advance care planning: a communitarian approach?

NUS Law Working Paper 2019/020 NUS Centre for Asian Legal Studies Working Paper 19/06

ADVANCE CARE PLANNING: A COMMUNITARIAN APPROACH?

Tracey Evans CHAN

[email protected]

[July 2019]

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ForthcomingintheJournalofLawandMedicine(2019)Pleasecitethepublishedmanuscript

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ADVANCECAREPLANNING:ACOMMUNITARIANAPPROACH?

TraceyEvansChan*

Thisarticleexamines theevolutionofadvancecareplanning (ACP) inSingapore through the development of a less formal, communicationsbasedmodel–theLivingMattersprogramme–anditsexperiencewithlocalculturalandcommunityresponsestotheprocessanditsoutcomes.LivingMattersis,inpractice,arguablyacommunitarianapproachtoACP.The article then examines the challenges LivingMatters poses to theoverarchinglegalframeworkforACP,andsuggestsimprovementstotheproxy decision making framework under the Mental Capacity Act,offeringmoreflexiblelegaltoolsforACP,andmoreregulatorysupportforthemeanstoimplementACPoutcomeseffectively.AdvanceCarePlanning,Family/SharedDecisionMaking,BestInterests

I. INTRODUCTIONThechallengesthatmedicaltechnologyhavebroughttocareforpersonsattheendoflife(‘EOL’)arenotnew;infact,theyarecontinuing.Anageingpopulationandanevolvinghealthcaresystemwithdiversifyingprofessionsfurtherintensifytheseproblems.Muchofmedicaltechnologydeployedattheendoflifeisexpensiveandoftendoesnotultimatelyconferbenefitondyingpatients,butinsteadprolongsthedyingprocesswithoutcompensatinggainsinqualityoflife.1Physiciansandtertiaryhealthcareinstitutionsarestillgearedtowardspreservinglifeeventhoughthepalliativecaremovementhasmadesignificantprogress,andpatientsandtheirfamiliesareoftenillpreparedtounderstandandmakedecisionsonthetypesofcareandtreatmentsavailableattheEOL.OnthelegalfrontinSingapore,twoimportantstepsweretakentotryandgetpatients,theirfamiliesandhealthcareprofessionalstobetteranticipateandaddressthesechallenges.In1996,theAdvanceMedicalDirectiveAct2(‘AMDA’)waspassedtoallowadultindividualstorefuseextraordinarylifesustainingmedicaltreatmentwhentheybecometerminallyill.Unfortunately,apartfromthemanyconceptualandoperationalchallengesassociatedwiththeAdvanceMedicalDirective(‘AMD’),thebasicfactremainsthatuptakeofAMDsinSingaporehasbeenverylow,andimplementationofAMDsevenrarerdespitebesteffortsatpromotingthem.3Then,in2008,theMentalCapacityAct4(‘MCA’)waspassedwhich,whileaddressingamuchlargerrangeofcarerelateddecisionsforincapacitatedadults,broughtsomeclarityforproxyorsurrogatedecisionmakinginhealthcare.Theinstrumentofthe

*FacultyofLaw,NationalUniversityofSingapore1RuthHorn&RuudterMeulen,‘TheUseofAdvanceDirectivesintheContextofLimitedResourcesforHealthcare",inPLacketaleds.,AdvanceDirectives(Dordrecht,Springer,2014),c.122Cap4A,RevEd19973SingParlDebates,OfficialReports(17Nov2008),Vol85:5Col695-696:AtthatsittingofParliament,10,100AMDs(0.4%oftheresidentpopulation)wereregistered,19revokedand6putintoeffectsincetheAMDAcameintoforce.Thisnumberhadrisento13,900by2011:SingParlDebates,OfficialReports(14Feb2011)Vol87:16Col26114Cap177A,RevEd2010(‘MCA’)


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lastingpowerofattorney(‘LPA’)wasintroduced,butitsefficacyinhealthcarewaslimiteddrasticallytotheextentthatdoneesofanLPAcouldnotreallymakeasignificantimpactonEOLdecision-making.5Next,astatutory‘bestinterests’testwasintroduced,whichclarifiedthatthedeterminationwasnottobesolelybasedonamedicalwelfareassessment,butmustconsiderthepastwishesandfeelingsoftheincapacitatedpatientinquestion,andtheviewsofhercaregivers,doneesofaLPAorcourtdeputies(ifanyexisted).6Nonetheless,thestatutorybestintereststestisstillrelativelysparseincontentanddoesnotprovidesufficientguidanceorelaborationonhowdisparateobjectiveandsubjectivefactorsaretobetakenintoaccountinmakingaproxydecisionattheEOL.TheupshotwasthatthemedicalprofessionstillwieldedultimateresponsibilityandauthorityindecidingthecourseofEOLmedicalcarebasedontheprotectionconferredbytheMCA’ssection7generaldefenceforactsofcareortreatment.Athird,non-legaleffortemergedin2009withtheAgencyforIntegratedCare(‘AIC’)andNationalHealthcareGroup’sadvancecareplanning(‘ACP’)initiative.PioneeredinvariousformsindifferentstatesintheUSA,theprincipalinnovationinACPisamoveawayfromformal,transactionalmeasuresinplanningforEOLcare,toamorefluidandopencommunicationsmodelofdecisionmaking.7ThesemodelswereadaptedfortheSingaporecontextinthe‘LivingMatters’programmepromulgatedbyAIC,8andpilotedinprojectssuchasHOMEandCARE.9ACPinthesepilotprogrammeswassupportedbytrainedfacilitatorsandstandardisedcareplantemplatestodocumentpreferencesandanticipatorydecisionsatdifferentstagesofapatient’sdiseasetrajectory.Thisinitiativehassincemovedtoanationallevel,withtheNationalACPSteeringCommitteeworkingwithserviceprovidersandgovernmentagenciestosystematicallyimplementACPinallpublichospitalsandothersectorsinthehealthcaresystem.10WhilesystematicempiricalevaluationsoftheimpactthatLivingMattershashadonthequalityandaccuracyofdecision-makinginEOLcarehaveyettoemerge,11severalbasicquestionsrelatingtothelegalinfrastructuresupportingACParise.ThisarticleseekstoconsiderwhetherbetterlegaltoolsorprocessesareneededtoencourageandsupportACP,orifsuchaprogrammeisbestleftalonetodeveloporganicallyinaccordancewithevolvingprofessionalhealthcarepractices.ThenextsectiondescribesinfurtherdetailhowtheexistingLivingMattersACPprogrammeisenvisagedtowork,andhowtheexistinglegalframeworkbearsontheseprocessesandwritteninstruments.ThefollowingthreesectionsthenconsiderspecificissuesthatariseinimplementingLivingMattersACPinSingapore.

5SeePartIII.Cbelow.6SeePartIII.Abelow.7CSabatino,“TheEvolutionofHealthCareAdvancePlanningLawandPolicy”(2010)88(2)MillbankQuarterly211at2188LivingMattersNationalAdvanceCarePlanningProgramme,https://livingmatters.sg/about-living-matters/9AIC’s‘HolisticCareforMedicallyAdvancedPatients’andTanTockSengHospital’s‘CareattheEndofLifeforResidentsinHomesfortheElderly’respectively:LienCentreforPalliativeCare,ReportontheNationalStrategyforPalliativeCare(2011)at22-24,https://www.duke-nus.edu.sg/sites/default/files/Report_on_National_Strategy_for_Palliative_Care%205Jan2012.pdf10IChungetal,“ImplementingaNationalAdvanceCarePlanningProgrammeinSingapore(2013)3BMJSupport&PalliativeCare25611SeeWSKTeoetal,“Economicimpactanalysisofanend-of-lifeprogrammefornursinghomeresidents”(2014)28(5)PalliativeMedicine430,foraninitialstudyontheeconomicimpactofProjectCARE.


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II. THELIVINGMATTERSACPPROGRAMMEINSINGAPOREA. UnpackingtheconceptofACPThe‘LivingMatters’programmeinSingaporewasmodelledonthe‘RespectingChoices’systemdevelopedintheGundersenHealthSysteminLaCrosse,Wisconsin.12RespectingChoicessoughttofacilitatereflectionanddeliberationonpreferencesconcerningEOLbyencouragingpatientstoanticipatetheseissues,discussthemwithatrainednon-physicianfacilitator,familymembersandcarers,andfinallydocumenttheminstandardisedcareplansthatarestoredandeasilyaccessibleacrosstherelevanthealthsystem.13Thisprocessissupportedbystructuredconversations,evidence-basedinformationandtoolkitstosupportpatientreflectiononvaluesandgoalsinendoflifecare.Theemphasisisonarelational,patientcentredprocessthatiswellsupported,andseekstomoveawayfromearlierlegallyfocussed,documentdriventransactionalprocesses.14ACPasenvisagedbyRespectingChoicesandLivingMattersmustalsothereforebeaniterativeprocessbecausepatientgoalsandpreferencescanchangeovertimebasedondifferentorevolvingcircumstancesandexperience.15TheunderlyinggoalofRespectingChoices(asitsnameimplies)isthesameasadvancedirectivepolicy:toenablepatientstoretaincontrolovertheirterminalcareoncetheylosedecision-makingcapacitybymakingadvancetreatmentdecisions.16AlthoughthesamephilosophypromotingrespectforpatientautonomyunderpinsLivingMatters,thereasonsforpromotingACPinSingaporeextendtopre-emptinghastyandunwisemedicaldecisionmakingthatinvitesaggressiveandexpensivehealthcare,andsupportsbettercommunicationwithinthefamilyandwiththehealthcareteam.17MeasurementsofsuccessofACPwerehistoricallybasedonthenumberofadvancedirectivesexecuted,althoughtheseencompassbothwrittenadvancetreatmentdecisionsanddurablepowersofattorney.18However,inamorerecentconsensusstatementofACPpolicy,thestatedobjectiveistohelpensurethatpeoplereceivehealthcarethatisconsistentwiththeirvalues,goalsandpreferencesduringseriousandchronicillness.Thiswouldalsoincludechoosingandpreparinganothertrustedperson(s)tomakehealthcaredecisionsforapersonwhobecomesincapacitated.19Thisshiftinemphasisstemsfromthewelldiscussedshort-comingsofadvancedirectiveorientedpolicies,suchastheproceduraldifficultiesofexecutinganadvancedirective,thepsycho-socialdifficultiesofbeingaskedtomakeananticipatorydecisionwithoutall

12LivingMattersprogramme,n813BJHammes&BLRooney,“DeathandEnd-of-LifePlanninginOneMidwesternCommunity”(1998)158AnnIntMed38314TJPrendergast,“AdvanceCarePlanning:Pitfalls,progress,promise”(2001)29(Supp2)CritCareMedN34atN37-38;InrelationtotheLivingMattersprogramme,seeIChung,“AdvanceCarePlanninginanAsiancountry”,inKThomasetal,AdvanceCarePlanninginEndofLifeCare,2ed(OUP,2018),c.23at326-327.15CLAuriemmaetal,“StabilityofEnd-of-LifePreferences:ASystematicReviewoftheEvidence”(2014)174(17)JAMAInternalMedicine1085at109016SHickmanetal,“HopefortheFuture:AchievingtheOriginalIntentofAdvanceDirectives”(2005)35(6)HastingsCenterReportS26atS30;LLEmanueletal,“Advancecareplanning”(2000)9ArchFamMed1181;MRGillick,“AdvanceCarePlanning”(2004)350NewEngJMed7.17Chung,n1418Hammes&Rooney,n13at38619RSudoreetal,“DefiningAdvanceCarePlanningforAdults:AConsensusDefinitionfromaMultidisciplinaryDelphiPanel”(2017)53(5)JournalofPainandSymptomManagement821at826.


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therelevantfacts,20andthescepticismabouthoweffectivelyadvancedirectiveswouldbeimplementedbyhealthcareprofessionalsattherelevanttime.21Furthermore,empiricalresearchquestionswhetheramajorityofpeoplereallywanttocontrolthespecificsoftheirEOLcare.VariousstudiesrevealthatmostpeoplewouldprefertodelegatecompleteauthorityoverEOLcaretotheirfamilies,anddonotexpecttheirlivingwillstobestrictlyfollowed.22Theyhavenowishtomicro-managetheirEOLmedicaltreatment.Instead,theywouldratherarticulatemoregeneralvaluesandgoalsaboutsuchcare,anddiscusshowmuchdiscretiontheirauthorisedsurrogateshouldhaveindecidingontheirbehalf.23WhiletheoverallemphasisofcurrentACPprogrammessuchasLivingMattershasbeentodownplaythecompletionoflegaldocuments,experiencefromOregonsuggeststhatanadditionalsystemicmeasurewillbeneededtobridgethegapbetweenthegeneraldocumentationofpatientgoalsandpreferencesandtheimplementationofanactualplanofcarethatembodiesthesegoalsandpreferences.24AnimportantthresholdprotocolusedtoachievethisisthePhysicianOrderforLifeSustainingTreatment(‘POLST’)developedinOregon.25ItisasystemthathasgainedconsiderabletractionacrosstheUS,althoughtheterminologyfortheconceptvaries.26AtthecoreofPOLSTisabrightlycoloured,simpleformthatdocumentspatientpreferencesregardingawiderangeoflifesustainingmedicaltreatmentslikecardio-pulmonaryresuscitation,artificialfeedingandhydration,andeventheuseofantibiotics.Thisisderivedfromadiscussionbetweentheattendingphysicianandthepatient,orhisauthorisedproxy.Theordercarriestheauthorityofamedicalorderasitmustbeexecutedbyaphysicianorotherauthorisedhealthcareprofessional,andideallyfollowsthepatientthroughouthisjourneythroughthehealthcaresystem,whetherinphysicalorelectronicform.POLSTsaretobefollowedseeminglywithoutquestionbyemergencyandotherhealthcarestaffinamedicalcrisis,toensurethatthepatientisnotresuscitated,intubatedorotherwisetreatedcontrarytohispriorexpressedwishes.ThePOLSTisnotjustanadvancedirective,butshouldreflectthepatient’scurrentgoalsbasedonhercurrentmedicalcondition.27Variousstudieshave

