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5/23/16 1 Physician Assisted Dying in California Elizabeth Dzeng, MD, PhD, MPH Division of Hospital Medicine, UCSF Advances in Internal Medicine May 23, 2016 Outline of Talk Defining terms associated with Physician Aid in Dying (PAD) Ethics and debates surrounding PAD Overview of the End of Life Options Act How to respond to PAD requests How PAD is administered Questions to consider when responding to the law What is physician aid-in-dying? physician provides a competent, terminally ill patient with a prescription for a lethal dose of medication, upon the patient's request, which the patient intends to use to end his or her own life. Physician Aid in Dying (PAD) versus Physician Assisted Suicide (PAS) PAD vs Euthanasia Physician Aid in Dying (PAD) Patient must self-administer drug Physician provides the medications, but the patient decides whether and when to ingest legal in Oregon, Washington, Vermont, Montana, and soon California Euthanasia Physician administers the medication or acts directly to end the patient’s life Illegal in every state in the US

Outline of Talk Physician Assisted Dying in California

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5/23/16

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Physician Assisted DyinginCalifornia

Elizabeth Dzeng, MD,PhD, MPHDivision ofHospital Medicine, UCSF

Advances in Internal Medicine

May23,2016

OutlineofTalk

• Defining terms associatedwith Physician AidinDying(PAD)

• Ethics anddebatessurrounding PAD• OverviewoftheEndofLifeOptions Act• Howtorespond toPADrequests• HowPADisadministered• Questions toconsider whenresponding tothelaw

Whatisphysicianaid-in-dying?

• physician provides acompetent, terminally illpatient with aprescription for alethal doseofmedication, uponthe patient's request, whichthepatient intends to usetoend hisorherownlife.

• Physician AidinDying(PAD) versusPhysicianAssistedSuicide (PAS)

PADvs EuthanasiaPhysician Aid inDying (PAD)• Patient mustself-administer drug• Physicianprovides themedications, butthepatient decides whether andwhen to ingest

• legal inOregon, Washington, Vermont, Montana,andsoonCalifornia

Euthanasia• Physicianadministers themedication oractsdirectly toend the patient’s life

• Illegal inevery state inthe US

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OtherpracticesdistinctfromPADWithholding/withdrawinglife-sustainingtreatments:• A competentadultpatientortheirsurrogatemakesaninformed

decisiontorefuselife-sustainingtreatmentPainmedicationthatmayhastendeath:• Aterminallyill,sufferingpatientmayrequiredosesofpain

medicationsthatcausesideeffectthatmayhastendeath,suchasimpairingrespiration

• Principleofdoubleeffect:Primarygoalisreliefofsuffering,secondaryoutcomeisrecognizingthatdeathmaybepotentiallyhastened.

Palliativesedation:• Sedatingaterminallyillpatienttothepointofunconsciousness• Intractablepainandsufferingrefractorytomedicalmanagement• Imminentlydying(hourstodays)• Otherlife-sustaininginterventionsheld,“comfortcare”

EthicsanddebatessurroundingPAD

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WhyhavepeopleadvocatedforPAD?

• BrittanyMaynard,29yearold with terminalbrain cancer whoended herlifeinOregonandadvocatedfor PAD

• Viewsthatdeath isanprocess thatisinvariably painful andfullofsuffering.

• Inadequate accesstopalliative care

PADandPatientAutonomy

• Societal trends thatsupport individualautonomy andself-determination

• Societal backlashagainstoverlyaggressivecareattheendoflife

• IsPADasocietal attempt toregaincontroloverdeath?

• Ismorechoice, rather thanguidance andsupport oramore humanistic profession thatfostersa“gooddeath”the best?

Physician asHealerorHarmer?

• Ethical concerns included thephysicians’ oathofnon-maleficence

• “Firstdono harm”– overlyaggressivetreatments attheendoflife, treatments thatdomoreharm thangood

• Whatistheroleofphysician ashealer?Whatabout therole torelievesufferingCommitment toholistic andspiritual healing?Guiding patients through death?

