CANADIANCENTREFORELDERLAW1822EastMall,UniversityofBritishColumbiaVancouver,BritishColumbiaV6T1Z1Voice:(604)8220142Fax:(604)8220144E-mail:bcli@bcli.orgWebsite:www.bcli.org

RevisedMarch8,2017

HealthCareConsent,AgingandDementia:MappingLawandPracticeinBritishColumbia

BACKGROUNDER

Introduction

TheCanadianCentreforElderLaw(“CCEL”),incollaborationwiththeAlzheimerSocietyofBritishCo-lumbia(“TheSociety”),isembarkingonaprojectwhichexaminesthelaw,policyandpracticeofconsenttohealthcareinthecontextofageinganddementia.This16-monthprojectfundedbytheLawFounda-tionofBritishColumbiawillinvolveextensivecomparativelegalresearchoninformedconsentandin-terrelatedareasofthelaw,aswellascommunityandkeystakeholderconsultation.Theworkwillbein-formedbyanexpertinterdisciplinaryadvisorycommitteeandwillculminateinareportidentifyingareasforlawandpracticereformandatleastoneplainlanguageeducationalresourceonhealthcareconsentrights.

Objectives

Thisprojectaimsto:

• Documenttheexperiencesofpeoplewithdementia,theirsubstitutedecision-makersandthepeoplewhosupportthem,withrespecttouseofmedicationandconsentinBC;

• SummarizethelawinBCwithrespecttohealthcareconsent;

• Mapknowledge,policyissues,andlegalconcernsrelatedtotheuseofantipsychoticsandanti-depressantsforpeoplewithdementia;

• Bridgeawidevarietyofsocialpolicyresearchwithimplicationsforlegalpractice;

• IdentifydifferingandinnovativeapproachestakeninotherjurisdictionsinCanadaandtheUnitedStatesaswellastheUnitedKingdomandAustraliavis-à-vislawandpolicyaroundhealthcareconsent,particularlywithrespecttoolderadults;

• SuggestpotentialareasforlawreforminBC;

• RaisefurtherawarenessontherighttoinformedhealthcareconsentamongBritishColumbians;

• Produceafoundationofresearchthatwillsupportthekeypeopleengagedinthisissuetoap-preciatethetopicfromaperspectivethatrespectstherightsofolderadults,peoplewithde-mentia,substitutedecision-makers,familymembersandthosewhosupportpeoplereceivingtreatment;and

HealthCareConsent,AgingandDementia:MappingLawandPracticeinBC,ProjectBackgrounder 2

• Publishatleastonepubliclegaleducationresourceforpeoplewithdementia,substitutedeci-sion-makersand/orlovedonesfocusedonhelpingpeopletounderstandtheirrights.

ProjectMethodology:

TheProjectwillinvolvethefollowingactivities:

• EstablishingadiverseprojectadvisorycommitteethatwillmeetapproximatelysixtoeighttimestoguidetheworkoftheCCELandTheSocietyasneededonthisProject;

• Interviewingarangeofexpertsonthetopicofmedication,informedconsentandolderadultswithdementia;

• Holdingaseriesoffocusgroupsprovidingpeoplelivingwithdementia,familymembersandsub-stitutedecision-makerswithanopportunitytosharetheirexperiencesinrelationtoinformedconsent,medicationandtreatmentforadultslivingwithdementia;

• UndertakingacomprehensivereviewofrelevantlegislationandjurisprudenceinBC;

• CompletingcomparativeresearchconsideringkeyjurisdictionsinCanadaandabroad,suchasOntario,theUnitedKingdomandAustralia;

• Completingaliteraturereviewonthesubjectincludingsocialscienceacademicmaterialfromjournalsandreportsaswellaspublicationsfromthelegalcommunity;

• ProducingareportthatmakesrecommendationsforlawreformforBCfollowingasummaryof:

o Theviewsandconcernsofkeyprofessionalstakeholdersonthesubjectofmedication,useofchemicalrestraintsandtreatmentofolderadultswithdementia;

o Findingsfromourinterviewswithpeoplewithdementia(whohavecapacitytoconsenttoparticipate),substitutedecision-makers,familymembersandthosewhosupportthemregardingmedication,useofchemicalrestraintsandtreatmentofolderadultswithdementia;

o Relevantlegislation;and

o Legalmodelsandlegislativeprovisionsfromotherjurisdictionsofnote;

• Reviewingexistingpubliclegaleducationresourcesontherighttoinformedconsenttohealthcareanddevelopingastraight-forwardplainlanguageresourceforBC.

