Implementation and implications of Physician-Assisted ...

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.

4

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.’’

7

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).

11

Failureof“Safeguards”:Elder&DisabilityAbuse

• Onein10eldersareabusedintheU.S.• UndertheOregon&Washingtonlaws,afriendorrelative–evenanheir–can“encourage”aneldertomaketherequest,signtheformsasawitness,pickuptheprescription,andevenadministerthedrug(withorwithoutconsent)becausenoobjectivewitnessisrequiredatdeath,sowhowouldknow?

12

UNPROTECTEDPATIENTS

• Neitherdoctorsnorwitnessesneedknowthepatientmorethansuperficially.Witnessescansimplychecktheperson’sID.

• Doctorswhodeclinetoprescribeformedicalreasonsarenotinterviewed.

• Peoplecansimplydoctorshopuntiltheyfindaprescriber.

13

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

15

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.

19

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/

22

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

Implementation and implications of Physician-Assisted ...

Documents

Transcript of Implementation and implications of Physician-Assisted ...