Concerns aboutPAD

• Vulnerable populations (disability, minoritycommunities, elders, unbefriended, etc.)– fearofcoercionandsecondarygain– fearofbeingaburdenasamotivation

• Legalizing PADwithout havingadequatepalliative careresources canbeseenasmorallyproblematic

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ChangingnormsLong-term normative effectsofPADon socialnorms• Perpetuates assumptions that deathisanunbearably painful process

• Createsanethical norm thatdeath canbeaeasysolution toproblems

• Influences perceptions ofself-worth andthevalueoflife, especially amongstdisabilitycommunity (i.e.ableism)

“Slippery Slope”Argument

• EndofLifeclinic inthe Netherlands (secondopinion clinic). In2012, of645applications,25%(162)approved

• Belgium haslegalizedPADinchildren• Depression qualifies forPADinNetherlands

California’s EndofLifeOptionsAct

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TimelineoftheEOLOptionsAct

• ABx215wassigned into lawbyGovernor JerryBrown onOct5,2015

• Lawtogointo effect90daysaftertheclose ofthespecial legislativesession

• Thissession endedonMarch10, 2016• ThelawwillgointoeffectJune 9,2016

1/5oftheUSpopulationnowabletorequestPAD

Population (in millions)United States 318.9California 38.8Washington 7.06Oregon 3.97Montana 1.02Vermont 0.63

California asaWatershed

WhoconsidersPADinOR?(Tolle,2014;OHA,2015)• 98%white• 78%over65years

old• 43%hadatleasta

collegedegree

EndofLifeOptionsAct

Allows terminally illpatients torequest adrug thatwill end thepatient’s life• Must be 18or older and aresident of California• Must have aterminal disease witha prognosis of less

than 6months tolive• Must have thecapacity tomake decisions• Not haveimpaired judgment due toamental disorder• Havethe ability,mentally and physically, totakethe

drug independently• Cannot be requested in advance directive, nor by

surrogates

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MovingForward

• Lawhaspassed, howcanboth sidescometogether toprovide ethical care?

• Regardless ofwhether yousupport it, needtorespond (not necessarily implement)

• Thiswill mostlybeanoutpatient andhospiceissue(90%ofOregoningestions athome, 92%enrolled inhospice)

Howoftendopatientsthinkaboutaidindying?

10%ofdying patients consider PAD

1%of those patients request PAD

1 in10of those whorequest ingest

Howoftendopatientsthinkaboutaidindying?

10%ofdying patients consider PAD

1%of those patients request PAD

1 in10of those whorequest ingest

Whydopatientsaskforaidindying?

• Oregon2015data

http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year18.pdf

SlidecourtesyofLauraPetrillo

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Whattodoifyou getarequest?

Whatthepatientsays: Whatthepatientis thinking:

I’mthinkingaboutaid in

dying?

?

?

SlidecourtesyofLauraPetrillo

Supporting thepatient• Support thepatient, reinforce commitment tofinding anacceptable solution, regardlessofyourpersonal views

• Reflect onyourpersonal viewsonPADanddeathandhow thatmight influence the wayyoucommunicate

• Respond empathetically toemotion

ExploringtheRequest• Clarify what isbeingasked before responding• Explore reasons forthe request• Assesswhether palliative care needs (i.e. painandsymptom control)are being adequately addressed

• Explore other reasons thatmay becontributing tounbearable suffering including family, spiritualorexistential crisis.Take intoaccountpatient’ssupport system

• Evaluate forcapacity andscreen fordepression orother mental health issues

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ExploringtheRequest

• Assessunderstanding ofdiagnosis, prognosisandgoalsofcare

• Assesswhether palliative care needs (i.e. painandsymptomcontrol)are being adequatelyaddressed and intensify symptom managementand treatable causesofsuffering

• Discussalternatives - Hospice referrals, socialwork referrals, etc.

• Helppatient complete POLST, DNRorotherappropriate advanced directive forms

WhatPatientsValue

• Opennesstodiscussing PAD,death, anddying• Theyunderstand PADiscontroversial soappreciate aphysicianwho cantranscendtaboo anddiscussit maturelyandprofessionally

• Important tomaintain therapeutic allianceandsupport patient regardless ofwhetherclinician supports PAD

PhysicianDiscomfortPADoften provokesastrongemotional responsethatmakesconversation palpablyawkward:

“Ilearned that he’sabaseballfanandmuchmorecomfortable ifIchangethetopic tobaseball…it’s awfulwhen youhavetotrytomakethemfeelcomfortable, but that’s thewayitis(Back,2002).”

BiomedicalFocus

“Iknowthat happens, but—what about let’s dothechemotherapy (Back,2002).”

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PADasaGatewaytoTalkingAboutDeath

“The most important events inyour lifeare yourtransitions, yourbirthandyourdeath . .. thebeginning and theendof thisphysicalexistence.Butyoucan’t talk toyourdoctorabout itwithoutthem getting allweird, [thinking] thatyou’resuicidalor something.”

“You’re trying togetadoctor tositdown andlistentoyou .. .buttheynever, ever get theoverallpicture (Back,2002).”

HowisPADAdministered?

