Implementationandimplicationsof
Physician-AssistedDeath:It’sAllaboutDisability
JohnB.KellyNOTDEADYET
NewEnglandRegionalDirector497StateStreet
Rochester,NewYork14608www.notdeadyet.org
CONTEXT:Peoplewithseriousillnessesandterminalconditionsaredisabled
PEOPLEWITHTERMINALCONDITIONS
PEOPLE WITH DISABILITIES
Disability=Terminal:JackKevorkian
• Two-thirdsofJackKevorkian’sbodycountwerepeoplewithnon-terminaldisabilities.
• When34-year-oldAnnetteBlackmandiedatthehandsofJackKevorkian,"Kevorkian'slawyerGeoffreyFiegeridentifiedBlackmanforpoliceandsaidshesufferedfrommultiplesclerosiscausing'totalincontinence.‘” 3
Disability=Death:“BetterDeadthanDisabled”
• Popularcultureromanticizesthedeathofpeoplelikeme.Fromfilmslike“WhoseLifeIsItAnyway?,”“Million-DollarBaby,”“TheSeaInside,”andlastyear’shit“MeBeforeYou,”peoplearetaughtthatliveslikemineareahumiliatingburdencallingoutfordeath.
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ELIGIBILITYTerminalIllnessPrognosis
• Oregonmodelbillsdefine“terminal”as“incurable”and“irreversible”evenifthatisbasedonnon-treatmentordenialoftreatmentbyinsurers
• Thousandsofpeoplearemisdiagnosedasterminaleveryyear.
• MisdiagnosisthreatensEVERYONE. 5
OregonDataShowNon-TerminalPeopleGetLethalPrescriptions
In2017,atleastonepersonlived603days;acrossallyears,thelongestwas1009days.IneveryyearexceptthefirstyearinOregon,peopleoutlivedtheterminalprognosistheyweregiven. 6
MISTAKENPROGNOSIS:JeanetteHall
• Fromherlettertotheeditor,BostonGlobe,October4,2011• Ididn’twanttosuffer.Iwantedtodowhatourlawallowed,andIwantedmydoctortohelpme.Instead,heencouragedmenottogiveup,andultimatelyIdecidedtofightthedisease.Ihadbothchemotherapyandradiation.
• Iamsohappytobealive!Itisnow11yearslater.• Ifmydoctorhadbelievedinassistedsuicide,Iwouldbedead.Ithankhimandallmydoctorsforhelpingmetochoose“lifewithdignity.’’
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NEJM:“EXISTENTIALDISTRESS”
• Reviewofhospital-basedprograminCanada• “ThosewhoreceivedMAiDtendedtobewhiteandrelativelyaffluentandindicatedthatlossofautonomywastheprimaryreasonfortheirrequest.
• “Othercommonreasonsincludedthewishtoavoidburdeningothersorlosingdignityandtheintolerabilityofnotbeingabletoenjoyone’slife.
• “Fewpatientscitedinadequatecontrolofpainorothersymptoms.”
Li,Madeleine,etal,MedicalAssistanceinDying—ImplementingaHospital-BasedPrograminCanada,NEJM 8
Reportedreasonsforassistedsuicide:Oregon1998-2017
End of life concerns 1998-2017 HIS OR HER TERMINAL CONDITION REPRESENTING A STEADY LOSS OF AUTONOMY.
91 % THE DECREASING ABILITY TO PARTICIPATE IN ACTIVITIES THAT MADE LIFE ENJOYABLE.
90 % A LOSS OF DIGNITY. 76% THE LOSS OF CONTROL OF BODILY FUNCTIONS, SUCH AS INCONTINENCE AND VOMITING.
46% THE PHYSICAL OR EMOTIONAL BURDEN ON FAMILY, FRIENDS OR CAREGIVERS.
44% INADEQUATE PAIN CONTOL OR CONCERN ABOUT IT. 26 % THE FINANCIAL COST OF TREATING OR PROLONGING HIS OR HER TERMINAL CONDITION.
4%
Oregonreport,Year20(2017):http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf
BAIT&SWITCH• C&CpresidentBarbaraCoombsLeetoldtheWashingtonPostaboutdisabilityscenariossheconsidered“worsethandeath”Leedescribedoneassistedsuicidewhoconsideredheremotionaldistressoverincontinence“morepainfulthananyofthepainfromthecancer.”
