Revista de Bioética y Derecho
E-ISSN: 1886-5887
[email protected]
Universitat de Barcelona
España
Navarro-Michel, Mónica
Advance directives as autonomy enhancers: reality or myth?
Revista de Bioética y Derecho, , 2015, pp. 189-192
Universitat de Barcelona
Barcelona, España
Available in: http://www.redalyc.org/articulo.oa?id=78343122020
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ISSN:1886‐5887
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RevistadeBioéticayDerecho
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ARTÍCULO
Advancedirectivesasautonomyenhancers:realityormyth?1
MÓNICANAVARRO‐MICHEL*
The Master in Bioethics and Law at the University of Barcelona supports the Bioethics and Law
Journal:www.bioethicsandlaw.es/master
*MónicaNavarro‐Michel.ProfessorofCivilLaw,UniversitatdeBarcelona.
1
This article was published in: Revista de Bioética y Derecho UB, no. 7, 2006. Lecture held at the International Congress
"MulticulturalismandHealth",heldintheScienceParkoftheUniversityofBarcelonaonMarch17,2006,organizedbytheEuropean
AssociationofGlobalBioethicsandtheBioethicsandLawObservatory.
Estaesunarevistaelectrónicadeaccesoabierto,loquesignificaquetodoelcontenidoesdelibreaccesosincostealgunoparaelusuarioosuinstitución.Losusuarios
puedenleer,descargar,copiar,distribuir,imprimiroenlazarlostextoscompletosdelosartículosenestarevistasinpedirpermisopreviodeleditorodelautor,siempre
quenomedielucroendichasoperacionesysiemprequesecitenlasfuentes.EstoestádeacuerdoconladefiniciónBOAIdeaccesoabierto.
Advancedirectivesasautonomyenhancers:realityormyth?‐MónicaNavarro‐Michel
| 190
IwouldliketostartmypresentationbythankingtheEuropeanAssociationofGlobalBioethicsforallowing
metopresentafreepapertoday.Inthelastfewdecadestherehasbeenawealthofliteratureandlegislationon
advancedirectives.Asyouallknow,itisaninstrumentbywhichapersoncanexpresstheirwishesasregardswhat
treatmenttheyshouldbegivenor,moretothepoint,nottobegiven,whenheisinasituationwhenhecannotdo
sohimself.Regulationsinthewesternworldseemtopromoteadvancedirectivesasawaytoenhancepatient’s
autonomyinthecontextofhumanrights,andthemediahaspresentedadvancedirectivesasanothermilestonein
thiseraofself‐determination.However,ifwelookcloselyatsomeofthoseregulationswewillseethattherearea
few elements which may undermine their efficacy, shattering this nicely presented picture. I will focus on two
elements.First,formalrequirements,andsecondly,certainlimitsorwhatIliketocall“escapeclauses”.
Formalrequirements
Someregulationsareverypreciseanddetailedonformalrequirements(forexample,theycallforwitnesses,
and set out in detail who can be a witness and who can not). Others seem very flexible, allowing for advance
directivestobeissuedinwrittenororalform,withoutmanyspecificrequirements.Althoughitmayseemthatby
admittingaverbalexpressionofthosewishestheperson’sautonomyisenhanced,itis,indeed,curtailed,sinceitis
unlikelythatthephysicianwillfindoutaboutsuchdecision,particularlyifthepersonisnotillatthetimeheissues
theadvancedirective.
Let’ssaythataftertoday’sseminar,Imeetacolleagueforadrink,andsay“Listen,Ihavebeenthinking,ifI
ameverinapersistentvegetativestate,Idonotwanttobeconnectedtoaventilator,andIrejectartificialnutrition,
andartificialresuscitationinthecaseofcardiacarrest.”Mycolleague,perfectlyawareoftheimportanceofwhatI
amsaying(shedid,afterall,attendtheseminar)saystome“Don’tworry;Iwillmakesureyourlifeisnotprolonged
unnecessarily”.IfIknowverbalexpressionofadvancedirectivesoutsidethehealthcarecontextarevalid,Ican
leaveitthatat.Let’sassumenowthatIhaveanaccidentandaminaPVS.Whenthesituationarisesfortheadvance
decisiontobecommunicatedtotheattendingphysician,mycolleaguemaynotcomeforth,eitherbecauseshe,God
forbid,maybedead,orincompetentherself,ormaybewehavestoppedtalkingtoeachotherovertheyears,orshe
mightbelivingabroad,orshemighthavejoinedareligiousgroupanddisagreeswithmypersonaldecisionsoshe
doesn’twanttocomeforth.Sothewishesexpressedtomycolleaguearevalid,buthowwilltheybeeffective?Also
wehavetobearinmindthatifwishesareexpressedtomorethanoneperson,peoplemightrememberdifferent
things,inparticularifdifferentinstructionsfordifferentscenariosaregiven.