20SeePHDittoetal,“ImaginingtheEndofLife:OnthePsychologyofAdvanceMedicalDecisionMaking”(2005)29(4)MotivationandEmotion481,forthevariouspsychologicallimitsandbiasesinvolvedinmakingprospectivedecisionsaboutpreferencesinafuturestateofpoorhealth.21AFagerlin&CESchneider,“Enough:TheFailureoftheLivingWill”(2004)34(2)HastingsCenterReport30at36-3722Dittoetal,n20at498andtheliteraturecitedthere.23NAHawkinsetal,“MicromanagingDeath:ProcessPreferences,Values,andGoalsinEnd-of-LifeMedicalDecisionMaking”(2005)45(1)Gerontologist107;RDMcMahanetal,“AdvanceCarePlanningBeyondAdvanceDirectives:PerspectivesfromPatientsandSurrogates”(2013)46(3)JournalofPainandSymptomManagement35524SeeSabatino,n7at228-229;Chung,n14at33225Seee.g.NationalQualityForum,ANationalFrameworkandPreferredPracticesforPalliativeandHospiceCareQuality:AConsensusReport(December2006)at43-44,online:http://www.qualityforum.org/Publications/2006/12/A_National_Framework_and_Preferred_Practices_for_Palliative_and_Hospice_Care_Quality.aspx26SeeTPope&MHexum,“LegalBriefing:POLST:PhysicianOrdersforLifeSustainingTreatment”(2012)23(4)JournalofClinicalEthics353-376;The‘RespectingChoices’programmeinfactstronglyadvocatesthecomplementaryPOLSTparadigminout-of-hospitalsettings:Hickmanetal,supran16atS28.27Sabatino,n7at228-229;NationalPOLSTParadigm,POLSTParadigmFundamentals,http://polst.org/about-the-national-polst-paradigm/what-is-polst/


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demonstratedtheefficacyofthePOLSTsysteminensuringthathealthcareadministeredadherestotheprescriptionsinaPOLSTform.28AccordingtoSabatino:

POLSTrepresentsasea-changeinadvancecareplanningpolicybystandardizingproviders’communicationstoprescribeaplanofcareinahighlyvisible,portableway,ratherthanfocussingsolelyonstandardizingpatientcommunications.29

Thus,althoughthecurrentconceptionofACPisprocessandcommunicationoriented,itstilldoesrequireasupportivelegalframeworktofacilitateandguideimplementationofACPforEOLcare.B. ACPimplementationinSingaporeThepushtowardsembracingandimplementingtheconceptofACPinSingaporewasinpartdrivenbytheinadequaciesofthepriorAMDAframework.WhereastheAMDwascompletedundertheveilofconfidentiality–totheextentthathealthcareworkerscouldnotgenerallyevenaskifapatienthadexecutedone30–thecurrentACPframeworkenvisagesopencommunicationbetweenhealthcareprofessionals,patientsandtheirfamilies.31Inoneexploratorystudyinvolvingfamilycaregiversofpatients,familywascitedasthepointofaccesstothepatientforACP,andakeytosuccessfulimplementation,32whileinanother,lackoffamilysupportwasafactorinpatientreluctancetoengageinACPdiscussion.33TheAMDwasdesignedasalegaltransaction,withappropriatesafeguardstoensureindividualpatientvoluntariness.ThisstringencyevenextendedtocriminalisinganyundueinfluenceonthepersonexecutinganAMD.34Theseconcerns,however,potentiallyruncountertotherelationalneedsofpatientswhooftenrequireemotionalanddecision-makingsupporttoaddressthedifficultquestionsthatseriousillnessandcorrespondingEOLcareraise.Therefore,theNationalMedicalEthicsCommittee’scurrentrecommendationsregardingACPdownplaytheobjectiveofexecutinganAMDorLPA,butinsteadpromotetheoutcomeofastatementofwisheseitherinwrittenororalformthatcoversthepatient’sdesiredcomfortlevel,views,values,goalsandpreferences.Thisstatement,eventhoughnotlegallybinding,wouldbeusefulindeterminingthatpatient’sbestinterestsundertheMCAframeworkwhenshelosescapacitytomakeherowndecisions.35Correspondingly,theAIC’spolicyistosteeraway

28InstituteofMedicine,DyinginAmerica:ImprovingQualityandHonoringIndividualPreferencesNeartheEndofLife(WashingtonDC:NationalAcademiesPress,2015),c.3at176-17829Sabatino,n7at23030AMDA,n2,s.1531NationalMedicalEthicsCommittee,GuideforHealthcareProfessionalsontheEthicalHandlingofCommunicationsinAdvanceCarePlanning(Sep2010)atparas.15,19andAnnexB;LienCentreforPalliativeCare,ReportontheNationalStrategyforPalliativeCare(4Oct2011)atpara12.432RNgetal,“Anexploratorystudyoftheknowledge,attitudesandperceptionsofadvancecareplanninginfamilycaregiversofpatientswithadvancedillnessinSingapore”(2013)3BMJSupportive&PalliativeCare34333KCheongetal,“Advancecareplanninginpeoplewithearlycognitiveimpairment”(2015)5BMJSupportive&PalliativeCare6334AMDA,n2,s.1435NMEC,GuideforCommunicationsinACP,n31atparas14-18,25


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fromlegalinterventionthroughtheprescriptionoflegaldirectives,andtorelyon“commonlawgovernanceofgoodpractice”.36Third,theAMDAimplementedastandaloneregistrythatwasnotintegratedintothecaresystemsandpathwaysintheSingaporehealthcaresystem.UnlessdoctorsorfamilieswereawareoftheAMDregistry,andweremindedtoinitiateasearchforanAMDundertheprescribedcircumstances,37thedirectivewouldnotbereferredtoorinvokedatall.ThisinpartexplainstheverylowimplementationratesforAMDsinSingapore,38evenastherateofcompletionofAMDshasrisenappreciablyinthelastdecade.39Respondingtotheseshortcomings,theLivingMattersprogrammesoughttotakeonboardthefundamentalfeaturesoftheRespectingChoicesprogramme.ThisincludedstandardisedACPinstrumentstailoredfordifferentstagesofhealthcareencounters,andprotocolsforimplementationtoensurethatthesedocumentedviewsandchoiceswereavailabletodirectEOLmedicaldecision-makingusingalocallyadaptedPOLSTform.40ApartfromthetraininganddeploymentofagrowingnumberofaccreditedACPfacilitators,whohaveprotectedtimeandbetterskillstofacilitatediscussionsonACP,thedocumentarytoolsusedintheLivingMattersACPprogrammehavealsobeenmodifiedforthelocalcontext.41ThesebroadlymaptothethreestagesofplanningintheRespectingChoicesprogramme,basedonaperson’sparticularstateofhealth.42TheNationalACPSteeringCommitteeandAIChavealsorolledoutanACPinformationtechnologysystemthatcaptureskeydecisionsoncareoptions,andcataloguesconversationtranscriptsandothersupportingdocumentsintoasinglerecord.SinceApril2017,thissystemhasbeenintegratedwiththeNationalElectronicHealthRecord,thusenhancingaccessibilityandavailabilityacrossdifferentinstitutionalcaresettings.43Notwithstandingtheimportanceofdocumentationandtheusefulnessofhavingthesetemplatesandaccompanyingstructureddiscussionguides,theLivingMattersprogrammeemphasisesalessformal,moreopencommunicationprocessfacilitatedbytrainedpersonsthatresultsinnon-bindingstatementsofwishes.Whilethesemaylook

36Chung,n14at333:ThispresumablyreferstotheBolam-Bolithoprofessionalstandardofcarethatregulateshealthcarepractices,thatwouldallowforflexibilityinrecognizingevolvingclinicalstandardsofcareinACP:seeHiiChiiKokvLondonLucienOoi[2017]2SLR492at[81]-[83]37AMDA,n2,s.938Seen339JTai,“Morepeoplemakinglivingwillsasawarenessarises”,StraitsTimes(5Apr2015):therewasafive-foldincreaseinAMDexecutionsbetween2005and2015,althoughthiswasstillaverysmallpercentageoftheresidentpopulation.40Teoetal,supran11at432,describingthevariousfeaturesofthepilotCAREprogrammewhichprecededLivingMatters.41AbasicACPWorkbookisusedataveryearlystagewhereACPdiscussionsareofferedtothegeneralcommunitytomiddleagedpersonsandolder:seehttps://livingmatters.sg/uploadedFiles/LivingMatters_B5_Booklet_FA_V3_270815.pdf.DiseaseSpecificAdvanceCarePlans,forwhichthereisageneraltemplateandthreeotherstailoredforheart,lungandkidneydiseasepatients,andthesecondtypeofACPdocument.Theseplansrelatetochronicdiseasepatientswheredeathisnotimminentlyanticipatedandthediscussionpointsaretailoredtotheissuessuchpatientsarelikelytofacealongthetypicaldiseasetrajectory–forasample,seeAppendix1.ThefinaltypeoftemplateisaPreferredCarePlan,whichismeanttobeusedforpatientswheredeathwithinayearwouldnotbeasurprise,andveryfrailelderlypatients(forasample,seeAppendix2):NationalUniversityHospitalSingapore,AdvanceCarePlanning,https://www.nuh.com.sg/patients-and-visitors/specialties/advance-care-planning.html42SeeRespectingchoices,online,http://www.gundersenhealth.org/respecting-choices.43SeeChung,n14at327-8;NMECGuideonCommunicationsinACP,n31atpara16


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verymuchlikeanadvancedirective,theyarenotlegallybindingonthesurrogatedecisionmakerorcarerundertheMCA.44Nevertheless,theNMECSub-CommitteerecognisedthatformaladvancedirectivesandlastingpowersofattorneyformedicaldecisionswerealsopotentialproductsoftheACPprocess,wherepatientsformedspecific,firmviewsonfuturetreatmentandcareoptions.45Insummary,theLivingMattersprogrammeseeksostensiblytomovefromtheshadowofthedeficientAMDAregime.Thehopeisthatattheleast,LivingMattersACPwillleadtomoreconversationsandthereforebetterpreparationforpatientsandtheirfamilieswhenacuteorterminalillnessoccurs,andoffermoreeffectivemeanstorecordandcommunicatethesedeliberationstohealthcareprofessionalswhoadviseandformulatecareandtreatmentrecommendations.C. GuidingethicalprinciplesforACPTheethicalprinciplesgoverningtheACPprocessanditsimplementationinSingaporeareequallyimportantfortheyinfluencehowACPisconductedandimplemented.TheNationalMedicalEthicsCommittee(‘NMEC’),inareportthatsoughttoclarifytheethicalbasisonwhichACPdiscussionsshouldoccurbetweenhealthcareprofessionalandpatients,identifiedindividualautonomyastheprimaryprincipleguidingACPinSingapore.ACPseekstoallowtheindividualtoachievesomesenseofcontroloverhisfuturecarebyensuringthathiswishesarerespected.46Individualautonomy,however,encompassesrelationalconcerns,andisnotpurelyatomistic.ACPdiscussionsaremeanttobeopencommunicationsinvolvingnotjustaphysicianoraccreditedfacilitator,butalsofamilymembers,carersandotherlovedones.47LongbeforeACPemergedinitscurrentform,theNMEChadrecommendedinitsearlierreportontheAMDthattheprofessionshouldavoidtakinga“purelylegalisticapproachintheimplementationofanadvancedirective...”andmakeeveryefforttoobtainthefamily’ssupport–recognisingtheneedforarelationalapproachtoimplementingadvancemedicaldirectivesnotwithstandingtheovertlyindividualisticformthattheAMDtakesundertheAMDA.48Inthisway,thepatientissupportedthroughtheprovisionofinformationonrelevantmedicalissues,theinvolvementoffamilymembersandhealthcareprofessionals,andofferingsomemeans–thestatementofwishes,anAMDorLPA–toimplementherpreferencesinordertoconferameasureofcontroloverherEOLcare.49Notwithstandingtheseformalpositions,itisarguedthatthereisanascentethicaltensionintheunderstandingofACP.OneinformedcommentatorassertsthatSingaporeancultureislargelyConfucianatheart,despiteitsmultiracialpopulation,andthegeneralpopulationholdssimilarviewsandbeliefsabouttheroleofthefamilyinEOLcare.Theunderstandingofautonomyis“verydifferentfromthatofWesterncivilisationatlarge”,and“theneedforunderstandingandconsensusbuildingwithinthe

44SeePartIII.Abelow45NMECGuideonCommunicationsinACP,n31atpara1746NMEC,supran31atpara2147NMEC,ibidatpara22.B48NationalMedicalEthicsCommittee,Advancemedicaldirectives:areportbytheNationalMedicalEthicsCommittee.Singapore(NMEC,1995)at21para449NMEC,supran31atparas15-20


