canadian centre for elder law - bcli

CANADIANCENTREFORELDERLAW1822EastMall,UniversityofBritishColumbiaVancouver,BritishColumbiaV6T1Z1Voice:(604)8220142Fax:(604)8220144E-mail:[email protected]:www.bcli.org

FirstpublishedonNovember9,2016.RevisedJuly18,2017

HealthCareConsent,AgingandDementia:MappingLawandPracticeinBritishColumbia

BACKGROUNDER

Introduction

TheCanadianCentreforElderLaw(“CCEL”),incollaborationwiththeAlzheimerSocietyofBritishCo-lumbia(“TheSociety”),hasembarkedonaprojectthatexaminesthelaw,policyandpracticeofconsenttohealthcareinthecontextofaginganddementia.This16-monthprojectfundedbytheLawFounda-tionofBritishColumbiawillinvolveextensivecomparativelegalresearchoninformedconsentandin-terrelatedareasofthelaw,aswellasstakeholderconsultation.Theworkwillbeinformedbyanexpertinterdisciplinaryadvisorycommittee(seepage7forthemembers).Researchwillculminateinareportidentifyingareasforlaw,policyandpracticereform,andatleastoneplainlanguageeducationalre-sourceonhealthcareconsentrights.

ObjectivesoftheProject

Thisprojectaimsto:

• Documenttheexperiencesofpeoplelivingwithdementia,familycaregivers,substitutedeci-sion-makers,andhealthcareproviderswithrespecttouseofmedicationandconsentinBC;

• SummarizethelawinBCwithrespecttohealthcareconsent;

• Mapknowledge,policyissues,andlegalconcernsrelatedtotheuseofanti-psychoticsandanti-depressantsforpeoplelivingwithdementia;

• Bridgeawidevarietyofsocialpolicyresearchwithimplicationsforlegalpractice;

• IdentifydifferingandinnovativeapproachestakeninotherjurisdictionsinCanadaaswellastheUnitedKingdom,theUnitedStatesandAustraliavis-à-vislawandpolicyaroundhealthcarecon-sent,particularlywithrespecttoolderadultsandpeoplelivingwithdementia;

• Suggestpotentialareasforlaw,policyandpracticereforminBC,includingeducationandpro-fessionaldevelopment;

• RaisefurtherawarenessontherighttoinformedhealthcareconsentamongBritishColumbians;

• Produceafoundationofresearchthatwillsupportthekeypeopleengagedinthisissuetoap-preciatethetopicfromaperspectivethatrespectstherightsofolderadults,peoplelivingwithdementiaandsubstitutedecision-makers;and

HealthCareConsent,AgingandDementia:MappingLawandPracticeinBC,ProjectBackgrounderRevisedJuly2017

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• Publishatleastonepubliclegaleducationresourcetoassistpeoplelivingwithdementia,substi-tutedecision-makers,andfamilycaregiverstounderstandtheirrightsandresponsibilitieswithrespecttohealthcareconsent.

ProjectMethodology:

TheProjectwillinvolvethefollowingactivities:

• EstablishingadiverseprojectadvisorycommitteethatwillmeetapproximatelysixtoeighttimestoguidetheworkoftheCCELandTheSocietyasneededonthisProject;

• Interviewingarangeofexpertsandhealthcareprovidersonthetopicofmedication,informedconsentandolderadultswithdementia;

• Holdingaseriesoffocusgroupsprovidingpeoplelivingwithdementia,familycaregivers,andsubstitutedecision-makerswithanopportunitytosharetheirexperiencesinrelationtoin-formedconsent,medicationandtreatmentforadultslivingwithdementia;

• UndertakingacomprehensivereviewofrelevantlegislationandjurisprudenceinBC;

• CompletingcomparativeresearchconsideringkeyjurisdictionsinCanadaandabroad,suchasOntario,theUnitedKingdomandAustralia;

• Completingaliteraturereviewonthesubjectincludingsocialscienceacademicmaterialfromjournalsandreportsaswellaspublicationsfromthelegalcommunity;

