarephysicallyunabletotaketheirownlife,suchasthosewithastabledisabilitylikeaquadriplegia,orthosewhoaretooillandweaktotakean overdoseofadrug.Patientswhoaretooillandweaktotakeanoverdoseareusuallywithinthelasthoursoflifeanyway,andthereforedeathwillcomeasrapidlyby naturalcausesasbythepatientcontrivingtodie.Therehaveoccasionallybeensuicidesamongstveryfrailterminallyillpatientswhohavetakenadrugoverdose,butit isremarkablethatmanythousandsofpatientseverydayareterminallyillandhaveeasyaccesstoextremelypowerfuldrugsbutchoosenottotaketheminoverdose. Thenumberofpatientswhophysicallyaretotallydependent,suchasthequadriplegic,areextremelysmall.Sadly,theirdisabilityhassometimesresultedfromthe impositionoffutileresuscitativeprocedures,wheretreatmentshavebeengiventothepatientwithoutadequatediscussioninrespectofpatientautonomyandwithout trueinformedconsent. Whenapatientasksforeuthanasia,itmaybethatpatientisaskingforaresponseotherthanalethalinjection.Itmaybethatthepatient'sphysicianhasremovedany hopeofsymptomcontrolanddignity,butthepatientdesperatelyseeksconfirmationofpersonalworth,orthehopeofimprovedqualityoflife.Thewaythephysician respondshasimplicationsforthepatient. HowCanWeRespondtoaPatientWhoRequestsEuthanasia? Theresponseofthephysiciantosucharequestwillhaveamajorinfluenceonthepatient'sperceptionofthefuture.Ifaphysicianfeelshopelessorunmotivatedtocare forthepatient,thepatient'sselfperceptionwillbeoneofworthlessness.Thephysicianwhoisfacedwithanintractableclinicalproblemandfeelshehasfailedinhis managementofapatient,mayfinditdifficulttoovercomepersonalprideinseekinghelpfromothers.However,thepatientmaynotbeawareofthesepersonalissues withinthephysician,andmayfeelthatthestatement'thereisnothingmorethatcanbedone'isbasedonanabsolutemedicaltruthratherthanmeaning'Idon'tthink thereisanymoreIcandoforyou,butsomebodyelsemaybeabletodosomething'.Unwillingnessofthephysiciantoreferpatientstoother

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colleaguesdoesnotallowthepatienttoenjoythejusticeoftherighttothebestpossibletreatmentinresourcesavailable.Thusthephysician'sprideobstructstheright ofapatienttoadequateinformation,andthereforethepatient'sautonomyisnotrespected.Itisnotdifficulttoenvisageinstanceswhereitiseasierforaphysicianto disposeofadifficultclinicalproblemthrougheuthanasiaratherthanspendtimeandefforttoworkthrough,learnfromothersandriskexposinghisorherownfailings. Analternativeresponsetothepatientwhorequestseuthanasiaistorecognizethisrequestasaseriouscryforhelpandastatementofdespair.Carefulhistorytaking willexposetheproblemswhichmakethepatient'scurrentsituationintolerable,andcarefulanalysisoftheseproblemswillallowsolutionstotheindividualpartstobe obtained.Thusthepatient'srequestforeuthanasiaisacryforhelpandisaskingthephysiciantotaketheirsufferingmoreseriouslyandtoredoubleeffortstorelieve distress.Noonepersoncanhavealltheanswers,butadvicesoughtfromcolleaguesandamultidisciplinaryteamapproachcanbeextremelyrewardingforthe physicianhumbleenoughtoadmittohisorherowndeficiencies.Alleffortsatsymptomcontrolmustaimtomaximizethepatient'sdignity,minimizedependencyand reaffirmthepatient'spersonalworthandvalueasanindividual.ThisapproachhasbeenadoptedinhospicecarethroughoutGreatBritain,andtheexperienceofthose workinginhospicesisthatrequestsforeuthanasiadonotpersistreassessmentofpatients'perceptionoftheirqualityoflifeaftergoodpalliativecaredemonstrates improvement. Itisverycommonforpeoplewhosuddenlyfacetragedytofeelthatlifeisnotworthliving.Thusthepatientwhosuddenlybecameparaplegic,aneventwhichshehad fearedmorethananythingelsethroughoutherlife,feltthatshehadnodignityorpersonalworthandonlywishedtodie.However,withinashorttimeofgood symptomcontrol,effectivephysiotherapyandoccupationaltherapytohelpheradapttowheelchairliving,thissamepatientspontaneouslystatedthatshenever believedlifecouldhavesomuchqualityagainandthatshewasgettingenjoymentoutofthingsthatshehadneverevenpreviouslynoticed,suchastheintensebeauty oftheflowersinspring.Readjustmentofherrolewasimportanttohersenseofpersonalworth.

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IsSymptomControlPassiveEuthanasia? Euthanasia,wheretheintentionistokillthepatient,isfundamentallydifferentfromsymptomcontrol.Ofcourse,anymedicalinterventioninvolvesrisk,but,as explainedabove,thisriskshouldalwaysbelessthanthepredictedbenefit.Withmanydrugsusedinsymptomcontrol,thereisariskofsedationasasideeffect,which mayconsequentlydecreasecoughingandincreasetheriskofapatientdevelopingachestinfectionasafinalevent.Theintentiontoprovidegoodpaincontrolmay unfortunatelyresultinachestinfection,butdoesnotcarrytheintentiontokillandisnotdonewiththeexpressintentionofgivingachestinfection.This'doubleeffect' ofdrugsisnoteuthanasia. Toobtainsymptomcontroltheminimumeffectivedoseistherightone,sothatbenefitsaremaximizedandsideeffectsminimized.Tokillapatient,theintentionaluse ofamaximumdoseisrequired.Thereisnoevidencethatgoodsymptomcontrolshortenslife,anditmayoftenprolonggoodqualitylifeaspatientsdonotbecome exhaustedbyintractablesymptomssuchaspainorvomiting. Thustheintentionwithwhichdrugsaregivenisofparamountimportance.Inpalliativecaretheintentionistoprovidesymptomcontrolandthereforedosesaretitrated uptofindthemosteffectivedosewiththeminimumsideeffectsforthepatient.Thisiscompletelydifferenttotheintentionaluseofalethalinjection. DangersinAcceptingEuthanasia InHolland,anincreasinglysecularsociety,theconceptofeuthanasiahasbecomerespectablethroughthemediaandisnowtakenupbythepopulationatlarge. However,therehasbeenincreasingevidencethattheuseoflethalinjectionsisnotconfinedtothosepatientsrepeatedlyrequestingeuthanasia.Ithasbeenusedwhen relativeshaverequestedthedeath,andevenwherethehealthcareprofessionshaveactedindependentlywithoutconsultationofpatientorrelatives.Herethehealth careeconomicsofpatientturnoverratesandbedthroughputperilouslyimpairapatient'srighttocareandallowaselfishmaterialisticapproachinsocietytoavoida dutytocare.ThereisalsoevidencefromHollandthateuthanasiahasnowbeenused

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asawaytokillpatientswhosediseaseisnotinevitablyfatal,andindeedwhoseprognosiswithgoodmedicaltreatmentcouldbedeemedtobegood.Casesinthe literaturerecentlyhaveincludedayounggirlwithanorexianervosa,andawomanwithseveredepressionfollowingbereavementwhorefusedconventional antidepressanttherapy.TheDutchguidelinesweredesignedtobeusedfortheterminallyillonlytheyhaverapidlybecomemorewidelyinterpretedtobegintoallow euthanasiaondemand.TheevidencefromHollandsuggeststhatthedemanddoesnotalwayshavetocomefromthepatienti.e.requestsforeuthanasiaaregenerated bythefamily,orinstigatedbythephysicianwithouttheexpressedwishofthepatient,sothatpatientautonomyisnotrespected.Thedangersofthispatternmustbe heededbyallthosewhoenterintotheeuthanasiadebate,sincethe'slipperyslope'argumentcannotbeconsignedtoconsequentialistpessimismbutisareality,of whichthereisevidencefromtheNetherlands. Euthanasiahasbecomeadifficultdebateinoursociety.Menckenstatedthat'foreverydifficultquestion,thereisaneasyanswershortsimpleandwrong'.Thelawis andalwayswillbeabluntinstrument,andnogeneralregulationscanbewrittenforthespecificsofanindividual.Theethicalprinciplesoutlinedabove,andthe evidencefromthoseinhospicesprovidingpalliativecareforpatients,clearlydemonstratethatthereisnoneedtochangethelawtopermiteuthanasia. Thelawhasaprotectivefunctioninsocietyandistheretoprotectthemajorityofthepopulation.Thelawprotectstheindividualbothfromtheactionsofothersand fromhimorherself.Ineverysocietytherearepeoplewhowouldwillinglybecomeexecutionersortorturers,andtherearemanywhosecretlyenjoyavoyeuristic rolewhendealingwithdeathandthedying.Thelaw,byprohibitingkilling,preventssuchpeoplefrombeingabletosatisfytheirabnormaltraitandcontinuestoprotect theindividualfrommalpracticebyothers. Iswithdrawingpatienttreatmenttantamounttoeuthanasia?Patientautonomycanbeeasilyrespectedinthecompetentpatient.However,theincompetentpatient, renderedunabletocommunicate,confusedorwithanimpairedlevelofconsciousness,isunabletoexerciseautonomy.Itisforthisgroupofpatientsthatquestionsof withdrawingtreatmentusuallyarise.

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Therearesomeimportantquestionswhichmustbeasked.Isthetreatmentofbenefittothepatientasawholeperson?Treatmentwhichenhancesqualityoflifeand personhoodofanindividualcanbedeemedtohavebenefit,whereastreatmentwhichdoesnotenhancethewholesenseofapersonbutsimplymaintainsa'heart/lung preparation'cannotbedeemedbeneficial.Similarly,treatmentwhichisburdensome,eithertotheindividualbecauseitisuncomfortableorpainful,orcausesdistressin someotherwayorisburdensometosocietyandhasnobenefittothepatient'soverallwellbeingasaperson,canbedeemedfutile.Suchafutiletreatmentisan 'unjustuse'ofresourcesandismeaninglessintermsof'doinggood'and'doingnoharm',sincetheharmfuleffectistheburdensomenessofthetreatment,andthe treatmentdoesnogoodifitisfutile.Thusthewithdrawalofsuchatreatmentisthecessationofafutiletreatmentitmaybethatasaresultofwithdrawalofafutile treatmentthepatient'sinevitabledeaththenoccurs.However,hereagaintheintentionwithwhichthedecisionwastakenisofparamountimportance.Ifatreatmentis deliberatelywithdrawnwiththeexpressintentionofkillingapatient,e.g.ifaventilatorisswitchedoffinsomebodywhoserecoveryispossible,thentheactionof withdrawingthetreatmentiswilful,premeditatedkillinganddefinedasmurder.Ifaventilatorisswitchedoffinapatientbecausetheventilationofthepatientisfutile andthereisnochanceofrecoveryfromthatsituation,thenthecessationoftreatmentisjustified,sincecontinuingventilationofthepatientwouldbringnobenefittothe patientasapersonanddamagesotherpatientsbyunfairlyallocatingresources.Whensuchadecisiontoceasefutiletreatmentistaken,itisimportantthatthepatientis notallowedtoexperienceadversesideeffectsintheprocess.Thusmeasuresaimedatcontrolofsymptomsandmaintenanceofpatientcomfortmustbecontinued. Argumentsovernutritionhavebeenusedinthisrespect.Whennutritioniswithheldfromsomebody,thatpersonwillstarvetodeath,andthereforenutritionispartofa basicaspectofhumancare,especiallytowardsachildoranyotherdependent.Inthenormalsense,nutritionisnotdistinctlyamedicalact.Whenconventional nutritionisimpossible,themaintenanceofapatient'snutritionalstatusmaybecomeamedicalact.Atthispointthebenefitmustbeweighedupagainsttheriskand

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burdenparenteralfeedingisrequiredforpatientswhosequalityoflifeandpersonalwortharemaintainedbythetreatment,butisnotindicatedinpatientsinwhom suchattemptsarefutilebecauseoftherateoftheirdiseaseprogression.Therecanbeindicationstoprovidenutritionoverandaboveanyothermedicalintervention, eveninpatientsinextremis,sincethereisevidencethatadequatenutritionpreventsproblemssuchaspressuresores,whicharedistressing,fromoccurring. Decisionstowithholdorwithdrawmedicaltreatmentmustbetakenbasedonthefourprinciplesoutlinedatthebeginningofthischapter.Theyarenotvariationsof euthanasia.Theterm'passiveeuthanasia'isamisnomeritistheintentionwithwhichaclinicaldecisionistakenthatisofprimeimportance. 10 TheHouseofLordsSelectCommitteeReport In1983aparliamentaryinquirywassetuptoexamineethicalissuessurroundingdeath.ThiswasestablishedasaSelectCommitteefromtheHouseofLords,under thechairmanshipofLordWaltonofDetchant.ThiscommitteewastheHouseofLordsSelectCommitteeonMedicalEthics,drawnfrompeersofwidelydiffering persuasions,andcarefullyestablishedasabalancedcommittee.Thecommitteewasappointedtoconsidertheethical,legalandclinicalimplicationsofaperson'sright towithholdconsenttolifeprolongingtreatment,andthepositionofpersonswhoarenolongerabletogiveorwithholdconsentalsotoconsiderwhetherinwhat circumstancesactionsthathaveastheirintentionthelikelyconsequenceoftheshorteningofanotherperson'slifemaybejustifiedonthegroundsthattheyaccordwith thatperson'swishesorwiththatperson'sbestinterest,andinalltheforegoingconsiderationstopayregardtothelikelyeffectsofchangesinlawormedicalpractice onsocietyasawhole.Thecommitteetookevidencewidelyfrommanypeopleincludingthoseinfavourofeuthanasia,professionalgroupsinvolvedinthecareof patientsandpatientrepresentatives.Theyalsotookindividualsubmissionsofevidence,andnoevidencewasrefused.ThecommitteevisitedHollandandtook evidencethereinthelightofDutchattitudestoeuthanasia. Thereportofthiscommitteewaspublishedon17February1994.Itisclearlywrittenandexploresalltheseissuesindepth.

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Itisavaluabledocumentandshouldbestudiedbyallwhoprofessaninterestinmedicalethics.ItisworthnotingthattheconclusionsoftheSelectCommitteeon MedicalEthicsinclude: Arecommendationthatthereshouldbenochangeinthelawtopermiteuthanasia. Strongendorsementoftherightofthecompetentpatienttorefuseconsenttoanymedicaltreatment. Thatdoubleeffectisnotareasonforwithholdingtreatmentthatwouldgiverelief,aslongasthedoctoractsinaccordancewithresponsiblemedicalpracticewiththe objectiveofrelievingpainorstressandwithouttheintentiontokill. Treatmentdecisionsshouldbemadebyallinvolvedinthecareofapatientonthebasisthattreatmentmaybejudgedinappropriateifitwouldaddnothingtothe patient'swellbeingasaperson. Itshouldbeunnecessarytoconsiderthewithdrawalofnutritionandhydration,exceptifitsadministrationisinitselfburdensometothepatient. Treatmentlimitingdecisionsshouldnotbedeterminedbyresourceavailability. Longtermcareofdependentpeopleshouldhavespecialregardtomaintenanceofdignity. Achangeinthelawonassistedsuicideisnotrecommended. Fordetailsontheseandotherconclusionsthereaderisreferredtothereport. 11 Conclusion Clinicalpalliativecareembodiesthepracticeofmedicalethics.Whenthekeyprinciplesofautonomy,includinginformedconsent,beneficence,nonmaleficenceand justiceareinvokedindecisionmaking,theresultisgoodcarewhichiscosteffective,andimprovedqualityoflifeforthepatients. BackgroundDocumentsandPapers AssociationforPalliativeMedicineofGreatBritainandIreland,

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Southampton.PalliativemedicinecurriculumGuidelinesforteachingpalliativemedicine(atallgrades). BluebondLangnerM.ThePrivateWorldsofDyingChildren(Princeton,PrincetonUniversityPress,1987). BritishMedicalAssociation.PhilosophyandPracticeofMedicalEthics(London,BMA,1988). Browne,K.andP.Freeling.TheDoctorPatientRelationship(EdinburghandLondon,Livingstone,1967). ReportoftheSelectCommitteeonMedicalEthics,HouseofLords(HLPaper21I)(London,HMSO,1994). Jeffrey,D.ThereisNothingMoreICanDo(London,TheLisaSainsburyFoundation,1993). Mason,J.K.andR.A.McCallSmith.LawandMedicalEthics(London,DublinandEdinburgh,Butterworth,1991). Scott,W.E.,M.D.VickersandH.Draper.EthicalIssuesinAnaesthesia(London,ButterworthandHeinemann,1994). Skegg,P.D.G.Law,EthicsandMedicine(OxfordUniversityPress,1990). Wilkinson,John.'Ethicalissuesinpalliativecare',inOxfordTextbookofPalliativeMedicine,ed.E.Doyle,G.W.C.HanksandN.MacDonald(Oxford UniversityPress,1993).

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6 PastoralCareoftheDyingandBereaved
HeatherSnidle 1 Introduction Separationandlossarepartofourlives,andweourselvesorthoseweworkwithmaywellbesufferingfromthem.Theycantakemanyformsburglary,moving house,changingjobs,stillbirth,miscarriage,thebirthofahandicappedchild,infertility,rape,lossofspeech,disfigurement,divorce,beingfacedwithresidentialcare, imprisonment,lossofapet,redundancy,orasaresultofaccident,ordeath. Griefisanintegralpartofnormallife,andthestrongfeelingsitcanevokeareanaturalresponsetoloss.Thebabymustleavethewomb,thechilditsparentson enteringschool,theadolescentitsfamilytoleadanindependentlife.Frombabyhoodwelearnthatcryingappearstodemandaresponseandareestablishmentof humanconnections,andwithmaturitycomesinnerresourcesandknowledge,growingindependenceandselfawareness.Welearnthatlossissurvivable. Bowlbyandothershaveshownthatthequalityofattachmentinchildhoodwillinfluencelaterbehaviourandlossmanagement.1 Ifthisisnotlearntinchildhooditcan leadtodenialoffeelingandwithdrawalfromrelationshipsinadultlife,thus'protecting'ourselvesfrompainlossnotacknowledgedcanleadtocoldnessanddenialof feelings.Eachperson'sresponsetolossisuniquetheproductofpersonalexperience. Weallliveinanuncertain,rapidlychangingworldinwhichwecannotpredictthefuturetheonlyinescapablecertaintyisthatweallfacedeath.Thisonecertaintyis oftentoosombretobefacedopenlyyeteverytimealovedone,colleagueorpatientdies,weareremindedvividlyofourowndeath.Thiscanforceus

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tofacefundamentalquestions. Caringforthedyingandbereavedisachallengeforprofessionals.Itmeanstryingtounderstand,listeningattentively,beingsensitiveenoughtounderstandwhatisnot said,andrememberingthattheystillneedtobeneeded,andtofeelthereisstillapurposetolife.Caremusttakeintoconsiderationallaspects,thephysical,social, cultural,psychologicalandemotional,spiritualandreligiousneedsofboththedyingandthebereaved. Goodcommunicationandtrustarevital.Aconspiracyofsilenceisdamagingtoall.Mutualtrustisthebasicbuildingblockofcare,thepatientandtheirlovedones musttrusttheprofessionals'competence,andtrusteachother,andallmustworktogetherforthegoodofallconcerned.Anticipateddeathgivespeopleachanceto cometotermswithdying,toplanfortheremainingfuture,toputlifeinorder,tosaygoodbye.Itallowslovedonestostartthegrievingprocesssuddendeathdenies thisopportunity. 2 CaringfortheDying Anticipateddeathhasmanyfacets,andpeoplehavetocometotermswiththeseintheirowntime,andintheirownway.Deathanddyingarenotthesamedyingisa processdeathcanbeseenasthepointintimewhenlifeceases,ordeathcanmeanthetimeafterthispoint,andhowpeopleapproachthiswilldependontheir religiousandpersonalbeliefs.Peoplemaybeafraidofoneaspectbutnotanother,orworryaboutdifferentaspectsatdifferentpointsintime. Careofthedyingalsoinvolvescaringfortheirlovedones.Thefamilymembersparents,grandparentsandsiblings,aswellasotherlovedones,sufferfromshock, depressionandanxiety,inmuchthesamewayastheterminallyillpersondoes,andtheymayalsosharemanyofthesamefears.Theytoohavetocometotermswith thediseaseanditsimpactandunfamiliardemandsonthem.Thesepeople,likethepatient,alsoneedhelptoexpresstheirfeelingsofpain,anger,griefandfear.They mayneedhelptomobilizetheirstrengthsandcapacitiestodealwiththesituation.Theythereforeneedacceptance,helpandsupportthemselves,muchthesame information,andanopportunitytotalkthingsthrough.Talkingthingsthroughwillhelpintherealizationthat

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otherssharefeelings,experiencesandunderstanding.Ithelpsputthingsintoaclearerperspective.Itgivesachancetomoanandcry,toexpresspain,angerandgrief andnotfeelguilty.Itwillalsohelpmobilizeinnerstrength. Patients,familiesandpartnersallneedtotalktosomeonetrustedandhelptocopewiththepatient/lovedonestocopewiththeirownsuffering,andtocopewiththeir ownfeelingaboutillness,disability,disfigurement,deathanddying.Inboththepatientandtheirlovedones,thephysical,psychological,emotional,spiritualandsocial effectswillebbandflow,lastingforhoursordays. Itistraumaticforanyfamilytobetoldthattheirlovedone,intheprimeoflife,hasaterminaldisease.Howmuchworsetobetoldyourchild/lovedonehasasocially unacceptabledisease,e.g.Aids.Parentsmaynowlearnthattheirchildtookdrugsorisgay,orapartnermaynowlearnthattheirpartnertookdrugsorwasbisexual. Theirreactionmaybeoneofanger,shame,guiltandfear,andthismayleadthemtorejectthechild/partner,ortreathim/herasa'leper'.Theytoomayfeellikesocial outcasts.Thisdoubleadjustmentincopingwithhomosexuality/bisexuality/drugtakingandterminalillnesscancreateanimmenseconflictandtrauma.Oftenmany parentsmaysuspecttheirsonisgaybutdenyit,sothattheyalsohavethepsychologicalpaincausedbythelossofthisdefence.Yetoften,whentheextendedfamilyis told,itisdiscoveredthattheyalreadyknowaboutthehomosexualityandwouldhavebeenmoresupportivetotheparentshadtherenotbeenthisconspiracyof silence. Inanyterminalillnessparentsmayresentthepartner,andpartnersinturnmayresenttheparents.Eithermayfeelisolated,andthisisoftencompoundedbyfeelingsof remorse,griefandguilt.Theymayworryaboutwhowilllookafterthemiftheyalsobecomeill.Thiscanmakethefutureappearverylonelyandthreatening.Itmust alsoberememberedthatelderlycarerswhoarecaringforadultchildren,orgrandchildrenwhoseparentsareillorhavedied,canbeunwellthemselves,andthiscan putanaddedpressureonthem. Lovedoneshavetounderstandandcarefortheirownneedsiftheyaretobeabletohelptheirpatient.Thisisnotsomethingmanyofuscandoalone.Realizingthat othersshareyourfeelingsandexperiencesbeginstoputthingsintoaclearer

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perspective.Thefamilymayalsoneedhelpwithcommunicationifthefamilyhavefrequenthelptoventilatetheirfeelings,itmaymakeabigdifferencetoeach individual'sabilitytocope.Thereisoftenasenseoflossandmeaninglessness,andforsomethereisdespairaboutthefuture.Theymayrequireagreatdealofhelp, understanding,supportandacceptance. Parentsofaterminallyillchildoftenfeeltheycannotadmittheproblemeventothemselves,andareoftenveryreluctanttoinformtheirchildrenoftheirsituation,and mayneedhelpandsupporttodothis.Theuncertainprogressionofdiseasecanbedifficulttoexplain.Willthechildcopewiththestressofthis?Thechildhasaright toknowtheresultsoftestsitishisorherillness.Rationalthoughtandexplanationmaynotbeenough,thechildmaybecomeupset,andbehaviouralproblemsmay result.Childrenmayblamethemotherorfatherandseveramainsourceofsupport.Howemotionallycapablearetheytoacceptthis?Itisoftenadultsthatfindthis difficult.Whatcounsellingwillberequired?Evenyoungchildrenneedacceptanceoffactsandhelptowriteawill.Theemphasisshouldbeonthequalityoflifeandits enjoyment,andonfuneralsasacelebrationoflife. Ithasbeenobservedthatinsomefamiliestheillchilddoeswell,butotherchildrenareneglectedbecausealltheattentionisgoingtotheillchild.Livingwithuncertainty aboutthecourseofthediseasecanleadtoextremeanxiety,hospitalvisitscanbetraumatic,andthiscanbecompoundedbythemother'stirednessasillhealthmakes increasingdemandsonher.Womenareusuallytheprincipalcarers.Howwilltheycopewiththeiranxieties?Willstatutoryservicesbeflexibleandresponsive?Will familyandfriendsbesupportive? Siblingsalsoneedsupport,however,andoverprotectioncanbeamajorproblem.Olderchildrenmayalsoneedhelptocopewiththeirfeelingsabouttheirowndeath. Itisimportanttorememberthatillchildrenhavethesameneedsasotherchildrenforplayandstimulation,forfriendshipandaffection.Theyneedhuggingand cuddling.Alternativecaremayberequiredasanemergency,plannedorrespitecare.Thisisveryimportantforamother,especiallyifsheoranothermemberofthe familyisalsoill. Parentswhomaybeverysupportiveoftheirchild'sillnessand

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a'towerofstrength'maycollapseatitsdeathwhentheynolongerhavetobestrong. 3 GriefAsaProcess Griefisnotanillness,butanaturalprocessthatmustbeallowedtorunitscourseandthistakestime.Eachpersonwillhavetoestablishtheirownmethodof recovery.Thereisnorightorwrongwaytogrieve.Thereis,however,apatterntotheresolutionofgrief,andthereishelpavailable.Peopleareoftenfrightenedby theintensityandvarietyoffeelingstheymayexperience.Noonecanresolvegriefforanotherresolutioncanbegainedonlybyexperiencingandworkingthrough theseemotions.Painmaybecomelessintensebutisseldomforgottenmemoriescantriggerperiodsofintensepainlongaftertheevent. Bereavementmaynotbeanisolatedlossbutanadditionalburden.Theprocessofbereavementmaydependontheindividual'sperceptionofthesituationand perceivedabilitytocopewithitanddischargeemotionaltensionscausedbystress.Wordenseesthetasksofgrievingasrecognizingtheloss,releasingthevarious emotions,developingnewskillsandreinvestingemotionalenergy.2 Formostpeoplegriefhasnopredecessor,itspathcannotbeanticipated.Grief,Staudacher remindsus,isaprocess,withstagesthatcanbemovedbetweenorexperiencedsimultaneously.3 Yetitissomethingthatcannotbecircumvented,butmustbefacedin ordertocontinuelifeinameaningfulway. Griefisanessentialelementoflife,itistheprocessofbecomingreanchoredintoalifewithoutthehusband,wife,partner,relativeorfriendforwhomoneisgrieving. Thiscanbeginwithanticipationofthedeath,days,monthsorevenyearsbefore. Watchingalovedonedieandtheperiodfollowingdeathcanbealonelyexperience.Feelingsofisolationcanbecausedbyseclusionfromnormallife,pain,physical distanceandthepriordeathorabsenceoflovedones.Thiscanarouseverystrongemotions,feelingsofanger,sorrow,failureorguilt,someofwhichcanbedeeply buriedinthesubconscious.Thosewatchingmaydenyrealityorbargainforlifetocontinue.Theymaybeinthedeepdepressionofpreparatorygrieforhavebegunto accepttheprognosisandbetryingtoliveonaverydifficultdaytodayprocess.

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Griefispainful,andthelossaffectsmanyaspectsofaperson'slife,notjustfeelingsaboutthelostperson,butalsointellectualprocesses,interpersonalrelations, beliefs,attitudes,emotionsandphysicalhealth.Inordertohelpmanageloss,peopleneedotherswhocanoffercompleteandunconditionalacceptance,empathic understandingandcongruence.Whensomeonelosesalovedone,itisnotonelossbutmany,adeathofaspousemaymeanlossofacompanion,helpmate,motheror fathertothechildren,breadwinner,sexualpartner,cardriver,doityourselfexpert,cooketc. Thesymptomsofnormalgriefare: painfuldejection lossofinterestintheoutsideworld temporarylossofthecapacitytolove physicaldistress preoccupationwiththedeadperson feelingsofguilttowardsthedeceased hostilefeelingstoothers alteredconduct. Theabovearenormalsymptomsofacutegriefandtheonlywaytoresolvethemistoworkthroughthem.Thepainofgriefcannotbeavoidedhealthily.Delayed, suppressedordistortedgriefcancauseproblemsinlateryears. Parkesfoundfourphasesassociatedwithgrief4 (1)Numbness,wherethepredominantfeelingsareshockanddisbelief. (2)Yearning,wherethepredominantfeelingsarereminiscence,searching,hallucinations,angerandguilt. (3)Disorganizationanddespair,wherethepredominantfeelingsareanxiety,loneliness,ambivalence,fear,hopelessnessandhelplessness. (4)Reorganization,wherethepredominantfeelingsareofacceptanceandrelief. Thesephasesoverlap,andwemovebetweentheminourownuniqueway. Parkes'sresearchshowsthattheoutcomeofgriefisaffectedby

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'determinants'ofgrief,someofwhichcanmakegriefmorecomplicatedandprolonged.These'determinants'canbebothexternalcircumstancesandinternalfactors. Wordensummarizesthese'determinants'asexternalandinternalfactors.5 4 ExternalFactors (1)Theplaceofdeath,forexampleifsomeonediesfarawayorismissing,presumeddead,thiscanleadtothepostponementofgrieforitcaninhibititaltogether. (2)Coincidentaldeaths,forexamplefollowinganaccident,wheremorethanonepersoniskilled.Hereeachpersonneedstobeindividuallygrievedfor,orwhere thereisamajorcommunitylosse.g.followingacommunitydisaster,whichmakesgrievingfarmorecomplex,andwherelesscomfortandsupportmaybeavailable. (3)Successivedeaths,whenanotherlossoccursbeforegriefiscomplete. (4)Thenatureofthedeathuntimelydeathismoredifficulttogrieve,andsuddendeathcanbetraumatic,especiallyfollowingadisaster,suicideorhomicide.Thiscan becomplicatedbyextremeguiltatthefailuretosavethevictim.Suchangerishardtoexpress. (5)Socialnetworksareimportant,socialisolationandlackofsupportprolonggrief. 5 InternalFactors (1)Attachmenthistory:apreviouslosscanbereawakened. (2)Lossanddeathhistory. (3)Ageanddevelopmentofthegriever:atcertainvulnerablepointsinthelifecyclegriefmaybeespeciallychallenging. (4)Themoreintimatetheattachment,themoreintensethegrief. (5)Themorecomplextherelationshipthemorecomplexthegrief.Deniedfeelingsandunrecognizedambivalencemakegriefcomplex. (6)Ifthegrieverhasandcanuseareligiousfaith,thiscangiveconsolation.