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familyisparamount.”50Thusculturalfactorsandtheensuingnon-involvementofthepatientaccountedforthenon-completionofmorethat50%ofACPcasesinitiatedinonelocalstudy.51ThishighlightsaverydifferentcommunityappreciationandapproachtotheimportanceplacedontheprocessandoutcomesofACP,withdecision-makingauthorityreposedinthefamilyasasub-unitofthecommunityratherthantheindividual.Athickconceptionoffamilyautonomywouldarguethatitisentirelypermissibletooverridethepatient’spreviouslyexpressedwishesconcerningcare,andthereisnopriorityplacedonappointinganappropriatesurrogatedecisionmakerinadvance.52Thefamilyunitwouldcollectivelyresolvethisbasedontheevolvingpatientcircumstancesandrelevantcompetenciesofablefamilymemberstoactasaspokesperson.53Thisarguablymore‘authoritarian’communitarianconceptionofACPwouldalsogenerallyeschewanystrictcompliancewiththetermsofaformaladvancedirective,viewingitasthepatient’srelevantpriorinputinthefamilycomingtoacurrentconsideredjudgmentofwhatisbestforthepatient.Indeed,theethicalargumentinsuchquartersisthatformaladvancedirectivesareirrelevant.54ThisfamilialconceptionofACPalsoimplicitlyacknowledgestheculturalandlegalrealitiesoftheprovisionofintermediateandlongtermcareandhealthcarefinancinginSingapore.VariousstudieshavedocumentedthepriorityoffamilycentreddecisionmakingprocessesinSingaporehealthcare.55Theoverarchingstatesocialwelfaresystemalsohasadistinctlyfamilialideology.56Inrelationtohealthcarefinancing,individualcontributionstothecompulsoryhealthsavingsaccount,Medisave,maybe,andareveryoften,usedtofundhealthcareforclosefamilymembers.57Correspondingly,thestateendowment-basedMedifundsupport58forindigenthealthcareisdisbursedonthebasisofhouseholdneed;ifanindividual’sfamilyismeanstestedtobeabletoaffordtreatment,thepatientisnoteligibleforMedifund.59Ultimately,childrenofelderlypatientsinSingaporehavealegalresponsibilitytoprovidemaintenancefortheirparents,includingmedicalcosts.60

50Chung,n14at33251KMoketal,“FamilialInfluenceonHealthcareDecisionMakinginanAsianSociety”(2015)5(S2)BMJSupportive&PalliativeCareA65.Thereissomeevidence,however,thatthesituationisevolvinginresponsetomorestaggereddisclosuresofdiagnosistothepatientandthereforegreaterreceptivitytoACP:KTayetal,“CulturalInfluencesuponadvancecareplanninginafamilycentricsociety”(2017)15PalliativeandSupportiveCare665at67252RPFan,“Self-determinationvs.Family-determination:TwoIncommensurablePrinciplesofAutonomy”(1997)11Bioethics309at31853RPFan,“TheConfucianbioethicsofsurrogatedecisionmaking:Itscommunitarianroots”(2011)32TheoreticalMedicine&Bioethics301at305-30654Ibid;seealsoHMChan,n71below.55Seee.g.JTan&JChin,WhatDoctorsSayAboutCareoftheDying(Singapore:LienFoundation,2011)at12,http://www.lienfoundation.org/sites/default/files/What_Doctors_Say_About_Care_of_the_Dying_0.pdf;JTanetal,“CulturalandEthicalIssuesintheTreatmentofEatingDisordersinSingapore”(2013)5(1)AsianBioethicsReview40at43-4556SeegenerallyYYTeo,“SupportforDeservingFamilies:InventingtheAnti-welfareFamilialistStateinSingapore”(2013)20(3)SocialPolitics387-40657CPF(MedisaveAccountWithdrawals)Regulations,RG17,2007RevEdSing;Tan&Chin,n55at21-2358EstablishedundertheMedicalandElderlyCareEndowmentSchemesAct(Cap.173A,2001Rev.Ed.Sing.),PartII59JLim,“SustainableHealthCareFinancing:TheSingaporeExperience”(2017)8(S2)GlobalPolicy103at105;Tan&Chin,n55at24-2560MaintenanceofParentsAct,Cap167BRevEd1996,s.5(2)


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Consequently,LivingMatters’programmaticmoveawayfromcompletingformalinstrumentstowardsmoreopen-ended,iterativecommunicationsbetweenhealthcareprofessionals,patientsandfamiliesmaygiverisetogreatermedicaldecision-makinguncertaintyinthefaceofpotentiallyconflictingvaluesatplay–inparticular,whetherindividualorfamilyautonomyholdsswayinresolvingdifferencesofopiniononthebestinterestsoftheincapacitatedpatient.AmuchbetterethicalapproachthatcandidlyacknowledgestheinherenttensionsbetweentheautonomybasedandfamilialbasedperspectivesofACPisaresponsivecommunitarianism.Itoffersaframeworkthatpromotesthepolicyofiterativecommunicationandnon-legalresolutionofdecisionmakingconflicts.AccordingtoEtzioni,responsivecommunitarianism:

…seekstobalanceautonomywithconcernforthecommongood,withoutaprioriprivilegingeitherofthesetwocorevalues.Anditseekstorelyonsociety(informalsocialcontrols,persuasionandeducation)tothegreatestextentpossibleandminimisetheroleofthestate(lawenforcement)inpromotingcompliancewiththenormsthatflowfromthesevalues.61

Inahealthcaresystemthatlegallyandprofessionallyvaluesrespectforindividualpatientautonomy,yetconcurrentlyplacesprimaryresponsibilityfortheprovisionofcareandhealthcarefinancingonthefamilyunit,ACPcanbeseenasaninterventionthatseekstostrikeafairbalancebetweenthesecompetingethicalapproaches.AsJoxobserves:

Thedialogue–or,rather,trialogue–betweenthepatient,hislovedones,andprofessionalsformsthecorecommunitythatdrivesthesuccessofACP.Ifthistrialogueworkswell,medical-treatmentdecisionscanreliably,responsibly,andconsensuallybemadewithinthissubsidiarycorecommunitywithouttheneedforcourtproceedingsorotherinvolvementofhigherstateinstitutions.…Infosteringanawarenessoflife’sfinitude,areflectivedeliberationoflifeplans,andacriticalstancetowardsmedicinewithincommunitiesandthesocietyasawhole,ACPservesrelevantinterestsofdemocraticsocieties.62

WhatproceedsbelowevaluatestheLivingMattersprogrammeanditssupportinglegalandethicalframeworkthroughthelensofresponsivecommunitarianism,emphasisingthetrialoguenecessarytopromotebothindividualandfamilyorpublicgoods.Threespecificissuesthatariseareconsideredinturn:first,isthelegalbestinterestsdecisionmakingframeworktrulysupportiveofvaluesofACP,ifafamily-basedmodelofmedicaldecisionmakingistheusualnorm?Secondly,doesthelegalframeworkadequatelysupportpatientswithstrongindividualpreferencesorwholackadequatefamilialsupportinEOLcare?Finally,assumingthatACPsuccessfullypreparespatientsandtheirfamiliesforfuturemedicaldecisionmakingchallenges,arethereappropriatelegalorregulatorymechanismstoensurethatresultingcareplansareproperlyimplementedacrossinstitutionalboundariesintheSingaporehealthcaresystem?III. DIFFICULTIESWITHTHEACPLEGALFRAMEWORK

61AEtzioni,“Authoritarianversesresponsivecommunitarianbioethics”(2011)37JournalofMedicalEthics17-23at17[emphasisadded]62RJJox,“Preparingexistentialdecisionsinlaterlife:Advancehealthcareplanning”,inMSchwedaetal,PlanningLaterLife:BioethicsandPublicHealthinAgeingSocieties(Routledge,2017),c.11at174.


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A. Ambiguityintheend-of-lifedecision-makingmodelWhereACPhasoccurredtosomemeaningfulextent,itslessformal,non-bindingoutputsdoplugintothe‘bestinterests’surrogatedecision-makingframeworkundertheMCA.Atthisstage,thetrialoguebecomesadialogueoncethepatientlosesdecisionmakingcapacity.Section6oftheMCAtherequiresthataproxydecisionmakerrelyingonareasonablebeliefdefenceundersection7(‘generaldefence’)takeintoconsiderationthepatient’s“pastandpresentwishesandfeelings(andinparticular,anyrelevantwrittenstatementmadebyhimwhenhehadcapacity).”63Inaddition,theLivingMattersACPstandardtemplatecareplansallrecordtheappointmentofprimaryandsecondaryhealthcarespokespersonsforthepatient.64Thereissomelegalrecognitionofsuchan‘appointment’insection6(8)oftheMCA,whichstatesthatapersondeterminingthebestinterestsofanothermusttakeintoaccounttheviewsof“anyonenamedbythepersonassomeonetobeconsultedonthematterinquestionormattersofthatkind…astowhatwouldbeinthatperson’sbestinterests,ortheirrelevantwishes,feelings,beliefsandvalues.”Therequirementis,however,onlytoconsult.Suchspokespersonsdonothaveanydecision-makingauthorityorcorrespondingprotectionfortheirdecisionsundertheMCA.TheMCAthusrecognisesthetypicaloutcomesoftheACPprocesswithouttheneedforexplicitrecognitionoftheLivingMatterscareplansorthenotionofanappointedhealthcarespokesperson.TotheextentthattheprogrammeenhancestheaccessibilityofsuchcareplansthroughtheACPITsystem,65itprovidesafoundationforthegoalsofLivingMattersbyimprovingthequalityofpatientpreferenceinformationavailabletohealthcareprovidersandproxydecisionmakersinEOLcare.However,thepersistingcriticismofthebestinterestsstandardundertheUKMCA2005andtheSingaporeMCA2008isthatitdoesnotactuallyelaborateonhowtheproxydecisionmaker(s)istouseorweighthedifferentfactorsincomingtoadecisionthatreflectsthepatient’sbestinterests.Inparticular,itisnotclearwhatweightorinfluencethecontentsofcareplanspossessinrelationtotheviewsoffamilymembers.TheevidencefromtheUKonimplementationoftheUKMCA2005demonstratesthatthereiscommonmisunderstandingaboutwhatthestatutorytestrequires,withmanyclinicalteamsandhealthcareinstitutionsmistakenlyassumingitrepresentsaclinicalstandard,ormedicalnotion,ofbestinterests,andinputfromthepatientorherfamilymembersisoftenabsentoruntrusted.66InSingapore,differentconcernshavebeenraised.Whilehealthcareprofessionalsoftenconsultfamilymembers,theytooreadilygiveintofamilywisheseveniftheseruncontrarytothepatient’spreviouslyexpressedwishes(whetherthroughACPornot).6763MCA,n4,s.6(7)(a)[emphasisadded]64SeeAppendix1and2atp28and30respectively65SeeChung,supran14at327-32866HouseofLordsSelectCommitteeReportontheMentalCapacityAct2005,MentalCapacityAct2005:Post-LegislativeScrutiny.ReportofSession2013-2014,HLpaper139(London:TheStationaryOffice,2014)atparas90-94;HJTaylor,“Whatare‘BestInterests’?ACriticalEvaluationof‘BestInterests’Decision-MakinginClinicalPractice”(2016)24(2)MedLR176at193-195.67LKrishnaetal,“AdvancingaWelfare-BasedModelinMedicalDecision”(2015)7(3)AsianBioethicsReview306at312;Correspondingly,arecentstudyrevealsthatthereisamisunderstandingamongstsomefamilycaregiversandpatientsthatfamilymembershavetherighttomakedecisionsforpatientseventhoughthisisstrictlynotthelegal


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Inonestudyofoncologydoctorsandnurses,whileamajorityofrespondents(55.4%)thoughtthatthepatient’sviewsshouldprevailinrelationtothemakingofaDo-Not-Resuscitate(‘DNR’)order,another23.3%thoughtthatitdependedonthesituation,and18.5%feltthatthefamilyoughttobegivenprecedence.68Otherempiricalstudiesrevealthatinpractice,patientsareseldomactuallyconsultedonmatterssuchasaDNR,69whileinanotherstudy,59.9%ofdoctorswerepreparedtooverridethepreviouslyexpressedwishesofthepatientinfavourofthefamily’s.70Althoughprofessionalmotivationsunderlyingsuchastanceareunclear,thedependenceonfamilyinsocialorculturaltraditionsfordecisionmaking,careprovisionandhealthfinance,healthprofessionals’discomfortwithengagingfamilymembersinEOLdiscussions,avoidanceofconfrontationandfearoflitigationarepossibleexplanations.Whatisclearistherealpotentialforthepatienttoloseanyinfluenceoverthecourseoffuturecareonceshelosescapacity.AmorebenigninterpretationofthisstateofaffairsisthattheLivingMattersprogrammewouldoperatewithinafamilymodelofdecisionmaking,wherethe‘voice’ofthepreviouslycompetentpatientisbetterheardwhenarticulatedbyappointedfamilyrepresentatives.Thisfacilitatestheongoingfamily,ratherthanindividual,dialoguewithhealthcareprofessionalsonthepatient’sEOLcare.InthewordsofHMChan,thisrendersthepatient’spreferencesandvaluesencapsulatedinACPmerelyafactortobeweighedinreachingwhatisultimatelyacommunal,familydecisiononEOLcare:

The[advance]directiveisameansofhelpingthemtoknowmyvoiceandoffacilitatingtheongoingdialoguewiththemwhenIlapseintoincompetency.MyfamilymemberswouldthentrytotalktomeasifIwerecompetent,butthewholepointofthedialogueisnotsomuchtofigureoutwhatIwouldhavewantedformyself(mycounterfactualchoice)buttoarriveatafamilydecisionwithmycounterfactualparticipation.Thepriordirectiveonlyencodesmyinitialvoice,andmyvoice,alongwiththosebelongingtomysignificantothers,islikelytobetransformedasthedialoguegoesalong.So,thefinaldecisionneednotbedictatedentirelybytheliteralmeaningofmyadvancedirective,howeverclearandspecificitis,thoughitisneverthelessanimportantreferenceformyfamilyinthedecisionmakingprocess....Sointhefamilialmodelofdecisionmaking,itisnotnecessarytoinstitutionalisethe‘individualistic’expressionofpriorwishesstrictlybylawsandregulations71

position:SMenonetal,“Advancecareplanninginamulti-culturalfamilycentriccommunity:Aqualitativestudyofhealthcareprofessionals,patients’andcaregivers’perspectives”(2018)56(2)JPainSymptomManagement213.68GMYangetal,“ShouldPatientsandFamilybeInvolvedin“DoNotResuscitateDecisions?”ViewsofOncologyandPalliativeCareDoctorsandNurses”(2012)18(1)IndianJournalofPalliativeCare52at54-55.Asubsequentstudyofthesamegroupofphysician’spatientsindicatedthatlessthan10%ofthosepatientswereconsultedontheirDNRorders:JAChingetal,“PatientandFamilyInvolvementinDecisionMakingforManagementofCancerPatientsataCentreinSingapore”(2015)5BMJSupportPalliatCare420.69JPhuaetal,“End-of-LifeCareintheGeneralWardsofaSingaporeanHospital:AnAsianPerspective”(2011)14(2)JournalofPalliativeMedicine129670WTFooetal,“FactorsConsideredinEnd-of-LifeCareDecision-MakingbyHealthcareProfessionals”(2013)30AmJHospPalliatCare354-35871HMChan,“SharingDeathandDying:AdvanceDirectives,AutonomyandtheFamily”(2004)18(2)Bioethics87at96-97[emphasisadded].AsimilarpracticeisobservedinTaiwan,notwithstandinglegislationthatprioritisespatientautonomyandnominatesspecificlegalproxies:SCLee,“FamilyConsentinMedicalDecision-MakinginTaiwan:TheImplicationsoftheNewRevisionsoftheHospicePalliativeCareAct”,inRFaned,Family-OrientedInformedConsent(SpringerInternationalPublishing,2015)c.8at127-129.


