euthanasia embedded in palliave...
TRANSCRIPT
JanLBernheimMDPhD
End-ofLifeCareResearchGroupVrijeUniversiteitBrussel,Belgium
’ EuthanasiaembeddedinpalliaFvecare.
Responsestoessen)alis)ccri)cismsoftheBelgianmodelofIntegralEnd-of-LifeCare
End-ofLifeCareResearchGroup,VrijeUniversiteitBrussel&UGent
2017
2008ControversialArFcleBriFshMedicalJournal
2014JournalofBioethicalInquiry
QuesFonsandAnswersontheBelgianModelofIntegralEnd-of-LifeCare:Experiment?Prototype?“Eu-Euthanasia”:TheCloseHistorical,andEvidentlySynergis)c,Rela)onshipBetweenPallia)veCareandEuthanasiainBelgium:AnInterviewWithaDoctorInvolvedintheEarlyDevelopmentofBothandTwoofHisSuccessors• JanL.Bernheim,WimDistelmans,ArsèneMullie,MichaelA.Ashby
THISPRESENTATION
• BACKGROUND:humanprogressincontroloverlife
• WHATISTHE‘BELGIAN’MODELOFINTEGRALEND-OF-LIFECAREWITHEUTHANASIAEMBEDDEDINPALLIATIVECARE(PC)
• EPIDEMIOLOGICALFACTSONTHE‘BELGIAN’MODEL
• RESPONSESTOTHEDOCTRINALARGUMENTSAGAINSTINTEGRALEND-OF-LIFECARE
• AGLIMPSEINTOTHEFUTURE
THELARGERPICTURE:HUMANPROGRESSINCONTROLOVERLIFE
• BEGINNINGOFLIFE:-contracep)on-abor)on-assistedprocrea)on
• ENDOFLIFE
-pallia)vecare-assisteddying
End-of-LifeCareResearchGroup
TheNetherlands:1990-2002:regulatedtolerance
Law:April2002
Belgium:May2002
Luxembourg:March2009
Benelux=prototypelaboratoryofaworldwideevoluFon?
CQ
2014Québec,Canada,JuneLawonend-of-lifecare:Rightto- PalliaFveCare- MedicalAidinDying2016Canada:MedAininDying
=Inten%onallytermina%ngthelifeofanotherperson,atthisperson’srequest.
Euthanasialegalunder2002BelgianLawif:SUBSTANTIVE• Repeatedconsistentrequest,undernoexternalpressure,inwri)ng(+
witnessedwri]enadvancedirec)vesforthecaseofirreversibleincompetence).
• ‘’Intolerable”andirreversiblesuffering,physicaland/ormental• Causedbyanirreversiblemedicalcondi)on• Competentadultpa)entPROCEDURAL• Dulyinformedofalterna)ves,includingPC• CarriedoutbyMD,acerconsulta)onofnursingteamandacompetent
colleague’;MDpresent)lldeath• Ifpa)entnotexpectedtodiewithinforeseeablefuture,2colleagues
mustbeconsultedandamoratoriumof1monthrespected• ReportedtoFederalControl&Evalua)onCommissionforaccountability
the underlying ethics of the Law are PROCEDURAL
ratherthanPRESCRIPTIVEorNORMATIVE:
EU-EUTHANASIA
PALLIATIVECAREASAGATEKEEPERFOREAS?
• Obligatoryconsulta)onofPCbeforeEASwasproposedintherun-uptothe2002lawinBelgium
• Thisamendmentwasnotenactedbecausetooburdensomeforthepa)ent
• Anyway:professionalPCinvolvedin70%ofeuthanasiacases
Mul)disciplinarypreamblestoeuthanasia
Euthanasiapart&parcelofPalliaFveCareinBelgium
• 2003:FlemishFedera)onforPCposi)onpaper:
“…Pallia%vecareandeuthanasiaareneitheralterna%vesnorantagonis%c.(…)Euthanasiamay(…)bepartofpallia%vecare(…).Caregiversarefullyen%tledtoethicallimita%ons,buttheymustbeexpectedtostatetheselimita%onscandidly,clearly,andaboveallindue%me.”
= so far unique in the world
Paradoxical ? An oddity of
Belgium ?
IntegralEnd-of-LifeCare
IntegralPalliaFveCare
Euthanasia
TheBelgianModelofEnd-of-LifeCare
ConvenFonalPalliaFveCare
Alldeaths
>50%
~1,2%~3,4%
EPIDEMIOLOGICALFACTSABOUT
EUTHANASIAANDDEVELOPMENTOFPALLIATIVECAREINFLANDERS
Euthanasia related PC related Federal public funding of PC
1980 2000199519901985
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ic F
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illio
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ht-to
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ietie
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-eth
Parli
am. h
earin
gs
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ptio
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than
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udy
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ernm
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eg
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ks
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eder
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ay-c
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. PC
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n
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ay-c
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PCbill
EuthanBill
Pa)entRightsBill
InflaFon-adjustedyearlyfederalexpenditureforpalliaFvecareservicesinBelgium~10%/yr.(Normforhealthcare=2%)
0
20
40
60
80
100
120
140
160
180
200
2002 2003 2004 2005 2006 2007 2011
InflaFon-adjustedyearlyfederalexpenditureforpalliaFvecareservicesinBelgium:
breakdownbyplaceofcare
PCathome
PCinhospital
PCinHRS
0
20
40
60
80
100
120
2002 2003 2004 2005 2006 2007 2008 2009 2010 2011
Demand-driven!