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Angerisoftenanewreality,andalogicalandnaturalpartofgrieving.Thedirectionangerwilltakewilldependonthesituation,personalityandgender.Itmaybe angeratGod,angerattheunfairnessoftheworld,angerdirectedatselforatothersoreventowardsthedeceased.Inadditiontoanger,guiltcanhitwithoutwarning. Griefcanalsobephysicalheartpalpitations,lossofappetite,overeating,ringingintheears,digestiveproblems,nausea,dizziness,nightmares,interruptedsleep, lethargy,constrictioninthethroat,muscularpains,impededconcentration,poormemory,damphands,drymouthandinsomniaarecommonsymptomsfoundingrief. Griefalsocausesfeelingsofhelplessness,anger,preoccupationwiththedeceased,asenseofpresence,visualandauditoryhallucinations,restlessness,apathy,shock, numbness,forgetfulness,disbelief,sadness,crying,meaninglessness,despair,loneliness,socialwithdrawal,confusionandlethargy.Thesemanifestationsarethesame asthosefoundinstatesoffearoranxiety.ThisisclearlyexplainedbyC.S.Lewis:'Nooneevertoldmethatgrieffeltsolikefear.Iamnotafraid,butthesensationis likebeingafraid.'6 Deathinoursocietyisoften'hidden'.Inearliercenturiesdeathwasmore'present'andless'banished'fromourmidst.Thisprocesshasbeenaccompaniedbyan increaseddenialofdeath,andfearofit. Theprocessofgriefisuniquetoeachindividualanddependsonthedeceased'sjourneyinandthroughlife,thecircumstancesofthedeath,therelationship,the mourner'sownpresentcircumstancesandlifehistorytheseareuniquetoeachindividual. 6 SexRoleDifferences LendrumandSyneremindusthatwearealsoaffectedbysexroledifferences,as'menseemtoneedtoregaincontroloftheirworldmorequickly,aremore immediatelyintouchwithintensesexualfeelingandarealsoawareofthethreattosexualitywhichlossofapartnercanpose...Menfinditdifficulttoexpressthe sadnessofgriefandinmostculturesitisthewomenwhodothewailing.'7 However,bothsexeshaveabasicallysimilarunderlyingpatternofresponsetogrief.

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7 DeathofaChild Whenababyorchilddiesunexpectedlytheshockcanbeimmense.Parentsmaygooverwhathappenedrepeatedly,andwonderiftheycouldsomehowhave preventedthedeath.Theymayblamethemselves,eachotherorotherprofessionalsortheymayfeelveryguilty.Thesearenaturalresponsesevenwhenthechild's deathwasoutsidetheircontrol.Thesefeelingsofblameandguiltareoftensharedbyothermembersofthefamilyaswell,andbyprofessionals,forexample childminders,fosterparents,doctors,healthvisitorsandsocialworkerswhomayhavehadresponsibilityforthechild. Caringforparentswhohavelostababyorsmallchildisdemandingandstressfulwork.KohnerandHenleybelievethattheparents'abilitytogrieveandeventuallyto accepttheirlossislargelydependentontheirexperienceofprofessionalcare.8 8 GriefinChildhood Discussingandexplainingdeathtochildreninthefamilyisaverydifficulttaskandcanbeevenmoredistressingwhenparentsareinthemidstoftheirowngrief.They maytryto'protect'thechildrenfromdiscussionofdeathandleavethemoutoftheritualsassociatedwithdeath.Thiscanleavechildrenfeelinganxious,bewildered andaloneatatimewhentheymostneedhelpandreassurance. Childrenwhomaynotfullyunderstandneedloveandacceptancefromthesignificantpeopleintheirlivestohelpthemmaintaintheirownsecurity.Childrentooyoung toverbalizetheirfeelingsmayexpressthemthroughbehaviourandplay.Itisveryimportanttorememberthat,regardlessoftheirabilityorinabilitytoexpress themselves,childrendogrieve,oftenverydeeply.Theirgriefprocessissimilartothatofadults,buttheymayalsofearthattheytoomaydie,ortheymayfeelleftout, orfearthattheysomehowcausedthedeath,orthatthesignificantpeopleintheirlifemayalsodie.Thesefearscanleadtoregression,tobehaviourpreviously outgrown. Itisveryimportanttoanswerchildren'squestionshonestly,toallowthemtoexpressthemselves,andnottotellachildwhatheshouldfeel.Liesandeuphemisms complicatechildren'sgrief.

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Theyknowtheyarenotgettingthewholetruth,andthisleadstomistrustatatimewhenreassuranceismostrequired.Itisimportanttotryandexplainthecauseof deathandtoexplaintheassociatedrituals.Itisveryimportanttobeloving,accepting,truthfulandconsistent.Howwellchildrencopewithbereavementdependson manyfactorsincludingtheirage,thecharacteristicsofthedeadperson,siblingorder,andaboveallthereactionsandavailabilityofthesignificantothersintheirlife. Childrenwillbeaffectedbydeathinwaysdependingontheirdevelopmentalstage.Ababywillbeaffectedbytheparents'emotionalstateandmaymissthedeceased. Theymayhavesleepingproblemsandweightloss,andappearveryunsettled.Toddlersdonotunderstandthepermanenceofdeath,nordotheyeasilydistinguish betweenfactandfantasy.Theymaywonderwhattheydidwrong,orsufferfromseparationanxiety. Threetosevenyearoldsmayactoutthelossinplay,andaskquestionswithoutrealunderstanding,whichcanbeconfusingforparents.Theywilloftentryto comfortparentsinwaystheyhadbeenpreviouslycomforted.Theymaysearchforthelostone,and/orbecomefearfulthattheyortheirparentsmaydie,andbecome afraidtoletthemoutoftheirsight. Seventotwelveyearoldsthinkconcretelyandhavelittleabilitytodealwithsubtleties,ambiguitiesoreuphemisms,socaremustbetakennottosay,'WelostFred' or'Grandpahasgonetosleep',ortheymaybeafraidofbeinglostorgoingtosleep.Atabouttenyearsofagetheirreversibilityofdeathbeginstobegrasped,and theyrealizethattheytoowilldieoneday.Overthisageachildperceivesthefinalityofdeathmuchasanadultdoes. Theunderstandingofdeathisagerelatedbutnotagespecific. Unresolvedgriefinadulthoodcanfrequentlybeattributedtoaseriouschildhoodloss.Parentsmaybeunabletohelpeachother,letaloneachild,becausetheyare lockedintheirownpain.Membersofthefamilymayneedhelpbothtogetherandseparately.Familymembersmayneedhelptorecognizethattheymayallgrieve differently. 9 FaithinGrief Mostpeopleturntotheirrelativesandfriendsforcomfortsomewillturntotheirfaithforsupport.Faithmaybeorbecome

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importantatthistime.Oftenthelongignoredfaithofchildhoodtakesonanewsignificance.Forpeopleofmanydifferentfaiths,thiscanbeasourceofstrengthand comfort.FortheChristian,JewandMuslim,deathisagateway,anewbeginning,afulfilmentofhumanlifeandatourfinalunknowndestinationtotalfulfilmentistobe found.Formany,then,deathisnotsomethingtofearbuttowelcome. BasilHumeremindsusthatwordslike'hope','expectation'and'lookingforward'areimportantintheeveningoflifeatthistimepeoplelookforwardtothevisionof God.Thiswillvarywithdifferentreligiousgroups.FormanyitmaywellbetheecstasyoflovewhichisunionwithGod.Hume,writingaboutChristianity,remindsus that'Thisshouldbeacauseofpeace,acauseofjoyonedayforward,onestepnearer.'Thismayalsoholdforotherreligiousgroups,howeverGodisdefined.9 10 Rituals Ritualsassociatedwithdeathareveryimportantandvarywidelywithdifferentethnicandreligiousgroups,andalsowithingroups.Ritualshelpforcepeopleto confronttherealityofaloss,andenablethosewhoaregrievingtocometogethertoexpresstheirgriefsupportedbythecommunity.Ritescommunicatetothe communitythenewstatusandroleofthesurvivingpartner,theyprovideemotionalreleaseandofferanopportunityforthelossandassociatedemotionstobedealt with.Theylinkourindividualexperiencewiththecorporateexperienceofthecommunity. Eachculturehasitsownmourningritesandwaysofhandlingdeath.Thesemaybeintendedforthedead,buttheyalsofulfilfunctionsfortheliving,helpingthe bereavedtorecognizethelossandprovidingaplacefortheexpressionofgriefpubliclyinaprescribedway.Thesealsohelptomarkatransition,helpingtosay goodbye.Ritualsindifferentculturesalsohelptolimitmourning.Itisimportantforustodevelopasensitivitytodifferentrequirementsoffaithinourmulticultural society. WithintheChristianfaith,mostdenominationshaveaccommodatedtocontemporarypractices,thoughsomestillrefusecremation.Somesectswillnotacceptcertain medicalproceduressuchasbloodtransfusionorapostmortem.Catholicsand

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someAnglicanswillexpecttobegivenextremeunction,andperhapscelebratetheEucharist.Thiscanbeveryimportanttoboththedyingandtotheirfamilies. IntheJewishfaithdeathmustberesisted,andbelieversalwayshopethatthisisnottheend.Atthepointofdeath,therabbiwillreadthedeathbedconfessionoverthe dyingpersonwhichcarriesthepromisethatlifemaycontinue.Inanorthodoxfamily,asthepersonisdying,thenearestrelativeswillwanttobepresenttosaycertain psalmsand,finally,theShema(orbasiclaw).Thebodyissacredandmustbelaidoutproperlybymembersofthesamesex.Theimmediatefamilymembersconduct andareatthecentreofthemourningritual,whichstartsimmediatelyondeath.Oncedeathhasoccurred,thereareothersacreddemands.Thefirstsevendays(shiva) arethemostintenseperiodofgrief,andthenextthirtydaysmarkaperiodoflessermourning.Afterayearastoneissetatthegrave,andthebereavedmayletgoof theirgriefandremarryiftheyareready. Muslimsareenjoinedtopreparefordeathasaproperendtolife,throughlivingapiouslife.DeathisnottobefearedinlivingoutGod'swill.Indeeditcanbe welcomedifitcomesinthepursuitofGod'scommands.Asdeathapproaches,debtsshouldbepaid,enemiesforgiven,reconciliationsoughtandawillmade.The bodyisthenpreparedinreadinessfordeath,bytidyingthehair,washingandrecitingtheQur'an*andbyprayers.Tokeepthedevilaway,theKalimaisrecited aloud.Afterdeaththebodyisrituallywashedandpreparedforburial.NonMuslimsshouldremembernevertotouchthebodyofadeadMuslimunlesswearing gloves.Burialiswithintwentyfourhours,andmourninglastsfortydays.Asdeathisnotadisaster,griefshouldbesubduedortriumphant. ForHindusandSikhsdeathmustnotcomeunawares.Itisimportant,therefore,tobeopenwiththeterminallyillpersonandtheirfamily.Familyandothermembersof thecommunityshouldbepresenttopreparethedyingpersonfordeath.Thiscanincludereadingorchantingscripture,andotheractsofdevotion,includingburning incense,sprinklingthepatientwithholywaterandgivingfoodanddrink.Hindusseektodieonthefloor.Ondeath,furtherlamentationsandritualsareperformed. Thesecanbeverydisturbingandmisunderstoodinapublicinstitution.Hindureligiouspracticesvaryenormously.Thebodyshouldnot

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betouchedbyanonHindu,andcremationshouldbedoneonthedayofdeathorassoonaspossible.Thethirteenthdaymarkstheendofofficialmourning. WhenaSikhdiesthefamilylaythebodyoutandensurethefivesignsofSikhismareworn.Cremationismandatoryandshouldbeassoonaspossible.Official mourninglastsfortendays. Differentculturalandracialbackgroundsmustalwaysbeconsidered,andaknowledgeofbeliefsaboutdeath,afterlifeandmourningpracticesindifferentreligiousand culturalgroupsisessentialinourmultiracial,multiethnicandmultibeliefsociety. 11 HelpingSomeoneWhoisBereaved Helpingsomeonewhoisbereavedisoftenmoretodowith'being'than'doing'.Thebereavedneedtobeabletosharetheirinnerfeelings,totalkandtograpplewith the'why'.Listeningshouldbewithacceptance,understandingandempathy,allowinggrieverstofindtheirownwords.Itisimportanttoindicateunderstandingofthe feelingsexpressedandtobeabletolinkthemwithexperienceandbehaviour,andsotohelptheexpressionandacknowledgementoffeelings.Offeringclear boundariesgivessafetyandcontainment,whichisimportantinencouragingexpressionandacceptanceoffeelings,ambivalenceandguilt.Thisdemandssensitivityand selfawareness. Shockmaymeanthatinformationneedstoberepeated,andthesameissuesmayneedrepeateddiscussionasbereavementmaymaketheabsorptionofinformation difficult.Denialoffeelingsmayleadtodepression,andagreaterinabilitytoabsorbtheinformationgiven. Professionalsarelikelytobeabletoofferbettersupportforbereavedpeopleiftheythemselvesaresupported.Thissupportshouldincludeprovisiontosharetheir experiencesandfeelings,supportivemanagementandteamwork,aswellasbasicandinservicetrainingonbereavementandtheessentialskillsneededtohelp bereavedpeople. Deathneedsaholisticapproach,rememberingeachpersonisunique,andshouldbeconsideredasawhole,takingaccountofthephysical,emotional,psychological, socialandspiritual

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dimensions.Abalancemustbemaintainedbetweenacknowledgingthelossandtryingatthesametimetomaintainapositiveperspective.Itisimportanttotalkofthe loss,andofthevalueofthepersonwhodied,abouthowheorsheenrichedthelivesofothers,andtolooktothepositiveinthefuture. Helpcancomefrommanysources,fromfamily,friends,faith,supportgroupsorprofessionals.Complicatedgriefmayneedprofessionalhelp.Inmakingareferralfor professionalhelp,feelingsofguilt,angerorrejectionneedtoberecognized,acceptedandworkedthrough. Notes

1 2 3 4 5 6 7 8 9

SeeJ.Bowlby,AttachmentandLoss(Harmondsworth,Penguin,1980). J.W.Worden,GriefCounsellingandGriefTherapy(London,Tavistock,1983). C.Staudacher,BeyondGrief:AGuideforRecoveringfromtheDeathofaLovedOne(London,CondorBooks,1987). C.M.Parkes,Bereavement:StudiesofGriefinAdultLife(Harmondsworth,Penguin,1985). Worden,GriefCounselling. C.S.Lewis,AGriefObserved(London,Faber,1961). S.LendrumandG.Syne,GiftofTears:APracticalApproachtoLossandBereavementCounselling(London,Routledge,1992),30. N.KohnerandA.Henley,'Miscarriage,stillbirthandneonataldeath',inGuideLinesfortheProfessionals(London,SANDS,1991). B.Hume,ToBeaPilgrim(London,StPaulPublications/SPCK,1984),226.

SourcesofSupport TheCompassionateFriends,NationalSecretary,6DenmarkStreet,BristolBS15QD(telephone01179292778). Cruse(thenationalorganizationforthewidowedandtheirchildren),126SheenRoad,RichmondTW91UR(telephone01719404818/9407). TheFoundationfortheStudyofInfantDeathsCotDeathResearchandSupport,15BelgraveSquare,LondonSWIX8PS(telephone01712351721). GayBereavementProject,46WentworthRoad,LondonNW11ORL.

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7 ATheologicalExaminationoftheCaseforEuthanasia
PaulBadham 1 TheStrengthoftheTraditionagainstEuthanasia Allthemainstreamchurchesareresolutelyopposedtothepracticeofeuthanasiaandtoanychangeinthelawwhichwouldmakeitmorelikelytooccur.Thismaybe illustratedbothintheevidencesubmittedbyChristianbodiestotheHouseofLordsCommitteeonMedicalEthics,1 andintheuncompromisingdeclarationofthe latestCatholiccatechism.AccordingtothiscatechismpromulgatedbyPopeJohnPaulIIin1992andpublishedinEnglishin1994,
Anactoromissionwhich,ofitselforbyintention,causesdeathinordertoeliminatesufferingconstitutesamurdergravelycontrarytothedignityofthehumanpersonandtothe respectduetothelivingGod,hisCreator.Theerrorofjudgementintowhichonecanfallingoodfaithdoesnotchangethenatureofthismurderousact,whichmustalwaysbe forbiddenandexcluded.2

FormanyChristiansthereforethequestionofeuthanasiaisanonissue.Itissomethingtheirtraditionhasalwaysforbiddenandtheirleaderscontinuetooppose. CatholicsandEvangelicalsareunitedonthismatter.ForthevastmajorityofmembersofbothChristiantraditionseuthanasiaissimplywrong.Insofarasbeinga Christianincludesbeingamemberofacommunityoffaithandsharinginitsmoralethos,itwouldseemtomanyChristiansthattheissueisclosed.

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2 TheRelevanceofReligiousFactorsintheCurrentDebate ManyChristiansfeelstrengthenedintheirprincipledstandagainsteuthanasiabythefactthateuthanasiaisstronglysupportedbytheBritishHumanistAssociation. IndeedtheevidenceofthatassociationtotheHouseofLordspleadedthecaseforallowingeuthanasiaonthegroundsthatanabsolutiststanceonthesanctityof humanlife'dependedonareligiousoutlookwhichnoteveryoneshared'andurged,'itisparticularlyhurtfultorequiresomeonewhodoesnotbelieveinGodorafterlife tosufferintolerablepainorindignityindeferencetoaGodorafterlifehedoesnotaccept.'3 InfacttheHouseofLordsCommittee'gavemuchthought'tothe considerationthat'forthosewithoutreligiousbelief,theindividualisbestabletodecidewhatmannerofdeathisfittingtothelifewhichhasbeenlived.'4 Byimplication, therefore,theSelectCommitteerecognizedthattheyweredealingwithasituationwheretherewasasignificantdividebetweentheviewsofreligiouspeopleonthe onehandandthoseofsecularistsontheother,andtheyrecognizedtheirdutytotryandpreventthisfactfromblurringtheimpartialityrequiredofthemasabody seekingtoactonbehalfofthecommunityasawhole. Howeverthefactthatdivisionofopinionabouteuthanasiatendstofollowdifferencesofopinionaboutmattersofreligiousbeliefisanimportantconsiderationwhich needstobebroughtintothecurrentdebate.Characteristicallyeuthanasiaisdebatedaseitheramedicaloraphilosophicalissue.Onthemedicalfront,proponentsof euthanasiaclaimthatthesufferingsenduredbyatleastsometerminallyillpeoplecouldjustifythelegalizationofvoluntaryeuthanasia.Bycontrast,opponentsof euthanasiaarguethatgoodmedicalpracticecanalleviatesuchsufferinginotherways,andthatthetrustbetweendoctorandpatientrequiresacontinuedbanonsuch socalled'mercykilling'.Onthephilosophicalfront,thedebatetendstofocusonissuesofhumanrightsandpersonalautonomyweighedagainsttheneedsofsociety asawhole. Yetalthoughthesearethetermsinwhichtheissueispubliclydebated,thewaypeopleevaluatethevariousconsiderationsdependsforthemostpartontheirreligious outlook.Thebishops

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andthemembersoftheBritishHumanistSocietybothhaveaccesstothesamemedicalinformationandtothephilosophical,socialandlegalconsiderationsadduced bybothsidesintheeuthanasiadebate.ThedivideactuallycomesonthetheologicalviewthateuthanasiainfringestheprerogativesofGod,whoalonehastherightto determinethehourofourdeath.Itisthevalidityofthisconsiderationwhichoughttobequestionedandthepurposeofthischapteristodojustthat. 3 ChangingAttitudesinChristianEthics AlthoughmanyChristianstendtoassumethattheirbeliefsareabsoluteandunchanging,thisisnotthecase.ManythingsthatChristiansofaformeragebelievedtobe morallyacceptablearenowheldtobewrongandviceversa.Slaveryistheclassicexampleofsomethingformerlyregardedasacceptablebutnowregardedwith abhorrence.Bycontrast,theacceptabilityofinterestchargesisanexampleofsomethingtotallycondemnedbyoneagebutseenasmorallyneutralinanother. However,medicalethicsprovidesthelargestnumberofinstanceswhereChristianstodayalmostunanimouslyacceptasgood,practiceswhichtheirpredecessorsin thefaithregardedasevil.FormanycenturiesChristiansforbadethegivingofmedicine,deemingitequivalenttothepracticeofsorcery.5 Thepracticeofsurgery,the studyofanatomyandthedissectionofcorpsesformedicalresearchwereallatonetimefirmlyforbidden.6 Laterthepracticesofinoculationandvaccinationfaced fiercetheologicalopposition.Indeedin1829PopeLeoXIIdeclaredthatwhoeverdecidedtobevaccinatedwasnolongerachildofGodsmallpoxwasajudgement ofGod,vaccinationwasachallengetoheaven.7 ForsimilarreasonstheinitialuseofquinineagainstmalariawasdenouncedbymanyChristians.8 Theintroductionof anaesthesiaand,aboveall,theuseofchloroforminchildbirthwereseenasdirectlychallengingthebiblicaljudgementthat,becauseoftheirinheritanceoftheguiltof Eve'soriginalsin,allwomenmustfacethepenaltythat'inpainyoushallbringforthchildren'.9 Consequentlytheuseofchloroforminchildbirthwasvigorouslyattacked frompublicpulpitsthroughoutBritainandtheUnitedStates,10andQueenVictoria'sacceptanceofsuchtreatmentwasprofoundlycontroversial.

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TherootobjectiontoallthemedicalpracticesmentionedabovewasthebeliefthatthedutyofhumanbeingswastosubmitinpatiencetowhatGodhadwilled.All innovationsinmedicalpracticewereinitiallyseenasimplyingalackoffaithandtrustinGod'sgoodpurposes.Doctorswereaccusedof'playingGod',ofbeing unwillingtoacceptthatGodknowswhatisrightforaparticularperson,ofpryingintosacredmysteriesandareasofGod'sownprerogative.11Yetgraduallyall mainstreamChristianchurcheshavemodifiedtheirteaching,andtheformerlycriticizedactivityofthedoctorhasitselfcometobeseenasitselfachannelofGod'slove andthevehicleofhisprovidence.Consequentlyalthoughthepracticeofmedicinefacedoppositioninearliercenturies,averycloserelationshipnowoftenexists betweendoctorsandclergy,andmedicallytrainedmissionarieshavemadeasubstantialcontributiontotheworldwidediffusionofWesternmedicine.Christianstoday arehappytothinkofdoctorsasfulfillingthewillofGodinrestoringtohealthpersonsstruckdownbycurableillness.Insteadoftheiractionsbeingseenaschallenging divineprovidencetheyareseenasagentsofthatprovidence. Thesalientpointforourpresentpurposeshoweveristonotethatthesameargumentswereusedinthepastagainsttheuseofmedicinetopostponedeathasareused todayagainsttheuseofmedicinetobringdeathforwardinthecaseofterminalillness.Inbothinstancesthekeyreligiousargumentwasthebeliefclassicallyexpressed byAquinas,that'Godalonehasauthoritytodecideaboutlifeanddeath.'12ThehumanobligationissimplytoacceptandabidebythewillofGodinsuchmatters.But oneimplicationofthisisthattheChristianchurchestodayarebeingwhollyinconsistentincontinuingwithanabsolutestandagainsteuthanasiawhileenthusiastically supportingmedicaleffortstofightdisease.Thechangewhichhastakenplaceintheunderstandingofdivineprovidenceasitaffectstheacceptabilityoffightingdisease hasequalapplicationtothepossibilityofacceptingthepracticeofeuthanasia.HenceIsuggestthatitislegitimateforatheologiantolookmorecloselyatthe argumentsagainsteuthanasiaandreconsideritspossibleacceptabilitytotheChristianconscience.

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4 ADefinitionofVoluntaryEuthanasia TheunderstandingofeuthanasiawhichIamworkingwithinthischapteriseuthanasiaasassistedsuicideinthecontextofterminalillness.Theessenceofthevoluntary euthanasiacampaignistheideathatafree,autonomouspersonshouldhavetherightbothtochoosewhenthestruggleagainstterminalillnessshouldbeabandoned, andalso,iftheprocessofdyingentailssufferingofakindheorshedoesnotwishtoendure,thepossibilityofobtainingassistanceinbringingtheprocesstoanend withoutthecollaboratorfacingamurdercharge.Itisimportanttostressthatoneisnotseekinga'right'todie,suchaswouldoveridetheequallyimportantautonomy ofthedoctor.Nooneshouldbesaddledwithadutytokillsomeonewhoasksfordeath,andmanyrequestsforeuthanasiawillcontinueasnowtobeexpressionsofa longingforthereliefofpainorsuffering,towhichtheprovisionofbetterpalliativecarewilloftenbeabetterresponsethanaccedingtotherequest.Neverthelessthe supportersofvoluntaryeuthanasiabelievethattherearecaseswhereapersonmayrequesthelpindying,andwherethepersonappealedtowouldbemorallyjustified ifheorshewerewillingtoaccedetosucharequest.Ihaveexploredtheproblemsofdefiningsuchcaseselsewhere.13InthischapterIamassumingthatthereareat leastsomecaseswhereeuthanasiaasassistedsuicidecouldbemorallyjustified,andamthenarguingthatthisisapositionwhichacommittedChristianbelievercould accept. 5 TheBible'sAttitudetoSuicide OneofthemainsourcesofChristianmoralityistheteachingoftheBible.Inmostdiscussionsofsuicideoreuthanasia,Christianstendtoassumethatthecanonof scriptureforbidssuchpractices.ButitisactuallyShakespearespeakingthroughHamletwhodeclaredthat'TheEverlasting[has]...fixedhiscanongainstself slaughter.'AndthereforeaccordingtoHamletthe'calamityofsolonglife'mustbeenduredandwemust'ratherbearthoseillswehave,thanflytoothersthatwe knownotof.'14Itisnotthecasethatthecanonicalscripturesactuallyforbidsuicide.Theyforbidmurder,andhenceperhaps,byimplication,suicide,butthe implicationisnotspeltout,andsuicides

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arerecordedintheBiblewithoutcondemnation.Letmequicklyillustratethisbyrunningthroughthem.SamsonissaidtohavebeengivenstrengthbyGodtopullthe houseofDagondownuponhisownheadsothathewoulddiewithhisenemies.15ThesuicidesofKingSaulandhisarmourbearerinordertoescapethehumiliation ofcaptureandmockeryarereportedwithoutanynegativecomment,andtheirdeathswerelamentedbythewholeofIsrael.16EleazurAvaranissaidtohave'givenhis lifetosavehispeopleandtowinhimselfaneverlastingname'bystabbingawarelephantfrombeneathsothatitfellonhimandkilledhimaswellastheenemieswhom itcarried.17Razis'felluponhisownsword,preferringtodienoblythantofallintothehandsofsinnersandsufferoutragesunworthyofhisnoblebirth.'18Innoneof thesecasesisthereanyhintofdisapproval.IntheNewTestamentweareofcoursetoldthatJudasIscariothangedhimself,butthisissimplyreportedwithout comment.19ThewoepredicatedonJudaswaspriortothesuicide,notconsequentialuponit.20Theoverallpictureofthebiblicalsuicidesmightsuggestthatthe kamikazedeedsofSamsonandEleazurwerepraiseworthyandthe'deathbeforedishonour'attitudeofSaulandRaziswascommendable. 6 BiblicalAttitudestotheWillingSurrenderofLife ForChristians,thefoundationforethicalbehaviouristheimitationofChrist.Historicallyhediedacrueldeathatthehandsofhisenemies.Yetstrangelythefourth GospelpresentsitastheproductofJesus'ownchoicetolaydownhislife:'Noonetakesitfromme,Ilayitdownofmyownaccord.'21InoneofJesus'bestloved parabolicimages,hepictureshimselfasagoodshepherdreadytolaydownhislifeforhissheep,andwhatisoftenoverlookedisthattheimagerymakesnosense exceptonthesuppositionthatacaringshepherdmightbewillingtomakesuchachoice.22Jesusalsotaughtthatareadinesstodieforanotheristheultimatetruetest offriendship,'Greaterlovehasnomanthanthisthatamanlaydownhislifeforhisfriends.'23Suchasayingmaynotbestrictlyrelevanttoadiscussionofsuicide, thoughitisinterestingtorecallthattheseversescameintothemindofScottintheAntarcticwhenthedyingCaptainOateswalkedoutintothesnowtoperishquickly andtherebyenhancethechancesof

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survivalforallhiscolleagues.Whatsuchversessuggestisthatdeathisnottheultimateeviltobeavoidedatallcosts.Itissomethingwhichcanbelegitimately embracedasapositivegood.Thesanctityoflifeisnotabiblicalabsolute.Itisavaluewhichhastobebalancedagainstothervalues. 7 TheChristianAcceptanceofDeath AcceptanceofdeathinapositivespiritwasforcenturiesperceivedasanormativeChristianattitude.StPaulseemsconsciouslytohavechosentogotoJerusalem eventhoughheknewthatsuchadecisionwouldprobablyleadtohisdeath.24Yethefeltnoconcernaboutthisprospect:'Iamonthepointofbeingsacrificedthe timeofmydeparturehascome.Ihavefoughtagoodfight.Ihavefinishedmycourse.Ihavekeptthefaith.Henceforththereislaidupformeacrownof righteousness.'25Duringthecenturiesofpersecution,awillingnesstodieforthefaithwasdeemedtobeoneofthesupremeChristianvirtues.IndeedStAthanasius citedtheeagernesswithwhichChristiansofhisagesoughtoutmartyrdomasinitselfaproofoftheresurrectionofJesus.ForAthanasius,itwasaxiomaticthat Christianshadnofearwhatsoeverofdeathbutlookedforwardtoitwithjoyfulanticipation.26Inthenineteenthcenturymissionarieswillinglywentouttothe'white man'sgrave'ofmalarialWestAfricaforthesakeoftheChristianGospel.Ofcoursewillingnesstofacemartyrdomorhighriskofdiseaseforthesakeofspreadingthe Gospelarenotpreciselywhatisnormallymeantbysuicide,foreventhoughdeathmayhavebeenvirtuallycertain,itwasnotchoseninitselfbutwasthebyproductof otherchoices.Ontheotherhand,suchchoicesdodrawattentiontothefactthattheChristiantraditiondoesnotseedeathasafatetobeavoidedatallcosts,butas onewhichmaybelegitimatelyacceptedforsomesufficientcause. Whenweturnmoreexplicitlytothequestionofwhetherchoosingdeathmightbealegitimatealternativetocontinuingwithlife,themostrelevanttextswouldseemto bethosewhichdiscussthevalueoflifeinthecontextofterminalillness.Clearlythereareabundantverseswhichspeakoftheworthwhilenessoflifewhenoneis enjoyinghealthandvigour.Insuchcircumstancesthethoughtofdeathisverybitter.27Butwhendeath

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comesattheendofalonglifethesituationisverydifferent:'Odeath,howwelcomeisyoursentencetoonewhoisinneedandisfailinginstrength,veryoldand distractedovereverythingtoonewhoiscontrary,andhaslosthispatience!'28Andifthemovementforvoluntaryeuthanasiawerelookingforatextwhichsummed uptheirwholeperspectiveitmightbeEcclesiasticus30:17,'Deathisbetterthanamiserablelife,andeternalrestthanchronicsickness.'Myargumentisthatitis exactlythisjudgementthatamodernChristianshouldbeallowedtomakeandtoactuponintheclosingstagesoflife.Frombothabiblicalperspectiveandfromthe perspectiveofthemainstreamChristiantradition,deathisnotsomethingtobefeared,butwhenitcomesinthefullnessoftime,itistobewelcomed.Itistragicthatthis dimensionissomissingincontemporaryChurchlifethatmodernhymnbooksasteriskforsuggestedomissiontheverserelatingtodeathinStFrancisofAssisi's famousCanticle:

Andthou,mostkindandgentledeath, Waitingtohushourlatestbreath, Opraisehim,alleluia, ThouleadesthomethechildofGod, AndChristourLordthewayhastrod Opraisehim,alleluia.29