RationalefortheProject

ProvincialandterritorialdatafromStatisticsCanada2011CensusshowsthatBChasoneofthelargestgrowingpopulationsofseniorsinCanada.AsourpopulationcontinuestoagemanyBritishColumbianswillbeaffectedbydementia.Althoughdifficulttoestimate,researchsuggeststhatbetween60,000and70,000BritishColumbianshavedementia1,andmanymoreareaffectedbydementiaascaregivers,sup-portingfamilymembers,friendsandlovedones.

1MedicalServiceEconomicAnalysis,HealthSystemPlanningDivision,MinistryofHealth,Dementia(age45+yearsonly)January17,2011,project2010_372.CentreforAppliedResearchinMentalHealthandAddictions,SimonFraserUniversity,2006.

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Inrecentyearsanumberofstudieshaveraisedconcernsregardingpotentialovermedicationofolderadults,especiallytheuseanti-psychoticsandanti-depressantstomanagebehavioursassociatedwithdementia.Forexample,a2011MinistryofHealthreportrevealedbothsignificantuseofantipsychoticsandconcernsregardinglackofappropriateconsenttotreatmentandengagementoffamilyindevelop-ingcareplans.2Thenin2015theBCSeniorsAdvocateidentifiedtheoveruseofbothantipsychoticsandantidepressantsinresidentialcareasanareaofgreatconcern,reportingthatonly4%ofseniorsinresi-dentialcarehaveadiagnosisofapsychiatricdisorder,yet34%ofthisclientgroupareprescribedanti-psychoticmedications.3Theuseofantipsychoticsinresidentialcareisprimarilyinresponsetothein-creasingnumberofresidentswithdementia.4Accordingtothe2015BCSeniorsAdvocate’sreport,itisestimatedthatupto51%ofresidentsinBCcarefacilitiesaretakingnineormoredifferentmedications.5

Chemicalrestraintsareanyformofpsychoactivemedicationusednottotreatillness,buttointention-allyinhibitaparticularundesirablebehaviourormovement.Antipsychoticsmaybeclassifiedasachemi-calrestraintiftheirprescriptionisnotintendedforthetreatmentofschizophreniaorarelateddisorder.

Therearemanyconcernswiththeuseofchemicalrestraintsinresidentialcare,including:

• Antipsychoticmedicationsarenotintendedtotreatthesymptomsofdementiaandthereisnotrobustevidencetosupporttheiruse;6

• Seniorswhohavealargenumberofprescriptionmedicationsprescribedtothemareatanele-vatedriskofadverseevents,inpartbecausepotentialsideeffectsanddruginteractionsareof-tennotexplainedtothem7,ortheirsubstitutedecision-maker;and

• Sideeffectsofantipsychoticsrangefromunpleasanttodebilitatingandcanpotentiallyleadtomisdiagnosisofconditions,suchasParkinson’s,resultinginevenmoreincorrectlyprescribeddrugs.

Overall,despiteageneralknowledgethatallantipsychotics,whethertypicaloratypical,areassociatedwithincreasedmorbidityandmortalityinpersonswithdementiaandshouldbeusedwithcaution8,anti-psychoticscontinuetobeprescribed.

Inresponse,resourceshavebeendevelopedtosupportenhancedpractice.Inparticular,BCCareProvid-ersAssociationpublishedaBestPracticesGuideforReducingAnti-PsychoticDrugUseinResidentialCare

2BritishColumbiaMinistryofHealth,“AReviewoftheUseofAnti-psychoticDrugsinBCResidentialCare”,Decem-ber2011,online:http://www.health.gov.bc.ca/library/publications/year/2011/use-of-antipsychotic-drugs.pdf3OfficeoftheSeniorsAdvocate,“Placement,DrugsandTherapy:WeCanDoBetter”,Report#3,April2015,online:https://www.seniorsadvocatebc.ca/wp-content/uploads/sites/4/2015/09/PlacementReport.pdf(“Place-ment,DrugsandTherapy”)4BritishColumbia,MinistryofHealth,BestPracticeGuidelineforAccommodatingandManagingBehaviouralandPsychologicalSymptomsofDementiainResidentialCare:APerson-CenteredInterdiscplinaryApproach(2012),online:http://www.health.gov.bc.ca/library/publications/year/2012/bpsd-guideline.pdf[BCMinistryofHealth].5SeniorsAdvocate,“Placement,DrugsandTherapy”.6HealthCanada,2005,http://healthycanadians.gc.ca/recall-alert-rappel-avis/hc-sc/2005/14307a-eng.php7Reason,B.,Terner,M.,McKeag,A.M.,Tipper,B.,&Webster,G.(2012).TheimpactofpolypharmacyonthehealthofCanadianseniors.Familypractice,29(4),427-432.8BCMinistryofHealth,supranote4.

