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Oregon’sDeathWithDignityLaw:SeventeenYearsandLessonsLearned

SusanHedlund,LCSW,OSW-CManager,Patient&FamilySupportServicesKnightCancerInstituteAssociateProfessor,DivisionofHematology/OncologyOregonHealth&SciencesUniversity

Objectives:• ToprovideanoverviewofthehistoryofOregon’sunprecedentedDeathWithDignityLaw

• Toexamineitschallengesandcontroversies• ToconsiderclinicalimplicationsforworkingwithpatientsrequestingDWD

• Disclaimer:itisthisspeaker’sintenttopresentthehistoryanddatacollectedasweknowthem.Itisnotmyintenttopromoteoropposethelegislationitself.

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AboutCatherine*…• In1994,Oregon’sDWDlaw,hadpassed,butwasimmediatelyheldupintheCourts

• Catherine,age47,hadsevereosteoarthritisandanewdiagnosisoflungcancer

• CatherineandhusbandstronglysupportedtheDWDlaw

• IwastheirCancerCounselor

• Catherine’shusbandwasthechiefofpsychiatryinourinstitution…..

• *(namehasbeenchanged)

HistoryofPhysicianAidinDyinginU.S.

• Firsteffort(byballot)Washington1991-defeated• California(byballot)– 1992- defeated

• Oregon(byballot)1994- approved,repealdefeatedin1997)• Washington(byballot)-2008-approved• MontanaSupremeCourtlegalizedin2009• Vermontlegislature,2013approved• California-EndofLifeOptionActsignedintolaw–Oct.2015• Colorado-EndofLifeOptionsAct-2016• DistrictofColumbia-DCDeathwithDignityAct-2017*

• In2017-23StatesandtheDistrictofColumbiahavesoughttocodifythepracticeofphysicianaidindying

• *FederalBudgetwillnotsupportthis

ATurningPoint?• ConstitutionalityandState’sRights

• EvidenceEvaluatingthePracticeofPAD• Incompatibilitywithmedicalpractice?• Devaluinghumanlife?

• Openingthefloodgate?• Disproportionateaccessforthepoor?• AbuseofPAD?

• TurningPointinSocialandEthicalThought

• Gostin,Roberts,JAMAVol.315,No.3,Jan.2016

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ATurningPoint?• Isthetideturning?

“ValuesandBeliefsPoll”- Gallup- 2015:• 7of10peoplepolledinUSarenowfavorablydisposedtopracticeofPAD(increaseof20%overlast2years)

• 18-34yo’s infavorofPADincreasedby19%thisyearaloneto81%

• LegislaturesinMassachusettsandNewJerseyslatedtodebateissuelaterthisyear

• Clodfelter,Adashi- JAMA- Vol.315.No.3,Jan.2016

Issuesremainunsettledandcontroversial

• Proponents:PADrepresentscompassionandbeneficenceandtherighttoexercisefreechoiceandautonomyofwill

• Opponents:PADviolatesdeeplyheldviewsonthesanctityoflife,distortstheimperativeofthehealingmission,devaluestheroleofpalliation,andriskscoercionoftheelderly,disabled,destitute,anddespondent

• Clodfelter &Adashi,JAMA,Vol.315,No.3,Jan.2016

ThePacificNorthwest• HistoricalandCulturalContext

• “pioneer”spirit,ruggedindividualism

• Re-settlement,economics,environmentalism

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Oregon’sDemographics• Ruralvs.urbandemographics• Growingpopulation:1950- population,1.5million,by2020projectedpopulationwillbe4.3million

• Oregon’slifeexpectancyisslightlyhigherthattheUnitedStatesforbothwomenandmen

• Largelyhomogenousracially• White- 78%• Hispanic- 12%(mostrapidlygrowinggroup)• AsianandPacificIslanders-4%• AfricanAmerican-2%• Native(Indian)American2%• 2ormoreraces- 2%

• OregonStateCensus-2012

Oregon’sReferendumProcess• “progressivedemocracy”,est.1902

• Allowsvoterstoproposelegislation,andvoteonproposal

• MarkedOregonasapioneerstateinthe“progressivemovement”

• Oregon’sDeathWithDignityActwasestablishedthroughthisprocess

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Oregon’sUniqueHistoryinEndofLifeInitiatives• OneofthefirstStateswithAdvancedDirectives(1977)

• HealthCarePowerofAttorney(1980)

• FirstStatetocombinethetwo(1980)

• OneoftheStatestodemonstrateMedicareHospiceDemonstrationProject(1980’s)

Oregon’sUniqueHistory(cont.)