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Incontrast,thereisscepticisminprofessionalquarterswhetherfamiliesshouldbegivendefactodecision-makingauthoritytobeginwith.Thesecommentatorsquestionthevalueoffamilyinputswheretheunderlyingrelationshipsarebare,priorityofinterestsmaybeskewedinfavourofotherextraneousinterests,andthepotentialforcoercionorabuseisreal.Acommonobservationintheliteratureisthelocalfamilialconcernwiththedischargeoffilialobligationsinordertopreservehonouranddignityasjudgedbytheextendedfamilyandcommunity,whichoftenresultinapreferenceforfutileorburdensometreatmentstoavertsuggestionsofabandonmentorneglect.72Inaddition,family-centricdecisionmakingignoresdistinctindividualaspectsofpersonhoodthatcannotbefullycapturedbynotionsofrelationalorfamilyinterestsinafamilybaseddecisionmakingprocess,andareliabletobeignoredorneglectediffamilybasedauthorityalwaysholdssway.73Theseprofessionalconcernshavepromptedacallforanobjective,welfare-basedinterdisciplinaryclinicalassessmentofapatient’sbestinterests.Originatinginthepalliativecaresetting,theinterdisciplinarymembershipoftheclinicalteamallowsformoreholisticassessmentofthepatient’sinterestsbeyondtheclinical,withtheaimofsetting“clearlimitstocaredeterminationstoensurethatbasiccareandbestinterestsofthepatientarenotcompromised.”74Underthis‘welfare’modelofdecisionmaking,themultidisciplinaryteamdrawnfromdifferenthealthcaredisciplinesisguidedbyprevailing“professional,clinicalandlegalguidelines”inorderto“ensureaholisticandbalancedpictureofthepatientandtheir(sic)needs”.75Itwouldseemthatlocaladvocatesofthis‘welfare’modelarepreparedtooverridethepreviouslyexpressedwishesofthepatient,76andevenherapparentlyautonomouspreferencesifthe‘holistic’evaluationofapatient’sbestinterestswarrantit.77However,whatcomesoutmostclearlyunderthismodelistheleadrolethattheattendinghealthcareteamtakesinmakingdecisions.Itistheywhoundertaketheinquiry,withinputsfromthepatient(wherecompetent)orherACPdocumentation,herfamilyandothercloserelations,beforecomingtoadecisiononwhatrepresentsheroverallbestinterests.ThisstanceonwhowieldsdecisionmakingauthorityisalsoechoedbytheSingaporeMedicalCouncilinitsHandbookofMedicalEthics.78IthaspreviouslybeenarguedthatthestatutorybestintereststestundertheMCA2008involvesabalancingapproachthatseekstomaximallypromotethewelfareofthe

72Tan&Chin,n55at22-23;Krishnaetal,n67at313-314;KTayetal,“StudyingCostasafactorintheChoicebetweenQualityandQuantityofLifeamongstPatientswithCancerandtheirCaregiversataCancerCentreinSingapore”(2016)6(4)JournalofPalliativeCare&Medicine1000276at573JBlustein,“Thefamilyinmedicaldecisionmaking”(1993)23(3)HastingsCenterReport6at10-11;LKrishnaetal,n6767at311;SWSim&LKrishna,“RespectingtheWishesofIncapacitatedPatientsattheEndofLife”(2016)31(1)Ethics&Medicine15at2174LKrishna,DWatkinson&LBNg,“Limitstorelationalautonomy–TheSingaporeanexperience”(2015)22(3)NursingEthics331at33775BChan,JChin&LKrishna,“Thewelfaremodel:aparadigmshiftinmedicaldecision-making”(2015)1(9)ClinicalCaseReportsandReviews185at18676Krishnaetal,n74;JASy,MTan&LKrishna,“Areviewofdecision-makingmodelsinend-of-lifecareinSingapore”(2015)1(8)ClinicalCaseReportsandReviews169at17177BChanetal,n75at18778SMC,HandbookofMedicalEthics(2016Edition)at30:“Youshouldsupportpatientsby:Makingdecisionsbasedonaconsiderationofoverallbenefits,risksandburdensforthepatientswhichmaynotbelimitedtopurelyclinicalconsiderations,andavoidingbiasesbasedonyourownbeliefsandsenseofvalues”;http://www.healthprofessionals.gov.sg/docs/librariesprovider2/guidelines/2016-smc-handbook-on-medical-ethics---(13sep16).pdf


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incapacitatedperson.79Thetwististhatitincorporatesconsiderationsassociatedwiththesubstitutedjudgmentstandard80asrelevantindeterminingbestinterests–herpastwishes,valuesandbeliefsthatwouldbelikelytoinfluenceherdecisionifshehadcapacity,andanyotherfactorsshewouldlikelyconsiderifshewereableto.81Thevalueofauthenticity,ratherthanautonomy,bettercapturestheseconsiderations.Itdirectsthesurrogatedecisionmakertorespectthepatientbydecidingrationallyinaccordancewithhervaluesandbeliefs,ratherthanapretencebasedupontheideaofacounterfactualchoicebythepatient.82Intheabsenceofclearindicationsastowhatthesepreferences,valuesandbeliefsare,theapproachdevolvesintoanobjectivewelfareappraisal.ThisapproachresonateswithrecentobservationsmadebytheUKSupremeCourtinAintreeUniversityHospitalsNHSFoundationTrustv.James.83BaronessHalemakesclearthatundertheUKMCA2005,84thebestinterestsinvolves“lookingatwelfareinthewidestsense,notjustthemedicalbutthesocialandpsychological”.85Indoingso,theseinterestsaretobedeterminedfromtheperspectiveoftheparticularpatient,andnotobjectivelyasareasonablepersonwoulddecide:

Thepurposeofthebestintereststestistoconsidermattersfromthepatient’spointofview.Thatisnottosaythathiswishesmustprevail,anymorethanthoseofafullycapablepatientmustprevail.Wecannotalwayshavewhatwewant.Norwillitalwaysbepossibletoascertainwhatanincapablepatient’swishesare.Evenifitispossibletodeterminewhathisviewswereinthepast,theymightwellhavechangedinthelightofthestressesandstrainsofhiscurrentpredicament.…insofarasitispossibletoascertainthepatient’swishesandfeelings,hisbeliefsandvaluesorthethingswhichwereimportanttohim,itisthosewhichshouldbetakenintoaccountbecausetheyareacomponentinmakingthechoicewhichisrightforhimasanindividualhumanbeing.86

BaronessHale’sobservationsarealsoconsistentwiththecontingencyofanassessmentofwhatisauthentictoaperson’spreferences,valuesandpersonalsystemofbeliefs.87Circumstancesmaydemonstratethatthepatient’spriorpreferences,suchasadesiretodieathome,cannotbereasonablyrealizedwiththeresourcesavailable.Wearedealingwithahybridstandardofproxydecisionmakingthatdoesnotgivepresumptivenormativeweighttoeitherindividualautonomynorbeneficenceobjectivelyconceived.88Itisaninquirymeanttopromotedecisionsthatareasrespectfulandconsistentwiththepatient’spersonhoodandvaluesasfarasthecircumstancesandresourcespermit.Anillustrationofhowthisplaysoutisseeninthe

79TEChan,“TheelderlypatientandtheHealthcareDecisionMakingFrameworkinSingapore”,inWCChaned,Singapore’sAgeingPopulation:ManagingHealthCareandEndofLifeDecisions(Routledge,2011),c.8at123-12580SeeABuchannanandDBrock,“DecidingforOthers”(1986)64(2)MillbankQuarterly17at5681MCA,n4,s.6(7)82SeeDBrudney,“ChoosingforAnother:BeyondAutonomyandBestInterests”(2009)39(2)HastingsCenterReport3183[2013]UKSC67;[2014]1AC59184ThisisinparimateriawiththedefinitionofbestinterestsundertheSingaporeMCA,n485Aintree,n83atpara3986Aintree,n83atpara45[emphasisadded]87Brudney,n82at35-3688Chan,n79at124


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post-AintreeCourtofProtectiondecisioninReBriggs(IncapacitatedPerson)(MedicalTreatment:BestInterestsDecision)(No2).89There,thecourthadtoweighthestrongpresumptioninadministeringtreatmenttopreservelife,againstthegreatweighttobeplacedonwhetherthepatientwouldhaveconsideredthatlifeasbeingworthwhileinaccordancewithhisvaluesandbeliefs.90Itisalsosignificantthatthejudgeeventuallydecidedonthelatterbasedontheconsistentevidenceofhisfamilythathewouldnothaveagreedtosuchtreatmentinaccordancewithhisindividualbeliefsandvalues.91ACPinSingaporeshouldthereforeseektoenrichthemedicaldecision-makingprocessbyenhancingtheavailabilityofevidenceconcerningthepatient’svaluesandpreferences–particularlyontheprocessbywhichfuturedecisionsshouldbemade.Thiswillbetterenablehealthcareprofessionaltospecifythegoalsofcareforthepatient,andmaketreatmentplansandrecommendationsaccordingly.Indeed,somecommentatorsarguethatenhancing‘authenticity’,ratherthan‘accuracy’withrespecttoautonomy,shouldbethepropergoalofACP.92B. ShareddecisionmakingattheEOLWhatremainstobeworkedoutistheprocessofdecisionmakingandhowtherelevantpartiesshouldunderstandtheirrolesandauthorityundertheauspicesofthestatutorybestinterestsstandard.Itmightseemthatthe‘welfare’approachoutlinedabovebetterfitswiththelegislativeandjudicialpositions.However,itissubmittedthatthis‘welfare’approachfailstogiveappropriateweighttotheviewsandcontributionsofdesignatedfamilymemberswhoareappointedtobethespokespersonsforthepatientunderACP.Empiricalworkhasrevealedthatmostpatientsarenotmindedtomicro-managetheirfuturecarethroughdecisionstorequestorrefusespecifictreatmentsandmandatethattheseadvancedecisionsbefollowed.Theyinsteadprefertomakegeneralpersonalstatementsconcerningtheirvaluesandgoalsofcare,andtodiscusshowtheirsurrogatesshouldgoaboutthetaskofdecidingontheirbehalf.93However,thereissomevariabilityinpatientpreferencesontheamountofdiscretionorflexibilitythesurrogateshouldhaveininterpretingthepatient’sbestinterests,anditisimportanttothemtoexplainthereasonsfordoingso.94Theinsightsonthepsychologicalchallengesofmakingadvancetreatmentdecisionsindifferentstatesofexistencementionedabovereinforcethesefindings.95Therefore,insituationswhereACPissuccessfullyengagedandappropriatediscussionsandplanningoccurs,theeffectwouldalsobetopreparedesignatedfamilyandother

89[2016]EWCOP53;[2017]4WLR3790Briggs,ibidatpara12891Briggs,n89atparas96-11292YSchenkeretal,“WhatShouldBetheGoalofAdvanceCarePlanning?”(2014)174(7)JAMAIntMed1093at109493Hawkinsetal,n23at113-114;InaHongKongstudy,onlyasmallminorityofpatients,familymembersandphysiciansthoughtthatapatient’spriorwishesexpressedinanadvancedirectiveshouldbefollowedstrictly.Rather,patientwishesinadvancedirectivesshouldbetakenseriously:HMChanetal,“End-of-LifeDecisionMakinginHongKong:TheAppealoftheSharedDecisionMakingModel”inRPFaned,Family-OrientedInformedConsent(Cham,Springer,2015),c.10at159-16194McMahanetal,n23at36395Seen20andaccompanyingtext