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in2013,9andtheBCMinistryofHealthpublishedBestPracticeGuidelineforAccommodatingandMan-agingBehaviouralandPsychologicalSymptomsofDementiainResidentialCarein2012.10However,thereremainsaneedtoadeveloparights-basedunderstandingofhealthcareconsenttosupplantthedominanthealthcareorientation.Thereisalsoaneedtodevelopresourcestoassisthealthcaredeci-sion-makers,healthcarestaff,olderadultsandtheirlovedonestounderstandthescopeoftherighttoinformedconsent.

Theuseofprescriptionofmedicationtomanagesymptomsofdementiaraiseslegalissuesrelatedtohealthlaw,substitutedecision-makinglegislation,workplacesafetyandhumanrights.Decisionsregard-ingmedicationhaveasignificantimpactonqualityoflifeandlifeexpectancy,andolderpeopleandsub-stitutedecision-makersoftendonotappreciatetherighttoaskquestions,explorealternativesandpro-videconsent.Olderpeoplelivingwithdementiaareavulnerable,growingsubsetofBC’spopulation;however,ultimatelytheissueofconsenttohealthtreatmentmatterstoeveryone,andtheresearchofthisprojectwillsupportarobustunderstandingoftherighttoinformedconsentinBCwhichwillbenefitanyonereceivingtreatmentorconsentingtotreatmentonbehalfofanother.Inparticular,projectfind-ingswillbeofbenefittopeoplelivingwithdisabilitiesotherthandementia,aspeopleinothercommu-nities,suchasthecommunitylivingsector,sufferfromexclusionfromhealthcaredecision-makingduetoassumptionsaroundmentalcapacityandlackofrespectfortherighttoinformedconsent.

LegalBackground

HealthCareConsentLaw

InBritishColumbia,thelawofhealthcareconsentforadultsisgovernedprimarilybytheHealthCare(Consent)andCareFacility(Admission)Act(“HCCA”).11PursuanttothisAct,everyadultispresumedca-pableofgiving,refusingandrevokingconsenttohealthcare12andahealthcareprovidercannotprovidehealthcarewithoutfirstobtainingtheadult’sconsent.13Healthcareisdefinedas“anythingthatisdoneforatherapeutic,preventive,palliative,diagnostic,cosmeticorotherpurposerelatedtohealth…”.14Thelegislationsetsouttheelementsandscopeofconsent15andthethreelimitedexceptionstotherequire-menttoobtaintheconsentoftheadult:incapacity16,emergency17andpreliminaryexamination.18Im-portantly,thelegislationalsosetsoutindescendingorderofhierarchywhomayactasatemporarysub-stitutedecision-makerincasesofincapacity.TheActissaidtobeacodificationofthecommon-lawdoc-trineof“informedconsent”.

9BCCareProvidersAssociation,BestPracticesGuideforReducingAnti-PsychoticDrugUseinResidentialCare:En-suringResidentialCareHomesareSafePlacestoLiveandWork(2013),online:http://www.bccare.ca/wp-con-tent/uploads/Anti-Psychotics-Guide-hr-06-05-13.pdf.10BCMinistryofHealth,supranote4.11R.S.B.C.1996,c.181(“HCCA”).12HCCA,s.3.SeealsoRepresentationAgreementAct,s.3.13HCCA,s.5.14HCCA,s.1.15HCCA,ss.6-9.16Ifpatientfoundincapable,mayobtainconsentfromSDM:s.11(personalguardianorrepresentative)ands16(TSDM)HCCA.17Urgentoremergencyhealthcare:“inordertopreservetheadult'slife,topreventseriousphysicalormentalharmortoalleviateseverepain”,s.12HCCA.18To“undertaketriageoranotherkindofpreliminaryexamination,treatmentordiagnosis”,s.13HCCA.