• Producingareportthatmakesrecommendationsforlawreform,policy,andpractice,includingeducationandtrainingforBC,followingasummaryof:

o Theviewsandconcernsofkeyprofessionalstakeholdersonthesubjectofmedicationandolderadultslivingwithdementia;

o Findingsfromourinterviewswithpeoplelivingwithdementia,substitutedecision-mak-ers,andfamilycaregiversregardingmedicationandtreatmentofolderadultslivingwithdementia;

o Relevantlegislation;and

o Legalmodelsandlegislativeprovisionsfromotherjurisdictionsofnote;

• Reviewingexistingpubliclegaleducationresourcesontherighttoinformedconsenttohealthcare,anddevelopingastraight-forwardplainlanguageresourceforBC.

RationalefortheProject

ProvincialandterritorialdatafromStatisticsCanada2011CensusshowsthatBChasoneofthelargestgrowingpopulationsofseniorsinCanada.AsourpopulationcontinuestoagemanyBritishColumbianswillbelivingwithdementia,orcaringforsomeonewhoislivingwithdementia.Althoughprevalencecan


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bedifficulttoestimate,duetothechallengesofgettingadiagnosis,researchsuggeststhatbetween60,000and70,000BritishColumbianshavebeendiagnosedwithsomeformofdementia.1

Inrecentyears,anumberofstudieshaveraisedconcernsregardingpotentialover-medicationandinap-propriatemedicationofolderadults.In2015,theBCSeniorsAdvocatenotedthatitisestimatedthatupto51%ofresidentsinBCcarefacilitiesaretakingnineormoredifferentmedications.2A2011MinistryofHealthreportrevealedbothsignificantuseofanti-psychoticsandconcernsregardinglackofappropri-ateconsenttotreatmentandengagementoffamilyindevelopingcareplans.3TheSeniorsAdvocateidentifiedextensiveuseofbothanti-psychoticsandanti-depressantsinresidentialcareasanareaofparticularconcern,reportingthat34%ofseniorsinresidentialcareareprescribedanti-psychoticmedi-cations.4TheMinistryofHealthhasstatedthatuseofanti-psychoticsinresidentialcareisprimarilyinresponsetotheincreasingnumberofresidentswithdementia.5Over-medicationandinappropriatemedicationisanissueofparticularconcernwithrespecttoolderadultsbecausetheymaybeatanin-creasedriskofadverseeffectsduetowayolderadult’sbodiesprocessmedications.6Sideeffectsofmedicationsrangefromunpleasanttodebilitating,andsomemedications,suchanti-psychotics,canpo-tentiallyleadtomisdiagnosisofconditions,suchasParkinson’s,resultinginevenmoreincorrectlypre-scribeddrugs.

Variousresourceshavebeendevelopedtosupportenhancedpracticewithrespecttotheadministrationofmedication.Inparticular,BCCareProvidersAssociationpublishedaBestPracticesGuideforReducingAnti-PsychoticDrugUseinResidentialCarein2013,7andtheBCMinistryofHealthpublishedBestPrac-ticeGuidelineforAccommodatingandManagingBehaviouralandPsychologicalSymptomsofDementiainResidentialCarein2012.8However,thereremainsaneedtoadeveloparights-basedunderstandingofhealthcareconsenttocomplementthedominanthealthcareorientation.Limitedresearchaddressesconsentissuesinrelationtomedication,whichcanraiseparticularchallengesinthecontextofadis-easessuchasAlzheimer’sandrelateddementias,whichcancompromisecognitionandcapacity,orbeassociatedwithmythsandassumptionsregardingincapacity.Thereisalsoaneedtodevelopresourcestoassistsubstitutedecision-makers,healthcareproviders,olderadultsandfamilycaregiverstobetter