• RighttoHospiceandComfortCare(1989)

• Righttopainrelief(1993)

• Righttorefuseorwithdrawtreatment(1993)

WheredoOregonian’sDie?• Oregon’shospitaldeathrateisamongthelowestinthecountry

• Oregonhomedeathrateisamongthehighest

• Oregon’shospicepenetrationrateisamongthetop5or6

• Oregon’scostofEOLcareislowest,withhighsatisfaction

• LessonsfromOregoninEmbracingComplexityinEndofLifeCareTolle,S.andTeno,JM-NEng JMed-3/16/2016

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AccesstoPalliativeCare• Receivedan“A”fromCAPC’sReportCard- America’sCareofSeriousIllness

• 100%ofhospitalsinOregonwithgreaterthan300bedshavepalliativecareteams.

• America’sCareofSeriousIllness,State-by-StateReportCardonAccesstoPalliativecareinOurNationsHospitals- 2015

• CentertoAdvancePalliativeCare

OregonDeathwithDignityAct

• Passedbyacitizen’sinitiativein1994(51%to49%)• Seriesoflegalchallenges• Repealreferendumdefeated11/97(60%-40%)• DEAthreatensphysicians11/97• Renoreversal4/98• Ashcroftre-reversal11/01

OregonDeathwithDignityAct• 2002,Ashcroftappealedtothe9th USCourtofAppealstooverturnDistrictCourt’sruling

• May,2004,Ashcroftvs.Oregon,USCourtofAppealsdecidesthatControlledSubstanceActdoesnotapplytoOregon’sDWDLaw

• Current-Oregon’sDeathwithDignityLawstands

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Otherhistory• MediaCoverageandpubliceducationeffortswereintenseprecedingthe1994and1997votesonDeathwithDignity

• Publicawarenesswasraisedregardinghospice,painmanagement,andendoflifecare

• TheTaskForcetoImprovetheCareofTerminallyIllOregonianswasestablished

TaskForcetoImprovetheCareofTerminallyIllOregonians• Aconsortiumofhealthprofessionalorganizations,agencies,andinstitutionswhichsoughttopromoteexcellentcareofthedying

• ToaddresstheethicalandclinicalissuesposedbytheenactmentoftheDeathwithDignityAct

• Wewerechallengedtomaintainaneutralposition

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TheTaskForcetoImprovetheCareofTerminallyIllOregonians• ConvenedbytheCenterforEthicsinHealthCarefromOregonHealth&SciencesUniversityand3otherEthicsCentersfrommajorhealthsystemsinPortland

• Representativesfromhealthsystems:AdventistMedicalCenter,Dept.ofVeteran’sAffairs,LegacyHealthSystem,ProvidenceHealthSystem,KaiserPermanente,OregonHealth&SciencesUniversity

• RepresentativesfromStateBoards: HealthLawSection,OregonStateBarAssociation,OregonBoardofMedicalExaminers,OregonBoardofPharmacy,OregonHealthDivision,OregonHospiceAssociation,OregonNursesAssociation,OregonPsychiatricAssociation,OregonPsychologicalAssociation,StateEMS,NationalAssociationofSocialWorkers,AssociationofOncologySocialWork

Taskforcemission:• Toshareinformation,experience,andunderstandingofavailableresourcesforthecareofterminallyillOregoniansandassistindevelopmentofresourceswhereneeded

• FacilitatethedevelopmentofprofessionalstandardsrelatingtotheDeathwithDignityAct

• Developandcoordinateeducationalresourcesonallaspectsofcompetentandcompassionatecareofterminallyillpatients

• Fosterrelationshipsandnetworkingoncareoftheterminallyill

ProvisionofODWDA• Allowsterminally-illresidentprescriptionforself-administeredmedicationtoendlife

• EndinglifeundertheActisnotconsideredsuicide

• Prohibitseuthanasia

• “physician-assistedsuicide”hasbeenreplacedwith“physicianaidindying”or“medicallyassisteddeath”

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PatientRequirements• Oregonresident*

• 18yearsofage

• “Capable”(abletomakeandcommunicatehealthcaredecisions)

• Terminalillnesswith6monthsorlesstolive• (ifthepatienthasaterminalorchronicillness,buttheirlifeexpectancycannotbe

predictedwithinreasonablemedicaljudgmenttobelessthan6months,thenhe/sheisnoteligibletousetheAct).

