who -Assessing and supporting adolescentscapacity for autonomous decision-making in health-care settings-此为英文文档

Assessingandsupporting

adolescents’capacityfor

autonomousdecision-making

inhealth-caresettings

Atoolforhealth-careproviders

Assessingandsupporting

adolescents’capacityfor

autonomousdecision-making

inhealth-caresettings

Atoolforhealth-careproviders

Assessingandsupportingadolescents’capacityforautonomousdecision-making

inhealthcaresettings:atoolforhealth-careproviders

ISBN978-92-4-003956-8(electronicversion)

ISBN978-92-4-003957-5(printversion)

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iii

Contents

Acknowledgementsiv

Abbreviationsandacronyms

iv

Glossary

v

1.Introduction

1

2.Useofthetool

4

3.Context

5

3.1Adolescents’rights

5

3.2Developmentalperspective

6

3.3Assessmentofdecision-makingcapacity

6

3.4Legalconsiderations

7

3.5Ethicalconsiderations

7

4.Fourstepsinassessingadolescentcapacityfor

autonomousdecision-makinginhealth-caresettings

8

4.1Overview

8

4.2Thefoursteps

9

References

11

WebAnnex.Algorithmforhealth-careproviders

iv

Acknowledgements

PreparationofthisdocumentwascoordinatedbyValentinaBaltagattheDepartmentofMaternal,Newborn,Child&AdolescentHealthandAgeing,WorldHealthOrganization,Geneva.

TheleadwriterswereYusukeTakeuchi,Chiefresident,andAnne-EmmanuelleAmbresin,Head,InterdisciplinaryDivisionforadolescenthealth,LausanneUniversityHospital,Lausanne,Switzerland.

Themembersoftheexecutivepanelwere:KirstenBoisen,seniorspecialistconsultant,CentreforAdolescentmedicine,UniversityHospitalRigshospitalet,Copenhagen,Denmark;FrançoiseDominé,paediatrician,adolescenthealthclinician,CitadelleRegionalHospital,andDepartmentofPaediatrics,UniversityofLiège,Belgium;AlbertFarre,healthpsychologyresearcher,UniversityofDundee,Nethergate,Dundee,Scotland;PhilipJaffé,Professor,CentreforChildren’sRightsStudies,UniversityofGeneva,Switzerland;SabrinaKitaka,seniorlecturerandpaediatricsandadolescenthealthspecialist,DepartmentofPaediatrics,MakerereUniversityCollegeofHealthSciences,MulagoNationalReferralHospital,Kampala,Uganda;GalinaLesco,gynecologist,head,NationalResourceCentreinYouthFriendlyHealthServices,Chisinau,RepublicofMoldova;IreneMelamed,paediatrician,adolescenthealthspecialist,professorandresearcher,ProgrammeofBioethics.LatinAmericanFacultyofSocialSciences,BuenosAires,Argentina,andprofessor,MasterofBioethicsandLaw,UniversityofBarcelona,Spain;JanetMcDonagh,seniorlecturerinadolescentrheumatology,UniversityofManchester,England;AshaPemberton,consultantpaediatrician,SangreGrandeHospital,andclinicallead,CALMTeenClinicandMentalHealth.Portof

Spain,TrinidadandTobago;DyanaSafitriVelies,GynaecologyandObstetrics,UniversitasPelitaHarapan,FacultyofMedicine,Jakarta,Indonesia;andLaurenceSteinberg,DistinguishedUniversityProfessorandLauraH.CarnellProfessorofPsychology,TempleUniversity,Philadelphia(PA),USA.

PeerreviewatWHOwasconductedbyWoleAmeyan,GlobalHIV,HepatitisandSexuallyTransmittedInfectionsprogrammes;PaulBloem,DepartmentofImmunization,VaccinesandBiologicals;AnnemiekeBrands,GlobalTuberculosisProgramme;SonjaCaffe,RegionalOfficefortheAmericas;MarcusMarcellusStahlhofer,DepartmentofMaternal,Newborn,Child&AdolescentHealthandAgeing;VenkatramanChandra-Mouli,SexualandReproductiveHealthandResearch;andRajeshMehta,RegionalOfficeforSouth-EastAsia.PeerreviewattheUnitedNationsPopulationFundwasconductedbySatvikaChalasani.

ExternalpeerreviewwasconductedbyRobertBlum,JohnsHopkinsUrbanHealthInstitute,Baltimore(MD),USA;AleksandrKulikov,UniversityofStPetersburg,StPetersburg,RussianFederation;HarishPemde,KalawatiSaranChildren’sHospitalandLadyHardingeMedicalCollege,NewDelhi,India;JohnSantelli,ColumbiaUniversityMailmanSchoolofPublicHealth,NewYorkCity(NY),USA;andMamdouhWahba,EgyptianFamilyHealthSociety,Cairo,Egypt.