Whenthepersonisill,anadvancedirectivemadeorallytotheattendingphysicianmightseemtoguarantee
thatthosewisheswillbecompliedwith,sincethephysicianknowsaboutthemandbothpatientandphysicianhave
beengivenachancetodiscussdifferentpossibleoutcomesoftheillness.Butifthepatient’spersonaldecisiondoes
notcoincidewithwhatthephysiciandeemstobethepatient’sbestinterest,itwillbeveryeasyforthephysicianto
overridethosewishes,simplybecausetherewillbenowrittenproofthatthepatienttoldhimotherwise.
Ithinkthereisastrongcaseforsomeformalrequirements.Thesearejustified
1.Toprovidereliableevidenceoftheperson’spreferencesandinstructions.
Estaesunarevistaelectrónicadeaccesoabierto,loquesignificaquetodoelcontenidoesdelibreaccesosincostealgunoparaelusuarioosuinstitución.Losusuarios
puedenleer,descargar,copiar,distribuir,imprimiroenlazarlostextoscompletosdelosartículosenestarevistasinpedirpermisopreviodeleditorodelautor,siempre
quenomedielucroendichasoperacionesysiemprequesecitenlasfuentes.EstoestádeacuerdoconladefiniciónBOAIdeaccesoabierto.
RevBioyDer.2015;Númeroextra,recopilatorioespecial:189‐192
| 191
2.Toreducethepossibilitiesoftheadvancedirectivetobecontestedordoubted.Sinceformalitiesprovide
a safeguard against hasty or ill‐considered decisions, it is a way to ensure that the issuer is aware of the
consequencesofmakinganadvancedirective,andthereforeitbecomesuntouchableonthatground.
Inageneralcontext,anyconsentorrefusalofconsentcanbemadeorallyorevenimplicitly,butIamfocusing
onadvancedirectives.Itis a special situationbecause the timelapsebetween the momentwhenthat refusalis
expressedandthemomentwhenitmaybecalledtocomeintoplaymakesacaseforformalrequirements.
Another instrument to help make advance directives effective in practice is a special registry (if not
compulsory,atleastvoluntary).Itallowsforphysicianstobeawareoftheexistenceandcontentsoftheadvance
directive. The need to create such a registry stems from two factors. First, although the issuer should give the
attendinghealthcareprovideracopyoftheadvancedirectivesoitcanbeincorporatedtothemedicalrecords,the
issuer is not necessarily an ill person in a hospital with an open medical record. Secondly, although the family
membersandtheproxy(ifany)haveadutytosupplytheadvancedirectivetothehealthcareproviderwhenthe
patientcannotdosopersonally,thereisnosanctionfornotdoingso.
Thekeytotheeffectiveapplicationofanadvancedirectiveistomakeitknowntotheattendingphysician.It
serves no purpose if locked in a drawer. And, again, although it may seem that any regulation that requires
formalitiesforthevalidityofadvancedirectiveswillmakeitdifficultforindividualstoissuethem,suchformalities
maybetheonlywaytoensurethattheyactuallyservetheirpurpose.
Limits
Differentlawsintroduce“escapeclauses”thatmayeffectivelyallowphysicianstoignoreadvancedirectives.
Thereareseveralwaysbywhichtheseloopholeshavebeenintroduced:
1.Unforeseencircumstances
Whenissuinganadvancedirective,apersonhastodefinetheparticularcircumstanceswhichwilltrigger
theuseoftheadvancedirectives.Butifthatpersonisnotsufferinganillnessatthetime,willgenerallynotbeable
to foresee all the possible situations that may eventually arise. One way to avoid the advance directive to be
overruledonthisgroundistofocusontheeffectsofillnesses,bywayofdefiningwhattheindividualconsidersan
unbearablesituationoraqualityoflifeincompatiblewithdignity,inadequatetofulfilhispersonallifeproject.
Althoughitisnecessaryforthepersontodefineageneralframeworkunderwhichtheadvancedirectivewill
beeffective,itseemsunnecessarytorequireahighdegreeofaccuracyinthedescriptionofcircumstancesthatwill
callfortheadvancedirectivetobeapplicable.Itseemsexcessivetodisregardanadvancedirectivesimplybecause
theconditionthepatientisindoesnotcoincideexactlywithwhatthedocumentsays.Themereevidencethata
person has taken the time to think about this matter, and issue an advance directive shows that that person is
concernedaboutlife‐sustainingtreatmentswhenthereisnopossibilityofrecovery,andhisfearoffutilemedical
Estaesunarevistaelectrónicadeaccesoabierto,loquesignificaquetodoelcontenidoesdelibreaccesosincostealgunoparaelusuarioosuinstitución.Losusuarios
puedenleer,descargar,copiar,distribuir,imprimiroenlazarlostextoscompletosdelosartículosenestarevistasinpedirpermisopreviodeleditorodelautor,siempre
quenomedielucroendichasoperacionesysiemprequesecitenlasfuentes.EstoestádeacuerdoconladefiniciónBOAIdeaccesoabierto.