• Requestmustbevoluntary

• *thereisnominimumlengthoftimetoestablishresidency-ItmustbedemonstratedbyaDriver’sLicense,leaseorpropertyagreement,taxreturn,voter’sregistration.Physiciansseemtohonorboththeletterandspiritofthelaw,andaremorelikelytoworkwithpeoplewithsignificanttiestotheState.

PrescriptionRequirements• 1writtenrequest,2witnesses

• 2verbalrequests,15daywaitingperiod

• Prescribing&consultingphysiciansmustconfirmdiagnosis/prognosis,determinepatientcapability,considermentalhealthreferral

• Patientinformedofalternatives(ie:palliative,hospicecare)

• Legalprotectionsforpatient,MD’s,pharmacist

Whatisprescribed?• UsuallySeconal.(Secobarbital)Alethaldoseis100tablets,100mg.

• Usuallycapsulesareemptiedofthepowdereddrugandstirredintoaliquid.Patientsmustingestitquicklytoavoidfallingasleepbeforeallisingested.

• Currentcostisapproximately$4300,andmostinsurancesdonotpayforthis.

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OregonHealthDivisionData

• Sincethelawwaspassedin1997,totalof1,749peoplehavehadDWDAprescriptionswrittenand1,127havediedfromingestingmedicationsprescribedundertheDWDA

• During2016,therateofDWDAdeathswas37.2per10,000totaldeaths.

Patientcharacteristics• Ofthe133DWDAdeathsduring2016,mostpatients(80.5%)wereaged65yearsorolder.Themediandeathwas73years.Asinpreviousyears,decedentswerecommonlywhite(96.2%)andwell-educated(50.0%hadatleastabaccalaureatedegree).

• Patient’sunderlyingillnessesweresimilartothoseofpreviousyears.Mosthadcancer(78.9%),followedbypatientswithamyotrophiclateralsclerosis(ALS)(6.8%).Ofnote,6.8%ofpatientshadheartdiseaseastheirunderlyingillness,anincreasefrom2.0%duringprioryears.

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OregonHealthDivisionData• Mostdiedathome(88.6%)andmost(88.7%)wereenrolledinhospice

• Excludingunknowncases,most(99.2%)hadsomeformofhealthinsurance

• Similartopreviousyears,thethreemostfrequentlymentionedend-of-lifeconcernswere:• decreasingabilitytoparticipateinactivitiesthatmadelifeenjoyable(89.5%)

• Lossofautonomy(89.5%)• Lossofdignity(65.4%)

• LosingAutonomy91.5%• Lessabletoengageinactivitiesmakinglifeenjoyable88.9%• Lossofdignity80.6%• Losingcontrolofbodilyfunctions50.1%• Burdenonfamily,friends/caregivers40%• Inadequatepaincontrolorconcernsaboutit23.7%• Financialimplicationsoftreatment2.9%

EndofLifeConcernsOregonPublicHealthDivision(1998-2015N:994)

OregonHealthDivisionData

• In2016,5ofthe133patientswerereferredforformalpsychiatricorpsychologicalevaluation

• Prescribingphysiciansoranotherproviderwerepresentatthetimeofdeathfor27patients

• Among27patients,timefromingestionuntildeathrangedfrom5minutesto34hours.

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Whathavewelearned?• K.HedbergandS.Tollewrotein2009:• “thevastmajorityofOregondecedentsareeithernotinterestedin,oraremedicallyineligibletoparticipateinDWDA”

• Manyaremedicallyineligiblebecausetheydon’tmeettherequirementofhavinga6monthprognosis,andothersopposethelaw.

• Othersarenotdeemed“capable”ofmakingthedecision,ordiewithinthe15daywaitingperiod

• OneinonethousandOregonianswhodieannuallyusetheAct.*

• Hedberg,Tolle,TheJnlofClinicalEthics,Vol.20,No.2,2009

• *(Per2015dataitis4per1000deaths.)

Whathavewelearned?• Hedberg,Hopkins,Leman,Kohnwrotein2009:

• 10yearsafterlegalization,thelawremainedcontroversial.