PreparationofthispublicationwassupportedbyagrantreceivedbytheWHODepartmentofMaternal,Newborn,ChildandAdolescentHealthandAgeingfromtheBill&MelindaGatesFoundation.

Abbreviationsandacronyms

HCP

healthcareprovider

WHO

WorldHealthOrganization

v

Glossary

Adolescent.WHOdefinesadolescentsaspeopleaged10–19years(7).

Adolescent-friendlyhealthcareandservices.TheWHO“qualityofcare”framework(2)setsfivecriteriaforhealthservicestobeconsideredadolescentfriendly:

‹accessible:adolescentscanobtaintheavailable

healthservices;

‹acceptable:adolescentsarewillingtoobtainthe

availablehealthservices;

‹equitable:alladolescents,notjustselectedgroups,

canobtaintheavailablehealthservices;

‹appropriate:thehealthservicesarethosethat

adolescentsneed;and

‹effective:therighthealthservicesareprovidedin

therightwayandmakeapositivecontributiontohealth.

Tobeconsideredadolescentfriendly,servicesmustadheretotheeightWHOglobalstandardstoimprovethequalityofhealth-careservicesforadolescents(7).

Anticipatoryguidance:Generallydefinedasdiscussionsandcounsellingtoanticipateandprepareparentsorlegalguardians,childrenandadolescentsforsignificantdevelopmentalchanges(physical,psychological,emotional,social)thatmayoccurbetweenhealthcarevisits.Includesallactionstopromoteprogressiveautonomyandself-managementbyadolescentsandtohelpparentsorlegalguardianstosupporttheautonomyoftheirchildoradolescent.Thecapacitytoexpressone’spointofviewandtomakedecisionsrequiresspecificskills.Everyhealthprofessionalhasadutytosupportchildrenandadolescentsintheacquisitionofsuchskillsfromanearlyage.Eachcontactwithachildoradolescentisthusanopportunitytoprovideanticipatoryguidance.

Attitude:Aperson’svaluesandbeliefsaboutaprocessorperson,whichinfluencetheirbehaviour(7).

Competence:Alegalconceptreferringtotherighttomakeanautonomousdecision(i.e.adecisiontakenwithoutauthorizationbyathirdparty,e.g.parentsorguardian).Theageofcompetencedependsonthenationallegalframework.Insomehigh-incomecountries,minoradolescentsareconsideredcompetentaslongas,inagivensituation,theirhealth-careprovidersconsiderthattheyarecapableofdecision-making.Inmanyothercountries,competenceisdefinedlegallyaccordingtoage.

Confidentiality:Therightofanindividual(e.g.adolescent)toprivacyofpersonalinformation,includinghealth-carerecords.Adolescentshavethe

righttoprivacyduringconsultations,examinationsandtreatments.Thus,confidentialcareisanessentialcomponentofthehealthcareofadolescentsandsupportstheirautonomy.Health-careproviders(HCP)shouldbeabletoinformadolescentsandtheirparentsorlegalguardiansaboutconfidentialcareanditslimits.Inapplyingconfidentiality,itisalsoessentialtoensureeffectivecommunicationwithparentsorlegalguardians,asappropriate.

Decision-makingcapacity:Whilecompetenceisalegalconcept,capacityisaclinicalconceptthatreferstotheindividualpsychologicalorcognitiveabilitytomakeadecision.Usually,fourdimensionsareconsideredtocontributetothecapacityformakingdecisions(3):howpeopleunderstandinformationabouttheirconditionandtheavailableoptions,howpeoplecomparetheoptionsbybalancingrisksandbenefitsandcandiscussthepotentialconsequencesofadecision,howpeoplediscusstherelevanceoftheoptionsfortheirownsituationandhowpeoplecanexpressachoiceandargueitinthelightofpreviousdiscussions.

Evolvingcapacity:Thecapacityofanadolescenttounderstandmattersthataffectchangesintheirlifeandhealthwithageandmaturity(7).Themoreanadolescentknows,hasexperiencedandunderstands,themoretheparent,legalguardianorotherpersonslegallyresponsibleforhimorhercantransformdirectionandguidanceintoremindersandadvice,andlaterintoexchangeonanequalfooting(4).

