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International Library of Ethics, Law, and the New Medicine 54 Peter Lack Nikola Biller-Andorno Susanne Brauer E ditors Advance Directives Advance Directives INTERNATIONAL LIBRARY OF ETHICS, LAW, AND THE NEW MEDICINE Founding Editors DAVID C. THOMASMA{ DAVID N. WEISSTUB, Universite´de Montre´al, Canada THOMASINE KIMBROUGH KUSHNER, University of California, Berkeley, U.S.A. Editor DAVID N. WEISSTUB, Universite´de Montre´al, Canada Editorial Board TERRY CARNEY, University of Sydney, Australia MARCUS DU¨WELL, Utrecht University, Utrecht, the Netherlands SØREN HOLM, University of Cardiff, Wales,United Kingdom GERRIT K. KIMSMA, Vrije Universiteit, Amsterdam, the Netherlands DAVID NOVAK, University of Toronto, Canada EDMUND D. PELLEGRINO, Georgetown University, Washington D.C., U.S.A. DOM RENZO PEGORARO, Fondazione Lanza and University of Padua, Italy DANIELP.SULMASY,SaintVincentCatholicMedicalCenters,NewYork,U.S.A. LAWRENCE TANCREDI, New York University, New York, U.S.A. VOLUME 54 For furthervolumes: http://www.springer.com/series/6224 Peter Lack (cid:129) Nikola Biller-Andorno Susanne Brauer Editors Advance Directives Editors PeterLack NikolaBiller-Andorno DepartmentofMoralTheology InstituteofBiomedicalEthics andEthics UniversityofZurich UniversityofFribourg Zurich,Switzerland Basel,Switzerland SusanneBrauer InstituteofBiomedicalEthics UniversityofZurich Zurich,Switzerland ISSN1567-8008 ISBN978-94-007-7376-9 ISBN978-94-007-7377-6(eBook) DOI10.1007/978-94-007-7377-6 SpringerDordrechtHeidelbergNewYorkLondon LibraryofCongressControlNumber:2013951646 ©SpringerScience+BusinessMediaDordrecht2014 Thisworkissubjecttocopyright.AllrightsarereservedbythePublisher,whetherthewholeorpart of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation,broadcasting,reproductiononmicrofilmsorinanyotherphysicalway,andtransmissionor informationstorageandretrieval,electronicadaptation,computersoftware,orbysimilarordissimilar methodologynowknownorhereafterdeveloped.Exemptedfromthislegalreservationarebriefexcerpts inconnectionwithreviewsorscholarlyanalysisormaterialsuppliedspecificallyforthepurposeofbeing enteredandexecutedonacomputersystem,forexclusiveusebythepurchaserofthework.Duplication ofthispublicationorpartsthereofispermittedonlyundertheprovisionsoftheCopyrightLawofthe Publisher’s location, in its current version, and permission for use must always be obtained from Springer.PermissionsforusemaybeobtainedthroughRightsLinkattheCopyrightClearanceCenter. 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Printedonacid-freepaper SpringerispartofSpringerScience+BusinessMedia(www.springer.com) Preface Advancedirectiveshavebeenintenselydebatedsincethe1980s.Overthepastfew years, a growing number of articles have focused not only on general ethical questions but also on matters of implementation, as advance directives have become increasingly widespread in institutions such as hospitals and nursing homes.Theparticularissuesarisingdependonvariouscontextualfactors,suchas the legal framework or the attitudes of health professionals regarding patient autonomyanditslimits. Oneofthemainreasonsfortheriseofadvancedirectiveshasbeenprogressin medical treatments and new technologies allowing patients to survive in life- threatening situations that would previously have led to death. Although these advances are considered beneficial in many cases, some patients want to exclude treatments which could be futile and stand in the way of a peaceful death. More- over, the value attached to patient autonomy—and the rejection of medical paternalism—has been growing in recent decades. Respect for patient autonomy, whichiscrucialincurrentmedicalethicsandlegislation,alsoembracestherightto refuse treatment. If patients are unable to express their wishes because of mental incapacity,advancedirectivesarefrequentlyusedinsurrogatedecision-making. Given the broad fundamental consensus on the appropriateness of advance directives,onemightwonderiftherewasanythinglefttoclarify.However,acloser lookatthedebateonadvancedirectivesrevealsthatmanyethicalandpolicyissues remaininneedoffurtherexploration. One concern is the ethical legitimation of advance directives. Their authority, in particular, is still widely debated, both from an ethical and more recently also from a legal viewpoint. This point is well illustrated by the example of Austrian legislation, which distinguishes between advance directives which are binding (verbindliche Patientenverfu¨gung) and those which are (merely) to be taken into consideration by physicians (beachtliche Patientenverfu¨gung). With regard to the German legislation, it was widely discussed whether it should be possible for advance directives to be drawn up for any (medical) situation, or whether some conditions, such as persistent vegetative state, should be excluded from this kind ofpatientself-determination.Theissuesofconsequencesforfamilymembersand v vi Preface possible conflicts with medical and nursing ethical standards are also subject to ongoing debate. As long as doubts concerning their ethical legitimation persist, advance directives will continue to be questioned—socially, medically and politically. Opinions differ widely on how advance directives should be legally imple- mented; for example, there are major differences between countries concerning the (legally) binding force of advance directives, or the particular situations for whichtheycanbeestablished.Howdecision-makingcapacityistobedetermined and/ordocumentedwhenadvancedirectivesarepreparedisalsoamatterofdebate. Inaddition,varioussolutionshavebeenproposedforspecificproblemsassociated with advance directives in the context of dementia care, imprisonment and psychiatry. Attitudestowardsadvancedirectivesdiffernotonlybetweencountriesbutalso withinagivencultureorstate:groupssuchaspatientsorhealthcareprofessionals maytendtoadoptdifferentperspectives,andmattersbecomeevenmorecomplex whenindividualsfromadifferentculturalbackgroundareconfrontedwithbiomed- icalorend-of-lifequestions. This volume presents an overview of the issues arising with regard to advance directivesfromaninternationalperspective.Here,thefamiliarandwidelyaccepted conceptofpatientself-determinationisunderstoodinabroadersensetocoverfuture situations. This includes instruments such as the power of attorney for healthcare (i.e. an individual designated by the patient) and advance care planning, which encompassesbothlivingwillsandmedical/nursingcareaimedatpreservingpatients’ autonomyinafuturesituationofmentalincapacityduetotheprogressionofagiven illness. It is hoped that the identification and discussion of common themes and differencesintheunderstandingofadvancedirectives,aswellasregulations,policies andclinicalpractices,willcontributetoacontinuousprocessofimprovingpatientcare whilealsopromotingrespectforpatients’ownpreferences. In Part I, we focus on the development of advance directives and consider the prerequisites fortheir validity.Inordertocomprehendthe ethicalissues involved andtheongoingcontroversies,itisessentialfirsttoreviewthehistoryoftheconcept. Alfred Simon describes the emergence of advance directives as a means to securepatientautonomyeveninsituationswherepatientsarenolongercompetent orabletoexpresstheirpreferences.Thishistoricalaccountstartswiththeoriginsof advance directives in the USA and goes on to describe their adoption in various European countries. It is emphasized that the implementation and legal status of advance directives is heterogeneous, despite the common normative framework provided by the Council of Europe’s Oviedo Convention. Simon’s chapter concludes with an overview of the main arguments brought forward in favour of andagainstadvancedirectivesandlegalregulationinthisarea. AlsoconsideredinPartIareissuesrelatingtothevalidityofadvancedirectives— theprerequisitesthatarephilosophicallydisputableandcontestedinpracticeunder different legal regulations. Decision-making capacity is a crucial concept for advancedirectives: individualsneed tobecompetent when theywriteanadvance directive which will only take effect when they have lost their decision-making capacity.Theassessmentofpatientswithmentaldisordersisparticularlycomplex. Preface vii Marie-Jo Thiel investigates whether individuals are indeed able to anticipate preferences concerning future illness. Anticipation, she argues, is influenced by socialandculturalfactors.Abriefhistoricalanalysishighlightsthewishtoremain incontrol,evenatthetimeofone’sowndeath,andtherelianceonreasonasmajor elements underlying the current interest in advance directives. Further contextual factors are identified in situational and philosophical analyses. Finally, the difficulties of anticipating future preferences are illustrated with reference to two examples—amyotrophiclateralsclerosisandAlzheimer’sdisease. Jochen Vollmann presents and discusses different concepts of competence, assessmenttoolsandassociatedchallengesinthelightofrelevantempiricalstudies. He concludes with ethical recommendations for the use of advance directives