Muchofthesufferingassociatedwithoverstrenuouseffortstoholdbacktheinevitablewouldbeavoidedifonlysuchattitudeswereonceagaincommon.Froma Christianperspectivedeathisbelievedtobethegatewaytoanew,richerandfullerlifewithGod.Ifsuchbeliefsaretrue,thenwhendeathcomesinthefullnessoftime itshouldbeembracedandaccepted. 8 DoesChoosingDeathImplyDespairingofGod'sGoodness? Wehavealreadyseenthatnoprohibitionofsuicidecanstraightforwardlybederivedfrombiblicalteaching.Itishoweverstronglyassociatedwithtraditional assumptionsaboutdivineprovidence,thevirtuesofpatienceandsuffering,andthesensethatactuallytokilloneselfisultimatelytodespairofthelovingpurposesof God.Thepresumptionhereisthatanauthentic

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ChristianattitudeshowsitselfinacceptinginpatiencewhatGodhaswilled.Theproblemisthattheframeworkofbeliefherepresupposedisnotonewhichthetypical contemporaryChristian,whetherpriestorlay,seriouslybelievestoday.Aswehavealreadyseen,theChristianunderstandingofprovidencehasprofoundlychangedin relationtodisease.Itisnolongerseenasadivinevisitationorjudgementsenttopunishourwickednessortryourpatience.Instead,illnessisviewedbyChristiansas wellassecularistsassomethingduetonaturalcauseswhichsciencecaninvestigateandmaybeabletocureoralleviate.Andthesamespiritofautonomywhichleads ustocombatdiseasewhilewecan,mayalsoleadustocalloffthebattleandsurrendertodeathwhenthatseemstheinevitableoutcome. 9 TheImplicationofChrist's'GoldenRule'forSuicideandEuthanasia OnekeyprincipleforaChristianethicistheyardstickrecommendedbyJesusinwhatChristiansregardashis'goldenrule'fromtheSermonontheMount,namely, 'Alwaystreatothersasyouwouldlikethemtotreatyou.'30Throughoutlife,one'shopeisthatifonefallsill,onewillbeabletoobtainmedicalhelptoberestoredto lifeandvitality.Onthisprincipleonewouldseektoensurethatmedicaltreatmentwasaswidelyavailableaspossibletoallpersonssufferinganykindofdiseaseor infirmity,whetherofmindorbody.DoctorsandnurseswhoministertothesickinthiswayarewidelyrecognizedbyChristiansasgenuineagentsandembodimentsof God'sprovidentiallove.Christiansoftendescribetheprofessionsofmedicineandnursingas'vocations',thatis,jobswhichpeoplemayfeelcalledbyGodto undertakeforthegoodofhumanity.Isuggestthesameprincipleshouldbeupheldwhenobediencetothegoldenruleleadsadoctortohelpapatientoutofterminal andhopelessmisery. Thekeyassumptionbeingmadehereisthatinallcircumstanceswhereonemightjudgeitmorallyjustifiedforpeopletoendtheirlivesitwouldbeequallyjustifiablefor otherstohelpthem.Thatseemstometheclearimplicationofthegoldenrule.Suicideisnotalwayseasyorpracticalforahospitalizedpatientwhomayonlybeableto saveupsleepingpillsoranalgesicsforamortaloverdosebyforgoingtheiruseinthepreviousdaysatthe

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costofhoursofpainorwakefulness.Assistedsuicide(i.e.euthanasia)isoftenverymuchthepreferredoption,andincircumstanceswherepatientanddoctoragree thatthisisthebestcourseforthatindividualitseemsrightthatitshouldnotbeprevented.Euthanasiahastwofurtheradvantagesoversuicide.Firstisthefactthatifthe patienthastoactalone,heorshemaydieprematurelyatatimeoftemporarydepressionorpain,whereasifdiscussionwithinformedmedicalopinionispossible,the decisionmaybedelayeduntiltherereallyisnomorelikelihoodofworthwhilelife.Secondly,underthepresentlaw,suicidemustalmostalwaysbeasolitaryandfurtive death,forifrelativesorfriendswerepresentatthetimeoftheacttheycouldbeprosecutedasaccomplices.However,ifeuthanasiaweretobecomepermissible,a patientcoulddiewithfamilyandfriendsaroundthebedside. Itisalsoimportantforsocietyasawholethatknowledgeabout,andaccessto,easymeansofkillingoneselfshouldcontinuetoberelativelyrestricted.Suicideisoften atemptationtoteenagerswhoareinatemporarystateofdepressionbutactuallyhavegoodgroundsforconfidenceintheirfutures.Insuchcasestheirignoranceof easymeansofselfdestructionoftenservesasausefuldeterrent,anditisgoodthatthisshouldcontinue. 10 IsaRequestforEuthanasiaaDenialofChristianHope? Somesuggestthattoacceptthatoneisnotgoingtorecover,andthereforetorequesthelptodie,isanactoffaithlessdespair,aproclamationofhopelessness,andas suchanoffenceagainsttwoofthecentraltheologicalvirtuesfaithandhope.Hereitisimportantthatweconfineourselvestotheverylimitedcontextofour discussion.Weareconsideringcaseswheretherearenorealisticgroundsforsupposingthatrecoveryispossible,andwhereevenifsomelimitedremissionmight occur,itwouldatbestbetemporary.Thereseemsnovirtue,whethertheologicalorother,inselfdelusion.Honestappraisalandawillingnesstofacerealityseemfar moreappropriatestances.Moreover,itwouldbeatotaldenialofthemostbasicChristianbeliefstolimithopetothisworld.AsStPaulputsit,'Ifitisforthislifeonly thatChristhas

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givenushope,weofallpeoplearemosttobepitied.'31Andifoneisspeakingofhopeinthecontextofthethreetheologicalvirtuesoffaith,hopeandlove,itisworth remindingourselvesthat,fromaNewTestamentperspective,faithandlove'bothspringfromthathopestoredupforyouinheaven.'32Whenonespeaksofthe 'Christianhope'oneisspeakingofthehistoricChristianbeliefinalifeafterdeath.Thisisthecontextinwhichfaithandhopearebeingconsidered.Inasituationwhere aperson'slifeisclearlydrawingtoitsclose,itcouldbeanaffirmationoffaith,hopeandloveforapersonvoluntarilytochoosedeath,entrustinghisorherdestinyinto thelovinghandsofGod. TheunderstandingofGodpresupposedhereisthatpictureofGodwhichismostdistinctiveofJesus,namelythatGodislikealovingfatheralwaysreadytoaccepthis prodigalchildren.33ClearlyonsomeotherunderstandingsofGod,suicidewouldbetheultimatefolly.IfGodwerelikeaheavenlytyrantwhowoulddamnasuicideto endlesspunishmentontheanalogyofarulerwhomightsentencetodeathadeserterintimeofwar,theneuthanasiawouldbeanactofunimaginablefolly.Butthis viewofGodisreallyincompatiblewiththepicturegiventousintheteachingofJesus,andthoughacceptedbysomeinthepasthaslittlesupportincontemporary Christianity.NewTestamentcriticismhasshownfairlyconclusivelythattheanalogyoffatherhoodwasveryrareinancientJudaismpriortoJesus,andyetwasJesus' ownconstantusageconcerningGod.ItisalsoapparentthatJesus'teachingofthenecessityforforgivenesswasthemostcontroversialaspectofhisthought,andis thereforealmostcertainlydistinctiveofhim.Giventhis,aChristianmayfeelconfidentthatGodwouldshowthesameloveandcaretoanactualsuicideasJesus' modernfollowersintheSamaritanmovementseektoshowtothosewhoonlymaketheattempt. 11 IsaSuicideLikeaDeserteroranUninvitedGuest? Thecomparisonofasuicidewithadeserterabandoninghispostwhileunderattackseemsmostineptinthekindofeuthanasiawearediscussing.Givenbeliefinany kindofprovidentialorder,onemightconcludethattheonslaughtofterminalillnesswastheclearestpossibleindicationofadivineintentiontorecallonetoanother

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station.HencethegroundsforcondemningsuicideinBlackstone'sLawsofEnglandasan'invasion'oftheAlmighty'sprerogativesby'rushingintohispresence uncalledfor'34simplydonotapplyinthecasesweareconsidering.Indeed,onemightevenregardapersonrequestingeuthanasiainthecontextofterminalillnessas showingcommendablezealinpromptlyrespondingtoadivinesummonsratherthanseekingeveryconceivablemeanstodelaysucharesponse!AsDavidHumeputit inhisclassicessay,'wheneverpainandsorrowsofarovercomemypatience,astomakemetiredoflife,ImayconcludethatIamrecalledfrommystationinthe clearestandmostexpressterms.'35IntheBible,Jobreachedthesameconclusion,andinspeechafterspeechdescribesthesymptomsofhisvariousillnessesasthe harbingersofthedeathhelongsfor:'Deathwouldbebetterthanthesesufferingsofmine.Ihavenodesiretolive.'36 12 IsitGoodforUstoSuffer? OnetraditionalChristianobjectiontoeuthanasiaisthatsufferingispartoflife,givenbyGodtoschoolourcharacterandtestourfortitude.Tooptoutofsufferingisa repudiationoftheopportunitiesthatsufferingprovidesforspiritualgrowth.WhatadyingChristianshoulddoisrathertounitehisorhersufferingswiththesufferingsof Christ,andtoofferthemuptoGod.Onthisviewthepainanddeprivationofterminalillnessaresomethingtobestoicallyacceptedaspartofthetotalexperienceof lifewhichmustbeenduredandnotrunawayfrom.Theargumentisopentotwoseriousobjections.Thefirstisthatthetheorydoesnotcorrespondwithhuman experience,sincethereisagreatdealofevidencetoshowthatsuffering,howeverbravelyborne,israrelyennobling.Thesecondisthatthetheoryoughtnottobe usedasanargumentagainsteuthanasiaunlessoneispreparedtoacceptotherimplicationsofthehypothesisandrefrainfromadministeringanalgesics.Yetvirtuallyno onetodaytakesthatline.Almosteveryoneconcernedwiththedyingacceptsthedutyandresponsibilitytodoeverythinginone'spowertominimizethediscomfortof theterminallyill.Thegoalofpalliativemedicineistosearchforabalanceofmedicationatpreciselytherightdosagetocontrolallpain.Ifsufferingweregenuinely believedtobegood,thiswouldnotbethepolicythatwasfollowed.

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13 EuthanasiaasaLettingGoofLife Oneimportantargumentforeuthanasiaisthatitisanaturalextensionofthesuccessofmodernmedicine.Itispreciselybecausemodernmedicinehasmadeitpossible forustochoosetoresistdeaththatitshouldalsobeallowedtohelpustochoosewhentoabandonthatresistance.MuchofwhatIadvocatewouldbegainedbya greaterspiritof'lettinggo'whenthereisnorealistichopeofrecovery.Butthisisnottrueofallcases. Onsomeoccasionswhenitbecomesapparentthatfurtherresistancetotheillnessisfutile,themedicalmeasurespreviouslytakentocombatthediseasemaymakethe processofdyingsignificantlyprolonged.Transplantationmightbeoneexampleofsuchameasure,andtheplacingofpeopleonlifesupportsystemstoassistbreathing ortoprovideintravenoussustenancemightbeotherexamples.Havingalreadymassivelyintervenedinthenaturalprocess,itseemswrongtoletanarbitrarydistinction betweenkillingandlettingdiepreventthepatientbeinggiventhehelpneeded. 14 CanEuthanasiabeReconciledwithourDutytoProtecttheVulnerable? Oneargumentagainsttheviewsetforthhereisthatanylegislationtopermiteuthanasiaonrequestwouldputpsychologicalpressureonagedandinfirmpeopletoask foriteventhoughitwasnottheirrealwish.AChristianshouldsupporttheviewthatthelawshouldprotectvulnerableanddependentmembersofsocietyfrombeing exposedtosuchpressurewhentheyareattheirmostvulnerable.Iacceptthatthisargumentdrawsattentiontoarealproblem.Nomatterhowcarefullypermissive legislationisdrawnitcouldbeabusedinthewayfeared.Butwhatthisobjectionfailstotakenoteofisthatthispressurewouldworkinbothdirections.Ifeuthanasia werelegalized,manyagedpeoplewhoactuallywantedtodiewouldbeputunderenormouspsychologicalpressurefromrelativesandfriendsnottoaskforeuthanasia butpatientlytoenduretheirsufferings.Atpresentofcoursethepositionisevenworseforthoseoftheterminallyillwhowanteuthanasia.Theyarenotmerelyunder pressurenottochooseit.Theysimplyhavenochoice.

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15 ThePrimacyofFreeChoice Onemuchusedargumentforeuthanasiaistheimportanceofindividualfreedomandautonomytoliveanddieinthewaysthataremostconducivetoourwellbeingas persons.Whatisneededistotrytocreateasocietywherepeoplearefreetobe,asfaraspossible,responsiblefortheirownlives,andfreetomaketheirown decisionsastowhattreatmentorhelptheywishtohave,includingtherighttochoosebetweenadequatehospicecareintheterminalstagesofillnessortheequalright toseekformedicalhelptohelpinmovingontowhatChristianshopewillbethefullerlifeoftheworldtocome. 16 TheOpportunityEuthanasiaOffersforaPrayerfulDeath Historicallyitusedtobethepracticeofallbelieverstosummonapriestwhendeathwasthoughtnear,sothatthepatientcoulddiesurroundedbyanatmosphereof prayerandworship,andinthepresenceoffamilyandfriends.Moderntechnologyhaslargelytakenawaythatoption.Manyofuswilldiealoneinahospitalbed,so attachedtointravenousdripsandothersupportsystemsthattheolderdeathbedsceneceasestobepossible.Yetifonewereallowedandassistedtofacetherealityof theinevitableitwouldbepossiblefordeathtobecomeanaffirmation.OnecouldimagineasituationwhereaChristiancouldsaygoodbyetofamilyandfriends,aHoly Communionservicecouldbecelebratedatthebeliever'sbedside,andheorshecouldbegiventhelastritesinpreparationforthejourneythroughdeathtothelife immortal.InacontextoffaiththiswouldseemamoreChristianwayofdeaththansimplyextendingthetimeofourdying. Notes Anearlierversionofthischapterwaspublishedas'ShouldChristiansacceptthevalidityofvoluntaryeuthanasia?',inStudiesinChristianEthicsfor August/September1995andappearswithpermission.
1 2

HouseofLords,ReportoftheSelectCommitteeonMedicalEthics(London,HMSO,1994). PopeJohnPaulII,CatechismoftheCatholicChurch(London,

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Chapman1994,491.
3 4 5

SelectCommitteeonMedicalEthics,24. SelectCommitteeonMedicalEthics,48.

ThegivingofmedicineisexpresslyforbiddenintheearlyChristianbookofteachingcalledtheDidache,2:2.ItmayalsobeforbiddenintheBible,inGalatians5:20, wherepharmakeiaisbanned.Thisisfrequentlytranslatedasabanonsorcery,butreferencetoanyGreekdictionarywillshowthattheword'sprimarymeaningwas theuseofanydrugs,potionsorspells.Thisemphasisisevenclearerintheuseoftherootwordpharmakon(seeforexampleLiddellandScotts'sGreekEnglish Lexiconof1892).

6 7 8 9

FordetailsseeA.D.White,AHistoryoftheWarfareofSciencewithTheology(Cambridge,Mass.,HarvardUniversityPress,1955),II,36ff. DerekHolmes,TheTriumphoftheHolySee(London,BurnsandOates,1978),82. Cf.White,WarfareofSciencewithTheology,II,36ff. Genesis3:16. White,WarfareofSciencewithTheology,II,63. White,WarfareofSciencewithTheology,II,ch.13. StThomasAquinas,SummaTheologiae,Question64,Article5.

10 11 12 13

AsEditorofEthicsontheFrontiersofHumanExistence(NewYork,Paragon,1992),andcoeditorofPerspectivesonDeathandDying(Philadelphia, Penns.,TheCharlesPress,1989).
14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30

Hamlet,I.ii.129ffIII.i.56ff. Judges17:2830. 1Samuel31:36,2Samuel1:1127. 1Maccabees6:44. 2Maccabees14:412. Matthew27:5. Matthew26:24. John10:18. John10:1016. John15:13. Acts20:1638. 2Timothy4:68. StAthanasius,OntheIncarnation,ch.30(London,Mowbray,1963)601. Ecclesiasticus41:1. Ecclesiasticus41:2. HymnsAncientandModern(London,WilliamClowes,1950),Hymn172,verse6. Matthew7:12.

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31 32 33 34 35 36

1Corinthians15:9. Colossians1:5. Luke15:1132. W.Blackstone,CommentariesontheLawsofEngland,ed.A.Ryland(London,Sweet,Pheney,Maxwell,StevensandSons,1829),IV,169ff. DavidHume,'OnSuicide',inR.Wollheim,HumeonReligion(London,Fontana,1963),259. Job7:15cf.3:201,7:37,9:21,10:1.

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8 TheCaseAgainstEuthanasia
StephenWilliams 1 Introduction Inpresentingthecaseagainsteuthanasia,therearetwoinitialquestionsthatmustbeposedandanswered.Thefirstis:onwhatbasisisthecasemadeout?Debate overeuthanasiaobviouslyinvolvesdeepandinterlockingmoralconvictions,butinwhatlookslikeasocietyofmoralstrangers,thewholebusinessofpersuasionis dauntingunlesswelimittheconstituencywearehopingtopersuade.Atthesametime,wearefacedwithquestionsofpublicpolicywhichmakesuchalimitation undesirable.Ifwetriedinthisessaytodevelopalogicofmoralreasoningandpersuasiononpublicissuesinapluralisticsociety,wewouldnevergetontothe questionofeuthanasiaitself.Soonemustbecontentatthispointsimplytodeclareone'shand.IwriteasonewhoisaChristianbyconvictionandatheologianby profession.Butthisdoesnotmeanthatwhatfollowsissimplya'Christian'ora'theological'perspectivesimpliciter.Foronething,moralreasoninginvolvesattending totheconceptualdimensionsofissuesinawaythatisnotspecificallytheologicalorreligious.Foranother,Christianityhasbeenaptlydescribedasaspiringto'true humanism'.1 Itenshrinesavisionofhumanflourishingwhichmayeitherhavesomethingincommonwithother,nonChristianvisions,orenablediscussionwith alternativeperspectivesoncommongroundatleastinprincipleandatleasttosomeextent.Ishalltrytobefaithfulbothtothepubliccontextoftheeuthanasia debateandtheconvictionsIbringtoit. Thesecondquestiongetsourdiscussionproperofftheground.Howiseuthanasiatobedefined?Questionsofdefinition

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arecapableofleadingwellintentioneddiscussionintoaswampfromwhichsubstantialconclusionswillemergeonlyslowlyandtentatively.Yetsomedefinitional controlisextremelyimportantinthecaseofcontemporarydiscussionofeuthanasia.Inoneofthebestbriefstatementsofthecaseagainsteuthanasia,DrHenk Jochemsenoutlinedwhateuthanasiaisnot.2 Itdoesnotapplyinthefollowingthreecases.Firstly,therearecaseswhentreatmentwhichismedicallyuselessiseither notinitiatedorterminated('uselessness'includesdisproportiontopossiblebenefit).Secondly,therearecaseswheretreatmentisdesignedtoalleviatepainalthoughit hastheconsequenceoftruncatinglife.Thirdly,therearecaseswherethepatientrefusesconsenttomedicaltreatment.Ofcourse,thesedefinitionallimitationsare controversial.Fromthedefinitionalpointofview,thefirstintroducesthequestionof'passive',thesecondof'indirect',euthanasia.Definitionsapart,knottyenough issuessurface,forinstanceontheproprietyofadistinctionbetweenintentionandforesight.IntakingJochemsen'sparthere,wearenotpreemptingtheoutcomeof thosediscussions.Butasaworkingdefinitionofeuthanasiaweshalladopteitherofthefollowingdefinitions:'thedeliberatebringingaboutofthedeathofahuman beingaspartofthemedicalcarebeinggiventohimorher''or'thedeathofahumanbeing...broughtaboutonpurposeaspartofthemedicalcarebeinggiventohim [sic]'.3 Contemporaryadvocatesofvoluntaryeuthanasiawillfindthatdefinitionacceptablesolongastheyarefreetoarguethatif'passive'or'indirect'euthanasiais permittedonecannotconsistentlyopposeactivevoluntaryeuthanasia.AlthoughIdonotthinkthattheargumentworks,thecaseIshallmakedoesnotdependonthat judgement.Theabovedefinitionshavetheadvantageofsettingdiscussionofeuthanasiainthecontextofmedicalpractice,whichisthecontextofitspublicdiscussion. Inhisessayon'Euthanasia:aChristianview',ProfessorR.M.HarearguedthatitwasimpossibleonChristianpremissestoruleouteuthanasiaabsolutely.4 Hetookas fundamentalinChristianethicsthegoldenrulethatwedotootherswhatwewouldhavethemdotous,whichheproceededtointerpretandtoapplytothediscussion ofeuthanasia.5 Heofferedthefamousandhistoricallyrealisticexampleofadriverslowlyburningtodeathwhiletrappedinhisvehicle,pleadingforabystandertoput himoutof

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hismisery.Hareconcludes:'Whateverprincipleweadoptabouteuthanasia,itisnotgoingtobe,ifweconsiderthisexampleseriouslyandapplyChrist'swordstoit, theprinciplethateuthanasiaisalwaysandabsolutelywrong.'6 ButHareseemstoassumethatthedeathofthelorrydriverisacaseofeuthanasiaoratleast indistinguishablefromitinanysignificantway.7 However,onemayagreethat'mercykilling'isinHare'sinstancejustified,andthatitsjustificationisrelevanttothe discussionofeuthanasiawithoutconcludingthatthiswarrantseuthanasiaaspartofmedicalpractice.Buthoweverweproceedonmattersofdefinition,itiscrucialthat wekeepinmindthemedicalcontextaswetrytosustainacaseagainsteuthanasia.Thiscasemustbeginwithremarksontwothemesimportantintheargumentfor euthanasia:autonomyandcompassion.Accordingly,weturntothese. 2 Autonomy Thedemandforautonomy,understoodroughlyastherightandpowerofselfdetermination,cannotbeengagedwithmaximaleffectivenessatthelevelofsheer argument.Itissomehowlodgedin'modern'consciousnessasanirreversibleaspiration,atleastforasignificantnumberofpeople.8 Butargumentsarecertainlyoffered forgivingautonomyitscrucialdue.Oneoftheseprovidesausefulentreatthisjuncture.ItcomesfromthepenofTristramEngelhardtinavolumethathasbeen describedas'whatmaybethefundamentalworkinbioethicsforourtime'.9 Here,Engelhardtarguedthatsinceneitherreligionnorreasondeliversuniversally acceptablemoralnorms,moralitymustbeamatterofconsent.
Consentiscardinalbecauseitisasourceofauthority.TheappealtoconsentrequiresneitheranappealtoGodnoraconvincingrationalargumentaboutthebestcourseofaction. Thetreatmentchosenforapatientisnottheauthorizedtreatmentbecauseitisthebestformoftreatmentbutbecauseitisthetreatmentchosenbythepatientandthephysician.10

Althoughtherearemanyexamples,theissueofsurrogatemotherhoodisespeciallyprominentinhisdiscussion.Whatmakes

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contractsforsurrogacymoralisthatallinvolvedgivetheirconsent.Theargumentobviouslyappliestoeuthanasiaaswell.Itisaformofappealtoautonomy. Engelhardt'sargumentderivesitsforcefromthefactthathedoesnotpretendtoofferadesirableconclusion.Rather,heproposesitasinevitable.Thereissimplyno otherwayofproceeding.However,ashiscasestands,thiswillnotdo.Incontractsforsurrogacy(asincasesofabortion,forexample),allinvolveddonotconsent. Theembryoorfoetushasnosayinthematter.Engelhardtcanscarcelyarguesuccessfullythatthefoetushasnorelevantrightsonthegroundthatitcannoteithergive orwithholdconsent.Forhewouldthenbecommitted,forexample,tothebeliefthatinfantshavenorightnottobetortured.If,outofmoralconviction,Iinsistonthe rightsofafoetusnottobeinvolvedinsurrogacyarrangementsandEngelhardtinsiststhatthefoetushasnosuchrights,thesheerconsentofthecontractingpartiesina surrogacyarrangementcannotestablishthemoralityoftheaction.Consentinsuchacasemayjustbeaprivilegedpowerandnotamoralsource.Whyshouldwe accordtoitmoralauthority? Nowitmayseemthatinfollowingtheredherringofsurrogacywehavegotcaughtinafatalcurrentthatwilltakeusintheoppositedirectionofwhatwasintended. Forvoluntaryeuthanasiaispreciselyaboutconsentingpartiesand,onthelegalplane,abouttheappositecontractualarrangement.Thecriticismmadewithregardto surrogacyfailsinthecaseofeuthanasiapreciselyforthatreason.Ofcourse,thecasesaredifferent,buttheweaknessinEngelhardt'sargumentalertsustosomething fundamentalaboutourapproachtoeuthanasia,whichiswhyitwasintroduced.Sincethemoralityofsurrogacyarrangementscannotbeestablishedintheway Engelhardtdoes,weareheadedwillynillyinthedirectionofpublic,direct,substantivediscussionofethicalissuesjustasEngelhardttriestoforceuswillynillyaway fromithoweverhopelessitmayseem,givenourlackofreligiousorrationalconsensus.Engelhardt'sargumentjustadvertisesthefactthatsocialphilosophycannot beframedasthoughsocietywerecomposedofconsentingadults.Itislargelycomposedofthosenotinapositiontoconsent.Itiswhenmoralorethicaldecisions mustbetakenontheirbehalf(ashappensjustasoftenwhenwetakethemonourownbehalf)thatweseethesocialinescapabilityofmoralpositionsnotbasedon consent.Theethicalorthe

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moralissueperseforcesitselfonus.11 Nowonemightrejointhatpublicpolicyshouldembodyethicalpositionsonmatterslikesurrogacyonlywhenweareforcedtosuchthings.Thatis,whenthereare consentingparties,weneednotofferanyjustificationoutsideconsentwiderjustificationisrequiredonlywhenwehavenooption.Butthisexhibitsahighlydubious attitudetoethicalissueswhichmayultimatelyturnouttobeperverse.Itisasthoughwearesayingthatalthoughweareforcedtomoraljustificationinsomeinstances, inotherinstances,involvingfundamentalquestionsoflife,deathandmedicalpractice,wefindnoobligationtooffermoraljustification,consentbeingsufficient. Autonomydislodgesmorality. However,letusbeclearonthepointoftheseremarks.Ofcourse,thosewhoargueforvoluntaryeuthanasiadonotappealsolelytotheautonomousrightofself determinationinthecontextofacontractualagreementbetweenpatientanddoctorfreelyundertaken.Moresubstantialargumentsareused.Yetthemoreweightwe putonsheerautonomy,evenifweadoptadifferentlinefromEngelhardt,themoreacounterpositionmustpressforajustificationoftheweightwedoput.Whyshould theprincipleofautonomycarrymoresocialweightthansomeprinciplelike,forinstance,sanctityoflife?Isautonomysomekindofuniversalethicalprinciple?Isthere anintuitiontotheeffectthat'formal'qualitiesofanaction(thatitisautonomous)deservesocialprotectionmorethan'material'moralconvictions(e.g.aboutthe sanctityoflife)?Whenceandwhythecentralityofautonomy?Thesheerfactthatsocietyiscomposedasitis,withitsvastnumberofpowerlessdependants,should alertustothepossibilitythat'autonomy'enjoysfartoomuchunchallengedprimacyinourwaysofthinking. 3 Compassion Theweightoftheargumentforeuthanasiacanbevariouslydistributed.Thedemandsofcompassionareoftentotheforefront,especiallyatpopularlevel.Allpartiesto thedebateagreethatthelawconstrainsourautonomyinsomerespects,butsomemaintainthatifitstandsinthewayofvoluntaryeuthanasia,itconsignstoillegality compassionateaction.Thecounterargument,investedwiththeweightofcenturiesoftraditionand

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medicalpractice,isthatcompassionateactionmustbelodgedwithinanorderwhereitismorallyacknowledgedthatlifeissacred.Intermsofthehistoricevolutionof ideas,thisiswheretheclashofviewsiskeenestandmostdramatic.Thosewhoadvocateeuthanasiaclaimthatasanctityoflifeprinciplethwartscompassionbyits absolutism,bestowingonbiologicallifesomeworthintrinsicallygreaterthanwhatcanbemeasuredintermsofquality,nottomentioncrushingthedemandfor autonomy.Whatarewetomakeofthis?Onepointmustbegrantedrightaway. Thosewhoopposeeuthanasiaonthegroundsofsanctityoflifeoftenappeartobesponsoringacold,inflexibleabsolutism,aruleoflawintheformofamoral principlethathaspriorityoverthepersonalandtheparticular.Itcanappearbloodlessandcompassionless.Thequestioniswhetherthisistruetotheprincipleand whetherthisappearanceisrightlyremediedbychallengingtheprinciple.Letusbeclearthatmainstreammedicalpracticehasalwaysoperatedinaccordancewith particularcasesandjudgedinaccordancewiththeirdiversepeculiaritiesonquestionsofefficacyandpointoftreatment,projectedqualityoflifeandsoforth.Sanctity oflifehasnevermeantdodgingdemandingjudgementsonwhatconstitutesextraordinaryorartificialtreatment.Emphaticallyithasnotmeantthesheerprotractionof biologicallifeastheoverridinggoalofmedicineortheproperexpressionoftheprinciple.Intellectualandmoralperplexitiesareunavoidable.Norcanoneskirtissues arisingoutofneocortical'death',thepersistentvegetativestate,includingwhetherornottherearedistinctionsbetweenthemoralbasesofmedicalandnutritive treatmentandtheconcomitantquestionofwhethertubefeedingistheoneortheotherandofwhetheritmatters.Theprincipleofthesanctityoflifedoesnot universallydictateanunambiguousresolutiontoquandariesinmedicalethics.Butitdoesentaillimitsonthenatureofmorallypermissibleactioninthetakingoflifesuch thatitcannotbetakensimplyonthegroundsthatthepatientissufferingandwantsittaken.Compassionisorderedtothealleviationofsufferingbutnottothetaking oflife. Notethateversincewetouchedondefinition,ourapproachtoeuthanasiaisimplicitlyintermsoftakingthelifeofanother.Weshouldmakethisexplicit.Itisgenerally amistaketosubsumediscussionofeuthanasiaunderthediscussionofsuicide.Suicideisdeathbyone'sownhand.Althoughthereisreferenceto

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'assistedsuicide'intheeuthanasiadebate,andalthoughthatistheproperwaytorefertocertainactionsthathavecomeupfordiscussioninthatdebate,thepleafor euthanasiaisbasicallythepleathatwegivelegalsanctiontothemedicalprofessiontotakethelifeofpatientsundercertainspecifiedconditions.Thatisnottosaythat discussionofsuicideisalwaysandaltogetherirrelevant,whichiswhyIreferredto'general'mistakenness.Itcanpresentmoralissueshighlyrelevanttothequestionof euthanasia.Buteuthanasiaisnotacaseofsuicide.12 Thereareatleastthreedangersincuttingoffcompassionfromalimitingsubstantiveprincipleofthesanctityoflife. (1)Itbecomesdifficulttowardoffthedemandfornonvoluntaryeuthanasia.Atpresent,thepublicargumentisovervoluntary,notnonvoluntary,euthanasia. Suppose,however,thatcompassionisnotbornealongbyarelevantprincipleofthesanctityoflife,sothatlifeismeasuredbyitsperceivedqualityandquality becomesameasureofthevalueofhumanlife.Ifcompassionateactioninsuchcasesallowseuthanasiaforthosewhorequestit,whyshoulditnotforthosewhodo not?Itistruethatinfantsandthegravelymentallyretardedcannotconsenttoeuthanasia.Yetwhyshouldthisbetotheirdisadvantage?Whyshouldtheirinabilityto expresspreferenceshutthemofffromtherighttobesubjectsofcompassionatenonvoluntaryeuthanasia?Isitcompassionatetodenythemanysuchright13 (2)Itrevolutionizesthephilosophyandpracticeofmedicinewithdeleteriouseffects.Thedoctorbecomesprofessionallyneutralinthematteroflifeanddeath.Heror hisskillsaredirectedtotheclinicalreliefofsufferingbutnolongerregulatedbyprinciplesintrinsictotheprofession,accordingtowhichpatientanddoctoroperate withinabroadermoralframeworkinsteadofanarrowerconsensualframework.Asaresult,anotherroutetononvoluntaryeuthanasiaisopened.Becauseeuthanasia isnolongerprofessionallyalientomedicalpractice,theelderlyorchronicallyillmaybegintofearthatrelativesorfriendswillpersuadedoctorstoperformeuthanasia. Neitherprofessionalpracticenorpersonalcompassionaregroundedinasufficientprincipleofthesanctityoflifethatreassuresthedisadvantagedthattheyhave nothingtofear.Ifonewantsevidencethattheirfearsarefullyjustified,theexperienceoftheNetherlandsistelling.14