1MedicalServiceEconomicAnalysis,HealthSystemPlanningDivision,MinistryofHealth,Dementia(age45+yearsonly)January17,2011,project2010_372.CentreforAppliedResearchinMentalHealthandAddictions,SimonFraserUniversity,2006.2OfficeoftheSeniorsAdvocate,“Placement,DrugsandTherapy:WeCanDoBetter”,Report#3,April2015,online:https://www.seniorsadvocatebc.ca/wp-content/uploads/sites/4/2015/09/PlacementReport.pdf(“Place-ment,DrugsandTherapy”).SeniorsAdvocate,“Placement,DrugsandTherapy”.3BritishColumbiaMinistryofHealth,“AReviewoftheUseofAnti-psychoticDrugsinBCResidentialCare”,Decem-ber2011,online:http://www.health.gov.bc.ca/library/publications/year/2011/use-of-antipsychotic-drugs.pdf(“AReviewoftheUseofAnti-psychoticDrugs”)4OfficeoftheSeniorsAdvocate,“Placement,DrugsandTherapy:WeCanDoBetter”,Report#3,April2015,online:https://www.seniorsadvocatebc.ca/wp-content/uploads/sites/4/2015/09/PlacementReport.pdf(“Place-ment,DrugsandTherapy”)5BritishColumbia,MinistryofHealth,BestPracticeGuidelineforAccommodatingandManagingBehaviouralandPsychologicalSymptomsofDementiainResidentialCare:APerson-CenteredInterdiscplinaryApproach(2012),online:http://www.health.gov.bc.ca/library/publications/year/2012/bpsd-guideline.pdf[BCMinistryofHealth].6AReviewoftheUseofAnti-psychoticDrugs,supra,note3at7.7BCCareProvidersAssociation,BestPracticesGuideforReducingAnti-PsychoticDrugUseinResidentialCare:En-suringResidentialCareHomesareSafePlacestoLiveandWork(2013),online:http://www.bccare.ca/wp-con-tent/uploads/Anti-Psychotics-Guide-hr-06-05-13.pdf.8BCMinistryofHealth,supranote5.


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understandthescopeoftherighttoinformedconsent.Understandingofpotentialsideeffectsanddruginteractionsisimportantgiventhenumberofmedicationsseniorsmaybeusingatonce.9

TherighttoconsenttomedicationandtreatmentisafundamentalrightenshrinedinBClaw.Decisionsregardingmedicationhaveasignificantimpactonqualityoflifeandlifeexpectancy,andolderpeopleandsubstitutedecision-makersoftendonotappreciatetherighttoaskquestions,explorealternativesandprovideconsent.Olderpeoplelivingwithdementiaareavulnerable,growingsubsetofBC’spopula-tion;however,ultimatelytheissueofconsenttohealthtreatmentmatterstoeveryone,andthispro-ject’sresearchwillsupportarobustunderstandingoftherighttoinformedconsentinBCthatwillbene-fitanyonereceivingtreatmentorconsentingtotreatmentonbehalfofanother.Inparticular,projectfindingswillbeofbenefittopeoplelivingwithdisabilitiesotherthandementia,aspeopleinothercom-munities,suchasthecommunitylivingsector,sufferfromexclusionfromhealthcaredecision-makingduetoassumptionsaroundmentalcapacityandlackofrespectfortherighttoinformedconsent.

LegalBackground

Thepracticeofhealthcareconsentinthecontextofdementiaraiseslegalissuesrelatedtohealthlaw,substitutedecision-makinglegislation,workplacesafetyandhumanrights.Whilerecentresearchhasshinedaspotlightontheuseofanti-psychoticsinresidentialcare,therighttoconsenttomedicationappliestoallmedicationandtreatment,incommunity,hospitalandlongtermcare—althoughdifferentlawsandregulationsmayapplydependingonthecontextofcare.

HealthCareConsentLaw

InBC,thelawofhealthcareconsentforadultsisgovernedprimarilybytheHealthCare(Consent)andCareFacility(Admission)Act(“HCCA”).10PursuanttothisAct,everyadultispresumedcapableofgiving,refusingandrevokingconsenttohealthcare11andahealthcareprovidercannotprovidehealthcarewithoutfirstobtainingtheadult’sconsent.12Healthcareisdefinedas“anythingthatisdoneforathera-peutic,preventive,palliative,diagnostic,cosmeticorotherpurposerelatedtohealth…”.13Thelegislationsetsouttheelementsandscopeofconsent14andthethreelimitedexceptionstotherequirementtoob-taintheconsentoftheadult:incapacity15,emergency16andpreliminaryexamination.17Importantly,thelegislationalsosetsoutindescendingorderofhierarchywhomayactasatemporarysubstitutedeci-sion-makerincasesofincapacity.TheActissaidtobeacodificationofthecommon-lawdoctrineof“in-formedconsent”.