• Proponentsandopponentsdisagreeonterminologybecauseoftheconnotationofthelanguage- Proponentsprefer“physicianaidindying”,“hasteneddeath”,and“deathwithdignity”.Opponentsprefer“physicianassistedsuicide”.

• Theterms“suicide”and“dignity”havepoliticalimplications

• Controversialissuesnotaddressedinthelaw:theactoutlinesrequirementspriortotheprescriptionbeingwritten,butnottheproceduresafteramedicationisdispensed(i.e.:Itdoesnotrequireaprescribingphysiciantofollowthepatientovertime,nortoreassessapatientforadeclineincognitivefunction.)

• Severalstudieshavefoundapatient’sinterestfluctuatesovertime,thusitmaybeprudenttohaveanongoingdiscussionwithpatientstoassurethatend-of-lifeconcernsarebeingmet.

ImpactonPhysicians• In2000only1/3ofphysicianspotentiallywillingtoprescribe

• Areasofdiscomfort:• Concernsaboutmanagingsymptoms• Notwantingtoabandonpatients

• Incompleteunderstandingofpatients’preferences• Largeinvestmentoftime• Emotionallyintense

• Ganzini,etal,2000;Dobscha etal2004

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Whathavewelearned:• DataregardingOregon’sexperiencewithDWDAareimportantforongoingpolicydebate.

• Oregon’sdemographicsmaybedifferentandnotreadilyapplicableelsewhere:• Oregon’sresidentsaremostlyWhite• Least“churched”Stateinthenation• Endoflifepractices(Oregonhashighlevelsofhospicecoverageandadvancedcareplanning)

• Nonetheless,providesanimportantperspectiveasajurisdictionthatallowsself-ingestionofalethalmedicationbutnoteuthanasia.

• JnlofClinicalEthics,Summer2009-Hedberg,Hopkins,Leman,&Kohn

Earlyfears- notfounded:• DWDAwillbedisproportionatelyusedbythedisabled,theuninsured,thepoorandthevulnerable(datasuggeststheoppositeistrue).

• OregonwillbefloodedwithpeoplemovingtotheStatetopursuethisoption.(noevidencetosupportthis).

• Insurancecompanieswillhaveaninfluenceinwhochoosesthis.(noevidencetosupportthis)

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Otherlessonslearned• Manyhealthcareprovidersearlyonfeltuncertainaboutthelaw(Miller,Messler,&Eggman,2002,Harvathetal,2006)

• Hospicecaregiversfeltparticularlychallenged:“ifweweredoingourjobswellenough,patientswouldnot

pursuethisoption”.(Milleretal–p.59)

• 16yearsofdatahasshownthatPADareusuallymotivatedbyconcernsnoteasilyamelioratedbyhospicecare

• Asurprisingfindingfromstudieswasthelackofimportanceofpaininarequest

• Desiretomaintainindependence,self-care,andqualityofliferemainimportant

LessonsLearned• Inthefirstfewyearsafterlegalization,mostpatientswerereferredforformalpsychiatricassessments.Thispracticelessonedovertheyearsapparentlyforseveralreasons:

• Veryfewpatientsmakingtherequestwerefoundtobeclinicallydepressed-ratherweredeterminedintheirwishfor“control”

• Depressedpatientsseemtolackthe“where-with-all”tofollowtheprocessthroughthelegalchannels

• Greaterfamiliarityand“comfort”withthelaw,basedondataaboutthosewhochosetopursuePAD

PrevalenceofdepressionandanxietyinpatientsrequestingPAD• Physicians,hospiceprofessionals,andfamilymembersdonotbelievethatdepressioninfluenceschoicesforhasteneddeath

• Healthcareprofessionalsmayfailtorecognizedepressionamongthemedicallyill

• 17%ofOregonianspotentiallyinterestedinaidindying,only1-2%actuallyrequestit.

• Conclusions:mostpatientswhorequestaidindyingdonothaveadepressivedisorder.

• IncreasedvigilanceandsystemicexaminationfordepressionamongpatientswhomayaccessPADisneeded.

• Ganzini,Goy,Dobscha,BMJ,2008

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Lessonslearned

• “Theseindividualshighlyvaluecontrolanddislikedependenceonothers;thisoftenrepresentsastrongenduringvalue,aphilosophyanddefininglife-longpersonalityattribute.”