Inhealthcare,evolvingcapacitymeansthat,astheadolescentmatures,hisorherviewshaveincreasingweightinchoicesaboutcare.Thefactthattheadolescentisveryyoungorinavulnerablesituation(e.g.hasadisability,belongstoaminoritygroup,isamigrant)doesnotdeprivethemoftherighttoexpresstheirviews,nordoesitreducetheweightgiventotheadolescent’sviewsindeterminingtheirbestinterests(5)and,hence,choicesonaspectsofcare.

Informedchoice:Achoicemadebyanadolescentontheelementsofhisorhercare(e.g.treatmentoptions,follow-upoptions,refusalofservices)asaresultofadequate,appropriate,clearinformationforunderstandingthenature,risks,alternativestoamedicalprocedureortreatmentandtheirimplicationsforhealthandotheraspectsoftheadolescent’slife.Ifthereismorethanonepossiblecourseofactionforahealthconditionoriftheoutcomeofatreatmentisuncertain,theadvantagesofallpossibleoptionsmustbeweighedagainstallpossiblerisksandside-effects.Theviewsoftheadolescentmustbegivendueweightaccordingtohisorherageandmaturity(5).

viAssessingandsupportingadolescents’capacityforautonomousdecision-makinginhealth-caresettings

Informedconsent:Adocumented(usuallywritten)agreementorpermissionbasedonfull,clearinformationonthenature,risksandalternativesofamedicalprocedureortreatmentandtheirimplications,beforethephysicianorotherHCPbeginstheprocedureortreatment.Afterreceivingthisinformation,theadolescent(orathirdpartyauthorizedtogiveinformedconsent)eitherconsentstoorrefusestheprocedureortreatment.Theproceduresandtreatmentsthatrequireinformedconsentarestipulatedinnationallawsandregulations.Althoughmanyproceduresandtreatmentsdonotrequireinformedconsent,theadolescentshouldbesupportedtomakeaninformedchoiceandgiveassentiftheywish.

Rights:Adolescents’health-relatedrightsincludeatleastthefollowing(1):

‹Carethatisconsiderate,respectfulandnon-

judgementaloftheadolescent’suniquevaluesandbeliefs.Somevaluesandbeliefsarecommonlyheldbyalladolescentsorcommunitymembersandarefrequentlyculturalandreligiousinorigin.

Othersareheldbytheadolescentalone.Stronglyheldvaluesandbeliefscanshapethecareprocessandhowadolescentsrespondtocare.Thus,eachhealth-careprovidermustprovidecareandservicesthatrespectthedifferentvaluesandbeliefsofadolescents.Also,health-careprovidersshouldbenon-judgementalwithregardtoadolescents’personalcharacteristics,life-stylechoicesandlifecircumstances.

‹Carethatisrespectfuloftheadolescent’sneed

forprivacyduringconsultations,examinationsandtreatments.Adolescentprivacyisimportant,especiallyduringclinicalexaminationsandprocedures.Adolescentsmaydesireprivacyfromotherstaff,otherpatientsandevenfamilymembers.Staffmembersmustappreciatetheneedsofadolescentclientsforprivacyandrespectthoseneeds.

‹Protectionfromphysicalandverbalassaultand

otherformsofdegradingandinhumantreatment.Thisresponsibilityisparticularlyrelevanttoveryyoungandvulnerableadolescents,thosewhoarementallyillandotherswhocannotprotectthemselvesorsignalforhelp.

‹Informationthatisconfidentialandprotectedfrom

lossormisuse.Thefacilityrespectsinformationasconfidentialandimplementspoliciesandproceduresthatprotectinformationfromlossormisuse.Staffrespectadolescentconfidentialitybynotdisclosingtheirinformationtoathirdpartyunlesslegallyrequiredandbynotpostingconfidentialinformationorholdingclient-relateddiscussionsinpublicplaces.

‹Non-discrimination,whichistherightofevery

adolescenttothehighestattainablestandardofhealthandqualityofhealthcare,withoutdiscriminationofanykind,irrespectiveoftheadolescent’srace,colour,sex,language,religion,politicalorotheropinion,national,ethnicorsocialorigin,property,disability,birthorotherstatusofhisorherparentsorlegalguardian.