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closeintimatesforinthemomentdecisionmakingafterthepatientlosescapacity.96Thisincreasesthevalueoftheirinsightstothebestinterestsdetermination,ascomparedtofamilymembersthathavenotbeeninvolved.Furthermore,meaningfulACPdiscussionswouldincreaselevelsoftrustbetweenpatient,chosensurrogatesandhealthcareprofessionals.Thisoffersanotherreasonwhythejudgmentofsuchpatientsurrogatesonapatient’sbestinterestsshouldbeaccordedgreatermoralweight–becausetheyhavebeenadvisedlychosenbythepatienttospeakontheirbehalf.Nevertheless,potentialconflictwithotherfamilymembersisnotautomaticallyavoidedasthedesignatedsurrogatedecisionmakerswillstillhavetomakedecisionsinthefamilycontext,wheretheremaybeadiversityofviewsaboutwhatrepresentsthepatientsinterests.97ThedifficultyundertheMCAframeworkisthatiteffectivelyplacestheonusonhealthcareprofessionalswhoperformactsofcareandtreatmenttotakeresponsibilityforthesedecisions.98TheSMCEthicalCodeandEthicalGuidelinesdonotsufficientlyrecognisetherolethatfamilymemberswhoareappointedACPsurrogatesplay,andrelegatethemtothestatusofinformationproviders.99Patient-centredethicalnarrativesaccompanyingtheACPprocessarecomplicatedbythepotentialtensionsbetweentheinterestsofthepatientandthoseofhisfamilymembers.WhiletheMCAmayemphasisethatdecisionmakingbepatientfocussed,thelawalsorecognisestherightsoffamilymembersbasedontheirfinancialandothercontributionstothecareofthepatient.TheethicsofACPalsoclearlyrecognisetheneedtoinvolvefamilyandcloseintimatesintheformulationofcareplans,butdonotaddresshowconflictinginterestsandinterpretationsofthepatient’svaluesandpreferencesaretoberesolved,especiallyintheirimplementation.100Finally,closefamilymemberscommonlydoexpecttohavemoralauthoritytomakedecisionsfortheirlovedones,andmaynotacceptthatlegalauthorityultimatelyrestswiththehealthcareprofessional.101ThisisanothersourceofinterpersonaltensionthatmayariseintheimplementationofACP.Abetterapproachthatgivesmoreeven-handedweighttothecontributionsthatfamilyandhealthcareprofessionalsmakeinEOLdecisionmakingisshareddecisionmaking.102Thisrecognisesthatfamiliescanprovideuniqueinsightsintoapatient’svaluesandbeliefs,andhowthesemightberealisedintheoverallcareprovided.Healthcareprofessionalsofcoursecometothetablewiththewealthofmedicalknowledgeandexperienceindealingwiththecomplexitiesofsuchcarethatthefamilywouldusuallylack.Inthisrespect,theHongKongHospitalAuthority’sGuidelinesonLife-sustainingTreatmentintheTerminallyIll(‘HKHAGuidelines’)provideagoodstartingconceptionoftheprocessofshareddecisionmakingandnegotiationbetweenhealthcareprofessionalsandfamily:

96SeeRSudore&TRFried,“Redefining‘Planning’inAdvanceCarePlanning:PreparingforEnd-of-LifeDecisionMaking(2010)153(4)AnnalsofInternalMedicine256at25997McMahanetal,n23at36298MCA,n4,s.799(2016Edition)at20,partA7,http://www.healthprofessionals.gov.sg/docs/librariesprovider2/guidelines/2016-smc-ethical-code-and-ethical-guidelines---(13sep16).pdf;SMCHandbookofMedicalEthics,n78100NMEC,GuideonCommunicationsinACP,n31101SeeHouseofLordsSelectCommitteeReport,n66atpara95;Menonetal,n67102Seee.g.,LASiminoff&MDThomson,“DecisionMakingintheFamily”,inMADiefenbachetaleds,HandbookofHealthDecisionScience(SpringerScience+BusinessMedia,2016)171at173


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Thedecision-makingprocessforbalancingtheburdensandbenefitstowardsthepatientshouldbeaconsensus-buildingprocessbetweenthehealthcareteamandthepatientandfamily…Thehealthcareteamcommunicatestothepatientandthefamilytherealisticassessmentofthepatient’sprognosis,i.e.thereversibilityoftheacuteillness,theseverityofunderlyingdisease,andtheexpectedqualityoflife…Duringsuchdeliberations,thehealthcareteamalsoexploresthevaluesandwishesofthepatientandtheviewsofthefamilyactinginthebestinterestsofthepatient.Thisfairprocessofdeliberationandresolution,sometimesnecessitatingtime-limitedtreatmenttrials,formsthebasisfordetermining,andsubsequentlywithholdingorwithdrawingfutilecare…103

AsTseandTaoobserve,theemphasisisonaniterative,consensusbuildingprocesstoworkoutwhatthepatient’sbestinterestsare.InthecontextofapatientwhohasundertakenACP,therewouldbeaclearerarticulationofhervaluesandgoalsofcare,andthiswouldconstituteafirmerbasisfornegotiationsbetweenphysiciansandfamilyoverdisagreementsconcerningtheinterpretationofthosewishesinrelationtothepatient’scurrentneeds.Theexplicitcontingencyofacareplanalsorecognisesthattherecognitiveandaffectivelimitstowhatapatientcananticipateanddesireinrelationtofuturemedicalconditions,inproportionto,fore.g.,howdistantintimetheyare.104Thecloserintimeandexperienceaprevailingcareplanis,thegreateritsmoralauthorityinspeakingtowhattheperson’svaluesandpreferencesareinrelationtothecurrentmedicalsituation,andhowmuchweightshouldbeaccordedtorespectingthepreferencesembodiedinacareplanorasarticulatedbythedesignatedsurrogates.105Furthermore,patientrequestsforfulltreatmentunderacareplanwouldalsocallforfurtherevaluation,negotiationandjudgmentinthefaceofchangingmedicalconditionsandprognosis.Professionalethicalguidelinesalsoneedtoaddresshowhealthcareprofessionalsshouldapproachasituationwhereconsensusisnotpossible.Familyinvolvemententailsgreatercomplexityashealthcareteamsmustworkoutwhatthereasonsareforthedisagreementanddetermineifthemotivationsarelegitimatelyorientedtowardstheinterestsofthepatientorrevealotherextraneousinterestsatwork.Inthisrespect,theHKHAGuidelinesalsoplacefinaldecision-makingauthoritywithphysicians:

Thefinaldecisionshouldbeamedicaldecision,basedonthebestinterestsofthepatient.However,thehealthcareteamshouldworktowardsaconsensuswiththefamilyifpossible,unlesstheviewofthefamilyisclearlycontrarytothepatient’sbestinterests.106

Theprovisofirstrequiresahighdegreeofcertaintythatthefamily’sdecisionisindeedcontrarytothepatient’sbestinterests.Thisdeferencereflectstheargumentsmentionedaboveforincludingfamilyindecisionmaking.UnderstandingautonomyrelationallyentailsrecognisingthatACPinvolvesindividualsengagingwithpersonsof103HongKongHospitalAuthority,GuidelinesonLife-sustainingTreatmentintheTerminallyIll(Version2,1Dec2015)atpara.4.3.3[emphasisadded;citationsomitted].Seealsoparas5.4.2and5.4.3104Dittoetal,n20at495-496105ThisissubjecttothecaveatthatsomeindividualsmightwantACPstatementstoactaspre-commitmentsagainstunwantedinfluencesthatmightaffectfuturedecisions:Dittoetal,n20at496-497;seeSpranzi&Fournier,n127belowandaccompanyingtext.106HKHAGuidelines,n103atpara.5.4.1


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relationalsignificanceinformulatingtheirvaluesandpreferencesinendoflifecare.Inavulnerablestateofhealth,thepatientwillcorrespondinglybemoredependentonsignificantrelationalothers,andpersonalcarersinparticular,torealisethesepreferences.ThissubjectspatientstotherealitythattheirindividualinterestsmaybesubjecttocompromiseornegotiationintheprocessofACPandtheeventualimplementationofEOLcare.107Secondly,itrecognizesthatfamilysurrogatesmaybesubjecttocognitive,emotional,culturalandfinancialconstraintsinimpartiallyseekingthepatient’sbestinterests.Theindividualpatientshouldnotbesacrificedatthealtaroffamilialorrelationalharmonyandcompromise.Thereshouldbelimitsorboundariestowhenapatient'sinterestsmaybecompromisedorsacrificedtopromotesomeotherrelationalorfamilialinterest.TheHKHAGuidelines’provisotoconsensusbuildingthereforerecognisesthepossibilityofrelationalabuse,evenifinadvertent.Inadefactosharedmodelofdecision-makingundertheMCA,thedutywouldfallonthehealthcareprofessionaltopolicethis.Howshouldwedeterminewhenafamily'sviewsorrequestsareclearlycontrarytothebestinterestsofthepatient?First,ontheassumptionoflegitimacyofarelationalapproachtoACPandendoflifecare,thedeterminationofabusecanbemadeonthebasisofabreachofrelationalnormsapplicabletothesituation.Inthecontextofundueinfluenceincontract,ithasbeenarguedthatthesenormsaredeterminedbysocialconsensus,whilegivingalargemarginoftolerancetovariousvalidconceptionsofthegood.108Second,aprocessofdeliberationinEOLcarecanbearguedtostepoutsidetheboundsofrelationalnormswhenitneglectsorfailstoprotectthepatient'scoreoressentialinterestsandinstead,solelypursuesotherrelationalorfamilialinterestssuchasthefinancialandemotionalwell-beingofthefamily.109Third,wemightbegintodeterminewhatapatient'scoreinterestsarebydrawingadistinctionbetweenapatient'sinterestsinbasicaspectsofhealth,well-being,functioningandtheavoidanceofpainandsuffering,andherpreferencesinhowtheseinterestsaretobemaintainedorsupported.110Ifthefamily'sdeliberationsonmedicaladvicefailtoprotectthepatient'scoreinterests,sacrificethemwithoutcompensatinggaininserviceofanothercoreinterest,orconsistentlyignoreapatient'spriorexpressedwisheswithoutgoodreason,itissubmittedthatthiswouldcrossthelineintoabuse.Inthisrespect,whilethemodelsharesdecision-makingauthoritybasedonthedistinctexpertisethatfamilyandhealthcareprofessionalsbringtothedialogue,itisstillpatient-centricinthatitseektoensuretheprotectionofthepatient’scoreinterests.Theapproachisalsoresponsivelycommunitarianinthatitworksontheassumptionthatapatient’scoreinterestsarenotentirelyself-regarding,butincludeconcernfortheoverallwell-beingoffamilymembersinvariousdimensionssuchasthepsychological,emotional,financialandspiritual,andthatthereisacorrespondingtrustintheir

107InthewordsofBaronessHaleinAintree,n86,“Wecannotalwayshavewhatwewant.”108MChen-Wishart,“UndueInfluence:VindicatingRelationshipsofInfluence”(2006)59(1)CurrentLegalProblems231at247-249109IHyun,“ConceptionsofFamily-CentredMedicalDecisionmakingandTheirDifficulties”(2003)12CambridgeQuarterlyofHealthcareEthics”196at198-199,whodescribestheseasoverlappinginterestswithinthefamilyunit.110AdaptedfromCLevine&CZuckerman,“HandsOn/HandsOff:WhyHealthCareProfessionalsDependonFamiliesbutKeepThematArm’sLength(2000)28JournalofLaw,Medicine&Ethics5at14-15.SeealsofactorsconsideredintheHKHospitalAuthority’sGuidelines,n103atpara5.4.2


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judgmentonsuchmatters.111TheobjectiveoftheACPtrialogue,whicheventuallydevolvesintoadialoguebetweenfamilyandhealthcareprofessionalsoncethepatientlosesdecisionmakingcapacity,involvesabalancingbetweentheseinterestswhentheyareintensionorconflictbyconsideringtherelativeadverseimpactofaproposedcourseofactiononthepatient’scoreinterestsandherrelationalinterestsinthefamily’soverallwell-being.112Toillustratethedynamicsofsuchasharedmodel,whereafamilyinsistsonacurativegoalnotwithstandingthedeterioratingconditionofacancerpatientwithincreasingdistress,healthprofessionalsinaSingaporecancercentreworkedtowardsacompromisewhereitwaspossibletoofferopioidpainreliefwhileallowingthecontinuedadministrationofaclinicallyunproventherapy.Althoughthedosagemaynothavecompletelyrelievedhisdistress,thefamily’swishtopersistinseekingacurewasaccommodatedintheabsenceoftheclearexpressionofthepatient’sgoalsoftreatment.113Presumably,ifthepatienthadindicatedapreferenceforcomfortcare,thismighthavetiltedthebalanceagainstanyattemptatunproventherapy.Incontrast,wheretheeldestsonofanothercancerpatientinsistedondischargetoaccesstraditionalChinesemedicinaltherapy,thiswasrefusedastheTCMprocedureposedarealriskofharmgiventhepatient’scondition.Therewasalsonoindicationthatthiswasinaccordancewiththepatient’swishes,andwasinfactopposedbytherestofthefamily.114Insummary,thestatutorybestinterestsstandardneedstobesupplementedwithashareddecisionmakingprocessthatseekstoachieveconsensusonEOLcarewithACPappointedsurrogatedecisionmakersandotherfamilyintimates.Thismodelishowevercircumscribedbytheneedtoprotectthecoreinterestsofthepatient,responsibilityforwhichfallsprincipallyonhealthcareprofessionals.Thelatterneedtosteercarefullybetweenthepotentiallyconflictingvaluesofpatientwelfare,patientautonomyandtherealityoffamilialinvolvement,connectednessandpossibleover-reach.SuchashareddecisionmakingmodelshouldbeexplicitlyincorporatedintotherelevantprofessionalandEOLethicalguidelines,asisthecaseinHongKong,inordertoencouragegreaterconsistencyinimplementation.C. Respectingpatientswithstrongpreferences,orwithoutadequatefamilysupportAchangingdemographicandsocialcircumstancesinverttheissuejustdiscussed.Itwasassumedthatfamilymembersareeasilyidentifiable,willingandavailabletoprovidesupportandinputsunderashareddecisionmakingmodel.AgrowingcategoryofpatientsarebettereducatedandhavefirmerpreferencesforEOLcare,115whomaycorrespondinglyhaveweakeningfamilyandsocialbondsthatmayresultinalackofmeaningfulsocialsupport.116Theproportionofsingleadultsandmarriedpersons111Blustein,n73at8-9;Etzioni,n61at20112Etzioni,n61at22113MHoetal,“ChineseFamilalTraditionandWesternInfluence:ACaseStudyinSingaporeonDecisionMakingattheEndofLife”(2010)40(6)JournalofPainandSymptomManagement932114TZOoetal,“Theroleofthemultidisciplinaryteamindecisionmakingattheendoflife”(2015)AdvancesinMedicalEthics2:2;doi:10.12715/ame.2015.2.2at3-4115SeeMHoetal,“Thephysician-patientrelationshipintreatmentdecisionmakingattheendoflife:ApilotstudyofcancerpatientsinaSoutheastAsiansociety”(2013)11Palliative&SupportiveCare13116Thiswasadistinctsub-themeinarecentstudyonpatientperspectivesofACPinSingapore:Cheongetal,n33at66