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TheResidentialCareRegulationdealswithconsentinthecontextoftheuseofchemicalrestraints.19OnlyafewCanadianprovinceshaveenactedhealthcareconsentlegislation,theremainderpreferringtorelyonthecommonlawdoctrine.20

AfullexaminationofhealthcareconsentlawsinBritishColumbiarequiresareview,notonlyofthecommonlawdoctrineofinformedconsentandstatutoryconsentlaws,butofthebroaderlegalframe-work.Thisprojectendeavourstocontextualizeconsentlawswithinthisbroaderlegalframeworkbyalsoconsideringthefollowinginterrelatedareasoflaw:

CapacityandSubstituteDecision-Making

Whereadultsarefoundincapable,healthcareprovidersmustobtainconsentforhealthcaredecisionsfromtheirsubstitutedecision-makersormakedecisionsinaccordancewithanyadvancedirective.Ad-vancedirectivesprovidelegallybindinginstructionstohealthcareprovidersregardingwhichhealthcareapersonconsentstointhefutureshouldtheybecomeincapableandtheyaregovernedbytheHCCA.Substitutedecision-makersmaybe:

o RepresentativesundertheRepresentationAgreementsAct

o Temporarysubstitutedecision-makersundertheHealthCare(Consent)andCareFacility(Admission)Act

o CommitteesofthepersonunderthePatientsPropertyAct

MentalHealthandInvoluntaryCommittalLaws

InBritishColumbia,apatientinneedofpsychiatriccarecanbeinvoluntarilycommittedtoadesignatedpsychiatricfacilityandtreatedwithouttheirconsent:pursuanttos.31(1)oftheMentalHealthAct,treatmentofaninvoluntarypatientwhichisauthorizedbythedirectorofthefacilityis"deemedtobegivenwiththeconsentofthepatient".21Thisprovisioneffectivelyenablesadultswithdementiatobeadmittedtoresidentialcarefacilitiesandtobeprescribedantipsychoticmedicationswithoutthecon-sentoftheadultortheirsubstitutedecision-maker.This“deemedconsent”provisionisatoddswithleg-islationinotherprovinces,suchasOntario,wherebyconsentmustbegivenbytheadult,orbytheadult’ssubstitutedecision-maker.22TheabilitytousechemicalrestraintsunderOntarioisverylimited.The“deemedconsent”andrelatedprovisionsarecurrentlysubjecttoaCharterchallengeintheSu-premeCourtofBC.23

HealthCareRegulationandProfessionalResponsibility

Inadditiontoprovincialhealthcareconsentlaws,regulatedhealthcareprofessionsarerequiredtocomplywiththeirgoverningbodies’codesandstandards,andareguidedbyinternalguidelinespro-ducedbythem.Somesuchgoverningbodieshavestandardsand/orguidelinesspecificallyaddressing

19ResidentialCareRegulation,ss.73-75.20Ontario,BritishColumbia,NewBrunswick,PrinceEdwardIslandandYukonhavehealthcareconsentstatutes.21MentalHealthAct,R.S.B.C1996,c.288,s.31(1).22HealthCareConsentAct,SO1996,c2;SeealsoVerdun-Jones,S.&Lawrence,M.“TheCharterRighttoRefusePsychiatricTreatment:AComparativeAnalysisoftheLawsofOntarioandBritishColumbiaConcerningtheRightofMental-HealthPatientstoRefusePsychiatricTreatment”(2013)46UBCLRev489–527.23MaryLouiseMacLaren,D.C.&CouncilofCanadianswithDisabilitiesv.AttorneyGeneralofBC,SupremeCourtofBritishColumbia;Seealso<http://www.clasbc.net/charter_challenge_forced_psychiatric_treatment>

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consenttohealthcare,suchastheCollegeofCollegeofRegisteredNursesofBritishColumbia.Others,suchastheCollegeofPhysiciansandSurgeonsofBC,donot.

InternationalandDomesticHumanRightsandDiscriminationLaw

CanadaisasignatorytotheInternationalConventionontheRightsofPersonswithDisabilities,whichbroadlyspeakingpromotesindividualautonomy,thefreedomtomakeone’sownchoices,fullparticipa-tion,equalityandnon-discrimination,andinparticular,underarticle12,enshrinestherightofpeoplewithdisabilitiestoparticipateindecisionsabouttheirownlives.24Further,BritishColumbianhumanrightslawprohibitsdiscriminationonthebasisofage,disabilityandgender,amongstothergrounds.25Inthecontextofavulnerablepopulationofolderadultslivingwithdementia,theinterplayofdisability,discriminationlawandhealthcarelawisevident.Consequently,applyingahumanrightslenstoare-viewofhealthcareconsentlawasitaffectsolderadultsmayprovideanimportantperspectiveonthisissueandhelpilluminateareaswherepeoplelivingwithdementiaaretreateddifferentlyfrompeoplelivingwithotherformsofdisabilityorotherhealthconditions.

