euthanasia embedded in palliave...
TRANSCRIPT
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JanLBernheimMDPhD
End-ofLifeCareResearchGroupVrijeUniversiteitBrussel,Belgium
’ EuthanasiaembeddedinpalliaFvecare.
Responsestoessen)alis)ccri)cismsoftheBelgianmodelofIntegralEnd-of-LifeCare
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End-ofLifeCareResearchGroup,VrijeUniversiteitBrussel&UGent
2017
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2008ControversialArFcleBriFshMedicalJournal
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2014JournalofBioethicalInquiry
QuesFonsandAnswersontheBelgianModelofIntegralEnd-of-LifeCare:Experiment?Prototype?“Eu-Euthanasia”:TheCloseHistorical,andEvidentlySynergis)c,Rela)onshipBetweenPallia)veCareandEuthanasiainBelgium:AnInterviewWithaDoctorInvolvedintheEarlyDevelopmentofBothandTwoofHisSuccessors• JanL.Bernheim,WimDistelmans,ArsèneMullie,MichaelA.Ashby
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THISPRESENTATION
• BACKGROUND:humanprogressincontroloverlife
• WHATISTHE‘BELGIAN’MODELOFINTEGRALEND-OF-LIFECAREWITHEUTHANASIAEMBEDDEDINPALLIATIVECARE(PC)
• EPIDEMIOLOGICALFACTSONTHE‘BELGIAN’MODEL
• RESPONSESTOTHEDOCTRINALARGUMENTSAGAINSTINTEGRALEND-OF-LIFECARE
• AGLIMPSEINTOTHEFUTURE
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THELARGERPICTURE:HUMANPROGRESSINCONTROLOVERLIFE
• BEGINNINGOFLIFE:-contracep)on-abor)on-assistedprocrea)on
• ENDOFLIFE
-pallia)vecare-assisteddying
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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
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=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
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PALLIATIVECAREASAGATEKEEPERFOREAS?
• Obligatoryconsulta)onofPCbeforeEASwasproposedintherun-uptothe2002lawinBelgium
• Thisamendmentwasnotenactedbecausetooburdensomeforthepa)ent
• Anyway:professionalPCinvolvedin70%ofeuthanasiacases
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Mul)disciplinarypreamblestoeuthanasia
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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 ?
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IntegralEnd-of-LifeCare
IntegralPalliaFveCare
Euthanasia
TheBelgianModelofEnd-of-LifeCare
ConvenFonalPalliaFveCare
Alldeaths
>50%
~1,2%~3,4%
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EPIDEMIOLOGICALFACTSABOUT
EUTHANASIAANDDEVELOPMENTOFPALLIATIVECAREINFLANDERS
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Euthanasia related PC related Federal public funding of PC
1980 2000199519901985
4
2 6
5
4
31 8 10
7
12
13
11
9
14 1615
1 2
10
4 53
9
7 8 11 1312 1614 156
Publ
ic F
u n
d i
n g
(i
n 10
€) m
illio
n
Rig
ht-to
-die
Soc
ietie
s
Legislative initiatives
Fed
advi
s. co
mm
. Bio
-eth
Parli
am. h
earin
gs
Ado
ptio
n eu
than
. law
Epid
emio
l. st
udy
ELD
Gov
ernm
enta
l law
pro
posa
l
1 st P
all.
Hom
e C
are,
CC
C
Hom
e ca
re te
ams
Om
ega
1st Hospice
1 st
pal
liat.
Hos
pit.
team
s
15 R
eg
ion.
PC
net
wor
ks
360
Hos
pice
bed
s
26 F
eder
al a
ssoc
iatio
ns
1 st P
C d
ay-c
are
cent
re
PC h
ospi
t. su
pp. t
eam
s
Com
preh
ens.
Fed
. PC
pla
n
11 d
ay-c
are
cent
res
2
3
5
1
6
PCbill
EuthanBill
Pa)entRightsBill
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InflaFon-adjustedyearlyfederalexpenditureforpalliaFvecareservicesinBelgium~10%/yr.(Normforhealthcare=2%)
0
20
40
60
80
100
120
140
160
180
200
2002 2003 2004 2005 2006 2007 2011
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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!
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PercapitaparFcipantsinEuropeanAssociaFonfor
PalliaFveCareconferences2002–2005
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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
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Recap&Conclusion
• Euthanasiapart&parcelofpallia)vecare• NotonlyinBelgium:
-inOregonandWashington,over70%ofcasesofassistedsuicideoccuraceraPCtrajectory-QuébeclegislaturehasenactedcomprehensiveMedicalAidinDyinglaw,includingPCandeuthanasia
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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»
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1.EPISTEMOLOGICAL:«epidemiologicalevidenceirrelevantinnorma)vedebate»
«Noamountofempiricaldatacanleadtothenorma%veconclusionthatintegralend-of-lifecareisacceptable»à Thisdisqualifiesevidenceandpositsthatdoctrinetrumpsfact
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2.HISTORICAL:«PCfoundedtopreventeuthanasia»
• Sowhat?Historyevolves• Inthosedays,euthanasiawaslargelyunvoluntary
• Surgery,womenandindeedpallia)vecarewereexcludedfrommedicinebytheHippocra)cOath
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HIPPOCRATICOATH
• “NeitherwillIadministerapoisontoanybodywhenaskedtodoso,norwillIsuggestsuchacourse”=outofconcernthatphysicianscouldbeemployedaspoli%calassassins
• “Iwillnotusetheknife,noteven,verily,onsufferersfromstone”excludessurgery
• “….instruc)ontomyownsons,thesonsofmyteacher….”noplaceforwomen
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3.DOCTRINAL:WHOdefini)onofpallia)vecare:«itINTENDSneithertoprolongnortoshortenlife»
• WHOisonlyoneofthemanydefini)onsofPC
• Inten%onisapoorethicalyards)ck:
-inten)oniscomplex,mul)pleand elusive-itencouragesabuseofthe‘double- effectprinciple’
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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
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5.PRAGMATIC:a)«PCisneverfu)le»
Whoistheonetodecidethis?Ifphysician,contrarytoPCtenetofpa)entcentralposi)on
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5.PRAGMATIC:b)WhatIfEASisexcludedfromPCin
EASpermissivejurisdic)ons?
• IfEASiscarriedoutonlybycaregiverslesscompetentforEOLcare:
1) pa)entswhowantthepossibilityofEASwilltendtoshunprofessionalPCandthusnotreceiveop)malEOLcare.
2) EASwilllikelybelessprac)cedinaspiritof‘totalcare’.
è Thus,theoverallqualityofallEOLcarestandstodecline
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THEDIREPREDICTIONSTHATDIDNOTMATERIALISE
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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
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