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withoutchildrenaresteadilyincreasing.117ThequestioniswhethertheLivingMattersACPprocessadequatelyaddressestheirneedsindesiringtoframeandcontrolthedecisionmakingprocessaftertheyhavelostcapacity.Thelossofcapacityitselfimposesadependencyonsuchindividuals,butshouldtheyhavetobecontentwithacceptingthedefaultmodelinvolvingdeliberationsbetweenhealthcareprofessionalsanddistantfamilymembers,oramongstthehealthcareteammembersalone?118Inaddition,ifindividualautonomyisindeedtheprimaryguidingprincipleinACP,thentheMCAframeworkgiveslittlecomforttoindividualswhohavespecificandstrongviewsontheirmedicaltreatmentattheendoflife.Nomatterhowinvolvedanddetailedtheiradvancecareplans,theyarenotlegallybindingonhealthcareproviderswithinthisframework.119Unfortunately,suchindividualshaveveryfewformaloptionsapartfromtheAMDAoradvancedirectiveatcommonlawinretaininggreatercontrolovertheirEOLcare.Theformerishighlyrestrictiveinscope120andimplementation,121whilethelatterlacksthelegalcertaintyofrecognition,122legalprotectionforhealthcareprofessionals,andaccessibilityasthereisnoregistryserviceapartfromstandardAMDsundertheAMDA.123Evenassumingtheavailabilityofamoregeneral,widerangingadvancedirective,thecognitiveandaffectivelimitsofindividualstomakeanticipatorydecisionsonhealthcare,particularlyfraughtonesattheendoflife,arewelldemonstrated.Manypatientsalsodoubtwhethertheywouldremainthesamepersonunderchangedmedicalcircumstances,andthereforedoubtthewisdomoftyingtheirdifferentselvestoanadvancedirective.124Recognisingthisuncertaintyastofuturemedicalscenariosandcontinuityofself,manypatientsprefertoleavedecisionmakingtofuturedialoguesbetweentheircarersanddoctorswhenthemomentfordecisionarises.Inaddition,USstudiesrevealthatadvancedirectivesoftendonotaffectthequalityofEOLcareorimproveclinicianandsurrogateknowledgeofpatientpreferences.125

117NationalTalentandPopulationDivision,PrimeMinister’sOffice,“PopulationinBrief2015”(September2015),https://www.strategygroup.gov.sg/docs/default-source/Population/population-in-brief-2015.pdf?sfvrsn=0:Theproportionofsinglemales/femalesinthe45-49agegroupstoodat14%(up0.6%from2004)and15.2%(up2.2%from2004)formenandwomenrespectivelyin2014;theproportionofevermarriedresidentfemaleswhoarechildlessbetween40-49yearsrosefrom7.1to11.2%between2004and2014.TheMCAwasrecentlyamendedtoallowforprofessionaldoneesofaLPAtoaddresstheneedsofagrowingpopulationofsinglesandelderlypersonslivingalone:CJTan,OpeningSpeechattheSecondReadingoftheMentalCapacity(Amendment)Bill2016(14March2016),https://www.msf.gov.sg/media-room/Pages/Opening-Speech-by-Mr-Tan-Chuan-Jin-at-the-Second-Reading-of-the-Mental-Capacity-(Amendment)-Bill-2016-in-Parliament-14-Mar.aspx.118Foranexampleofthelatterprocess,seeTan&Chin,n55at40-41119Seesupran63andaccompanyingparagraph.120TheAMDonlyappliesto‘extra-ordinarylifesustainingtreatment’,andthisexplicitlyexcludespalliativecare,nutritionandhydration.Italsoonlyappliestoterminalillness,whichisclinicallydifficulttopredict,andwouldalsobydefinitionnotapplytopatientsinapersistentvegetativestate:supran2,s.3readwiths.2ands.9121HealthcareprofessionalsandinstitutionsmaynotaskapatientifshehasexecutedanAMD,andcanonlymakeasearchoftheAMDregistryifthepatientiscertifiedterminallyillbytheattendingphysician:AMDA,n2,ss15and9respectively.122Atcommonlaw,theonusofproofisontheclinicianrelyingonit,andwherethewithholdingorwithdrawaloflifesustainingtreatmentisinvolved,clearandconvincingproofisrequiredofthepatient’spriorwish:HEvAHospitalNHSTrust[2003]2FLR408(HighCourt).123AMDA,n2,s.6124MSpranzi&VFournier,“Thenear-failureofadvancedirectives:whytheyshouldnotbeabandonedaltogether,buttheirroleradicallyreconsidered”(2016)19(4)MedHealthCareandPhilos563125Sudore&Fried,n96atfn9-13.


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ThisraisesthequestionwhetheritmightbenecessaryatalltorevisetheexistingAMDAframework,ifinformalACPswilljustaswellservethesefeaturesofadvancedirectivesforthosemindedtocompletethem.ItisarguedthatthisturnsonhowinclusivewewanttheACPframeworktobe.ThereislittledirectevidencefromSingapore,butelsewhere,qualitativestudiesrevealthatthereisadistinctbutstableminorityofpatientswhowanttoretaincontrolovertheirendoflifecare.Thisisconsistentwiththeirpersonality,theirdistrustofleavingmattersentirelyinthehandsofunknowndoctorsordistantfamilymembers,andtheclarityoftheirconvictionsonparticularclinicalinterventionsandtheirgoalsofcare.126SpranziandFournierpointoutthatwhileamajorityofpatientshavedifficultiesandreluctanceincommittingcarepreferencestopaper,thereisadistinctminorityofpersonswithfirmviewswhowouldliketobeabletoexercisecontrolinEOLcare.Forsuchindividuals,thereisaneedforauthoritativeprocessesfromwhichtheycandrawconfidencethatdecisionswillbetakeninaccordancewiththeirpreferences.127Aminoritynotwithstanding,thelegalframeworkshouldofferafacilityforpatientswhodesiregreaterassurancethattheirgoalsandpreferenceswillberecognisedandimplemented,withsuitablelegalprotectionforhealthcareprofessionalswhoactontheseadvancedirectives.128ThisembraceoffacilitatingdiversepatientapproachestoEOLcareisconsistentwiththerecognitionofindividualpatientautonomyinACPcommunications.TheACPframeworkshouldnotgeneraliseorinsistonaone-sizefitsallsolution.129CommentatorsarguingalongtheselinesalsonotethatsuchrecognitionandimplementationofmoreflexibleadvancedirectivesareequallyconsistentwiththedefaultframeworkundertheMCA,givenitsoverarchingprincipledemphasisonrespectingandengagingtheindividualpatient’sautonomy.130Inthelightoftheproblemsassociatedwithcompletingandenforcingadvancedirectives,thepolicyrecommendationsintheUSinrelationtolegalinstrumentshavealsoshiftedtodurablepowersofattorneythatempowertheindividualpatienttoauthoriseatrustedrelationorlovedonetomakedecisionsontheirbehalf.131Inthecontextofadvancecareplanning,thisappointmentofalegallyrecognisedhealthcareproxyhasgreatersignificancefortworeasons.First,despitecriticismsthathealthcareproxiesoftendonotpredictthechoicesoftheirappointerswell,132thismaywellbe

126Spranzi&Fournier,n124at566:“Othersenvisagedwritingthembecausetheywantedtheirownvoicetosilenceothers’:veryoften,theywerepeoplewhoeitherlivedalone,wereinsituationsofpotentialconflictwithfamilymembersandotherlovedones,orweredeeplymistrustfulofmedicine.Oneofthemtoldus:‘‘Theultimatedecisionsshouldnotbelongtodoctors,theyarestrangers.ThatisthereasonwhyIwroteADs;andIdidsobecauseIamalone,thereisnobodyaroundanymore””.127Spranzi&Fournier,n124at565:About15%intheirstudycohortvaluedcontrolovertheirfuture,andwerewillingtoaccepttheconstraintsthatadvancedirectivesplaceontheirfutureselves.Correspondingly,asystematicreviewofstudiesonpatientpreferencesrevealedthatpatientswhocompleteadvancedirectiveshavemorestablepreferencesthatthosewhodonot:Auriemmaetal,n15at1091.128SeeLSCastilloetal,“LostinTranslation:TheUnintendedConsequencesofAdvanceDirectiveLawonClinicalCare”(2011)154(2)AnnalsofInternalMedicine121at124-125129JJRheeetal,“UptakeandImplementationofAdvanceCarePlanninginAustralia:findingsofkeyinformantinterviews”(2012)36AustralianHealthReview98at102;BSKoh,“LivingwiththeEndinMind:AStudyofHowtoIncreasetheQualityofDeathinSingapore”(LienFoundation,Singapore,2011),c.3at20-22,http://www.lienfoundation.org/sites/default/files/living_with_the_end_in_mind.pdf130Chan,n79at122131Sabatino,n7at225132Seee.g.AFooetal,“DiscrepanciesinEnd-of-LifeDecisionsBetweenElderlyPatientsandTheirNamedSurrogates(2012)41(4)AnnalsOftheAcademyofMedicineSingapore141;DIShalowitzetal,“Theaccuracyofsurrogatedecisionmakers:asystematicreview”(2006)166ArchInternMed493


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besidethepointinmanycases.133Hawkinsetalobservedintheirstudythatmanypatientsareinfactmoreinterestedinmetapreferencesrelatingtoprocessofdecisionmaking–towhatextenttheywanttobeinvolved,howmuchleewaytheywanttoconferonsurrogates,andwhoelsetheywouldwanttoincludeinthediscussionsonEOLcare.134ParticipationbytheappointedproxyinACPpreparestheappointeefortherolebydevelopingbetterunderstandingandcommitmenttothepatient’svaluesandpreferencesinareflectivedialogicalprocess.135Finally,writtenlastingpowersofattorneyareusefulwhenthereisdisagreementwithinthefamily,betweenfamilyandthehealthcareteam,andwhenpatientsappointanon-traditionalintimateasaproxydecisionmaker.136Unfortunately,theinstrumentoftheLPAundertheMCAinSingaporedeprivesthemofthisalternativefacilitybecausethepowersofadoneeofaLPAdonotextendto(a)lifesustainingtreatmentor(b)anyothertreatmentnecessarytopreventaseriousdeteriorationinthepatient’scondition.137ThiseffectivelyeschewsthenotionofahealthcareproxyinSingapore.138ItmightbearguedthatthiscanstillbeachievedpracticallybecausetheMCArequiresanyonenamedasaso-calledhealthcarespokespersonshouldbeconsultedforthatpurpose.139Buttheconsultedspokespersonhasnolegalauthoritytomakeandtakeresponsibilityforthedecision,howeverqualifiedshemightbeforthatrole.Insituationswherefamilyandotherlovedonestakedifferentpositionsonwhatconstitutesthebestinterests,thentherelationshipandunderstandingdevelopedbythehealthcarespokespersonduringACPacquiresnoparticularlegalsignificanceunderthepresentregime.Inasystemwherehealthfinancingissignificantlypersonalorfamilyreliant,conflictscanariseoverthecourseofcarebetweenfamilymembers.Itwouldnotbesurprisingifincapacitatedpatientshadpriorspecificpreferencesonwhoshouldundertakeresponsibilityforproxydecisionmaking.140Thereisatpresentnoclearlegalresolutionofwhoamongstdisagreeingfamilymembershasthedecisionmakingauthoritytohelpdirectthecourseofmedicalcare;ineffect,theattendingphysicianislefttoresolvethisconflict.ThismaystillarisenotwithstandingthebesteffortsatACPinvolvingfamilymembersbecausedisagreementsmayarisewithpersonsnotinvolvedearlierinACPdiscussions.LegalrecognitionoftheappointmentofahealthproxyundertheACPprocess,ifsoappointed,wouldputthisuncertaintytorestevenifitcannotforestalldisagreementandconflict.

133SeeSKim,“ImprovingMedicalDecisionsforIncapacitatedPersons:DoesFocusingon“AccuratePredictions”LeadtoanInaccuratePicture?”(2014)39(2)JournalofMedicine&Philosophy187134Hawkinsetal,n23;SeealsoMcMahanetal,n23135MGKuczewski,“NarrativeViewsofPersonalIdentityandSubstitutedJudgmentinSurrogateDecisionMaking”(1999)27JournalofLawMedicine&Ethics32at34-35;JJFinsetal,“ContractsCovenantsandAdvanceCarePlanning:AnEmpiricalStudyoftheMoralObligationsofthePatientandProxy”(2005)29(1)JournalofPainandSymptomManagement55at64136JATulsky,“BeyondAdvanceDirectives:ImportanceofCommunicationSkillsattheEndofLife”(2005)294(3)JAMA359at361137MCA,n4,s.13(8)138Onthispoint,therealsoappearstobeacriticalmisconceptionamongstsomelocalhealthcareprofessionalsinthe“valueofaformalACPbeingmedicallybindingandlegallylegitimate,intheformofalastingpowerofattorney…”:Cheongetal,n33at67.Asexplainedinthemaintext,thereisnothinginlegislationorcommonlawthatgiveseffecttothispatientintentinthestandardisedACPdocumentedcareplans.139MCA,n4,s.6(8)(a)140SeeTan&Chin,n55at15.