WorkplaceSafetyLawsandStaffingRegulations

Employershaveastatutoryobligationunderoccupationalhealthandsafetylawstoensurethesafetyofallemployees.26Employershaveanobligationtoundertakeaviolenceriskassessment27andarerespon-sibleforeducatingandtrainingworkersinviolencepreventionstrategiesandinformingworkersofwhattheyneedtodoifaresidentbecomesviolent.28Inaddition,theResidentialCareRegulationsetsmini-mumstandardsforstaffingcoverageandtraining—whichmustbeappropriatetomeettheneedsofpersonsincare—aswellasrequiresdesignatedprogrammingforthephysical,socialandrecreationalactivitiesforpersonsincare.29Therelationshipbetweenstaffsafety,staffingcoverageandtrainingishighlyrelevantinthecontextofevidencewhichsuggeststhatbestpracticefortreatmentofbehaviouralsymptomsofdementiais“comprehensive,individualizedassessmentinordertoprovideperson-centredcare,withfamilyandprofessionalcaregivereducationandsupport”.30

ProjectCommitteeMembers

AswithmanyCCELprojects,anadvisorycommitteewillprovideongoingprojectguidanceregardingre-searchandconsultationmethodology,keystakeholdersandrecommendationstoflowfromresearch.Theadvisorycommitteemembersare:

TaraFitzgerald,QualityLeader,SeniorsCare,BCPatientSafety&QualityCouncil

24ConventionontheRightsofPersonswithDisabilities,Arts.3and12.25HumanRightsCode,R.S.B.C1996,c.210.26WorkersCompensationAct,R.S.B.C1996,c.492,s.11527OccupationalHealthandSafetyRegulation,B.C.Reg.296/97,s.4.27tos.4.31.28WorkSafeBC,“Dementia:UnderstandingRisksandPreventingViolence”,online:<https://www.worksafebc.com/en/resources/health-safety/books-guides/dementia-understanding-risks-and-preventing-violence?lang=en>29ResidentialCareRegulation,ss.45&55.30Alzheimer’sAustralia,“TheUseofRestraintsandPsychotropicMedicationsinPeopleWithDementia”,PaperNo38,March2014,online:<https://www.fightdementia.org.au/files/NATIONAL/documents/Alzheimers-Australia-Numbered-Publication-38.pdf>,p.8.

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IsabelGrant,Professor,PeterAllardSchoolofLaw,UniversityofBritishColumbia

LauraJohnston,Lawyer,CommunityLegalAssistanceSociety

MichaelKary,DirectorofPolicyandResearch,BCCareProvidersAssociation

AlisonLeaney,ProvincialCoordinator,VulnerableAdultsCommunityResponse,PublicGuardianandTrustee

MarthaJaneLewis,ExecutiveDirector,BCCentreforElderAdvocacyandSupport

BarbaraLindsay,Director,Advocacy&Education,AlzheimerSocietyofBC

IsobelMackenzie,BCSeniorsAdvocate

JimMann,Personlivingwithdementia

Dr.DeborahO’Connor,Professor,SchoolofSocialWork,andCo-director,CentreforResearchonPer-sonhoodandDementia,UniversityofBritishColumbia

LisaA.Peters,Partner,LawsonLundellLLPandChair,BCLawInstitute

MichaelVonn,PolicyDirector,BCCivilLibertiesAssociation

PennyA.Washington,Partner,DisputeResolution&Litigation,BullHousser

AbouttheCCEL

TheCCELcarriesoutscholarlyresearch,writing,analysisandcommunityengagementrelatingtolegalandpolicyissuesthatimpactolderadults.AspartofitsworktheCCELconsultswithstakeholders,col-laborateswithnumerouscommunityagenciesandpublisheslegal,policyandpracticeresourcesinclud-ingrecommendationsforlawreformandpublicinformationmaterials.TheCCELisadivisionoftheBrit-ishColumbiaLawInstitute,BC’snon-profitindependentlawreformagency.

Contacts

KristaJamesExecutiveDirectorCanadianCentreforElderLawkjames@bcli.orgBarbaraLindsayDirector,Advocacy&EducationAlzheimer’sSocietyofBCblindsay@alzheimerbc.org