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(3)Compassionitself,consideredunderitsemotionalaspect,maydryup.InhisprefacetoTheGenealogyofMorals,writtenin1887,Nietzschewrote:'Ibeganto understandthattheconstantlyspreadingethicsofpity,whichhadtaintedanddebilitatedeventhephilosophers,wasthemostsinistersymptomofoursinisterEuropean civilization...'15HewasreactingagainstSchopenhauerinteralios.SchopenhauerofferedarelevantstatementofhisownpositionintheessayOntheBasi'sof Morality,inwhichhetracedmoralactionbacktoafundamentalsympathy,adeepcompassion,whichunitesuswithourfellowhumansindistress.16Asfirmlyashe rejectedabasisformoralityindivinecommand,herejecteditinwhathetooktobeitssecularcounterpart,Kant'srationallegislativewill.Nietzsche'sphilosophyalerts ustoatleasttwodifficultiesinSchopenhauer'sargument.Thefirstisthatifcompassiondriesup,thereisnobasisformorality.ThesecondisthatSchopenhauergives usnoreasonforbelievingthatitcannotdryup.17. Nietzschehimselflookedforwardtoasocietywhereonehadcompletemorallibertytoexerciseortowithholdmercy,whereonewasnotsubjecttocompassionate feelinginducedagainstone'swillbythesufferingofanother.Itisarguablethathewasconsistentinembracingsuchaprospectifmoralityisapurelycreativeenterprise. Somoralitytendstobe,ifwegiveprideofplacetoautonomy.'...Thetermsautonomousandmoralaremutuallyexclusive...18IncontemporarypostChristian society,onefearsthatNietzschehasputhisfingeronit.Butwithourreferencetoautonomy,wehavecomefullcircle.AndwithourreferencetoChristianitywearrive atthematterofspecificallyreligiousortheologicalprinciples. 4 InChristianPerspective Nothingintheargumentsofaramountstoanythinglikeaconclusivecaseagainsteuthanasia.Itmayappearthatatmostwehaveindicateditsperils,butitsperilous possibilitiesdonotruleoutthemoralityofanaction,particularlyifalternativesarethemselvesjudgedperilousorotherwiseunsatisfactory.Thefactisthat,evenifinour moralargumentswedwellonconsequences,becausethereisnoconsensusonprinciples,wedonotnecessarilygetveryfar.Consequencescanbevariouslygauged, and

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disagreementcanstillexistonwhetherornotcertainconsequencesaredesirable.Ofcourse,asfarasthisgoes,thecaseforeuthanasiaisinnobettershapethanthe caseagainst.Ihavejustsoughttoindicatetheparticulardifficultieswithwhichitisconfronted,adducingreasonsbothforchallengingtheprimacyofautonomyandfor warningagainsttheseveranceofcompassionfromarelevantprincipleofthesanctityoflife.InChristianorwidertheisticperspective,autonomydoesnothavethe exaltedstatusitoftenpossessesinsecularthought.Itisquestionableifithaslogicallyanyplaceatallwithinatheisticviewoflife,asChristianandatheistmightalike maintain.19 Christianitydoes,however,speakoffreedom.Thedignityoffreedomdoesnotlieinfreedompersebutintheusetowhichitcanbeput.Freedomisvaluable becauseitcanbeinstrumentalingoodness.Itmaybethathumansbothhavesomeknowledgeofgoodandevilandhavesomefreedomtodogoodorevil,butboth theknowledge,suchasitis,andthefreedom,suchasitis,signifysomethinglacking,andnotjustsomethingdistinguishing,abouthumanbeing.Theypresupposethe hiatusbetweentheconditionsofhumanexistenceandthesupremedignityofhumanbeing,whichistoknowGodandtodogoodastheconsumingpurposeofhuman life.AsBonhoefferarguedwithgreatforce,inChristianperspective,humansaredesignedtoknowandtoenjoyGodandgoodnessandeachotherinthatlightthe knowledgeofgoodandevil,andthecapacityforgoodaswellasevil,isasignofhumantragedymorethanhumandignity.20Itmaybelongtohumanexistenceto possessameasureoffreedominordertorealizethatknowledgeandexertthatcapacity.ButGodandthegoodcanalsoberejected,andonedoesnotcelebratethe capacitytodothat. InChristian,asinwidertheistic,perspective,discussionofhumanflourishing,freedomormoralityisstymiedunlessreferenceismadetothepurposeofhumanlife beforeGod.ThelogicofChristianbeliefcanscarcelyleadelsewhere.Certainly,talkofpurposecanbealltooglibandsuspiciouslyremovedfromhumanrealities wheninvokedinthecontextofsufferingandeuthanasia.Atthesametime,toeliminatetalkofitisimpossible.Christiansarepledgedtobearwitnesstothe transcendentrealityofGodascreatorandredeemerofhumanlifetotheintrinsicworthofhumanbeingpreciselybecauseitisgenericallyconsti

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tutedintheimageofGodtotherealityofarelationshipwithGodwhichindividuateseachonegenericallyinthedivineimagetotheresponsibilitytoloveone's neighbourasoneselfeventothepointwheretheconsequencesofwhatIdo,asfarasmyneighbourisconcerned,mattersmorethanthecomfortofwhatIdo,asfar asIamconcerned.21Thisputsitspeculiarcomplexionuponthequestionofeuthanasia.Therighttotakeone'sownoranother'slifeinscriptureandaccordingto Christiantraditionisstrictlydemarcatedpreciselyasasignofthetranscendentvalueofhumanlife.Ithasusuallybeendemarcationratherthanabsoluteprohibition:the medievalvirginwhotookherownliferatherthansuccumbtoviolation,orthemagistratewhoorderedadefensiveandjustwar,figureinthetraditionofpermissible takingoflife.Butabroaderrighteithertosuicideortomurdercannotbederivedfromthisandneithercanpermissionforeuthanasiaaspartofmedicalpracticeinthe twentiethcentury. Tospeakoftranscendentdivinepurposeiscertainlynottoaffirmthatpain,sufferingandindignityarepurposefulinthesensethattheyarealwaystoruntheircoursein thenameofthedivinewill.ThefactthatthegreatestsinglecontributortotheNewTestamentliterature(Luke)wasaphysiciansendsanimportantsignalinthat respect.22Butthatpeopleastheyarechronicallyill,depressed,lonely,undignified,mentallyincapable,deformed,inpainthatthesearelovedastheyare,just becausetheyare,byaGodthattheyarehumanlydesignedtoknowandtolovethiscannotbeaffirmedbyeuthanasia.Itcanbystrenuousactiontorelievepainand thecaredevelopedinthetraditionofhospices.23
Whyislightgiventothoseinmisery,andlifetothebitterofsoul,tothosewholongfordeaththatdoesnotcome,whosearchforitmorethanforhiddentreasure,whoarefilled withgladnessandrejoicewhentheyreachthegrave?Whyislifegiventoamanwhosewayishidden,whomGodhashedgedin?

ThesearethewordsofJob,foundinthecanonicaltextofJewsandChristians(3:203).Inthestory,theLordGodscarcelyrebukesorchastisesJobforsentiments sharedbymanywhorequesteuthanasia.Hisreligiouscomfortersaretheoneswhoreceivethestick.ButGoddoespressJobtowardsarealization

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andaconfession.IfthereisGodandifGodiscreator,thesearchforpurelyimmanentpurposesinhumanlife,theattempttogaugeitssignificancebyitstemporal course,insicknessandinhealth,isalreadyamistake.TheresponseoffaithofferedbyPaulinhislettertotheRomanswas:'Fornoneofuslivestohimselfaloneand noneofusdiestohimselfalone.Ifwelive,welivetotheLordandifwedie,wedietotheLord.So,whetherweliveordie,webelongtotheLord'(14:78). Secularadvocatesofeuthanasiaarerighttodrawourattentiontothehumanitariansummonstoalleviatesuffering.Religiousadvocatesofeuthanasiaarerighttodraw ourattentiontothefactthatdeathprecedesthefulfilmentofhoperatherthanprovingitsfinaldestruction.Butinasocietywherethehumanitarianisnotguaranteedto survive,andinatheologywheretheglobalconsequencesofactionhelptodeterminethenatureofhumandecisionbeforeGod,weshouldnotentertaineuthanasia. Noristhisbecauseofpossible,passing,uncertain,changingtemporalorsocialcircumstance.Itisbecausehumansarenotthe'unlimitedproprietorsoftheirown persons'.24Iftheyessayaunilateraldeclarationofindependencetheyriskpropellingsocietytowardsaconsequentialcontemptforlife.25Wehadbetternotdiscover whatrawhumanityismadeof.26 Notes
1 2 3

AphrasepopularizedbytheFrenchphilosopher,JacquesMaritain,TrueHumanism(London,Bles,1938). H.Jochemsen,'AChristianevaluationof,andalternativeto,euthanasia',availableviatheProf.dr.G.A.LindeboomInstitute,Ede,Netherlands.

ThefirstformulationisthatofDavidAtkinson,PastoralEthicsinMedicalPractice(TunbridgeWells,Monarch,1989),221thesecondisfromEuthanasiaand ClinicalPractice(London,LinacreCentre,1982),2.
4

InhisEssaysonReligionandEducation(Oxford,Clarendon,1992).Hisessayon'Medicalethics:canthemoralphilosopherhelp?'givesagoodindicationofhis method,inR.M.Hare,EssaysonBioethics(Oxford,Clarendon,1993).
5

Ontheprescriptionsofthegoldenrule,Hareremarks:'Icanthinkofnomoralquestiononwhichtheyhaveamoredirectbearingthan

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thequestionofeuthanasia...'(op.cit.,72).
6 7

Op.cit.,75.

Aclosereadingofthesignificant'Anglicancontributiontothedebateoneuthanasia',titledOnDyingWell(London,ChurchHouse,1975),willrevealthevacillation betweenthinkingoftheburninglorrysituationasoneofeuthanasiaoronethathelpstodetermineourviewsofeuthanasia.
8 9

DonCupitt,TakingLeaveofGod(London,SCM,1980),ch.1.

1takethiscommendationofMarxWartofskyfromthecoverofT.Engelhardt,BioethicsandSecularHumanism:TheSearchforaCommonMorality(London, SCM/Philadelphia,Trinity,1991).
10 11 12

Op.cit.,126ff. Iamassumingatypicalmoderndemocraticcontextwhereneithermereappealstotraditionnortotalitarianresolutionsarejudgedacceptable.

AnimportantreligiousangleonsuicideiscapturedbythewordsofMadamedeStal:'Thoughtherebemanycrimesofadeeperdyethansuicide,thereisnoother bywhichmenappearsoformallytorenouncetheprotectionofGod',quotedbyW.E.H.Lecky,AHistoryofEuropeanMorals(London,1869),vol.ii,p.47.In lightofourlaterreferencetoBonhoeffer,wenotethesummarybutquitepowerfuldiscussionofsuicideandthetakingoflifeinEthics(NewYork,Macmillan,1965), p.15573.

13

Weshouldhavetoexploreheretheconnectionsbetweenargumentsforeuthanasiaandabortion.Forastatementofthefactthatidentityof'ideologicalbackground' makeseasytheslidefromvoluntarytononvoluntary(hecallsit'involuntary')euthanasia,seeJochemsen,op.cit.,especiallypp.57).
14 15 16 17

SeeJohnKeown,'ThelawandpracticeofeuthanasiaintheNetherlands',EthicsandMedicine,8,3(1992),3448. OntheGenealogyofMorals(NewYork,Vintage,1969).Nietzsche'sreferencetoBuddhisminparticularcanbegeneralized. OntheBasisofMorality(NewYork,BobbsMerrill,1965).

IhavesoughttodiscussNietzscheandsomefurtherobjectionsthatmightbemadetoconnectingcompassionwithasanctityoflifeprinciplein'Bioethicsinthe shadowofNietzsche',inN.deCameron,J.KilnerandD.Scheidermeyer(eds.),BioethicsandtheFutureofMedicine(Carlisle,Paternoster,1995).
18 19

Nietzsche,op.cit.,2.11.

Thequestionwhethertheismlogicallyaffordsspaceforautonomycandivideparticipantsacrossandnotalongthetheistatheistdivide.Somerelevantprobingtakes placeinJohnMacken'swork,TheAutonomyThemeinthe'ChurchDogmatics':KarlBarthandhisCritics

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(Cambridge,CUP,1990).
20 21

Op.cit.,part1.

Discussionofthesocialconsequencesofsuicidearerelevanthere.Ithasbeenregardedassociallyofdeepestsignificanceintermsofinducingguilt,griefand suicideexpectancy.Humewasveryfaroffthemarkwhen,inhisdefenceofsuicide,hesaid:'Aman,whoretiresfromlife,doesnoharmtosociety:heonlyceasesto dogoodwhich,ifitisaninjury,isofthelowestkind...','Ofsuicide',inA.MacIntyre(ed.),Hume'sEthicalWritings(NewYork,Macmillan,1965).Seethe fallaciousargumentofthewholeessay,whichconcludesthatifhumanactiontopreservelifedoesnotusurpdivineprerogative,neitherdoeshumanactiontotakeit.

22 23

1assumetheLucanauthorshipoftheActsoftheApostles.

InthisessayIamnotgivingitsdueimportancetohospicework.ThetestofanauthenticChristianmoralstanceiswhatisdoneaboutasituationandnotjusthowit ismorallyregarded.Hospicesareobviouslynotappropriateforallthecaseswhereeuthanasiaisrequested,buttheunderlyingethicofhumanlifeanddignityisapt.
24 25

TheoriginatorofthisphraseisthedeistElihuPalmer:seePeterGay,Deism:AnAnthology(NewYork,VanNostrand,1968),189.

Nietzscheexplicitlyarrivesatthispointinregardtophysicians'attitudestopatientssee'Thetwilightoftheidols',inTheTwilightoftheIdols/TheAntichrist (Harmondsworth,Penguin,1990),98ff.Nietzsche'sconclusionsarecertainlyrepugnanttomanyinfavourofeuthanasia,andIamcertainlynotimputingNietzschean attitudestothem.Butbeforeheisdismissed,thelogicofthetwoprecedingworks,BeyondGoodandEvilandTheGenealogyofMorals,mustbestudiedand successfullyrefuted.

26

Itmaybedifficulttopersuadethatoneisnotscaremongeringatthispoint.TheDutchsituationneedsscrutinyhere.Ironicallyandsadly,Dutchphysicianswere admirablyresistanttoNazipressureforeuthanasia.WhetherornotinvocationoftheNazisisscaremongeringIcannotdecidehere,butseethecelebratedessayon 'Medicalscienceunderdictatorship'byDrLeoAlexander,oftenreprinted,e.g.inEthicsandMedicine,3,2(1987),whereitshouldbereadalongsidethepreceding essaybyDrEverettKoop,'Decisionsattheendoflife'.

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PARTII THEQUESTFORMEANINGANDPURPOSEINDEATH

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9 TheNearDeathExperience
PeterandElizabethFenwick 1 Introduction Concernaboutourimmortalityisanalmostuniversalhumanpreoccupation.Mostcultureshaveembracedthenotionthatthereissomethingbeyonddeath,beyondthe blacknessofthegrave.ThoseofuswhoembracetheWesternJudaeoChristiancultureabsorbfromanearlyagetheideasthatvirtuenowhasitsownrewardlater, thattheuniverseisessentiallymoralandthatthereareabsolutehumanvalues. Increasingly,sciencepresentsuswithapictureofamuchmoremechanicaluniverseinwhichthereisnoabsolutemoralityandhumanshavenopurposeandno personalresponsibilityexcepttotheircultureandbiology.Wenolongerliveinanagewhenfaithissufficientwedemanddata,andwearedrivenbydata.Thenear deathexperienceholdsafascinationbecauseitseemstoprovidejustsuchdatadatathatilluminateourcurrentideasoflifeafterdeath,includingheavenandhell,and perhapsevenofferapromissorynotethattheremaybesomefoundationforhumanhopesofimmortality. Thereisnothingparticularlynewaboutthenotionthatonecandieandlivetotellthetale.Writtendescriptionsofsimilarexperiencesaboundinmythsandlegends goingbackwellover2,000years.Itislikelythatforaslongashumanbeingshavebeenawareofthecertaintyofdeaththeyhavecontemplatedthepossibilityof survivalandhavewonderedwhathappensnext.Themostancientburialsitescontainartefactsthatsuggestbeliefinthesurvivalofsomeaspectofthehumanbeing afterbodilydeath.Plato(427347BC)attheendoftheRepublictellsthestoryofasoldier,Er,whowasthoughttohavediedonthefield

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ofbattle.Herevivedonhisfuneralpyreanddescribedajourneyoutofhisbodytoaplaceofjudgement,wheresoulsweresenttoheavenortoaplaceof punishment,accordingtothelifetheyhadlivedonearth.Beforereincarnationtheyweresentacrossariver,wheretheirexperienceofheavenwaswipedfromtheir memory.However,Erhimselfwassentbacktotellotherswhathehadseen. Forthescientist,theneardeathexperience(NDE)isintriguingformanyreasons.Oneisthatitisverycommon,andanotherthatresearchsuggestsitiscrosscultural. TheresultsofoneNationalOpinionPollinAmericasuggestthatmorethanonemillionAmericanshave'seenthelight'.Couldanyexperiencethatissocommonnot havesomeinfluenceonthewayweviewlifeanddeath?Indeed,itmightevenbetheverysourceofourideasofanafterlife.ManybelievethattheNDEgivesus glimpsesofheaven(orhell).Itis,however,justasreasonabletoassumethatitistheNDEitselfthatmayhaveshapedourideasaboutheavenandhell. NotwoNDEsareidentical.However,certaincommonfeaturesoccurrepeatedly.Iwillherebrieflyoutlinethese: (1)PositiveEmotionalFeelings Overwhelmingfeelingsofpeace,joyandblissarethefirstandmostmemorablepartoftheNDEformanyexperiencers.Anyfeelingsofpainthattheearthlybodymay havebeenexperiencingdropaway. (2)OutofBodyExperiences Theseusuallyoccuratthebeginningoftheexperience.Thepersonfeelsasthoughheorsheisslowlyrisingoutofthebody,andcanlookdownonitfromsome objectivevantagepoint,whilefloatingweightlessaboveit. (3)TheDarkTunnel Thepersonmayenterdarkness,usuallypassingrapidlythroughadarktunnelwithnophysicaleffort.Experiencersreportseeing,attheendofthetunnel,apinpointof lightthatgrowslargerasitisapproached.Some,ontheotherhand,describeatunneloflight,notdarkness. (4)TheLight Experiencersnearlyalwaysdescribethelightattheendofthetunnelaswhiteorgoldenbrilliant,butnotdazzling.Often,itseemstoactasamagnet,drawingthe persontowardsit,andithasaqualityofwarmth. (5)TheBeingofLight Atsomepointthepersonmaymeeta

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'being'oflight.SomemaydescribethisasanobviouslyreligiousfiguresuchasJesus.Otherssimplydescribeitasa'presence'thattheyfeeltobeGodorGodlike. Thisisnearlyalwaysanintenselyemotionalexperience.Experiencersoftensaytheycannotfindwordstodescribetheirfeelings. (6)TheBarrier Sometimesthepersonsensesabarrierbetweenhimorherselfandthelight.Itmaybeaphysicalbarrier,i.e.aperson,agateorfence.Atothertimes,itissimplya feelingthatthepersonknowsthisisapointbeyondwhichonecannotpass. (7)TheLandscape Experiencersoftensaythattheyhavevisitedanothercountry,usuallyanidyllicpastoralscene,brilliantlycoloured,filledwithlight,orthattheyhaveglimpsedsucha placebeyondthebarrier. (8)MeetingFriendsandRelatives Occasionallyexperiencersmeetotherpeople,usuallydeadfriendsorrelativesor,morerarely,peoplewhoarestillaliveandsometimesstrangers. (9)TheLifeReview Atsomepointintheexperiencethepersonmayseeeventsfromhislifeflashbeforehim.Afewexperiencerssaytheyhavefelttheyarebeingweighedup, experiencingasortofdayofjudgementinwhichtheirpastactionsarereviewed.Someexperiencealifepreviewthatis,eventsareunfoldedtothemthataretotake placeinthefuture,andsometimestheyaretoldtherearetasksaheadofthemthattheymustgobacktocomplete. (10)ThePointofDecision Often,althoughexperiencerswanttostay,theyrealizethatitis'nottheirtimetogo'.Theymaymakethedecisiontogobackthemselves,usuallybecausetheyrealize thattheirfamiliesstillneedthem.Sometimesthedecisionismadeforthem,andtheyaresentbackeitherbythe'beingoflight',orbythefriendsorrelativestheyhave met,often,too,withasensethattheyhaveunfinishedbusinesstocompletebeforetheyarefinallyallowedto'crossthebarrier'. (11)TheReturn Sometimesthepersonsimplyfindshimorherselfbackinhisorherbody.Sometimestheexperiencerisawareof'snappingback'intothebody. (12)TheAftermath ExperiencersusuallyvividlyremembertheNDEforyears,oftenforawholelifetime.Experiencersreportthattheyreturnedchangedinsomeway,often,

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thoughnotalways,permanently.Subsequentlossoffearofdeathiscommon.Somebelievethattheyhavebeengivenpsychicpowerssuchasprecognitionorthegift ofhealing,followingtheexperience. Itisunderstandablethatweshouldwanttoexaminesuchexperiencesindetailandsubjectthemtoscientificscrutiny.Itisalsoimportanttobearinmindthatthe assumptionswhichunderpinourcurrentsciencecontainlimitationswhichmaypreventsciencefromobtainingameaningfulexplanationofsuchsubjectiveexperiences. Ourcurrentscienceisbasedontheconceptofanindependentexternalworldwhichiscommontoeachobserver,andaconsensusviewallowsustosetupandtest hypotheseswhichcanbeverifiedbetweenindependentobservers.Whatisbecomingclearfromneuroscience,however,isthattheviewwetakeofanindependent externalworldisapsychologicalconstructandcontainsonlysubjectiveexperience.Althoughitisreasonableinmostsituationstoconsiderthissubjectiveworldas objective,thisviewbreaksdownwhenoneisconsideringonlypsychologicalexperienceswhichappeartohavenofoundationinacommonexternalreality.Thusthe NDEsetsachallengetoourscientificassumptionsandtotheexplanationsthatwecanputforwardaboutourownsubjectiveexperiences. Ourcurrentscientificmodelarguesfornovaliditytosubjectiveexperienceexceptthatitisbasedinbrainstructure.Althoughthisisareasonablescientificviewtotake, itdoesmeanthatultimatelytheonlyexplanationswecangiveoftheNDEmustbedescriptionsofbrainfunction.Atthepresenttime,neuroscienceisprogressing extremelyfast.Ontheonehand,withmoleculargeneticsthebasicstructuresresponsiblefortransmissionbetweennervecellsaremuchbetterunderstood,andshowa pictureofenormouscomplexity.Atahigherleveloforganization,theactionofgroupsofcellsinsystemsshowsthataperson'sexperienceisnotaunitybutis composedofnumerousindependentfunctions,anyoneofwhichmaybelost,andallofwhichhavetobeintegratedinsomewaytogiveatransientviewofthepresent moment.Theinitiationofaction,whatwecouldlooselytermfreewill,hasacentrewithinthebrain,asdoourfeelingsofguilt,ourappreciationofmusicandthefiner sensitivityofbeingabletounderstandotherpeople'sminds.

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Thusneuroscienceisarguingforahighlystructuredandlocalizedbrainwiththepossibilityofapotentialexplanationforallwethinkofasthehigherqualitiesofman. Ontheotherhand,thereisaccumulatingevidencethatmindmaybeabletoactdirectlyonmatter,thatis,themindisnotconfinedwithintheskull.Resultsfromthe metaanalysesoftheGanzfeldexperimentsandfromBobJohn'sexperimentsatPrincetonprovidepowerfulscientificevidenceforanactionofmindatadistance. Thesetwotrends,theincreasingabilityofneurosciencetoexplainmindontheonehand,andtheincreasingevidencethatmindactsbeyondtheskullontheother, suggestthatanewtheoryofmindisrequired.Theformofthisnewtheoryislikelytofollowthatofthenewphysicsinthatmindismorelikelytobeseenasactingasa fieldratherthanjustasasimpledistillationofneuronalfiringpatternslockedwithinaneuronalnetwork. 2 PopulationSurveyed TheremainderofthischapterwillbeadescriptiveanalysisoffirsthandaccountsfrompeoplewhowrotetousortoDavidLorimer(ChairoftheInternational AssociationofNearDeathStudies,UK).PeoplewrotefromallareasofEngland,thoughthegreatestnumberwasfromthesoutheast.Fewerresponseswere forthcomingfromWales,fewerstillfromScotlandandonlytwofromIreland. Frommorethan1,000accounts,weselected500thatrepresentedprototypicalNDEs.Weexcludedexperiencesthatseemedduetodreams,fantasyorrecreational druguse,aswellasthosethatseemedtoariseinapathologicalsettingincorrespondentsinpsychologicalturmoil.Wealsoexcludedthoseinwhichdisordersofbrain functionsuchasepilepsywerepresent,aswellasthosewheretheexperiencedescribedwasclearlydirectlydependentonbrainpathologyandthereforenotinany senserelatedtobeingneardeatheitherphysicallyorpsychologically. WedidnotexcludethoseprototypicalNDEsthatoccurredwhenthepersonwastechnicallynot'neardeath'.Thisallowedustotesthypothesesthatsuggestthatthere aredifferencesbetweentheexperiencesofthosewhoweretrulyneardeathandthosewhowerenot.1 Wesenttheselected500respondentsaquestionnairethatwe

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haddevised.Inconstructingthequestionnairewetookintoaccountpreviousquestionnaires.2 However,wefeltthatthefieldofNDEshadprogressedtoapoint whereweneededtoaskdifferentquestions.Thequestionnaireaimedtoobtain,inastandardizedformat,asmuchdetailaspossibleabouttheNDE,theindividual whoexperiencedit,andtheeffectthattheexperiencehadontheindividual'slife. Wereceivedmorethan360replies.Thisanalysis,however,comprisesonlythefirst344.Ofthese,78percentwerewomen,22percentmen59percentmarried, 15percentdivorced,and10percentsingle80percentwereeighteenyearsofageorover(adults)atthetimeoftheexperience9percentweretenoryounger51 percentdescribedthemselvesasChurchofEngland,12percentRomanCatholic19percentasbelongingtootherChristiandenominations,and1percentJewish 8percentdescribedthemselvesasagnostic,and2percentasatheist.Inpopulationsurveys,approximately25percentofpeoplewillclaimtobeeitheratheistor agnostic.Therefore,the10percentwefoundissurprisinglysmall.Thisfindingcouldberelatedtothewaywewordedthequestion.Itspecified'religion'anditis possiblethatsomerespondentsmayhaveansweredgivingthereligioninwhichtheywereraisedratherthantheirpresentbelief.Fiftysixpercentsaidthey'didnotgo toworship'(werenotchurchgoers).However,16percentsaidtheywenttochurcheveryweek.Thirtyninepercentsaidreligionwasimportanttothem,41percent thatitwasn't,while20percentrepliedthatperhapsitwas. Wespecifiedninecategoriesofoccupation.ThesecategoriesareavariationoftheRegistrarGeneral'sclassification.Wewereinterestedinoccupationbecauseother surveyshadclearlyindicatedarelationshipbetweeneducationandfrequencyofNDEs.Twentyninepercentofthesamplewereprofessionalorequivalent,17per centskilledorsemiskilled,25percenthousewivesorhousehusbands,and23percentretired.Only3percentwerestudentsand2percentwereunemployed. AswellasaskingabouttheNDEitself,wetried,asfaraspossible,todiscoverthecircumstancesinwhichitoccurred,andthestateofconsciousnessoftheperson whentheexperiencebegan.Weasked:'Whatwasyourstateofconsciousnessattheoutsetoftheexperience?'Onethirdreportedthattheywereawake,13per

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centasleep14percentunderanaesthesia,17percentunconscious,20percentsemiconscious,and3percentsaidthattheywereconfused. Concerningthecircumstancesinwhichtheexperienceoccurred,10percentreportedthatitoccurredastheresultofanaccident,9percentduringheartattack,15 percentduringchildbirth.Thelargestgroup,23percent,saiditaroseduringillness.Theseillnessesvariedwidely,wereusuallyseverebutnotalwayslifethreatening. Another21percentdescribedtheexperienceasoccurringduringanoperation,and20percentduring'othercircumstances'notincludedabove.Inonly2percent didtheexperienceariseduringasuicideattempt.Itisimportanttonotethatonly37percentwerereceivingdrugsatthetimeoftheexperience,whichmeansthat nearlytwothirdsweredrugfree. WealsowantedtoknowhowmanypeopleknewaboutNDEsbeforetheirexperience.Thisisimportant,because,ifanexperiencerhadpriorknowledgeofNDE,it wouldbereasonabletosupposethatthisknowledgecouldtosomeextentinfluencetheexperience.Wefoundthatonlyatinyproportion,2percent,saidtheyfirst becameawareofNDEsbeforetheirownexperience.Thevastmajorityclaimedtoknownothingaboutthephenomenaandonlybecameawaremuchlaterwhenthey happenedonaccountsofothers'experiences. Most,79percent,hadoneNDEonly,thoughasurprisingnumber,12percent,hadtwo,andafew,9percent,saidtheyhadthreeormore.ClearlytheNDEdoes notconferlifelongimmunity.Evidencesuggeststhattheremayevenbean'NDEpronepersonality',orthatoneexperiencemay,insomeway,facilitateanother. RingandRosinghavesuggestedthatNDEsaremostlikelytooccurinpersonswhohadadifficultbirthandwere,therefore,possiblymildlybraindamaged,orin thosewhohadaparticularlyunhappychildhood.3 Wetestedtheseideasandfound,thatinoursamplethesedidnotholdtrue.Only27percentreportedhavinghad adifficultorprolongedbirth,andonly17percentsaidtheirchildhoodhadbeenunhappy82percentdescribedtheirchildhoodasaverageoraboveaverage happiness. HellishNDEsarerare.Onlythreepersonsinoursampledescribedtheirexperiencesas'hellish'.Otherinvestigatorshavefoundnohellishexperiences.4 Afewhave collectedafew

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accountsofjourneystohellandback,5 butoverwhelminglyitseemsthatglimpsesofheavenareeasiertocomebyintheNDEthanglimpsesofhell.Isthisbecause, wherelifeafterdeathisconcerned,weareallpastmastersatgivingourselvesthebenefitofthedoubt?AGallupsurveycertainlyfoundthatmostpeople,evenifthey believedinhell,ratedtheirpersonalchanceofendingupthereas'small'. Sabomhassuggestedthatthereasonthatsofewhellishexperienceshavebeendescribedisthattheyarequicklyforgotten.6 Ourownimpressionisthatthosewho hadthesebadexperienceswerestronglyaffectedbythem,butmuchmorereluctanttotalkaboutthemthanpeoplewhohadpositiveexperiences.'Ihadahelltype experiencetwentyyearsago',saidonewoman,'andithashauntedmeeversince!Sherefusedtogiveanymoredetails.Whennegativeexperiencesdooccur,they seemtobejustaspowerfulandjustasmemorableaspositiveones.However,itisalsopossiblethatafewpeoplemanagetosuppressnegativeexperiencesandso simplydonotrememberthem. 3 ContentoftheExperiences Wewereinterestedinthecontentoftheexperiencesandextractedfromtheliteraturethosefeatureswefeltweremostimportant.Inanswertothequestion,'Didyou experienceanydarkness?',66percentortwothirdshadnotexperienceddarkness.Thisisasurprisingfindinginviewofthenumbersofexperienceswhichdescribe catastrophicbraindysfunctionwhenunconsciousnessanddarknesswouldbealmostguaranteed.Thisfindingwillcertainlyrequirefurtherinvestigationinalaterstudy. Inanswertothequestion,'Didyouexperienceanylight?',72percentsaidtheyhad.Justunderhalfofthegroup,49percent,experienceda'tunnel'.Oneexplanation ofthetunnelandlightphenomenamaintainsthatrandomfiringoftheneuronesinthevisualcortexprecipitatedbycerebralanoxialeadstotheimpressionoflight.As thisareaexpands,theimpressionoflightincreases,andthustheexperiencerhasthefeelingthatheorsheisapproachingthelight,whichsubjectivelygivesthe impressionofatunnel.Wecertainlyfoundarelationshipbetweenthetunnelandthelight.7 Bothlightandtunnelwereseenby133peopleonlytwentyeightpeople hadatunnelexperiencewithoutlight.