Advancedirectivesasautonomyenhancers:realityormyth?‐MónicaNavarro‐Michel
| 192
treatments. There should be room for interpretation, but lack of exact coincidence should not lead to absolute
disregardfortheperson’swishes.
2.Soundmedicalpractice
Thisisaloopholethroughwhichpaternalismcanmakeitswaybackintothesceneofdecisionmaking.If
physicians act according to reasonable medical standards they can, in effect, veto the patient’s decision. What
professionalpracticeregardsassensible,tolerablemeasurestoprolongalifemaydifferradicallyfromwhatthat
patientconsiderstolerableoracceptabletohim.Ifultimatelyphysiciansdowhattheythinkisbestwithcomplete
disregardofthepatient’sexpresschoice,therewillbenopointinadvancedirectives.
Whois,afterall,thebestjudgeofone’sowninterests?Fromamedicalviewpointtheanswermighthaveto
bethatphysiciansare.Butinascertainingsuchbestinterests,issuesotherthanspecificallymedicalconsiderations
comeintoplay:socio‐economicfactors,theemotionalsupportapersonreceivesfromhisfamilyorcloserelations,
theperson’sideologyorbeliefs,thefreedomtopursuehappinessaccordingtohisorherownsetofvalues,the
person’sdignity,hispeaceofmind,factorswhichhavemuchtodowiththepatient’swell‐being.Ifwearetorespect
patient’sautonomyitshouldbewithdisregardtothecauseofsuchrefusaltomedicaltreatment.Intheoftenquoted
wordsofLordDonaldsoninReT.(Adult:RefusalofMedicalTreatment)(1992),4AllE.R.645at652,therightto
autonomy“existsnotwithstandingthatthereasonsformakingthechoicearerational,orirrational,unknownor
evennon‐existent”.
Finally,Iwouldliketosayawordabouttheeffectsofadvancedirectives.TheOviedoConventiononHuman
RightsandBiomedicine(4April1997)statesinarticle9that“Thepreviouslyexpressedwishesrelatingtoamedical
interventionbyapatientwhoisnot,atthetimeoftheintervention,inastatetoexpresshisorherwishesshallbe
takenintoaccount”.Itdoesnotsaythatanadvancedirectiveshouldbecompliedwith.Therationaleisthatgiven
thatthemattertobedecidedonisverygrave,advancedirectivesaretobetakenintoconsiderationasanimportant
elementinthedecisionmakingprocess,butshouldnotbemandatory.Butwhatdoes“takenintoaccount”mean?
Suchimpreciselanguagewouldseemtoallowaphysiciantooverrideorignoreanadvancedirectivealtogether.
Shouldwetakeonestepfurtherandmaketheadvancedirectivebindingforthephysician?Nothingshould
bedoneinthemedicalfieldautomatically,therearealwaysanumberoffactorstoanalyseandevaluate.However,
physiciansshouldnothavesubstantialdiscretiontooverridethepatient’sexpresswishes.Itmakesnosensefor
regulations,whicharedesignedtoextendautonomy,toallowphysicianstochoosetoignoreadvancedirectives.
Sotoanswerthequestion:doadvancedirectivesenhanceautonomyoristhatmerelyamyth?Regulations
areastepintherightdirection,butwehavenotgonefarenough.Ithasachillingeffecttorememberthatadvance
directiveregulationsdidnotstemsolelyfromthedesiretoenhancepatient’srights,buttoclarifythepositionof
physiciansandtodeterminethelegalconsequencesofdecisionstodiscontinuetreatment.Theruleswerenotaimed
primarilyatprotectingpatientsatall,butphysicians.Butifadvancedirectivesaretobeaninstrumentofpromoting
realautonomytheyhavetobetakenseriouslyortheywilloffernothingmorethanamereillusionofautonomy.
Estaesunarevistaelectrónicadeaccesoabierto,loquesignificaquetodoelcontenidoesdelibreaccesosincostealgunoparaelusuarioosuinstitución.Losusuarios
puedenleer,descargar,copiar,distribuir,imprimiroenlazarlostextoscompletosdelosartículosenestarevistasinpedirpermisopreviodeleditorodelautor,siempre
quenomedielucroendichasoperacionesysiemprequesecitenlasfuentes.EstoestádeacuerdoconladefiniciónBOAIdeaccesoabierto.