in psychiatric practice, emphasizing the potential of advance directives to improve patient-orientedpsychiatriccarebyfosteringcommunicationbetweenpatientsand mentalhealthprofessionals. Apart from the fundamental conceptual issues, a number of questions arise concerning the implementation of advance directives. For example, should there be any limit to the treatment options that can be refused or specified in advance directives?Howbindingshouldtheybe—dophysicianshavetoconsiderthemoract upon them (unless certain exceptions apply)? Should incompetent persons’ non-verbalgesturesandsignsrenderadvancedirectivesinvalid?Aretheresituations where advance directives could be disregarded because of certain constraints (e.g.prisons,psychiatricinterventions).TheseissuesarediscussedinPartII. RobertOlickfirstexaminesthescopeandlimitsofadvancedirectives,together withtherightsanddutiesofhealthcareprovidersandhealthcareproxies.Anumber ofcasesareusedtoillustratecommonchallengesforhonouringadvancedirectives in different clinical contexts, and to demonstrate how the ethical and legal perspectivesmaycollide. Whereasthecriteriaforthevalidityandbindingforceofadvancedirectiveshave been increasingly regulated, the conditions for revoking an advance directive are less clear. Ralf Jox addresses this issue, first discussing the stability of treatment preferencesovertimeandthenexaminingpossibleconditionsforvalidrevocation. Finally, he considers the questionof whether non-verbal, behavioural expressions canbeinterpretedasconstitutingarevocationofanadvancedirective. Advancedirectivesandadvanceplanningplayaspecialroleinpsychiatry.The fluctuating nature of mental illness gives rise to difficulties in the writing and implementation of advance directives. According to Jacqueline Atkinson and Jacquie Reilly, advance directives in psychiatry will always involve a conflict betweenself-determination(i.e.followingthepatient’swishes)andsociety’sdesire to protect patients and their fellow citizens. This conflict is exacerbated when compulsorydetentionandtreatmentarerequiredbuthavetobebalancedwiththe patient’srighttoautonomy. Bernice Elger’s contribution deals with a particular patient population— imprisonedpatients.Thewidelyacknowledgedprincipleofequivalencestipulates that prisoners are to receive the same standard of healthcare as is available to the generalpopulation.Thisincludestherighttoself-determinationregardingmedical viii Preface interventions, which may take the form of an advance directive. Elger first examines general ethical and legal aspects of advance directives in the context of imprisonment and then discusses advance directives in three specific situations— hungerstrikes,end-of-lifecareandpsychiatrictreatmentofdetainedpersons. It is not clear precisely how advance directives affect the relationship between patient and physician, family members and loved ones. Some healthcare workers consider their professional ethos and autonomy to be called into question by advance directives, and relatives or loved ones may be surprised or even hurt by thewishesspecifiedinadvancedirectives.Yetsomepatientsassertthattheirtrustin aphysicianisstrengthenedbydiscussingandestablishingadvancedirectives,and that,bygivinginstructionsinthisway,theyintendtoeasetheburdenofdecision- making otherwise borne by their family and loved ones. Part III broadens the perspectivetoincludethesocialenvironmentofthosewhouseadvancedirectives. Mark P. Aulisio argues that the advance directive movement, while failing to achieve its primary goal, has nevertheless brought about a paradigm shift in the patient-physician relationship. In what he terms the “standard justification”, advance directives are taken to be vehicles for making effective the autonomous moral agency of persons in circumstances in which such agency could not other- wise be effective since the person in question lacks the capacity to exercise this agency.Inempiricalterms,theadvancedirectivemovementhasclearlymissedits goal sinceonly aminority of patients possess an advance directive. Also, surveys have demonstrated that patients’ treatment preferences are often incorrectly predictedbysurrogatedecision-makers.However,bysupportingpatientautonomy as a political value—a limitation of the authority and standing of the “good doctor”—the advance directive movement has promoted a more patient-centred approachinclinicalpractice. Focusing ontheroleofthefamilyandclosepersons,MargotMichelconsiders the international legal framework and Swiss legislation on advance directives. How, she