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However,ninetythreepeopledidseethelight,butnotunnel(Chi17.5<0). Mostneardeathexperiencersdescribethecolourofthelight(usuallybutnotalwaysseenattheendofatunnel)asbeingeitherbrilliantwhiteorgolden.Fewprevious authorshavegiventhefrequencywithwhichexperiencerssawothercolours.Weasked,'Ifyousawalight,whatcolourwasit?'Ofthesample,56percentdescribed itasbrilliantwhite,21percentasgolden.Othercoloursdescribedwerered(2percent),orange(3percent),yellow(6percent),green(2percent),blue(3per cent).Another7percentdescribedthelightashavingnocolour,butdidnotassociatethiswithwhite.Analysisofthedatasuggeststhatmanypeopledescribethelight ashavingaqualityofwarmth,anditisperhapssignificantthatonly5percentoftherespondentsdescribethecolourofthelightasbeingatthecolder(blue)endofthe spectrum. Weaskediftheyhadexperiencedalandscape,and76percentsaidtheyhad.Thedescriptionssuggestthatthelandscapeisusuallyhighlycolouredandidealized,and resemblesanEnglishgardenorpastoralsceneinsummer.Experiencersdescribednowintergardens,nodyingplants,nomoorsormountains.Pathsledthroughthe gardensofbrightlycolouredflowers.Someexperiencersrecognizedandnamedtheflowersandcommentedontheluxuriantblooms.
Iwasjustinawonderfulpeaceandwellnessinabeautifullandscapesettingofgrass,lawnsandtreesandbrilliantlight... ...agardenwheresurelybeautyhadfounditsname.Thiswasanoldfashioned,typicallyEnglishgardenwithalushgreenvelvetlawn,boundedbydeepcurvingborders brimmingwithflowers,eachflowernestlingwithinitsfamilygroup,eachgroupproclaimingitspresencewithariotofcolourandfragranceasifblessedbyamorningdew.The entrancetothegardenwasmarkedbyatrellisofhoneysucklesoladenthatyouhadtocrouchdowntopassbeneathwhileattheotherendarusticgardengateledtotheoutside. ItwasherethatmywalkthroughwastoendasIwasgentlyledthroughtotheotherside...

Thesegardensareunusualintheirabsenceofwildlife.Wewerepleasedtofindthatthesevisionsofparadisecontainednomidges,snakesorspiders,buttheywere devoidofotheranimals

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aswell.Onlyonerespondentmentioned'allthedogsofmylife'boundingoverthehilltogreethim. Thenextquestion,'Didyouexperienceanycolours?',mayhavebeendifficultforthesubjectstoanswer,becauseitisnotspecific.Itisdifficulttoknowtowhatour respondentswerereferringwhentheyansweredeitheryesorno,butthisquestionimmediatelyfollowedthequestionconcerningthelandscape,itisreasonableto assumethattheanswersalsoconcernedthelandscape.Onlyathirdofthesample,saidtheyhadexperiencedcolours.'Iwasfloatingthroughswathesofwonderful, beautiful,translucentcolours,morebeautifulthananyIhadeverseenonearth.' 4 Music Wewereinterestedinthefrequencywithwhichmusicisheard,assomepreviousreportsmentionthepresenceofheavenlychoirsandheavenlymusic.Ourresearch suggestsmusicisrelativelyrareonly19percentdescribedhearingit.Intheindividualaccounts,themusicwasusuallydescribedas'wonderful'.Itisworthnotingthat thereisscientificevidencewhichshowsthatmusiciselaboratedintherighttemporallobe.Damagetothisareacanresultintheinabilitytounderstandmusical sequences,soalthoughthenotesarestillhearditisimpossibletoextractthemelody.Rhythmisalsolocatedinthisareaofthebrain.Thus,damagetothisareawill resultinlackofmusicalappreciation.Arecentfindingsuggeststhatconcordantmusicalsoundsarespecificallypickedupbytherighthippocampus,astructureinthe righttemporallobe.Thelefthippocampusdetectsdiscordantnotes.Itisthuspossibletohypothesizethatduringthehearingofheavenlymusic,whichtoWesternears usuallymeansconcordantmusic,therighttemporallobeisactivated. 5 PositiveandNegativeEmotions StrongpositiveemotionsarereportedcommonlyinNDEs,andourquestionsweredirectedattryingtodefinemoreaccuratelythefeelingsdescribed.Wedefined threedimensions:calmnessandpeacejoyandlove.Overall,82percentfeltcalmnessandpeace,40percentfeltjoy,and38percentfeltlove.Therewasa

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clearoverlapbetweencategories,withmostpeoplefeelingcalmnessandpeace.Ofthosewhofeltjoyandlove,9percentfeltjoyonly,and8percentfeltloveonly, while28percentfeltbothjoyandlove.
...IexperiencedafeelingofutterpeaceandwasconsciousthatIwassmiling. ...Ifeltacompletesensationofhappinessandcontentment. Forthatisthedominantfeeling,thememoryandknowledgeofultimate,totalpeace. Iwasconvincednolivingpersoncouldexperiencesuchjoy.TheonlywayIcanexplainitis,thinkofthehappiestmomentofyourlife,andwhenyoudo,thathappiestmomentis awfulpaincomparedtowhatyoufeel... Iwasfilledwithelationandpurejoythenearestdescriptionofthefeelingwasasachildonthelastdayofthesummertermknowingsixweeksholidayloomedaheadfullof freedomandsunshine.Ifeltabsolutelynofearatall,justutterpleasureasifIwasoffsomewherewonderful.

Withthepeaceoftencomesafeelingofprofoundknowledge,arealizationthatonehasbeengiventheanswertoallthesecretsoftheuniverse.
...Iwaspeaceful,totallycontent,andIunderstoodIwasbornonearthandknewtheanswertoeverymysteryIwasnottold,Ijustknew,thelightheldalltheanswers. Allaroundmeweretheanswerstoeverything,nopuzzlesbecauseIhadbeengiventhekeytounderstandingeverything. Sadly,whenthiswomancameback: Ikeptthesenseofhavinghadawonderfulexperience,arevelation.Unfortunatelythemagickeytounderstanding,PureLogic,hadbeentakenfromme.Istillseethroughaglass darkly.

Becausemanyoftheseexperiencesarecatastrophicandoverwhelming,weexpectedthatalargeproportionofoursubjects

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wouldfeelfear.Intheneardeathliteratureveryfewpeoplereportfeelingfear,andusuallytheonsetoftheexperienceisheraldedbypeaceandcalmness.Itwasthus importanttoaskaspecificquestionaboutfearwhichwepredictedwouldbepresent.Theresultsdonotsupportthispredicition,asonly15percentreportedfeeling anyfear.Wearealsoconcernedaboutfeelingsofloss,eitherthelossoffamilyandfriendsorthelossoflife.Again,wepredictedatsomepointintheexperiencea highrateoffeelingsofloss.Againthedatadonotsupportthepredictiononly9percentdescribedthesefeelings.Itmaybethatonlythosewithpositiveexperiences tendedtowritetousorthatthosewhohadnegativeexperiencestendedtosuppressthem.ItseemsmoreprobablethatintheoverwhelmingmajorityofNDEs,the predominantemotionispositive,andthatitisonlyintheabsenceofsuchpositiveemotionthatanyelementoffearisexperienced. 6 MeetingPeople Intheliterature,itisusualfortheneardeathexperiencertomeetapersonduringtheexperience.Usually,itisafriendorrelativewhohasdiedlessoftenitisa strangerorareligiousfigure. Only38percentofoursamplemetsomeonetheyknew.Ofthese,halfmetonlyrelatives,9percentonlyfriends,and10percentmetboth,while28percentmet peopletheyknewwhowereneitherrelativesnorfriends.TheNDEliteraturesuggeststhatwhenrelativesorfriendsaremet,adultsusuallymeetthedeadwhereas childrenmeetlivingfriends.Inourstudy,however,39percentofadultsarelittledifferentfromchildreninthisrespect,andsecondly,theinclusionoflivingpeoplein thescenariosuggeststhatthepsychologicalmodelisnotentirelyconsistentwithanafterdeathexperience. BecauseofawidevariationintheseverityoftheincidentcausingtheNDE,itcouldbepredictedthatsubjectswhowerenotactuallyveryneardeathwouldbemore likelytoseelivingthandeadpeople.However,theanswertoourquestion,'Wereyoupronounceddead?'showednosignificantdifferencebetweenthosewhowere andthosewhowerenot. Anumberofpeoplesawstrangers.Itwouldbelogicaltoassumethatonewouldbemostlikelytoseepeopleoneknew,but

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morethan40percentsaidtheywereawareofstrangers.Itwouldalsobeexpectedthatheavenwouldbepopulatedbyreligiousfigures,butonlyonethird(34per cent)admittedmeetingareligiousfigure.Fortypeoplewhodescribedtheirreligionasimportant,andtwentythreeforwhomitwasnotimportant,sawreligiousfigures. Sixtyonepeoplewhosereligionwasimportant,andseventynineforwhomitwasunimportant,didnotseereligiousfigures.Therelationshipbetweenthinkingreligion importantandtheseeingofreligiousfigureswashighlysignificant(p=0.006). 7 Memories Investigationofmemoryhasshownthatdifferenttypesofmemoryareprocessedinveryspecificbrainareas.Memoriesdealingwithwords(verbalmemory)are processedbythedominant(usuallyleft)hippocampus,whereasspatialdataareprocessedinthenondominant(usuallyright)hippocampus.Itisthuspossible,by lookingatthestructureofthememorieswhichareevoked,todecidewhetherornottheyarerecalledmainlyfromtheleftortherighthemisphereofthebrain. AlthoughsomeresearchershavefoundahighincidenceofpastlifereviewsintheNDE,8 inoursample,itwasrare.Only12percentsaidthatscenesfromthepast camebacktothem9percentsaidthattheyexperiencedmemoriesfromtheirlife.Inonlyabouthalfofthese(53percent)werethememoriesconsideredsignificant. Withregardtothepartofthebrainthatwasactivated,44percentofthesesaidthatthememoriesweremainlypictorial,28percentthattheyweremainlyverbal, while29percentsaidboth.Thereisthusaclearindicationthatmemorieswerelargelyvisiospatialandcomingmainlyfromtherighthemisphere. Wealsoaskedwhetherscenesfromthefuturewereseenintheexperience.Only13percentrepliedyes73percentsaidno.Ofthosewhorepliedyes,23percent saidthesewerescenesoftheworld'sfuture,48percentthattheywereoftheirpersonalfuture29percentsawboth.Laterfeelingsofdjvuaresometimeslinked bytheexperiencerwiththesevisionsofthefuture.Onepersonreportedthatitwasasifhewererememberingglimpsesofavideohehadoncebeenshown.

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8 TimeandThinking BoththeprocessofthinkingandthesenseoftimearesaidtobealteredduringNDEs.Wetestedthis.Inanswertothequestion,'Didtimeseemtoalter?,64percent saiditdid.Ofthese,12percentsaidthatitwentfaster,46percentthatitslowed,and41percentsaidthateverythingseemedtohappenallatonce. Halfthesample(49percent)feltthatthespeedoftheirthoughtswasaltered.Almostathirdsaidtheywereincrediblyfast(30percent)athirdsaidtheywerefaster thanusual.Onlyathirdsaidtheywereslowerthanusual. 9 TheBarrier Thebarrierisapointintheexperiencebeyondwhichtheexperiencerisunabletogo24percentexperiencedagateorborder.Sometimesthebarrierissimplya feelingthatyoucangonofurther,butoftenittakesaphysicalform:

Iwasinalanewheretherewereveryhighornamentalgoldengates,insidewasthemostbeautifulgarden...Ipushedthegatesandtheygavewaytomypush,buttryasImightI couldnotgetin,therewassomethingbehindmeonbothsideswhichseemedtobestoppingmefromgoingin.Iwassoupsetatnotbeingabletogetin,butintheendIgaveup trying.

Itisnotentirelyclearwhythereisaneedforabarrier.Itwouldbeperfectlypossibletogotoheaven,haveadayoutplayinginthewonderfulandhighlycoloured countryside,andthenasthelightslowlysankinthewesttobesenthomebacktoyourbody.Itdoesnotworklikethat.Itseemsasifitisnecessaryforheaventobe dividedintotwoparts,thatwhichisaccessible,andthatwhichisnot.Thereismarkedpsychologicalsignificanceattachedtothisdivision.Theimplicationisalways thatifyougobeyondthebarrier,thenyouwillneverreturn. 10 TheReturn Ourentranceintoheavenisinvoluntary.Wearesimplytakentherebytheexperience.However,weareoftenallowedahandinourreturn72percentsaidtherewas adecisiontoreturn.In52

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percentofcasesthepatientmadethedecisionpersonallyin48percentitwasmadebysomeoneelse58percentwantedtoreturn,42percentdidnot.Itseems thatabouthalfthepeopleweresentbackandhalfmadeavoluntaryreturn.Askedwhethertheywouldliketohavetheexperienceagainandcontinue,52percent saidtheywould,48percentwouldnot. Thereisasignificantrelationshipp<0betweennotwantingtoreturnandwantingtheexperienceagain.Of134whohadwantedtocomeback,55wantedthe experienceagainwhereas79didnot.Ofthe89whodidnotwanttoreturn,64wantedtheexperienceagain. 11 Transformation MorsehassuggestedthatthehallmarkoftheNDEisthatitinducessomechangeintheexperiencer.9 Askedwhethertheyortheirlifehadbeenchangedbythe experience,72percentsaidthatithadchangedtheminsomeway.Byfarthemostcommonchangereportedwasinpeople'sattitudestowardsdeath82percent saidtheynowhadlessfearofdeath,thoughmanystillfeltapprehensiveaboutdying.Thislackoffearofdeathisnotnecessarilylinkedtoaconvictionthatthereisan afterlife,andlessthanhalf(48percent)believedinpersonalsurvivalafterdeath.Oftenpeoplefeelthattheirexperienceissomethingtheycanusetoreassureothers aboutdeath.
Theexperiencehashadalastingeffectuponmylife:ifthatwas'neardeath'Ihavenofearwhenmytimefordyingcomes.Ilookforwardtoitwithexpectationofthatwonderfuljoy andpeace. Theremaywellbe'lifeafterlife'oritcouldbethewaythebrainshutsdown,eitherway,deathissomethingtolookforwardto,whenitcomes. WhenIawokeIfeltverymuchatpeace.IhavesincetoldpeoplethatInolongerfeardeathitselfI'veneverfelttheneedtotalkaboutitbuthavehappilyrelatedtheeventsto anyinquiringperson... ...whenpeopletellmetheyareafraidtodieIalwayscometrottingoutwiththisexperienceeveniftheydothinkIamnuts...

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Anyintenseemotionalexperience,whetherpositiveornegative,changespeopleinsomeway.Theexperienceofthetransforminglightisformanythemostprofound emotionalexperienceeverencountered.Thefeelingisoneofbeingoverwhelmedwithuniversallove,ofbeingacceptedintotalitybysomelovingbeing.Thememory ofthislovingandcompleteacceptanceseemstoenablepeopletoseethemselvesinaverydifferentperspective,andinsomewaytofeelandbehaveasadifferent person.Thereisasignificantrelationship(p<0.0008)betweenfeelingsofpeaceandcalmduringtheexperienceandsubsequentchange.However,thereisno relationshipbetweentheexperienceoffearandchangethirtysevenwhofeltfearchanged,whereastenwhofeltfeardidnotchange.Thereisasignificantrelationship betweenloveandchange.Ofthe116whofeltlove,109changed.However,ofthe179whodidnotfeellove,123changed. Thereareotherpsychologicalreasonsforchange.Survivorsofdisastersinwhichothershavediedaremarkedbytheexperience.Theymayfeelguilty('Whyme?') andwonderwhytheyhavebeensingledoutforsurvival.Onewayofmakingsenseofthisistofeelthatone'sownescapewasinsomewaytheworkofdestiny,thatit haspersonalsignificance.Tocomeneartodeathandthenescapeitmustbeoneofthemostprofoundhumanexperiences,withorwithoutanNDE.Anyonewhohas everbeeninasituationwheredeathseemedimminentorinevitable,butwhothensurvives,feelstosomeextentreborn.Itisasthoughonehasbeengivenasecond chance,thatoneissomehowspecial'tobealivewhenonemightsoeasilyhavedied. AlmosteveryonewhohashadanNDEfindsthatheorshehasadifferentperspectiveonlife,andatleastonecorrespondentfoundthismadeithardtobepatientwith others'seeminglytrivialpreoccupationsandpriorities.Morecommonly,respondentssaidtheyfelttheexperiencehadmadethemmorecaring,andmoresympathetic towardsothers'needs:
Ihaveneverbeenaparticularlyreligiousperson...orfoundanyanswersinreligion.ButsincemyNDEIfindIhavebecomemoresympathetictootherpeople'sproblems...Itry totellpeoplethatlifeisshortandwemustallmakethebestofitthatwecan...

Transformation,however,isbynomeansuniversal28percent

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ofthepeoplewequestioneddidnotfeeltheexperiencechangedtheminanysignificantorpermanentway. 12 FaithandtheNDE Forafew,theNDEisconfirmationofareligiousfaiththeyalreadyhave.Moreusually,itisaspiritualawakeningthatmayhaveverylittletodowithreligioninthe narrowestsense.Fortytwopercentreportedthattheyweremorespiritualasaresult22percentclaimedtobea'betterperson',and40percentsaidtheywere moresociallyconsciousthanbefore.TheNDEseems,then,tobroadenreligiousfaithratherthansimplytoconfirmit,leadingtoarecognitionthatmanypathsleadto thesametruth.Whenthepresenceofsomehigher'Being'isfelt,thisisonlyseldomdefinedas,forexample,aCatholicoraJewishGod.ChristianiconssuchasJesus andMaryareonlyrarelyencountered.Theexperienceshave,however,auniversalquality.Ifthiswasapurelypsychologicalexperience,onewouldexpectittobe muchmoreculturallyinfluencedthanitseemstobe. TheNDEcertainlytendstoconfirmbeliefinsomeformofafterlife.MostwhohavehadanNDEhaveastrongconvictionthatsomeimportantpartofthemtheir consciousness,theirsoulcanexistquiteindependentlyoftheirbody,andmaycontinuetodosoafterdeath.Itisinterestingthatonly28percentofthesamplesaid thattheywouldbelesslikelytocommitsuicideaftertheirexperience. Althoughitisanaturaltendencyforonetotrytointerpretanewexperienceinthelightofone'sexistingbeliefsystem,mosttendnottodothiswiththeNDE.Itis muchmorelikelyonewilltrytomodifyone'sbeliefsystemiftheexperiencedoesnotseemtofitintoit.OnepractisingRomanCatholicexpressedherownsurprise thatherexperiencedidnotseemtoberelatedtoherreligion.
HadIdied,IwouldmostcertainlyhaveexpectedthatanyvisionsIhadwouldhaverelatedtomyfaith,andifIwastoseeaBeingofLightIwouldhaverelatedittoJesusorMary oranAngel.Asitwas...threeBeingsappearedtomeasyoungIndianmen...dressedalikeinhighneckedsilvercolouredtunicswithsilverturbansontheirheads...My wholelifestylewaschangedasaresultandI'vesince

Page150 donemuchreadingaboutvariousreligionsandphilosophies.

Otherrespondentsexpressedasimilarview.
[myexperience]...hasn'tmadememore'religious':whatIdofeelisthattherearesomanyreligionsintheworld,whyshouldourGodbetheonlyoneorindeedthecorrectone?I feelmyexperienceprovedthereisaGodbeforethatIdon'tthinkIreallybelievedinanything,justacceptedwhatmyparentsbelievedin. I'vealwaysbelievedinlifeafterdeath,thoughInolongerbelongtoanyformoforganizedreligion,preferringtofindmyownpath,butifIneededanythingtoconfirmmybeliefin anotherplaneofexistence,thatexperiencecertainlydid.Ifeelsogratefultohavehadit. Myownbelief,andIamnotareligiousperson(Ididnotbelieveinanafterlifebeforethishappened),isthatweleavethislifeaseasilyaspassingfromoneroomtoanother... BeforemyexperienceIhadwondered,likemost,aboutdeathand,likemost,wasafraidoftheunknown.InowcountmyselfamongtheprivilegedinthatInowknowthatthereis nopain,thereisnothingotherthantheendingofonechapterandtheturningofthepage.

13 PsychicGifts AnincreaseinpsychicpowersisoftenreportedbythosewhohavehadNDEs,and47percentofoursamplesaidtheyfelttheexperiencehadmadethemmore psychicallysensitive. Severalsaidtheprecognitiveabilitytheyacquiredwasboundupwitha'lifepreview'experiencedduringtheirexperience.Djvufeelingsarecommon.Oneperson reportedthathecouldsometimesanticipatemajorfutureoccurrencesinhislife,andexplainedthisbysaying,

Itisalmostasif,duringtheneardeathexperienceIsawaspeededupvideoofmyfuturelifeinordertoselectitortheother.Itseemsthattheoddvideoframehasbeen remembered.SimilarlyIcanforeseethefutureofsomepeople'sdestiny,butnoteveryone,justpeoplewhoseemtohaveasayinmyown.

Strongdjvufeelings,premonitions,anoccasionalexperience

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oftelepathiccommunication,do,however,occurquitecommonlyinthegeneralpopulation.Thebeliefthatonehashealingpowersisalsoquitecommon.Itisdifficult toknowwhetherthesebeliefsaremorecommonamongstthosewhohavehadNDEs.Itisalsopossiblethatthosewhohavepsychicexperiencesoracquirehealing abilitiesafteranNDEmayinfacthavehadthempriortotheexperience,butperhapshavebeenunawareorhavetakennoparticularnoticeofthem. Therearemanyreportsofpeoplewhohavedeveloped'psychicpowers'afteraheadinjury.Theprobabilityisthatthesefeelingsaremediatedbytherighttemporal lobe.Astudyofseventeenmediumsandagroupofcontrolsubjectsfoundthattherewasmoreevidenceofbraindamageinthemediums,particularlyrighttemporal lobedamage.10Theredoesseemtobestrongevidencethatheadinjuriesmayincreaseatendencytoclaimpsychicpowers,probablybecausetheyalterbrain function. TheNDEdoesnotsimplychangeaperson'sattitudestowardsdeathoftenithelpsonetoappreciatelifeandliveitmorefullyaswell.

Theeffectofmyexperiencehashadaprofoundeffectonmylife.IthanktheLordforeverynewday... Iamnotaparticularlyreligiousperson,butthisexperiencehastotallychangedmylife...Ilovelifeandliveittoitsfull.I'mjusthappytobeallowedtoliveonthisearthforthis comparativelyshorttime. Inowfeeleverydayisanewgifttome.MaterialthingsarenotnearlyasimportantastheyusedtobeandInowlookforwardwithpeaceandjoytothedayofmydeath... RecentlysomeoneaskedmewhatIwouldsayifIwastoldIhadtodienow.Myanswerwas,'I'dsay,''ThisisalovelyNow."'

14 Conclusion Theaccountswhichhavebeenreportedinthischapterformamovingtestimonytothesignificanceoftheneardeathexperienceinthelivesofthosewhohaveit. Detailedanalysisoftheaccountsleadstoasurprisingpictureofheaven,butaconfirmingpictureofuniversallove.Itisasiftheexperienceofstronganduniversal emotionisthebedrockofexperienceuponwhich

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issuperimposedapartialcognitiveandculturalmodel.Thisleadstoasurprisingjuxtapositionofimages,ontheonehandthepresenceofaBeinginalightcomposed ofuniversallovecontainingallpowerandknowledge,ontheotheraheavenwhichisnotablydeficientofcontentbyearthlystandards,containingneitherharpsnor angels. Afteranalysingalltheseaccountsoneisleftwiththeimpressionthattheexperiencersweredescribingexactlywhathappenedtothemasaccuratelyastheycan.There isaclearindicationofajourneybytheindividual'sconsciousness,firstoutofthebodyandthenintotheuniversalandwelcominglight.Thesignificanceofthese experiencestotheindividualisnotindoubt.Scientifically,theexperiencescannotbeentirelyexplainedbycurrenttheoriesofbrainfunction.Subjectivelytheyindicate bothamoralandlovingworldwherecarefortheindividualisparamount. Notes

1

J.E.Owens,E.W.CookandI.Stevenson,'Featuresof"Neardeathexperience"inrelationtowhetherornotpatientswereneardeath',Lancet,336(November, 1990),1,1756G.O.Gabbard,S.W.TwemlowandF.C.Jones,'DoNearDeathExperiencesoccuronlyneardeath?',JournalofNervousandMental Diseases,169(1981),1927B.Greyson,'Neardeathencounterswithandwithoutneardeathexperiences:comparativeNDEscaleprofiles',JournalofNear DeathStudies,8(1990),15161.

2

B.Greyson,'TheNearDeathExperienceScale',JournalofNervousandMentalDiseases,171(6)(1983),36975K.Ring,LifeatDeath:AScientific InvestigationoftheNearDeathExperience(NewYork,Coward,1980).
3 4 5

K.RingandC.K.J.Rosing,"TheOmegaProject:anempiricalstudyoftheNDEpronepersonality',JournalofNearDeathStudies,8(1990),21139. R.Moody,LifeafterLife(Atlanta,Mockingbird,1975)Ring,LifeatDeathM.B.Sabom,RecollectionofDeath(London,Corgi,1982).

B.GreysonandN.E.Bush,'Distressingneardeathexperiences',Psychiatry,55(1992),95110MargotGrey,ReturnfromDeath:AnExplorationofthe NearDeathExperience(London,Arkana,1985)M.Rawlings,BeyondDeath'sDoor(Nashville,Nelson,1978).

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6 7 8

Sabom,RecollectionofDeath. SusanBlackmore,DyingtoLive(London,Grafton,1993).

R.NoyesandR.Kletti,'Panoramicmemory:aresponsetothethreatofdeath',Omega,8(1977),18194R.NoyesandD.Slymen,'Thesubjectiveresponseto lifethreateningdanger',Omega,9(1979),31321.
9

M.Morse,TransformedbytheLight(London,Piatkus,1992).

10

P.Fenwick,'Someaspectsofthephysiologyofthemysticalexperience',inPsychology,SurveyNo.4,ed.J.NicholsonandB.Foss(Leicester,British PsychologicalSociety,1983),20323. Forafulleraccountofthedatagivenhere,readersaredirectedto:PeterandElizabethFenwick,TheTruthintheLight(London,Headline,1995).

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10 TheImportanceofDeathinShapingourUnderstandingofLife
AndrewEdgar Thischapteroffersanaccountoftheplacethatreflectionupondeath,andspecificallyupontheinevitablemortalityofhumanbeings,hasfortheinterpretationofour livesindividuallyandcollectively.ThefirstpartofthechapterwillbegivenovertoanaccountoftheworkofthetwentiethcenturyGermanphilosopherMartin Heidegger.Throughconsiderationofouranxietybeforedeathheattemptstorespondtotheproblemofwhatitmeanstobehuman.Itwillbesuggestedthat Heidegger'sargumentshavealarmingconsequences,inthattheyunderminethepossibilityoffindinganysecuremeaninginourlives.Recentdevelopmentsinsociology allowforamodificationofthisview.Heidegger'spositionisseentoexpresstheculturalandinstitutionalinhibitionsthatdistortourexperienceandunderstandingof deathincontemporaryWesternsociety. 1 HeideggerandHumanNature AtthecoreofHeidegger'sthinkingisavisionofwhatisentailedinbeinghuman.Putbluntly,humanbeingsarecreatureswithbodies,existinginphysical,butalso socialandhistoricalenvironments.Further,theyareunique,andthusseparatedfromotheranimals,letalonefrominanimateobjectsandplants,inthedegreetowhich theyareselfconsciousoftheirownexistence.Ahumanbeingisthusatonceanindividualwhoisfreetomakechoicesabouthisorherownlifeandactions,anda memberofasociety,andassuchisdependentuponthephysical,culturalandhumanresourcesofthesocietyandworldwithinwhichheorshe

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lives.Thismayappeartobeanunexceptionaldescriptionofwhatitistobehuman.Itis,sadly,adescriptionthatisatoddswithmuchtraditionalphilosophy,and Heideggerquiteexplicitlysetshimselfagainstmuchofthattradition. Inordertoencapsulatethefirstaspectofwhatitistobehuman,thathumanshavebodiesandliveinphysicalandsocialenvironments,Heideggerclaimsthathumans are'thrown'intotheworld.Theimageofthrowingisintendedtosuggestthearbitrariness,notjustofourarrivalintheworld,butalsooftheworldinwhichwearrive. Wenomoreasktobebornthanastoneaskstobethrownintoapond.Wehavenosayastothebodywehave(andthusnosayonthetalents,strengthsandabilities ourbodymayallowus),andnosayastotheparticularsocietyweenter.Thesocietywillhaveexistedforalongtimebeforeus,andwewillmakeamoreorless insignificantmarkonitsnatureandcomposition.Yet,incontrast,oursocietymakesanincalculablemarkuponus.Heidegger'sclaimisnotthathumansentertheworld readyformed,withtheirpersonalities,beliefsandattitudesintact.Whiletheymayhavecertaininnatetalentsandabilities,peoplebecomewhattheyarelargelythrough theimpactthattheirenvironmenthasuponthem.Anindividualbelieveswhatshedoesbecausethebeliefshavebeenlearntandreinforcedthroughexperiencesin society.Similarly,shewillexercisetheabilitiesshedoesbecausetheopportunities,toolsandmaterialsnecessaryfortheirdevelopmentareavailableinsociety.Even anathletebecomesanathlete,notsimplybecauseofthephysicalstrengthsofherbody,butbecausesocietyvaluesandallowsthedevelopmentofthatparticularform ofathleticism.Similarly,abeautifulwomanisabeautifulwomanonlybecausethecultureintowhichsheisthrownvaluesthatparticularphysicalappearance. Heideggerdrawsoutfurther,rathermoresurprisingconsequences,fromthisaccountoftheembodimentofhumanbeings,concerningthemannerinwhichwecometo knowourphysicalandculturalenvironment.Heideggerwishestorejectanyaccountofknowledgethatsuggeststhatweunderstandtheworldfirstandforemost throughreflectionorcontemplationofit.(Suchaccountsarepresupposedinmuchphilosophy.)ForHeidegger,knowledgeisprimarilygeneratedthroughouractivity intheworld,andsodependsonourhavingbodies,notjustin

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ordertoexperiencethatworld,butalsotomanipulateit.Wethusunderstandtheworldintermsoftheinstrumentalactivities,orthe'projects',uponwhichweare engaged.Indeed,forHeidegger,wetakenoticeoftheworldonlyinsofarasitisofsomepracticalusetous.'Thewoodisaforestoftimber,themountainaquarryof rocktheriveriswaterpower,thewindiswind"inthesails".'1 Asmiththusunderstandsmetals,notthroughabstractreflectionupontheirchemicalcomposition,but bymouldingthemintheforge.Similarlyhistoolsareunderstoodnotintermsofabstractinstructions,butinuse. Theoreticalreflection,inscience,mathematicsandphilosophy,isrequiredonlywhenthingsgowrong.Onlywhenwearefrustratedinourprojects,whenthehammer breaksorthemetalfailstobend,dowestepbackinordertoreflectuponthepropertiesofourtoolsandmaterials,andsoaskwhythingsdidnotturnoutasthey usuallydo.Onlythendowereflectuponwhatourprojectsreallyentail,onpreciselywhatitisweexpecttogetoutofthem,andthusuponbetterwaysofgoingabout them,orevenifitisworthpursuingthematall.Heidegger'scontentionis,then,thattheoreticalknowledgeissecondary,andoccursinresponseto,andagainsta backgroundof,mundanepracticalactivities,takenforgrantedskillsandabilities,andunarticulatedexpectationsabouthowouractivitieswillturnout.Heidegger's reflectionsuponknowledgewilltakeondeepersignificancewhenheturnstothequestionofdeath,fordeathmarksthefailureofallprojects,andsostimulatesthe mostprofoundanddisquietingreflectionofall. Beforeturningtotheissueofdeath,thesecondaspectofHeidegger'sviewofwhatitistobehumanmustbeconsidered.Whilehumansareembodiedsocial creatures,theyarealsoselfconsciousandautonomous.Asociologicalaccountofhumansmayleadtotheassumptionthattheyareinsomewaydeterminedbytheir socialenvironment.Thusitmightbethoughtthatwhatpeopleturnouttobe,doorbelievewilldependwhollyupontheparticularenvironmentsinwhichtheylive. Heideggerrejectsthisimplication,becauseitconfuseshumanitywithanyotheranimateorinanimatething. Asourknowledgeofphysics,biologyandchemistryimproves,weareabletomakeevermoreexactpredictionsabouthowobjectsandsystemsinthephysicalworld willreactandbehave.