9Reason,B.,Terner,M.,McKeag,A.M.,Tipper,B.,&Webster,G.(2012).TheimpactofpolypharmacyonthehealthofCanadianseniors.Familypractice,29(4),427-432.10R.S.B.C.1996,c.181(“HCCA”).11HCCA,s.3.SeealsoRepresentationAgreementAct,s.3.12HCCA,s.5.13HCCA,s.1.14HCCA,ss.6-9.15Ifpatientfoundincapable,mayobtainconsentfromSDM:s.11(personalguardianorrepresentative)ands16(TSDM)HCCA.16Urgentoremergencyhealthcare:“inordertopreservetheadult'slife,topreventseriousphysicalormentalharmortoalleviateseverepain”,s.12HCCA.17To“undertaketriageoranotherkindofpreliminaryexamination,treatmentordiagnosis”,s.13HCCA.


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TheResidentialCareRegulationdealswithconsentinthecontextoftheusingmedicationasaformofchemicalrestraintwithinthelongtermcareenvironment.18OnlyafewCanadianprovinceshaveen-actedhealthcareconsentlegislation,theremainderpreferringtorelyonthecommonlawdoctrine.19

AfullexaminationofhealthcareconsentlawsinBCrequiresareview,notonlyofthecommonlawdoc-trineofinformedconsentandstatutoryconsentlaws,butofthebroaderlegalframework.Thisprojectendeavourstocontextualizeconsentlawswithinthisbroaderlegalframeworkbyalsoconsideringthefollowinginterrelatedareasoflaw:

CapacityandSubstituteDecision-Making

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

o RepresentativesundertheRepresentationAgreementsAct

o Temporarysubstitutedecision-makersundertheHCCA

o CommitteesofthepersonunderthePatientsPropertyAct

MentalHealthandInvoluntaryCommittalLaws

InBC,apersoninneedofpsychiatriccarecanbeinvoluntarilycommittedtoadesignatedpsychiatricfacilityandtreatedwithouttheirconsent:pursuanttos.31(1)oftheMentalHealthAct,treatmentofaninvoluntarypatientwhichisauthorizedbythedirectorofthefacilityis"deemedtobegivenwiththeconsentofthepatient".20Thisprovisioneffectivelyenablesadultswithdementiatobeadmittedtoresi-dentialcarefacilitiesandprescribedanti-psychoticmedicationswithouttheconsentoftheadultortheirsubstitutedecision-maker.This“deemedconsent”provisionisatoddswithlegislationinotherprov-inces,suchasOntario,wherebyconsentmustbegivenbytheadult,orbytheadult’ssubstitutedeci-sion-maker.21TheabilitytousechemicalrestraintsunderOntariolawisverylimited.The“deemedcon-sent”andrelatedprovisionsarecurrentlysubjecttoaCharterchallengeintheSupremeCourtofBC.22

HealthCareRegulationandProfessionalResponsibility

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

18ResidentialCareRegulation,ss.73-75.19Ontario,BritishColumbia,NewBrunswick,PrinceEdwardIslandandYukonhavehealthcareconsentstatutes.20MentalHealthAct,R.S.B.C1996,c.288,s.31(1).21HealthCareConsentAct,SO1996,c2;SeealsoVerdun-Jones,S.&Lawrence,M.“TheCharterRighttoRefusePsychiatricTreatment:AComparativeAnalysisoftheLawsofOntarioandBritishColumbiaConcerningtheRightofMental-HealthPatientstoRefusePsychiatricTreatment”(2013)46UBCLRev489–527.22MaryLouiseMacLaren,D.C.&CouncilofCanadianswithDisabilitiesv.AttorneyGeneralofBC,SupremeCourtofBritishColumbia;Seealso<http://www.clasbc.net/charter_challenge_forced_psychiatric_treatment>


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consenttohealthcare,suchastheCollegeofRegisteredNursesofBritishColumbia.Others,suchastheCollegeofPhysiciansandSurgeonsofBC,donot.