PercapitaparFcipantsinEuropeanAssociaFonfor
PalliaFveCareconferences2002–2005
Spiritual/existenFal(SPEX)careineuthanasiacases
0.2
1.9
3.8
0123456789
10
to a (very)small extent
averaged to a (very)large extent
spiritual or existential care
% pa
tient
s whe
re d
ecisi
on
euthanasia / PAS
VUBBrusselsEnd-of-lifeCareResearchGroup
VandenBlockL,etal.Howareeuthanasiaadothermedicalend-of-lifedecisionsrelatedtothecareprovidedinthefinalthreemonthsoflife?BrMedJ2009Jul;339:b2772
incasesofeuthanasia2xmoreintensivethanaverage-intensitySPEX
Recap&Conclusion
• Euthanasiapart&parcelofpallia)vecare• NotonlyinBelgium:
-inOregonandWashington,over70%ofcasesofassistedsuicideoccuraceraPCtrajectory-QuébeclegislaturehasenactedcomprehensiveMedicalAidinDyinglaw,includingPCandeuthanasia
PC-DOCTRINALARGUMENTSAGAINST
INTEGRALPALLIATIVECARE
1. Epistemological:«epidemiologicalevidenceirrelevantinnorma)vedebate»
2. Historical:«PCfoundedtopreventeuthanasia»3. Doctrinal:theWHOdefini)onis:«PCintends
neithertoprolongnortoshortenlife»4. Ethical:«doctorsdon’tkill»5. Pragma%c:-«PCisbydefini)onmeaningful,
neverfu)le»
1.EPISTEMOLOGICAL:«epidemiologicalevidenceirrelevantinnorma)vedebate»
«Noamountofempiricaldatacanleadtothenorma%veconclusionthatintegralend-of-lifecareisacceptable»à Thisdisqualifiesevidenceandpositsthatdoctrinetrumpsfact
2.HISTORICAL:«PCfoundedtopreventeuthanasia»
• Sowhat?Historyevolves• Inthosedays,euthanasiawaslargelyunvoluntary
• Surgery,womenandindeedpallia)vecarewereexcludedfrommedicinebytheHippocra)cOath
HIPPOCRATICOATH
• “NeitherwillIadministerapoisontoanybodywhenaskedtodoso,norwillIsuggestsuchacourse”=outofconcernthatphysicianscouldbeemployedaspoli%calassassins
• “Iwillnotusetheknife,noteven,verily,onsufferersfromstone”excludessurgery
• “….instruc)ontomyownsons,thesonsofmyteacher….”noplaceforwomen
3.DOCTRINAL:WHOdefini)onofpallia)vecare:«itINTENDSneithertoprolongnortoshortenlife»
• WHOisonlyoneofthemanydefini)onsofPC
• Inten%onisapoorethicalyards)ck:
-inten)oniscomplex,mul)pleand elusive-itencouragesabuseofthe‘double- effectprinciple’
4.ETHICAL:FoundaFonsofPCandLegalisedEuthanasia
Palliative Care Legalisation of Euthanasia
Clinical Relief of suffering Prevention of medical
futility
Relief of suffering
Prevention of palliative futility
Ethical 1. Beneficence
2. Patient autonomy 1. Patient autonomy
2. Beneficence
Life stance of advocates
Often religious Often agnostic/atheistic
Potential for abuse Palliative futility Slippery slope
Public support Universal
Massive in ‘advanced’ countries
5.PRAGMATIC:a)«PCisneverfu)le»
Whoistheonetodecidethis?Ifphysician,contrarytoPCtenetofpa)entcentralposi)on
5.PRAGMATIC:b)WhatIfEASisexcludedfromPCin
EASpermissivejurisdic)ons?
• IfEASiscarriedoutonlybycaregiverslesscompetentforEOLcare:
1) pa)entswhowantthepossibilityofEASwilltendtoshunprofessionalPCandthusnotreceiveop)malEOLcare.
2) EASwilllikelybelessprac)cedinaspiritof‘totalcare’.
è Thus,theoverallqualityofallEOLcarestandstodecline
THEDIREPREDICTIONSTHATDIDNOTMATERIALISE
AGLIMPSEINTOTHEFUTUREHistoriccomparisonofAbor)onandEuthanasia
AborFon Euthanasia
ProfessionalBody Interna)onalFedera)onofObstetricsandGynaecology(FIGO)
EuropeanAssocia)onofPallia)veCare(EAPC)
HistoryofRejec)on <1998:Rejec)on 1995:Rejec)on2003,2015:“EuthanasiashouldnotbepartofPC”
ChangeofStance “…awoman’srighttoautonomyjus)fiestheprovisionofsafeabor)on…acerappropriatecounselling,awoman[has]therightto…abor)on…thehealthcareservice[has]anobliga)ontoprovidesuchservicesassafelyaspossible.”
Likelyfuture:integralend-of-lifecare