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Weknowthatwaterwillturnfromaliquidtoagasat100degreescentigrade.Weknowthataplantwillbecomeabonsaiifitsrootsarecarefullyclipped.Wecan alsomakepredictionsabouthumanbeingsbaseduponbiologicalandmedicalknowledgeofhowourbodiesreacttocertainstimuli.Asthesocialsciencesbecome moresophisticated,wemightalsosupposethatwearecapableofmakingpredictionsabouthumanbehaviourunderspecificsocialconditions.Weknowthatahuman willdieifstabbedthroughtheheart,and(perhaps)thatunemploymentleadstoagreaterpropensitytocrime.However,toseehumanbeingsasdeterminedbyeither physicalorsocialpropertiesfailstorecognizethattheyarefundamentallyfree.Heidegger'spointmaybesummedupso:acausalordeterministicaccountofhuman behaviourcanneverbeexhaustive,becausenothingcanultimatelycausehumanstobehaveinaparticularway.Humansmaynotalwaysrecognizeit,buttheyare alwaysfreetoactdifferentlyinallsituations. Heideggermaybetakentobearguingthathumansarealwayscapableofactingcreativelyandunpredictably.Whilethefailureofaprojectmayjoltusoutofour complacency,thereisalwaysmorethanonewayofproceedingafterthisjolt.Therewillalwaysbearangeoftechnicalsolutionstotheproblem,aswellasreasons thatmaybecalledupontojustifythecontinuationoftheproject,ortojustifyitsmodificationorabandonment.Thecourseofactionthatischosenwilldependuponthe wayinwhichtheindividualinvolvedunderstandstheworldandhisplacewithinit.Thus,whiletheforestmayindeedbeseenastimber,itmayalsobeseenasasource offoodormedicinesthemountainmaybeaquarryoradefenceagainstinvasiontherivermaybeasourceofpowerorameansoftransportandthewindmaydrive thesailsofashiporawindmill.Similarly,thepersonmayunderstandhimselftobealumberjack,doctororsoldier.TheconsequencethatHeideggerdrawsfromthese reflectionsisthat,whilepeoplemaybethrownintotheworld,atsomepointtheymustalsochoosetounderstandthatworldandthemselvesinacertainway.They mustselectbetweenthecompetingpossibilitiesprovidedbytheirsocietyandbytheirimaginations,inordertoaffirmthat,atleastatthismoment,theyareindeed doctorsandtheysearchtheworldformedicine,orthattheyaresoldiersandtheyseekdefensiblepositionsand

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meanstodeploytheirtroops.AttheheartofHeidegger'sphilosophythereistheprofoundparadoxthatpeoplehaveanawesomeresponsibilityforawhollycontingent existence. 2 HeideggerandDeath Theresponsibilityofourfreedomisindeedsoawesomethatwewouldmuchratherforgetit.Wecan,quiteeasily,proceedbyassumingthatwehavenochoice.A foresterandabureaucratalikecanassumethatthereisnootheractivityuponwhichtheycouldbeengaged.Soldierscanassumenotmerelythattheymustattackthe enemy,butthatsuchactionsarejustifiedbythemostnoblevalues,ofdefendingcivilizationandevenofdoingGod'swork.ForHeidegger,suchthinkingis 'inauthentic'.Whileitisnotnecessarilyimmoral,foritdoesmakelifeeasier,itismistaken.Suchthinkingrestsuponamistakenviewofwhatitistobehuman,precisely insofarasitignoresourfreedom.Theexperiencethatforcestheindividualoutofinauthenticityisthatofanxiety,andspecifically,anxietybeforedeath. Heideggeriscarefultodistinguishanxietyfromfear.Ahumanmaybeafraidofsomethingintheworld.Imightbeafraidoftigers,thunderstormsorenemyfire.Anxiety issubtlydifferent.Heideggersuggeststhatanxietyisnotaresponsetosomethingintheworld,butisratheraresponsetoone'sveryexistence,andallthatisentailedin beinghuman.Theexperienceissodisquieting(andHeideggeracknowledgesthatwearetypicallyonlyawareofanxietythroughourattemptstoavoidit)precisely becauseeverythingencounteredintheworldismadetoappearinsignificant.Nothingcananylongerprovideagroundormotivationforouractionsandprojects. Thereisnoultimatereasonforbotheringtocarryonwithanything.Intherareandpreciousexperienceofanxiety,theworldinwhichthehumanbeingusuallydwells becomes'uncanny'.Heidegger'sGermantermisunheimlich,whichliterallymeans,'unhomelike'.Anxietythusstripsawayallthecosysecurityofourtakenfor granted,everydaylife. Thepointofthisspeculationbecomesclearerasanxietyandfeararecomparedasresponsestodeath.Fearofdeathisaninauthenticexperience.Itistoviewdeathas athreattomycontinuedexistence.Assuch,deathcomestobeassociatedwithcertainthingsintheworldthatmightbethecauseofmydeath(suchas

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tigers,bulletsandcancers).Yetdeathremainsamoreorlessdistantthreatinanotherwisesecure(andhomely)world.Heideggersuggeststhatinauthenticcultures encourageustoevadeconfrontationwithourowndeaths.Aphrasesuchas'Oneofthesedaysonewilldietoo',bysubstituting'one'for'I',neatlysidestepstheneed toconfrontdeathpersonally.(Astheoldjokegoes:Neversaydie.Say'passon','restinpeace'or'jointhechoirinvisible',butneversay'die'.)Weconsolethosewho aredying,assuringthemthattheywillnotdie,andtherebyalsoconsoleourselves.Ultimately,another'sdeathmaybeinconvenient,'ifnotevenadownright tactlessness',althoughtheotherperson'sdeathassuresusthatwe,atleast,arestillalive.2 Anauthenticrelationshiptodeathdoesnotentailamorbidbroodingonourmortality.Rather,itistorecognizethecentralityofdeathtowhatitmeanstobehuman. Deathhighlightstwoaspectsofhumanexistence.Firstly,onlyatthemomentofdeathisaperson'sfreedomtakenaway.Priortodeath,apersonisneverdetermined byhispast,forhecanalwaysengageinanewproject.Whilealive,alltheprojectsthatwehavepromisedourselves,fromgivingupsmokingtoaholidayinPeru,can stillbefulfilled.Eventhesinnermayrepent,sothatthesinsbecometheexceptionratherthantheruleofhislife.Atdeath,allthesepossibilitiescease.Deaththus highlightsthefreedomoftheliving. Secondly,one'sdeathisalways,unavoidably,one'sown.ForallotheractivitiesthatIcarryoutduringmylife,Icould,inprinciple,berepresentedbysomeoneelse. Someoneelsecouldwritethischapterforme,liveinmyhouse,andsoon.Imust,however,diemyowndeath.Butfurther,deathisalwaysmyown,because,atthe momentofdeathIbecomeawarethattheresourcesandinhabitantsofthesocialworldwill'failme'.MacquarriesuggeststhatChrist'sparableofarichmanstoringup hiswealthinnewlyenlargedbarns,corresponds,atleastinpart,toHeidegger'spoint.3 AlthoughHeideggermayconcurthatourexistenceshouldbejudgedbymore thanthemereaccumulationofpersonalwealthortheachievementofworldlyreputationandstatus,heisnotobviouslyseekingtodirectustowardsspiritual,orother worldly,rewards.Rather,heobservesthatatthemomentofdeathalltheworldlyprojectsthathavesustainedus,andgivenmeaningandpurposetoourexistence, crumbleto

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nothing.Deathmarkstheultimatefailureofanyprojectonwhichapersonmightbeengaged.Inconsequence,theclearsightedanticipationofdeathstimulatesthe mostprofoundreflection,resultinginthestrippingawayofeverytakenforgrantedpresuppositionofworthorvaluethatImighthaveusedtojustifymyexistence.An authenticexistenceisfreedofanybackgroundassumptionsorillusionsabouttheworthofouractivitiesandprojects.Thefactthatsomebodycontinuesinaparticular projectoractionultimatelydependswhollyuponthechoiceofthatperson. Suchclearsightednessamounts,forHeidegger,toourchoosingdeath.Inthissuperficiallybizarreclaim,Heideggerisnotadvocatingsuicide.Thatwouldentailthe reductionofdeathtoacontingentpossibilityofhumanexistence,alongsidealltheotheractivitiesthatapersoncouldundertake.Thepointisthatwhiletheprecise momentofourdeathisindefinite,thatitwilloccuriscertain.Thechoiceofdeaththerebyentailsacceptingthefactthattheverynatureofourexistenceischaracterized bydeath(andthusbyourfreedomandindividualresponsibility).Ifhumanbeingsarenecessarilyembodied,thentheyarealsonecessarilymortal.Theinauthentic pretencethattheworldisbenignorhomelyistherebyshattered.Theworldcannotbebenign,fortoliveinthisworldentailsourbeingdestroyedbyit.Hence,we shouldnotfearparticularthingsthatweencounterintheworld,asiftheyconstitutedsomedistinctiveandfinitecollectionofmortalthreats.Weshouldrather experienceanxietyattheuncanny,forthethreatcomesnotfromafewmenacingitemsinanotherwisebenignworld,butfromtheveryfactthatwearepartofaworld thatischaracterizedbymortalityandtransience. MacquarriesuggeststhatHeidegger'sphilosophydeliversusfromtheillusionsofinauthenticexistence,onlytooffer'anopeneyeddespair'.4 Deathgivesmeaningto humanexistenceonlybyrevealingwhatHeideggercallsits'structure',whichistosay,thepreconditionsofwhatitistobehuman.Itcannot,however,givemeaningin thesenseoffulfilment.TheimplicationofHeidegger'saccountisthattheindividualwhodiescontentintheachievementsandpurposesofherlifeisultimatelydeluded, andhasdonenothingmorethanappeaseaninauthenticsociety.

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3 TheSociologyofDeath Heideggerprovidesastimulatingviewofwhatitistobehuman,reflectingprofoundlyuponboththesocialaspectsofhumanexistenceandtheindividual'sscopefor autonomy.However,hisaccountofanxietybeforedeath,anditsconsequencesintherecognitionoftheungroundednatureofourexistence,isintuitivelyproblematic. Inthissection,anattemptwillbemadetoconstructamorepositiveviewoftherolethatreflectionupondeathplaysingivingmeaningandcoherencetoourlives,by consideringsomerecentdevelopmentsinthesociologyofdeath.Specifically,itwillbesuggestedthatHeideggerpaystoolittleattentiontothesocialandhistorical natureofhumanexistence.Whileherecognizestheneedtounderstandhumanexistenceinsociohistoricalterms,thereislittleconcreteanalysis,sothatmanyofhis commentsonsocietyarenaiveorsuperficial. WhileagreeingwithHeidegger'spremisethathumansareuniquelycreaturesthatareawareoftheirmortality,NorbertEliasisatpainstopointoutthatthisawareness isitselfduetohumanculture:'Itisvariableandgroupspecificnomatterhownaturalandimmutableitseemstothemembersofeachparticularsociety,ithasbeen learned.'5 Yet,ithasalsobeenarguedthatwhilesocietymakesusawareofourmortality,thatveryawarenessposesathreattothesociety.AnthonyGiddens, workingwithinaHeideggerianframework,arguesthatonaneverydaybasis,peopleinsocietytakeforgrantedthecoherenceandworthoftheiractivities.This coherenceandmeaningis,however,fragile,andcanbeeasilyoverwhelmedbyeventsthatremainoutsidethecontrolofthesociety.Sucheventsincludemajorand lifethreateningones,suchasnaturaldisastersorthreatsofinvasion.Deathistheparadigmformofdisruption,becauseitmostvividlyandirreversiblydemonstratesthe limitsofthesociety'spowertoguaranteethesecurityofitsmembers.Thisfailuremustbeexplained,excusedorhidden,atpainoflosingtheindividual'scontinuedtrust in(andthuscommitmentto)theexistingsocialorder.6 Inconsequence,therichnessanddepthofasociety'scultureandtechnologyrepresent,atleastinpart,that society'sattempttocopewithandexcusethedeathsofitsmembers. ZygmuntBaumanhasdevelopedthisapproachbysuggesting

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thatwithinanygivensocietycertain'survivalpolicies'willbeacceptedandsustainedaspartofthedominantculture.Asurvivalpolicyisameans'tochannelthehorror ofdeath(andthustoorganizetheindividual'sconcernwithsurvival)'sothatitservestomaintainthestabilityofthesocietytowhichtheindividualbelongs.7 Bauman offersbriefanalysesoffoursuchsurvivalpolicies.Firstly,abeliefinGodexplainsmortalityintermsoftheinscrutabilityofdivineprovidence.Apromiseofsurvival beyondthedeathofthebodyshiftsaperson'sattentionawayfromthebody,thefateofwhichcannotbecontrolled,towardsthoughtsandactionsthatareunder voluntarycontrol.Secondly,withthedevelopmentofmodernscienceandrationaldoubtintheEnlightenment,theotherworldlyandthereforeuntestableclaimsof religionscomeundersuspicion.Theyarereplacedbyasecularcommitmenttotheimprovementofthelivingconditionsofthecommunity.Sufferinganddeatharethus justifiedaschallengestobeovercome,ortrialsthathavetobepassedthrough,inordertoachieveagloriousfutureforone'sfellows.Nationalism,communismand fascismprovideexamplesofthispolicy.Thirdly,inanincreasinglyprivateandindividualisticsociety,survivalissoughtinthelovebetweentwopeople.Individualsseek anidealrelationshipthatwilltranscendthefinitudeoftheirbodilyexistence.Theimpossibilityofthisdemandleadstoexcessiveexpectationsbeingplacedonpersonal relationships.Finally,BaumansuggeststhatincontemporaryWesternsocieties'regimesofselfcare'aredominant.Theseinvolvearenewedfocusupontheindividual's body.Ontheonehand,theindividualtriestotranscendthelimitsofthebody,notbypostponingdeathorbyenvisagingsomeformofsurvivaloutsidethebody,but throughincreasingthebody'sperformance(typicallyinsomeformofathleticism).Thelimitationsarethereforetranscendedinmomentarypeaksofphysical achievement.Ontheotherhand,fearofdeathisdisplacedbyapreoccupationwithhealth,therebyfacilitatinganactiveengagementwithspecificcausesofdeath,such asheartdisease,cancerorstress,bychangingone'sdietorbyundertakingrigorousexerciseroutines. Baumannotesthatthesuccessofsuchpolicieswilldependuponthetypeofsocietyinwhichtheyareused,andthusupontheavailabilityofappropriatephysicaland culturalresources.PhilipMellor,followingGiddens,offersananalysisoftheexperi

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enceofdeathincontemporaryWesternsocietythatcomplementsBauman'soutline.Mellor'saccountbeginsbynotingthatmoderncultureoffersaproliferationof explanationsandjustificationsfordeath.8 Withinamulticulturalsociety,allfourofBauman'ssurvivalpolicies,andmore,willcoexist.Whilesomemaybemorewidely acceptedthanothers,nonewillhavecompletedominance.Preciselybecausenosingleaccountcanbeacceptedwithoutquestion,noonecanrestsecureinhisorher beliefs.Thereligiousbeliever,forexample,willbecontinuallyassaultedbythescepticismofasecularworldthenationalistorcommunistisconfrontedbythetragic failureofbothcausesinthetwentiethcentury.InHeideggerianterms,theindividualcannotthenmerelyrestintheinnocentsecurityofinauthenticity.Theprojectsthat mightmakesenseofdeatharecontinuallythreatened,andthusrequirecontinualreflection(orastubbornshortsightedness)inordertoremainplausible.Itisthus withinamulticulturalsocietythattheindividualcomestobearadeeperresponsibilityforhisorherbeliefs. Thelackofasingleaccountofdeathservestoincreasethethreatthatdeathposestothesocialorder.ForGiddens,multiculturalsocietiesthusdealwithdeath primarilythroughitsactiveconcealment.Incontemporarysociety,deathandtheprocessofdyingareremovedfromeverydayandpublicexperience.Eliasdescribes thisso:
Parentsin[modern]societiesareoftenmorereticentthanearlierintalkingtotheirchildrenaboutdeathanddying.Childrencangrowupwithouteverhavingseenadeadbody.At earlierstagesofdevelopmentthesightofcorpseswasusuallyfarmorecommonplace.9

Giddensnotesthateventhehandlingofcapitalpunishmentfollowsthispathofincreasedexclusionfrompublicview.Similarly,inmedicalpracticethedyingare physicallyremovedtohospitalsandhospices.Yetthisprocessofconcealmentcannotbewhollysuccessful,preciselybecauseitplacesagreaterburdenonthe individualtocopewithdeathandbereavementwhentheyfinallyhavetobefaced.Alackoffamiliaritywithdeathleavesthesurvivoratalosshowtobehavetowards thedying.Eventheritualsofthefuneralhavebecomeunfamiliar,andthusincreasinglydemanding.Bauman'spolicyofselfcarethusprovidesa

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reasonable(ifshortsighted)responsetothisproblem.Lackinganysociallyacquiredabilitiestoarticulateouranxietybeforedeath,oratleasthavingthisabilityonlyin thecontextofcontinualdoubtandquestioning,weavoiddeathinfavourofaconcernwithphysicalperformanceandhealth. ThesesociologicalanalysesmaynowbeusedinareconsiderationofHeidegger.IthasbeensuggestedabovethatHeidegger'saccountisultimatelyinsufficiently sociological.Atthecruxofhisargumentistheclaimthatthecommunityandthematerialworldfailusatthemomentofdeath.Thiswasinterpretedintermsof Macquarrie'sappealtotheparableoftherichmanstoringupmaterialwealth.Onthislevel,Heidegger'spointisacceptable.However,theveryexistenceofsurvival policiessuggests,atadifferentlevel,thatthesocialworlddoesnotleaveusaloneatdeath.Onthecontrary,acultureiscapableofprovidinguswithrichresourcesin ordertomakesenseofourdeath.Itmaybesuggestedthatjustashumansareconstitutedaslivingbeingsbytheircommunities,theyarealsoconstitutedasbeings whocandie.(Indeed,giventhethreatthatdeathposestosociety,suchconstitutionisnecessaryforthecontinuedstabilityofsociety.)Deathisnomoreabrutefactof existencethanisanythingelseinaculturallyinterpretedworld.Thefailureofcontemporarysocietyislessduetoaninabilitytohelp,asHeideggerargues,thantoan activewithdrawalofhelp.Heidegger'saccountofthewayinwhichinauthenticsocietyprovidesuswiththemeanstoavoidtalkingaboutandconfrontingdeathis clearlyechoedintheaccountsofGiddens,MellorandElias.YetGiddensandMellor,especially,suggestthatthisisnotanescaperouteofferedtothefearful,butthe activeconcealmentofafailingofcontemporarysociety.Thelivingarephysicallyexcludedfromthepresenceofthedeadanddying,andaredeniedthelanguageto expresstheirfeelingsortheirsupportforthedying,preciselybecausetherearenolongertheculturalresourcesavailablethatwillallowmostpeopletofeelsecurein thefaceofdeath.Thegroundlessnessofmyexistence,thatisexposedinauthenticity,isnotthensimplygivenasHeideggersupposes,butisrathergeneratedbya particulartypeofsociety. Heideggerneednotdenyallofthis.Heneedonlyobservethattheresourcesprovidedbyaculturetomakesenseofdeathareindicativeofaninauthenticstance towardsdeath.Foranindivid

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ualtolooktohissocietytoprovideacastironexplanationofdeathisasignofinauthenticity.Baumanimplicitlyacknowledgestheinauthenticityofsurvivalpolicies, notingthat'thesearchforafoolproof...policyofsurvivalisitselfaruseaconspiracyofsilenceabouttheultimatefutilityofeffort,toburythetruththatthe ostensiblepurposeofthesearchcannotbereached.'10Mellor'saccountis,however,evenmoresignificant.Thebackgroundofdoubtthatliesbehindallpersonally adoptedsurvivalpoliciesinamodernpluralistsocietysuggests,paradoxically,thatsomestateakintoauthenticityisbecomingunavoidable.Theindividualcannotbut beawarethathisorhersurvivalpolicymaybeflawed,andthatitcannotberigorouslydefended.ItmaybenotedofthetwostrategiesthatBaumandescribesunder thepolicyofselfcare,thatconcernwithone'shealthisanepitomeofinauthenticity.Aconcernwithphysicalperformance,however,engageswiththelimitationsof one'sbody(andthusthecontingencyofone'sbodilyexistenceandone'sinevitablemortality)anddoesnottrytocheatdeath.Assuch,ithaseveryindicationofbeing authentic. Yet,asGiddenshasargued,theindividual'sincreasingawarenessofthefragilityofhersurvivalpoliciesiscompromisedbythedevelopmentofsocialinstitutionsthat servetoconcealdeath.Paradoxically,inauthenticitymaynolongerbechosenasameansofescapebytheindividual,butisratherenforcedonaroutinebasisdueto thelackofopportunitytowitnessdeathordying,andbythewithdrawalofresourcesthatallowpeopletoarticulateoranticipatetheirexperiencesofdeath.Amore socialconceptionofhumanbeingthanthatofferedbyHeideggerthusallowsthesuggestionthatinauthenticityisnotafaultof,orevenanoptionfor,theindividual,but isratherafaultofthecommunitywithinwhichheorshelives.Whatevermotivationapersonmighthavetoliveauthentically,thatmotivationwillcometonothingifhis communityremovesthepossibilityoftheappropriateexperienceofdeath.Again,asEliasremarks,humanawarenessofdeathisalwaysshapedbyaparticularculture. ThispointisgivenrenewedsignificancebyBauman.Henotesthatdeathisnotmerelyathreattosocialstabilityperse,butmorespecificallytoreason.Thisdoesnot merelyindicatetheproblemsencounteredinprovidingacoherentaccountofdeath,butrather,asHeideggerargues,inthepartplayedbydeathasthe

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ultimatemarkoffailureofallprojects.Deaththerebyexposesthefutilityofallinstrumentalreason.11Theachievementofanygoalisultimatelytransitory.Mellortakes thispointfurther.12ModernWesternculturesdependuponthesuccessfuluseofinstrumentalreasoninthecontrolofthephysicalandsocialenvironmentthrough science,technologyandsocialadministration.Modernculturesmaythereforebeseentoshareafundamentalconcernwiththesubordinationofnaturetohumanends. Insofarasdeathmarksthelimitofthiscontrol,itposesathreattoanymodernculture,andthustoanyculturethatencouragesitsmemberstothinkandtounderstand themselvesandtheirworldinprimarilyinstrumentalterms.WhileHeidegger,especiallyinhislaterwritings,iscriticalofmoderntechnology,hisinterpretationofhuman existenceintermsofanengagementininstrumentalprojectssharesmuchwithmodernculture.Again,Heideggerappearsasamirrorofhistime.Itmaythenbe suggestedthatthe'cleareyeddespair'thatheoffershisreadersshouldleadnottotheabandonmentofanyattempttofindmeaningindeath,ortouseour confrontationwithdeathtogivesubstancetoourlives.Itratherservestomakeusawareoftheinhibitionsthatcontemporarysocietyplacesinthewayofsuch understanding. Notes
1 2 3 4 5 6 7 8

MartinHeidegger,BeingandTime(Oxford,Blackwell,1962),401. Heidegger,BeingandTime,2978. JohnMacquarrie,AnExistentialistTheology(London,SCM,1973),114. Ibid.,119. NorbertElias,TheLonelinessoftheDying(Oxford,Blackwell,1985),45. AnthonyGiddens,ModernityandSelfidentity(Cambridge,Polity,1991). ZygmuntBauman,'Survivalasasocialconstruct',inMikeFeatherstone(ed.),CulturalTheoryandCulturalChange(London,Sage,1992),13.

PhilipA.Mellor,'Deathinhighmodernity:thecontemporarypresenceandabsenceofdeath',inDavidClark(ed.),TheSociologyofDeath:Theory,Culture, Practice(Oxford,Blackwell,andTheSociologicalReview,1993),1130,at1819.

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9

Elias,op.cit.,85. Bauman,'Survival',21. Ibid.,1and5. Mellor,op.cit.,25.

10 11 12

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11 LifeandDeathintheLightofanEternalHope
PaulBadham 1 TheMeaningofLifeinaSecularContext Fromasecularperspectivelifehasnomeaningorpurposeotherthanthegoalswesetourselvesasindividualsorasmembersofacommunity.Death,understoodasa finalend,markstheterminusofourbriefexistenceonthistinyplanet.Lifemustthereforebesacredtoeachoneofus,foritisonlyinthefewyearswehaveonearth thatwearetoliveandmoveandhaveourbeing.AccordingtoEcclesiastes(theonlysecularthinkertohavehisworkincludedintheBible),allisultimatelyemptyand therefore'thereisnothinggoodforanyoneexcepttobehappyandlivethebestlifehecanwhileheisalive...itisgoodandproperforamantoeatanddrinkand enjoyhimselfinreturnforhislabours...toenjoylifewithawoman...andwhatevertaskliesinhandtodoitwithallyourmightbecauseinthegravetowhichyou areheadingthereisneitherdoingnorthinking.'1 EcclesiastesisoftenthoughtofascynicalorpessimisticandmanyChristianshavequestionedhowhisworkever cametobeincludedintheHebrewBible.Butfromasecularperspective,hisphilosophyoflifeisarealisticrecognitionofwhatitmeanstobehuman,andhisdenialof anyultimatepurposeisalwayslinkedwithadescriptionofhowwecanfindsatisfactionanddignityinacceptingthelimitsofourfinitude. 2 TheReligiousVisionofLife Fromtheperspectiveoftheworld'sgreatreligionsthehumansituationisverydifferent.InJudaism,ChristianityandIslam,human

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lifeispreciousbecausethesereligionsholdthathumanlifeisultimatelythecreationofanallpowerfulandalllovingGodwhowillstoenterarelationshipwithusand whoselovingpurposescannotbedefeatedbydeath.Inthistheisticcontexthumanlifeisseenincosmicperspective,andlifeisseenashavingenormoussignificance andmeaningasthefirststageonourjourneytowardsGod.InHinduismandBuddhismthemeaningoflifeisseendifferentlyasoneofmanylivesweshallpassthrough untilourabsorptionintotheabsolute,orourentryintothedeathlessstateofparinirvana.2 Butinbothcasesourpresentlifehascosmicsignificanceinthatwhatwedo nowshapestheKarmawhichwilldetermineourdestinybeyondthegrave. Thereisthereforeafundamentaldifferencebetweenapurelynaturalisticworldview,inwhichthislifeisallthereis,andareligiousworldview,inwhichthislifefindsit truemeaningagainstthebackdropofeternity.Thischangeinperspectivemaynotnecessarilymakeadramaticimpactonhowweactuallylive.Intheirjourneythrough lifeamortalistandasurvivalistmaybothfacethesamekindofexperiencesandchallenges,andrespondinsimilarwaystothem.Mostofourthinkingandplanningis directedtorelativelyshorttermgoals,andevenourlongtermthinkingforexampleaboutourcareers,housepurchaseorpensionplanningtendstostopatthe horizonofourretirement.Itisalsothecase,asweshallseelater,thatwhattheworldreligionsteachastothekindofbehaviourwhichbesthelpsusfashionourselves inreadinessforeternityisnot,atleastforthelayman,verydifferentfromahumanistvisionastothebestwayforustoliveauthenticallyinthepresent. ThereisofcourseonegreatdifferenceinthatthetheisticbelieverfeelsconsciousofthepresenceofGodandwillseektoacknowledgeGod'slordshipinworshipand prayer.Similarlythenontheisticreligiousperson,suchastheAdvaitaHinduortheTheravadaBuddhistwillpractisemeditationandmindfulnessandwillconsciously avoidthedominationofhumandesiresandpassions.Soreligiousconvictionsdochangebehaviourinwaysthebelieverregardsasimportant,butevenmore significantlytheychangetheperspectiveinwhichwhathappenstooneisunderstood.Andthisdifferentperspectivebecomesparticularlyimportantaswecometo facedeath.