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TheobvioussolutionseemstobetodoawaywiththerestrictionsonthepowersofadoneeofaLPAundertheMCA.Concernsaboutopeningthedoortoabuseareperhapsoverblownbecausecarecanonlybedeliveredinconjunctionwiththeopinionsofhealthcareprofessionalsinashareddeliberativemodeloutlinedabove.Furthermore,thepowersofadoneearestillsubjecttothebestintereststest,whichrequiresconsiderationofthepriorviewswishesandpreferencesoftheincapacitatedpatient.Ifadoneemakesdecisionsindisregardofthesemattersandconsensusnotpossible,otheractorsinthehealthcaresystemmayrespondtoprotectthebestinterestsofthepatientbyreferringthemattertothehospitalethicscommittee141or,ultimately,seekingdirectionsfromacourtwithjurisdiction.142ThedrawbackoftheLPAisthatitsproceduralrequirementsandcostmaybebarriersthatinhibituptakeduringACP.Thestandardform1oftheLPAprovidesonlyforthepowertomakemedicaltreatmentdecisions,withoutanydirectionsforthedoneeoftheLPAonhowsheshouldgoaboutdeciding.143AnyspeciallytailoredprovisionsintheLPAwillrequiretheservicesofalawyer.ItmaybeworthconsideringlegallyrecognisingahealthcarespokespersonappointedundertheLivingMattersACPprocessintherespectivestandardisedcareplans.ThiswouldallowpatientstheconvenienceofproducingaspeciallytailoredLPAforthepurposesofhealthcareasaproductoftheACPprocesswithouthavingtheengageaseparateprocessfortheLPA,whichcoversamuchwiderrangeofpersonalandpropertymatters.Suchaspokespersoncouldbeconferreddecisionmakingpowersonlyinrespectofhealthcaredecisions,andnotanyotherdecisionsrelating,forexample,tothedispositionofproperty.TheprocessofACPalreadyprovidesprecautionarymeasureslikethewitnessingbytheACPfacilitatorandtheattendingphysician,andwouldnotrequireadditionaloversightmachineryascomparedtotheLPAregistryundertheMCA.AnappointedhealthcareproxyforthispurposeshouldberequiredtoparticipateinthediscussionsanddeliberationsleadingtotheformulationandrevisionoftheACPplan,inorderthatthisappointeehavetherequisiteunderstandingandpreparationtoactasahealthcareproxy.Onthewhole,aspecialisedhealthcareproxywouldassistpatientsinstrengtheningthebasiclegaloutcomesofACPinensuringthataproxywhoismostknowledgeableofthepatient’svaluesandpreferences,andbestpreparedtoundertaketheresponsibilitiesoftheposition,islegallyrecognised.D. ImplementingACPs–thelasthurdleFinally,thereisalsoaconcernthattheremaybeanimplementationgapbetweenthedocumentationofthepatient’sstatementofwishesorcareplan,anditsactualimplementationbyhealthcareworkersacrossthedifferentsettingsinthehealthcaresystem.EvidenceintheUSdemonstratesthatapartfromlackofavailabilityandspecificityofadvancedirectives,thelackoforintegrationintomedicalorderswasanothershortcomingthatledtothedesignofthePOLSTform.144InSingapore,do-not-resuscitateordersarenotlegallyregulated,butoccurfrequentlyinhospitalbased

141SeeMinistryofHealth,LicensingTermsandConditionsonHospitalEthicsCommittees(7Dec2012),online:https://elis.moh.gov.sg/elis/info.do?task=guidelines&section=GuidePHMCTnC142MCA,n4,ss.19and20143OfficeofthePublicGuardian,Resources:https://www.publicguardian.gov.sg/opg/pages/Forms.aspx144CSabatino&NKarp,“ImprovingAdvancedIllnessCare:TheEvolutionofStatePOLSTPrograms”(WashingtonDC,AARPPolicyInstituteReport,2011)at2-3;


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generalandintensiveunitcare.145Thecriteriaforplacingsuchordersareoftenunclearandvarybetweeninstitutionsanddecision-makingisdoneinsitu.146DecisionsonDNRshavealsogenerallybeenobservednottoinvolvepatientinput.147Incontrast,medicalordersconcerningothertypesoflifesustainingtreatmentwereinfrequent,althoughsomehospitalshavesinceinstitutedstandardisedorderformswhichdetailthelimitsofcareforeachpatient.148Atthenationallevel,theLivingMattersprogrammeappearstoaddressthisissuebymodellingitsPreferredCarePlan(‘PCP’)ontheUSPOLSTparadigmdescribedabove.149ThePCPhoweverdiffersfromPOLSTinacoupleofways.First,itisnotclearfromthePCPthatitisinfactamedicalorderthatseekstoimplementpatientpreferences,whethercommunicateddirectlyorviaahealthcareproxy,intoactionablemedicalordersfortreatmentintherelevanthealthcaresetting.TheUSPOLSTtemplateindicatesclearlythatitisaphysicianordersheet,andinstructshealthcareworkers“tofirstimplementtheseorders,thencontact(the)physician”.150Incontrast,thePCPisdescribedas“adocumentthatcapturesthepatient’swishesregardingfuturemedicalcare.”Itthenqualifiesthatwiththeobservationthatthedoctor“willalwaysactinthepatient’sbestinterests”,whichmustrefertothestatutorybestinterestsstandardthatonlyrequirestheconsiderationofthesewisheswithoutnecessarilyindicatingaparticulartreatmentoutcome.151Further,thenotestothePCPmakesclearthatitisonlymeanttoguideandnot‘dictate’treatment.152However,thesubstanceoftheplan’slistedoptionsiscouchedindirectiveterms:whenthepatientisincardiopulmonaryarrest,eitherproceedwithCPR,or“DONOTattemptCPR.…Whennotincardiopulmonaryarrest,followordersinB,CandD.”153Thereisalsoalackoflegal,regulatory,orprofessionalclarityastothestandingofthePCPindeterminingthetreatmentsadministeredtoaneligiblepatientwithadvancedillness.Thereis,thusfar,noexpressmentionofLivingMatterscareplansinanyoftheapplicablelegislationinSingapore,whiletheregulationspromulgatedunderthePrivateHospitalsandMedicalClinicsActonlyrequirethatapatient’sadvancecareplanbeincludinginherinstitutionalmedicalrecords.154TheonlyrelevantprofessionalstandardsorethicalguidancerelatestoACPcommunications,ratherthanprofessionalclinicalstandardsofimplementingACPs.155Thus,thereareconcernsthattheambiguityofthePCPandthelackoflegal,regulatoryorprofessionalrecognitionwouldimpedeitsimplementationacrossdifferentcaresettings,particularlywhenpatientswithadvancedillnessarereferredtoemergencymedicalservicesoracutehospitalsfromtheirownhomesoranursinghomeinamedicalemergency.Consistentwiththeseobservations,145Seee.g.JALowetal,“CareofElderlyPatientswithDNROrdersinSingapore–ADescriptiveStudy”(1998)39(10)SingaporeMedJ456;IYOLeong&DYHTai,“ThePracticeofForegoingLifeSupportintheCriticallyIll“OldOld”:ASingaporePerspective”(2001)30(3)AnnAcadMedSingapore260;Phuaetal,supran69146SSahadevan&WSPang,“Do-Not-ResuscitateOrders:TowardsaPolicyinSingapore”(1995)36SingaporeMedicalJournal267147Phuaetal,n69at1298148Phuaetal,n69at1299149SeeAppendix2below150Hickmanetal,n16atS29151Appendix2,p29152Appendix2,p30153Appendix2,p29,SectionA154MinistryofHealth,LicensingTermsandConditionsonMedicalRecordsforHealthcareInstitutions(6Aug2015)atparas4.2(j)and5.2(i)155NMEC,GuideonCommunicationinACP,n31


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thelocalpresshasreportedincidentswhereemergencyworkersproceededtoadministercardio-pulmonaryresuscitationinaccordancewithstandingtreatmentprotocolsnotwithstandingtherefusalofsuchtreatmentinseveralpatients’ACPcareplans.156SimilaradvancedirectiveimplementationissueswereexperiencedinTaiwanwiththeHospicePalliativeCareAct.157TherehastodateonlybeenonestudypublishedontheuseofamodifiedPOLSTinSingaporewhichdemonstratedthatACPandtheuseofamodifiedPOLSTformreducedhealthcarecostsforpatientsinnursinghomeswithinaregionalhealthservicehelmedbypalliativecarestafffromTanTockSengHospital.However,itcannotbereadilyinferredfromthestudywhetherthesecostsavingsalsocorrespondwitharespectforandimplementationofspecificPCPdirectivesintotheactualcarereceived.Thestudydidhoweverfindthattherewereonthewholereducedhospitaladmissionsandshortenedinpatientlengthsofstay.158Furthermore,thestudywasdoneinthecontextofaspecificregionalhealthsystemanditisunclearwhetherthesefindingscouldbeextrapolatedtotheentirehealthcaresystem,andtocareacrossdifferentregionalclusters.Theimpactonrecoursetoemergencyservicesontheoutcomesisalsounclear.E. DevelopingclinicalprotocolsforPOLSTimplementationTheimplementationofACPoutcomesisperhapstheclearestjunctureatwhichthelawcanprovideauthoritativesupport.AnAustraliansurveybyRheeetalidentifiedtheclarificationoflegalstatusofACPandstandardisationimportantforimplementation,asprofessionalfearofliabilityandexpressedneedforindemnityincarryingoutanACPwasidentifiedasasignificantbarrier.159TheUSliteraturedocumentsthreebroadstrategiestoimplementandincentivisetheuseofPOLSTinvariousstates:(a)explicitlegislation;(b)regulatorymeanstargetingtherelevanthealthcareactors;and(c)establishingclinicalconsensus.160Often,thesestrategieswillbeprecededbypilotstudiestodevelopanevidencebaseforwiderimplementation.161ThequestionthereforebecomeswhetherfurtherdevelopmentanduseofanexplicitPOLSTtypeorderiscalledforintheSingaporecontext.First,thereneedstobesomeclarityonthedifferencebetweenanadvancedirectiveorcareplanandaPOLST.Thelatterisan“actionablemedicalorderdealingwiththehere-and-nowneedsofthepatient”.162Thisordershouldonlybecompletedafterdiscussionwithaseriouslyillpatientorherproxyoftheirmedicaloptionsinthecontextofthepatient’scurrentcondition.ThePOLSTreflectstheinterpretationandimplementationofthepatient’sorproxy’sgoalsofcareintomedicalordersthatarestandardisedandactionablewithinandwithouttheinstitution.Suchlegalorregulatorystipulationswouldcoverthecontentoftheorder,therequiredsignatoriesforvalidity(e.g.whetherpatientsortheirproxiesshouldsign,inadditiontoatreatingphysicianorotherdesignatedhealthcareprofessional),andtheappropriateclinicalormedicalsituationswhenPOLSTshouldbeoffered.Thus,legalorregulatorystandardisationthatpromotesclarityofobjectivesand

156JChew,“HonouringLastWishes”,StraitsTimes(10Jul2014)157TYChiu,“EndofLifeDecisionMakinginTaiwan”inRHBlank&JCMerrickeds,End-ofLifeDecisionMaking:ACross-NationalStudy(1996)at176-177158Teoetal,n11at434.159Rheeetal,n129at100-101.160Pope&Hexum,n26at356-360;Sabatino&Karp,n144at10,13161Pope&Hexum,n26at359-360162Sabatino&Karp,n144atv


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portabilityarecriticaltoservingthesefunctions.Finally,regulationsshouldcorrespondinglyprovidehealthcareworkerswithlegalprotectionwhencomplyingwiththetermsofaPOLST.163ThereisasubstantialbodyofevidencefromtheUSandothernationsthatPOLSTsincreasetheconformityofcaredeliveredwithpreferencesindicatedinadulycompletedPOLST.164However,criticismsofPOLSTremain.TheprincipalissueraisedisthatthereisverylittleevidenceestablishingthatprocessesleadingtotheexecutionofaPOLSTaccuratelyreflectapatientorsurrogate’scurrentpreferences.165ThesecondconcernisthatunusualcombinationsofordersinaPOLSTform,suchasaDNRordercoupledwithfulltreatment,leadstoconfusionabouthowthePOLSTshouldbeimplemented.166Thirdly,otherspointoutthatPOLSTformshavebeenofferedinappropriatelytopatientswhoarenotsuitable–e.g.nursinghomeresidentswhoarenotseriouslyillandwhosepreferencesaboutEOLtreatmentsmaythereforebelessstable.167Insuchsituations,POLSTusagewoulddetractfrompatient-centreddecision-makinginthemoment,especiallyintheabsenceofamechanismtoensurethatregularreviewsofPOLSTaredonewhenclinicalstatuschanges.168ThechallengesinadoptingaPOLSTtypesystemrevealsatensionbetweenincreasingcertaintyofimplementationandrecognisingtheuncertaintyorinstabilityofpatientandproxypreferences.InahealthcaresystemlikeSingapore’s,thereisincreasingemphasisonthecorrectsitingofcare,andthereforegreatertransferabilityofpatientsbetweenhealthcareinstitutions,intermediateandlongtermcarefacilities,hospicesandhomes.ThisincreasestheneedforbettersystemiccoordinationofcarethroughtoolslikePOLST.Inaddition,standardisationandappropriatelegalprotectionsforimplementationbythespectrumofhealthcareworkersdeliveringroutineoremergencycarewillfacilitateadherencetoPOLSTstipulations.However,POLSTusagemaydetractfrombetterquality,patient-centredcareiftheyarerigidlyimplementedwithoutproperreviewmechanismstoensurethattheyaresufficientupdatedespeciallywhenthereisamaterialchangeinthepatient’shealthconditionandcaregoals.ThisalsodependsonthedevelopmentofbestpracticesonwhentoofferPOLSTtopatients,howtoconsistentlyinterpretvariouspermutationsofPOLSTorders,anddetermineunderwhatcriteriaoftemporalcurrencyPOLSTsarevalidlyactionable.Thesefeaturessuggestthataregulatoryroutetoimplementationis