• ProponentDanDiazsaidinthesamearticlethatifhefoundhimselfdependentonothersfortoiletingandpositioning,“Iwouldthensubmit,‘isthatreallyliving?’”AsaCaliforniadoctorsummedup,“It’salmostneveraboutpain.It’saboutdignityandcontrol.”
• Dr.IraByock,aleadingpalliativecareexpert,toldthePost,“it’sabaitandswitch.We’reactuallyhelpingpeoplehastentheirdeathsbecauseofexistentialsuffering.That’schillingtome.”Almostallpainiscontrollable,Byocksaid.
Szabo,Liz,‘Deathwithdignity’lawsandthedesiretocontrolhowone’slifeends,WashingtonPost,October24,2016 10
EconomicsofAssistedSuicideAssistedsuicidemakesforadeadlycombinationWithourbroken,profit-drivenUShealthcaresystem.DerekHumphry,founderoftheHemlocksociety,theprecursortoCompassion&Choices,wrotein2000"...economics,notthequestforbroadenedindividuallibertiesorincreasedautonomy,willdriveassistedsuicidetotheplateauofacceptablepractice."DerekHumphry&MaryClement,“FreedomtoDie:People,PoliticsandtheRighttoDieMovement”(2000).
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Failureof“Safeguards”:Elder&DisabilityAbuse
• Onein10eldersareabusedintheU.S.• UndertheOregon&Washingtonlaws,afriendorrelative–evenanheir–can“encourage”aneldertomaketherequest,signtheformsasawitness,pickuptheprescription,andevenadministerthedrug(withorwithoutconsent)becausenoobjectivewitnessisrequiredatdeath,sowhowouldknow?
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UNPROTECTEDPATIENTS
• Neitherdoctorsnorwitnessesneedknowthepatientmorethansuperficially.Witnessescansimplychecktheperson’sID.
• Doctorswhodeclinetoprescribeformedicalreasonsarenotinterviewed.
• Peoplecansimplydoctorshopuntiltheyfindaprescriber.
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ViolationsoftheLawGoUnpunished
• OregonianWendyMelcher,atrans-woman,wasterminallyillwiththroatcancer,andwasreceivinghospiceservicesbuthadnotenrolledintheassistedsuicideprogram.
• Herhospicenurseandanothernurse–whowasallegedlyhavinganaffairwithWendy’spartner–triedtokillherwithmassivemorphinesuppositories.TheysaidtheywerefollowingWendy’sinstructions,disputedbythefamily.
• Byclaimingtheiractwasassistedsuicide,theywerenotchargedwithacrime,butratherdealtwithinsecretbytheOregonnursingboard.A30daylicensesuspensionforOne,twoyearsprobationfortheother.
• ThePortlandTribunewrote:“Ifnurses—oranyoneelse—arewillingtogooutsidethelaw,thenalltheprotectionsbuiltintotheDeathWithDignityActarefornaught.” 14
Wash.StateElderLawAttorneyMargaretDoresays:
Assistingpersonscanhavetheirownagendas:• anadultchildwantinganinheritance;• afinancialpredatorseekingfinancialgain;
• oradoctorwantingtohidemalpractice.www.choiceillusion.org
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FailureofSafeguards:NoWitnessAttheDeath
Inabouthalfthecases,theOregonHealthDivisionreportsthatnohealthcareproviderwaspresentatthetimeofingestionofthelethaldrugsoratthetimeofdeath.Sothereisnoindependentwitnesstoself-administrationofthelethaldrugsnortoconsentatthattime. 16
SAFEGUARD:CAPABILITY
Oregon’sstatisticsshowthat,in2017,onlyfiveout
of143patientswerereferredforpsychologicalevaluations,3.5%.Overalltheyears,only4.9%have
beenreferred. 17
Thesafeguardsdoworkfordoctorsandothersuicideassisters
• Doctorsarenotheldliableiftheyactin“goodfaith,”animpossiblestandardtodisprove.
• The“goodfaith”standardmakesalltheother“safeguards”unenforceable.
• Forallotherprocedures,doctorsareliableiftheyarenegligent. 18
MAJORDISABILITYRIGHTSGROUPSOPPOSED
Allthemajornationaldisabilityrightsgroupsthathavetakenapositiononassistedsuicideagainstprevailingprogressiveviews.