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3 DeathastheCentralPointofDivisionbetweenaNaturalistandReligiousViewpoint Deathisthepointwherethenaturalisticandthereligiousvisionsofwhatlifeisaboutdivergemostsharply.Fortheone,deathmeansextinction,thefinalendingofour personalexistence.Fortheother,deathmarksadivisionbetweenourpresentmodeoflife,andafutureandhopefullybetterone.Sometimesofcoursethissharp distinctionisblurred,becausesomewhoprofessreligiousbeliefreinterpretreligiouslanguageinawhollysecularmanner,whileafewwhorejectreligiousbelief continuetohopeforsomekindofpersonalcontinuancethroughdeath.Whatisevenmorecommonisthatmanywhonominallyaffirmafuturehopehavenolively expectationofitsrealization.SuchastateisparticularlycommontodaywheremanycommittedChristianssufferconsiderable'cognitivedissonance'throughan awarenessofhowtheirbeliefsdifferfromthesecularassumptionswhichdominatemostinformeddiscussion,andconditionthebehaviourofmostmedicalpractitioners towardstheirdyingpatients. However,inatrulypluralistsocietyitiswrongthatoneparadigmshouldholdsway.Giventhatsomethinglike38percentofthepopulationofBritain(and70percent ofAmericans)believeinlifeafterdeath,3 itdoesseemappropriateinanacademicdiscussiontoexplorelifeanddeathfromtheperspectiveofaneternalhope,and considerhowthepossessionofsuchhopemightaffectthepersonfacingdeathandthoseseekingtoministertothedyingbeliever. 4 BeliefinaCreatorGod ThefoundationaltheisticbeliefsharedbyJews,ChristiansandMuslimsisthattheuniversewascreatedbyanallpowerfulandalllovingGodasthecontextinwhich sentient,rationallifecouldemergeandcouldcomefreelyintofellowshipwithGod.Thegreatestproblemfacingsuchavisionisthefactthattheworldcontainsmuch evilandifhumanlifeisconsideredastotallyextinguishedatdeath,therewouldappeartobenowayinwhichsuchevilcouldbeinanysenseexplainedoraccounted for.HencebeliefinGodiswhollydependentonsupposingthatGodcanovercomethepowerofdeath.HencebeliefinGodandbeliefin

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lifeafterdeatharetwomutuallyinterdependentdoctrines.LetusexplorethisbylookingmoredeeplyintotheproblemofevilandChristianresponsestoit. 5 The'ProblemofEvil'withinChristianity ThefactthatevilandsufferingundoubtedlyexistposesachallengetotheChristiansuppositionthatthisworldwascreatedbyanallpowerful,allknowingandall benevolentGod.Eitherhecannotabolishevil,inwhichcaseheisnotallpowerful,orhechoosesnotto,andcannotthereforebeallbenevolent.Manyattemptshave beenmadetomeetthischallenge.ProcesstheologysuggeststhatGodisnotallpowerful.ThesocalledChristianSciencesectseesevilasanillusion.Traditional theologyexplainsevilastheproductofthe'fall'ofthefirstmanandwoman.Popularpietysuggeststhatthoughtheproblemcannotberesolvedphilosophically,itwas resolvedreligiouslyintheCrucifixionofChristperceivedasGodincarnate,identifyingwithandsharinginthedepthsofoursuffering.Butseriousproblemsfaceall these'solutions'.TodenyeitherthecompetenceofGodtoendsufferingortheexistenceofevilseemsanevasionoftheissue.Ahistoricalfallistoomuchatvariance withthediscoveriesofarchaeology,anthropologyandevolutionaryhistorytobealiveoption.AndIhaveneverunderstoodhowtheproblemofevilissupposedtobe helpedbythenotionthatGodalsoexperiencesit.Wewelcomethesympathyoffriendswhoweknowarepowerlesstohelpus.Butwewouldfeelmockedby expressionsofconcernfromthosewhohaditcomfortablyintheirpowertosaveusbutchosenottodoso.Theproblemofeviliscertainlynotsolvedbysayingthat Godchoosestosufferwithusratherthanrescueusfromourplight. Somephilosophershaveputforwardthesocalled'freewilldefence'whicharguesthatthepossibilityofevilandtheexistenceofanobjectiveworldwithstablelaws ofnaturearenecessaryfortheemergenceoffreeandresponsibleagents.Thisviewformsanimportantpartofthe'soulmaking'theodicy,andalthoughitcantoa certainextentstandonitsownIshallconsideritsimplyaspartofthewiderthesis.Forifthefreeresponsibleagentswhoarecreatedthroughtheirinteractionwiththe stableenvironmentfaceafutureterminatedbysuffering,

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disease,deathandextinction,thenthequestionofwhyGodallowsevilremainsunanswered.Hencethefreewilldefenceneedsthewiderperspectiveofthesoul makingtheodicy. 6 TheSoulMakingTheodicy Thesoulmakingtheodicyfullyacceptsthat,lookingatlifesimplyfromwithinthetransitorylimitsofhumanexistence,thecaseagainstbeliefthattheworldwascreated byawhollybenevolent,allpowerfulandallknowingGodisoverwhelming.Thisworldisnotahedonist'sparadise.Itisastruggleforexistencewhereweearnour breadbythesweatofourbrow.Wefaceinnumerablechallenges,hardshipsanddifficulties.Ultimatelywewillageanddie,unlessweexperienceprematuredeath throughaccident,microbeorvirus.ButtheChristianperspectiveisnotconfinedtothislifeonly.Ifitweresoconfined,Christianswould,accordingtoStPaulbe'ofall peoplemosttobepitied.'4 However,fromitsfoundation,Christianityhasbeenareligioncommittedtobeliefinheaven,adivinekingdominwhichsorrowingandsighinghavenoplace,andin whichGodbecomesthemostcentralfeatureofourexperiencing.YetChristianshavealwaysintuitedthatsuchaworldcouldonlybeappreciatedandexperiencedby fullyformedpersons.Wehavetobecome'fitted'forheavenbywhatwedohere.Freeresponsiblebeingscannotsimplybecreatedbydivinefiat.Ratherwedevelop ourcharactersandpersonalitiesthroughfacinguptothedifficultiesandchallengesoflife,andtherebybecomepersonscapableofaneternalrelationshipwithGod. JohnHickexpressestheprinciplebehindthisconceptthus:
Virtuesformedwithintheagentasahardwondepositofhisownrightdecisionsinsituationsofchallengeandtemptationareintrinsicallymorevaluablethanvirtuescreated withinhimreadymadeandwithoutanyeffortonhispart...IfGod'spurposewastocreatefinitepersonsembodyingthemostvaluablekindofmoralgoodness,hewouldhaveto createthem,notasalreadyperfectbeingsbutratherasimperfectcreatureswhocanthenattaintothemorevaluablekindofgoodnessthroughtheirownfreechoices.5

ThiswayofthinkingwasclassicallyarticulatedbythepoetJohn

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KeatswhenhewrotetohisbrotherandsisterinApril1819,'Doyounotseehownecessaryaworldofpainsandtroublesistoschoolanintelligenceandmakeita Soul?...CalltheWorldifyouplease''TheValeofSoulmaking".'6 Inthisschemaweshapeourpersonhoodbythewayweengagewiththeresponsibilitiesand dutieswefaceintheeverydaytasksoflifeinaworldsubjecttonaturallaws,wherewhatwedoorfailtodohasconsequences.Itisnopartofthesoulmaking theodicythatsufferinginitselfisennoblingorcharacterforming,fortherewouldbeverystrongevidenceagainstsosimplisticaview.Butwhatthetheodicydoessayis thatarealobjectivephysicalworld,governedbyregularphysicallaws,providesanenvironmentmoresuitedtothedevelopmentofresponsibleagentsthanwouldan environmentinwhichdivineinterventionsavedhumanityfromtheconsequencesofitsfolly,orfromtheheartacheandchallengeimplicitinanyfiniteandphysical existence. Afterpersonhoodhasbeenfullyformed,then,itmaywellbethatlifeinaheavenofeternalrest,andpeaceandblisswouldbecomeconceivable.Butitcouldonlybe appreciatedandexperiencedbythosewhohavefirstundergonethepersonformingexperienceavailabletousinthisworld.Moreoveritislikelythatwemayneedto undergofurthergrowthinalifeafterdeath.JohnHickenvisagesmanylivesinmanyworlds,7 andthisviewhasmanyantecedentsinearlierChristianwritings.Within Catholicismthereisthetraditionofpurgatory,andmanyProtestantstalkofanintermediatestate.Hencethesoulmakingtheodicyisnotrequiredtosupposethatthe necessarygrowthiscompletedwithinthislife.Itmerelyclaimsthatthislifeprovidesagoodenvironmentforspiritualgrowthwhichmaywellneedfurtherdevelopment beyondthegraveasthepersonjourneysintoGod. Itisintegraltothisviewthatour'soul',characteroridentityaspersonsisnotsomethingwecomeintotheworldwith.Weshapeourpersonhoodbythewaywelive andinresponsetothechallengesandstimulioflife.Fromaphilosophicalstandpoint,thisviewrequiresaconceptofsoulasanemergentproperty.Anyviewofthe soulwhichtakesseriousnoteofmoderngeneticsandneurophysiologyhastoacceptthatthesoulisshapedandinfluencedbythewayourbrainsandbodiesdevelop andaremouldedbytheexperiencesoflifeandourresponsestothem.

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ConsequentlyIseetalkofa'soulmaking'theodicyasliterallydescriptivelanguageofhowouridentityisshaped.Clearlythisidentityisshapedinandthroughour bodilyexistence,butChristiansbelievethattheultimatedestinyofthissubjectwilltranscendthisexistence.KeithWardexpressesthislargervisionwell:
Godisthetrueendofthesoul,andinthissense,itsgoal,itsproperpurposeandtruenature,liesbeyondthephysicaluniverse.Thatisastrongreasonforthinkingthatthe subjectwhichisembodiedinthisworldmayproperlyfindotherformsofexperienceandaction,incontextslyingbeyondthisuniverse...Ofcoursethesouldependsonthe brain...butthesoulneednotalwaysdependonthebrain,anymorethanamanneedalwaysdependonthewombwhichsupportedhislifebeforebirth.8

7 TheMeaningofLifeandDeathinJudaism Judaismbeganasawholly'thisworld'faith.ItwasinthehereandnowthatGodwasrelatedtohispeople,andtheworldofthedeadwasoutsideGod'sdominion.At anearlystagesomeJewsappeartohavebelievedinsomevagueshadowykindofsurvivalinaplacecalledSheol,ratherliketheHomericpictureofHades.Butas timewentbySheolbecomesincreasinglyequivalentto'theGrave',inwhichitisassumedthatpeopleceasetoexist.'Wemustalldie.Wearelikewaterspiltonthe groundwhichcannotbegatheredupagain.''Manwillperishforeverlikehisowndung.'Heis'ofdustandwillreturntodust'.Inthegravehewillrotaway,'with maggotsbeneathhimandwormsontop.'9 ThisviewwasreconciledwithbeliefinalovingGodintwoways:firstbyassumingthatGod'sprimaryrelationshipwaswith thenationratherthantheindividual,andsecondbytheassumptionthatGodshowedhisconcernfortheindividualbyrewardingthevirtuouswithlonglifeand prosperityandpunishingthewickedwithearthlydisaster. Bothassumptionscameincreasinglytobequestioned.OldTestamentpsalmsandproverbsconstantlyraisetheissue'Whydotherighteoussuffer?'Thefullest discussionoccursintheBookofJob,whicheventuallyconcludesthattheonlypossibleresponseistoacceptthathumanbeingshavenorighttoquestion

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thewaysofGod,butmustsimplyacknowledgehisdivinewisdom.10ButtheinadequacyofsucharesponsebecameapparentduringthepersecutionofAntiochus Epiphanes,thefirstofthedevastatingpersecutionstowhichtheJewshavebeensubjectthroughouthistorywhenthousandsofthemostfaithfulperished.Facedwith suchadisasterbothtorighteousindividualsandtothenationasawhole,theonlywaybeliefinGod'slovecouldremaincrediblewastoaffirmfaithinthepowerof Godtoraiseupthedead.Inourday,theHolocausthashadacomparableeffect,leadingsomeJewstofeelthatbeliefinGod'sgoodnessisnolongerpossible,and that,touseStendhal'sepigram,'TheonlyexcuseforGodisthathedoesnotexist.'Butforthosewhosefaithhasheld,abeliefinalifeafterdeathhasbeen reemphasizedasanessentialcomponentofanintelligiblefaith.RabbiCohnSherbokwrites:'ThebeliefintheHereafterhashelpedJewsmakesenseoftheworldasa creationofagoodandallpowerfulGodandprovidedasourceofgreatconsolationfortheirtravailonearth.'WithoutsuchabeliefJewswould'facegreatdifficulties reconcilingthebeliefinaprovidentialGodwhowatchesoverhischosenpeoplewiththeterribleeventsofmodernJewishhistory.'11Onthisview,beliefinafuturelife becameanessentialcomponentofanintelligibleunderstandingofJewishbeliefinGod,bothbecauseoftheproblemofevilandalsoforthefulfilmentofthelifeofthe righteousindividual,for(asCohnSherbokmakesclear)the'qualificationforentrancetoheaven(GanEden)istoleadagoodlifeinaccordancewithGod'slaws.'12 LifethereforehasmeaningforboththeindividualandthecommunitybecauseitisdirectedtowardsthetranscendentgoalofthekingdomofGod. 8 TheMeaningofLifeandDeathinIslam IslamshareswithJudaismandChristianitythebeliefinanallpowerful,allknowingandallcompassionatecreatorGod.Consequently,fromaphilosophical standpoint,theexistenceofevilisasmuchachallengeinIslamasintheotherAbrahamicfaiths.Religiously,however,theissueisfarlesspressing.Akeyrequirement foronetobeagoodMuslimisanattitudeofsubmission(Islam)towhatGodhasdetermined.HencetoquestionwhatGodhasdone,ortofeelaneedto'justify'God inthe

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faceofevilindicatesanonsubmissive,nonIslamicattitude.Ontheotherhand,iftheproblemisraisedasanissuebyanonMuslim,adefenceofGod'swayscan certainlybepermitted.Inconstructingsuchadefence,aMuslimwouldtakeforgrantedthattheframeofreferencewouldincludetheHereafter(AlAkhirah).Thereis scarcelyachapterintheQur'an*whichdoesnotrefertotheHereafter,andinthebookasawholetherearenofewerthan113referencestoit.AsSulaymanNyang argues,'ItisnecessarytoseethebeliefinafuturelifeasintegrallyrelatedtothetotalIslamicviewoflifeintheSublunarworldincludingman'sroleinthisworldandthe significanceofhisfaith.'13TheQur'anmakesclearthatmanwasnotcreatedforsport,buthasaseriousmissiontoundertake.14 IntheIslamictradition,ourlifeinthissublunarworldisexplicitlyseenasapreparationfortheHereafter.WewillultimatelybeaccountabletoGodforthewaywe havelived,sowhatwedomattersbecauseitshapesthepersonswebecome.ThedistinguishedIslamictheologianSalihTugexpressesthematterthus:

Justasfromdustmanhasevolved,fromthedeedshedoesthehighermanisevolved...Thehumanframeisonlyavehiclebywhichthesoulmustdevelopitself.Thesoulhasto evolvebyitsowneffortfromthecrudeformofsimpleconsciousnesstoacertainstageofspiritualdevelopment...Ourpresentlifeisapreparation.Itisnecessarytobringoutour facultiesandraisethemtoacertainstageofevolutionduringourearthlysojourn.Thenaloneshallwebefitforprogressinthelifeafterdeath...butwecanenterthatlifeonlyif wehavemadeourselvesfitforitinourphysicallifetime.15

Thisseemsaclearendorsementoftheviewthatthemeaningofthislifeistobeunderstoodinthecontextofa'soulmaking'theodicy. 9 TheMeaningofLifeandDeathinBuddhism ThestartingpointforallBuddhistthoughtistherecognitionthatsufferingexists.TherealityofsufferinginthislifeistheessentialpresuppositionofeachoftheFour NobleTruthsfromwhichtheBuddhistphilosophyoflifederives.MoreoverBuddhismdoes

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notbelieveinacreatorGodwhosewaysneedtobe'justified',nordoesitthinkincategoriesofa'soul'whichneedstobe'made'.Atfirstsight,therefore,itmight seemthattheBuddhistapproachtolifeanddeathwasverydifferentfromthatofthethreeAbrahamicreligionswehavesofarconsidered.However,ifwelookmore closelyintotheBuddha'steachingwemayfindthattheunderlyingattitudetolifeanddeathismoresimilartothatoftheotherreligionsthanmightatfirstsightappearto bethecase. TheBuddhawastotallyclearthattoseekfulfilmentthroughamaterialisticorhedonisticapproachtolifewasthoroughlymisguided.Oldage,diseaseanddeathwill bringtonaughtallworldlyhopes.TheBuddha'sprimaryresponsetotherealityofsufferingwastoteachustoovercomeourfearoftheunsatisfactoriness,sufferingor dukkhaoflifebyrecognizingthetransienceandimpermanenceorannicaofallthings.Hebelievedthatifwereallyunderstoodoursituation,andachievedtrue 'enlightenment'aboutthenatureofreality,wewouldnotattachoursenseofidentityoroursearchformeaningtoanythingastransitoryandinsubstantialasourpresent experienceofselfhoodorthefleetingdesireswhichflowfromoursensoryawarenessinthepresent.MuchoftheBuddha'steachingisessentiallyconcernedwith helpingpeopletocopewithsufferinginthehereandnowbyhavingatruerinsightintotherealityofthehumansituation.Thishasledmanytointerprettheoriginal Buddhistmessageasessentiallypracticalanddowntoearth,andasunconcernedaboutthenatureofanysupposedfuturelife,concerningwhich,havingnoreliable knowledge,weenterinsteadintoawildernessofspeculationwhichtheBuddhaurgedustoavoid. HoweveritismistakentosupposethattheBuddha'sthoughtwaslimitedtothislifealone.AsEdwardConzepointsoutinhisprefacetothesectionofhiseditionof Buddhistscriptureswhichdealswithotherworlds,'ThehorizonofBuddhismisnotboundedbythelimitsofthesensoryworld,theirtrueinterestsliebeyondit.'16The Buddhahimselfsawhumanlifewithinacosmicperspectiveinwhichwepassthroughasuccessionoflivesonouronwardjourneytowardsenlightenment.Theultimate deathlessstateofNirvanawillbereachedonlywhenwetranscendthecycleofrebirth,andfinallyriseabovetheselfcentrednessofourpresentcondition.

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10 WhattheBuddhaMeantbyHis'NoSelf'Doctrine OneofthemostbasicBuddhistbeliefsisthedoctrineofAnatta,usuallytranslatedasthe'noself'doctrineandinterpretedasatotalrepudiationoftheconceptofthe soul.However,everydenialhastobeunderstoodinrelationtowhatisbeingdenied.TheBuddhamadeitabsolutelyclearthatwhatheopposedwastheHindunotion ofasouloratmanasaneternal,unchangingessence,existingindependentlyofothers,unaffectedbythetraumasoflifeandproceedingthroughasuccessionoflives. Thisatmanshouldideallybeunaffectedbytheclaimsofourfleshlynature,andasceticpracticesandanidealofkeepingapartfromsocietyhaveevolvedtoaidthis independence.ThispictureofanimmortalchangelessselfattheheartofourbeingwasanathematotheBuddha.'Thespeculativeviewthat...Ishallbeatmanafter death,permanent,abiding,everlasting,unchanging,andthatIshallexistassuchforeternity',isnotthatwhollyandcompletelyfoolish.17Itseemstomethatthe Buddhawasabsolutelyrightinhisdenial.ModernphilosophyofmindhasincreasinglymovedinthedirectionpioneeredbytheBuddhaover2,000yearsago.For example,DerekParfit'sinfluentialworkReasonsandPersonsconcludeswithachapterontheBuddha'sviews.18Ithasbecomeincreasinglyclearthatwecannot identifyourselveswithanunchangingself.But,asJohnHickhaspointedout,itisnotrealistictoargue'noimmutable,eternal,independentself,thereforenoself.'19In thesoulmakinghypothesisitisaxiomaticthatthereisnounchangingsoul,butratherthatweareconstantlychanginganddevelopingaswerespondtothechallenges andstimulioflife.Onlyadynamicconceptofselfhooddoesjusticetoexperienceorempiricalreality.Itseemstome,therefore,thatthereisnonecessaryclash betweenasoulmakingtheodicyandthenoselfdoctrinewhenweexaminetheterminologyofboththeoriescritically.Bothrepudiateanunchangingselfhood,and bothaffirmthatwhatwebecomeistheproductofwhatwedo.Ironically,therefore,IwouldarguethatinrealtermstherearegreaterproblemswithfittingHinduism intoasoulmakingtheodicythanBuddhism.ForthoughHinduismundoubtedlyattachesgreatimportancetothesoul(atman)yetthepictureofitasanunchanging entityraisesfundamentalprob

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lems.However,ifwemoveontoconsidertheconceptofKarmainbothHinduismandBuddhismwemaymovetowardsaresolutionofthisdifficulty. 11 TheodicyandKarma: TheHinduandBuddhistUnderstandingofLife NeitherHinduismnorBuddhismisconcernedwithahumanrelationshipwithacreatorGod,whichliesattheheartofbeliefinafuturelifeintheJudaeoChristian Islamictraditions.However,bothareconcernedwithbeliefinamoralorderunderlyingallthings,whichfindsexpressioninthedoctrineofKarma.Theessenceofthe lawofKarmaisthatwhatweareistheproductofwhatwehavebeen,andwhatweshallbedependsonwhatwedonow.Historicallythisdoctrinewasshapedina contextofbeliefinrebirthorreincarnation,leadingthroughasuccessionoflivestotheultimategoalofbeingonewiththeultimate(moksha)orenteringthedeathless stateofNirvana.Hence,ourbehaviourinthislifehascosmicsignificanceandmeaning,sinceitdeterminesourfuturedestiny.Isuggestthatthisdoctrineis,inits practicaleffect,analogoustothesoulmakingtheodicyinthethreetheisticreligionswehavediscussed.Bothdoctrinesseelifeashavingsignificancewithinawider frameofreferencethanthislifealone,andbothpossessakeencommitmenttoanunderlyingmoralorder,sothatwhatwedomatters,whether'tofitusforheaven'or tofulfilourkarmicdestiny.Ineachreligion,theultimategoalwhichgivessignificanceandmeaningtoourstrivingisatranscendentone.InJudaism,Christianityand IslamitistofindourultimatedestinyintheHereafterwithGod.InBuddhismitistoachievethedeathlessstateofNirvana,andinHinduismultimatelythehopeisthat weachieveliberationormokshafromthecycleofreincarnation.Inallcases,thewaysinwhichwerespondtothechallengesoflifeinthisworldarethemeans wherebyweshapeourpersonhoodorcreateandfulfilourKarma,andhencegrowmoretowardswhatweoughttobe. 12 AffirmingthisWorldAlso Itisfrequentlysuggestedthatbeliefinatranscendentdestinyleadspeopletodespisethisworldortakeitlessthanseriously.

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Thiscanofcoursesometimeshappen,andworldrenunciationistobefoundinmanyreligioustraditions.Butthecentralthrustofanysoulmakingtheodicyorany doctrineofKarmaistoaffirmtheimportanceofwhatwedonow.Foralthoughwhatthereligionsteachisdirectedtowardsthefulfilmentofatranscendentdestiny, whatisactuallyprescribedforoureverydaylifeonearthis,atleastforthelayperson,theconscientiousfulfilmentofthedutiesandobligationsofeverydaylife.Saints inallthreetheistictraditionshavewarnedagainsttheideathatoneoughttodogoodinordertowinheaven.Rather,virtuousactionsshouldbedonefortheirown sake,becausetheyarethemselvesgoodandcontributetothewellbeingoftheindividualandsocietyinthehereandnow.IfGodisperceivedtobealovingandgood creatoroneoughttobeabletoconcludethatcreationisforthebenefitofthecreature.Consequently,exploringwhatis'natural'tohumanitybecomesanappropriate basisformoraljudgement,andattendingtowhatcanbeshownempiricallytoenhancehumanfulfilmentislikewiselegitimate.Hencealthoughthereisofteninpractice aclashbetweentheethicalthinkingofecclesiasticalhierarchsandsecularthinkers,inprinciplesuchclashesshouldnotoccur.AsGrotiusarguedlongago,atrue naturallawethicoughttobecapableofbeingworkedout'etsiDeusnondaretur'(asifGodwerenotapremise).20Likewise,ifweturntoBuddhismtoexemplifythe religiouswisdomoftheEast,wenotethatthewaythehouseholder(asdistinctfromthemonk)canobtaingoodKarmaistofollowthebasicethicalprinciplesofthe Dharmaandfulfilallone'sobligationstofamilyandsociety.Inpracticalterms,thebehaviournecessaryforbecoming'fittedforheaven'or'fulfillingone'sKarma'isalso thebehaviourbestsuitedtothefullrealizationofone'spotentialasahumanperson. 13 ThePracticalImplicationsofSeeingLifeandDeathintheLightofanEternalHope Ifwebelievethatwhatwedomattersbecauseitshapeswhatwebecomewewilltendtohaveapositiveattitudetowardsthechallengesoflife.Thesearethemeans bywhichwegrowanddevelop.Thus,ateachdifferentstageoflife,onewouldseektothrowoneselfintothetasksanddutiesappropriatetoit.Aconscientious personwilltakeeducationseriouslyinyouth,not

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simplyintermsofacademicachievementbuthopefullytheallroundchallengeofnurturingwhatevertalentsonehas.Thesemayincludethedevelopmentofathletic, musical,aestheticororganizationalabilities,aswellassimplyintellectual.Thenonemaymoveontothetasksentailedbyone'sjoborprofession,andperhapsalso takeonadditionalcivicorsocialconcerns.Formanytherewillcomefamilyresponsibilitiesandthecaresandresponsibilitiesofbringingupchildrenorcaringforaged parents.Forsometheremaybeofficeinavoluntarysociety,pressuregroup,culturalorpoliticalorganizationorchurch.Allthesethingsmayprovidepeoplewitha feelingofmeaningtotheirindividuallivesandgivethemtheirsenseofworthanddignity.Suchapositiveattitudetolifeisagoodinitselfandfromahumanist perspectivemightbeselfchosenasawaytoattributemeaningtoone'sdailyactivity.Butfromareligiousperspectivethemeaningisallthericherforbeingsetina cosmicframeworkleadingonwardstothefullnessoflifeintheworldbeyond. Notes

1 2

Ecclesiastes3:12,5:18,9:9.

FordocumentationofthisseePaulandLindaBadham,DeathandImmortalityintheReligionsoftheWorld(NewYork,ParagonHouse,1987)andPaul Badham,'Deathandimmortality:towardsaglobalsynthesis',inD.CohnSherbokandC.Lewis,BeyondDeath(London,Macmillan,1994).
3 4 5 6 7 8 9

AntonVanderWalle,FromDarknesstotheDawn(London,SCM,1984),11. 1Corinthians15:19. JohnHick,'AnIrenaeantheodicy',inPaulBadham,AJohnHickReader(London,Macmillan,1991),94. M.B.Forman(ed.),TheLettersofJohnKeats(Oxford,OxfordUniversityPress,1952),3345. JohnHick,DeathandEternalLife(London,Macmillan,1976),partV. KeithWard,TheBattlefortheSoul(London,Hodder,1985),14950. 2Samuel14:14,Job20:7,Genesis2:7,Isaiah14:11. Job42:15.

10

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11 12 13 14 15 16 17 18 19 20

DanCohnSherbok,'DeathandimmortalityintheJewishtradition',inP.andL.Badham,op.cit.,34. CohnSherbok,op.cit.,26. SulaymanNyang,'TheteachingoftheQur'an*concerninglifeafterdeath',inP.andL.Badham,op.cit.,72. Qur'an21:1617. SalihTug,'DeathandimmortalityinIslamicthought',inP.andL.Badham,op.cit.,878. EdwardConze,BuddhistScriptures(Harmondsworth,Penguin,1959),221. CitedinW.Rahula,WhattheBuddhaTaught(Bedford,GroupPress,1959),59. DerekParfit,ReasonsandPersons(Oxford,OxfordUniversityPress,1986). JohnHick,'Response',inStephenDavis,DeathandAfterlife(London,Macmillan,1989),178. CitedinF.Copleston,HistoryofPhilosophy(NewYork,ImageBooks,1963),III,part2,p.145.