Ganzini,etal,2014

(yetagain,itisnotsomuchabout“us”– thehealthcareprovider,itisabout“them”- thepatient:whotheyare,whatismostimportanttothem.)

ClinicalimplicationsSo,whatdoesthismeanclinicallyforuswhenapatientinquiresaboutthelaw,orindicatesthedesiretopursueOregon’sDeathwithDignityoption?

Inmanyways,itoffersustheopportunitytoexploremoredeeply:• Thereasonsfortherequest• Themeaningbehindit• Otherissuesthatneedtobeaddressed

(symptommanagement)• ExistentialconcernsRelationshipissues

ExploringinquiriesaboutPhysicianAssistedDeathPatientConcernsandUsefulClinicalQuestionsPatientisworriedaboutfuturesuffering:“Icanseewhat’sgoingtohappenandIdon’tlikeit.”

• Whatareyoumostworriedabout?

• Tellmemoreaboutwhatexactlyfrightensyou.

• Whatkindsofdeathshaveyouseeninyourfamily?

• HowareyouhopingIcanhelpyou?

• Quill,Back,&Block,JAMA,Vol.315,No.3,Jan.2016

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ExploringInquiriesAboutPhysician-AssistedDeathPatientConcernsandUsefulClinicianQuestionsPatientfeelsqualityoflifeisintolerable:

“I’vesufferedenough”

• Whatmakesyoursituationmostintolerablerightnow?

• Tellmemoreabouttheworstpart.

• Howdoyouthinkyourfamilyfeelsorwouldfeelaboutyourwish?

• ExactlyhowareyouhopingIcanhelpyou?• Quill,Back,Block,JAMA,Vol 315,No.3,Jan.2016

ApproachtopatientwhorequestsPAD• Clarifyrequest- patientsmayinfactbeaskingforreassuranceaboutfuturepain,symptoms• Forsomepatients,requestingPADiseasierthanexpressingfearsaboutthefuture

• Explorereasonsforrequest,fears,worriesaboutthefuturesourcesofsuffering

• Encouragehospice-mostcomprehensivewaytoaddressconcerns• Hospicemayincreasesenseofcontrol

• Patienthascontrolabouthowmuchhospicetheyreceive• EducationaboutalternativestoPAD

ApproachtopatientwhorequestsPAD• Ifindicated,exploreimminentriskofsuicide(suicideriskassessment,accesstoguns,etc.)

• Ruleoutdepressionorothermentalillness• StartwithdepressionscreeninginstrumentssuchasPatientHealthQuestionnaire(PHQ9)

• Assuredecisionmakingcapacity(doespatientunderstandrisk,benefits,alternatives,etc.?)

• Discussimpactonfamily

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Whenthepatientexpressesadesiretodie:Theintentcanonlybecomeclearbyexploringit:• Thepatientmaybeoverwhelmedwithfeelingofbeingaburden- (familyconference?)

• Thepatientmayhavephysicalsymptomsdegradingqualityoflifethatarenotfullyaddressed-(advocacywithmedicalteam?)

• Itmaybegivingvoicetopsychologicalorspiritualdistress(furtherassessment,faithpractitionerinvolvement?)

• He/shemaybe“practicing”anidea- (simplysharedinatrustedrelationship)

• Thepatientmaysimplyhaveneverfollowedthedesiretodiestatementstotheirlogicalconclusion

• (Schroepfer,Linder,Miller-2014)

Desiretodieinterminallyillpeople

• “desiretodie”statementsmadebypeoplewithterminalillnessmaybeexpressionsofdepression,suicidalintent,orcoping

• Differentiatingamongpatients’meaningsinthiswayleadstoappropriateinterventions

• DesiretoDieinTerminallyIllpeople:AFrameworkforAssessmentandIntervention,NationalAssoc.ofSocialWorkers,1999,RuthAnn VanLoon

Desiretodiestatements• Twoassumptions:• 1.Expressingadesirefordeathisassumedtobecommonandthereforea“normal”responseto,andwayofcopingwith,terminalillness

• 2.Adesirefordeathiscommonlythoughttobetheresultofdepression,andmanypeopleconsiderdepressionanormalandexpectedresponsetoterminalillness(Valente,Saunders,Cohen,1994)

• Theempiricalevidencesuggeststhatitisnot,buttheassumptionofnormalitymeansthatdepressionmaybeneglectedoruntreatedintheterminallyill(Billings&Block,1995)