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MajorU.S.DisabilityGroupsOpposedToAssistedSuicide• ADAPT• AmericanAssn.ofPeoplewithDisabilities• AssociationofProgramsforRuralIndependentLiving• AutisticSelfAdvocacyNetwork• DisabilityRightsEducation&DefenseFund• NationalCouncilonDisability• NationalCouncilonIndependentLiving• TASH• TheArcoftheUnitedStates• UnitedSpinalAssociation 20
SUMMARY“Ifassistedsuicideislegal,somepeople’sliveswillbeendedwithouttheirconsent,throughmistakes,coercionandabuse.Nosafeguardshaveeverbeenenacted,orevenproposed,thatcanpreventthisoutcome,whichcanneverbeundone.”MarilynGolden,DisabilityRightsEducation
&DefenseFund 21
CITATIONSJackKevorkiankillednon-terminaldisabledpeople• Roscoe,LoriA.,atal,“AComparisonofCharacteristicsofKevorkianEuthanasiaCasesandPhysician-AssistedSuicidesin
Oregon,”TheGerontologist,Volume41,Issue4,1August2001,Pages439–446.https://doi.org/10.1093/geront/41.4.439
AnnetteBlackman• Story,Kristin,“ClintonTownshipPoliceProbeAssistedSuicide,”Detroitnews,October14,1997.Linkhasdisappeared.“BetterDeadthanDisabled”• Coleman,Diane,“FaceToFace:Challengingthe‘BetterDeadThanDisabled’Message,”NotDeadYetwebsite,September1,
2016.http://notdeadyet.org/2016/09/face-to-face-challenging-the-better-dead-than-disabled-message.html• CenterforDisabilityRights,“LiveOn.DisabledLivesAreWorthLiving,”VideoPSA,June3,2016.https://www.youtube.com/watch?v=PLPAzs0A5-Q
AssistedSuicideEligibility• Oregonrevisedstatute:
http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Pages/ors.aspx
Non-terminalpeopledispensedlethaldrugs• OregonHealthAuthority(OHA),PublicHealthDivision,CenterforHealthStatistics,“Year20:,OregonDWDAannual
statisticalreport2017,”February8,2018:http://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year20.pdf
• JeanetteHall,“Shepushedforlegalrighttodie,and-thankfully-wasrebuffed,”lettertotheeditor,BostonGlobe,October4,2011:http://archive.boston.com/bostonglobe/editorial_opinion/letters/articles/2011/10/04/she_pushed_for_legal_right_to_die_and___thankfully___was_rebuffed/
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CITATIONS,p.2NEJM:“ExistentialDistress.”• Li,Madeleine,etal,“MedicalAssistanceinDying—ImplementingaHospital-BasedPrograminCanada,”NEnglJMed2017;
376:2082-2088DOI:10.1056/NEJMms1700606
BaitandSwitch• Szablo,Liz,"‘Deathwithdignity’lawsandthedesiretocontrolhowone’slifeends,"WashingtonPost,October24,2016:
https://www.washingtonpost.com/national/health-science/death-with-dignity-laws-and-the-desire-to-control-how-ones-life-ends/2016/10/24/6882d1e6-9629-11e6-bc79-af1cd3d2984b_story.html?utm_term=.bf090dd68cae
EconomicsofAssistedSuicide• DerekHumphry&MaryClement,“FreedomtoDie:People,PoliticsandtheRighttoDieMovement”(2000).FailureinSafeguards:ElderlyandDisabledAbuse• Lachs,MarkS.,M.D.,andKarlA.Pillemer,Ph.D.,“ElderAbuse,”November12,2015NEnglJMed2015;373:1947-1956,DOI:10.1056/NEJMra1404688ViolationsgoUnpunished• Korn,Peter,"Assistedsuicide'sontrialagain,”PortlandTribune,July5,2007:portlandtribune.com/component/content/article?id=89065• PortlandTribuneEditorial,“Anothercasefornursingreform,”July9,2007:portlandtribune.com/component/content/article?id=89126• Dore,Margaret,ChoiceIsanIllusion,website:http://www.choiceillusion.org/• Golden,Marilyn,“Assistedsuicideisbadmedicine,”SacramentoBee,November1,2014http://www.sacbee.com/opinion/california-forum/article3480794.html 23