163JEJesusetal,“PhysicianOrdersforLife-SustainingTreatmentandEmergencyMedicine:EthicalConsiderations,LegalIssuesandEmergingTrends”(2014)64(2)AnnalsofEmergencyMedicine140at142-143164SEHickmanetal,“UseofPOLSTPrograminClinicalSettings:ASystematicReviewoftheLiterature”(2015)63JournaloftheAmericanGeriatricsSociety341165Hickmanetal,n164at348;Amorerecentpreliminarystudyinvolving28participantsrevealeddiscordanceinaminorityofcases,theleastbeingordersrelatingtoCPRandthemostinrelationtodecisionsaboutantibiotics,althoughinmorethanhalfofthoseinstances,participantswerenotinclinedtofurtherdiscussthediscrepancy:SEHickmanetal,“TheQualityofPhysicianOrdersforLife-sustainingTreatmentDecisions:APilotStudy”(2017)20(2)JournalofPalliativeMedicine155at159-160.166TASchmidtetal,“PhysicianOrdersforLifeSustainingTreatment(POLST):lessonslearnedfromtheanalysisoftheOregonPOLSTRegistry”(2014)85Resuscitation480167CaliforniaAdvocatesforNursingHomeReform,PhysicianOrdersforLifeSustainingTreatment:ProblemsandRecommendations(CANHR,SanFrancisco,2010)at5;http://www.canhr.org/newsroom/newdev_archive/2010/POLSTWhitePaper.html168KAMooreetal,“TheProblemswithPhysicianOrdersforLife-SustainingTreatment”(2016)315(3)JAMA259


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preferabletolegislativeorprofessionalapproaches.169Coordinationbyaregulatoryagencyforhealthcareservices,suchastheAIC,wouldallowformoreresponsiveadaptationsofthesystemanditsdocumentationinthelightofadevelopingevidencebase,andensuregreaterauthoritativenessofthePOLSTforimplementationacrossdifferentsectorsinthehealthcaresystem.Nevertheless,theremaybescopeforlegislativeinterventionofsomesortiflegalprotectionisthoughtnecessarytopromoteusageandimplementation.VariousUSstateshaveenactedsuchprotections.170InSingapore,theAMDAprotectionunders.9oftheActaretoospecifictoextendtonon-statutoryinstrumentssuchasPOSLTorevenadvancecareplans.However,thesection7generaldefenceundertheMCAcouldpotentiallyservethisfunctionifitisbasedonclearerprofessionalEOLguidelinesonthestatusandsuitabilityofPOLST.Inthisscenario,ahealthcareemergencystafforprofessionalwouldbeactingreasonablyininferringthatavalidlycompletedPOLSTwouldreasonablyreflectanincapacitatedpatient’sbestinterests,withinthemeaningofs.6oftheMCA.Thepre-conditionforsection7isthatthepatientmustlackdecisionmakingcapacity;patientswhostillpossesscapacitycanoverridewhataPOLSTsays.Section7wouldthenconferthesameprotectionordefenceasifthepatient’sconsentweregivenforimplementingthetermsofaPOLST.Shoulds.7notprovidesufficientcomforttoemergencyworkersandhealthcareprofessionals,thenamorespecificlegislativeprotectionwouldbeneeded.IV. CONCLUSIONAdvancecareplanningoffersthepromiseofmorepatient-centredcarethatappropriatelyrespectstheirvaluesandbeliefs,asdeterminedinthecontextofcloserelationshipswithfamilymembers,otherintimatesandhealthcareproviders.ThethrustoftheLivingMattersprogrammeistoopenupcommunicationchannels,encourageindividualandfamilialreflectiononrelevantvaluesandbeliefsinrelationtohealthcareneedsandrecordingofthesedeliberationsinordertofacilitateaccessbysubsequenthealthcareprofessionals.Themoveawayfromformalbindingadvancedecisionsisrootedinbetterunderstandingofthechallengesandburdensthatsuchdecisionsraise,infavourofpreparingpatientsandtheirappointedsurrogatesforin-the-momentdecisionmaking.ThelegalandprofessionalethicalframeworkforLivingMattersACPneedstoclarifythedecisionmakingstandardandmodelfordeliberationwhenACPhasbeenengaged.Itisarguedthatabestinterestsstandardthatseeksauthenticdecisionsthatbestreflectthevaluesandpreferencesofthepatient,determinedthroughashareddecisionmakingprocesswherebothprofessionalandfamilialagentshavestandingandauthoritytoworktowardsmutuallyagreedoutcomes,wouldbestresolvethepotentiallyconflictinginterestsandperspectivesatstake.Thereneeds,however,tobeabackstopprotectionforthecoreinterestsofavulnerablepatientwhosefamilyproxiesarenotadequatelyweighingorengagingsuchinterests.Secondly,fortheACPframeworktobemoreinclusiveofthepluralityofindividualpatientcontexts,perspectivesandvalues,morerobustlegaltools–moreflexibleadvancedirectivesandhealthcarerelatedlastingpowersofattorney–needtobe

169SeeintheUScontext:KLCerminara&SBogin,“APaperAboutaPieceofPaper:RegulatoryActionastheMostEffectiveWaytoPromoteUseofPhysicianOrdersforLife-SustainingTreatment”(2008)29JournalofLegalMedicine479170Sabatino&Karp,n144at11


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introducedtocatertopatientsthatdonotfitwithintheidealshareddecisionmakingmodelofACPdeliberationsandimplementation.Lastly,thePOLSTmechanisms,whicharedistinctfromACPdocumentation,needlegalandregulatoryinterventionforeffectiveco-ordinationinexecution.Thiswillbettertranslateupstreameffortsbytheaffectedpartiesintotangiblecare,treatmentandpalliativeoutcomesthatarerightforthepatientasarelationalindividual.


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Disease Specific Advance Care Plan (General) Appendix 1

This Advance Care Plan (ACP) captures and reflects, as far as possible, the patient’s wishes regarding future healthcare if the patient lacks mental capacity to make his/her own healthcare decisions. The doctor will always act in the patient’s best interests and everyone shall be treated with dignity and respect. The Disease Specific (DS) ACP discussion is held for patients with progressive chronic illness by a certified ACP facilitator.

Patient’s Particulars

Name:

NRIC / ID No:

Gender:

Date of Birth:

Institution/ Programme Name:

Place of Documentation:

Date of Session:

This plan is based on discussions with (May select more than one option)

Patient Primary Nominated Healthcare Spokesperson Secondary Nominated Healthcare Spokesperson

A

Serious Complication with Low Chance of Survival: If I have a serious complication from my illness, so that I was facing a prolonged hospital stay, requiring ongoing medical interventions AND my chance of living through this complication is low (for example, only 5 out of 100 patients will live), I would choose the following (in both situations, I want treatment to keep me as comfortable as possible):

I want all treatment I need to live as long as I can. Staying alive matters more than anything else Stop all efforts to keep me alive, allow natural death to happen. How I live my live means more to me than how long

I live I am not sure what I would choose if this happens

B

Serious Complication with Loss of Ability to Move Around or Communicate: If I have a serious complication from my illness and have a good chance of living through this complication, but it was expected that I would never be able to either walk or talk (or both) and I would require 24 hour nursing care, I would choose the following (in both situations, I want treatment to keep me as comfortable as possible):



C Serious Complication with Mental Incapacity: If I have a serious complication from my illness and have a good chance of living through this complication, but it was expected that I would never know who I am or who I am with and I would require 24 hour nursing care, I would choose the following (in both situations, I want treatment to keep me as comfortable as possible):



D Cardiopulmonary Resuscitation (CPR): If I have a sudden event that causes my heart and breathing to stop, I would choose the following:

Attempt resuscitation Do not attempt resuscitation (No cardiopulmonary resuscitation, No CPR) under any circumstance, allow natural

death to occur Do not attempt resuscitation if the treating physician believes the chance of surviving the attempt is low.

E Severe Breathlessness (Discuss if appropriate) If I have an episode where I am unable to breathe on my own, I would choose the following:

Attempt to use any appropriate non-invasive method, such as BIPAP, to assist my breathing AND

Use mechanical ventilation if non-invasive methods fail Do not use mechanical ventilation if non-invasive methods fail


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Do not attempt to assist my breathing by non-invasive methods, such as BIPAP, or mechanical ventilation

F If I have chosen to continue appropriate treatments to help me live as long as I can in ANY of the above situations, I would want treatment to stop for the following outcomes I find unacceptable (these could include length of time, more complications, discomfort, or burden on family). They include:

G Other Important Notes:

Patient’s Particulars:

Name:

NRIC No: Signature: Date:

Primary Nominated Healthcare Spokesperson: Name:

Relationship:

Contact No: Signature & Date:

Secondary Nominated Healthcare Spokesperson: Name:

Relationship:


Facilitator: Name:

Last 4 digits of NRIC:

Signature & Date:

Physician-in-charge: Name:

MCR No: Signature & Date:

Personal Data Protection Act (PDPA) – Client Consent I understand that the information contained in this ACP document will be stored in hard copy and/or soft copy by this/my organisation using reasonable security measures to ensure that my information is only accessed for legitimate reasons by this/my organisation staff members and transmitted to external healthcare providers caring for me.

H Other Instructions: I have discussed my wishes for my future healthcare plan with the above substitute decision makers and the facilitator. When I am unable to communicate for myself or unable to understand what the care providers are saying to me, I would want the person I have chosen to:

Strictly follow my wishes. Do what he/she thinks is best at the time, considering my wishes.

Directions For Healthcare Professionals

When completing the “Disease Specific ACP Form (General)” document: § Any incomplete section of the Disease Specific ACP Form (General) will require physician’s discretion, as indicated. § Tick þ all relevant boxes in the form. § Photocopies and faxes of signed Disease Specific ACP Form (General) are valid. § Place this document at the front of the patient’s case notes during each hospitalization. § This document serves to guide and not dictate medical treatment. § The patient may verbally change his/her preferences. § Contact the facilitator or physician-in-charge for any queries.

Review Of This Disease Specific ACP Form (General)

Disease Specific ACP Form (General) should be reviewed if: § The patient is transferred from one care setting or care level to another, or § There is substantial change in the patient’s health status, or § The patient’s treatment preferences change.


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PHOTOCOPIES OF THIS FORM ARE TO ACCOMPANY THE PATIENT UPON TRANSFER OR DISCHARGE

Preferred Plan of Care (PPC) Appendix 2

This Advance Care Plan (ACP) captures and reflects, as far as possible, the patient’s wishes regarding future healthcare if the patient lacks mental capacity to make his/her own healthcare decisions. The doctor will always act in the patient’s best interests and everyone shall be treated with dignity and respect. The PPC discussion is held for patients with advanced illness by a certified ACP Facilitator.

Patient’s Particulars

Name:

NRIC / ID No:

Gender:

Date of Birth:

Institution/ Programme Name:

Place of Documentation:

Date of Session:

This plan is based on discussion(s) with (Select all appropriate options) Patient Primary Nominated Healthcare Spokesperson Secondary Nominated Healthcare Spokesperson

This discussion was held with the patient’s Nominated Healthcare Spokesperson(s) because the patient lacks mental capacity to make his/her own healthcare decisions due to __________________________________________________________ (please state reason, e.g brain tumour, advanced dementia)

A Cardiopulmonary Resuscitation (CPR): (When the patient is in cardiopulmonary arrest and is not breathing or has no pulse)

To proceed with CPR / attempt resuscitation. DO NOT attempt CPR (allow natural death).

When not in cardiopulmonary arrest, follow orders in B, C and D.

B Medical Intervention Guidelines: (When the patient has a pulse and is breathing)

COMFORT MEASURES ONLY

Patient is to be treated with dignity and respect. Reasonable measures are made to offer food and fluids. Medications, oxygen and other measures may be used as needed for comfort. Do not intubate. These measures may be used where the patient resides. Consider transfer only if comfort needs cannot be met in current location.

LIMITED ADDITIONAL INTERVENTION Includes care described above. To initiate limited trial of treatment. May include oral/intravenous medications. Continue with comfort measures if there is no clinical improvement. Do not use endotracheal intubation or long-term life support measures. May consider non-invasive ventilation support. Transfer to hospital if indicated. Avoid transfer to intensive care unit.

FULL TREATMENT Includes care described above. May consider intubation, mechanical ventilation, and cardioversion. Management may include transfer to intensive care if indicated. These measures are subject to the assessment and decisions of the hospital care team.


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Additional Care Preferences (e.g. dialysis, artificially administered nutrition, use of antibiotics, blood transfusions etc):

C Preferred place of medical treatment and care in event of deterioration

Remain in my own home / nursing home / hospice / hospital (please select one) Trial of treatment in own home / nursing home / hospice before considering transfer to hospital (please select one) Transfer to hospital Others (transfer to hospice, etc) ______________________________________________

No Preference

D Preferred Place of Death in event of deterioration Nursing Home Acute Hospital No Preference

Own Home Inpatient Hospice

E Other important notes (for e.g what living well means to the patient)

Patient’s Particulars: Name:

NRIC No: Signature & Date:

Primary Nominated Healthcare Spokesperson:

Name:

Relationship:


Secondary Nominated Healthcare Spokesperson:

Name:

Relationship:


Facilitator: Name:

Last 4 digits of NRIC: Signature & Date:

Physician-in-charge Name:

MCR No: Signature & Date:

Personal Data Protection Act (PDPA) The information contained in this ACP document will be stored in hard copy and/or soft copy by this organisation using reasonable security measures to ensure that the information is only accessed for legitimate reasons by this organisation's staff members and transmitted to external healthcare providers caring for this patient.

Directions For Healthcare Professionals

When completing the “Preferred Plan of Care” document: § Any incomplete section of the Preferred Plan of Care form will require physician’s discretion, as indicated. § Tick þ all relevant boxes in the form. § Photocopies and faxes of signed Preferred Plan of Care are valid. § Place this document at the front of the patient’s case notes during each hospitalization. § This document serves to guide and not dictate medical treatment. § The patient may verbally change his/her preferences. § Contact the facilitator or physician-in-charge for any queries.


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Review of the Preferred Plan of Care

Preferred Plan of Care should be reviewed if: § The patient is transferred from one care setting or care level to another, or § There is substantial change in the patient’s health status, or § The patient’s treatment preferences change.

PHOTOCOPIES OF THIS FORM ARE TO ACCOMPANY THE PATIENT UPON TRANSFER OR DISCHARGE

advance care planning: a communitarian approach?

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