TheProcess• Attending physician mustdetermine prognosisandcapacity

• Patient mustmaketwooralrequests atleast15daysapartdirectly to thesamephysician,aswell asonewritten request

• Written request onaspecial formthat iswitnessed andsigned bypatient

• Mustbedonewithout anyoneelsepresent(except interpreter) toinsure voluntariness

TheProcess

• Thepatient mustthen seeasecond physician(consulting physician) whocanconfirmdiagnosis, prognosis, and capacity

• Ifeither physician thinksthe patient mayhaveamental disorder, theymustalsoseeamentalhealth specialist toensure unimpairedjudgment

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TheProcess• Thepatient andphysician mustdiscuss– Howthedrugwillaffectthepatient,andthatdeathmightnotcomeimmediately

– RealisticalternativestoPADincludinghospice,PCandpaincontrol

–Whetherthepatientwantstowithdrawtherequest

–Whetherthepatientwillnotifynextofkin,whether someoneelsewillbepresent,orparticipateinhospice(noneoftheserequired)

TheProcess

• Prescription written• FinalAttestation: Patient mustsignaform 48hours beforetakingdrug sayingtheytookthedrugvoluntarily (newCAaddition)

OptingOutandConscientiousObjection

• Anyprovidercandeclinetoparticipateforreasonsof“conscience,morality,orethics”

• Healthcare institutionscanoptout– Maynotprohibitprovidersfromprovidingdiagnosis,prognosis,counseling,clinicaloptions,orreferraltoaprescribingphysician(exceptVA)

TheIngestionProcess(Orentlicher,2015JPM)

1. Antiemetic (zofran ormetaclopramide) firstadministered

2. 45-60 mins theyingest 9gof ashort-actingbarbiturate (i.e. secobarbital or pentobarbital),

3. The powdered barbiturate ismixed with half acup ofwaterinto aslurry

4. Itshould be ingested quicklywithin 30-120 seconds,otherwise theymay fall asleep before ingesting thefull dose

5. Maydrink juice orliquids but not fattyfoods6. In OR/WA, tomaintain confidentiality, death

certificate usually includes “respiratory failure” ortheunderlying terminal disease asimmediate cause ofdeath

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PotentialComplications(Dunn,Tolle,2008)

• Complications ortechnical problems in10%(Netherlands)

• Delayeddeath(up to48hours)• Regurgitation, nausea/vomiting• Mayleadto EMSactivationand ERvisit• Institutional response willneed toincludeEMT/EDprotocol

BarrierstoPAD

• Lengthyprocess isphysically, emotionally andmentallydemanding.

• Secobarbital costs$3000though privateinsurance andMediCal will cover

• Accessofdrug(i.e.not availableatcornerpharmacy).Pentobarbital not availableintheUS.

• Primary carephysicians maynothaveexperience inPADnor palliative care

HowPADmightaffectyou

• Moraldistress likely tobea significant issue• Morechallenging ifpatient appears “well”• Recognize importance ofinterdisciplinary team.Workwith yoursupport staff including nurses,translators, socialworkers, chaplains, etc.

• Recognize that support staffwill alsoneedtraining andsupport

• Usesupportofpalliative care consultifavailableatyour institution

Unansweredquestions• Should aPC consult be institutionally mandated? Ethics

consult? Psych consult?• Who should administer the drug and go through this

process? The patient’s PMD/attending or aspeciallytrained group? How do youensure continuity andsupport?

• Howwould education and trainingoccur?• Howwould monitoring work?• Will patients be permitted totakethedrug on hospital

grounds?• Howwillinstitutions dealwith individuals opting out?• Howwillreferralswork for institutions thathave opted

out? (i.e. VAMC, Catholic hospitals)• Safe drug disposal?

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Resources• EOLARC website (Password: ethics)http://www.eoloptionacttaskforce.org /re sources.htm l• UCHastings EOLOptions ActFactSheet:http://www.ucconsortium.org /wp-conte nt/upload s/2 015 /12 /FACT-SHEET-End-of-Life-Option-Act-Updated-01.15.16.pdf• AAHPM Position Statement:http://aahpm.org/posit ion s/padb rief• Coalition forCompassionate Carehttp://coalitionccc.org/tools-resource s/e nd-of-l ife-option-act/• CAPC FastFactshttp://www.mypcnow.org/#!bla nk/pbq3 lhttp://www.mypcnow.org/#!bla nk/q24s j• Oregon DeathWith Dignity ActGuidebookhttp://www.eoloptionacttaskforce.org /uploads/2 /4/0/2 /240 2881 0/t he_o regon_death_with_dign ity_act-_a_guidebook_for_health_car e_pr ofessionals.pdf