‹Participationincare.Unlessdecision-making

capacityisdelegatedbylawtoathirdpartyortheadolescentlacksdecision-makingcapacityasassessedbytherelevantauthority,1theadolescentdecidesonallaspectsofcare,includingrefusingcare.Theadolescentalsodecideswhichfamilymemberandfriends,ifany,participateinthe

careprocess.Adolescents’involvementincareisrespected,irrespectiveofwhethertheadolescenthasthelegalcapacityfordecision-making.Anadult’sjudgementofanadolescent’sbestinterestscannotoverridetheobligationtorespectallrightsofadolescentsasstipulatedintheConventionoftheRightsoftheChild(6).Thisincludestherightofanadolescentwhoiscapableofforminghisorherownviewstoexpressthoseviewsfreelyinallmattersthataffecthimorherandhavingthoseviewsgivendueweightinaccordancewiththeirageandmaturity(1,5)(seealsoEvolvingcapacity).Thefacilitysupportsandpromotesadolescentinvolvementinallaspectsofcarethroughrelatedpoliciesandprocedures.

Shareddecision-making:BasedonthepremisethatboththepatientandtheHCPareexpertsandworktogetherinmakingamedicaldecision.Thisconcept,whichmovesawayfromaunilateral,paternalisticviewofdecision-making,isnowwidelyacknowledgedasanessentialcomponentofpatient-centredcare(7).Therearemanymodelsofshareddecision-making.Mostincludethefollowingcomponents:describingtreatmentoptions,tailoringinformation,exploringpatientpreferences(concerns,goals,beliefsandvalues)anddeliberation(seekingaconsensualdecision)(8).

1Inmanycountries,health-careprovidershavetheauthoritytoassesswhetheranadolescenthasdecision-makingcapacity;insomecircumstances,adecisionistakenincourt.

1

1.Introduction

Backgroundandpurpose

Therighttoparticipateisafundamentalrightstatedinthe

InternationalConventionoftheRightsoftheChild.Thedefinition

of“child”intheConventionischildrenaged0–18years.Therefore,

alladolescentsshouldbeabletoparticipateandfreelyexpress

theirviewsonanydecisionsregardingtheirhealth,nomattertheir

decision-makingcapacity.Theweightgiventotheirviewsandtheir

degreeofautonomydepend,however,ontheirdecision-making

capacity,whichinturndependsontheirbiologicalmaturity(for

whichageisaproxymeasure)andtheirsocial,psychologicaland

cognitivematurity,whichdependstosomeextentonagebutisalso

shapedbyfactorssuchassocialnetworks,accesstoeducationand

familycontext.Evaluationofdecision-makingcapacityistherefore

notstraightforwardforHCPs,manyofwhomlacktrainingandtools

inconductingsuchevaluations,andageisoftenusedasthesole

indicatorofmaturity.

2Assessingandsupportingadolescents’capacityforautonomousdecision-makinginhealth-caresettings

TheGlobalAcceleratedActionforthehealthofadolescents:guidanceforcountryimplementation(9)recommendsthatinformedconsentbesoughtfromachildwhenheorsheisdeemedmatureenoughtomakeaninformeddecisionandthatdecisionsonmaturitybemadecase-by-case.Thisrecommendationshouldbetranslatedintoapracticaltoolforusebyprofessionalsinadolescenthealthtosupportchangesinthepracticeofyouthparticipation,enhancetheircapacityandoffercarethatisinthebestinterestsofadolescents.

Fromthisperspective,thepurposeofthistoolistohelpHCPsinassessingadolescentcapacityandtosupporttheminmakingautonomousdecisionsaboutvariousaspectsoftheircare.Thetoolisbasedonshareddecision-makingandthusconsiderstheperspectivesoftheindividual,familiesandcommunitiestoassessandsupportadolescentsinmakingdecisionsabouttheirhealth.Itsaimistomovefromavertical,paternalistic,unilateralviewofassessmenttoamuchmorehorizontal,integratedprocess,withtheadolescentasapartneratthecentreoftheprocess.

Targetaudience

Thetoolisdesignedforusebyanyhealthprofessionalwhoisinvolvedinthecareofadolescents.

Developmentofthetool

Thisguidanceisbasedonanevidencereviewundertakenbyagroupofinternationalexpertsinadolescentmedicine,adolescentgynaecology,nursing,epidemiology,publichealth,law,developmental,forensicandclinicalpsychology,psychiatry,sociologyandbioethics(70)andwasdevelopedbyanpanelof13professionalsrepresentingdifferentcontextsandgeographicalregionswithexpertiseinprimaryandreferral-levelpaediatricandadolescenthealthcare,children’srights,bioethics,developmentalpsychologyandresearchincompetenceanddecision-makingcapacity.Subsequently,apanelofinternationalexpertsrepresentingUnitedNationsagenciesandexpertsinthefieldofadolescenthealthcarereviewedthetoolforvalidationandfinalization.

LinkswithotherWHOresources

Thistooloperationalizesrecommendationsfrom

otherWHOdocumentsonadolescentrights-based

care,confidentialityandinformedconsent(Fig.1).