InternationalandDomesticHumanRightsandDiscriminationLaw

CanadaisasignatorytotheInternationalConventionontheRightsofPersonswithDisabilities,whichbroadlyspeakingpromotesindividualautonomy,thefreedomtomakeone’sownchoices,fullparticipa-tion,equalityandnon-discrimination,andinparticular,underarticle12,enshrinestherightofpeoplewithdisabilitiestoparticipateindecisionsabouttheirownlives.23Further,BChumanrightslawprohib-itsdiscriminationonthebasisofage,disabilityandgender,amongstothergrounds.24Inthecontextofavulnerablepopulationofolderadultslivingwithdementia,theinterplayofdisability,discriminationlawandhealthcarelawisevident.Consequently,applyingahumanrightslenstoareviewofhealthcareconsentlawasitaffectsolderadultsmayprovideanimportantperspectiveonthisissueandhelpillumi-nateareaswherepeoplelivingwithdementiaaretreateddifferentlyfrompeoplelivingwithotherformsofdisabilityorotherhealthconditions.

WorkplaceSafetyLawsandStaffingRegulations

Employershaveastatutoryobligationunderoccupationalhealthandsafetylawstoensurethesafetyofallemployees.25Employershaveanobligationtoundertakeaviolenceriskassessment26andarerespon-sibleforeducatingandtrainingworkersinviolencepreventionstrategiesandinformingworkersofwhattheyneedtodoifaresidentbecomesviolent.27Inaddition,theResidentialCareRegulationsetsmini-mumstandardsforstaffingcoverageandtraining—whichmustbeappropriatetomeettheneedsofpersonsincare—aswellasrequiresdesignatedprogrammingforthephysical,socialandrecreationalactivitiesforpersonsincare.28Therelationshipbetweenstaffsafety,staffingcoverageandtrainingishighlyrelevantinthecontextofevidencewhichsuggeststhatbestpracticefortreatmentofbehaviouralsymptomsofdementiais“comprehensive,individualizedassessmentinordertoprovideperson-centredcare,withfamilyandprofessionalcaregivereducationandsupport”.29

ProjectCommitteeMembers

AswithmanyCCELprojects,anadvisorycommitteewillprovideongoingprojectguidanceregardingre-searchandconsultationmethodology,keystakeholdersandrecommendationstoflowfromresearch.Theadvisorycommitteemembersare:

23ConventionontheRightsofPersonswithDisabilities,Arts.3and12.24HumanRightsCode,R.S.B.C1996,c.210.25WorkersCompensationAct,R.S.B.C1996,c.492,s.11526OccupationalHealthandSafetyRegulation,B.C.Reg.296/97,s.4.27tos.4.31.27WorkSafeBC,“Dementia:UnderstandingRisksandPreventingViolence”,online:<https://www.worksafebc.com/en/resources/health-safety/books-guides/dementia-understanding-risks-and-preventing-violence?lang=en>28ResidentialCareRegulation,ss.45&55.29Alzheimer’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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Dr.HeatherD’Oyley,GeriatricPsychiatristandPhysicianLead,VancouverCoastalCommunityOlderAdultMentalHealthandSubstanceUse

Dr.ElisabethDrance,Familymember(caregiver)andGeriatricPsychiatrist,VancouverCoastalHealthandProvidenceHealthCare

TaraFitzgerald,QualityLeader,SeniorsCare,BCPatientSafety&QualityCouncil

IsabelGrant,Professor,PeterAllardSchoolofLaw,UniversityofBritishColumbia

LauraJohnston,Lawyer,CommunityLegalAssistanceSociety

MichaelKary,DirectorofPolicyandResearch,BCCareProvidersAssociation

AlisonLeaney,ProvincialCoordinator,VulnerableAdultsCommunityResponse,PublicGuardianandTrustee

MarthaJaneLewis,ExecutiveDirector,SeniorsFirstBC

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,NortonRoseFulbright

AbouttheCCEL

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

ProjectContacts

KristaJames BarbaraLindsayExecutiveDirector Director,Advocacy&EducationCanadianCentreforElderLaw Alzheimer’[email protected] [email protected]

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