asks, is patient autonomy to be protected when a patient becomes incompetent? Under thesecircumstances, theroleofthefamilyandclose persons becomescrucialbecauseadvancedirectivesneedtobeinterpretedandimplemented bythirdparties.Michelstressesthatthedecisiontodeclareapatientincompetentis absolutely vital to the further involvement of the patient in the decision-making process.Sherecommendsthat,fortheassessmentofcompetence,ethicalguidelines and best practice standards should be developed, as opposed to a rather inflexible legaldefinition.However,thelawcansupportpatientautonomybyspecifyingwho canactasaproxydecision-makerforanincompetentpatient,andlegalsafeguards are required in case the patient’s representative or medical staff fail to act in the patient’sinterestsoraccordingtohisorherpresumedwishes. SettimioMonteverdeanalysesadvancedirectivesinthecontextofnursingcare. Hepointsoutthatnurseshaveaprivilegedpositionderivingfromtheirproximityto the patient. This position can lead to ambiguities when instructions given in an advance directive conflict with medical prescriptions, proxies’ preferences or the ethos of good nursing care. Nurses are called on to express their ethical concerns when care-related conflicts arise. In addition, they need to resolve the tension Preface ix betweenclosenessanddistancebyrespectingthepatient’swishesandbestinterests without failing to question an advance directive if necessary. Because of their special closeness to patients, nurses can act as systemic change agents in establishing and maintaining a culture of trust and patient orientation at every stageoftheadvanceplanninganddeliveryofcare. PartIVtakesupthequestionofethicalchallengesraisedbyadvancedirectives. AccordingtoManuelTrachsel,ChristineMitchellandNikolaBiller-Andorno,the implementation of advance directives depends on their interpretation by third parties, namely the responsible physician or healthcare team. Advance directives are not always clearly formulated and have to be interpreted in the light of the specificmedicalsituation.Thisprocessmayinvolveaconflictbetweenrespectfor autonomyontheonehandandpaternalismontheother.Aswellaspresentinglegal standards,theauthorsdiscussvariousethicalcriteriathatcanprovideguidancefor appropriateinterpretationofadvancedirectives. Ruth Horn and Ruud ter Meulen tackle the question of whether it is ethically justified to promote advance directives as instruments for cutting the costs of healthcare by counteracting the growing medicalization of dying. The authors emphasize that the use of advance directives for cost control is only ethically acceptable if they reflect patients’ authentic wishes. In their view, however, it remains questionable whether advance directives are valid instruments to express thepatient’sgenuinewillinaspecificsituation.Inordertoavoidshortcomingsof advance directives such as the difficulty of anticipating future events and specific preferences, Horn and ter Meulen recommend that advance directives should be placed in the broader context of advance care planning, aiming to enhance conversationsbetweenphysiciansandpatients. Some of the authors in this volume see the term “advance directive” also as a codeforaculturalshiftinmedicine,awayfrompaternalismandtheprimacyofthe technologically feasible towards a practice centred on the patient’s needs and preferences. Tanja Krones and Sohaila Bastami outline the potential for advance directives to evolve from a legal—sometimes legalistic—document with limited utilityinclinicalpracticeintoapatient-orientedprocessemphasizingcommunica- tion and support for patients and caregivers. Starting with a discussion of the reasonsforthe“failure”ofthelivingwill,theirchapterdescribesthemainfeatures ofadvancecareplanning,obstaclestoitsimplementationandempiricaldataonits effectiveness. In the concluding remarks, the editors raise the question of whether it is culturally and politically desirable and ethically required to try and reach a more substantial agreement on advance directives beyond the minimal consensus formulated in the 1997 Convention on Human Rights and Biomedicine. They identify common ground between the individual contributors and highlight the importance of a relational understanding of advance directives, as well as the broader clinical context of advance care planning, rather than a narrow, legalistic approach.Finally,theycallforspecificlegalsafeguardsandforcommonstandards todeterminewhenanadvancedirectivegoesintoeffect.
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