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12 DyingandLiving: SomeContemporaryPhilosophicalConsiderations
JohnDaniel Thischapterdiscussestwoissues,orperhapstwosetsofissues.ThefirstconcernswhatIcallourconsciousnessofdeathassuch:istheresuchaphenomenon,andis therereasontofeardeathassuch?Thesecondconcernsthecontributionthataperson'sdeath,thewayheorshedies,canmaketoourjudgementonhisorherlifeas awhole. Deathwillbediscussedthroughoutasthecomingtoanendofahumanlife.Itistruethat,asaconsequence,attitudestowardsdeathasaturningpointinlifewillbe excluded.Butattitudestowardsdeathasanendingcanoverlapwithattitudestowardsitasaturningpoint.Forevenifdeathisaturningpoint,somethingcomestoan endinitandifitisaturningpoint,itisonethatcanarouseemotionssuchasfearandapprehensioneveninbelievers. 1 Everyoneofusknows,insomesense,thatheorshewilldieonedayanditisoftenclaimedthatoneoftheprincipalsignsoreffectsofthatknowledgeisthefearof death.Butthisspecificationofthefearmayconcealdifferences. Sometimesanindividualknowsthatheorsheisgoingtodie,inthesenseofknowingthatsomeprocesshasbegunthatwillcausedeathwithinafairlydefiniteperiod oftime.Thisknowledgeusuallyinvolvesabeliefabouthowheorshewilldiethatis,aboutwhatwillcausethislifetocometoanend.Onsuchoccasionsfear,and theefforttoovercomefear,arefamiliar

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phenomenaalthoughitisworthbearinginmindthatotheremotions,suchasangeranddespair,arejustascommon.Butthereisadifferencebetweensuchknowledge andmyknowledgethatIwilldieoneday.Thislatterformofknowledgecontainsnoreferencetoaspecificcausalprocessortoafairlydefiniteperiodoftime.Inthe lightofthisdistinction,manyhaveclaimedthatthebareideathatIwilldieonedayiscapableofarousinginmeemotionsandattitudessuchasfear,angerordespair. Acceptingthatsuchemotionalphenomenadooccur,Iwillsaythattheirobjectisdeathassuch.Writersaboutattitudestodeathhavealwaystendedtoconcentrate ontheresponseoffear,andIwilldothesameinwhatfollows. Freudnotedphenomenathat,inhisopinion,revealthefearofdeathassuch(althoughhedoesnotusethatexpression).1 Forexample,eventhoughwesaythat everyonedies,webehaveasifitwerenottrue.Inaperiodofpeaceeverybodyisveryreluctanttorecognizeexplicitlyandsincerelythatheorshewilldieoneday. Freudconcludedthatontheunconsciouslevelweallbelieveourselvesimmortal.Andalthoughwesaythateverybodymustdie,ourconductsaysotherwise.Forwe payparticularattentiontoanyfactorthatcanmakeaparticulardeathappeartobeaccidentalandaftersomeone'sdeathwepraisethatindividualasifdyingasheor shedidwereagreatachievement.Ourgeneralfearofdeathalsocomesoutinourreluctancetotakemortalrisks,anattitudethatlimitsthealternativecoursesof actionthatwearewillingtoconsiderseriously,andleadstounadventurous,superficialandboringlives.Thevalueoftheseargumentsvaries.Forexample,holdingthat everyonemustdie(thatis,someday,somehow),isperfectlyconsistentwithholdingthatitwasanaccidentthatsoandsodiedwhenhedid,orthatdyingashedid (bravely,withdignity,andsoon)wasadmirable. Althoughitseemstobeobviousthatpeopledofeardeathassuch,somephilosophershavearguedthatsuchanemotionis,strictlyspeaking,impossible.For philosophicalreasons,deathcannotbethetrueobjectofthefearinthoseexperiencesthatwemisdescribeitas'fearingdeathassuch'eventhoughthetrueobjectis linkedtodeathinaspecificway.OnephilosopherwhohasarguedthusisJamesVanEvra.2 ThecoreofVanEvra'sargumentishisdefinitionofdeathasabsenceofexperiences.Ifdeathistheabsenceofexperiences,itis

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notanobjectofconsciousness,andconsequentlywecannotfearit.Butthisreasoningisalreadynotprobative.Foritreliesontheprinciplethatnothingcanbean objectofconsciousnessunlessitisapossibleexperience.Thisprincipleiscontradictedbynumerouscounterexamples.IfIseeatable,thetableisanobjectof consciousnessformeeventhoughbeingatableisnotapossibleexperienceforme.PerhapstheclosestthatIcouldgettothisexperiencewouldbetoexperience beingusedasatable,ashappenedtoservantsformerlyintheroyalcourtofThailand. Butthissimpleobjectionisalsosimplistic.Afterall,VanEvraisdiscussingthestatedescribed(loosely,inhisview)astheindividual'sfearofhisorherowndeath. Anditisplausibleenoughtosaythatnoonecanfearsomefatethatcannotbeimaginedasbefallingone.Butinorderforhisoverallconceptionofthewayinwhich deathentersconsciousnesstowork,VanEvraneedsamorerestrictiveclaim:thatnoonecanfearanyfatesuchthatheorshecannotimaginefromtheinsidewhatit wouldbeliketosufferit.Ifthisclaimisaccepted,thenofcoursetheoverallconceptionsucceeds,sinceitwouldbeselfcontradictorytoofferaninsider'sdescription, asitwere,ofastatedefinedasbeingwithoutaninside.Ifthereisaninsider'sdescriptioninthisarea,then,accordingtoVanEvra,itisthedescriptionoftheprocess ofdying.Whenwespeakoffearingdeathassuch,whatwearereallyspeakingaboutisthefearofthisprocessassuch.Thecorrectexpressionofthisfearisnot 'OnedayIwilldie,'but'OnedayIwillbedying'. Butifnobodycanimaginehisorherdeathinthesensethatnobodycanimagine,fromtheinside,himselforherselfbeingdead,thenwhatisthesenseoftheexpression 'theprocessofdying'whenwespeak,asVanEvradoes,offearingtheprocessofdyingassuch?Foreveryonewhoexperiencesthatfearfearstheprocessofhisor herowndying.VanEvradealswiththeproblembyusingWittgenstein'sremark,'ourlifehasnoendinjustthewayinwhichourvisualfieldhasnolimit'.3 Wecannot seethelimitofourvisualfield,sinceseeingsomethingimplieslocatingitwithinthelimitsofourlife.AsWittgensteinsaidinthesamepassage,'Deathisnotaneventin life:wedonotlivetoexperiencedeath.' VanEvra'spointaboutthelimitofourexperiencesmaybeputthus:thelimitofourexperiencesissomethingotherthanthefirststatethatwecannotexperienceafter wehavelivedrather,

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thelimitispresent,asitwere,insomeofourexperiences.Forexample,asIreadthelettersonanoptician'schart,beginningwiththelargestandmovingtowardsthe smallest,Icomecloserandclosertothelimitofmyabilitytorecognizetheletters,andIknowit.HowdoIknowit?Not,absurdly,bycomparinginmymindthesize ofthelettersIrecognizewiththesizeofthefirstletterIcannotrecognize.IknowitbyvirtueoftheincreasingdifficultyofrecognizingthelettersIdorecognize.Itis thisprogressivefeatureofeachsuccessiveexperiencethatproducestheconceptofalimit,ofaletterthatistoosmallformetorecognize,andnotanyimpossible directexperienceofsuchaletter.Asthesickindividualweakens,hisorherexperienceisofcomingcloserandclosertothelimitofallconsciouspowers.Itisthe experienceofacomprehensiveandprogressiveweakeningthatproducestheconceptofthelimitofallexperience.Whenwespeakoffearingdeathassuch,thetrue objectofourfearistheprocessofdyingassuchthatis,aseriesofexperiencesthattendstowardsthecessationofallexperience,astowardsalimit. AccordingtoVanEvra'sargument,accordingly,weacquiretheconceptofdeaththatentersintotheexperiencewemisdescribeas'fearingdeathassuch'bya processofextrapolationfromaspecificsortofseriesofexperiences.Justasscientistsconstructtheconceptofzeroforceonthebasisoftheconceptofdiminishing force,sotheordinaryindividualcanconstructtheconceptofdeath,ofmaximumweakness,onthebasisofincreasingweakness.Ourfearofdeathistobetotally reducedtoourfearofthesortsofprocessesofwhichdeathisthelimit. Nowanyaccountofthefearofdeathmustexplainwhywearesomuchmoredisturbedifwebelievethatwearedyingthanifwemerelybelievethatour consciousnessisgettingfeebler.4 'Iamdying'isnotequivalentto'Iammovinginthedirectionofdeath.'Fortheformer,butnotthelatter,iscontradictedby'ButIwill recover.'AnditwillnothelpVanEvratosaythat'Iamdying'isequivalentto'IammovinginthedirectionofdeathandIwillgetthere.'Forhiswholeanalysisof deathasalimitwasinspiredbyourinabilitytoimagine,frominside,beingdeadsothat,fromhisstandpoint,talkaboutarrivingthereoughttobeequallyunintelligible inthiscontext. Inanycase,itseemsmistakentolinkemotionsingeneralwiththepowerofimaginingfrominsidewhatitwouldbeliketodoor

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tobedonetothusandthus.Thelinkwillbemostplausibleifwetakeitthatthethesisisthatmyexperiencingfear,forexample,necessarilyinvolvesmyimagining,from inside,myselfsufferingsomeharm.Butifbruteanimalscanfeelfear,doesthatstateinvolvetheirimagininganything,whetherfrominsideoroutside?If,inorderto minimizeareasofconceptualdisagreement,westicktothecaseofhumanfear,thenweoughttobearinmindthatmyfearcaninvolvemythinkingofsomethingas dangeroustome,andthatwhereassuchthinkingmaytakeanimaginativeform,itdoesnothaveto.Neitherisitplausibletoarguethatafear,tocountasanemotion, mustbeimaginative:inmyterror,ImaybefartoopreoccupiedinavoidingthesourceofdangertohaveanycapacityleftforimaginingwhatwouldhappentomeifI failed. Iconcludethatthisattempttoshowthatthereisnot,strictlyspeaking,suchathingasfearingdeathassuchisafailure.Wearefreetodiscusssomefamiliarfacts withoutbeingmadetodoubtwhetherwearedescribingthemcorrectly.Forexample,aswassaidabove,ourattitudetowardsaseriesofexperienceschanges radicallyifwebelievethattheywillculminateindeath.ThomasNagelhassaid,'...Ishouldnotreallyobjecttodyingifitwerenotfollowedbydeath.'5 Another phenomenon:occasionallytheideathatheorshewilldieonedaycomestoaperson'smindwithshockingandfrighteningforce.Itcannotbeheldthatthiseffect alwaysderivesfromideaspresentintheexperienceaboutwhen,orinwhatway,heorshewilldie.Somemightobject,holdingthatinsuchanexperiencethoughts abouttheproximityofdeath,oraboutthepainofaspecificwayofdying,affectusfromanunconsciousorsubconsciouslevel.Butevenso,Nagel'spointwouldretain itsforce:wouldthesesubterraneanthoughtsbeaspowerfuliftheyweren'tthoughtsinvolvingdeath?Theywouldnotandthatisenoughtoshowthatthinking'Iwill die'makesanessentialcontributiontothefear. Letusaccordinglyacceptthattherearesuchphenomenaasattitudesandemotionswhoseobjectisdeathassuch.Theonethathasattractedmostattentionofthe fearofdeathassuch.Butthisfearcanseemhardtounderstand:whatistheretofearindeath,ifdeathisnonexistence? CenturiesagoEpicurusarguedthattherewasnothingtofearindeath:'Therefore...deathisnothingtous,seeingthatwhen

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weexistdeathisnotpresent,andwhendeathispresentwedonotexist.'6 Theargumentisadilemma:eitherwearedeadoralive.Ifwearealive,deathisnotpresent (tous)andifwearedead,wearenotthereforanythingtobepresenttous.Butwhatworriespeopleisnotthatdeathisnotpresent,butthatdeathwillbepresent. TheargumentasawholeisruinedbyEpicurus'failuretoseethatthenonbeingtocomeispresenttopeople,inthesensethattheysupposethat,deathbeingnon being,theyhavereasontofearit. ButalthoughEpicurus'argumentfailsasareasonedattempttoassuagethefearofdeathassuch,hisfollowerLucretiusmadeapointthatenablesmorelighttobe thrownonthenatureofthisfear,asNagelhaspointedout.7 Arguingthatnonexistenceisnothingtofear,Lucretiusclaimedthat,ifthefearofdeathassuchisthefear ofnonexistence,thenweoughttofindourantenatalnonexistencejustasdisturbingasourpostmortemnonexistence.Thisisanimportantpointbuttheright conclusiontodrawisthatceasingtobeiswhatwefearinfearingdeathassuch,notthatthefearofdeathassuchisirrational.Ifso,thenunderstandingthisfear dependsonunderstandingwhatthereistofearinceasingtobeassuch.IbeginwithsomepointsmadebyThomasNagel.8 Nagelsaysthatdeathisamisfortunetoamanbecauseitdepriveshimofhislife,notbecauseitisthebeginningofaspecificstateofthatman.Forhim,theessential misfortuneistheloss,notwhatfollowstheloss.Ifwesawthestateofbeingdeadasamisfortune,wewouldhavetosaythatShakespeareismoreunfortunatethan Proust,sincehehasbeendeadforcenturiesratherthandecades. Explainingthemisfortuneofdeathintermsofthelifeofwhichthedeadindividualwasdeprivedraisesaproblem,saysNagel,aboutthedeathofoldpeople.Keats's deathattwentyfivewasmoreofalosstoKeatsthanTolstoy'sdeathateightytwowastoTolstoy,becausethepossibilitiesofcontinuedlifeweresodifferentinthe twocases.Ifso,wasdyingsuchalosstoTolstoy? Nageldealswiththeproblembyachangeofperspective.IfweconsiderTolstoy'sdeathfromoutside,itseemsthatitwasnotmuchofalosstohim,becausehe wouldnothavelivedmuchlongeranyway.Butifweconsiderhisdeathfromhispointofview,frominside,thingslookverydifferent.Nagelsays:

Page189 Aman'ssenseofhisownexperience...doesnotembodythisideaofanaturallimit.Hisexistencedefinesforhimanessentiallyopenendedpossiblefuture,containingthesame mixtureofgoodsandevilshehasfoundsotolerableinthepast...hefindshimselfthesubjectofalife,withanindeterminateandnotessentiallylimitedfuture.Viewedinthis way,death,nomatterhowinevitable,isanabruptcancellationofindefinitelyextensivepossiblegoods.9

Thisaccountofhowanindividualconceivesthemisfortuneofdeathreliesonanotionofapossiblefutureofwhichheorshewillbedeprived.Thecontinuationoflife is,intheindividual'soutlook,apossibilityinthesenseofbeingimaginableorconceivablewithoutcontradictingthedescriptionsunderwhichheorshehasalwaysor mostlyfoundheractivitiestobeworthwhileinsomesenseorother.Onemightsaythatitisthesortofpossibilitythatcorrespondsto'Icouldgoondoingthisforever', saidasanexpressionofsatisfaction.Butallthatneedstobesaidhereisthatanindividualmaythinkofhisorheractivitiesasworthwhileinwaysthatdonotimply indefiniteextensibility.Forexample,onemightthinkofone'slifeintermsofasetofpurposessuchthat,iftheyhavebeenachieved,thereisnolongeranyneedtogo onliving.TheNuncDimittis10isanexpressionofanattitudeofthisgeneraltype,whichmayalsotakenonreligiousforms:forexample,peoplemightfeelthatthey hadlivedtoolong,inthesensethattheynolongerhadaroleintheircommunity,whoselifehadbynowpassedthemby,owingtotheriseofyoungergenerations. Suchasenseofrelegationwould,inacertainway,notbeamerelycontingentmatter,butsomethingthatcouldnotbealteredwithoutveryprofoundchangesinthe subjects'conceptionofaworthwhilelife.ItistruethatsuchattitudesimplyamoreglobalviewonlifethantheattitudethatNageldescribes,andthattheycancoexist withpositiveevaluationsofactivitiesthatarenotatalltightlyintegratedintothem.Nevertheless,giventheglobalperspective,suchactivitieswouldbepartoflife's smallchange,andtowishforacontinuationoflifefortheirsakeswouldbeattheleasttounderminetheoriginalperspective. Inhisdescriptionoftheattitudeforwhichdeathisnecessarilyamisfortune,Nagelsaysthatahumanbeing'findshimselfthesubjectofalife,withanindeterminateand notessentiallylimited

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future,'.11BernardWilliamshasdiscussedthequestionwhetherlivingforeverasanearthlybeingcouldsatisfyanyhumandesire.12Atfirstsightitlooksasifthe answermustbepositive,andforasimplereason.Ifwesetasidecaseswheredeathisbetterthanlifeforsomebody,wecansaythatdeathisalwaysamisfortune, becauseitisalwaysbettertolivethantodie.Butdoesn'tthatleadimmediatelytotheconclusionthatitisbettertolivealwaysthantodie? Itdoesnot.Thepremise'Atanytime,itisbettertolivethantodie'doesnotentail'Itisbettertoliveatalltimesthantodie.'Weseethisifwecomparethestatement 'Atanytimeitispleasanttotasteicecream(i.e.atthattime)'with'Itispleasanttotasteicescreamatalltimes.'Theformerdoesnotentailthelatterbecausetasting icecreamataparticulartimeisnotthesameactivityastastingicecreamatalltimes,orallthetime.Inthesameway,thelivingreferredtointhestate'Atanytimeitis bettertolivethantodie'isnotlivingatalltimes,orlivingforever.InthespiritofNagel'sapproach,thestatementmayberephrasedas'Atanytimeitisbettertolive todothatwhichIwantatthattimetodothantodiebeforeIcandoit'.Thisrephrasingbringsoutthepointthatmyreasonforliving,thatInowwanttodosuchand such,doesnotcommendtomeafuturebeyondtheendoftheperiodrequiredtofulfilmydesireitdefinitelydoesnotcommendtomeanendlessfuture. Williamsarguesthatwecouldnothaveareasonforlivingahumanlifeforever.Itfollowsthatourhumanlifeismeaninglessunlessweseeitassomethingthatwill cometoanend.Ifwethinkaboutit,weshallseethatanendlesslifecouldnotsatisfyanydesirepresentinbeingssuchasweare.ButwhatreasonsdoesWilliams haveformaintainingthis? HisargumentreferstoaplaybytheauthorKarelCapek,inwhichisshownthepredicamentofElinaMakropulos,whois342yearsoldorwho,ifwecountin anotherway,hasbeenfortytwoyearsoldforthreecenturies.Bynowherlifeisnothingbut'boredom,indifferenceandcoldness'.Thereisnojoyinher,andno differenceforherbetweensongandsilence.Williamsarguesthatherconditionisnecessary,inthesensethatitisnotpossibletodescribeahumanbeingwhowould notbeaffectedinthesamewaybylivingforever. Williams'sargumentcontainstwothemes,oneconcerning

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boredomandtheothertheconceptofcharacter.Totakeboredomfirst:peoplegetboredwithdoingthesamethingoverandoverandafteralongenoughperiodis thatnotwhatlifewouldbeforus?Butthisistoosimpleanargument.Theboredomofrepeatingthesameactiondependsonsuchfactorsasthenatureoftheaction andtheagent'sfreedomtodecidewhenexactlyitisrepeated.Itmaybethatintellectualstendtooverlookthisbecausetheyareespeciallypronetothinkthatthe persistenceofourinterestinsomethingdependsonourabilitytodiscoversomenewaspectofiteachtimewereturntoit.Butitisnottruethatourinterestinafamiliar actionorobjectisdirectedoneachoccasionatsomenewaspectofit.Forexample,someonemightchooserepeatedlytolistentothesamepieceofmusic,becauseit satisfiessomedesireoremotionthatarisesrepeatedlyinhimorher.Itmightbeobjectedthatsuchawayoflisteningtothemusicistoopassivetobecalledtakingan interestinit.Evenifthisisright,itisnotsointolerableanactivitythatitcouldbecalledboring.Itistruethatthereisinterestmotivatedbycuriosity,whichonlynovelty cansatisfybutitisnottruethattheonlyalternativeisboredom. ThesecondthemeinWilliams'sargumentisthatofcharacter.IfElinaMakropulosweretolookbackatthefirstthreecenturiesofherlife,shemightseethatinher relationswithothersshehadbeendoingthesamethingsoverandoveragain.Numerousrepetitionsofthesamesortofrelationshipwouldgraduallytransformwhat hadoriginallybeenamatterofactingintoamatterofaccepting,ofputtingupwiththesamerelationship,withthesamelimitations. Williams'sargumentisverycondensed,butIbelievethatitcanbeunderstoodasfollows:asElinaMakropulosgoesthroughthesamesortofrelationshiptimeandtime again,shecomestoforeseewithincreasingclarityhowitwilldevelop.Knowingthataboutherself,shecomestoseeheractionsinanewlight,astheactionsofone whohassubmittedtoafamiliarsetoflimitations.Beforetheybecamesorepetitivetheyexpressedadesireforarelationshipofthesortinquestionbutaftera sufficientnumberofrepetitionstheyexpresstheresignationofonewhohassettledforanunimaginativeroutine. Butwhat,asksWilliams,ifshehasneverrepeatedthesamerelationship?Thenitmustbesaidthatshehasnosettledcharac

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ter,andthatnoexperienceisveryclosetoherheartthereisadistancebetweenherandheractions. SoweseethatWilliams'squestionisthis:forwhatsortofcharactercouldeverlastinglifebeaworthwhileaim?Ifsomeonehasasettledcharacter,thencontinuingfor evertoactinaccordancewiththatcharacterwillbringanewandunfavourableselfassessmentandifheorshehasnosettledcharacter,andconsequentlyno comparativelyspecificsetofvalues,towhatpartofhimorhercouldlivingforeverappeal? Thefirsthornofthisdilemmapresupposesanindividualwhoassesseshisorherowncharacter,asthatisrevealedbyhisorheractions.Noteverybodyisasself consciousasthis.ItistruethatWilliams'squestionis,'Inthenameofwhatcouldlivingforeverappearattractivetosomeone?',andthatonePrimafaciepossible answercouldbe'Inthenameoftheagent'sselfimage,ofhisorherconceptionofhisorhercharacter'.Williamsarguesagainstthisreply,onthegroundthatendless repetitionmustchangetheselfimagefortheworse.Butisthatnecessary?Anagentwho,onreflection,discoversthatheorsheisrepeatedlydoingthesamesortof thingmightthinkwithsomesatisfactionthatheorshehassettleddesiresandreliablewaysofimplementingthem.Williamswoulddescribethisasbecomingresignedto one'slimitations.Itistruethatthethought'Itwillbedifferentthistime'willbecomeincreasinglydifficulttotakeseriously.Butwhymust'Itwillberatherlikelasttime?' necessarilybealoweringthought?Itseemsthatitwouldbenecessarilysoonlyforonewhovaluesnoveltyassuch.Butsucharelativizednecessityismuchweaker thanthepositionWilliamsoriginallydefended. IconcludefromthisdiscussionthatNagelhasnotshownthatthewaysinwhichweconceiveofourlifeandactivitiesarenecessarilysuchthat,ifourlifeisnot intolerable,deathwillappearasadeprivationofthegreatestgoodthenavailabletousandthatWilliamshasnotshownthatthereisnoreflectiveattitudewithinwhich everlastinglifecouldbedesiredbyitshumansubject. 2 Inourculturemuchattentionispaidtothewayapersondiesnottothesortsoffactsthatarerecordedonadeathcertificate,buttothemoralcharacterofthedeath. Weoftenaskwhether

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somebodydiedhonourablyorshamefully,defiantlyorsubmissively,inagonyofmindorpeacefully,andsoon.Wethinkthattheanswerstothesequestionsare important,anditisnaturaltosupposethatthereasonforthisisthecontributiontheymaketoourviewofthelifeandcharacterofthepersoninquestion.Untilweget answerswefeelincapableofsayingwhatkindoflifethatpersonhadled,orwhatkindofpersonheorshewas.Butthequestionthatnowarisesishowthoseterminal eventscontributetoourunderstandingoftheentirelifeandcharacter. LetusnotefirstapossibilityillustratedbyTolstoy'swellknownstory'ThedeathofIvanIllich'.ThestoryshowshowIvanIllichcomestotermswiththefactthathe willveryshortlydie.TolstoydescribestheturningpointinIvanIllich'sattitudetohisdeathasfollows:'...Itwasrevealedtohimthateventhoughhislifehadnotbeen whatitshouldhavebeenitwasstillpossibletorectifyit.'IbeginwiththeassumptionthatthepossibilityrevealedtoIvanIllichwasthepossibilityofrectifyinghisentire life,includinghispast.Takingtheassumptiontobetrue,theproblemwouldbetounderstandthesenseof'rectify'inthiscontext.WasTolstoysuggestingthatifIvan Illichhadnotexperiencedhisconversion,hislifeuptothetimeatwhich,asithappened,hisconversionoccurredwouldhavebeenmorallydefective,butthatsincehe actuallydidexperienceaconversionhispreviouslifewasnotdefectiveinthatway?Itisimportanttoavoidtwomisunderstandingshere.Itisnotbeingsuggestedthat IvanIllich'sconversionretrospectivelycausedarealchangeinhisearlierlife.Ontheotherhand,itisnotenoughtosaythatitisourjudgementontheearlierlifethatis rectified,byvirtueofthefactthattheconversiondrawsourattentiontosomethingthatwastherealreadybutunnoticedbyus.Theexpression'rectifyinghislife' suggeststhataftertheconversionsomethingwastrueoftheearlierlifethatwouldnototherwisehavebeenso.Butwhateverthisnewtruthmaybe,ifitdoesnotimply thattheearlierlifewasmorallydefective,thentheconversioncannotbedescribedintermsofrectifyingalifethathadnotbeenwhatitshouldhavebeen. Coulditbesaidthattherectificationinquestionisamatterofcompensatingfortheselfishnessoftheearlierlife?ThesuggestionwouldbethatIvanIllich's acceptanceofhisdeathoutweighsallhispreviousfaults,sothattheoverallvalueofhislifeispositive.

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Wewouldhavetotakeintoaccountsomeincommensurableitemsintryingtostrikethisbalance.Butevenifthatwerepossibleinthiscaseatleast,totalkof compensationwouldbeunconvincing.Wewouldbetalkingofbalancingalifetimeofselfishnessagainstafewminutesofacceptance,anacceptancethatnooneelse knowsaboutandwhichcannotleadtoanyexternalmanifestation.Howwouldthatacceptancebeenoughtorectifytheearlierlifeinthesensenowinquestion? Theimportanceofthewayinwhichdeathisfacedmightbeapproachedintermsofaspecificideal.Forexample,theIliadandtheearlyWelshGododdindescribe societiesthatsetaveryhighvalueoncourage.Courageisthevirtuedisplayedinfacingdanger,anditfollowsthatthewayinwhichdeathisfacedinbattlewillbe amongthemostimportantcriteriaofaman'scourageandworth.ItisentirelyunderstandablewhyHomer,andtoalesserextentthepoetoftheGododdin,bothgive detailedaccountsofthewaysinwhichmenfight,killandarekilled.Theseactionsaretheseveresttestsoftheirvalue. CouldasimilarapproachbetakeninthecaseofIvanIllich?Couldwesaythatthewayinwhichhediedwasatestofhischaracter,inthesamewayasasoldier's deathinbattle?ThedifficultyhereisthatthereisnovirtueorsocialroletolinkIvanIllich'sdeathintheappropriatewaywithhisearlierlife.Hewasacivilservant.It maybethatacivilservant'sdutieswouldobligehimorher,inextremecircumstances,tosufferdeath.Butbeingreadytofacedeathisnotacentralfeatureofbeinga goodcivilservantasitisofbeingagoodsoldier.AndintheparticularcaseofIvanIllich,noonecouldthinkthat,bydyingashedid,hewasperformingtotheendhis dutyasacivilservant. Butalthoughreadinesstofacedeathisnotatypicalfeatureofeveryvirtue,isitnottruethatdeathistheseveresttestofanyvirtue,andnotmerelyofsoldierlyvirtue? Tolstoy'sstorysuggeststhattheapproachofdeathmakeseverybodyintrovertedandselfcentred.Consequently,tobeabletogivepriority,asdeathapproaches,to theneedsandrightsofothers,asIvanIllichdid,ishighlyvirtuous.Dyingwellinthissenseisamoraltriumph,anddyingbadlyamoralfailure.Suchideascreatethe possibilityofgivinganewsensetotalkofrectifyingalife.IfIvanIllich'searlierlifehasledtohisconversionandunselfishdeath,mayitnotbesaidthathislifeis therebychanged?Withouttheconver

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sion,hisearlierlifewouldhavebeenanuninspiringseriesofselfishactsbutgiventheconversionwemightdescribeitasperhapsanapprenticeship.Similarly,onthe basisoflaterdevelopments,GiottoiscalledtheprecursorofthehumanistartoftheRenaissance.Withoutthosedevelopmentsthedescriptionwouldbefalse. Evenifallthisisadmitted,itstilldoesnotgenerateanappropriatesenseof'rectify'.IfGiottowasaprecursor,itispartlybyvirtueofanappropriaterelationbetween himandlaterartists.ButthereisnothingtolinkIvanIllich'sconversionwithhisearlierlife,excepthisbarehumanidentity.Hehadnotstriventoliveinaccordancewith virtuesthatarespeciallylinkedwithfacingdeath.Indeed,strictlyspeaking,hehadnovirtuesatall.Hewasaselfishmanwhowaslessrepellentthanmanyofhiskind becauseofhisreluctancetoquarrel.Eventhoughacceptinghisdeathwasthebestthinghehadeverdone,doingsowasnottheclimaxofhisearlierlife,sothathedid nottherebyrectifyhislifeintherelevantsense.Thereisnosuitablerelationbetweenhisconversionandthemoralhistorythatprecededit. Inthelightofallthis,itcannotbesaidthattherectificationmentionedbyTolstoyreferstoIvanIllich'sentirelife.WeoughtrathertosaythatIvanIllichintendsto rectifywhatremainsofhislife.Heremainsapersonwholivedthegreaterpartbyfarofhislifeinselfishnessandwhoexperiencedadeathbedconversion.Idonot wanttosuggestthattheeventwasunimportant.Itisratherthatitsimportanceisneitherretrospectivenorprospectivebutliesratherintheinherentvalueofanunselfish viewandinthespecialobstaclesthattheconsciousnessofimminentdeathcreatesfortheachievementofsuchaview. Notes Anearlierversionofthispaperwaspublished(inWelsh)inEfrydiauAthronyddol,LIII(1990).
1 2

Inhisessay'Thoughtsforthetimesonwaranddeath'(1915),inhisCollectedPapers(London,HogarthPress,1950),IV,287317. Inhisarticle'Ondeathasalimit',inJ.Donnelly(ed.),Language,MetaphysicsandDeath(NewYork,FordhamUniversityPress,1978),2531.

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3 4 5 6

Wittgenstein,TractatusLogicoPhilosophicus,tr.D.F.PearsandB.F.McGuiness(London,RoutledgeandKeganPaul,1963),6.4311. Forthesourceofthisthought,seen.5below. Inhisarticle'Death',inhisMortalQuestions(Cambridge,CUP,1979),3n.

Fromhis'LettertoMenoeceus':DiogenesLaertius,LivesoftheEminentPhilosophers,X.125transl.A.A.LongandD.Sedley,TheHellenisticPhilosophers (Cambridge,CUP,1987),1,150.
7 8 9

Nagel,'Death',78forLucretius'point,seehisNatureoftheUniverse(Harmondsworth,Penguin,1951),125. Nagel,op.cit.,9. Nagel,op.cit.,910. Luke,2:2932. Nagel,op.cit.,10. 'TheMakropulosCase',inB.Williams,ProblemsoftheSelf(Cambridge,CUP,1973),82100.

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INDEX
A abortion,68 Aiken,William,3740 Aquinas,Thomas,104 AntiochusEpiphanes,175 Arthur,DrLeonard,523 Athanasius,St,107 Avaran,Eleazur,106 B Bauman,Zygmunt,1623,165 Biezanek,Dr,48 Blackstone,W.,112 Bland,Anthony,44,51,54,567 BolamRule,51 Bonhoeffer,Dietrich,125 Bowlby,J.,87 Brock,Dan,3941 Buddha,177 C Capek,Karel,190 capitalpunishment,163 ChristianScience,171 CohnSherbok,Dan,Rabbi,175 Cox,Dr,47,49 D demographicchanges,810,12,17 E Ecclesiastes,168 Elias,Norbert,161,1635 Engelhardt,Tristram,11920 Epicurus,1878 ethics64ff.,117ff.,1201 euthanasia,3,37,45f.,77f.,101ff.,117ff. evil,21,1712,175 existentialism,3,154ff. F Francis,St,ofAssisi,108 Freud,Sigmund,184 G Giddens,Anthony,161,1645 Gilkey,Langdon,10 Gillick,Victoria,48 Giotto,195 Guardian,24 H Hare,R.M.,11819 Harris,John,35,401 Heidegger,Martin,3,154ff. Hick,John,1723,178 Homer,194 hope,234,111,170 Hume,Basil,Archbishop,97 Hume,David,112 I immortalityofthesoul,17,134,173f. J JesusChrist,106,109,111,135,159,171 Job,112,1267,174 Jochemsen,DrHenk,118 John,Bob,137 JohnPaul,II,Pope,101 JudasIscariot,106 K KagawaSinger,Marjorie,40 Kant,Immanuel,124 Keats,John,1723,188 Kind,Paul,313,36 KublerRoss,Elisabeth,1923 L law,9,44ff. AbortionAct1968,68 HouseofLords,50,58,84ff.,101,102 SuicideAct1961,45 LeoXII,Pope,103 lifeafterdeath,23,111,114,133ff.,162,170,172ff. neardeathexperiences,133ff. longevity,2,8,9,13,33 Lorimer,David,137 Lucretius,188 Luke,St,126 M Macquarrie,John,159,160,164 medicalprofessions,10f.,21,23,29,44,46f.,54,57,60,65f.,72,74f.,95,104,109,157 BritishMedicalAssociation,59

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GeneralMedicalCouncil'sEducationCommittee,656 medicine,10,19,20,103,113,118,157 economicallocation/resources,30,34,37,38,39,57,734 technologicalnatureof,1011,29,59,114 Mellor,Philip,1626 Menzel,PaulT.,346,42 Morse,M.,147 mortalityrates,8 N Nagel,Thomas,1879,192 Nietzche,Friedrich,124 Nyang,Sulayman,176 P palliativecare,64ff. medicine,10,112 Parfit,Derek,178 pastoralcare,8,10,11,12,26,87ff.,152 Paul,St,107,11011,127,172 persistentvegetativestate,445 Plato,133 pluralism,25,40 processtheology,171 prolongationoflife,2,16,29,57 psychologicalfactors,8,20,113,136,146,148 Q qualityoflife,29f.,83 QualityAdjustedLifeYear,309,412 R Razis,106 reincarnation,134 religiousbeliefs234,44,96f.,101ff.,117ff.,125,133,138,149,163,168ff. resurrection,17 Ring,K.,139 ritualsregardingthedead,14f. Rosing,C.K.J.,139 Rosser,Rachel,313,36 S Sabom,M.B.,140 Samson,106 sanctityoflife,46,74f.,1223,125 Saul,King,106 Scarman,Lord,48 Schopenhauer,A.,124 scientificconsiderations,133,136,137,152,1567,162,166 secularconsiderations,21,24,74,102,109,117,127,162,163,168,170,180 BritishHumanistAssociation,1023 Shakespeare,William,3,104,188 sociologicalconsiderations,154f.,161ff. soulmakingtheodicy,171f. Staudacher,C.,91 suicide,45,556,105f.,109,1223,160 T TerrenceHigginsTrust,58 Thomas,Dylan,22 Tolstoy,L.N.,188,193f. Tug,Salih,176 V VanEvra,James,1846 Victoria,Queen,103 W Walton,Lord,ofDetchant,84 war,1718 Ward,Keith,174 Williams,Bernard,1902 Wittgenstein,Ludwig,185 Worden,J.W.,91 WorldHealthOrganization,64