Introduction3

Fig.1.WHOdocumentsthataddresstheissuesofadolescentrights-basedcare,confidentialityandinformedconsent

WHOdocumentMessagesrelatedtoadolescentdecision-makingcapacity

Globalacceleratedactionforthehealthof

adolescents:guidanceforcountryimplementation

Providesrecommendationsforpolicy-makersonaddressingconsentandassenttohealthtreatmentorservicesinnationalpolicies(p.94)

WHO,UNAIDS.Globalstandardsforqualityhealth-careservicesforadolescents:aguidetoimplementastandards-drivenapproachtoimprovethequalityofhealthcareservicesforadolescents.Vol.1.Standardsandcriteria

Setsstandardsforrights-basedcareforadolescents,whichrequirethatadolescentsbeinvolvedindecisionsabouttheirowncare,thatHCPsexplicitlyrespecttheadolescent’sdecisiononpreferredoptionsandfollow-upandthatthehealthfacilitybuildsadolescents’capacityincertainaspectsofhealth-serviceprovision.

HIVandadolescents:guidanceforHIVtesting

andcounsellingandcareforadolescentsliving

withHIV:recommendationsforapublichealth

approachandconsiderationsforpolicy-makers

andmanagers

Countriesareencouragedtoexaminetheirconsentpoliciesandconsiderrevisingthemtoreduceage-relatedbarrierstoaccessanduptakeofcareandtoprovidelinkagestoprevention,treatmentandcareaftertesting.Youngpeopleshouldbeabletoobtainhealthcarewithoutparentalorguardianconsentorpresence.

WHOrecommendationsonadolescentsexual

andreproductivehealthandrights

Recommendsremovalofmandatorythird-party(e.g.parent,guardianorspousal)authorizationornotificationfortheprovisionofsexualandreproductivehealthservices,includinginformationoncontraceptiveservices.

4

2.Useofthetool

Fig.2.

Thetoolhasthreeparts:

Thefirstpart

describessituationsinwhichthistoolisapplicableandgivesanoverviewofthetoolataglance.

1

Thesecondpart

describesthecontextofwhichthehealthcareprovidershouldbeawarebeforeapplyingtheassessmentalgorithmdescribedinPart3.

2

Thethirdpart

describesthefourstepsinassessingandsupportingadolescents’capacitytomakedecisionsontheirowncare.

3

Beforeapplyingthetool,theuserisencouragedtobecomeacquaintedwithparts1and2.ThetoolisusefulinanysituationinwhichadolescentswishtomakeanautonomousdecisionabouttheirhealthandwheneitheranHCPorparentsorlegalguardiansdisagreewiththeirdecision.Thismayinclude,forexample,takingorstoppingmedication(includingcontraception),undergoingsurgery,undergoingexaminations,laboratorytestsorotherinvestigationsandbeingadmittedtohospital.Further,anadolescentmayaskforconfidentialcareinrelationtoparentsorlegalguardians.Inthesesituations,thetoolcanhelpprofessionalstodecide,withtheadolescent,whethertheycanagreetoofferconfidentialcare,partiallyorfully.Inallcases,thesocialandlegalcontextofthecountrymustbeconsidered.

Thetoolisdesignedforassessmentofminoradolescentclients.Thelegaldefinitionoftheterm“minor”differsamongcountries.Inmost,minorsare individualsunderthelegalageofmajority(usually18years),andtheloweragelimitisthatatwhichadolescentsshowsignificantcognitivecapacitytomakecertainindependentdecisions,usuallyfrom10–12years.Althoughthetoolisapplicablemainlyto individualsaged10–18years,youngerchildrenshouldalsobeinvolvedintheircareandinvitedtoexpress theirviews,regardlessoftheirage.

5

3.Context

3.1Adolescents’rights

AccordingtotheUnitedNationsConventionoftheRightsoftheChild(1989)(6),adolescentsshouldbeabletoexpressindependentchoices,accessservicesandasserttheirrights.TheConventioncitesfourgeneralprinciplesforguaranteeingtheenjoymentofallrights:

‹Article2:Non-discrimination

‹Article3:Bestinterests

‹Article6:Righttolife,survivalanddevelopment

‹Article12:Participation/Righttohaveone’sviews

expressedfreely(inaccordancewiththeageandmaturityofthechild)

Althoughtheexperienceofadolescentsdiffersbyregionandcontext,mostmeetanumberofchallengestorespectfortheirrights.Theseincludestigmatizationandanegativeperceptionofadolescents,lackofunderstandingoftheirdevelopmentalneedsandthedifficultyofbalancinganeedfo