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DesiretoDievs.Depression• Onestudysuggestsmorethan44%ofpatientsadmittedtoapalliativecareunitexpressedanoccasionalwishtodie,butatfollowup2weekslater,only8.5%continuedtoexpressthiswish Chochinov,etal,1995

• Anotherstudysuggestedthatdepressionwascorrelatedwithdesirefordeath,butnotcontemplationofsuicide

• Owenetal1994

• Painandlackoffamilysupportcouldexacerbatedepression• Chochinov etal,1995

• Thesefactorswerenotlinkeddirectlywithdesiretodie• Breitbart,Rosenfeld,&Passik,1996

Depression,Hopelessness,andDesireforHastenedDeath• Interminallyillcancerpatients:• Desireforhasteneddeathisnotuncommon

• Depressionandhopelessnessarethestrongestpredictorsforhasteneddeathinthispopulation

• Depressionandhopelessnessarenotidentical,thusclinicalinterventionsshouldbetailoredselectively

• Majordepressioncanbeeffectivelytreated,eveninterminalillness,butnoresearchhasaddressedwhethersuchtreatmentinfluencesthedesireforhasteneddeath.

• Breitbart,Rosenfeld,Pessin,Kaim,Funesti-Esch,Galietta,Nelson,Brescia- JAMA,Dec.2000,Vol.284,No.22

FrameworkforAssessmentVanLoon-1999

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Desiretodietalkascoping• Usedtopromotefeelingsofcontrol

• Inviteadiscussionofexistentialconcerns

• Elicithelp

• Expressionof“readiness”

DesiretoDietalkasRationalChoice

• ComponentsofaRationalChoiceforSuicide• Thepersonhasarealisticassessmentofthesituation*• Theperson’smentalprocessesareunimpairedbypsychologicalillnessorsevereemotionaldistress*

• Thepersonhasamotivationthatwouldbeunderstandabletoamajorityofuninvolvedcommunitymembers

• Thedecisionisdeliberatedandreiteratedoveraperiodoftime• Wheneverpossible,thedecisionshouldinvolvetheperson’ssignificantothers

• Asubstanceabusedisorderoracuteintoxicationprecludesrationalityasdescribedabove.

• Sources:a:Siegel,K.1986,b:Werth,(1995),c:Forstein(1994)

Surveyofhospicesocialworkers

• “considerationofhasteningdeathamonghospicepatientsdoesnotappeartobearareevent.”

• Arnold,Artin,Person,Griffith(2004)

• InOregon,issuesinvolvedpatientautonomy,self-determination,qualityoflife,spiritualconcerns,advocacy.

• Haworth,etal,2006)

• OtherthemesinOregon:unfinishedbusiness,patientautonomy,advocacy,empowerment.

• Miller,Hedlund,Soule,2006

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Annie……• 57yearoldwomanwith15yearhistoryofbreastcancer

• Metastaticdiseasefor5years;recentspinalcordcompression

• PatientandhusbandsupportersofPAD

• Iwastheirtherapist

• Shechosetoendherlifewithaprescriptionofmedicationatalethaldose

Yalom’swisdom

• Theexplorationandconsiderationofendingone’slifewhiledying“permitsonetocontrolthatwhichcontrolsone”.

• IrvinYalom

• Itmaybepartofhowwe,ashumans,questionourfateandourexamineourmortality.

Practiceimplications• Theprofessionalmustbeawareofhisorherownreactionstodesiretodiestatements,becausethesewillinfluenceconversationswiththepatient

• IfunabletosupportPAD,importanttorefer

• Itisimperativetofindmeaninginthepatient’swordsandcontinuetoassessconcerns,mentalhealth,andintent.

• Italsorequirestheabilityto“sitwithsuffering”,bearwitnesstoquestionsandconcerns,andtoleratenotbeingabletofixeverything

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• “wecan’tmakejudgments….everybodywhogetsinvolvedinthis(discussionsofhasteneddeath)…useitasanopportunity.Itisnotjustanopportunityforthepatients,tolookinsidethemselves,butitisanopportunityforalloftheteam,thefamily,andthecaregiverstodoit….towalkwithsomeonedownthepath,thattheyreallydotakesometimetolookinsidetheirhearts.”

• Miller,Mesler,&Eggman (2002)